To Be or Not to Be

Patient Expert

_"I don't have a choice of whether or not I have Parkinson's: I have it. But other than that, I have a thousand choices, and I can't let myself be sunk by the weight of that one non-choice..."

  • Michael J. Fox, Entertainment Weekly, April 17, 2009_

When I was four years old, my body was hijacked, possessed by another entity bent on taking over my life. For decades, it has been in charge of what I do each day, randomly and capriciously deciding that today, I get to live my life but tomorrow, I will sit quietly, take painkillers and watch the world go by. And for decades, I've dreamt of exorcisms, of regaining control of my day, my body, my life. I've fought back, tried to reclaim lost territory from the interloper, but to no avail. And there are times when it seems as if free will is for people who don't have rheumatoid arthritis.

When I attended university, we studied the concept of learned helplessness. A psychologist named Martin Seligman conducted an experiment in which dogs were exposed to electric shock -- one group of dogs could escape the shock by jumping into an adjacent area, the other group could not escape the pain. Very quickly, the dogs in the second group learned to not even try, curling up unmoving even when later given the chance to escape the shock. And when I've been stuck in pain for a long time or hear of others stuck in pain, I think of Seligman's dogs. Facing inability for long enough has a way of convincing you that you have no power. And so, we learn helplessness and come to believe there are no options and no hope. That the RA claims all.

But hope is out there, reminders that perspective is everything. It pops up in the most unexpected places -- a magazine, the dense yellow flowers of a forsythia announcing that winter has gone, a commercial, a snippet on a website -- and something clicks in your mind. Something reminds you that although we can't control what happens to us, we can control how we react to it and you make that phone call to your doctor, insisting that you are done waiting and now is the time for stronger medication. If your doctor doesn't listen, you find another one. Or maybe you're stuck at home, in pain, but you choose the decadent cereal, the one with nuts and dates instead of the Cheerios and make a phone call to a friend and spend hours laughing. You write a post to a website, sharing your story and it takes you three days to finish, but you do it anyway and find new friends. Or maybe it's as quiet as not curling up in bed under the covers, but taking the comforter to a chair in the backyard and listening to the birds. Because the RA may have your body, but you still have your mind, your heart and your soul.

Inch by inch, moment by moment, you begin to pull back your life, reclaiming what you thought annexed by RA, lost to you, but which isn't lost after all. And in slowly wresting back control, choice by choice -- some simple, some profound -- you begin to build your life again and over time, what is yours becomes bigger than the disease, becomes a counterweight. The more choices you make, the more awareness you bring to each choice, the more your life becomes yours again, the more you connect to hope. And with hope, you find the energy to make the calls you need, to seek out treatment, to connect to friends and to make the choice to live again. To believe that you are not helpless. And you find that you have free will, after all.

What has rheumatoid arthritis tried to take from you, that you refuse to give up? Tell us

You can read more of Lene's writing on The Seated View.