Author: Cornish, Rick

How I Didn’t Spend My Summer

I DIDN’T spend my summer playing the fiddle. At the Fathers Day Festival we had our annual Welcome Writers jam at my campsite after the main stage show ended on Thursday night. I’d been pretty sick wen I arrived on Sunday and just seemed to get worse all week. By Wednesday I knew I’d have to leave Grass Valley early and miss the festival for the first time in 35 years, but I was bound and determined to host our little writers get together. We had a good turn out and played for a couple of hours. I hung in till most of the folks left my camp, then went to bed and early the next morning my wife Lynn drove me home to Jamestown. (Thanks to my very, very good friends for breaking down my campsite and dealing with my trailer, etc.)

The mystery illness caused very, very painful ‘attacks’ to my joints and muscles each day, at varied times and durations and in varied spots around my body (e.g., left ankle, right knee, right shoulder one day…..right toes, right stomach muscles, left neck the next….completely random), along with severe flu-like symptoms, severe fatigue and loss of appetite. But the one symptom that remained 24/7 was nasty pain, swelling and inflammation in both wrists and fingers. That never went away and, hence, no fiddle playing at all. Case closed….literally.

No festivals, no jams, no solitary woodshedding all summer. Well, actually, once, in mid-August, I got myself to the Smoke Jam but only lasted 20 minutes and had to go home. But that was it. Except for those brief few tunes played at the Smoke that Friday night, no fiddling at all.

I picked up the violin 22 years ago and, in the beginning, I played four or five hours each and every day, absolutely determined that, no matter how long it took, I would learn to play. And eventually I did, (some would argue that, I know) and from 1989 till this past summer I never, ever went more than a few days without pulling my fiddle out and striking up a tune. So, with everything else that made the summer of 2011 miserable, there I was, with huge time on my hands and completely unable to play.

Beginning the second week in June, my docs were absolutely certain that the cause of my daily attacks was a statin drug I was taking and so, of course, I stopped taking it and we waited for me to start feeling better. But that just didn’t happen. June, July, August and into September we waited. I didn’t get any worse, but I didn’t get any better either. Pretty much I just isolated, read like crazy and went into my customary fetal position when my attack came each day. Saw no friends, left the house only to keep doctors appointments. The first week in September my doctor called and asked that Lynn and I come in to meet with her and one of the rheumatologists on the team. Turns out they brought us in to begin breaking the news that I actually had lupus….incurable, progressive and, ultimately, deadly. They didn’t say it outright; rather, they brought it up as a possibility, just one of the explanations for what was happening to me. But Lynn and I knew what was up. Our worst fears were being realized.

Then, just two days later, Dr. Tily, my head rheumatologist, called me at home late one night. She was excited, talking a mile a minute, breathless almost. The jist of the call was that she was nearly certain she’d discovered what was going on with my body, and of all places, she’d found it on the Internet….a research paper that had been published in the New England Journal of Medicine and then posted on the web. It was ‘Drug-induced Lupus’; a syndrome that worked the opposite of AIDS—instead of shutting down the auto-immune system, lupus mistakenly fires it up, pulling out all the stops and causing massive inflammation. She read a list of seven symptoms, we checked each of them off. I had them all. She read the different drugs that could cause the syndrome. I’d been taking one of them for a year and a half. “STOP THE HYDRALAZINE” Dr. Tily said.

Five days later I started feeling better…within two weeks I was feeling a lot better. Still had joint pain in my hands, but it was definitely becoming less and less severe. By early October, I was feeling almost like my old self again. But I didn’t open the fiddle case. I started to more than once, but each time I decided to give myself a little more time. What was I waiting for? The pain in my fingers was nearly gone. Still I put it off. The fact is, I was scared.

On Wednesday of CBA Camp Out week I loaded my stuff into the truck, including my fiddle, and headed for Colusa. Still hadn’t tried playing. After checking into my motel I drove the one mile over to the fairgrounds, parked in the shade and immediately found a nice little jam. I was nervous; I realized my hands were shaking. I honestly didn’t know what to expect. Oh no, the first song was a quick version of Cherokee Shuffle. When it was my turn I stumbled on the first line, tripped on the second, missed an entire phrase on the third and pretty much had a car crash on the fourth. But, low-and-behold, when it came around a second time I got through all four lines, all be them haltingly, with only a couple little mistakes. I was back, and boy oh boy oh boy did it feel good. By the time I walked away from my last jam on Saturday night, well… was like that entire dark summer had just faded away.

It’s true that, from mid-April at the Turlock Camp Out when I first began to notice the effects of D-I Lupus until the Fall Camp Out in Colusa when it had become clear that my life would, in fact, return to normal, I missed all of the festivals and jams and good times, and I surely did miss my bluegrass friends. But what I missed the most, music-wise at least, was being able to pick up my old friend and make some music with her.

Let me add a footnote here. I recently read that in the past twenty years the incidence of drug-induced disease has increased thirty fold here in the United States. We have great reason to be thankful for the new drugs and technology that increase the number of years of living we have to look forward to. But increasingly, we have even greater reason to look carefully with our docs at what we’re being prescribed. My rheumatologist said it best the day we met…..’We doctors will kill you if you let us.’

Posted:  10/30/2011

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