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?