I am a Trex-head. It’s Monday, and I’m feelin’ it. It’s also keeping me alive, though, so I probably shouldn’t complain.
Three and a half years ago, I was hospitalized with what turned out to be an incurable muscular degenerative auto-immune disease called polymyositis. Good doctors and good meds saved my life. But I had to take early medical retirement from a job I loved, teaching at BYU, and I’m probably never going to get all that much better. It’s very difficult for me to climb stairs, or get out of chairs, or walk any distance. That’s in addition to feeling rotten all the time. So it’s not much fun.
When I first got it, it wasn’t easy to explain to people. For one thing, the name’s a mouthful: polymyositis. Polywhatsitwhosis. Polywhojamaflopper. Since it’s a muscular degenerative thing, it’s a little like Lou Gehrig’s disease, which Stephen Hawking also has. That one’s also a mouthful–amyotrophic lateral sclerosis–but explaining it’s easy; you can say ‘well, Lou Gehrig’s, that thing Stephen Hawking has’ and they get it. But I don’t actually have Lou Gehrig’s disease.
We have Ricky Bell as our poster boy. Ricky Bell died of dermatomyositis, which is a close cousin to my disease. Dermatomyositis is polymyositis with a nasty skin rash. So I sometimes tell people I have ‘Ricky Bell’s disease.’ Ricky Bell was a running back for USC and the Tampa Bay Buccaneers. If you’re a huge football fan, you’ve maybe heard of him. Also if you’re a fan of obscure made-for-TV movies. His was called A Triumph of the Heart, and starred Mario Van Peebles. But see, there’s the problem, right there. Lou Gehrig got Pride of the Yankees, where he got to be played by Gary Cooper. I got Ricky Bell and Mario Van Peebles. Dying tragically of something that’s not even exactly the same disease.
Explaining it to people is tough, but it got easier thanks to Sports Illustrated magazine. In February, SI did a story called Man in Full, about a high school wrestling coach named Mike Powell who has polymyositis. It was a terrific story, and in it, Powell describes the disease perfectly, best description ever. He says it’s like having the worse flu of your life all the time. That’s it, that’s exactly right. When people ask me how I’m doing, I say, “ah, you know, good days, bad days.” But that’s just faux bravery. You don’t have good days. You have lousy days, and incredibly rotten days. You either feel crummy, or you feel absolutely like death warmed over.
As the Mike Powell story says, polymyositis kills about 50 percent of the people who get it. That’s mostly because it’s hard to diagnose–if they can figure out what it is, it can be treated successfully. I got incredibly lucky there, really smart docs who caught it quickly. My time in the hospital was really comical, at first. They’d do all these tests, and every day they’d come in and go “well, it’s not Lou Gehrig’s. Hey, it’s not cancer! Okay, you don’t have AIDS.” When after just four days they went, “polymyositis. We’re sure. That’s what you have,” it was a tremendous relief. And they were able to get me in to see the amazing doctors at the U of U Rheumatologist’s clinic, and they saved my sorry behind. My disease is currently in remission, which means it’s not inflammatory, it’s not getting worse. It’s never going to get much better, but not getting worse, that’s a positive.
After the first year, the main cause of death is suicide. You just get so tired of feeling crummy. Sick and tired of being sick and tired. And trex days are the worst.
One treatment is a weekly dosage of methotrexate. Trex. I am a trex-head.
Trex is toxic. Basically, it’s chemo-therapy. It’s used to treat certain cancers, though my dosage is a lot less than cancer patients get. It also causes abortions; nasty stuff. I take it every Sunday night. Side effects include dizziness, drowsiness, general body discomfort, headache, loss of appetite, mild hair loss, mild sore throat; mild nausea, tiredness. That’s from a trex website. I haven’t actually experienced the mild hair loss; what happens instead is that I don’t have to cut my hair very often. I haven’t lost my hair, but I went eight months without cutting it, and it didn’t grow at all. It’s now started growing again, and that’s actually a relief. The not-growing thing was just weird.
But basically, every Sunday night I take these pills, which kick in pretty quickly, and which lead to twelve to fourteen hours very disturbed sleep, and then a completely rotten Monday.
And today was a bad one. I had a deadline, a play I’ve been working on which my producer wanted to see a draft of. I got it to him, but asked if I could have an extension til Friday to get it right, which he was nice enough to agree to. It’s not that what I wrote was bad. It’s that I have no idea. I feel so crummy, I’m not objective.
But, you know, I’m so incredibly lucky. Every previous era in human history, they wouldn’t have had any idea. They’d say I had the ‘ague’ or something. They’d say I had an excess of black bile, and bleed me. That’s if I was rich enough to afford a useless doctor; mostly, I’d just die. I got state-of-the-art medical care from terrific doctors. I have this amazing med, trex, which is keeping me alive, while also helping me really deeply appreciate how comparatively great I feel the six days of the week when I’m not recovering from it. I have a family who I love and who loves me, four amazing kids and a wonderful wife. And my daughter’s friend just brought me ice cream. And I’m cooking hash browns for dinner, and to heck with healthy eating. I’m on the hash browns and bacon diet today, because it’s a trex day and I feel like eating something bad for me. It can’t be worse than trex, a toxic poison which I thank God for, ’cause it’s keeping me alive. I have the flu every day, and I’m grateful. Life is . . . what it is. Life. And tomorrow will be better.