If you’ve followed on facebook, you know of my experience at the urgent care facility. Nathaniel was having a pretty severe leg bleed, and our hemophilia doc decided he really needed multiple infusions over a couple of days. He received his first on Saturday. Once again, shout out to our dear friend Erin for her support that day.
Nathaniel is a hard stick, as far as IV’s go. The poor kid has been pricked and poked and punctured so much, that finding a vein that isn’t scarred or doesn’t collapse when they get the needle in is very difficult. This means that he usually needs to be poked multiple times in multiple veins before they get an IV that’s usable. Once he gets the IV, it’s usually a pretty quick process. It takes longer to find a vein and get him stuck than it does to give him the clotting factor.
So he gets the clotting factor on Saturday, which we were able to do at home (barely). The bleed didn’t get larger, but by Monday morning, it hadn’t shown any signs of reducing in size either, which is the indicator that the bleed has actually stopped. This isn’t unusual. Depending on the severity of the particular bleed, sometimes it takes multiple doses of the clotting factor to stop it.
By Monday, late afternoon, Lesley and the hemophilia treatment team decided another dose would be beneficial. By then, it was too late to get Nathaniel into the Hemophilia Treatment Center (HTC, for short), so she needed to take him to the urgent care at the Women’s and Children’s hospital. No problem.
She drives up. They admit him. It takes a few sticks, but they finally get the IV in a vein. They give him the clotting factor. Lesley and Nathaniel come home. It really should be that simple.
Tuesday, Lesley is in communication with the hemophilia treatment team. The bleed in his leg seems to be getting better, but not much progress, so they decide one more infusion. Once again, by the time they make the decision, it is too late to get him into the HTC, so back to the urgent care we go.
I called on my way, stating that the hemophilia doc wanted an IV run so that he could get another dose of the clotting factor. “We’re expecting you,” they said, “your wife called earlier saying you were bringing him.” Cool, this should go pretty easily.
We get there around 5:30. It took 4 sticks in 4 different veins, but on the 4th stick they got him in a vein in his ankle around 5:40. They taped it up. It was actually time for Nathaniel to receive one of his breathing treatments, so the urgent care doc took a listen to his lungs, agreed he needed one, and gave it to him. Wow. That was easy. We were waiting for them to come in and give him the factor. I mentioned to the nurse that Nathaniel has a history of digging out his IV’s, especially the ones in his feet and ankles, by rubbing his other foot against them until they come out. I told her that we needed to give him the clotting factor fairly quickly before he got it out.
“Oh,” she said, “it’s taped up too well. He won’t get it out.” That was at 6:00.
The doc came in to check on us. I told him that Nathaniel in the past has gotten his IV’s out by rubbing his feet together, and that we needed to get the clotting factor in quickly before he dug out the IV.
“He won’t dig it out,” the doc said, “it’s all taped up.” That was at 6:30.
Let me interrupt for a moment by describing Nathaniel’s desire to get his IV’s out of his skin. We went to the HTC when Nathaniel was having his thigh bleed. He was going to need multiple infusions for that one, so they decided to leave the IV in overnight. They taped all the way around his foot, where the IV was, then wrapped wash cloths around it, and taped those around it, as well. It was basically a cast on his leg.
The little bugger dug his feet together, kicked his leg like a horse, and dug his feet together some more, until sometime in the night while we were sleeping, he had gotten through the taped wash cloths, through the taped gauze, and through the tape around the IV, and dug the thing out of his foot.
He doesn’t like having IV’s in his body.
The doc at the urgent care told me he wasn’t particularly convinced that Nathaniel needed the factor, and that he wanted to confer with Dr. Gruner (the hemophilia doc) before giving it to him.
HE HAS THE IV!!! WHAT THE HELL?!!!
Let me explain: Giving clotting factor to a hemophiliac is not going to hurt him. As a matter of fact, if it isn’t needed to stop a bleed, then it actually works as a proactive preventative measure.
Give him the freakin’ factor so we can go home.
So we’ve been there an hour at this point with a needle in my boy’s ankle. The doc doesn’t want to give him the factor because he’s not sure it’s necessary. I wanted to ask the doctor how often he has to manage a hemophiliac’s healthcare, because I have to do it daily. While I know the doc has a heck of a lot of knowledge that I don’t have, this is one area where I think I may actually know more than the doc.
Another nurse comes in the room. Same exchange. Me: We need to do this quickly, blah, blah, blah. Nurse: He won’t dig it out, blah, blah, blah. This was at 7:20.
7:30, we’ve been there 2 hours, 1 hour and 50 minutes of which Nathaniel’s had a needle in his ankle. I had covered him with a blanket to keep him warm. He gives a nice hard kick and…
Blood everywhere.
I swore as I swung open the door, then I yelled down the hallway because there wasn’t anybody in sight, “He got his IV out and there’s blood all over everything.” Then I went back to Nathaniel and grabbed the blanket to hold pressure on the IV site to try stop the bleeding.
A nurse came running, one of the ones I had told earlier about him digging it out if we didn’t act quickly. Not an apology. Not an, “I’m an arrogant butthead who doesn’t listen to my patients.” Nothing. She goes to work cleaning him up as I continue to hold pressure on the IV site. The dose of clotting factor he had gotten the day before was apparently working, because after several long minutes of pressure, the bleeding at the IV site finally stopped.
They called back the nurse who had gotten the vein 2 hours ago. I told him I was pissed. I told him that I had warned them that he would dig it out if we didn’t give him the factor quickly. He didn’t really say anything.
3 more attempts at a vein somewhere on the little guy’s body, and on the 3rd try they got him in the hand. They got the IV in, gave him the factor, and told us we were ok to go home now. From when the nurse came in to stick him again to when they told us we could leave took about 15 minutes.
Unbelievable.
I work in the mental health/substance abuse side of health care. I know that there are many times that patients don’t know what they really need to make them better. That’s why we seek out health professionals. Sometimes, we don’t have the knowledge or the insight to know what really might be wrong with us or how to fix it.
But sometimes we do.
Treatment, all treatment whether it’s physical health, mental health, or substance abuse, all treatment is a cooperation between the one receiving treatment and the one providing treatment. That means we need to listen to each other. There is a real arrogance in the health treatment field among providers. Some providers believe that they have all of the answers and the patient needs to sit there and take what is given. This is a bunch of crap.
In Nathaniel’s case, we know what is wrong, and we know how to fix it. We just need someone to run an IV for us. Lesley and I have even been shown how to mix up the factor, get it into the syringe, and administer ourselves. We just need an IV to do it.
If they had listened to me last night, Nathaniel would not have been stuck an extra 3 times. Their arrogance cost Nathaniel the pain of being punctured again, and cost my family valuable time together.
We were warned that we would have to battle with medical personnel about what our son needs when we take him to seek medical help. I thought, “Oh, it can’t be that bad.” But it is. It’s frustrating. It’s painful (for Nathaniel especially, but for the rest of the family, as well, who are going through this with him.) And sometimes, it’s humiliating.
Being a provider of mental health/substance abuse services, I have resolved to be on constant guard against this arrogance in my own approach to my clients. Being a receiver of health services, I have resolved to confront it directly whenever I experience it from my providers, especially when it involves my children.
Wednesday, November 30, 2011
Monday, November 07, 2011
The Cloud of Uncertainty
I've always been of the opinion that babies were easy. If a baby's upset, it's basically one of three things: either the diaper needs to be changed, the belly's hungry, or the kid is tired. Anytime the baby's upset, you address these three things in order, and you have what is basically a happy baby. Fevers and rashes are the exception, in which case you usually seek medical attention by calling your pediatrician. No big deal, a quick visit to the doctor, administer some meds, and bottaboom-bottabang, you're back to the basic three.
Nathaniel has been a whole other ball of wax.
For example, our latest stint in the hospital. We decided it would be easier to have Nathaniel receive his 4 month vaccinations while in the hospital. He was in the hospital due to the compromised condtion of his lungs. Jacob brought home a cold several weeks ago, and Nathaniel picked it up. We were pretty sure he was over the cold, but he continued to be congested. The congestion was getting worse and worse, and when we realized that his breathing would actually stop at night due to the congestion, we knew it was time to seek a greater level of medical care.
We took him to the pulmonologist who wanted to stress to us that he was not hospitalizing Nathaniel due to a failure of ours. No, he was hospitalizing Nathaniel because Nathaniel needed a greater level of care than we could provide, not because we had not provided the greatest level of care that we could.
So they did round the clock breathing treatments every two hours and gave him steroids (prednazone) through an IV. 2 days later he was back to the boy we knew. He was smiling, laughing, playing, and interacting, and most importantly, breathing like normal, or at least normal for him. We decided it would be easier to make sure Nathaniel got his 4 month vaccinations and a shot of Synagis (which protects from RSV) before he left the hospital. The resident physician declined to give him a shot of the blood clotting factor prior to giving him the 5 shots in his thighs. When we asked the doctor about giving clotting, the doctor responded that he didn't need it if he wasn't bleeding.
We went home Saturday night with what we thought was a healthy baby with a sore leg (due to the injections). His right leg started to swell. And swell. And swell.
By Sunday morning, the skin around his thigh was taut. Lesley called the hemophilia treatment center nurses, who told her that it was probably a reaction to the injections. Not to worry, they told us, it would go away in a couple of days.
That didn't feel right to us, but what do we know?
We called again later because nothing we did seemed to help or comfort him. Same response.
Lesley decided to go the ER. When she arrived at the ER, Nathaniel had calmed down (read "quit screaming") during the car ride from Jefferson City to the Women's and Children's hospital in Columbia. There were so many people in the ER waiting room that they were literally seeing people in the hallway. Rather than check him in, Lesley pulled a fast one. She called the hospital and asked to speak with the on-call pediatrician. She spoke via the phone and described the situation.
The pediatrician told Lesley that the swelling was a normal reaction in infants to the 4 month vaccinations. Not to worry, go home, if it doesn't get better in a couple of days, then you have something to worry about. Lesley came home, but it still didn't feel right.
But what do we know?
Monday morning, the swelling was worse. Lesley contacted the Hemophilia Treatment Center nurses and made arrangements to have Nathaniel seen at 11:00 am. I met her at the doctor's office. It was a brief examination. Muscle bleed in the right thigh causing severe swelling. Nathaniel was given an IV in the left foot, a shot of clotting factor, and had to have an ultrasound done in order to make sure that blood was flowing through the swolen part of his leg to the lower leg. The danger of prolonged swelling like Nathaniel was experiencing is a condition called compartment syndrome, which (simplistically put) is when the swelling causes compression damage to the nerves in the leg, which could lead to long term problems.
Well, the blood was still flowing, which rules out the possibility of compartment syndrome for now. The doctor wants to see Nathaniel again on Tuesday to make sure that his swelling has gone down and he is actually out of danger of compartment syndrome.
Put all that on the back burner for a minute.
There is a book that was written in the middle ages on contemplative prayer called "The Cloud of Unknowing." The basic idea of the book is that when we enter true contemplative prayer, we enter a space (for lack of a better word) in which "knowing" is impossible, and actually futile. It's pure experience of the presence of God. God overwhelms our senses so that we do not "know" anything anymore. All we are left with is an overhwelming sense of the presence of God.
That's where I'm at with Nathaniel and his illness and all the possibilities of things that could happen as a result of his hemophilia.
I have experienced a greater degree of self-doubt and uncertainty about what I've known as a father since the day I saw Jacob's little face when he was born. Everything I thought I knew about being a dad, and frankly has worked fairly well up to this point (judging by the feedback we get on how good our children are) is out the window.
Is Nathaniel's swelling a normal reaction to his 4 month injections, as the doctors and nurses (even the hemophilia specialists) told us? Or is it an internal bleed like my gut was telling me that could lead to serious, long-term physical problems?
Is Nathaniel fussy because he's colicky? Or is he bleeding somewhere in his body that I can't tell?
Is he drifting off to sleep because he's tired? Or because he's having a brain bleed?
Is Nathaniel's breathing getting worse because he's contracted a cold? Or is he suffocating on his fluids because he's bleeding into the lungs or as a residual effect of the injury to his lungs he suffered when he was just 2 days old?
I'm overwhelmed by how little I know, and I live in a constant state of fear that my child is going to die because I guessed wrong. I'm really, really scared of guessing wrong.
Terrified, actually.
I hate that old cliche that "God never gives us anything more than we can handle."
At this point, that ranks right up there with, "Everything happens for a reason." And if you want to know how I feel about that one, see my earlier post.
And don't go quoting to me 1 Corinthians 10:13 either. That doesn't say God won't give me anything I can't handle. It says that whatever God sends our way, he gives us a way out of it. And I know what that way out of it is:
It's Him.
In raising Nathaniel (and Jacob and Caitlin, despite my strong sense of self-sufficiency and delusional belief that I had this parenting thing figured out), I am completely and totally and utterly dependent on Him. That's all I'm left with in my "cloud of uncertainty": the experience of my own powerlessness, lack of knowledge, strength, wisdom. In my cloud of uncertainty where I do not know what is the right thing to do for my child TO KEEP HIM ALIVE, I can only depend completely on my God. I have no knowledge, no insight, no wisdom, nothing that I need to care for this child (or Jacob or Caitlin). I am naked in the cold and the dark with not even the vaguest sense of where the light is.
In my cloud of uncertainty, I have nothing except the experience of my utter dependence on God.
I am completely dependent on my God.
That's where I should have known I've always been in the first place.
Nathaniel has been a whole other ball of wax.
For example, our latest stint in the hospital. We decided it would be easier to have Nathaniel receive his 4 month vaccinations while in the hospital. He was in the hospital due to the compromised condtion of his lungs. Jacob brought home a cold several weeks ago, and Nathaniel picked it up. We were pretty sure he was over the cold, but he continued to be congested. The congestion was getting worse and worse, and when we realized that his breathing would actually stop at night due to the congestion, we knew it was time to seek a greater level of medical care.
We took him to the pulmonologist who wanted to stress to us that he was not hospitalizing Nathaniel due to a failure of ours. No, he was hospitalizing Nathaniel because Nathaniel needed a greater level of care than we could provide, not because we had not provided the greatest level of care that we could.
So they did round the clock breathing treatments every two hours and gave him steroids (prednazone) through an IV. 2 days later he was back to the boy we knew. He was smiling, laughing, playing, and interacting, and most importantly, breathing like normal, or at least normal for him. We decided it would be easier to make sure Nathaniel got his 4 month vaccinations and a shot of Synagis (which protects from RSV) before he left the hospital. The resident physician declined to give him a shot of the blood clotting factor prior to giving him the 5 shots in his thighs. When we asked the doctor about giving clotting, the doctor responded that he didn't need it if he wasn't bleeding.
We went home Saturday night with what we thought was a healthy baby with a sore leg (due to the injections). His right leg started to swell. And swell. And swell.
By Sunday morning, the skin around his thigh was taut. Lesley called the hemophilia treatment center nurses, who told her that it was probably a reaction to the injections. Not to worry, they told us, it would go away in a couple of days.
That didn't feel right to us, but what do we know?
We called again later because nothing we did seemed to help or comfort him. Same response.
Lesley decided to go the ER. When she arrived at the ER, Nathaniel had calmed down (read "quit screaming") during the car ride from Jefferson City to the Women's and Children's hospital in Columbia. There were so many people in the ER waiting room that they were literally seeing people in the hallway. Rather than check him in, Lesley pulled a fast one. She called the hospital and asked to speak with the on-call pediatrician. She spoke via the phone and described the situation.
The pediatrician told Lesley that the swelling was a normal reaction in infants to the 4 month vaccinations. Not to worry, go home, if it doesn't get better in a couple of days, then you have something to worry about. Lesley came home, but it still didn't feel right.
But what do we know?
Monday morning, the swelling was worse. Lesley contacted the Hemophilia Treatment Center nurses and made arrangements to have Nathaniel seen at 11:00 am. I met her at the doctor's office. It was a brief examination. Muscle bleed in the right thigh causing severe swelling. Nathaniel was given an IV in the left foot, a shot of clotting factor, and had to have an ultrasound done in order to make sure that blood was flowing through the swolen part of his leg to the lower leg. The danger of prolonged swelling like Nathaniel was experiencing is a condition called compartment syndrome, which (simplistically put) is when the swelling causes compression damage to the nerves in the leg, which could lead to long term problems.
Well, the blood was still flowing, which rules out the possibility of compartment syndrome for now. The doctor wants to see Nathaniel again on Tuesday to make sure that his swelling has gone down and he is actually out of danger of compartment syndrome.
Put all that on the back burner for a minute.
There is a book that was written in the middle ages on contemplative prayer called "The Cloud of Unknowing." The basic idea of the book is that when we enter true contemplative prayer, we enter a space (for lack of a better word) in which "knowing" is impossible, and actually futile. It's pure experience of the presence of God. God overwhelms our senses so that we do not "know" anything anymore. All we are left with is an overhwelming sense of the presence of God.
That's where I'm at with Nathaniel and his illness and all the possibilities of things that could happen as a result of his hemophilia.
I have experienced a greater degree of self-doubt and uncertainty about what I've known as a father since the day I saw Jacob's little face when he was born. Everything I thought I knew about being a dad, and frankly has worked fairly well up to this point (judging by the feedback we get on how good our children are) is out the window.
Is Nathaniel's swelling a normal reaction to his 4 month injections, as the doctors and nurses (even the hemophilia specialists) told us? Or is it an internal bleed like my gut was telling me that could lead to serious, long-term physical problems?
Is Nathaniel fussy because he's colicky? Or is he bleeding somewhere in his body that I can't tell?
Is he drifting off to sleep because he's tired? Or because he's having a brain bleed?
Is Nathaniel's breathing getting worse because he's contracted a cold? Or is he suffocating on his fluids because he's bleeding into the lungs or as a residual effect of the injury to his lungs he suffered when he was just 2 days old?
I'm overwhelmed by how little I know, and I live in a constant state of fear that my child is going to die because I guessed wrong. I'm really, really scared of guessing wrong.
Terrified, actually.
I hate that old cliche that "God never gives us anything more than we can handle."
At this point, that ranks right up there with, "Everything happens for a reason." And if you want to know how I feel about that one, see my earlier post.
And don't go quoting to me 1 Corinthians 10:13 either. That doesn't say God won't give me anything I can't handle. It says that whatever God sends our way, he gives us a way out of it. And I know what that way out of it is:
It's Him.
In raising Nathaniel (and Jacob and Caitlin, despite my strong sense of self-sufficiency and delusional belief that I had this parenting thing figured out), I am completely and totally and utterly dependent on Him. That's all I'm left with in my "cloud of uncertainty": the experience of my own powerlessness, lack of knowledge, strength, wisdom. In my cloud of uncertainty where I do not know what is the right thing to do for my child TO KEEP HIM ALIVE, I can only depend completely on my God. I have no knowledge, no insight, no wisdom, nothing that I need to care for this child (or Jacob or Caitlin). I am naked in the cold and the dark with not even the vaguest sense of where the light is.
In my cloud of uncertainty, I have nothing except the experience of my utter dependence on God.
I am completely dependent on my God.
That's where I should have known I've always been in the first place.
Friday, October 21, 2011
5 Years Later
I was eating lunch recently with my two counselors in the treatment center. They both know that I was a priest and am now a counselor, but do not know the circumstances that led to my transition. After nearly 10 months of working together, one of them finally had the courage to ask, “So how did someone who was a Catholic priest end up as a substance abuse treatment counselor?”
I responded, “I knocked up the organist.”
The other counselor spit out her food laughing so hard and the one who asked the question sat up, straightened her skirt, and said, “Ok.”
She didn’t ask me anymore about it, which honestly surprised me.
I’ve been away from the priesthood for over 5 years now. It’s been a while since I reflected on the fact that I was a priest, and now am not. (At least, in a practical way. I understand that once a man is ordained, it is for eternity, an “indelible mark.” I am not active in ministry as a priest at this time). Maybe it’s time I returned to the subject.
I knew, prior to getting ordained, that I should not get ordained. I can say that with as much certainty as I can say that I’m sitting in this chair. There was that still, quiet voice in my conscience letting me know that I was doing something I shouldn’t have done. So if I had this dictate of conscience, why did I get ordained?
Approval. Affirmation. There’s any number of ways to describe the fundamental motive. I got ordained because I felt by doing that people would like me. They would really, really like me.
I spent a great majority of my life seeking the approval of others. I wanted to be liked, loved. The time I spent in seminary studying to be a priest was when I felt the most affirmed, the most loved. Of course this desire to be affirmed showed itself in a lot of ways. I did some things very well. I wanted to be affirmed, so I was the best at whatever I needed to do. You needed me to preach, I was a good preacher. You needed me to be reverent, I was the holiest looking dude there. I was fairly well organized, so I was efficient; people knew they could come to me get things done. I was good.
This desire to be affirmed also meant that I did some things foolishly, even sinfully. I avoided confrontation, so I was never one to enforce the rules. I loved being the advocate, because I was able to be on your side, as long as you didn’t know that I really wasn’t advocating (because sometimes advocating meant confrontation, and I wouldn’t do that). This also meant that I was seeking affirmation in relationships in which I should not have been. And I hurt, betrayed, and confused a lot of people. I know it. The faces of the people that I hurt still float sometimes in and out of my consciousness.
When I left the priesthood, I sought counseling. I was talking with the counselor about this need for affirmation, and he said to me, “You had congregations, multiple congregations, which was hundreds or maybe thousands of people who loved you? Why didn’t you feel like that was ever good enough?”
It was one of those moments. You know the kind, the moments that hit us with clarity and change who we are. From the depth of my being, I heard my own voice cry out inside of me, “Because they’re not my father.”
My biological father abandoned my family when I was in kindergarten. My step-father’s love was always very conditional. I wanted the approval of a father, and I was seeking it everywhere else. The problem was, no matter how I sought it or from whom I sought it, it was never good enough, because it wasn’t his. This is not a psychobabble-blaming, poor me kind of thing. This was a real insight into a sub-conscious motivation into my aberrant behavior. When I gained this insight, it shed light on so much of what I had been struggling. It's not a blaming of my past or anyone in my past for my mistakes, but a consciousness and acknowledgement of a weakness in my personality that I need to guard against even to this day.
My desire for my father’s affirmation and seeking it from everywhere else made me a chameleon. I could change my colors and fit right in. I could be whoever I thought you wanted me to be in order to get you to like me.
That’s why I got ordained. I felt supported, affirmed, liked, and loved while studying in the seminary in a way that I never felt while I was not in seminary. This carried over into my priesthood. Needless to say, my house was built on sand. The desire for affirmation was not enough to be able to sustain my ministry or keep me faithful.
My relationship with Lesley was different. She was different. I’m not sure what happened. No matter what face I tried to put out there, she saw through it. She was the first person that I had met who could see through me. At least, I thought she was. She saw through the masks I wore, and she was the first person that I ever felt truly loved me for me, which was weird. I felt (wrongly because of my own “issues”) that others would only love or like the “me” I presented. The weird thing was, people did only like or love the “me” I presented, because I would not present the real me. It was a cyclic thing. I was frustrated because I didn’t feel anyone really liked or loved the real me. I never let the real me out there for people to like or love.
For whatever reason, I knew that Lesley loved me, the real me. This is why I loved spending time with her. I couldn’t pretend when I was around her. I had to be me, because she saw through all the pretense.
Our feelings for each other deepened. It sounds immature and cliché, but we fell in love. Being in love is not immature, though. It cannot replace the commitment of actually loving someone. What I’ve known for a long time is that while the feelings of “being in love” intensify and dissipate with the phases of the moon or whatever other influence is happening in my life, I choose to love her. Being “in love” is the romantic, warm fuzzy feelings. Loving someone is the committed choice to be for another. I make that choice whether I am “in love” with her at a particular moment or not. The times when I look at her and am swept away with that romantic feeling are icing on the cake. The commitment to share my life with her is the cake. Both are good by themselves. They are awesome when they are together.
Anyway, our feelings for each other deepened and we acted foolishly and sinfully. I had a conversation with someone shortly after I left the priesthood. This person was asking intimate and extremely personal questions about the sexual relationship I had with Lesley. This person wasn’t the only one who wanted details, but was the only one who came right out and asked me. I found that both Lesley and I became the centerpiece for gossip in Jefferson City, the (gossip) capitol of Missouri.
For some reason, people felt they had a right to know that information, and when they couldn’t get it from the source, they made it up. It’s no secret that our relationship was sexual. Lesley conceived Jacob. I can’t really hide that fact. Don’t expect to get any tawdry details of it though. If you’re reading this for that kind of info, you’re going to be as disappointed as if you had picked up Augustine’s “Confessions” thinking it would read like a true crime novel.
It’s been five years since I left the priesthood, but I honestly don’t think of it as “leaving the priesthood.” It’s been five years since I committed myself to the most beautiful woman I’ve ever known. It’s been five years since I started a life of authenticity. I’ve decided that my life shouldn’t be about moving from something, leaving something. Life is about moving toward something. It’s directed and purposeful.
I don’t feel like there is anything I need to hide anymore, nothing I’m leaving in the dark. Over the past 5 years, I’ve been learning to live authentically. Lesley and my kids force me to do that. Lesley always challenges me not to hide things from her. I still have that inclination at times. It’s deeply engrained into my being from my years growing up. That’s really more than I care to get into at this time. Suffice it to say, hiding the whole truth was so deeply engrained into my behavior patterns from my experience as a child that whenever I am in a stressful situation now as an adult, I default into that mode. I have to confront consciously, even to this day, the temptation “to forget” certain details whenever I have to admit that I’m not exactly the way I want to be, or have done something hurtful. Some wounds take a very long time to heal.
Through it all, Lesley and I have held fast to our faith. What else can we do? The Eucharist is the source and summit of the Christian Life. I was with someone on Holy Thursday this past year, and the person asked me why I continue to attend the Catholic Church when I can’t receive communion. I responded, “I know in the depth of my heart that this bread and wine become the real and true body and blood of Jesus Christ. While I may not be able to receive communion at this time, I still want to be in His real and true sacramental presence.” I believe in the sacraments, even though at this time I cannot participate in them. I believe in them completely and fully, having experienced the power of their grace not only in my own life, but in the lives of those to whom I ministered them. The sacraments are why I am Catholic.
I still cling to some of the ideals that I tried to live as a priest. For example, occasionally you will still see me dressed in all black clothing. The clerical garb of the priest, the “blacks,” was originally a sign of priestly poverty. Priests did not get paid for being priests. The only income they received was the yearly Christmas collection. Many priests were poor because of this, so they would buy the cheapest kind of cloth they could afford to make their clothing. The cheapest kind of cloth happened to be black wool, so they dressed in black. They would often wear white, linen undergarments because the wool was so scratchy, and would pull the white linen up through the collar so as not to get chaffed necks. Wearing black became a symbol of detachment from the things of this world. I still wear all black, occasionally, because I am a Johnny Cash fan, but more importantly, because of its symbolic representation of detachment from this world, of spiritual poverty.
One of the most annoying things about being “an ex-priest” are the people who think they’ve found an ally in Catholic bashing. It happens explicitly and subtly. Most recently, we had a social worker come to our house to discuss financial options for managing Nathaniel’s illness. He came with the nurse from the Hemophilia Treatment Center. He began the conversation by clarifying that I am the one who used to be the priest. Then he explained that he had studied in Catholic seminary once upon a time in preparation for becoming a priest. Then he proceeded to tell me that he left the seminary when the Church began clarifying its position against the use of artificial means of contraception. He stated that after studying the matter closely, he could not be ordained a representative of a group who had such a “foolish belief” as this. The arrogance of these statements always amazes me. Somehow this dude thought that his “study” made him wiser than the Church’s 2,000 years of experience of human nature and behavior, and smarter than the greatest theological minds that have lived for the past 2 millennia.
What bothered me the most is the expectation he had that I would jump right in to start talking about how wrong the Church is for this teaching. I stared at him when he brought this up. I refuse to respond to this bait.
There are so many people who, as soon as they hear I’ve left the ministry of the priesthood, think they can start Catholic bashing and I’m going to agree. So allow me to clarify:
I believe in One God, the Father Almighty, maker of heaven and earth.
I believe in Jesus Christ, His only Son, our Lord, who was conceived of the Virgin Mary by the power of the Holy Spirit. He suffered under Pontius Pilate, was crucified, died, and was buried. On the third day, he rose again in fulfilmment of the scriptures. He ascended into heaven and is seated at the right hand of the Father. From thence he shall come again to judge the living and the dead.
I believe in one, holy, catholic, and apostolic Church, which most fully subsists within the Catholic Church, but that finds manifestations among all Christian faiths, and that consists of all people baptized in the name of the Father, and of the Son, and of the Holy Spirit.
I believe that the scriptures are the inerrant Word of God and should be held up in estimation as equal to the Eucharist, the real and true sacramental presence of Jesus Christ in our midst.
I believe in the Eucharist, Reconciliation, and all of the Sacraments of the Church. I believe that while God has bound salvation to the sacraments (specifically baptism), God is not bound by that, and can save whomever he wishes to save by whatever means he wishes to save them.
I believe in an all-male, celibate priesthood.
I believe in being prolife from natural conception to natural death, and that artificial contraception is an affront to God’s will for human sexual behavior.
I believe in the College of Bishops and the Primacy of the Pope. I believe the pope, when speaking from "The Chair of Peter" is able to pronounce infallible teachings on matters of faith and morality.
I am Catholic to the core, despite the fact that I cannot at this time fully participate in the sacraments. My personal situation and my sin, which places me out of union with my Church at this time does not make what my Church teaches false. I will continue to defend her teachings, because no matter what situation in which I am, Truth does not change. I believe in the teachings of my Church, and I want to be reconciled with her.
I am working on that, as well. I’ve applied for laicization, which is to be released from the promises I made at the time of my ordination. I made those promises and committed the sin of blasphemy in them. I’m asking for forgiveness and reconciliation. In my heart of hearts, I am Catholic. I know that there is scandal in my situation, and am seeking to be reunited with my Church. It’s a waiting period now. My request for laicization has been submitted to the proper authorities. Now all I can do is wait for the approval or rejection. Lesley and I will have our marriage sacramentalized in the Church as soon as possible.
So there it is, 5 years out of the active ministry in a nutshell.
I don’t at this time want to hide the fact that I was ordained and served the Church as a priest. I am ashamed of some of the things I did during my ministry. I am sorry to and for the large number of people that I hurt and confused. I ask forgiveness from them and from my Church as a whole.
I want nothing more than to be reconciled so that Lesley and I can again receive communion. We were married because we decided that the stability of even a civil marriage was better than having Jacob grow up with parents who were not married.
In my heart of hearts I know that I can stand before God and say that I have acted rightly within the dictates of my conscience since leaving the priesthood, which is more than I could have said while I was active in ministry.
For the past 5 years, I’ve been living with greater integrity and authenticity than at any other time in my life. And, because of this, I’m happier now than at any other time in my life.
That’s where I am 5 years later.
I responded, “I knocked up the organist.”
The other counselor spit out her food laughing so hard and the one who asked the question sat up, straightened her skirt, and said, “Ok.”
She didn’t ask me anymore about it, which honestly surprised me.
I’ve been away from the priesthood for over 5 years now. It’s been a while since I reflected on the fact that I was a priest, and now am not. (At least, in a practical way. I understand that once a man is ordained, it is for eternity, an “indelible mark.” I am not active in ministry as a priest at this time). Maybe it’s time I returned to the subject.
I knew, prior to getting ordained, that I should not get ordained. I can say that with as much certainty as I can say that I’m sitting in this chair. There was that still, quiet voice in my conscience letting me know that I was doing something I shouldn’t have done. So if I had this dictate of conscience, why did I get ordained?
Approval. Affirmation. There’s any number of ways to describe the fundamental motive. I got ordained because I felt by doing that people would like me. They would really, really like me.
I spent a great majority of my life seeking the approval of others. I wanted to be liked, loved. The time I spent in seminary studying to be a priest was when I felt the most affirmed, the most loved. Of course this desire to be affirmed showed itself in a lot of ways. I did some things very well. I wanted to be affirmed, so I was the best at whatever I needed to do. You needed me to preach, I was a good preacher. You needed me to be reverent, I was the holiest looking dude there. I was fairly well organized, so I was efficient; people knew they could come to me get things done. I was good.
This desire to be affirmed also meant that I did some things foolishly, even sinfully. I avoided confrontation, so I was never one to enforce the rules. I loved being the advocate, because I was able to be on your side, as long as you didn’t know that I really wasn’t advocating (because sometimes advocating meant confrontation, and I wouldn’t do that). This also meant that I was seeking affirmation in relationships in which I should not have been. And I hurt, betrayed, and confused a lot of people. I know it. The faces of the people that I hurt still float sometimes in and out of my consciousness.
When I left the priesthood, I sought counseling. I was talking with the counselor about this need for affirmation, and he said to me, “You had congregations, multiple congregations, which was hundreds or maybe thousands of people who loved you? Why didn’t you feel like that was ever good enough?”
It was one of those moments. You know the kind, the moments that hit us with clarity and change who we are. From the depth of my being, I heard my own voice cry out inside of me, “Because they’re not my father.”
My biological father abandoned my family when I was in kindergarten. My step-father’s love was always very conditional. I wanted the approval of a father, and I was seeking it everywhere else. The problem was, no matter how I sought it or from whom I sought it, it was never good enough, because it wasn’t his. This is not a psychobabble-blaming, poor me kind of thing. This was a real insight into a sub-conscious motivation into my aberrant behavior. When I gained this insight, it shed light on so much of what I had been struggling. It's not a blaming of my past or anyone in my past for my mistakes, but a consciousness and acknowledgement of a weakness in my personality that I need to guard against even to this day.
My desire for my father’s affirmation and seeking it from everywhere else made me a chameleon. I could change my colors and fit right in. I could be whoever I thought you wanted me to be in order to get you to like me.
That’s why I got ordained. I felt supported, affirmed, liked, and loved while studying in the seminary in a way that I never felt while I was not in seminary. This carried over into my priesthood. Needless to say, my house was built on sand. The desire for affirmation was not enough to be able to sustain my ministry or keep me faithful.
My relationship with Lesley was different. She was different. I’m not sure what happened. No matter what face I tried to put out there, she saw through it. She was the first person that I had met who could see through me. At least, I thought she was. She saw through the masks I wore, and she was the first person that I ever felt truly loved me for me, which was weird. I felt (wrongly because of my own “issues”) that others would only love or like the “me” I presented. The weird thing was, people did only like or love the “me” I presented, because I would not present the real me. It was a cyclic thing. I was frustrated because I didn’t feel anyone really liked or loved the real me. I never let the real me out there for people to like or love.
For whatever reason, I knew that Lesley loved me, the real me. This is why I loved spending time with her. I couldn’t pretend when I was around her. I had to be me, because she saw through all the pretense.
Our feelings for each other deepened. It sounds immature and cliché, but we fell in love. Being in love is not immature, though. It cannot replace the commitment of actually loving someone. What I’ve known for a long time is that while the feelings of “being in love” intensify and dissipate with the phases of the moon or whatever other influence is happening in my life, I choose to love her. Being “in love” is the romantic, warm fuzzy feelings. Loving someone is the committed choice to be for another. I make that choice whether I am “in love” with her at a particular moment or not. The times when I look at her and am swept away with that romantic feeling are icing on the cake. The commitment to share my life with her is the cake. Both are good by themselves. They are awesome when they are together.
Anyway, our feelings for each other deepened and we acted foolishly and sinfully. I had a conversation with someone shortly after I left the priesthood. This person was asking intimate and extremely personal questions about the sexual relationship I had with Lesley. This person wasn’t the only one who wanted details, but was the only one who came right out and asked me. I found that both Lesley and I became the centerpiece for gossip in Jefferson City, the (gossip) capitol of Missouri.
For some reason, people felt they had a right to know that information, and when they couldn’t get it from the source, they made it up. It’s no secret that our relationship was sexual. Lesley conceived Jacob. I can’t really hide that fact. Don’t expect to get any tawdry details of it though. If you’re reading this for that kind of info, you’re going to be as disappointed as if you had picked up Augustine’s “Confessions” thinking it would read like a true crime novel.
It’s been five years since I left the priesthood, but I honestly don’t think of it as “leaving the priesthood.” It’s been five years since I committed myself to the most beautiful woman I’ve ever known. It’s been five years since I started a life of authenticity. I’ve decided that my life shouldn’t be about moving from something, leaving something. Life is about moving toward something. It’s directed and purposeful.
I don’t feel like there is anything I need to hide anymore, nothing I’m leaving in the dark. Over the past 5 years, I’ve been learning to live authentically. Lesley and my kids force me to do that. Lesley always challenges me not to hide things from her. I still have that inclination at times. It’s deeply engrained into my being from my years growing up. That’s really more than I care to get into at this time. Suffice it to say, hiding the whole truth was so deeply engrained into my behavior patterns from my experience as a child that whenever I am in a stressful situation now as an adult, I default into that mode. I have to confront consciously, even to this day, the temptation “to forget” certain details whenever I have to admit that I’m not exactly the way I want to be, or have done something hurtful. Some wounds take a very long time to heal.
Through it all, Lesley and I have held fast to our faith. What else can we do? The Eucharist is the source and summit of the Christian Life. I was with someone on Holy Thursday this past year, and the person asked me why I continue to attend the Catholic Church when I can’t receive communion. I responded, “I know in the depth of my heart that this bread and wine become the real and true body and blood of Jesus Christ. While I may not be able to receive communion at this time, I still want to be in His real and true sacramental presence.” I believe in the sacraments, even though at this time I cannot participate in them. I believe in them completely and fully, having experienced the power of their grace not only in my own life, but in the lives of those to whom I ministered them. The sacraments are why I am Catholic.
I still cling to some of the ideals that I tried to live as a priest. For example, occasionally you will still see me dressed in all black clothing. The clerical garb of the priest, the “blacks,” was originally a sign of priestly poverty. Priests did not get paid for being priests. The only income they received was the yearly Christmas collection. Many priests were poor because of this, so they would buy the cheapest kind of cloth they could afford to make their clothing. The cheapest kind of cloth happened to be black wool, so they dressed in black. They would often wear white, linen undergarments because the wool was so scratchy, and would pull the white linen up through the collar so as not to get chaffed necks. Wearing black became a symbol of detachment from the things of this world. I still wear all black, occasionally, because I am a Johnny Cash fan, but more importantly, because of its symbolic representation of detachment from this world, of spiritual poverty.
One of the most annoying things about being “an ex-priest” are the people who think they’ve found an ally in Catholic bashing. It happens explicitly and subtly. Most recently, we had a social worker come to our house to discuss financial options for managing Nathaniel’s illness. He came with the nurse from the Hemophilia Treatment Center. He began the conversation by clarifying that I am the one who used to be the priest. Then he explained that he had studied in Catholic seminary once upon a time in preparation for becoming a priest. Then he proceeded to tell me that he left the seminary when the Church began clarifying its position against the use of artificial means of contraception. He stated that after studying the matter closely, he could not be ordained a representative of a group who had such a “foolish belief” as this. The arrogance of these statements always amazes me. Somehow this dude thought that his “study” made him wiser than the Church’s 2,000 years of experience of human nature and behavior, and smarter than the greatest theological minds that have lived for the past 2 millennia.
What bothered me the most is the expectation he had that I would jump right in to start talking about how wrong the Church is for this teaching. I stared at him when he brought this up. I refuse to respond to this bait.
There are so many people who, as soon as they hear I’ve left the ministry of the priesthood, think they can start Catholic bashing and I’m going to agree. So allow me to clarify:
I believe in One God, the Father Almighty, maker of heaven and earth.
I believe in Jesus Christ, His only Son, our Lord, who was conceived of the Virgin Mary by the power of the Holy Spirit. He suffered under Pontius Pilate, was crucified, died, and was buried. On the third day, he rose again in fulfilmment of the scriptures. He ascended into heaven and is seated at the right hand of the Father. From thence he shall come again to judge the living and the dead.
I believe in one, holy, catholic, and apostolic Church, which most fully subsists within the Catholic Church, but that finds manifestations among all Christian faiths, and that consists of all people baptized in the name of the Father, and of the Son, and of the Holy Spirit.
I believe that the scriptures are the inerrant Word of God and should be held up in estimation as equal to the Eucharist, the real and true sacramental presence of Jesus Christ in our midst.
I believe in the Eucharist, Reconciliation, and all of the Sacraments of the Church. I believe that while God has bound salvation to the sacraments (specifically baptism), God is not bound by that, and can save whomever he wishes to save by whatever means he wishes to save them.
I believe in an all-male, celibate priesthood.
I believe in being prolife from natural conception to natural death, and that artificial contraception is an affront to God’s will for human sexual behavior.
I believe in the College of Bishops and the Primacy of the Pope. I believe the pope, when speaking from "The Chair of Peter" is able to pronounce infallible teachings on matters of faith and morality.
I am Catholic to the core, despite the fact that I cannot at this time fully participate in the sacraments. My personal situation and my sin, which places me out of union with my Church at this time does not make what my Church teaches false. I will continue to defend her teachings, because no matter what situation in which I am, Truth does not change. I believe in the teachings of my Church, and I want to be reconciled with her.
I am working on that, as well. I’ve applied for laicization, which is to be released from the promises I made at the time of my ordination. I made those promises and committed the sin of blasphemy in them. I’m asking for forgiveness and reconciliation. In my heart of hearts, I am Catholic. I know that there is scandal in my situation, and am seeking to be reunited with my Church. It’s a waiting period now. My request for laicization has been submitted to the proper authorities. Now all I can do is wait for the approval or rejection. Lesley and I will have our marriage sacramentalized in the Church as soon as possible.
So there it is, 5 years out of the active ministry in a nutshell.
I don’t at this time want to hide the fact that I was ordained and served the Church as a priest. I am ashamed of some of the things I did during my ministry. I am sorry to and for the large number of people that I hurt and confused. I ask forgiveness from them and from my Church as a whole.
I want nothing more than to be reconciled so that Lesley and I can again receive communion. We were married because we decided that the stability of even a civil marriage was better than having Jacob grow up with parents who were not married.
In my heart of hearts I know that I can stand before God and say that I have acted rightly within the dictates of my conscience since leaving the priesthood, which is more than I could have said while I was active in ministry.
For the past 5 years, I’ve been living with greater integrity and authenticity than at any other time in my life. And, because of this, I’m happier now than at any other time in my life.
That’s where I am 5 years later.
Tuesday, October 11, 2011
Anonymous Comments
I recently had someone, despite the disclaimer on the side of my blog that I would not post anonymous comments, post 2 comments anonymously (At least, I assume it was the same person, as they were left on the same article at nearly the same time). I will not post them on my blog. I want to review, however, why.
I will not post anonymous comments for one main reason. I have an expectation that people take responsibility for what they say. The person commented that it seems contrary "to what blogging is about" that I should not allow anonymous comments. I guess that depends on what you think a blog is. For me, a blog is my way to communicate with others. If you want to communicate back, feel free, but take responsibility for what you say. I've had a really, really bad experience in the past with people being able to leave anonymous comments that were insulting, degrading, and downright mean. By commenting anonymously, they can say whatever they want to say and pretend everywhere else to be nice. I have no interest in allowing that kind of interchange on my blog. Respect is my number 1 rule. And it's MY blog, so I'll do with it what I want. If you want your comment posted, attach your name.
The person ended the critique of my decision not to allow anonymous comments with "Weak." I'm of the exact opposite opinion. Weakness is hiding behind anonymity so that you cannot be held accountable for what you say. Real strength is saying what you have to say and letting others know that you have said it.
I can only assume that it was the same person that left the suggestion that I blog about why I'm not a priest anymore. Suggestion noted. I'm not saying I will blog about that, but it is something on which I have not reflected in a long time. I've now been away from the active ministry as a priest for 5 years. Perhaps it's time to return to the subject with 5 years of family experience behind me.
Any thoughts (non-anonymously offered) are appreciated.
I will not post anonymous comments for one main reason. I have an expectation that people take responsibility for what they say. The person commented that it seems contrary "to what blogging is about" that I should not allow anonymous comments. I guess that depends on what you think a blog is. For me, a blog is my way to communicate with others. If you want to communicate back, feel free, but take responsibility for what you say. I've had a really, really bad experience in the past with people being able to leave anonymous comments that were insulting, degrading, and downright mean. By commenting anonymously, they can say whatever they want to say and pretend everywhere else to be nice. I have no interest in allowing that kind of interchange on my blog. Respect is my number 1 rule. And it's MY blog, so I'll do with it what I want. If you want your comment posted, attach your name.
The person ended the critique of my decision not to allow anonymous comments with "Weak." I'm of the exact opposite opinion. Weakness is hiding behind anonymity so that you cannot be held accountable for what you say. Real strength is saying what you have to say and letting others know that you have said it.
I can only assume that it was the same person that left the suggestion that I blog about why I'm not a priest anymore. Suggestion noted. I'm not saying I will blog about that, but it is something on which I have not reflected in a long time. I've now been away from the active ministry as a priest for 5 years. Perhaps it's time to return to the subject with 5 years of family experience behind me.
Any thoughts (non-anonymously offered) are appreciated.
Wednesday, September 28, 2011
10 Decisions That Have Made Me a Happier Person (More or Less)
10. I've decided to buy a lawn mower.
9. I've decided to be one of those die hard St. Louis Cardinals Fans that paints his face and says, "Well, we're in a rebuilding season," whenever they suck.
8. I've decided to carry an air pump in the back of whatever vehicle in which I happen to be. I'm sure Lesley and friends with whom I ride will be annoyed, but I figure an air pump is like a gun: It's better to have one and not need it, than to need one and not have it.
7. I've decided to keep a "to do" list. It will be a piece of paper folded into 4 quadrants. Quadrant 1 are things that are important and emergent. Quadrant 2 are things that are important, but not emergent. Quadrant 3 are things that are not important, but emergent. Quadrant 4 is a list of names of people out of whom I would like to beat the living crap.
6. I've decided that under no circumstances will I ever again end a sentence with a preposition.
5. I've decided to get one of those support yard signs that says, "SUPPORT YARD SIGNS!" The exclamation point is important.
4. I've decided that exclamation points are important. That one just came to me.
3. I've decided to be a pessimist. That way I will spend my days in a pleasant state of surprise that things aren't nearly as bad as I thought they would be.
2. All of those emails I get in which people tell me about what offensive thing this person has done and how this group or company is about to screw me: I used to reply only to the sender with the appropriate http://www.snopes.com/ article debunking the particular myth or falsehood the email perpetuates. I've decided to start hitting "reply all." This serves 2 purposes: 1) It lets everyone else who received the email know it's a bunch of crap, and 2) It embarrasses the sender (hopefully enough to stop including me on those stupid emails).
1. Apparently there a lot of people who don't know when I'm joking with them and when I'm being serious. I've decided to stop telling them. This gives me a sadistic kind of pleasure.
9. I've decided to be one of those die hard St. Louis Cardinals Fans that paints his face and says, "Well, we're in a rebuilding season," whenever they suck.
8. I've decided to carry an air pump in the back of whatever vehicle in which I happen to be. I'm sure Lesley and friends with whom I ride will be annoyed, but I figure an air pump is like a gun: It's better to have one and not need it, than to need one and not have it.
7. I've decided to keep a "to do" list. It will be a piece of paper folded into 4 quadrants. Quadrant 1 are things that are important and emergent. Quadrant 2 are things that are important, but not emergent. Quadrant 3 are things that are not important, but emergent. Quadrant 4 is a list of names of people out of whom I would like to beat the living crap.
6. I've decided that under no circumstances will I ever again end a sentence with a preposition.
5. I've decided to get one of those support yard signs that says, "SUPPORT YARD SIGNS!" The exclamation point is important.
4. I've decided that exclamation points are important. That one just came to me.
3. I've decided to be a pessimist. That way I will spend my days in a pleasant state of surprise that things aren't nearly as bad as I thought they would be.
2. All of those emails I get in which people tell me about what offensive thing this person has done and how this group or company is about to screw me: I used to reply only to the sender with the appropriate http://www.snopes.com/ article debunking the particular myth or falsehood the email perpetuates. I've decided to start hitting "reply all." This serves 2 purposes: 1) It lets everyone else who received the email know it's a bunch of crap, and 2) It embarrasses the sender (hopefully enough to stop including me on those stupid emails).
1. Apparently there a lot of people who don't know when I'm joking with them and when I'm being serious. I've decided to stop telling them. This gives me a sadistic kind of pleasure.
Wednesday, September 21, 2011
My Novena Begins
In the Catholic Church, we have these weird things like novenas and octaves. For example, Christmas and Easter are considered such high holy days that the celebration cannot be limited to a 24 hour period, so we celebrate them as an octave. Each day of the octave, including the actual day of celebration and the next 7 days after (for a total of 8 days), is given the same honor as the main date of celebration. December 26, for the Catholic Church, is as much Christmas Day (at least liturgically speaking) as December 25. And so is December 30. The Wednesday after Easter is as much "Easter Sunday" as...well...Easter Sunday.
A novena traditionally has been used as a means of preparation. We normally celebrate novenas the 9 days prior to a special event. At Kenrick-Glennon Seminary, we celebrated the Christmas Novena during Advent, which were 9 days of special prayers and "para-liturgy" with music, scriptures, and spiritual reflections in preparation for Christmas. Carmelite convents often celebrate a novena the 9 days prior to the feast of St. Theresa of Avila, the great mystic and reformer of the Carmelite order.
Today, September 21, the novena in preparation of my birthday begins. September 21-29, I celebrate in preparation of the fact that I was born on September 30. Then September 30-October 7 is the Octave of My Birth. This may seem a little bit narcissistic and self-aggrandizing...ok, it seems a lot narcissistic and self-aggrandizing, but let me explain.
I did not have to be born.
First, God did not have to see fit in his infinite wisdom that I exist at all. I could not have done anything prior to my birth that made me deserve this special gift of God that is life. I can guarantee that I have not done anything since I was born to deserve it (and sometimes I think I've done things that should have forfeited it). God created me out of the pure gift of His Love. That's it. Bottom line. End of story. I am alive because God loves me. So my celebration is not so much about me as it is a way for me to call to mind the incredible gift of my God's love.
Second, Roe Vs. Wade was adjudicated in January of 1973. I was born in September of 1973. That means that my mother could have chosen to abort me. I don't believe for a second that the thought ever even crossed her mind. Well, maybe for one second when my 10 and a half pound carcass came squeezing through, she may have thought, "Why the hell did I let this happen?" But I doubt it. But the fact remains that she was legally allowed to make that choice, and she didn't. That, too, was a gift of love. Having seen my own wife go through pregnancy has given me a new appreciation for what a gift of love a mother gives during those 9 months, and the years following. So I celebrate my mother's love.
Third, everything in my life is a gift. So I spend the Novena preparing for and Octave of My Birth remembering the gifts I have been given, life, Lesley, my kids, my home, my next breath, by giving gifts. I try each day of the Octave to give something to someone. I make a conscious effort to find an opportunity to make some small contribution to another person's life. It can be something as insignificant as springing for a diet coke. Each day, I try to stay mindfully aware of the opportunities I have to give to another. "Without cost you have received; without cost you are to give" (Matthew 10:8b).
So here it is: The Novena in Preparation of My Birth has begun.
I love the gift of my life.
A novena traditionally has been used as a means of preparation. We normally celebrate novenas the 9 days prior to a special event. At Kenrick-Glennon Seminary, we celebrated the Christmas Novena during Advent, which were 9 days of special prayers and "para-liturgy" with music, scriptures, and spiritual reflections in preparation for Christmas. Carmelite convents often celebrate a novena the 9 days prior to the feast of St. Theresa of Avila, the great mystic and reformer of the Carmelite order.
Today, September 21, the novena in preparation of my birthday begins. September 21-29, I celebrate in preparation of the fact that I was born on September 30. Then September 30-October 7 is the Octave of My Birth. This may seem a little bit narcissistic and self-aggrandizing...ok, it seems a lot narcissistic and self-aggrandizing, but let me explain.
I did not have to be born.
First, God did not have to see fit in his infinite wisdom that I exist at all. I could not have done anything prior to my birth that made me deserve this special gift of God that is life. I can guarantee that I have not done anything since I was born to deserve it (and sometimes I think I've done things that should have forfeited it). God created me out of the pure gift of His Love. That's it. Bottom line. End of story. I am alive because God loves me. So my celebration is not so much about me as it is a way for me to call to mind the incredible gift of my God's love.
Second, Roe Vs. Wade was adjudicated in January of 1973. I was born in September of 1973. That means that my mother could have chosen to abort me. I don't believe for a second that the thought ever even crossed her mind. Well, maybe for one second when my 10 and a half pound carcass came squeezing through, she may have thought, "Why the hell did I let this happen?" But I doubt it. But the fact remains that she was legally allowed to make that choice, and she didn't. That, too, was a gift of love. Having seen my own wife go through pregnancy has given me a new appreciation for what a gift of love a mother gives during those 9 months, and the years following. So I celebrate my mother's love.
Third, everything in my life is a gift. So I spend the Novena preparing for and Octave of My Birth remembering the gifts I have been given, life, Lesley, my kids, my home, my next breath, by giving gifts. I try each day of the Octave to give something to someone. I make a conscious effort to find an opportunity to make some small contribution to another person's life. It can be something as insignificant as springing for a diet coke. Each day, I try to stay mindfully aware of the opportunities I have to give to another. "Without cost you have received; without cost you are to give" (Matthew 10:8b).
So here it is: The Novena in Preparation of My Birth has begun.
I love the gift of my life.
Thursday, September 15, 2011
Obama's Latest Failure Plan
Someone made the comment after hearing Obama's "Jobs Plan" speech to the joint congress, "Why didn't he give that speech 2 years ago?"
I said, "He did."
Obama's stimulus package when he first took office was 800 BILLION dollars to be dispersed for building of infrastructure, schools, and "investments" in clean energy. That was when unemployment was still at 8%. By making these "investments," he promised to put people back to work.
Well, 2 years later, unemployment is over 9%, which his administration has said should be the new expected normal. He wants to throw 450 BILLION dollars at what? Oh yeah, infrastructure, schools, and "investments" in clean energy companies. I wonder if it will be the same kinds of companies like the one being investigated now for defrauding the government out of 500 million dollars by cooking its books. (And Obama's administration's blaming of Bush's administration since the application was originally received during Bush's term is so characteristic it's become cliche.)
Obama gave this speech 2 years ago, and his 800 BILLION dollar "investment" didn't pay off. Unemployment rose. Congress had to increase the debt ceiling to keep us from going into default on the 16 TRILLION dollar deficit. And the economy is less stable now than it was when he took office.
What makes him think throwing 450 BILLION dollars more at it will help?
Obama is a fool in the biblical sense of the word.
And, frankly, I'm tired of his lies. "It's paid for," he says. Then charges the "supercommittee" overseeing budget reform to figure out how. I want an iPad. I'm currently trying to figure out how to pay for it.Why? Because I don't have it paid for. If I had it paid for already, I'd have it already! Does this make anybody else mad? I mean, seriously. Why do I feel so alone in being outraged?
I hate to say this, but I had this impression 2 years ago. Obama considers money like many of the mentally ill clients I have worked with through the years. One of the basic principles of budgeting that I tried to teach my clients in community support work:
When creating a budget, you don't start by listing all of the things you WANT, and then try to figure out how to pay for it. You start with the amount of money you HAVE, and then figure out what you can afford.
I don't blame Obama solely for this. The government has been practicing this ack-bass-words way of budgeting since FDR. But at some point, the cycle has to stop. The government in general is driving this nation over a cliff. Obama is the latest in a long history of irresponsible managers. I will state Obama's has been the most agregious. He was blaming Bush when he came to office for the deficit Bush created in 8 years of office. Obama then created the same amount as Bush in 2 and a half years.
Obama's answer to the "revenue shortfall," increasing "government revenue." That means higher taxes, folks. Right now, the poorest 50% of people in the United States pay NO taxes. The top 10% pay over 80% of taxes. Obama wants to tax the rich.
Here's a simple question: How much out of every dollar that you make do you think you deserve to keep?
Follow up question: Why should that amount be any different for any other person?
I heard a statement recently that made sense to me: In the United States, the government is a collaborative work of the people. The government does the work the people have decided needs to be done. That requires the people to pay for that work. So I think we should take a step back from the debate about "cutting spending vs. raising taxes" and have a more fundamental discussion:
What do WE THE PEOPLE define as the work of government?
That's a question for another blog post that I will write soon. But for now, I can tell you this: the answer was adopted on September 17, 1787.
I said, "He did."
Obama's stimulus package when he first took office was 800 BILLION dollars to be dispersed for building of infrastructure, schools, and "investments" in clean energy. That was when unemployment was still at 8%. By making these "investments," he promised to put people back to work.
Well, 2 years later, unemployment is over 9%, which his administration has said should be the new expected normal. He wants to throw 450 BILLION dollars at what? Oh yeah, infrastructure, schools, and "investments" in clean energy companies. I wonder if it will be the same kinds of companies like the one being investigated now for defrauding the government out of 500 million dollars by cooking its books. (And Obama's administration's blaming of Bush's administration since the application was originally received during Bush's term is so characteristic it's become cliche.)
Obama gave this speech 2 years ago, and his 800 BILLION dollar "investment" didn't pay off. Unemployment rose. Congress had to increase the debt ceiling to keep us from going into default on the 16 TRILLION dollar deficit. And the economy is less stable now than it was when he took office.
What makes him think throwing 450 BILLION dollars more at it will help?
Obama is a fool in the biblical sense of the word.
And, frankly, I'm tired of his lies. "It's paid for," he says. Then charges the "supercommittee" overseeing budget reform to figure out how. I want an iPad. I'm currently trying to figure out how to pay for it.Why? Because I don't have it paid for. If I had it paid for already, I'd have it already! Does this make anybody else mad? I mean, seriously. Why do I feel so alone in being outraged?
I hate to say this, but I had this impression 2 years ago. Obama considers money like many of the mentally ill clients I have worked with through the years. One of the basic principles of budgeting that I tried to teach my clients in community support work:
When creating a budget, you don't start by listing all of the things you WANT, and then try to figure out how to pay for it. You start with the amount of money you HAVE, and then figure out what you can afford.
I don't blame Obama solely for this. The government has been practicing this ack-bass-words way of budgeting since FDR. But at some point, the cycle has to stop. The government in general is driving this nation over a cliff. Obama is the latest in a long history of irresponsible managers. I will state Obama's has been the most agregious. He was blaming Bush when he came to office for the deficit Bush created in 8 years of office. Obama then created the same amount as Bush in 2 and a half years.
Obama's answer to the "revenue shortfall," increasing "government revenue." That means higher taxes, folks. Right now, the poorest 50% of people in the United States pay NO taxes. The top 10% pay over 80% of taxes. Obama wants to tax the rich.
Here's a simple question: How much out of every dollar that you make do you think you deserve to keep?
Follow up question: Why should that amount be any different for any other person?
I heard a statement recently that made sense to me: In the United States, the government is a collaborative work of the people. The government does the work the people have decided needs to be done. That requires the people to pay for that work. So I think we should take a step back from the debate about "cutting spending vs. raising taxes" and have a more fundamental discussion:
What do WE THE PEOPLE define as the work of government?
That's a question for another blog post that I will write soon. But for now, I can tell you this: the answer was adopted on September 17, 1787.
Friday, September 09, 2011
What's In a Name
I work in the mental health and substance abuse/addiction field. Over the last several years, there has developed a new awareness of labels. Instead of "schizophrenic," we're supposed to say "a person with schizophrenia." Instead of "addict," we're supposed to say "a person with addiction," or "a person with substance abuse/dependence." Instead of calling a person a "borderline," we're supposed to say, "a person with borderline personality disorder."
You get the idea.
The purpose for this is to avoid a label which identifies a person as one thing, and one thing only. To call a person with schizophrenia a "schizophrenic" suggests, according to the argument, that the person is defined by his or her schizophrenia, and that is the sum total of what they are. Of course a person with schizophrenia is multifaceted. Many work, have families, enjoy hobbies, and are active in their churches and communities. The proponents of the label awareness group state that because that is not all a person is, we should not define them by that. They should be thought of as a person with an illness, rather than the illness itself. Another reason is that so many of these mental health and substance use illnesses have stigma attached, it's a way of combating the stigma.
I'm not much for political correctness anyway, but this is another example of the perceptions of some dictating the reality for all.
Let me reframe this: I can say pretty confidently that I am a husband. Does that suggest in any way that this is the sum total of my identity? I am a father. Is that all I am? I don't have to say that I am a person who is married or a person with children, to understand that while these are essential features of what make me who I am, they are not the sum total of my identity. I am Catholic. That's not all I am. That religious label leaves out the idea that I am male, that I am married, that I have children, that I'm a counselor, and that I ride a motorcycle. I don't have a problem saying I'm Catholic, though. It's part of me.
Nathaniel is a hemophiliac. It doesn't matter whether I call him "a hemophiliac" or "a person with hemophilia." What I call him has no power over who he is or over his conditon. Do I want Nathaniel to be defined solely by his illness? Of course not. But calling him a hemophiliac no more defines him than calling him a Catholic. They are both important pieces of his identity, but neither name him as the sum total of who he is.
Some would say that the stigma about being married, having children, being a male or being Catholic is not like the stigma attached to mental health diagnoses. I would argue that anybody that thinks there's not a stigma attached to being Catholic is kidding himself. And if you think I'm not stigmatized when I tell people that I'm a biker in a motorcycle club, well...you are more open minded than most.
Seriously, the real issue is not what we call people. The idea that a name gives to a thing its essential quality is called nominalism. This is a strain of philosophy that states (simplistically put) that we assign a thing its essence by naming it. We all know that what I call a thing has nothing to do with the thing's essence. It's just a word that identifies it. "What's in a name?" quipped Shakespeare's Juliet, "That which we call a rose by any other name would smell as sweet." What we call something has no power either to define or to change a thing's essence. If we perceive schizophrenia or addiction or hemophilia or down's syndrome or Catholic or Baptist or Republican or Democrat as negative, calling it something else is not going to change what we perceive to be the negative qualities of that condition.
The real problem is the attitudes of some towards those with mental health diagnoses, or physical disability, or mental handicap, or differing religious or political views. I do not believe we can change a person's mind by changing the language that we use to talk about it. I've seen it too often: the look that glazes over some people's faces when I talk about addicts. It doesn't matter to these people whether I say "addict" or "a person with addiction." No matter what I call it, the negative response is the same. Whether I say "addict" or "a person with addiction", they hear someone with weak will power who should just be able to quit. It even exists within circles of the same group. For example, I work specifically in methadone assisted treatment with opioid addicts. As soon as I say that, other addicts get a look on their faces like I'm a drug pusher helping an opioid addict stay addicted, just switching the heroin for methadone. Stigma exist. Changing our language is not going to help confront the stigma.
What does help confront and resolve the stigma is honest conversation. We do not have to work at word games. When I experience stigma against my opioid addicts because they are receiving methadone assisted treatment, I meet it squarely. I open up the conversation and give accurate information. So often the reason for stigma against something is because those with stigma are uninformed. Accurate information does more to dissipate stigma than any word games we can play.
How do I keep Nathaniel's hemophilia from being the sole factor of his identity? I put it in perspective. I do not deny that he has hemophilia, and I'm willing to talk to anyone about it who doesn't understand it (giving information about it). I also will not allow him to define himself by it. As he grows, Lesley and I will give him information about it. I like Dirty Harry's idea, "A man's gotta know his limitations." As Nathaniel grows, I will encourage him to define his own boundaries, his own identity. He will, slowly and in age appropriate ways, decide what his hemophilia means to him, and how it will affect his behaviors. My job will be to give him age appropriate information about what hemophilia is and what consequences his behaviors may produce. He will be free age-appropriately to choose what to do and what no to do, and he will be responsible for the consequences.
I'm already fighting the fight against stigma with some family members about hypothetical situations in his life. On what playground equipment should he be allowed to play? Should he be allowed to ride a bicycle? In what sports activities should he participate? They all want to define these according to his hemophilia. I prefer that he should define these according to him.
In the end, we cannot be defined by one thing, no matter how essential that thing is to us. I would not be who I am if I were not Lesley's husband or Jacob, Caitlin and Nathaniel's father. These are essential to my identity. They are interrelated. I would not be Jacob, Caitlin or Nathaniel's father if it weren't for me first being Lesley's husband. Neither of these labels, however, define me exclusively. If anything were to happen, God forbid, to Lesley, I would still be my children's father. The same is true of being Lesley's husbad if we had no children. One label is not the sum total of who I am. Nathaniel's label of hemophilia is not the sum total of who he is. A person's addiction, mental health impairment, handicap, religious or political affiliation is not the sole criteria of the person's being. So suggesting that using label to describe a person necessarily excludes all other possiblities of the person's identity is inauthentic.
In the end, if I don't like a label, maybe what I should be changing is my own attitude toward those with that label. It's a lot easier to change myself than it is to change an entire language. And maybe by changing myself, I might be able to help others change, too.
You get the idea.
The purpose for this is to avoid a label which identifies a person as one thing, and one thing only. To call a person with schizophrenia a "schizophrenic" suggests, according to the argument, that the person is defined by his or her schizophrenia, and that is the sum total of what they are. Of course a person with schizophrenia is multifaceted. Many work, have families, enjoy hobbies, and are active in their churches and communities. The proponents of the label awareness group state that because that is not all a person is, we should not define them by that. They should be thought of as a person with an illness, rather than the illness itself. Another reason is that so many of these mental health and substance use illnesses have stigma attached, it's a way of combating the stigma.
I'm not much for political correctness anyway, but this is another example of the perceptions of some dictating the reality for all.
Let me reframe this: I can say pretty confidently that I am a husband. Does that suggest in any way that this is the sum total of my identity? I am a father. Is that all I am? I don't have to say that I am a person who is married or a person with children, to understand that while these are essential features of what make me who I am, they are not the sum total of my identity. I am Catholic. That's not all I am. That religious label leaves out the idea that I am male, that I am married, that I have children, that I'm a counselor, and that I ride a motorcycle. I don't have a problem saying I'm Catholic, though. It's part of me.
Nathaniel is a hemophiliac. It doesn't matter whether I call him "a hemophiliac" or "a person with hemophilia." What I call him has no power over who he is or over his conditon. Do I want Nathaniel to be defined solely by his illness? Of course not. But calling him a hemophiliac no more defines him than calling him a Catholic. They are both important pieces of his identity, but neither name him as the sum total of who he is.
Some would say that the stigma about being married, having children, being a male or being Catholic is not like the stigma attached to mental health diagnoses. I would argue that anybody that thinks there's not a stigma attached to being Catholic is kidding himself. And if you think I'm not stigmatized when I tell people that I'm a biker in a motorcycle club, well...you are more open minded than most.
Seriously, the real issue is not what we call people. The idea that a name gives to a thing its essential quality is called nominalism. This is a strain of philosophy that states (simplistically put) that we assign a thing its essence by naming it. We all know that what I call a thing has nothing to do with the thing's essence. It's just a word that identifies it. "What's in a name?" quipped Shakespeare's Juliet, "That which we call a rose by any other name would smell as sweet." What we call something has no power either to define or to change a thing's essence. If we perceive schizophrenia or addiction or hemophilia or down's syndrome or Catholic or Baptist or Republican or Democrat as negative, calling it something else is not going to change what we perceive to be the negative qualities of that condition.
The real problem is the attitudes of some towards those with mental health diagnoses, or physical disability, or mental handicap, or differing religious or political views. I do not believe we can change a person's mind by changing the language that we use to talk about it. I've seen it too often: the look that glazes over some people's faces when I talk about addicts. It doesn't matter to these people whether I say "addict" or "a person with addiction." No matter what I call it, the negative response is the same. Whether I say "addict" or "a person with addiction", they hear someone with weak will power who should just be able to quit. It even exists within circles of the same group. For example, I work specifically in methadone assisted treatment with opioid addicts. As soon as I say that, other addicts get a look on their faces like I'm a drug pusher helping an opioid addict stay addicted, just switching the heroin for methadone. Stigma exist. Changing our language is not going to help confront the stigma.
What does help confront and resolve the stigma is honest conversation. We do not have to work at word games. When I experience stigma against my opioid addicts because they are receiving methadone assisted treatment, I meet it squarely. I open up the conversation and give accurate information. So often the reason for stigma against something is because those with stigma are uninformed. Accurate information does more to dissipate stigma than any word games we can play.
How do I keep Nathaniel's hemophilia from being the sole factor of his identity? I put it in perspective. I do not deny that he has hemophilia, and I'm willing to talk to anyone about it who doesn't understand it (giving information about it). I also will not allow him to define himself by it. As he grows, Lesley and I will give him information about it. I like Dirty Harry's idea, "A man's gotta know his limitations." As Nathaniel grows, I will encourage him to define his own boundaries, his own identity. He will, slowly and in age appropriate ways, decide what his hemophilia means to him, and how it will affect his behaviors. My job will be to give him age appropriate information about what hemophilia is and what consequences his behaviors may produce. He will be free age-appropriately to choose what to do and what no to do, and he will be responsible for the consequences.
I'm already fighting the fight against stigma with some family members about hypothetical situations in his life. On what playground equipment should he be allowed to play? Should he be allowed to ride a bicycle? In what sports activities should he participate? They all want to define these according to his hemophilia. I prefer that he should define these according to him.
In the end, we cannot be defined by one thing, no matter how essential that thing is to us. I would not be who I am if I were not Lesley's husband or Jacob, Caitlin and Nathaniel's father. These are essential to my identity. They are interrelated. I would not be Jacob, Caitlin or Nathaniel's father if it weren't for me first being Lesley's husband. Neither of these labels, however, define me exclusively. If anything were to happen, God forbid, to Lesley, I would still be my children's father. The same is true of being Lesley's husbad if we had no children. One label is not the sum total of who I am. Nathaniel's label of hemophilia is not the sum total of who he is. A person's addiction, mental health impairment, handicap, religious or political affiliation is not the sole criteria of the person's being. So suggesting that using label to describe a person necessarily excludes all other possiblities of the person's identity is inauthentic.
In the end, if I don't like a label, maybe what I should be changing is my own attitude toward those with that label. It's a lot easier to change myself than it is to change an entire language. And maybe by changing myself, I might be able to help others change, too.
Thursday, September 01, 2011
Wyman's Place in My Poem
Edited: The parts in italics below I added prior to going through my prepared remarks:
I wrote out what I wanted to say today and showed it to my wife. She told me I was remiss in not mentioning one of her favorite stories about Wyman that I told her. I forget where we were, but Wyman and I were at a public gathering of some kind, and someone that hadn't seen her in years walked up to her and made the remark, "You haven't changed a bit." Wyman was very gracious to her, and when the lady walked away, Wyman turned to me and said, "I hate it when people say that, because it means I looked older than dirt 10 years ago."
I remember the first time I met Dr. Wyman. I was a transfer student in to Lincoln and told her I wanted to study English Literature. She asked me what my favorite poem was. I told her Good Friday Riding Westward 1613 by John Donne. She responded, "Ooh, I'm going to like you."
I can’t tell you how honored I am that I was asked to speak today. I continued to call Dr. Wyman “Dr. Wyman” after I graduated from Lincoln. She and I were eating lunch together one day, and she asked me about that. I told her that it was kind of awkward for me to call her Linda, but I knew that “Dr. Wyman” was too formal. She said, “When you think of me in your head, what do you call me?” I said, “Usually just Wyman.” She said, “Well then, you should call me just Wyman.”
You’ll have to forgive me, that’s still the way I think of her in my head.
Wyman had a love for T.S. Eliot. That’s no secret to any one here. I can’t help but think of an image that T.S. Eliot used when he discussed the great literature of the ages. He used the image of a book shelf, in which a great work of literature takes its place. Of course, when you add a book to a book shelf, all of the other books in the book shelf need to be adjusted. The great works of literature do not stand alone, but stand with every other great work through out history, and affect our experience of all of those great works that came before and will come after.
Another image Eliot uses is a “sentence that is right, (where every word is at home, taking its place to support the others).” A word is just a word, but in the context of a sentence, it creates a commerce with all of the other words that both receives its beauty from them, and contributes beauty to them, until they all become poetry.
That is Wyman. Wyman’s life is a great work of literature among the lives of others.
Wyman is one of the” words” of my life that has contributed to the beauty of my life. I hope in some way I was able to contribute to the poetry of hers.
She dedicated her life to shedding light on the great writers and people that had come before her, and has had an impact on all of those who entered her wake and followed her. I know that she changed my life. She introduced me to Dylan Thomas and Ezra Pound and to her beloved T.S. Eliot. She helped me understand Gerard Manley Hopkins. Funny story about that. We were in the Modern Poetry Class reading Gerard Manley Hopkins. There was a young student in the class who considered himself enlightened. He offered a veiled criticism of Hopkins’s religious themes in his poetry one day by saying, “I love what he does with the language of his poetry. It’s sad that the focus of his writing was so narrow.” To which Wyman responded, “God, man, the universe, that’s pretty narrow.”
It wasn’t just by introducing me to literature that my life was changed. My life was changed by her very presence. She was there for me when a lot of other folks weren’t, or probably more accurately, she found a way in when I wouldn’t let a lot of other folks be there for me. She touched my life more deeply than I have words to express. She was one of those types of friends that we could go long periods without seeing each other, but when we would see each other, it was like we had never been apart. After one of our lunches together, I went home and wrote a poem that I dedicated to her. I hope you will indulge me if I read it to you. It’s called “Being: For LW.”
In the little restaurant
At the intersection of Smith and Grace
The clock on the far wall was broken.
We appreciated each other's company
By choosing to fall
Into a comfortable silence;
To stare out the window
Which allowed the breeze
To threaten our napkins;
To admire how wise the sky
For being blue,
The trees for being green,
The poets for using rhyme
(Or not).
When we did speak, we spoke nothing.
We worked our lunch about our plates,
But that was the extent of it.
The smell of fried chicken still takes me there,
Like incense reminding a monk of prayer.
I wrote that poem after that lunch that day and brought it to her. She said to me, "Wow, that turned into poetry fast." I said, "Wyman, it was poetry all along." She nodded her head and said, "Wasn't it though?"
The restaurant at which we ate that day really was on the corner of Smith Street and Grace Street. That’s one of those” coincidences” that seemed to follow Wyman everywhere she went.
I was asked if I would close with a prayer today. I will, but first I would like to read in a spirit of prayer the 5th segment of Little Gidding, which is Number 4 of T.S. Eliot’s 4 quartets:
“What we call the beginning is often the end
And to make and end is to make a beginning.
The end is where we start from. And every phrase
And sentence that is right (where every word is at home,
Taking its place to support the others,
The word neither diffident nor ostentatious,
An easy commerce of the old and the new,
The common word exact without vulgarity,
The formal word precise but not pedantic,
The complete consort dancing together)
Every phrase and every sentence is an end and a beginning,
Every poem an epitaph. And any action
Is a step to the block, to the fire, down the sea's throat
Or to an illegible stone: and that is where we start.
We die with the dying:
See, they depart, and we go with them.
We are born with the dead:
See, they return, and bring us with them.
The moment of the rose and the moment of the yew-tree
Are of equal duration. A people without history
Is not redeemed from time, for history is a pattern
Of timeless moments. So, while the light fails
On a winter's afternoon, in a secluded chapel
History is now and England.
With the drawing of this Love and the voice of this Calling
We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.
Through the unknown, unremembered gate
When the last of earth left to discover
Is that which was the beginning;
At the source of the longest river
The voice of the hidden waterfall
And the children in the apple-tree
Not known, because not looked for
But heard, half-heard, in the stillness
Between two waves of the sea.
Quick now, here, now, always—
A condition of complete simplicity
(Costing not less than everything)
And all shall be well and
All manner of thing shall be well
When the tongues of flame are in-folded
Into the crowned knot of fire
And the fire and the rose are one.”
Let us Pray: Eternal rest grant unto her, Oh Lord. And let perpetual shine upon her. May she rest in peace. Amen.
Besides this, the only other prayer I can offer is one of thanksgiving that I was blessed to know her: Thank you, Lord, for the opportunity to get to know this humble, beautiful woman. Thank you, God. Amen.
I wrote out what I wanted to say today and showed it to my wife. She told me I was remiss in not mentioning one of her favorite stories about Wyman that I told her. I forget where we were, but Wyman and I were at a public gathering of some kind, and someone that hadn't seen her in years walked up to her and made the remark, "You haven't changed a bit." Wyman was very gracious to her, and when the lady walked away, Wyman turned to me and said, "I hate it when people say that, because it means I looked older than dirt 10 years ago."
I remember the first time I met Dr. Wyman. I was a transfer student in to Lincoln and told her I wanted to study English Literature. She asked me what my favorite poem was. I told her Good Friday Riding Westward 1613 by John Donne. She responded, "Ooh, I'm going to like you."
I can’t tell you how honored I am that I was asked to speak today. I continued to call Dr. Wyman “Dr. Wyman” after I graduated from Lincoln. She and I were eating lunch together one day, and she asked me about that. I told her that it was kind of awkward for me to call her Linda, but I knew that “Dr. Wyman” was too formal. She said, “When you think of me in your head, what do you call me?” I said, “Usually just Wyman.” She said, “Well then, you should call me just Wyman.”
You’ll have to forgive me, that’s still the way I think of her in my head.
Wyman had a love for T.S. Eliot. That’s no secret to any one here. I can’t help but think of an image that T.S. Eliot used when he discussed the great literature of the ages. He used the image of a book shelf, in which a great work of literature takes its place. Of course, when you add a book to a book shelf, all of the other books in the book shelf need to be adjusted. The great works of literature do not stand alone, but stand with every other great work through out history, and affect our experience of all of those great works that came before and will come after.
Another image Eliot uses is a “sentence that is right, (where every word is at home, taking its place to support the others).” A word is just a word, but in the context of a sentence, it creates a commerce with all of the other words that both receives its beauty from them, and contributes beauty to them, until they all become poetry.
That is Wyman. Wyman’s life is a great work of literature among the lives of others.
Wyman is one of the” words” of my life that has contributed to the beauty of my life. I hope in some way I was able to contribute to the poetry of hers.
She dedicated her life to shedding light on the great writers and people that had come before her, and has had an impact on all of those who entered her wake and followed her. I know that she changed my life. She introduced me to Dylan Thomas and Ezra Pound and to her beloved T.S. Eliot. She helped me understand Gerard Manley Hopkins. Funny story about that. We were in the Modern Poetry Class reading Gerard Manley Hopkins. There was a young student in the class who considered himself enlightened. He offered a veiled criticism of Hopkins’s religious themes in his poetry one day by saying, “I love what he does with the language of his poetry. It’s sad that the focus of his writing was so narrow.” To which Wyman responded, “God, man, the universe, that’s pretty narrow.”
It wasn’t just by introducing me to literature that my life was changed. My life was changed by her very presence. She was there for me when a lot of other folks weren’t, or probably more accurately, she found a way in when I wouldn’t let a lot of other folks be there for me. She touched my life more deeply than I have words to express. She was one of those types of friends that we could go long periods without seeing each other, but when we would see each other, it was like we had never been apart. After one of our lunches together, I went home and wrote a poem that I dedicated to her. I hope you will indulge me if I read it to you. It’s called “Being: For LW.”
In the little restaurant
At the intersection of Smith and Grace
The clock on the far wall was broken.
We appreciated each other's company
By choosing to fall
Into a comfortable silence;
To stare out the window
Which allowed the breeze
To threaten our napkins;
To admire how wise the sky
For being blue,
The trees for being green,
The poets for using rhyme
(Or not).
When we did speak, we spoke nothing.
We worked our lunch about our plates,
But that was the extent of it.
The smell of fried chicken still takes me there,
Like incense reminding a monk of prayer.
I wrote that poem after that lunch that day and brought it to her. She said to me, "Wow, that turned into poetry fast." I said, "Wyman, it was poetry all along." She nodded her head and said, "Wasn't it though?"
The restaurant at which we ate that day really was on the corner of Smith Street and Grace Street. That’s one of those” coincidences” that seemed to follow Wyman everywhere she went.
I was asked if I would close with a prayer today. I will, but first I would like to read in a spirit of prayer the 5th segment of Little Gidding, which is Number 4 of T.S. Eliot’s 4 quartets:
“What we call the beginning is often the end
And to make and end is to make a beginning.
The end is where we start from. And every phrase
And sentence that is right (where every word is at home,
Taking its place to support the others,
The word neither diffident nor ostentatious,
An easy commerce of the old and the new,
The common word exact without vulgarity,
The formal word precise but not pedantic,
The complete consort dancing together)
Every phrase and every sentence is an end and a beginning,
Every poem an epitaph. And any action
Is a step to the block, to the fire, down the sea's throat
Or to an illegible stone: and that is where we start.
We die with the dying:
See, they depart, and we go with them.
We are born with the dead:
See, they return, and bring us with them.
The moment of the rose and the moment of the yew-tree
Are of equal duration. A people without history
Is not redeemed from time, for history is a pattern
Of timeless moments. So, while the light fails
On a winter's afternoon, in a secluded chapel
History is now and England.
With the drawing of this Love and the voice of this Calling
We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.
Through the unknown, unremembered gate
When the last of earth left to discover
Is that which was the beginning;
At the source of the longest river
The voice of the hidden waterfall
And the children in the apple-tree
Not known, because not looked for
But heard, half-heard, in the stillness
Between two waves of the sea.
Quick now, here, now, always—
A condition of complete simplicity
(Costing not less than everything)
And all shall be well and
All manner of thing shall be well
When the tongues of flame are in-folded
Into the crowned knot of fire
And the fire and the rose are one.”
Let us Pray: Eternal rest grant unto her, Oh Lord. And let perpetual shine upon her. May she rest in peace. Amen.
Besides this, the only other prayer I can offer is one of thanksgiving that I was blessed to know her: Thank you, Lord, for the opportunity to get to know this humble, beautiful woman. Thank you, God. Amen.
Saturday, August 27, 2011
Freedom Isn't Free
I've heard people say, "Freedom isn't free," in reference to the idea that we must make sacrifices in order to maintain our freedom. It's true. Freedom and responsibility are two sides of the same coin. In order to be free, we must be responsible. We must be willing to make sacrifices to meet our responsibilities in order to maintain our freedom. We cannot have freedom without responsibility.
The nurse who will be working with us from the Hemophilia Treatment Center came over the other night and brought a social worker with her. The purpose of the visit was for the social worker to discuss with us the various possibilities for financial assistance in paying for Nathaniel's treatment.
Nathaniel has severe type hemophilia, which means he will be receiving the blood clotting factor infusions 3 times weekly starting at about 9 months of age and lasting the rest of his life. As a baby and through early childhood, the factor infusions will cost about $600 per week. Lesley's insurance will cover the majority of that cost. At this time, and the numbers may be revised in the future, Lesley's insurance will cover nearly all but the copays. I believe at this time, our out of pocket expenses for Nathaniel's infusions will be a little over $100 per week, once he starts receiving the infusions. This cost includes the amount of copays for the prescription and office visits. As he grows into adolescence and adulthood, his treatment costs will increase, because he will need more of the blood clotting factor per infusion (prescription cost goes up). As he reaches adulthood, the cost of his infusions could reach $6,000.00 per week. Again, insurance will cover the majority of that cost, leaving us with copays, which will increase due to the increased prescription cost.
We thought the social worker was going to come with grant or scholarship information.
Nope. Not so much.
He explained to us that Nathaniel's level of severity of hemophilia could qualify him for Social Security Disability, which in turn would qualify him for Medicaid/Medicare. Then he encouraged us to quit our jobs. Well, not really. Not both of us. He told us that if one of us quit work, our income would drop below the limits for social security. We could draw Social Security Income (SSI) on Nathaniel, around $500.00 monthly. Due to our low income level, Jacob and Caitlin would qualify for Medicaid, as well. We would also qualify for EBT card (colloquially known as "food stamps") and also qualify for other government assistance programs.
So basically, his solution to the financial responsibility that Nathaniel's hemophilia imposes on us is to become dependent on the government for income, health insurance, and food.
Lesley and I discussed this...briefly...very briefly.
Allow me to repeat: We can't have freedom without responsibility. They are two sides of the same coin. When we lose one, we necessarily give up the other.
Lesley and I didn't see the option this social worker presented to us as a means of managing the financial responsibility Nathaniel's treatment imposes. We saw his solution as an abdication of that responsibility. If one of us were to quit work so as to qualify for social security income, Medicaid, and EBT, we would lose the freedom of making decisions about Nathaniel's health care (and in turn Jacob's and Caitlin's). We would also lose the freedom to choose the type of housing in which we live, as we would no longer be able to afford our home. We would also lose the freedom of choosing what types of food we would like to eat. EBT only covers certain types of foods, and with reduced income we would not be able to afford our choices. By giving over responsibility to the government, we lose freedom.
I want to be understood here. In no way is this a criticism of those who truly need government assistance. I've worked in the social services field for several years now, and have helped people obtain Social Security Income (SSI), Social Security Disability Income (SSDI), housing assistance, food stamps, and Medicaid/Medicare. I did it willingly and diligently. After my brother's motorcycle accident, I knew he would not be able to work for an extended period of time, and I helped him get SSDI. I was glad when it was awarded, because I knew he truly needed it.
One thing needs to be understood about these programs, though. Those who utilize these government assistance programs lose a certain level of their freedom. For example, I've seen Medicaid turn down my clients for Hepatitis C treatments because they were over a certain age. By relying on government to pay for their healthcare, they lost the freedom to choose which treatments they received. With housing assistance, I worked with a gentleman who was not able to move into a fairly nice house simply because the house had 3 bedrooms rather than 2. The gentleman moved into a 2 bedroom apartment for the same cost as the 3 bedroom house, and housing authority ended up paying the same amount. The man lost his freedom to choose where he wanted to live because he needed the government to help him with the responsibility of paying for his rent. I worked with people who were put on restrictive diets by their doctors for chronic health conditions like diabetes and high blood pressure. They could not, however, afford the food the diets dictated, because they relied on EBT cards and food pantries for their groceries. The costs of the healthy foods the diets dictated far outstretched the meager amount they were awarded on their EBT card, and the food pantries, which do wonderful service, give out mostly processed foods high in sugar, salt, and other preservatives. They lost the freedom to obtain the types of food that would be good for them because they needed assistance with the responsibility of paying for their groceries.
These clients that I worked with legitimately needed help with meeting their needs for healthcare, shelter and food. The government took the responsibility of helping to provide for these needs, but also took from them the freedom to make choices concerning their healthcare, shelter and food.
Freedom and responsibility: if we give up one, we necessarily give up the other.
What the social worker who visited us proposed was not to help us obtain assistance that we needed. What he proposed was that we put ourselves deliberately into a situation where we need assistance. Then we were to hand the responsibility of meeting our needs over to the government. Lesley and I are not willing to sacrifice that freedom, even if it means taking on more responsibility.
The fact is, Lesley and I are blessed. I have no qualms about admitting that we have done well financially with our work. We are by no stretch of the imagination rich. But we're comfortable. We will need to make some lifestyle changes due to the cost of Nathaniel's treatment. I won't be buying that Harley Davidson by the time I turn 40. I will stop going out to lunch as often as I've been in the habit of doing. Lesley just might need to start buying a few more generic items at the grocery store. With her insurance (which is very good), with our incomes, and with a few minor lifestyle changes, the cost of Nathaniel's treatment will be manageable. We have the FREEDOM TO CHOOSE what sacrifices to make to meet our responsibilities. We won't have a third party (like the government) making the choices for us. We will not need to lose the freedoms we have because we aren't able to afford the responsibility.
Should our situation change in the future, we may need government assistance. Right now, we don't. To put ourselves deliberately into a situation where we would need government assistance would be a violation of my conscience, an abdication of freedom, and immoral.
We are going to apply for disability for Nathaniel, but not because we have to. We are going to apply, knowing that we will not qualify for disability income for him. But that's ok. We don't need it. We will apply in the hopes that he will be granted Medicaid, but, again, not because we need it. Medicaid, in this circumstance, will act as a secondary insurance to our primary insurance policy. It will also give us peace of mind. If anything happens to one of us, and we need Medicaid to become his primary insurance, he will already have been approved. There will not be a lapse in his ongoing treatment.
Lesley and I enjoy the freedoms we have. We know they come with a responsibility, but "Freedom isn't free."
The nurse who will be working with us from the Hemophilia Treatment Center came over the other night and brought a social worker with her. The purpose of the visit was for the social worker to discuss with us the various possibilities for financial assistance in paying for Nathaniel's treatment.
Nathaniel has severe type hemophilia, which means he will be receiving the blood clotting factor infusions 3 times weekly starting at about 9 months of age and lasting the rest of his life. As a baby and through early childhood, the factor infusions will cost about $600 per week. Lesley's insurance will cover the majority of that cost. At this time, and the numbers may be revised in the future, Lesley's insurance will cover nearly all but the copays. I believe at this time, our out of pocket expenses for Nathaniel's infusions will be a little over $100 per week, once he starts receiving the infusions. This cost includes the amount of copays for the prescription and office visits. As he grows into adolescence and adulthood, his treatment costs will increase, because he will need more of the blood clotting factor per infusion (prescription cost goes up). As he reaches adulthood, the cost of his infusions could reach $6,000.00 per week. Again, insurance will cover the majority of that cost, leaving us with copays, which will increase due to the increased prescription cost.
We thought the social worker was going to come with grant or scholarship information.
Nope. Not so much.
He explained to us that Nathaniel's level of severity of hemophilia could qualify him for Social Security Disability, which in turn would qualify him for Medicaid/Medicare. Then he encouraged us to quit our jobs. Well, not really. Not both of us. He told us that if one of us quit work, our income would drop below the limits for social security. We could draw Social Security Income (SSI) on Nathaniel, around $500.00 monthly. Due to our low income level, Jacob and Caitlin would qualify for Medicaid, as well. We would also qualify for EBT card (colloquially known as "food stamps") and also qualify for other government assistance programs.
So basically, his solution to the financial responsibility that Nathaniel's hemophilia imposes on us is to become dependent on the government for income, health insurance, and food.
Lesley and I discussed this...briefly...very briefly.
Allow me to repeat: We can't have freedom without responsibility. They are two sides of the same coin. When we lose one, we necessarily give up the other.
Lesley and I didn't see the option this social worker presented to us as a means of managing the financial responsibility Nathaniel's treatment imposes. We saw his solution as an abdication of that responsibility. If one of us were to quit work so as to qualify for social security income, Medicaid, and EBT, we would lose the freedom of making decisions about Nathaniel's health care (and in turn Jacob's and Caitlin's). We would also lose the freedom to choose the type of housing in which we live, as we would no longer be able to afford our home. We would also lose the freedom of choosing what types of food we would like to eat. EBT only covers certain types of foods, and with reduced income we would not be able to afford our choices. By giving over responsibility to the government, we lose freedom.
I want to be understood here. In no way is this a criticism of those who truly need government assistance. I've worked in the social services field for several years now, and have helped people obtain Social Security Income (SSI), Social Security Disability Income (SSDI), housing assistance, food stamps, and Medicaid/Medicare. I did it willingly and diligently. After my brother's motorcycle accident, I knew he would not be able to work for an extended period of time, and I helped him get SSDI. I was glad when it was awarded, because I knew he truly needed it.
One thing needs to be understood about these programs, though. Those who utilize these government assistance programs lose a certain level of their freedom. For example, I've seen Medicaid turn down my clients for Hepatitis C treatments because they were over a certain age. By relying on government to pay for their healthcare, they lost the freedom to choose which treatments they received. With housing assistance, I worked with a gentleman who was not able to move into a fairly nice house simply because the house had 3 bedrooms rather than 2. The gentleman moved into a 2 bedroom apartment for the same cost as the 3 bedroom house, and housing authority ended up paying the same amount. The man lost his freedom to choose where he wanted to live because he needed the government to help him with the responsibility of paying for his rent. I worked with people who were put on restrictive diets by their doctors for chronic health conditions like diabetes and high blood pressure. They could not, however, afford the food the diets dictated, because they relied on EBT cards and food pantries for their groceries. The costs of the healthy foods the diets dictated far outstretched the meager amount they were awarded on their EBT card, and the food pantries, which do wonderful service, give out mostly processed foods high in sugar, salt, and other preservatives. They lost the freedom to obtain the types of food that would be good for them because they needed assistance with the responsibility of paying for their groceries.
These clients that I worked with legitimately needed help with meeting their needs for healthcare, shelter and food. The government took the responsibility of helping to provide for these needs, but also took from them the freedom to make choices concerning their healthcare, shelter and food.
Freedom and responsibility: if we give up one, we necessarily give up the other.
What the social worker who visited us proposed was not to help us obtain assistance that we needed. What he proposed was that we put ourselves deliberately into a situation where we need assistance. Then we were to hand the responsibility of meeting our needs over to the government. Lesley and I are not willing to sacrifice that freedom, even if it means taking on more responsibility.
The fact is, Lesley and I are blessed. I have no qualms about admitting that we have done well financially with our work. We are by no stretch of the imagination rich. But we're comfortable. We will need to make some lifestyle changes due to the cost of Nathaniel's treatment. I won't be buying that Harley Davidson by the time I turn 40. I will stop going out to lunch as often as I've been in the habit of doing. Lesley just might need to start buying a few more generic items at the grocery store. With her insurance (which is very good), with our incomes, and with a few minor lifestyle changes, the cost of Nathaniel's treatment will be manageable. We have the FREEDOM TO CHOOSE what sacrifices to make to meet our responsibilities. We won't have a third party (like the government) making the choices for us. We will not need to lose the freedoms we have because we aren't able to afford the responsibility.
Should our situation change in the future, we may need government assistance. Right now, we don't. To put ourselves deliberately into a situation where we would need government assistance would be a violation of my conscience, an abdication of freedom, and immoral.
We are going to apply for disability for Nathaniel, but not because we have to. We are going to apply, knowing that we will not qualify for disability income for him. But that's ok. We don't need it. We will apply in the hopes that he will be granted Medicaid, but, again, not because we need it. Medicaid, in this circumstance, will act as a secondary insurance to our primary insurance policy. It will also give us peace of mind. If anything happens to one of us, and we need Medicaid to become his primary insurance, he will already have been approved. There will not be a lapse in his ongoing treatment.
Lesley and I enjoy the freedoms we have. We know they come with a responsibility, but "Freedom isn't free."
Thursday, August 25, 2011
NBFFNB
The first Motorcycle Clubs were founded in the late 1940’s by veterans returning from World War II. They were men who had been in combat. They had seen things and done things and experienced things that only other veterans understood. Those listening in from the outside could hear the stories, picture the images, and maybe catch some vague glimpse of emotion from these men. Those listening from the outside, however, could not in the fullest sense share the experience these men had. Only other veterans could do that.
These Motorcycle Clubs were founded by veterans who had tasted the thrill and horror of combat. They had something of a wild side, which was bred into them through their military training and experiences in war. It was hard for them to return to the mundane after what they had gone through. They needed something to fill that void of adrenaline rush that they had tasted in combat. So they rode motorcycles, raced them, got together for parties and weekend runs. They just wanted to be with other men who had shared this common experience of war and wanted to have some fun.
The idea of the “outlaw” motorcycle club was not a tag that was put on these groups by the police. It was put on them by the American Motorcycle Association (AMA). These veteran bikers would participate in and hold races that were not sanctioned by the AMA. Admittedly, they tended to be a little more rowdy in their activities than the AMA preferred, but, hey, they had just fought in war and seen their friends die to preserve our freedom. Who could blame them for wanting to blow off some steam? Their parties consisted of riding motorcycles, racing motorcycles, and alcohol consumption. It was bound to get a little rowdy.
The AMA, who didn’t like the fact that these clubs would organize races outside of their “authority,” quipped that most motorcyclists were good, honest, law-abiding citizens, but it was the one percent of motorcyclists who weren’t that gave the rest a bad name. Thus the “1%ers” were born. The “Outlaws.” Hollywood, beginning with Marlon Brando and “The Wild One,” ran with it. The image of the American Biker as an outlaw, someone outside of main stream, run of the mill, white-picket-fence-and-car-in-the-garage-America was born. And these veteran bikers loved it.
Society saw a ragtag band of bearded, unbathed, and uncouth men with bad manners and worse behavior. For the bikers, "the outlaw" meant freedom, the very thing they had fought and their brothers had died for. They became Robin Hood's fighting the oppressor; the Pirates sailing beyond the horizons; the Crusaders who would fight for freedom and wouldn't be bound by society's narrow limits and laws.
The original clubs were for men who had common experience surviving the horrors of war and earning the freedom just to have a good time. They got together with each other in that bond of brotherhood and had some fun. Nothing more.
That’s what New Breed Motorcycle Club means to me. I’m a prospect with New Breed Motorcycle Club, and I’m proud to be one. These men have invited me to get to know me, and let me get to know them, with the possibility that I can join them wearing the full patch someday. New Breed Motorcycle Club is a Clean and Sober Club, meaning that the members are in recovery from alcohol and drug addiction. That’s why they came together in the first place. Recovery first.
One can understand recovery by thinking of it as a program of self-improvement, but don’t let that analogy diminish what recovery means. For those in recovery, self-improvement is not a hobby, or a book written in pop-psychology that people read, get a couple of good ideas on how to reorganize their cabinets since the last book they read, and then put on a shelf. For those in recovery from addiction, this self-improvement means life or death. If they stop their program of recovery, they will eventually die. In addiction, there is no sitting still and being satisfied. There is only the daily work of moving forward and getting better…or relapse to death. These men are together because they need each other to save each other’s lives. They support one another’s recovery.
This common experience of having survived the loss of nearly everything (including their lives) (and sometimes multiple times), has drawn them together into a brotherhood. Their recovery means putting each other first. The reason they are club is because it gives them some ability to guard who comes into their brotherhood. They will only allow in and tolerate those who will participate in their recovery with them.
The men of New Breed MC have survived their addictions, bonded together to make sure they are all working their recoveries, and they want to have fun. They want to ride motorcycles, go to rallies, participate in activities, and do it clean and sober. They help each other do that. They help each other have clean and sober fun.
And I’m honored that they’ve invited me to be a part of it.
We are the “New Breed” of bikers, but really, our story isn’t that different than the story of those who have gone before us.
NBFFNB
These Motorcycle Clubs were founded by veterans who had tasted the thrill and horror of combat. They had something of a wild side, which was bred into them through their military training and experiences in war. It was hard for them to return to the mundane after what they had gone through. They needed something to fill that void of adrenaline rush that they had tasted in combat. So they rode motorcycles, raced them, got together for parties and weekend runs. They just wanted to be with other men who had shared this common experience of war and wanted to have some fun.
The idea of the “outlaw” motorcycle club was not a tag that was put on these groups by the police. It was put on them by the American Motorcycle Association (AMA). These veteran bikers would participate in and hold races that were not sanctioned by the AMA. Admittedly, they tended to be a little more rowdy in their activities than the AMA preferred, but, hey, they had just fought in war and seen their friends die to preserve our freedom. Who could blame them for wanting to blow off some steam? Their parties consisted of riding motorcycles, racing motorcycles, and alcohol consumption. It was bound to get a little rowdy.
The AMA, who didn’t like the fact that these clubs would organize races outside of their “authority,” quipped that most motorcyclists were good, honest, law-abiding citizens, but it was the one percent of motorcyclists who weren’t that gave the rest a bad name. Thus the “1%ers” were born. The “Outlaws.” Hollywood, beginning with Marlon Brando and “The Wild One,” ran with it. The image of the American Biker as an outlaw, someone outside of main stream, run of the mill, white-picket-fence-and-car-in-the-garage-America was born. And these veteran bikers loved it.
Society saw a ragtag band of bearded, unbathed, and uncouth men with bad manners and worse behavior. For the bikers, "the outlaw" meant freedom, the very thing they had fought and their brothers had died for. They became Robin Hood's fighting the oppressor; the Pirates sailing beyond the horizons; the Crusaders who would fight for freedom and wouldn't be bound by society's narrow limits and laws.
The original clubs were for men who had common experience surviving the horrors of war and earning the freedom just to have a good time. They got together with each other in that bond of brotherhood and had some fun. Nothing more.
That’s what New Breed Motorcycle Club means to me. I’m a prospect with New Breed Motorcycle Club, and I’m proud to be one. These men have invited me to get to know me, and let me get to know them, with the possibility that I can join them wearing the full patch someday. New Breed Motorcycle Club is a Clean and Sober Club, meaning that the members are in recovery from alcohol and drug addiction. That’s why they came together in the first place. Recovery first.
One can understand recovery by thinking of it as a program of self-improvement, but don’t let that analogy diminish what recovery means. For those in recovery, self-improvement is not a hobby, or a book written in pop-psychology that people read, get a couple of good ideas on how to reorganize their cabinets since the last book they read, and then put on a shelf. For those in recovery from addiction, this self-improvement means life or death. If they stop their program of recovery, they will eventually die. In addiction, there is no sitting still and being satisfied. There is only the daily work of moving forward and getting better…or relapse to death. These men are together because they need each other to save each other’s lives. They support one another’s recovery.
This common experience of having survived the loss of nearly everything (including their lives) (and sometimes multiple times), has drawn them together into a brotherhood. Their recovery means putting each other first. The reason they are club is because it gives them some ability to guard who comes into their brotherhood. They will only allow in and tolerate those who will participate in their recovery with them.
The men of New Breed MC have survived their addictions, bonded together to make sure they are all working their recoveries, and they want to have fun. They want to ride motorcycles, go to rallies, participate in activities, and do it clean and sober. They help each other do that. They help each other have clean and sober fun.
And I’m honored that they’ve invited me to be a part of it.
We are the “New Breed” of bikers, but really, our story isn’t that different than the story of those who have gone before us.
NBFFNB
Monday, August 22, 2011
I Forgot How Fun It Can Be
Parenting, that is.
Everyone who keeps up on facebook and the blog here knows the ongoing saga with trying to get sensor probes for the pulsox monitor that both fit Nathaniel and stay put once we get them on. I keep telling the company that it's the sensor probes, not the monitor, that is the problem. They keep telling us that they can bring us a new monitor.
Well, this weekend, on Saturday, we finally ran out of sensor probes. We turned his oxygen level to 1 notch higher than the bare minimum we had been keeping it. We turned the monitor completely off. That was Saturday afternoon. When Sunday morning finally came, we woke up to find an alert, smiling, goofy little boy waving his arms and "ah-goo"ing. He was so happy. I'm not a medical person, but I believe the 10 hours of having the oxygen set and maintained at a steady level without concern of desaturation of blood oxygen content and being messed with and stressed out by having uncomfortable sensor probes sticking to him made a WORLD of difference.
And not just for him.
We all had a really good time with him on Sunday. We had some balloons from a welcome home present that Lesley's cousin gave us. We put the strings in his hands and he bounced those balloons around and laughed. We tried putting a balloon in each hand. Not good. A little over stimulation. But the look of absolute terror on his face when both of those balloons were bouncing overhead was HILARIOUS. We picked him up without worrying about knocking probes loose. He and I danced to the Hemophilia Rock song we made up for him. (We don't have it written down yet, so don't ask for the words or music.)
Jacob and Caitlin weren't getting shooshed away everytime they wanted to stroke his head and give him a hug. At one point, Nathaniel was laying on the couch, and Jacob had climbed up the back of the couch and was precariously perched back there. I told Jacob to be careful not to fall on Nathaniel. "Because he's so sick, Daddy?" Jacob asked.
"No," I replied, "because he's a baby." It was nice telling Jacob that his little brother was a baby, and not a sick baby. Made me feel kind of normal, you know?
Over the last 7 weeks, I've been so worried about Nathaniel, first whether or not he was going to live to see the next day, about whether we were just prolonging his inevitable death, about whether he is ever going to get off this oxygen, about whether the pulsox readings are right or not, that I forgot what I love most about being a dad.
It's just fun.
I went to Mass yesterday morning, and I cried in Church. I was at my wit's end with the whole thing. I prayed from that deep place, you know, "Deep is calling on deep in the roar of waters." (Psalm 42:8) I prayed for Nathaniel's healing. That prayer was answered. He still has hemophilia. He's still on oxygen. The healing I got was what existed between me and Nathaniel.
Yesterday I was able to stop looking at him as this sick little baby, and I looked at him as my son. I had fun with him. We laughed together. We danced together. We played with his balloons together. We teased mommy together. We even ate an ice cream cone together (well, I did most of the eating, ok, all of the eating, but he was there with me).
It was fun being his daddy yesterday. I had forgotten just how fun it can be.
Being a parent is "wonderful," "beautiful," "miraculous," and all of those other fluffy adjectives. It's also just fun.
I remember that now, and I suspect THAT healing is what will help Nathaniel more than anything else.
Everyone who keeps up on facebook and the blog here knows the ongoing saga with trying to get sensor probes for the pulsox monitor that both fit Nathaniel and stay put once we get them on. I keep telling the company that it's the sensor probes, not the monitor, that is the problem. They keep telling us that they can bring us a new monitor.
Well, this weekend, on Saturday, we finally ran out of sensor probes. We turned his oxygen level to 1 notch higher than the bare minimum we had been keeping it. We turned the monitor completely off. That was Saturday afternoon. When Sunday morning finally came, we woke up to find an alert, smiling, goofy little boy waving his arms and "ah-goo"ing. He was so happy. I'm not a medical person, but I believe the 10 hours of having the oxygen set and maintained at a steady level without concern of desaturation of blood oxygen content and being messed with and stressed out by having uncomfortable sensor probes sticking to him made a WORLD of difference.
And not just for him.
We all had a really good time with him on Sunday. We had some balloons from a welcome home present that Lesley's cousin gave us. We put the strings in his hands and he bounced those balloons around and laughed. We tried putting a balloon in each hand. Not good. A little over stimulation. But the look of absolute terror on his face when both of those balloons were bouncing overhead was HILARIOUS. We picked him up without worrying about knocking probes loose. He and I danced to the Hemophilia Rock song we made up for him. (We don't have it written down yet, so don't ask for the words or music.)
Jacob and Caitlin weren't getting shooshed away everytime they wanted to stroke his head and give him a hug. At one point, Nathaniel was laying on the couch, and Jacob had climbed up the back of the couch and was precariously perched back there. I told Jacob to be careful not to fall on Nathaniel. "Because he's so sick, Daddy?" Jacob asked.
"No," I replied, "because he's a baby." It was nice telling Jacob that his little brother was a baby, and not a sick baby. Made me feel kind of normal, you know?
Over the last 7 weeks, I've been so worried about Nathaniel, first whether or not he was going to live to see the next day, about whether we were just prolonging his inevitable death, about whether he is ever going to get off this oxygen, about whether the pulsox readings are right or not, that I forgot what I love most about being a dad.
It's just fun.
I went to Mass yesterday morning, and I cried in Church. I was at my wit's end with the whole thing. I prayed from that deep place, you know, "Deep is calling on deep in the roar of waters." (Psalm 42:8) I prayed for Nathaniel's healing. That prayer was answered. He still has hemophilia. He's still on oxygen. The healing I got was what existed between me and Nathaniel.
Yesterday I was able to stop looking at him as this sick little baby, and I looked at him as my son. I had fun with him. We laughed together. We danced together. We played with his balloons together. We teased mommy together. We even ate an ice cream cone together (well, I did most of the eating, ok, all of the eating, but he was there with me).
It was fun being his daddy yesterday. I had forgotten just how fun it can be.
Being a parent is "wonderful," "beautiful," "miraculous," and all of those other fluffy adjectives. It's also just fun.
I remember that now, and I suspect THAT healing is what will help Nathaniel more than anything else.
Tuesday, August 16, 2011
Missing the Trees for the Forest
We've all heard that old saying, "He missed the forest for the trees." It's supposed to challenge us to keep big picture in mind, rather than getting so focused on the little things that we miss the grand scheme.
It's become painfully clear to me that if I am a "grand scheme person" in my spiritual life, I am spiritually blind. I can't see the trees for the forest. More importantly, if I'm busy looking at the forest, I can't see the path through the trees.
The wisdom literature in the scriptures present different concepts of wisdom. One of those scriptural concepts of wisdom that I have found meaningful and practical in my day-to-day life is that the wise person knows what is the right thing to do and the right time to do it. "For everything, there is a season, and a time for every matter under heaven. He has made everything beautiful in its time; also he has put eternity into man's mind, yet so that he cannot find out what God has done from the beginning to the end." (Ecclesiastes 3: 1, 11)
It's always foolish to do the wrong thing. It is possible, also, to do the right thing at the wrong time. This is equally foolish. The wise person is able to understand that there is:
"a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
a time to rend, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace." (Ecclesiastes 3:2-8)
The wise person is able to find the right thing to do at the right time.
This frees me in a way that I have never experienced freedom. I don't have to worry about the big picture. My vision needs to be on the here and now. After all, that's all God sees.
God is the eternal now. Let that sink in for a moment. God has no future and no past. "He is who is." That's why God is the same yesterday, today, and forever. The difference between God's vision and mine is that for God every moment in history is happening right now. For me, only this moment is happening right now, but that's ok, because all I need to be concerned about is right now.
This may seem sheets to the wind, and a poor plan for future security, but there are certain things that I would like us to consider, like the lilies of the field.
"Therefore I tell you, do not be anxious about your life, what you shall eat or what you shall drink, nor about your body, what you shall put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add one cubit to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow; they neither toil nor spin; yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O men of little faith? Therefore do not be anxious, saying, `What shall we eat?' or `What shall we drink?' or `What shall we wear?' For the Gentiles seek all these things; and your heavenly Father knows that you need them all. But seek first his kingdom and his righteousness, and all these things shall be yours as well. Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day's own trouble be sufficient for the day." (Matthew 6:25-34)
This sets me free, because I know that all I need to do is what is right for today. I need to seek the kingdom now. By laying the brick in my hand, I make way for the next one to be laid. If all my attention is focused on the next one, however, I'll screw up the one I'm working on now.
I don't have to worry about what is the right thing to do tomorrow. I don't have to worry about what is the right thing to do next year. I don't have to worry about who's going to get elected in 2012. I don't have to worry about if the stock market crashes, and what will happen to my retirement account.
If I am in touch with the Holy Spirit who guides me in my moment to moment decisions, then in 10 years, I will find that I am exactly where I am supposed to be, doing exactly what I am supposed to be doing, with exactly what I need to do it. God, who sees 10 years from now as now, is preparing now for what I cannot see. "...he has put eternity into man's mind, yet so that he cannot find out what God has done from the beginning to the end." (Ecclesiastes 3: 11b)
Here's a great mistake I made in my life. When I was discerning whether or not to become a priest, I had a still, small voice inside of me telling me that I should not get ordained. I spent so much time thinking about the future, and what ministry would be like, and where I would be 10 years, 20 years, 30 years from where I was, that I didn't listen to what that still, small voice was saying to me AT THAT MOMENT. If I had known then what I know now, I would not have asked for ordination. It was not God's will for me. I got so blinded by the forest, that I missed the details of the trees, which have a beauty all their own.
Right now, I am not called to see the forest. That's a vision that I will have someday in heaven. Right now, I'm called to keep my vision squarely on the path that I am walking today.
Practically, this is how it works. What do I do with my money today? I pray about it. That's always first. I ask God what is his will for me to do with my money today. God will guide me to divide it up between tithing, bills, insurance payments, retirement accounts, fun money. He will guide me into the amount given to each. Strangely enough, when I instituted this practice into my financial management, I've always had enough for everything.
I have a dear friend who takes issue with the list of priorities, "God first, something second, something else third." You can fill in the blanks. His issue is, "Why should I go beyond saying, 'God first'?" If God is first, and I am seeking what is his will for me now, God will tell me WHAT should be second and WHEN "fill in the blank" should be second. Because sometimes, "fill in the blank" will be third. "But seek first his kingdom and his righteousness, and all these things shall be yours as well." (Matthew 6: 33)
I have to monitor myself constantly, because I want to know what the future will be for me and for my children. That's not mine to know. When I'm suffering, I want to know what great purpose this suffering may serve. That's not mine to know either. What is mine is to seek God's will for me now, and to believe "He has made everything beautiful in it's time."
I know that if I'm doing God's will now, He will make it all beautiful IN ITS TIME.
It's become painfully clear to me that if I am a "grand scheme person" in my spiritual life, I am spiritually blind. I can't see the trees for the forest. More importantly, if I'm busy looking at the forest, I can't see the path through the trees.
The wisdom literature in the scriptures present different concepts of wisdom. One of those scriptural concepts of wisdom that I have found meaningful and practical in my day-to-day life is that the wise person knows what is the right thing to do and the right time to do it. "For everything, there is a season, and a time for every matter under heaven. He has made everything beautiful in its time; also he has put eternity into man's mind, yet so that he cannot find out what God has done from the beginning to the end." (Ecclesiastes 3: 1, 11)
It's always foolish to do the wrong thing. It is possible, also, to do the right thing at the wrong time. This is equally foolish. The wise person is able to understand that there is:
"a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
a time to rend, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace." (Ecclesiastes 3:2-8)
The wise person is able to find the right thing to do at the right time.
This frees me in a way that I have never experienced freedom. I don't have to worry about the big picture. My vision needs to be on the here and now. After all, that's all God sees.
God is the eternal now. Let that sink in for a moment. God has no future and no past. "He is who is." That's why God is the same yesterday, today, and forever. The difference between God's vision and mine is that for God every moment in history is happening right now. For me, only this moment is happening right now, but that's ok, because all I need to be concerned about is right now.
This may seem sheets to the wind, and a poor plan for future security, but there are certain things that I would like us to consider, like the lilies of the field.
"Therefore I tell you, do not be anxious about your life, what you shall eat or what you shall drink, nor about your body, what you shall put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add one cubit to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow; they neither toil nor spin; yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O men of little faith? Therefore do not be anxious, saying, `What shall we eat?' or `What shall we drink?' or `What shall we wear?' For the Gentiles seek all these things; and your heavenly Father knows that you need them all. But seek first his kingdom and his righteousness, and all these things shall be yours as well. Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day's own trouble be sufficient for the day." (Matthew 6:25-34)
This sets me free, because I know that all I need to do is what is right for today. I need to seek the kingdom now. By laying the brick in my hand, I make way for the next one to be laid. If all my attention is focused on the next one, however, I'll screw up the one I'm working on now.
I don't have to worry about what is the right thing to do tomorrow. I don't have to worry about what is the right thing to do next year. I don't have to worry about who's going to get elected in 2012. I don't have to worry about if the stock market crashes, and what will happen to my retirement account.
If I am in touch with the Holy Spirit who guides me in my moment to moment decisions, then in 10 years, I will find that I am exactly where I am supposed to be, doing exactly what I am supposed to be doing, with exactly what I need to do it. God, who sees 10 years from now as now, is preparing now for what I cannot see. "...he has put eternity into man's mind, yet so that he cannot find out what God has done from the beginning to the end." (Ecclesiastes 3: 11b)
Here's a great mistake I made in my life. When I was discerning whether or not to become a priest, I had a still, small voice inside of me telling me that I should not get ordained. I spent so much time thinking about the future, and what ministry would be like, and where I would be 10 years, 20 years, 30 years from where I was, that I didn't listen to what that still, small voice was saying to me AT THAT MOMENT. If I had known then what I know now, I would not have asked for ordination. It was not God's will for me. I got so blinded by the forest, that I missed the details of the trees, which have a beauty all their own.
Right now, I am not called to see the forest. That's a vision that I will have someday in heaven. Right now, I'm called to keep my vision squarely on the path that I am walking today.
Practically, this is how it works. What do I do with my money today? I pray about it. That's always first. I ask God what is his will for me to do with my money today. God will guide me to divide it up between tithing, bills, insurance payments, retirement accounts, fun money. He will guide me into the amount given to each. Strangely enough, when I instituted this practice into my financial management, I've always had enough for everything.
I have a dear friend who takes issue with the list of priorities, "God first, something second, something else third." You can fill in the blanks. His issue is, "Why should I go beyond saying, 'God first'?" If God is first, and I am seeking what is his will for me now, God will tell me WHAT should be second and WHEN "fill in the blank" should be second. Because sometimes, "fill in the blank" will be third. "But seek first his kingdom and his righteousness, and all these things shall be yours as well." (Matthew 6: 33)
I have to monitor myself constantly, because I want to know what the future will be for me and for my children. That's not mine to know. When I'm suffering, I want to know what great purpose this suffering may serve. That's not mine to know either. What is mine is to seek God's will for me now, and to believe "He has made everything beautiful in it's time."
I know that if I'm doing God's will now, He will make it all beautiful IN ITS TIME.
Wednesday, August 10, 2011
Rolling the Dice with My Son's Life
Those of you who have been following on facebook know that Nathaniel was discharged from the hospital last Friday, August 5. When he was discharged, he was on 50 milliliters (ml) of oxygen support, and doing very well on it. The oxygen support runs in 25 ml increments, so ideally, we should have been able to wean him down to 25 ml, and then remove the oxygen support in a short amount of time, a few days to a week.
We left the hospital around 3:45 pm on Friday, with a portable oxygen tank and a pulsox machine (which is used for reading his blood saturation level known as the "sat" and his pulse rate). Around 6:30 the big oxygen tank delivery dude shows up with the oxygen concentrator for use at home. We hook up the oxygen concentrator, get everything going, and finally connect the sensors to the pulsox to get a read on how his sats are. For Nathaniel, sat numbers above 90 are considered normal. We couldn't get him to sat over 85. We messed with it for about 45 minutes to an hour, and decided to call the on-call numbers.
First we were given the Friday evening on-call run around. If you've ever tried to reach somebody who's supposed to be on-call on a Friday evening, you know exactly what I'm talking about.
Finally, we got a hold of the doctor Dr. Sarah Smitherman (whom we have come to love) who was the chief resident on the pediatric floor at the Women's and Children's Hospital in Columbia that night. She told us that she suspected the problem was with the pulsox machine, and not with Nathaniel, so to come up to the hospital and bring the pulsox with us. We called Lesley's mom and dad to come watch Jacob and Caitlin and headed up to the hospital.
Dr. Smitherman hooked up the hospital pulsox to one foot, and our pulsox to his other foot. There was a 10 point difference in their readings. The hospital pulsox was reading around 94-96. Ours was not reading over 85. Dr. Smitherman got in touch with the home health company who gave us the pulsox. The guy from the home health service showed up and examined the machine. I expressed to him at that time that I honestly didn't believe it was the monitor, but rather the sensors that weren't reading him properly. He said he understood what I was saying, but that he didn't have the expertise to make that distinction. He gave us a new monitor, and several of the same sensors that we had to begin with, and sent us home.
All weekend, we watched Nathaniel's numbers bounce around. He would be 92, 94, then drop to 73, then climb back up to 89, then drop to 84, then climb back up to 92, then drop to...you get the picture. The whole time, all of the indicators that would signal that the machine was getting a bad read were pretty quiet. I kept thinking, "How could his readings be so inconsistent but the machine be picking him up properly?"
On Monday about noon, one of the respiratory therapists (RT) who works for the home health group came out to the house. They tried several different placements of the sensors on Nathaniel, but none of them were giving a consistent reading. The RT tried placing the sensor on herself and on Lesley. Inconsistent readings. She said, "Well, we could try ordering another machine, a completely different type, and see if that helps." Lesley told the RT that she would discuss it with me, and we would get back to her.
On Monday afternoon, we went to our family pediatrician, Dr. Weiss, for a scheduled hospital discharge follow up for Nathaniel. We explained to him that we couldn't get a good consistent reading from the pulsox. He believed us; that's why we love him. He offered to call the home health group himself, but we didn't have the number on us. We told him we would call as soon as we got home.
We left Dr. Weiss's office, picked up Jacob and Caitlin, went home, and Lesley called the home health group again. She expressed to them on the phone that we believed that the sensors were the problem. The guy came out, super nice, very kind, obviously concerned for us and our situation. He brought another of the same kind of monitors. I told him the same thing that Lesley and I had been saying for the past 4 days, "I don't think it's the monitor. The sensors are not picking him up." The guy, very nice, said, "I hear what you're saying, but I don't know how to get better sensors than the ones that came with the machine. I'm kind of just the delivery guy." He offered to leave us with a new monitor.
AAAAAHHHHHH!!!!
He left.
At this point, it was Monday evening, and Nathaniel was starting to look pretty tuckered out. He didn't want to eat. He was pretty lethargic. I tickled him in the ribs, shook him (gently to wake him) and tried getting him roused. He just did not want to wake up. The whole time, his pulsox sat was bouncing between 92 and 81. Remember, below 90 is bad. Lesley called again the on-call number. We spoke to a pulmonologist. The doctor asked lots of questions, and asked us to pinch his fingernail. If you pinch your fingernail, it will turn palish gray, and then turn pink again fairly quickly. If it does not, there's a problem. Nathaniel's didn't seem to turn pink again. She asked if his fingers and toes were cold. Yep. She told us that the lethargy, the fact he wasn't eating his normal amount, the "fingernail" test, and the coldness in his fingers and toes made her think there was a "blood profusion" problem. She asked what his pulsox number was. I responded, "Which one, the one now, or the one 5 seconds ago." I tried to explain to her that the pulsox was giving us inconsistent readings, and we honestly have never had a good sense of what his sat was since we brought him home.
The doctor at this point responded to me, "Well, we may be blaming the machine when actually he is getting sicker." I wanted to reach through the phone and smack her. She hadn't been living with the uncertainty about how our son was responding to his oxygen for 4 days. And she has the nerve to say that to me.
To me, her response bespeaks an incredible level of arrogance. There are some, not all, but some doctors who rely so heavily on their equipment, that they stop trusting the parents and caregivers to know their children.
She advised us to go to the hospital because she believed he was anemic. We packed up Jacob and Caitlin and took them to Mima and Papa's. We made the trip up to Columbia. When we arrived at the hospital, we were ushered to the Pediatric Intensive Care Unit, where they hooked him up to a pulsox monitor. His oxygen supply level was set at 125 ml.
It immediately read 96. We watched it for about 15 minutes. It never went below 92. They turned it down to 100. It dropped for a second to 91, and then started reading consistently 94-95. We dropped him to 75. The pulsox number dropped to 89 for a second, and then went back up and stayed consistently at 92-93. We dropped the oxygen to 50 ml. The pulsox dropped to 88, and then went to 92. We dropped the oxygen to 25 ml, and Nathaniel dropped to 88-89, and kind of camped there. So now we know. 50 ml of oxygen is the real amount that he needs in order to keep his sat level above 90. That means for the past 4 days, we have been giving him more than twice the amount of oxygen that he needs. For the past 4 days, we have been terrified to drop his level of oxygen support because the machine was not reading him correctly. For the past 4 days, we've been telling people that what we are doing right now is not working, not that Nathaniel is getting worse, but that we are afraid to do what we were told to do because we can't tell if he's getting worse.
I want to go back to that on-call doctor that we spoke to last night and rub her freakin' face in it. "Can we blame the machine now?" and probably throw in an expletive or two. Doctors who dismiss their patients experiences because they are trusting a machine get zero respect from me.
One of Lesley's relatives, I think it was her grandmother, was born very premature way back in the early 1900's, before incubators, breathing tubes, pulsox monitors. Her parents kept her alive by putting her in a shoe box on the door of the wood stove. Her parents knew instinctively what to do for that child.
I'd like to think Lesley and I know what to do for ours, but I have to admit I've bought into this self-doubt that the machines will tell us something that we don't know. I know these machines' value. The doctors, using these very same machines, saved my son's life. But I also know when the machine is not giving me information that is consistent with what I see in my son. At what point do I stop trusting the machine and just go with my gut as a parent? Man, that's a gamble. Do I really want to roll the dice when my son's life could be at stake? Do I want to take the gamble in trusting a doctor who puts her faith in a machine that I know isn't working?
Anyway, Dr. Gruner, our hematologist who will be helping us manage Nathaniel's hemophilia, is going to go to bat for us. She told us we will be leaving the hospital today, but not until we get a machine that is giving us accurate information. This is twice that we've had to rush to the hospital, not because Nathaniel's health was in danger, but because the machines that we have been told to rely on as a guide for his improvement aren't working.
The most important thing in the end is that Nathaniel is fine. Blood counts came back normal. No anemia. Chest xrays came back clear. No fluid build up on the lungs. Oxygen level was moved up to 75 ml when he got mad when he pooped, which is ok. It'll get turned back down to 50 ml in a little while when he calms down. Sat levels are staying in 91-95 range. That's his normal for now.
And above all, when I look at him, I can tell he's feeling frisky. I know in my gut that he's ok. That's where I'll place my bets for now.
We left the hospital around 3:45 pm on Friday, with a portable oxygen tank and a pulsox machine (which is used for reading his blood saturation level known as the "sat" and his pulse rate). Around 6:30 the big oxygen tank delivery dude shows up with the oxygen concentrator for use at home. We hook up the oxygen concentrator, get everything going, and finally connect the sensors to the pulsox to get a read on how his sats are. For Nathaniel, sat numbers above 90 are considered normal. We couldn't get him to sat over 85. We messed with it for about 45 minutes to an hour, and decided to call the on-call numbers.
First we were given the Friday evening on-call run around. If you've ever tried to reach somebody who's supposed to be on-call on a Friday evening, you know exactly what I'm talking about.
Finally, we got a hold of the doctor Dr. Sarah Smitherman (whom we have come to love) who was the chief resident on the pediatric floor at the Women's and Children's Hospital in Columbia that night. She told us that she suspected the problem was with the pulsox machine, and not with Nathaniel, so to come up to the hospital and bring the pulsox with us. We called Lesley's mom and dad to come watch Jacob and Caitlin and headed up to the hospital.
Dr. Smitherman hooked up the hospital pulsox to one foot, and our pulsox to his other foot. There was a 10 point difference in their readings. The hospital pulsox was reading around 94-96. Ours was not reading over 85. Dr. Smitherman got in touch with the home health company who gave us the pulsox. The guy from the home health service showed up and examined the machine. I expressed to him at that time that I honestly didn't believe it was the monitor, but rather the sensors that weren't reading him properly. He said he understood what I was saying, but that he didn't have the expertise to make that distinction. He gave us a new monitor, and several of the same sensors that we had to begin with, and sent us home.
All weekend, we watched Nathaniel's numbers bounce around. He would be 92, 94, then drop to 73, then climb back up to 89, then drop to 84, then climb back up to 92, then drop to...you get the picture. The whole time, all of the indicators that would signal that the machine was getting a bad read were pretty quiet. I kept thinking, "How could his readings be so inconsistent but the machine be picking him up properly?"
On Monday about noon, one of the respiratory therapists (RT) who works for the home health group came out to the house. They tried several different placements of the sensors on Nathaniel, but none of them were giving a consistent reading. The RT tried placing the sensor on herself and on Lesley. Inconsistent readings. She said, "Well, we could try ordering another machine, a completely different type, and see if that helps." Lesley told the RT that she would discuss it with me, and we would get back to her.
On Monday afternoon, we went to our family pediatrician, Dr. Weiss, for a scheduled hospital discharge follow up for Nathaniel. We explained to him that we couldn't get a good consistent reading from the pulsox. He believed us; that's why we love him. He offered to call the home health group himself, but we didn't have the number on us. We told him we would call as soon as we got home.
We left Dr. Weiss's office, picked up Jacob and Caitlin, went home, and Lesley called the home health group again. She expressed to them on the phone that we believed that the sensors were the problem. The guy came out, super nice, very kind, obviously concerned for us and our situation. He brought another of the same kind of monitors. I told him the same thing that Lesley and I had been saying for the past 4 days, "I don't think it's the monitor. The sensors are not picking him up." The guy, very nice, said, "I hear what you're saying, but I don't know how to get better sensors than the ones that came with the machine. I'm kind of just the delivery guy." He offered to leave us with a new monitor.
AAAAAHHHHHH!!!!
He left.
At this point, it was Monday evening, and Nathaniel was starting to look pretty tuckered out. He didn't want to eat. He was pretty lethargic. I tickled him in the ribs, shook him (gently to wake him) and tried getting him roused. He just did not want to wake up. The whole time, his pulsox sat was bouncing between 92 and 81. Remember, below 90 is bad. Lesley called again the on-call number. We spoke to a pulmonologist. The doctor asked lots of questions, and asked us to pinch his fingernail. If you pinch your fingernail, it will turn palish gray, and then turn pink again fairly quickly. If it does not, there's a problem. Nathaniel's didn't seem to turn pink again. She asked if his fingers and toes were cold. Yep. She told us that the lethargy, the fact he wasn't eating his normal amount, the "fingernail" test, and the coldness in his fingers and toes made her think there was a "blood profusion" problem. She asked what his pulsox number was. I responded, "Which one, the one now, or the one 5 seconds ago." I tried to explain to her that the pulsox was giving us inconsistent readings, and we honestly have never had a good sense of what his sat was since we brought him home.
The doctor at this point responded to me, "Well, we may be blaming the machine when actually he is getting sicker." I wanted to reach through the phone and smack her. She hadn't been living with the uncertainty about how our son was responding to his oxygen for 4 days. And she has the nerve to say that to me.
To me, her response bespeaks an incredible level of arrogance. There are some, not all, but some doctors who rely so heavily on their equipment, that they stop trusting the parents and caregivers to know their children.
She advised us to go to the hospital because she believed he was anemic. We packed up Jacob and Caitlin and took them to Mima and Papa's. We made the trip up to Columbia. When we arrived at the hospital, we were ushered to the Pediatric Intensive Care Unit, where they hooked him up to a pulsox monitor. His oxygen supply level was set at 125 ml.
It immediately read 96. We watched it for about 15 minutes. It never went below 92. They turned it down to 100. It dropped for a second to 91, and then started reading consistently 94-95. We dropped him to 75. The pulsox number dropped to 89 for a second, and then went back up and stayed consistently at 92-93. We dropped the oxygen to 50 ml. The pulsox dropped to 88, and then went to 92. We dropped the oxygen to 25 ml, and Nathaniel dropped to 88-89, and kind of camped there. So now we know. 50 ml of oxygen is the real amount that he needs in order to keep his sat level above 90. That means for the past 4 days, we have been giving him more than twice the amount of oxygen that he needs. For the past 4 days, we have been terrified to drop his level of oxygen support because the machine was not reading him correctly. For the past 4 days, we've been telling people that what we are doing right now is not working, not that Nathaniel is getting worse, but that we are afraid to do what we were told to do because we can't tell if he's getting worse.
I want to go back to that on-call doctor that we spoke to last night and rub her freakin' face in it. "Can we blame the machine now?" and probably throw in an expletive or two. Doctors who dismiss their patients experiences because they are trusting a machine get zero respect from me.
One of Lesley's relatives, I think it was her grandmother, was born very premature way back in the early 1900's, before incubators, breathing tubes, pulsox monitors. Her parents kept her alive by putting her in a shoe box on the door of the wood stove. Her parents knew instinctively what to do for that child.
I'd like to think Lesley and I know what to do for ours, but I have to admit I've bought into this self-doubt that the machines will tell us something that we don't know. I know these machines' value. The doctors, using these very same machines, saved my son's life. But I also know when the machine is not giving me information that is consistent with what I see in my son. At what point do I stop trusting the machine and just go with my gut as a parent? Man, that's a gamble. Do I really want to roll the dice when my son's life could be at stake? Do I want to take the gamble in trusting a doctor who puts her faith in a machine that I know isn't working?
Anyway, Dr. Gruner, our hematologist who will be helping us manage Nathaniel's hemophilia, is going to go to bat for us. She told us we will be leaving the hospital today, but not until we get a machine that is giving us accurate information. This is twice that we've had to rush to the hospital, not because Nathaniel's health was in danger, but because the machines that we have been told to rely on as a guide for his improvement aren't working.
The most important thing in the end is that Nathaniel is fine. Blood counts came back normal. No anemia. Chest xrays came back clear. No fluid build up on the lungs. Oxygen level was moved up to 75 ml when he got mad when he pooped, which is ok. It'll get turned back down to 50 ml in a little while when he calms down. Sat levels are staying in 91-95 range. That's his normal for now.
And above all, when I look at him, I can tell he's feeling frisky. I know in my gut that he's ok. That's where I'll place my bets for now.
Saturday, August 06, 2011
I Am In Recovery
My brother has been CLEAN AND SOBER for over 3 years. I thank God for that. We've grown to a place in our relationship where I don't feel like I have to protect myself from him, emotionally, physically, financially, you name it. I truly thank God that I have my brother back.
He was at the house yesterday and was talking with me and Lesley. I can't remember the question Lesley asked, but my brother's response struck me: "No, I was an addict a long time before I started using drugs."
I've been thinking about that a lot since he said that.
I realized that I was, too, despite the fact that I've never been addicted to drugs or alcohol.
God diddles in our lives. No doubt about that. He puts people and events in our lives that protect us, inspire us, move us, affirm us, and strengthen us along the way. I believe this: God knew that if I had started down the road of drugs and alcohol, there probably would not have been "recovery" for me. I've always been a "balls to the wall or nothing at all" kind of guy. If God had not intervened and protected me, I would not be alive today. I know I'm not strong enough to go through what I see recoverying alcoholics and addicts go through to stay alive.
Addiction is a terminal illness. If left untreated, it will kill the addict. That's the bottom line. A lot of addicts don't get serious about their recovery until they've come to that painful awareness. They have a terminal illness. They will die from it. But treatment leads to recovery, and recovery leads to life.
I believe that God knows my weakness. I believe that he put people, places and events in my life to keep me from going down that road. There were plenty of times when I had opportunity to use, but something interfered.
An example: I spent the entire spring semester of my junior year in college seminary drunk. That was the semester my great-grandfather died, and I felt incredibly betrayed by God. That was the semester where I really confronted my fears that if God existed at all, I thought he was an abusive, manipulative, asshole who enjoyed setting me up for failure to get his kicks. (I have of course come to understand Him very differently since then, but there's no doubt my image of God the Father was formed by my step-father.)
One morning towards the end of that semester, I was nursing a hang over and a cup of coffee, thinking about when I was going to go into town to buy another bottle of cheap scotch for that night. A guy who I knew was connected with AA came over to me.
"Can I talk to you for a second?" He asked.
I grunted.
"You know how to turn a cucumber into a pickle?" He persisted.
"No, I don't know how to turn a cucumber into a pickle." I was trying to let him know I also didn't really care at the moment.
"You soak it in vinegar," he said. "There's a long time where you can pull that cucumber out of that vinegar, and it will still be a cucumber. But once it turns into a pickle, it'll never be a cucumber again. And you don't know when that moment will be."
"Very enlightening," I said.
"You know how to make a guy an alcoholic?" He asked. I didn't really like where this was going. "You soak him in alcohol," he continued. "There's a long time where if a guy stops drinking, he won't be an alcoholic. But at the moment he flips that switch and becomes an alcoholic, there will never be a time for the rest of his life where he will not be an alcoholic again, and you don't know when that moment will be either." I didn't say anything to this. "I hope you think about that," he said as he got up from the table.
I didn't go buy that scotch that night. I didn't drink any alcohol again for probably 2 years. I can say that I've only actually been drunk 2 times since that conversation in 1995.
God put that guy in my life at that time to keep me from going down that road. I praise God that he also put the grace in me to listen to him. God also put dozens, maybe hundreds of people in my life that I may never even know about, who stepped in at various moments to keep me from going down a path from which I would never have RECOVERED.
What makes an alcoholic an alcoholic? It's not just soaking him in alcohol. There's a whole lot of other things that go into the thinking, attitudes and behaviors that alcoholics and addicts have. It's in their core, in their hearts and personalities. I believe I have those wounds, tendencies, weaknesses, "defects of character" in me. I believe God has protected me from drugs and alcohol, although my defects have come out in other ways in my life. I begin to recognize those defects of character more and more as I maneuver my meandering way through life.
So I believe (I hope that those who are in recovery from drugs and alcohol don't get offended by this) that while I have never been addicted to drugs or alcohol, I am in recovery. I am trying to work on those defects of character that have wounded so many people in my past, more people than I can possibly count, honestly. I know that I have left behind me a wake of wounded people. I am in recovery. Even the Alcoholics Anonymous big book (and my brother could tell you the page number) says that most people are sick, and only some express that sickness through addiction to alcohol and/or drugs.
I claim that recovery.
There's a myth out there that a lot of addicts join in as a way to keep them from having to work with "straight" counselors. The myth is that "If my counselor has not been an addict, he/she can't really understand what I'm going through, so there's nothing he/she can teach me." Unfortunately, that's a myth that many counselors have bought into, too.
With this myth in mind, many of my clients ask me if I'm in recovery. I've always wanted to say yes, but wasn't quite able to give that answer without feeling disingenuous. I claim my own recovery, now. Yes, I'm in recovery. Was I addicted to drugs and alcohol? No. Do I have defects of character that make me vulnerable to addiction and lead me to hurt people in my life? Absolutely, I do. And that's why I'm in recovery.
He was at the house yesterday and was talking with me and Lesley. I can't remember the question Lesley asked, but my brother's response struck me: "No, I was an addict a long time before I started using drugs."
I've been thinking about that a lot since he said that.
I realized that I was, too, despite the fact that I've never been addicted to drugs or alcohol.
God diddles in our lives. No doubt about that. He puts people and events in our lives that protect us, inspire us, move us, affirm us, and strengthen us along the way. I believe this: God knew that if I had started down the road of drugs and alcohol, there probably would not have been "recovery" for me. I've always been a "balls to the wall or nothing at all" kind of guy. If God had not intervened and protected me, I would not be alive today. I know I'm not strong enough to go through what I see recoverying alcoholics and addicts go through to stay alive.
Addiction is a terminal illness. If left untreated, it will kill the addict. That's the bottom line. A lot of addicts don't get serious about their recovery until they've come to that painful awareness. They have a terminal illness. They will die from it. But treatment leads to recovery, and recovery leads to life.
I believe that God knows my weakness. I believe that he put people, places and events in my life to keep me from going down that road. There were plenty of times when I had opportunity to use, but something interfered.
An example: I spent the entire spring semester of my junior year in college seminary drunk. That was the semester my great-grandfather died, and I felt incredibly betrayed by God. That was the semester where I really confronted my fears that if God existed at all, I thought he was an abusive, manipulative, asshole who enjoyed setting me up for failure to get his kicks. (I have of course come to understand Him very differently since then, but there's no doubt my image of God the Father was formed by my step-father.)
One morning towards the end of that semester, I was nursing a hang over and a cup of coffee, thinking about when I was going to go into town to buy another bottle of cheap scotch for that night. A guy who I knew was connected with AA came over to me.
"Can I talk to you for a second?" He asked.
I grunted.
"You know how to turn a cucumber into a pickle?" He persisted.
"No, I don't know how to turn a cucumber into a pickle." I was trying to let him know I also didn't really care at the moment.
"You soak it in vinegar," he said. "There's a long time where you can pull that cucumber out of that vinegar, and it will still be a cucumber. But once it turns into a pickle, it'll never be a cucumber again. And you don't know when that moment will be."
"Very enlightening," I said.
"You know how to make a guy an alcoholic?" He asked. I didn't really like where this was going. "You soak him in alcohol," he continued. "There's a long time where if a guy stops drinking, he won't be an alcoholic. But at the moment he flips that switch and becomes an alcoholic, there will never be a time for the rest of his life where he will not be an alcoholic again, and you don't know when that moment will be either." I didn't say anything to this. "I hope you think about that," he said as he got up from the table.
I didn't go buy that scotch that night. I didn't drink any alcohol again for probably 2 years. I can say that I've only actually been drunk 2 times since that conversation in 1995.
God put that guy in my life at that time to keep me from going down that road. I praise God that he also put the grace in me to listen to him. God also put dozens, maybe hundreds of people in my life that I may never even know about, who stepped in at various moments to keep me from going down a path from which I would never have RECOVERED.
What makes an alcoholic an alcoholic? It's not just soaking him in alcohol. There's a whole lot of other things that go into the thinking, attitudes and behaviors that alcoholics and addicts have. It's in their core, in their hearts and personalities. I believe I have those wounds, tendencies, weaknesses, "defects of character" in me. I believe God has protected me from drugs and alcohol, although my defects have come out in other ways in my life. I begin to recognize those defects of character more and more as I maneuver my meandering way through life.
So I believe (I hope that those who are in recovery from drugs and alcohol don't get offended by this) that while I have never been addicted to drugs or alcohol, I am in recovery. I am trying to work on those defects of character that have wounded so many people in my past, more people than I can possibly count, honestly. I know that I have left behind me a wake of wounded people. I am in recovery. Even the Alcoholics Anonymous big book (and my brother could tell you the page number) says that most people are sick, and only some express that sickness through addiction to alcohol and/or drugs.
I claim that recovery.
There's a myth out there that a lot of addicts join in as a way to keep them from having to work with "straight" counselors. The myth is that "If my counselor has not been an addict, he/she can't really understand what I'm going through, so there's nothing he/she can teach me." Unfortunately, that's a myth that many counselors have bought into, too.
With this myth in mind, many of my clients ask me if I'm in recovery. I've always wanted to say yes, but wasn't quite able to give that answer without feeling disingenuous. I claim my own recovery, now. Yes, I'm in recovery. Was I addicted to drugs and alcohol? No. Do I have defects of character that make me vulnerable to addiction and lead me to hurt people in my life? Absolutely, I do. And that's why I'm in recovery.
Tuesday, August 02, 2011
Observations on Infancy
I am amazed that life exists.
I mean, seriously, it's a wonder we survive past infancy.
We've heard, "Well, Nathaniel's bone marrow, because he is a baby, isn't quite fully functional, so he's not making enough of his own blood at this time anyway, and then with the extreme blood loss he suffered..."
We've heard, "Well, Nathaniel's lungs are immature because he is a baby, and then to have an injury to them like he sustained, ..."
We've heard, "Well, Nathaniel's an infant, so the soft tissue around his heart and lungs isn't quite firmed up yet, so we think that..."
Throughout this whole ordeal with Nathaniel, I've lost count of how many times I've heard, "Well, first of all he's a baby so his (fill in the blank) is not fully developed/functional/firm/..."
It's no wonder the infant mortality rate up until recent history was so high. If so many of our bodily functions are not completely up to par when we're born, it's a wonder more babies aren't lost each year. And by "bodily functions," I'm talking about things that are kind of important, like, oh, breathing, heart beating, and, I don't know, making blood.
The ancient Romans would not name their children when they were born. The first born would be called "Number 1," the second born, "Number 2," and so on. They didn't expect their children to live past being toddlers, so they didn't bother naming them until they were pretty sure the child was going to live into adolescence. True story.
So, this past month (Nathaniel is now over 1 month old), I've been reflecting on how fragile human life is from the very beginning. As far as we can tell, his hemophilia was caused by a random gene mutation on the X chromosome. Weird. Something so little can cause such a response in the human body.
Life is fragile. This wonderful, amazing, undeserved gift hangs by a thread. I am filled with wonder and awe that it can even exist at all. Pretty amazing.
I mean, seriously, it's a wonder we survive past infancy.
We've heard, "Well, Nathaniel's bone marrow, because he is a baby, isn't quite fully functional, so he's not making enough of his own blood at this time anyway, and then with the extreme blood loss he suffered..."
We've heard, "Well, Nathaniel's lungs are immature because he is a baby, and then to have an injury to them like he sustained, ..."
We've heard, "Well, Nathaniel's an infant, so the soft tissue around his heart and lungs isn't quite firmed up yet, so we think that..."
Throughout this whole ordeal with Nathaniel, I've lost count of how many times I've heard, "Well, first of all he's a baby so his (fill in the blank) is not fully developed/functional/firm/..."
It's no wonder the infant mortality rate up until recent history was so high. If so many of our bodily functions are not completely up to par when we're born, it's a wonder more babies aren't lost each year. And by "bodily functions," I'm talking about things that are kind of important, like, oh, breathing, heart beating, and, I don't know, making blood.
The ancient Romans would not name their children when they were born. The first born would be called "Number 1," the second born, "Number 2," and so on. They didn't expect their children to live past being toddlers, so they didn't bother naming them until they were pretty sure the child was going to live into adolescence. True story.
So, this past month (Nathaniel is now over 1 month old), I've been reflecting on how fragile human life is from the very beginning. As far as we can tell, his hemophilia was caused by a random gene mutation on the X chromosome. Weird. Something so little can cause such a response in the human body.
Life is fragile. This wonderful, amazing, undeserved gift hangs by a thread. I am filled with wonder and awe that it can even exist at all. Pretty amazing.
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