The Beacon
Acton MA
March 17, 2011

The Path of Unknowing
by Dana Snyder-Grant

     Like many Americans, I have followed the story of Congresswoman Gabrielle Giffords with hope and optimism. Giffords' steady recovery from a gunshot wound to her head in Tucson last December offers an upbeat narrative – she verbalizes requests for specific foods, then mouths lyrics to familiar songs. Now, she plans to attend the launch of her husband's space shuttle on April 19.
      Giffords is a “fighter”, according to her husband, and we are buoyed by these words. But Richard Sloan, professor of behavioral medicine at Columbia University, reminds us in a NY Times opinion piece that we don't really know if “her recovery has anything to do with a fighting spirit.”
      What is it that leads one person to recover and another to decline? Having had multiple sclerosis for thirty years, this is something I often ask myself. Why does one person with MS need a wheelchair and another continue to walk? Why have I been spared lesions on my spinal cord that could immobilize me?
      The other night, some neighbors came over for dinner and asked about my health. ”How have you been feeling?” Ellin asked. “I see you walking everyday, even in this cold, and I am amazed. You're terrific. Do you know that?”
      “Thanks. I'm feeling great,” I answered. “I'm not walking as well as I did ten years ago, but I have more energy than I've had in years.” I didn't elaborate, for fear of jinxing myself, but I thought to myself that this wasn't supposed to happen.
      “Wow,” Ellin responded. “Well, you take such good care of yourself. You must be doing something right.”
      “I walk because I can,” I said. “But it's difficult to take credit for my good health. If I congratulate myself for doing well, what will I tell myself when the MS gets worse?”
      I'm not convinced that it's my actions that make the difference. Sure, it helps to keep my muscles as strong as possible. And I know that exercise feeds on itself, stimulating endorphins which improve mood and energy. There are days when I feel tired and don't want to walk. I do, anyway, and discover energy I didn't think I had. Then I feel better, physically and emotionally. But I think of friends and clients who are worse off than I.
     “I know people with MS whose illness is much worse than mine,” I told my guests. “But they're good people. I don't believe they've caused their MS to progress.”
      I think to myself that we don't “bring on” illness as new age gurus would like us to believe. That's too simple an explanation for the complexities of disease. “New Age fascism,” a colleague and wry friend of mine calls this blaming of the victim.
      We do know that MS varies considerably from person to person. I've had my share of MS symptoms from extreme fatigue to loss of vision to loss of strength, balance, and mobility. Maybe the choices I've made to manage life's stresses by minimizing work and pacing myself have made a difference. But there are others who do the same who are not as blessed. The MS in my body is just not the worst it could be.
      After our guests have gone home, I am struck by how often people engage me in this kind of conversation, and my driving need to stall their efforts. I am grateful for their love and care, but fear it, also. I feel as if I've been given a second chance to moderate the illness and I can't ignore it.
      It occurs to me that it's all about control. When illness hits us, or those we know, our first response is to try to explain the inexplicable. Didn't she have a healthy diet? Is his job stressful? We push illness away from ourselves, isolating those with illness even more. For if we distance ourselves from such tragedies, then we can control what befalls us and our loved ones. We don't want to accept that bad stuff just happens. For if we do, we confirm our lack of control, our fragility.
      I've learned that it's what we can control that matters. We can control how we cope with illness. We can reach out for support and ask for help. We can set priorities and learn to say no. We can blame our moral failings or we can believe that morality has nothing to do with illness. It's complicated, because there are some illnesses that are linked to behavior. Smoking increases the risk of cancer. But non-smokers also get cancer. As do saints.
      I think again of the news about Gabrielle Giffords. Yes, she's a fighter, and maybe that spunk boosts her immune system to ward off infection. But that's not the only reason she steadily recovers. On the days when she asks for toast, is that because she's a fighter, or because she's lucky, or because excellent surgery is knitting her brain together correctly? Or some combination of the above?
      How do we live with the unknowing?

Dana Snyder-Grant is a social worker and a free-lance writer who lives in Acton. Her book, Just Like Life, Only More So and Other Stories of Illness, can be purchased at Willow Books in Acton or on the internet at http://www.justlikelifeonlymore

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