Always Looking Up

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.)

Always Looking UpSo 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!

6 Comments
6 comments
  1. Marcia says:

    I have finally been able to read again. Books were so hard for me to hold for even 15-20 minutes of reading. I bought a Kindle2 and am reading again! It is lightweight, no holding the book open, the print size is adjustable, the page can be “turned” with either hand. I can read for hours! No trips to the bookstore (30 miles plus away) and downloadable books anywhere I am. Can I say I love this reader? I am reading again!

  2. MissDazey says:

    As we often say, attitude is everything. I really admire both Christopher and Dana Reeve. Michael J Fox is another hero. Yes, these people have the money and fame to do big things for their causes, but we all can contribute something.

    Today I am looking for that something special I can contribute.

    MissDazey

  3. Wren says:

    Wow — thanks for the excerpt, RA Guy. Makes me want to read Fox’s book. It’s incredible the amount of inspiration and insight available out there these days. SO much more than when I was first diagnosed. We’re very fortunate.

    Marcia — I just got a Kindle2 for Christmas, and like you, I’m delighted to be able to read again to my heart’s content. I’d been unable to hold a book in my sore hands for a long time, so the Kindle is like a small miracle. Now, we need to read Michael J. Fox’s book!

  4. amanda says:

    I need to read that book! I think Lance, Michael and Chris are all amazing examples of making it work. I was really affected by an interview with Elizabeth Smart of all people earlier this year- I can’t remember the context of the question but the answer was ‘who would I be to wish this upon anyone else?’ I need to find it again and post it- the sense of responsibility and acceptance was pretty awesome to me.

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