A Journey Through Chronic Pain

Doesn’t the saying go? There is a season for everything. A time to reap, a time to sow, a time to be born, a time to die, a time to build a time to tear down? Well, the years spent in NY were to become all of the above and more. It’s funny how we go through the seasons in our life with hardly a bit of notice sometimes. But the seasons I was about to experience would bring me to my knees and turn me inside out.

Living in a world of chronic pain/narcotic addiction is a very strange place to be. This was the longest stretch of my life to be in such a predicament. But yet being in a new place made for ample opportunities to really screw things up. I tried, I really tried to muck up my life to the best of my abilities. And up to a point I truly did. And the more I think about it, the more I have come to realize that many of my issues go back to my childhood. I am not going to place blame on anyone for any of that. Most of the demons where in my own head. Some related to an overriding lack of self-esteem at many junctures, part of it due to being an ACOA ( Adult Child of Alcoholics). The other thing I think came into play at some point is fear. As a youth I experienced some physical issues, appendicitis, bowel obstruction, and for many years lived in fear that something related to that would reoccur. I suffered with abdominal pain through most of high school and even into my early married years. Part of this was organic in nature but part of it was not. I think it came largely out of an inability to cope with the rigors of burgeoning adulthood, early married life, and a general lack of skills to cope with conflict, stress, etc. I have most of my life, been the type of person who internalized many or all of my feelings, particularly the negative ones. And I think as a result that has eaten away at me from a physical and emotional level.

As a child, I had a long history of GI issues. At one point, I overheard a discussion my parents were having late one night while they assumed I was asleep. One the doctors I had visited suggested that part of my symptoms could be related to more than physical issues. He had suggest a psychiatrist and/or psychologist. My parents had a heated discussion on this matter but at no time then or EVER said anything to me nor did they pursue any kind of treatment along these lines. I realize that it was a time in medicine when mental health issues were still pretty much taboo. The stigma of a mental illness carried broad ramifications, most of which were poorly understood by the general public. So they chose to do nothing and let me flounder for what was probably several years of my life. I was too young to understand it all, but old enough to know that things were not what they seemed.

By the time my body was subjected to the physical ravages of the orthopedic issues I faced, I feel like I had worked through most of the childhood crap that had dogged me for so long. I had put aside the hurt and the feeling that I somehow was never quite up to the standards my mother set, and also was able to forgive much of the lack of engagement that I felt was a result of my parent’s alcoholism. I guess the one thing that being an ACOA did for me is somehow keep me from following that path. Not that I didn’t drink. My freshman year in college I tore it up!! I settled in with a bunch of guys who were already 21 and used them as a venue to obtain alcohol illegally. After showing up at the local liquor store several times with them, I was able to buy with no problem. It helped that I was always a big guy for my age. My room mate and I were conspicuous consumers of just about any brand, flavor, type or whatever when it came to booze. Time of day had little relevance. Weekend, weekday, didn’t matter. In fact, we got into a routine where Monday nights became a big night to drink. The weekend was over, Monday’s classes were done. It was time to celebrate!! And we did. But beyond that one year, alcohol was not a big issue. There were times when I drank more than others. The whole journey with Bruce was one of those. But with relation to my physical pain, alcohol never became a cross addiction. The times I used it most were during the times when I was in active withdrawal. It tempered the symptoms for a few days while my body was being purged of the narcotics. It allowed me to sleep sometimes when I would have gone days without otherwise.

The time in NY was passing quickly. We had moved into a great neighborhood, small, mostly all transplants like ourselves and relatively close in age. We were neither the oldest nor the youngest. I had at this point progressed to a regimen of either Oxycontin or Duragesic, depending on the dates in question, along with hydrocodone as a break through med and some Ultram thrown in for good measure. Top that off with muscle relaxants to combat the back issues and I had quite the ######## of drugs. In 1999 after having been there less than a year, I came down with a viral illness which over the course of couple of weeks, left me dehydrated. As a result, the level of meds in my system began to get more and more concentrated as my circulating volume decreased. There was a week period of time where I had no recollection for anything I did. I continued to function but I am not sure how. I drove (which is scary as shit) did the grocery shopping, and went about a fairly normal routine. One morning, I was apparently hard to arouse. Jeanell and Grant drug my sorry ass to the ER where they determined that I had pneumonia/pulmonary edema. I spent 24 hours in the ICU, mainly because of my lungs and also because of the level of narcotics in my body. Some fluids helped to flush things out, but the warnings of the doctors were quite ominous. Stop the drugs or die!

I awoke a day later, not quite knowing what had happened but thankful to still be kicking. Over the course of a few days, I began to suffer frank withdrawal. There was some pharmaceutical help provided, but precious little. Night are always the worst. Shaking, chills, body aches, the feeling that your arms are being ripped out of your shoulders!! Unless you have experienced it, you have no idea how it feels. I have to say that during active withdrawal is the only time I have ever contemplated suicide. It is that bad!

At home I was left largely to my own devices to get off the meds. Jeanell’s parents came to help with the boys and I was filled with a new-found boundless energy for a couple of weeks as the drugs worked their way out of my system. The nights were horrendous. I slept little, but made it through the days with ease as long as I kept moving.

This was to be the start of a period of a few years without any significant drug use. I had been given another chance, a new lease on life so to speak and I was determined to make the most of it.

In the fall of 2000 I began to have severe abdominal pain. This progressed to horrible vomiting which was soon diagnosed as a complete bowel obstruction. Now it had been at least 30 years since I had suffered any real GI issues. After being admitted through the ER, I found myself in the OR within the first 24 hours. The surgery was uncomplicated and I was home in about 4 days. I went home on a Sunday. It was early November. Jonathan was playing in the biggest football game of the year, 7th grade, under the lights at the high school stadium, the last game of the season. It was colder than balls but I was determined to attend. I felt like shit, hurt like hell, but nothing was going to stop me from going. We drug and old wheelchair up from the basement, loaded me up with fluids and blankets, and I sat on the sideline and enjoyed the game. Well, up to a point. As the night progressed the pain in my belly just kept growing. By the time we got home, I was doubled over. Then came the vomiting. All night I puked up green bile in huge amounts. Wretching only made the pain all the worse. In the morning, Jeanell called the surgeon and we headed to the ER. Down went the requisite NG Tube, my favorite thing on this earth! Within a few hours it was determined that I had suffered another obstruction, again requiring surgery. Only this time things were different. When the surgeon opened me up, he found the result of what he called, “the most horrendous scarring he had ever experienced” and it involved most of my small intestine. He actually described removing bowel tissue the consistency of concrete! 5 hours later and a chunk of small bowel left on the OR floor, I was wheeled into the PACU (Post Anesthesia Care Unit). As I awoke I was in so freakin’  much pain I was literally white knuckling the sheets and writhing on the cart. The PACU nurse was giving me mega doses of narcotics, but then hit the point where my blood pressure started to bottom out. All night I suffered death until finally a bit of restless drug-induced sleep came. I awoke later the next morning (the surgery had not been started until 6pm due to scheduling snafus) hoping that I was finally on the road to recovery.

Over the next few days I made progress toward going home again. Unfortunately my gut was doing nothing. The trauma of two major operations in two weeks had pretty well knocked it down for the count. But it would recover, hopefully.

About the 4th post-0p day, I awoke very early in the morning, long before daylight. I stood at the bedside to use my urinal and when I stood I noticed a sero-sanguineous drainage on the front of my hospital gown. There were even some drops on the floor below where I stood. It was sort of foul smelling, which I knew meant trouble.

Just after 7AM, the surgeon made rounds. As he pulled back to sheets to check my dressing, he saw the ominous spots on my gown. He asked what that was. But he and I both knew. He pulled back the dressing to find foul-smelling pus oozing from the wound site. We both kind of looked at one another and never said, but thought, “####”. He left the room and returned with a nurse and a dressing cart. The smoldering infection had to be dealt with and quickly. I had already spiked a fever and now the race would be on the squash the infection before it got worse. He proceeded to rip open the staple line in my belly, and open the wound down to the level of the fascia. This gaping hole in my belly appeared, into which gallons of irrigaet were poured and finally it was packed with sterile dressing and loosely covered. You have no idea how much all of that hurt. When he finished I was lying there, my bed totally soaked with fluid, my body totally wet and shaking from the cold. The nurse who assisted in all of this was so cool. I was a mess, emotionally and physically. They had planned to discontinue the PCA that morning (patient controlled analgesia), but in light of this there was no way! The irrigations would be required several times a day along with debridement of the wound. The fun was just beginning!

The next day I started vomiting again. Joy of joys!! The fluids I had been given started coming right back up! So now some digging would have to be done into why. A CT scan revealed the fact that I was still obstructed. This was confirmed with a small bowel series with follow-through of the contrast. Nothing was moving. So any nutrition by mouth was out of the question. Even the tube-feedings would have to be stopped for the time being.

At this point you can imagine that my mood was not the best. I was looking at a protracted hospital stay in order to be maintained on IV fluids and ultimately TPN (Total Parenteral Nutrition) and mega doses of IV antibiotics. In the meantime, I would have to chill while hopefully my gut was take the initiative and begin working, with the hope that the obstruction would spontaneously resolve. Over the next few weeks I underwent wound treatment at least 3 times a day.

Again, being confined to a hospital was nothing new for me. My experience started early and had been pretty steady up to this point. But now I was very ill. My fever continued to worsen. One day the surgeon came in a looked at me with this kind of woeful expression. I asked what was wrong. Lying there, feeling like absolute ####, shaking chills, burning fever. He told me that I was the sickest patient in the hospital. Now that made my day!! NOT! I said “oh you mean in the general population, right?” and he said no, that includes the patients in the ICU! I kind of freaked-out, not quite knowing what he was saying. I was losing weight in a wholesale fashion, had a raging infection, and still was obstructed. How much worse could it get!! I came to the realization that he was trying in a round about way to tell me that I was SICK!! My head raced with all of these thoughts of “what the hell?” Am I going to make it through this?? Am I really going to come out the other side?? I have to tell you that facing your own mortality is a sobering thing. It is beyond anything I had experienced up to this point. But it also did something else. It got me going! At that moment I made the decision that I was not going to let this thing get the best of me. That from that day forward I would do anything in my power to move forward, one day at a time. And obviously, something worked!! I am still here!

One day the surgeon walked into my room on rounds. I had now been there nearly a month. He had yet to start me on TPN in the hope that my gut would begin to function. It wasn’t happening. I had just undergone another series of x-rays only to have them confirm what everyone suspected. I was still obstructed! I looked at him and said, “I want to go home”. He gave me this puzzled look, one only a surgeon can I believe. He then said that he didn’t know that I had wanted to. Silly boy, who the #### wants to lie around a hospital, when they are doing little for you but IV’s when you could be chillin’ at home???

It was like this light bulb lit up over his head! I could really send him home!! It was a day before Thanksgiving when I finally was released, but not until I had a subclavian line inserted to facilitate the TPN administration, as well as the continuing antibiotics. By this time I was weaker than hell. I had been walking the halls but that’s the only exercise I got for that month. And truthfully, there were days when that was nearly too much. In my debilitated state it would take months to recover providing my gut would cooperate and begin to work again.

So I went home to a new routine. Multiple daily dressing changes with irrigation, a refrigerator full of 2 liter bags of TPN, IV antibiotics, the whole shebang! Life was interesting if nothing else. Even the boys got into the act with the irrigations and dressing changes. Slowly I healed. The gaping wound in my midsection began to close, ever so slowly. The resulting scar has left me self-conscious about my upper body, not something I wish to parade on the beach with.

Eventually, my gut did start to work and my diet was advanced, very slowly. In about late February, everyone involved felt like the G-Tube and IV could come out safely. I was taking enough by mouth to sustain myself. By mid-March, most everything had healed. Physically, I was getting stronger all the time. Mentally was a different issue. Going through all of this had taken a toll on my psyche. I felt lost, I felt confused, I felt like I needed to re-examine my life and make some changes from this point forward. The year was 2001. That year would bring some changes to my life that I had neither anticipated nor were ready to deal with.

I am going on a family trip for 10 days and when I return, I will take up the next chapter. For anyone following this blog, take care enjoy the next week or so!

So it is 1989. Mother is gone and dad is living with us. As luck would have it, we found a house in a neighborhood three blocks from the house we were renting. It was being sold as part of the execution of an estate where both of the people had died. It was being administered by the son’s, one of whom lived across the street.
The house was a 1970’s model brick ranch, three bedrooms two baths, and one feature that proved to be perfect for us. One half of the basement was finished into an apartment that had an entrance through the garage. The people who had lived there had fixed the basement for their son who got married while in the military and came home once his tour was up. He and his wife had lived in the basement for a period of time.

The yard was perfect for the boys as it was full of mature trees with plenty of room for a swing set etc. There was covered patio on the back side which proved indispensable for outdoor entertaining. And there were kids in the neighborhood!

Dad found a place to hang his hat, dealing with the profound sadness that had overtaken him following 43 years of marriage and the loss of his partner. It was not ideal but it worked for a time.
Having another person in your household is a different animal. The loss of privacy is significant and over time takes a toll on everyone concerned. But overall we made the most of having him with us. It was an amazing time for the boys to have access to their grandfather. Particularly Jonathan. He was grandpa’s little buddy. He would go downstairs for breakfast with grandpa, dad would push him on the swing until he was exhausted, and watch movies with him if I had to be gone.

It was also during this time that we lost the remainder of dad’s support system. His brother and sister-in-law who lived in Omaha were frequent visitors. He also traveled there to spend time with them. His brother in CA was not around and ultimately committed suicide. Uncle Jim and Aunt Ellen had always been close with my folks. He was my dad’s little brother. He was a jokester and in most people’s eyes bigger than life. He had a heart as big as all outdoors!

The exact year escapes me, but one day we got a call that Jim had been diagnosed with lung cancer. He was dead in a matter of months. Dad took it hard. He now had nowhere to travel, no connection to his family. He had a sister with whom he had been estranged for many years, and a another brother in AZ who also died during this time frame. So he was the remaining connection to our past. Our best source of history, of our ancestry!

It was during this time that my hip was terminal. I had nursed it for so long and it now was to the point where it was about ready for replacement. I finally did it in 1992! October to be exact. The surgery went well, but I was left with a hip that was exquisitely painful and clunky. Having a total hip on the side with a fused knee is a challenge. Getting the position right so that it is stable and not too easy to dislocate is a real chore. Well, in April of ‘93 I went back to the OR for a revision that provided some improvement. But for the life of the hip (which was revised in December of 06) it was painful and made all sorts of the craziest noises imaginable.

In 1991 dad came to the realization that there was a woman living in KC who 30 years previously, with her husband, had been friends of my parents. Her husband had died several years before and one day he called her and talked for long time. The subsequently went to lunch one day and as they say, the rest is history!! The eventually married and now are set to celebrate their 17th(?) anniversary. He moved in to her home after the wedding and we continued in the house in Liberty until 1993 when we decided it was time to move south, to position ourselves closer to Jeanell’s office.

Her career had progressed and after Jonathan was born was done with nursing for good. She made her transition to and administrative position and in 1990 started her MBA preparation through Rockhurst College. Working days and attending school at night was a tough way to go. But she did it and wound up with her MBA and nearly a 4.o average.

Her new office was in south K.C. so the commute from Liberty was becoming ridiculous. I went out and started looking at property in south KC etc. We finally settled on a house in Lee’s Summit. It was new, first floor master, and in a new neighborhood that was loaded with kids. It was also just a stone’s throw from the boy’s school. In November, the week of Thanksgiving in fact, we made our move to L.S. It was a move that would be both good for us but would open another chapter in my life of pain and addiction.

After we were settled, barely by Christmas of ‘93, it was time to check out the new neighborhood. We were only about 30 miles from our old house, but an entirely new community. It was here that we chose to pursue the religious upbringing of the boys. Neither had been baptized nor had any formal education in any kind of religion, let alone the Catholic tradition. I had been born and raised Catholic, Jeanell Presbyterian and a convert to Catholicism when we married. So I contacted the local church and we started the process of classes in preparation for their baptism. During this process the woman teaching the class and I started to talk about faith, the church etc. She thought a good way for me to support the boy’s new-found religious education would be for me to teach in their Religious Education program. After much protestation, I agreed. A couple of weeks later she told me that she had paired me up with a woman, with 4 children who she thought would be a great teacher, and a good fit for my first co-teacher. Little did I know that she had paired me with someone from my very distant past! In the interest of discretion, I won’t name, names! But it was someone I had known since 1973 and had attended high school with. When the director told this person who she had paired her with she nearly shit! Neither of us knew that the other was even in the same area, let alone the same town! So a few days later I got a call from “C”. What a strange turn of events. Neither of us had been in contact practically since high school. We had crossed paths at a class reunion but once in more than 20 years.

I had much to learn before the first class! This woman was an accredited teacher, me nothing even remotely close to that. I had done a lot of teaching at CMH, but that had been more than 10 years before! Here I was about to step into a class of 5th graders, totally unaware what it takes to manage a classroom or keep a bunch of kids in line for an hour or so a week.

Our collaboration lasted but one school year but I learned a lot and continued on with my own class, even going on to a junior high Bible Study group. I also began a process through the Center for Pastoral Life and Ministry that would cover more than three years, and provide me and the other participants in an excellent background in preparation for the lay ministry. The course met half-days once a week and provided everything from Church History to reflective listening! It was excellent, well taught, and very participatory! Something that was very positive for me. Unfortunately, it was not in the cards for me to finish. Less than 6 months from graduation, we made the decision that Jeanell would accept a job in upstate NY. This was December of 1998. She would start mid-December and the boys and I would join her at the semester’s end in later January.

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SideBar: I guess an explanation as to my longstanding aversion to the Catholic church would be in order here.

Having been a “cradle-Catholic” my migration away from the church was not something that I took lightly. I had nearly become a priest, and believed during most of my formative years that it was what I was destined to do. From the time I became an acolyte in about 2nd grade, I had been totally wrapped-up in the Catholic Church. I served mass, I sang in the choir, I attended Catholic school through 8th grade (and more than likely would have attended Catholic high school had one been available), and counted the parish priest as a friend and mentor. During my tenure in Catholic school our parish had several different priests. It was about my freshman year in high school that a priest was transferred to our parish who would have a profound effect on my faith formation. Fr. “J” was someone I looked-up to. Someone with whom I developed a fast friendship. His family was well-off, his father owning his own business. Fr. J was kind, empathetic and very supportive of my pursuit of the priesthood. As I progressed through high school he continued to groom and mentor me with the idea I would attend seminary after high school.

In the middle of my junior year, the parish learned that Fr. J was being transferred 60 miles away. Everyone was devastated. He was well liked, personable, and felt like part of the family. During his tenure, a young Deacon ( a priest who is in his last year before ordination) came to spend several months at our church. He was young, not that much older than I, energetic, and we became fast friends. He came to my home for family dinners and we did many things socially together. During my senior year, a group of my friends and I were invited to attend his ordination in Jefferson City. It was a very solemn, awe inspiring ceremony, followed by a huge party thrown by his extended family, which was quite huge!

The summer following my senior year in high school was filled with hard work and hard play. I enjoyed my last few months of freedom before heading off to college. During the summer, Fr. J invited me to spend a weekend with him and talk more about my college plans for the fall. I had been sort of all over the place that spring and summer with college plans. Originally I had planned on nursing school at Mizzou. I then changed that to attending NMSU in Kirksville, partly because I was put off by the size of MU and partly because my girlfriend was attending NMSU (now Truman State).
In mid-summer, I made the trip to see Fr. J. It was like old home week. I arrived on Friday afternoon, we talked for hours, catching up and then went to dinner. Afterward, several of the nuns who lived next door came for drinks. They all had a great time while I did a lot of listening and hanging out. There were two other priests who normally lived in the house, but one was away on vacation and the other official duties.
When it came time for bed, I readily volunteered to take the sofa. Fr. J informed me that one of his house-mates would be returning in the wee hours of the morning. The other the next day. He suggested I sleep in his room so as not to be disturbed by the inevitable traffic in the living room. I agreed that I could sleep on the floor and be out of everyone’s way. We both got ready for bed, but ultimately he had other ideas about me sleeping on the floor. He suggested I join him, which I declined. When I did, he came to me and started trying to kiss me! I freaked-out!!! He tried to muster some lame apology but I knew right away what his intentions were and wanted no part of it. The next day was very cool between us, and by evening, I told him that I need to go home.

I had trusted this man implicitly, and was betrayed by him in the ultimate fashion. I left and we never spoke again until he called my parents house the next January as I was preparing to leave for the seminary. The decision had largely been forced upon me, but I agreed to give it a shot. Fr. J called to encourage me and I told him that my inclination now was to forget the whole priesthood thing in lieu of a “normal life” . I had during my junior and senior years discovered girls!! This fact made the prospect of celibacy almost laughable. That and the incident in the rectory where I was nearly molested made me sour on the whole Catholic faith as a whole. And this was much before (20 years) the whole business with the exposition of the pedophile priests broke! I did briefly attend a college seminary in Ohio that winter, but only found more evidence of gross sexual perversion in the ranks! After two weeks, I packed my shit and went back to Kirksville!

One night in the early 2000’s my sister called me late, like 1030 PM. She told me I had to turn on 20/20. That a former parish priest of ours was one that had been named in the pedophile priest scandal. Sure enough, there was Fr. J. He had left the priesthood and was then married with children. I learned about that time that the young deacon who had also been at our church had left the priesthood and was married! I actually ran into him in KC in the early 2000’s. Strange turn of events!!
So you may be asking yourself, “why didn’t he jump on the bandwagon”? Pure and simple. What had happened 20 + years ago would never be erased by any amount of money, nor adding my name to a list of potential victims. I had never considered it, not at the time and not when the whole thing exploded!

It is interesting to note that I had told my parents what happened at the time I was being somewhat railroaded toward the seminary. I am quite sure that neither of them believed me and thought it a ploy to help me evade the seminary. Even today, my father largely denies the whole scandal with the priests as we have talked about it in principle. He feels like it is a case of “copycat” litigation and that most of the stories were made up! He couldn’t be more wrong!

So end of sidebar! Now you know why I have such disdain for the Catholic church!

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During my time in Lee’s Summit, my knee was going through the final stages of degeneration. I had been crutch dependent for some time. I had worn a knee brace for many years. I had been using chronic narcotics for a few years in an attempt to push back a total knee. I had used a combination of Oxycontin and hydrocodone or oxycodone (short acting) and progressed to Duragesic patches. In 1997 my knee had become so useless that the docs finally decided it was time to do the total knee! So in July of 1997 the surgery was performed. Rehabilitating a total knee was much more difficult than had been rehabilitating my total hip. And after I got home, I developed a DVT and was confined to bed for two weeks while it resolved. Finally I was back on my feet! Better than I had been in a very long time. I was still racked by pain from my hip and back but was moving some better. In January of 1998, we said goodbye to Lee’s Summit, and to Missouri and headed north and east! A new adventure awaited in NY. An adventure that nearly cost me my life!

So the year is about 1987. Grant is now 5 and life has gotten back to some semblance of sanity following the whole back injury/treatment fiasco. We have decided that my place should be at home (which is where I have been for a few years now) to care for Grant and possibly consider having another child. In light of the fact that I am fairly stable physically except for the steadily increasing pain in my right hip and left knee, being a stay at home parent makes perfect sense. Jeanell’s career is steadily progressing and she is willing to support the family financially while we figure more of this out.

Over the course of the next ten years the need for narcotics for pain control is rather hit or miss. It becomes necessary to have my knee arthroscoped about every six months (sometimes more frequently) in an attempt to salvage some function and prolong the time until a total knee can be considered. Most of the drugs I used during this period were related to acute exacerbations/surgery and were not a big problem.

We had sold our home in Pleasant Valley, MO after a period of time since I was no longer able to work in order to get ourselves financially on track. After a year in a duplex(during which time Jonathan was born) and a year in a rental house, we were ready to tackle home ownership once again.

In 1987 we found out that Jeanell was pregnant with Jonathan. We also discovered that she had a situation called “placenta previa” in which the attachment of the placenta either partially or totally covers the entrance to the uterus. This necessitates a caesarean section. The other huge risk is bleeding. If the placenta begins to pull away from the opening of the uterus, profound bleeding, life-threatening to the mother and child, is possible. For many weeks the pregnancy sailed on uneventfully. Jeanell also suffered with ITP with both of her pregnancies. Idiopathic Thrombocytopenic Purpura (http://en.wikipedia.org/wiki/Idiopathic_thrombocytopenic_purpura). It is essentially a condition in which the platelet count in the blood is low, secondary to autoimmune factors or for unknown reason (hence the term: idiopathic). Her platelet count normally is somewhat borderline but during both pregnancies dropped significantly.

Pregnancy always agreed with Jeanell. She never had a lick of morning sickness, always looked glowing, and slept exquisitely! It was now just into the month of February of 1988. February 6th to be exact. It was a Saturday morning. We were living in a duplex in Liberty, MO near William Jewel College. Jeanell got up and went upstairs to take a bath. Grant was up and eating breakfast. About 10 minutes after Jeanell headed to the tub, she hollered for me to come up stairs. I asked what she needed, and she repeated the request for me to come up. So I hurried upstairs. There I found her in the tub, very little water in the tube, and a huge amount of bright red blood and clots. She told me to get the number for the OB doc and give them a call and that we would be going immediately to the hospital. Now it seems like things moved in slow motion. I called the doctor’s service, called Research hospital, and got dressed. It was a very cold February morning in K.C. Jeanell had come down stairs, blood flowing down her legs and onto the carpet. I finally told her not to move! I grabbed a bunch of towels, we packed them between her legs and headed to the car. My old Suburban was the vehicle of choice. It took a bit to warm up but was normally a beast. We piled her in along with a dazed Grant and headed out. I am not sure how fast I drove to the hospital but it certainly didn’t take long. Once in the ER they went about the job of trying to control her bleeding and to keep the precious cargo within safe as well.

Within a couple of hours, things had settled a bit, the bleeding had slowed, and she was admitted to the hospital. Once she was settled, Grant and I headed home to retrieve her “maternity stuff” and to clean up the blood that was lying around our duplex. When I walked in it looked as though we had walked into the Manson’s crime scene. There was a trail of blood from the upstairs bathroom down the stairs, to the kitchen, and back to the front door. A couple of hours and lots of soap and water and the duplex was back to normal We headed back to the hospital to check on Jeanell and our yet to be arrival!

Everything was pretty normal on Sunday. It was decided since mother and child were both very stable, that the c-section would be Monday morning. It was 6 weeks before her due date so the risk to the fetus was small, yet present. On Monday morning, Jeanell was taken to the OR with me in tow. I scrubbed in and stood next to the anesthesiologist while she was prepped and draped. The doc looked at me(the OB doc was one of her co-workers) and knew me and knew that I could handle being in for the c-section. So did the anesthesia doc. About 30 seconds after the IV was flushed with good drugs, a transverse incision was made and out popped our little boy. C-sections are bloody operations. I have the photos to prove it. Jonathan was 7 lbs. 12 oz. Being 6 weeks early he did have a few issues with breathing as at this age surfactant (the goop in the lungs that helps them expand and stay that way can be in short supply. He required a few days in the intensive care nursery on Oxygen and monitoring. All in all he spent a bit over a week in the hospital post-partum and so did we. Research had rooms on an upper floor that were rented to parents with infants in the NICU. On about the 7 or 8th day we were allowed to take our bundle of joy home. For a premie he was well developed, lots of hair, and a good set of lungs.

So we were back home with a new baby. Grant was now 6 and the perfect big brother. Loving, attentive, helpful with his new baby brother. Life returned to a somewhat normal routine with a new baby in the house. It was after Jonathan was born that the doc told Jeanell that because of the ITP, we probably should not have more kids. He offered her the options but we had already decided that I would get “fixed” in order to solve that problem. No big deal, really. Snip-clip and out the door.

That summer we decided that we needed more space. So I found us a lovely home to rent in the southern most suburb of Liberty. The house was old but had been very well maintained and had a fenced back yard for Grant to play in. We set about moving and getting settled. Jonathan was just a few months old when we moved. That summer we also had company. Jim Coulson, Gary Schaeffer, and Jim’s wife Maggie came to visit. Deidre, their daughter was very little at the time. I had not seen Jim and Maggie since their wedding in about 1984 or 1985.

It was this winter (1988) that we would get some devastating news. My mother had been diagnosed with breast cancer in about 1983. She had passed the 5th anniversary of her mastectomy and treatment, cancer free. In January of 1989, she began having severe pain in her low back and ribs. The x-rays, and subsequent C-T showed bony metastasis. This was after being “cleared” in December of ‘88l. She was started on a course of radiation to try and shrink the lesions. She had been assured that there was no organ involvement, liver, pancreas, spleen, lungs, all clear.

Jonathan’s first birthday came in February ‘89. In April, in fact within a day of mom and dad’s wedding anniversary, mom started having severe abdominal pain. Dad took her to the ER where it was determined that she had a bowel obstruction. Not all that unusual with radiation therapy. The local surgeon took her to the OR on their anniversary, April 27th. The news was not good. He had found evidence of tumor spread to most all of the organs. It couldn’t be determined whether or not there was spread above the diaphragm (the big muscle that separates the abdominal cavity with the chest). Nothing could be done for her was the bottom line.

Jonathan and I drove to Macon where she was hospitalized. That day I spoke with our family doctor who was also her surgeon, and indeed the prognosis was grim. I asked him point-blank how long she had and said it could be anywhere from a few weeks to a few months. What she wanted more than anything was to go home. He didn’t feel like that was an option considering her condition and the scope of care that she would likely need. I assured him that between Jeanell and I we could do most anything she might need in the way of palliative care. So he agreed, in light of the fact that we both had medical backgrounds.

I spent the next few days making scores of phone calls to insurance providers, physicians, hospice, medical equipment dealers, all trying to put together a scenario that would allow her to come “home” to Liberty with us. Dad was in no shape to care for her as, in the middle of all of this, he had suffered an MI and was himself fairly fragile . We decided that it would be best to take her to our home since it would be easier on all of us, especially Jonathan who at the age of one spent a couple of weeks with me in the hospital while I made the arrangements to bring mom home for one last time. He was an amazing child. Never cried, was so non-demanding in spite of spending hours a day in waiting rooms. The perfect angel. Grant stayed in Liberty with Jeanell as he was in school.

So about the 10th of May, everything was in place to go home. She was to be transported by ambulance to Liberty. Waiting when we got there would be a hospital bed and all of the supplies to operate a sick room. We had a doc locally who agreed to provide medical support in spite of the fact he knew neither us nor mother. Hospice would be involved to provide support. And a DME (durable medical equipment) dealer was providing the hard goods.

Caring for a sick person 24/7 is an exhausting task. It requires shifts to ensure that the caregivers receive at least some sleep. It requires much physical as well as emotional energy. We were truly worried that if it took weeks or even months, we would not survive the rigors of full time care giving.

Mother’s Day was a special day. Jim and Mary both came to visit. Mom got up and sat in a chair, ate a bit of lunch and her pain was in fairly good control. She was being given a Morphine solution for pain control. It was easier to swallow than pills or capsules, but tasted awful. One thing we did make sure of is that she had very adequate pain control. Staying ahead of the increasing pain was so important. We dosed her round the clock with more for breakthrough.

On the Monday following Mother’s Day, she began to complain of shortness of breath. I called the doc and hospice and they suggested some oxygen to make her more comfortable. She was also started on an IV to provide fluids as she was not drinking adequately. Her caloric intake had dropped to nearly zip. On Tuesday she was in more discomfort, her pain level was up and she was more short of breath. Her color also began to fade. Now, being a Respiratory Therapist, I had watched any number of people die. I knew the process well, and the signs were all in place for this thing coming to a rather quick conclusion. During the night on Tuesday, mom was more and more short of breath. We had increased the oxygen to provide more comfort. It didn’t help. We also ratcheted up the Morphine as her pain was becoming more severe. About 2:30 AM dad had been sitting with her and was looking really tired. I had slept for a bit and got up to relieve him so he could get some sleep. Her breathing was more and more labored. But through it all she was awake and alert and talking to us. I took up the watch and about 4:30 AM she asked me if she could turn on her right side. I found this bizarre as she had not been able to lie on that side since all of this started because of the level of liver and rib involvement. So I helped her turn on her side. She told me how wonderful it felt. Mom had always slept on that side so it was a natural place for her to be. She looked at me and told me she loved me. She then stopped breathing and that was it. It was over. I was holding her hand, comforting her, but I don’t think I needed to. She had this profound faith in God. It was as though she had given herself over to him and that at that moment, he took her home. No fanfare, just a peaceful exit from these earthly bounds. I sat there until I was sure and then hurried in to wake dad. I just couldn’t leave her any sooner. We all were awake now and just crying and holding onto her and one another, knowing that the suffering she had felt was done. In all, she was home with us for one week. But she was where she wanted to be. Not in an institution, but home where she had always been happiest, surrounded by those who loved her.

The next few days were a blur. Transporting her to Macon for the funeral and subsequent burial. Figuring out what to do with dad, who was really in no shape to be on his own. Dealing with the outpouring from friends and family that ensued. It was a difficult time, but to this day I am so thankful that we took her home and made her transition to whatever is out there as smooth as possible.

Dad wound up selling the house in Macon and moving in with us for a few years after mom was gone. They had been together 43 years and he had lost his best friend and more. So we were now ready for the next chapter in our lives. We needed more space if dad was truly coming to live with us. The hunt was on for a bigger house and another move!

So here I was, out of work still very much a mess, seeking treatment for the unrelenting pain. I was prescribed Percocet for the pain and took them with gusto, once again, dulling but not alleviating the pain. Like all narcotics, the longer you use them, the more you need. So I once again had to endure withdrawal, alone, at home, doing it my way. After a period of time I was referred to a “Pain Management” specialist. This was a relatively new thing in medicine in the mid-80’s . Kansas City had one of the best groups in the country. After much evaluation, testing, etc a treatment plan was implemented. A TENS unit was prescribed along with PT and OT. The TENS unit was ultimately not very helpful. Nor was the therapy. I had been put on pretty much bed rest so I became progressively weaker which only exacerbated the problem. It was decided to pursue more and more invasive procedures to try and alleviate some of the pain, which had become chronic. First order of business was a series of epidural injections. These are done with a combination of steroids to treat the inflammation and a local anesthetic. I confess that I don’t know how many I really had! A bunch. None of them worked long term. They even tried Morphine epidurals which left me pain free for few hours, but always unable to pee for the same duration or more. A couple of times it was even necessary to catheterize me to empty my bladder.

After a time it was decided that a dorsal column stimulator would be tried. If you don’t know what that is, Google it! Anyhow, it involved placing an electrode into the spine and onto the nerve roots in order to block the transmission of pain impulses. Very simplistic explanation. The wire is then attached to a pulse generator which is placed under the skin (usually of the lower abdomen) and is used to adjust the amplitude and settings of the pulse. Well, for once, something worked. It worked amazingly well. For the first time in many months I was nearly pain free. It was as if I had been liberated! Unfortunately, my high was not about to last. One day a week or so after the implantation, I was lifting something and felt a pop. This was followed by a rush of blood down my belly. The incision where the generator was placed had ripped open and I was bleeding profusely. I called the doc’s office and headed to the ER. There he proceeded to sew me up and send me on my way. This was early in the week. Over Memorial Day weekend we made a trip to Troy to see my in-laws. On Sunday, I awoke to the feeling of dampness on my shirt. A dirty brown stain had formed over night and now a foul smelling ooze was emanating from the wound site. Upon arriving back in KC on Monday I called the doc on call and again headed to the ER. Of course the whole mess was now infected. So all of the hardware was removed and I was started on course of antibiotics to try and keep the infection out of my spinal column. It would be two months or more before it was possible to attempt another placement. And this time, the problems began to multiply. After several attempts, each time the lead migrating away from the position where it actually provided some benefit, it was decided to consult a Neurosurgeon in an effort to suture a lead in place during an open surgical procedure.

When the day of the consult came, I should have run. Ever have one of those feelings in your gut that tells you something is very wrong? Well, the doc was charming, witty, and seemed knowledgeable. A date was set for the surgery which would require several days hospitalization. The morning of the surgery, the doc came in to see me before the trip to the OR. Along with his nurse, he asked me an odd question. “Did Doctor “W” (the pain management doc, order the flat lead?). I told him I didn’t have a clue and he patten me on the arm and said he would see me inside. The surgery went well and in recovery they brought the equipment to activate the stimulator. Unfortunately I was so dopey that it would be the next morning before it could really be evaluated. The first day post-op came and Dr. “R’s” nurse came in to program the generator. She ramped up the setting and found that the stimulation was all on one side and mostly in one leg. They ordered an x-ray. The lead had migrated to one side, just like it did during the percutaneous attempts to place it. Finally I asked what the problem was. That suturing the lead in was supposed to alleviate this issue. Well, after some time, the surgeon and nurse confessed to me that the flat lead (the one they needed to suture in place) was not available in the OR nor had anyone procured one. So they proceeded with the old type lead which had largely been a huge failure in the past. I was pissed! They told me that they could have one the next day and that they would operate again to place the proper lead. Well, I had come this far and discretion being the better part of valor, lead me to a bad decision. I let them go ahead and operate. This time, after the induction phase of the anesthesia, after the requisite intubation, I awoke in the OR, on the table, tube in place, unable to move, unable to make a sound, but yet could hear and see. It was exquisitely frightening. It lasted all of 30 seconds but long enough to freak me out! Post-0p I was in so much pain I couldn’t stand it. Totally different than two days ago.Screaming in pain. The next morning, I realized my legs were numb. When I got out of bed for the first time, I was barely able to lift my legs to walk. The surgeon said it was from swelling secondary to the added operation. That in a few days to a week it would diminish and I would be good as new. WRONG! I was dismissed to home and could not lift my legs to step up on a curb. I had little feeling below the waist. This continued until my first post-0p visit a week later. At that time, the doc decided that something was terribly wrong (no shit) and that in order to facilitate some kind of recovery, the lead and stimulator should be removed (the next day) and we should put an end to this chapter in my treatment. So I went under the knife for the third time in three weeks. This time, I had immediate amelioration of symptoms post-op. I was not as good as new but much improved!! So something had been very wrong!! I went through a fairly normal post-op course and was off and running!

The next drama would involve a medical malpractice attorney. Can you guess why?? The next amazing installation of my life’s story is about to start!

I did digress a bit in the last post but will get back to the task at hand. I do plan to revisit some of the issues raised in a sort of retrospective fashion.

By now I had recovered from my back injury and was on with life. Still living in Kirksville, MO and working at the local medical center. It was time to get on with my education. I was in a dead-end job unless I got credentialed. One day a flier arrived from Creighton University in Omaha, NE. It spoke of a program (non-traditional) that in about 6 weeks would make one eligible to sit for the NBRC registry exam. There was no licensure in those days, the late 70’s. So a few of my coworkers and myself decided that we should do this. There were three others in my department who chose to go with me. The program was incredibly intense, 5 days a week, minimum of 40 hours a week. Testing every other day with lectures to fill the rest of the time. At the time the pass rate for the written registry in Respiratory Care was below 40%. When the time came, our class of 40 had 95% pass rate on the written exam. 100% of us passed the clinical simulation portion several months later.

So I returned to my job, now registry eligible but found little increase in salary. The handwriting was on the wall. Small town America was not the place to stay if you want to make progress. The opportunities were just not there. So Jeanell and I packed up and moved to Kansas City, MO. I took a job as Education Coordinator at NKC Hospital and she a job at St. Joseph’s Health Center on the O.B. floor. She was pregnant with Grant at the time so the move was stressful and we found ourselves going from a new mobile home to a small apartment in south Kansas City. It was close to her job but about 20 miles from mine. Life in the city was very different than we had been accustomed to. Coming from a town of 15,000 being in Kansas City was like living in an amusement park. There was so much to see, so much to do. We embraced life and awaited the birth of our first child. My health had been pretty stable. Other than the fact that while at NKC I contracted Hepatitis B from needle stick. That was a minor blip in the radar compared to what was to come. My joints had decompensated some, secondary to the fused knee. I was having left sided knee pain and right sided hip pain. Being on my feet 10 hours a day in a very demanding job didn’t help. The job at NKC sucked hugely. When I was hired they failed to tell me that I was also responsible for the night shift 3 days a week when the regular supervisor was off. I was working a shift that spanned from about 4AM to 3:15 PM. So I only worked 4 days a week but on most of those days was responsible for staffing the night shift in the event that someone called in sick. Normally what happened is that I would wind-up staffing the shift myself unless someone wanted the overtime. The man I worked for was a putz and the day supervisor was his puppet bitch! She was a woman who was divorced with a child and was the most bitter woman I think I have ever met. I truly believe she hated men in general.

After nearly a year a salesman, Rick, who I knew from my days in Kirksville, turned me onto a job, one that was the most amazing job of my life. Children’s Mercy Hospital was looking for someone for a new position, Clinical Coordinator. I had experience in peds and NICU but not the kind that would be needed to make this position work. Rick gave me the name of the department director and on my day off I gave him a call. His name was Bruce. He was new to the position and new to the area, recently moving from Idaho to assume the reigns of Children’s Mercy’s RT Department. We talked for a couple of hours. In fact I was home sick with pneumonia the day we talked. He wanted me to come for an interview ASAP. Several day later I was there! The HR person who interviewed me was nice but cool. After doing the requisite paperwork, Bruce came down and we went up to his office for a proper interview. But without my knowledge, the HR woman had called Bruce while I was waiting and told him that he shouldn’t hire me. That there was something very wrong with me, physically. He asked her what was wrong and she said that my gait was fucked-up and that I couldn’t do the job. Fortunately for me, he was a very independent person, made his own decisions and took little stock in other’s opinions. I was so sick the day I was there. I could barely breathe, had a high fever, but didn’t want to wait on the chance that the position would be filled. I interviewed with Bruce, the Medical Director of the department, who was also the chief of Anesthesia, and the infamous Dr. Hall who was the chief of the NICU. By the end of the day I was exhausted but hopeful. That evening, I got a call from HR telling me I had the job.

If I had thought my previous job was demanding, this one was light years more so. I hit the ground running with a “wish list” of things that I was to accomplish in short order. The department had been a mess before Bruce’s arrival. Marginal employees were hanging on and dragging down the whole operation. Within six months of of the two of us coming on board, all of the deadwood was gone. We had new people on staff, people who wanted to make it a great department and a great place to work.

One of my early tasks was to create an orientation program for new employees. Working in a dedicated pediatric facility is not like a smaller version of an adult hospital. The patients can be much more fragile and go from bad to worse in the blink of an eye. Our staff needed to be “pediatric specialists” not just therapists. Fortunately for me, after making a zillion phone calls to departments across the country, I found Denver Children’s. I flew to Denver for a few days to observe their operation, as well as their orientation process. When I left to return to KC I left with the entire contents of their orientation manual, along with their blessing to do with it as I wished. Bruce was ecstatic! I set about the task of tailoring the manual to CMH. A couple of months down the road we were ready for our first new employee, the test dummy to put through my new process.

One of the most fun things I did while at CMH, all the while nursing an increasingly wonky knee and crutch dependent a good part of the time, was to help overhaul our peds and neonatal transport system. When I first arrived there, the team consisted of a nurse, resident, driver, an ancient isolette for the NICU patients, a bag-mask resuscitator, and some oxygen. It was mostly scoop and run, ventilate, and hope! With the help of our biomedical department, the NICU staff, and our in house ambulance staff, we designed and built a transport isolette (all 350 pounds of it) complete with a ventilator, monitor, infusion pumps, etc. Since we didn’t have a dedicated aircraft for long distance transport, we found it necessary to rely on some of CMH’s benefactors for loan of aircraft. Locally we used ambulance or Life Flight for transport. Long distance was a tough nut to crack. It required a nurse, resident, RT staff and a ton of supplies since we were flying in civilian aircraft. For me, this was one of the most gratifying (and exciting) thing I did! I truly don’t remember how many trips I took but they were always white knuckle, balls to the wall adventures. Very sick kids and tons of adrenaline. I spent some crazy time with crazier ambulance drivers in rush hour traffic in some of the major cities of the Midwest. A few times, we all wondered if we would survive the trip! Not all of our patients survived, which was truly the hardest thing to deal with. Resuscitating a 500 gram infant in a moving ambulance was dicey at best.

Sidebar: Bruce was an alcoholic! Raging. It took me a while to realize it. We became fast friends and spent much time away from work together. We both loved cars and he sucked me into his world of drink. Even though I was a social drinker, I could hold my own with him, and in most cases, drink him under the table, based on the fact that my BSA was at least double his. There was a pub down the hill from the hospital where we went for lunch (non-alcoholic) and after work when we imbibed more than we should have. All of our social contact involved alcohol, which should have made me suspicious. I wasn’t, not until he hit bottom and nearly took me with him.

One event that just came back to me is somewhat shocking. But it was so long ago that I had put it out of my mind, never once thinking about it after it happened.

He and I went to Phoenix to the AARC National Meeting. It was in November, probably 1984 or there about. We landed at about 11 AM and the first stop we made was the liquor store. A 12 pack of beer later we had registered for the conference and were off to our hotel. Once there he produced a small package. In it was some brown, plantlike material, a couple of paper rolls (like the one’s from TP or paper towel, and some foil sheets. He fashioned a makeshift bong from the materials and proceeded to light it up and smoke the result. He told me that his brother, who lived in CA at the time was sending him Thai Stick. For the uninitiated, it is very high grade pot, soaked in opium to minimize any edginess from the pot, then dried and smoked. He offered me a hit. Now I had never tried pot nor any other form of illicit drugs. And I had never smoked, period. He was a smoker so I figured it was easier for him to enjoy it. Well his persistence was overwhelming. I finally caved and took a couple of hits. The effect was not that strange. I soon felt a buzz much like that from alcohol yet different. He continued to smoke off an on all evening but I decided that I needed to be in control and stayed away from this stuff. We drank all day and into the night and I was seriously beginning to feel it. That night, Bruce got on the phone and scratched up a couple of people from KC who he knew so that we could continue partying. One was an instructor from a local RT program who rotated students through our hospital. She and her roommate had their own supply of drug, cocaine, etc. This was starting to freak me out. We drove to their hotel around midnight to pick them up and one of the women was sick. So Bruce came home with one of them. Enroute, since I was driving the rental car, I relied on him to help me negotiate the streets of Phoenix. At some point we got hopelessly lost and stopped at a gas station for directions. I remember how hard it was to process information. How totally fucked-up I really was and didn’t quite realize it.

We made it back to our hotel and ordered pizza and had a few more beers. We ate the pizza and then Bruce and his “date” settled in for a night of passion (yes, with me right there in the next bed). Didn’t really matter because I proceeded to pass out in pretty short order. They spent the night doing what people do. In the morning, we drove her back to her hotel and proceeded to fly home, a day or two early.

This was a frightening chapter in my life. Here I was in a strange city, blitzed out of my mind on booze and DRIVING!! How screwed-up is that?? It would not be long before the whole alcohol issue came to a screeching, crashing head with Bruce.

It was the time of year when we were preparing for JCAH review. Lori, the assistant director and myself were the primary staff who did the review in preparation for the site visit. Bruce had begun coming to work later and later in the day, or not at all. One day we got a call that he would not be in for a bit. He had admitted himself to an inpatient treatment facility for drug and alcohol abuse, big surprise huh?? He spent 30 days in treatment and when he came back it was almost as if we were strangers. The fact was, that since he was gone, my alcohol consumption plummeted. But yet since he was out of treatment, it was if everyone who was from his past was a risk. He never did thank Lori and I for getting the department through the JCAH review. Never thanked us for keeping things running and doing our regular jobs at the same time.

In 1986, nearly 4 years after I had come to Children’s I suffered a back injury at home. I was about to go to work one day when I found myself on the floor, barely able to walk. The pain was incredible. This would be the beginning of the next chapter in my journey through chronic pain and addiction. It would ultimately be the end of my tenure at CMH. After being off for a couple of months, I was told that when my sick time ran out, which was considerable as I never took a sick day, so would I. Bruce came to see me one day to break the news. I was crushed. But I was also relieved in a way. I didn’t know it yet, but leaving CMH would bring about some changes that stuck in my life for a long time to come.