Rheumatoid Arthritis Guy spent a large part of this past weekend reading. I have always loved books since I was a little kid, and continue to purchase them at a pace faster than I can read them. (I’m also coming off a couple of waves of new books – when someone from the U.S. comes to visit me and asks what they can bring, I always place a mid-sized order of Amazon books and ship them to their address.)
Come to think of it, reading is a perfect companion for many things, especially for chronic illness. As I tried giving my feet a rest during the past few days, and as my energy levels were extremely low, reading was the perfect activity to keep myself occupied. (I’ll also let you in on a little secret…one of my resolutions for the new year is to read more.)
So I finally got around to a book that has been on my Sony reader for quite some time:Always Looking Up: The Adventures of an Incurable Optimist by Michael J. Fox. This book was reviewed quite a few times within the chronic illness blogging community soon after it was released. Instead of giving it another go round, I’ll instead highlight some of the parts that stood out to me most both for their optimism and for their ability to accept reality.
I was especially impressed by [Lance Armstrong’s] strength in facing his own ordeal and his recognition of the situation faced by others. The Lance Armstrong Foundation, although still relatively young, was already living up to its mission statement: “To inspire and empower cancer sufferers and their families under the motto ‘unity is strength, knowledge is power, and attitude is everything.'”
I considered Lance, along with Christopher Reeve, a role model for what I hoped to accomplish. There were both men who has met transforming challenges. Each had taken a negative and turned it into a positive. I didn’t have to let the terms of the disease define me – I could redefine the terms. And maybe in the process get a better deal for me and everyone else in my situation.
For weeks after Chris was hurt, it seemed that the press and public alike would never tire of strained allusions to his Superman persona and the “bitter irony” of it all. But while so many were preoccupied with the “superhero suffers real human tragedy angle”, few anticipated the actual flesh-and-blood hero Christopher Reeve would become. Chris defined hero as “an ordinary individual who finds the strength to persevere and endure.”
Let’s face it, the whole episode, unpleasant though it may have been, was a gift in the same way that I have described Parkinson’s as a gift. You suffer the blow, but you capitalize on the opportunity left in its wake. “The notion of hiding–this is what struck a nerve. Feeling the need to hide symptoms is so key to what patients of all kinds of conditions, but particularly Parkinson’s, have to face. We have to hide–don’t let anybody see, don’t let them think you’re drunk, don’t let them think you’re incapable, don’t let them think you’re unstable, you’re unsteady, you’re flawed, you’re devalued.
As I gained more intimate knowledge of myself, why I did the things I did, what my resentments were, and how I could address them, my fear began to subside. The same holds true for Parkinson’s. I feared it most when I least understood it–the early days, month, and years after I was first diagnosed. It seems strange to say it, but I have to learn to respect Parkinson’s disease. Instead of being reactive, I started being proactive, reading all the materials available, meeting with doctors, surgeons, researchers, and finally, after many years of lingering fear, getting to know fellow Parkinson’s patients and other members of the community. Respecting it, however, doesn’t mean tolerating it. And you can only vanquish an enemy you respect, have fully sized up, and weighed by every possible measure.
Chris Reeve wisely parsed the difference between optimism and hope. Unlike optimism, he said, “Hope is the product of knowledge and the projection of where the knowledge can take us.” If optimism is a happy-go-lucky expectation that the odds are in my favor, that things are likely to break my way, and if hope is an informed optimism, facts converting desire into possibility, then faith is the third leg of the stool. Faith tells me that I’m not alone.
And in case you were wondering – yes, I would recommend reading this book!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!