Ankylosing spondylitis is a form of degenerative arthritis. The immune system attacks a very specific target-the synovial membranes. These are structures that form little plastic baggies, holding a lens of fluid, in the disk of cartilage between two vertebrae. Nobody knows why the immune system does this. There are a few hints as to its origins though. Rheumatoid fever, a relatively rare condition nowadays, but formerly common, resulted when a particularly virulent strain of bacteria, Streptococcus sp., most often (the more I know about prokaryote taxonomy, the less I trust doctors to identify them, thanks Marianna), attacks the host and causes a severe fever. Later, after the bacterium is defeated, immunocytes press the attack and cause serious damage to the heart valves. The victim survives, but damage to heart valves makes it likely that, later in life, there will be heart attack issues.
Spirochetes, the cleverest and most beautiful of all bacteria, are masters at tricking vertebrate immune systems. Syphilis and Lyme disease are both, largely, autoimmune disorders. The later stages of both conditions, are similar in that the host continues to attack target tissue long after the parasite is gone. Both pathogens use proteins from the host to masquerade as host tissue, evading the immune system for years. The host finally recognizes the parasite, fights it to a standstill over the course of a multi-year progression, but an autoimmune catastrophe is imminent. The parasites have rendered it inevitable, they always find something in the host to use as a disguise, and the disguise works for a long time.
Lyme disease, for instance, can induce MS like symptoms in an adult, by provoking the host to attack the mylein sheaths that surround the long axxons in the central nervous system. The resulting inflammation can produce astoundingly MS like symptoms, including the optic neuralgia, a difficulty in moving the eyeball, resulting from an inflamed optic nerve.
With MS, rheumatoid arthritis, and Crohns disease, the pathogen is a mystery. It is possible that the body does not even need an excuse to attack its own tissue. With MS, it is mylein, with Crohn's, it is the intestinal lining, with rheumatoid arthritis, it is the joints. Certain genotypes are, most likely, more susceptible to these disorders. For instance, people who bought Crohn's are also likely to put AS in their shopping cart. This is why I call my guitar teacher, "my clone", he looks like a miniature version of me because he has a conspicuous posture indicative of AS, but Crohn's is the big deal with him right now.
Like most people with AS, or MS for that matter, I had the illness for years before I realized what it was. As a senior in high school, I remember having such severe hip problems that, sitting up from a desk, the hip would slide right out of its socket and need re-adjusting. This was painful, but I accepted it as an inevitable fact of nerd life. Of course I had a weird hip. It suited my bookish, non-athletic personality. The symptoms persisted in college, and, by the time I hit grad school, my wife was shopping for just the right cane for me. She liked the idea of me with a suitable cane. I went to an orthopedist at UCLA once, but they found nothing. They were looking at my hips. The problem was that the disks in my lower back were under attack by my immune system, sending shooting pains down my leg and causing secondary issues there.
This thing with my hip came and went, and the major upshot from it is that I rarely jaywalk. For many years, I was simply unable to run, under any circumstances. This can be a major liability crossing a street against the light. I developed ideas about how it is wrong to disrupt the public order by crossing illegally, and how it is selfish to endanger ones self in such a way. In fact, my autoimmune disorder was already affecting my relationship with society. I began to feel increased empathy with the infirm, the elderly, and anyone else who, in a hunter-gatherer society, would be doomed.
The hip thing used to come and go, finally, it went. In its wake, it left a weird posture. I accepted this. I was happy to be free of the pain. Other back pain ensued, however, higher in my back. Funny, this whole time, I never went to the doctor. I had no health insurance, and I figured there was nothing they could do for me. This was, in fact, true. I was actually in much better shape, because when the hip infirmity left, I was able to run, work out, and go for ten mile walks regularly. Walking and pushups had always been my exercise regime, and I was in much better shape at 30 than I had ever been in high school. By 30, however, everyone was telling me something was wrong with my back and I needed to get it checked out. As the disease worked its way up my spine, I developed a serious potato-chip curvature. Kyphosis. It used to come and go diurnally. I would wake up relatively tall, and as the inflammation progressed, I would shrink and double over. I discovered Aleve for the first time near my 30th birthday, got drunk that night, and nearly poisoned myself. Drinking and Aleve do not mix.
It was my mother in law that finally insisted I go to the doctor. I remember walking into the clinic, in a vintage building at UIC, and sitting there, telling my symptoms to a medical student. He was an orthopedics student, and a weird sort of light lit up in his eyes. He had me do that teapot stretch, and, for the first time, I realized that I could not do it. I overcompensated by bending my knees to simulate the same result. For years, I had been overcompensating for a lack of mobility in my spine, and I had truly not realized what had happened to me. Student one asks me a whole lot of questions, and then I wait. In walks Dr. Dickhead, and students two through five. Dr. R is in his late fifties or early sixties, is obviously important, and has summoned all these students because it was a rare moment of diagnosis. Cases of AS do not come up every day, it had obviously been talked up as a horrible disease, and he was seizing upon this exact moment to show his underlings how to deliver the crushing prognosis.
He tells me, rhetorically, to a television audience that did not exist, to stop whatever sports or athletic activities I was doing. Whatever they are, they are all too dangerous. When I mention that I have absolutely none, he asks me what, exactly, I DID DO. I told him I sat around in coffee shops, reading, and writing bad poetry. He asked how this affected my back. I told him that I hate straight-backed chairs. These, he told me to avoid.
He went back to his TV audience, dismissing the notion that there was any "magic pill" or surgery he could do to make my back better. I do not recall asking for such a pill. Nor surgery. In fact, I had avoided going to the doctor for years out of virtual certainty that this would be the outcome. There was nothing they could do, they would charge me for telling me that, and they would schedule many extra appointments in the wake of my diagnosis, mostly for the purpose of monitoring my condition as a case study.
He told me, that, by 40, 45 at the latest, I would have no motion whatsoever in my back, and literally would not be able to look to the left or the right. A fixed stare, forward. Most likely, my spine would be contorted into a grotesque shape, possibly facing the floor or permanently to the side. I would be grossly disfigured, soon, and I should get used to this.
Oddly enough, I kind of liked the notion of being disfigured. I wanted to be disfigured in an interesting way though, not a goofy and stupid way. All of this, I kept to myself. Dr. Dickhead kept up his condescending, tough talk, for the sake of his students. I remember gasps, and statements like "I don't know what it would be like to be diagnosed with AS, I don't know how I would deal with it." I dealt with it by walking out of the exam room and throwing all the paperwork for the follow-up appointments in the trash. I kept the card for the physical therapist, though. He was awesome. I saw him once. He gave me some exercises. I realized that as long as my spine moved, it did not matter what exercises I did.
I spent a lot of time on Google and realized something. The Dr. Dickhead gave me a very dated prognosis, as did my physical therapist. Most cases of AS do not proceed to head-to-toe "bamboo spine", though some do. The trick is to keep the spine active. In Victorian times, they used to treat MS by corseting. If you stick a person in the right corset, you can keep their spine straight, and as the disease progresses, at least they will not be contorted into a pretzel. It is very sad that I missed my opportunity to wear a corset under my clothes. In the earlier stages of my illness, I used to crave one. A black one, velvet, ribbed. I would lace myself into it, somehow, and be sexy AND tall at the end of the day.
Corsets on men do nothing for my wife, however, but she likes freaks.
It turns out that corseting is the exact opposite of what to do for the illness, and I started stretching every day. This proved to be most unsatisfying. I got nowhere. Stretching cold, without working out, does nothing for me. I started working out, THEN stretching, and developed a routine. I still have it.
I can list about a hundred psychological effects the illness has provoked in me. The majority are positive, some are negative. It made insecure about my attractiveness to women. Being deformed does that. To this day, I don't think my wife has put the two together. The ensuing search for masculine charisma has led me to find the best friends I will ever have, one after the other, in the women from whom I have sought a validation of my sexual charisma. They have all, every one of them, figured out my motivation and accepted it. We all have our pecadillos. It certainly taught me to endure discomfort. This is typical of AS cases. They are generally diagnosed late in their illness, and have grown so used to discomfort, that they can tolerate anything. Most become masters at overcompensating.
Yoga was the most humiliating experience I can recall. It taught me humility, and empathy for every student in my classes who simply cannot learn what I try to teach them.
I smoke a lot and drink rarely. For years, I took so much Aleve, Tylenol, aspirin, that adding booze to the mix was a recipe for organ failure. I do not like the feeling of a good alcohol buzz anymore, even though the illness is waning and I have not taken a painkiller for days.
I think of my old age as in my sixties, not my eighties or nineties. The illness has probably shortened my lifespan and I have gotten used to that. No problem. This has provoked a massive, existential reworking of my everyday life, and a much greater appreciation for each passing moment. I live so much more deeply, richly, and dangerously now than I did when I was 21.
The pain, and the routine, have taught me discipline. I can discipline myself to do almost anything. The limited resource now is time.
On the other hand, I will never go rock climbing. I will never scuba. I should avoid carnival rides. I should never box or do martial arts. I really should not ride a bike in the city, though I do all the time. I should be terrified of traffic accidents. I am. I have a friend, an old friend I never see anymore, who does not know how much he damaged his friendship with me by continuing to drive the way he does, despite my entreaties not to take our well-being into our hands. We all have our pecadillos.
Fuck scuba. A decent walk in the woods is just as profound, and it is convenient that most of my research involves organisms that work at eye level, above water.
The pain, the constant soreness and discomfort, that became a baseline for me, has waned to the point that I do not remember it. It used to be so severe that its absence, which would only occur in those brief moments after renewing my prescription to Celebrex after a long hiatus, would make me feel high like an opium addict.
About the time I was diagnosed, they developed incredible meds, with equally incredible side-effects, to treat my illness. Ten years later, the side effects are less acute, and the meds can be used to treat other autoimmune diseases. My Clone finally has a handle on his Crohn's. The meds will, most likely, stop it in his tracks before the terrible prognoses set in, the weird fistulas through the abdominal wall, etc.
I hear there are good meds for MS now too, if taken early, they stop the disease in its tracks...before it progresses to the point that the nerve damage sticks a little every time the disease recedes.
I am not exactly regretful that I never took the meds. They arrived too late to help me. I needed them in 1992, not 2002. I have made my own strange peace with the disease.
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