The 1980s were a decade of pain. It was a momentous decade for me including:
- a marriage
- the birth of a child
- a divorce
- another marriage
While lots happened –joyfully and painfully– on the outside, my biggest drama was going on under the surface, playing out in my body. I suppose it had started long before, but really hit its stride in 1979, when I lost my stride, literally. I developed a chronic limp for awhile, intense pain whose cause was a mystery to the several doctors I visited.
Yeah, you can imagine the conversations. While I was offered all sorts of wonderful opportunities to be injected with cortisone directly into both heels –a spectacular sensation not to be missed, especially when the cure is to an unknown disease, one who wasn’t terribly impressed with the medicine—the symptoms were problematic. Doctors can be fabulous conversationalists, particularly friendly when stumped.
1979 was the year of my break-down, when I couldn’t walk and didn’t know why. I lost a job and suffered further ignominy via bureaucracy (a memory I’d suppressed until just now…), trying to explain and justify it to the worker’s compensation people.
But one must decide where to line up, as it were. Certain key questions identify you. “Did you develop this on the job?” I sure noticed it there, unable to take a step without agony. And so if it’s worker related, that’s one thing. But a chronic (genetic?) ailment isn’t really something you picked up on the job. I stopped asking when I realized that I was as confused as the doctors.
I stumbled (literally?) upon a solution quite by accident. I went through a period of drunken life, depressed, upset and puzzled. I avoided the rock bottom of those who are not blessed & protected as I was and am. I moved in with family, rescued for a time, while I stopped all the bad things I’d been doing:
- no alcohol (although I would later resume moderate drinking)
- no smoking (this would lapse, but I’d eventually stop for good by the end of the decade)
- no food excesses (sugar, salt, major carbs): as I accidentally stumbled upon a cleansing diet
My symptoms stopped. Wow, I had no idea why. But I was able to resume life, doing all the momentous things I mentioned above. My doctor for most of this decade gave me the usual lecture, looking at my posture and concluding that I slouch, said with the usual pejorative associations. Good posture and physical fitness seemed to associate with happy healthy people, while those of us whose shoulders & necks sloped forward? Perhaps not so diligent, not so happy nor so healthy.
When the more intense symptoms reared their collective head (if you’ll excuse the contradiction…. Rearing my head is getting harder all the time) at the end of the decade, I was more fortunate in my experience with the medical system, even though i still had that doctor who seemed intent on blaming me, perhaps because she didn’t like admitting that she didn’t know the cause of my symptoms.
Ha, it’s a brave person who can say “i don’ t know.” I recall being moved by the way Northrop Frye said it in response to a question in a class at university. This was a real mensch, someone who knew so much and so could say “i don’t know” without surrendering his competence.
Then I got an amazing gift. My wife surprised me with a book about backs by a British doctor –and I am so sorry I can’t recall the author, arguably the single best book I ever read in my life. I read about some new possibilities. The book included a fascinating self-diagnosis flow-chart, whereby you plug in your symptoms to get a possible diagnosis.
Suddenly I saw a possibility, an explanation. I had to live through the cognitive dissonance with my current doctor, who responded by shouting “who’s the doctor here”? Imagine my nerve, challenging her wisdom, her hegemony, her diagnosis of bad posture? She insisted I continue to see the specialist at a downtown hospital, follow the pathway in a book by a Canadian (ha, imposed Can-con!), and the program of exercise.
I remember standing in that hospital with the radiologist as we looked at the X-ray together, the wedge shaped vertebrae in my upper back. I said to him “isn’t that exactly what ankylosing spondylitis (or “AS” as I know sometimes call it) looks like?” …because of course that’s what I’d read about in the British book, the possible diagnosis that gave me new hope. Maybe I wasn’t just a lazy malingerer, faking symptoms and expending healthcare dollars needlessly. He mumbled something in reply, more or less taking the party line with the doctor who needed to remind me who was the doctor.
While she was on vacation, my wife –bless her—got a referral from that doctor’s secretary to see a new specialist suggested by a friend of a friend. There’s no way this would have flown when the Fuhrer was in town. But even Nazis sometimes take vacations.
His name is Charles Bull. I recall being able for awhile to say “he’s Wayne Gretzky’s doctor, Hulk Hogan’s doctor, and Leslie Barcza’s doctor”. And he gave me back my dignity, something that had more or less been stolen by the implications of a decade of shame. It’s funny, but when I asked him about the possibility of AS– but oh so humbly and cautiously for fear of being told to stand down, admonished “who’s the doctor here!” — he just smiled and said yes I looked very much like someone who could have the disease.
Of course he’d have to confirm it with the blood-test, for something called “HLA-B27”. The test was so uncommon they had to ship my sample off to Guelph, but Dr Bull wasn’t in much doubt, having seen my X-ray. And yes the blood test came back positive. Apparently Hungarians are especially likely to get this disease, having the highest incidence (19% I think I recall him saying) of positive tests for HLA-B27. I would later hear that the slouchy posture of AS is decoded differently in Hungary, that such a body shape is seen as “distinguished”. That made me stand a little taller.
Two prescriptions immediately changed my life.
1) The first was for medications. I entered the world of NSAIDs, meaning stronger versions of the same drug class that includes Aspirin and Tylenol. I had been waking up with pain in my tailbone area, sometimes with pain in my heels, as well as other assorted flares of hurt.
2) The second? I recall Dr Bull telling me that we needed to build a layer of muscle to protect me. And so I was sent to a gym where I was taught rehab exercises.
And Dr Bull sent me to the first of the rheumatologists I’d go to, who would monitor the progression of this disease. It’s not a killer, just a chronic condition that –when I looked at the pictures of slouching deformed sufferers—scared the crap out of me. When you see such prospects, you take your medication & you exercise, motivated by what lies unavoidably ahead.
That was 1989.
The decade closed with a new hope, a sense of beginning again. My pain faded into a dull cloud, a new buzz –from the meds—that replaced years of soreness. It felt like a miracle, a new beginning. Life began anew after a curious delay. After wandering through the 80s, confused and sore, I could stop feeling blamed and ashamed (as some doctors had left me feeling), because maybe it wasn’t my fault after all.
I’m looking back as I come up to another birthday, a full quarter of a century since the diagnosis (quite a bit longer when i include that period of frustrated inaction). I wrote a bit about AS awhile ago, the discovery that has allowed me to lower my doses of NSAIDs to almost nothing: by looking at the roots of AS in dietary choices. My experience shows me that I don’t need the big pharmaceutical guns, not when they carry so many risks.
One has to decide one’s pathology ultimately, between choices that aren’t always clear. Reduce pain (NSAIDs) but maybe fry some internal organs? Or stop the disease cold, but develop something really nasty due to the overpowering drug you’re taking (i said no to the doctor who wanted me to take Enbrel after hearing the risks she quoted)?
Or stop eating certain foods and –wow—reduce meds to almost nothing.
Just so long as I keep exercising & eat right. For me that’s the magic bullet. It’s counter-intuitive, but my body has taught me that sitting still or resting as a response to pain is a colossal mistake. I’ve had to develop a more mature relationship with pain, which is to say, understanding the messages from my body that tell me how far I can go, how much stretch or exertion I can handle, and sometimes, what i can’t eat (when i get too cocky and resume eating starches). Because of course it’s always been activity, not medication, that has been my chief guarantor of physical and mental health. While I hardly take any pills anymore, the real prescription was that second item. My real meds are the stair-master, the weight machine, stretching, walking,…. Sometimes I get too busy and forget for awhile. Thankfully, my body never lets me forget.
So long as I remember to listen to what pain is telling me? so far so good.