(This is a pretty long read, but for those who are interested in how all of this started and where things stand today, here is a decent summary of the past 22 years...)
In the later summer of 2003, I was living in northeastern Wisconsin and preparing for another school year of teaching physics and astronomy at the local public high school. It was my sixth year of teaching and the year had started strong for me as the new head coach for the boys varsity soccer team. Despite coaching I continued taking graduate education classes myself. A full-time teacher, part-time coach, and part-time student left little room for my family of four at that time, but we made it work. Everything changed pretty quickly following a date I remember quite well.
On October 11th, I was spending my night in a hotel room as part of a weekend excursion for NASA studying the growth of plants in various extraterrestrial environments. It was a long week of school and soccer followed by a Friday night of studies of my own. It did not really phase me that I slept horribly that night as I often did when I was away from home and my family. However, even after arriving home on Saturday, I continued to have sleeping issues—waking up every 30-60 minutes all throughout the night. That first night grew into three months of consecutive nights just like the first.
By the time the new year rolled around, I was seeing sleep specialists and starting to suffer problems with my vision and exposure to light from the lack of solid sleep. The doctors were as perplexed as anyone when another interesting symptom was suddenly added to the list: I was having trouble swallowing. The doctors thought that my sleep issues might be connected to a weird series of spasms and pain I was experiencing in my esophagus. I hadn’t reported any discomfort because I didn’t feel bothered by it that much, but they believed that it could be enough to force my brain to awaken me throughout the night.
They proposed a procedure to stretch out my esophagus—a fairly routine thing called esophageal dilation involving a long, thin balloon and a blast of compressed air. The timing of all this was such that I needed to schedule it for early morning, before heading off to school to administer a final exam to my physics students. Although it is uncommon to do this procedure without general sedation, my decision to be alert during the procedure may have ultimately saved me months of frustration trying to figure out what came next and why. During the procedure I felt the process inside. I felt every detail of the tube being inserted and the balloon being inflated inside me. The doctor noticed my reaction and remarked how unusual it was for anyone to feel anything inside the esophagus.
The rest of the day following the esophageal dilation was better than normal. I felt pretty good overall and that night, I went to bed early and slept through the night without waking up at all. I seemed like my problems were all solved except for one little thing. When I did wake up the next morning and went into school, my chest hurt. It was a different kind of pain from the discomfort of my swallowing difficulties. This pain was right in the area of where the balloon stretched my esophagus out. The doctor who did the procedure was concerned that the balloon might have torn a in my esophagus and ordered another procedure to look inside and see the damage.
That procedure revealed no noticeable damage at all, but now a full week following the original dilation, I was experiencing chest pain significant enough to warrant staying home from work and taking a daily regimen of hydrocodone (aka Vicodin). After a month of ever increasing levels of pain and higher and higher doses of hydrocodone, my local doctor had reached a point where he had to admit to not understanding the problem and immediately recommended me to two specialists—one in the field of gastroenterology and one in pain management at the nearest research hospital. I was fortunate to have doctors so well qualified working in the city of Milwaukee, a mere 105 minutes away from where I lived and worked at that time. Although an official diagnosis is still technically forthcoming, from the very beginning, my condition can only be described as a unique variant of Complex Regional Pain Syndrome (CRPS). This condition includes two main distinguishing features: allodynia (an abnormal reaction where normal stimuli is interpreted by the nerves as pain, and hyperalgesia where pain is perceived by nerves to be significantly worse than would be expected for the situation. Where my particular condition differs from those with a more typical diagnosis is in its uncommon location (because CRPS typically affects a limb and can migrate and/or spread) and duration (CRPS typically goes into remission).
As the pain worsened, I was eventually in a position of requiring a full regimen of very potent opioid medication just to endure through a day, but I felt at least like the doctors were making some progress. Unfortunately, the effectiveness of the medication at reducing my pain was accompanied by side-effects that were impacting my ability to teach at the high levels and high standards to which my students had become accustomed. Over time, I really began to wonder whether I would be able to even continue teaching or not, so my doctors and I met together to discuss how I could get "my brain" back again. Fortunately, my doctors are not only caring individuals genuinely dedicated to helping others, but are among the top experts in fields connected to my particular conditions/symptoms.
The first major step was to receive a spinal cord stimulator which, if it worked, would have a numbing effect on my pain by using electric current to trick my nerves (term: parasthesia). The surgery to implant a neurostimulator with wire terminals in the location where I need them is quite uncommon. Many with similar conditions are affected by pain in a hand or arm or perhaps a foot or leg. Because my pain in in my chest, the nerve bundle responsible for my respiration and my blood circulation is in the same area. Any act to interfere with my malfunctioning nerves could impact my ability to breathe or the function of my heart.
We used a top-notch neurosurgeon for the over-four-hours of surgery during which I was required to be awake and lucid so that I could give them an accurate reflection of where I was feeling the electric current when it was turned on. I was fortunate, however, in that one of my former students was among the surgical staff as a nurse and so had a genuine friend there to support me during that time. The surgery was a success and within a month (following recovery time) I was almost “active” again.
Unfortunately, the neurostimulator only bought me some time, and several months following the surgery, just as another Wisconsin winter was upon us, I was back on a fairly full regimen of the medications I had been hoping to entirely avoid. I managed to muddle through the remainder of that school year, but my new goal became to experiment with different pain-relieving medications to see if it was even possible to get relief (in combination with my neurostimulator) that would not also include all the negative side effects.
My doctors next tried me on a medication called Buprenorphine. This medication is the new go-to medication to help those trying to recover from addiction to heroin and other opioids. The drug itself is thirty times more potent than morphine, but the mechanism by which is works is quite unique compared with the vast majority of other opioid medications. I’m really simplifying this, but in a nutshell, most opioids function by both blocking pain receptacles (thus preventing them from activating naturally) and filling pleasure receptacles (thus making it potentially addictive when there is no source of pain). Buprenorphine is a selective opioid that effectively helps to block pain without providing the same kind of euphoric sensations in the absence of pain. For me, the addiction factor is basically a nonissue because I have never yet experienced a moment since this all started when I have not been in constant terrible pain. That said, the Buprenorphine is something of a wonder drug because it dulls the pain without impairing my judgment or altering my personality at all. Maybe it doesn’t dull the pain as much as traditional opioids and I’m completely drained at the end of a work day, but it is worth the trade-off of the extra pain to keep my wits …and my job.
Honestly, it is an interesting burden to bear. Having been exceptionally healthy for 33 years of my life, the fairly sudden downturn to being totally disabled is something to which I have not yet fully adjusted. Without the use of my neurostimulator and the Buprenorphine, I would easily qualify for full disability and would be completely bedridden. Even with the medication and electrical implant, I am in moderate pain all of the time and have to concentrate to fight the pain while distracting myself with various things to get through the day. The sensation that best describes it, at least if it were possible, my mind is telling me that someone is pushing a railroad spike through my chest. That’s the constant pain, and when I swallow, it’s worse. Every time I swallow—solid or liquid—there is a brief moment of excruciating pain; my brain conjures up images of a blowtorch or a box cutter going down my esophagus as if that were even possible.
Despite the temptation of giving up and going down a path which would take away my pain more effectively and eliminate the burden of having to work to provide for my family, I firmly believe that my family and I are far better off with this version of "me." Yes, I am in more pain and am often irritable and short-tempered. However, I know that there are many moments when I am able to genuinely enjoy the company of my family and they can enjoy mine. I am happy that my efforts to endure more pain give me the ability to earn a respectable income that allows my family to enjoy some added comforts in life that would not be possible with an income based exclusively on government disability pay. I would also like to believe--and there are numerous accounts from former students of mine to support this notion--that I am providing an invaluable service in the various roles I serve for my students at school. I continue to serve as a high school teacher and in all honesty, it's my focusing on helping others that distracted me from my own problems.
It is my hope that ongoing Providence, my own faith and will power, the power of others' prayers, the value of others' generosity, and a little bit of luck will continue to provide me the opportunity to serve as I am and provide for my family as I do. Who knows? Perhaps someday, a discussion involving a possible cure will not be that absurd.