I hate that word. It’s so final, so deadpan, and so totally hopeless. When I hear or read it my first reaction is to turn away, shut down, and give up. Why fight something that’s not fightable? And yet because I’m an optimist (also incurable), I try to ignore that ugly word and move on.
But I’m also realistic. The fact is that so far, there’s no cure for rheumatoid disease. We simply don’t understand it well enough, though the scientists are working hard to puzzle it out. Even so, we’ve learned volumes about this frustrating autoimmune disease since the turn of the millennium. They’ve developed a double-handful of amazing new drugs that have the power to work miracles, drugs that have transformed the lives of many people. And over the next 20 years or so, maybe medical science will finally discover a cure.
In the meantime, though, we have to face up to the “I” word. We can do it with hope, with sisu*, or we can do it with a sense of defeat. I prefer the former.
I was skimming “Planet of the Blind” recently, a blog authored by Steven Kuusisto. Blind since birth, he’s a writer, poet, and university professor who speaks widely on diversity, disability, education, and public policy. He writes about the natural world with amazingly descriptive clarity. One of Kuusisto’s posts, “On Being Well,” got my riveted attention. It was about disability, cures (and the lack of them), living well, and healing:
“People who have disabilities or who are enduring an intractable illness are often faced with a different challenge, one that defies healing but which requires us to think about being well just the same. As a teacher with a disability who is increasingly researching the ways that culture influences our ideas about “ability” and “disability” I have come to prefer the old metallurgical term “tempering” to “healing” because it suggests that we are getting stronger without denoting a complete physical transformation.
“Not every disability can be healed. I learned long ago that being “incurable” and being well are possible. But don’t go looking for this anomaly in the rule book. In effect what you need to do is break the rules that have long been established for how to think of being well. I am for instance the best blind sailor in my family. Never mind that I’m the only blind sailor in my family. I did in fact teach my sighted wife how to dock a boat. There’s no rule book for this.”
Like anyone else, having rheumatoid disease gets me down sometimes. Coping with frequent pain and disability gets old fast, and it’s easy to become disappointed when the latest miracle drug won’t do its miracles for me. But also like anyone who must live with chronic, incurable disease, I hope every day that then next new drug will heal me, and allow me to go back to living, if not a normal life, then one that’s almost normal. Hope is what keeps my eyes on the ball.
Although I can’t word it as eloquently as Kuusisto, I’ve also known for a very long time that even if a cure isn’t in my future, I can live well. Since my diagnosis with RD I’ve raised a child to adulthood. I’ve worked as a journalist and editor for the U.S. Army in Germany and later, for newspapers and websites here in the States. I’ve hiked, backpacked, and climbed the Sierras, I’ve skied in the Alps, traveled across Europe, been a wife, owned a home, run a household, shoveled snow, planted and harvested gardens, and chased wildfires and covered the visit of a sitting president for my newspaper. I struggled--and still do--with pain and disability while I did these things, but I did them anyway, and I’m proud of that.
Today I still write. I draw and paint, and I take care of my elderly mom full time. I’m sure I’ll do more interesting and exciting things in the future, because you know what? I’m not done with living well yet.
I’m sure you’re not, either.
*My ancestors were tough Finns. “Sisu” is a Finnish word that translates best as “stoic perseverance in the face of overwhelming odds.” I think most people who have rheumatoid disease have sisu.
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