Chronic Disease: Plugging In

December 20, 2011

I can feel low suddenly and without warning, triggered by the mere sight of a physically normal person performing an everyday task I’ll never do again. Sitting by the skating rink at Rockefeller Center, watching kids glide along on the ice, I am startled to see people skating backwards in circles, as if it were no effort. Nearby, shoppers run up and down stairs, skipping a step occasionally and holding onto nothing.

Dizziness washes over me. How do they do it without careening down the stairs, as if in a chute? An exquisite sense of loss overtakes me as I feel again what is missing in my life. There is a loss for all seasons: Spring hikes, summer strolls along the beach, autumn games of touch football join my growing catalogue of what no longer is possible. Even the more mundane tasks — unloading the car, taking out the garbage — are out of reach now. Keeping my spirits up, and my sense of self intact, is a never-ending struggle.

When my wife, Meredith, and I made the rounds of talk shows recently to promote our cover on AARP The Magazine, I told Anderson Cooper that when there’s a problem, it’s important to become part of the solution. That piece of the puzzle may be modest, even small, but the psychological payoff can be large.

For me, participating in the work of affinity or advocacy groups provides the satisfaction of reaching out to others who share my illness. So many of us long to touch and be touched, to connect with others traveling the same road. We deal with doctors enough. Ordinary folks with shared experiences provide a missing link.

Living with a serious illness is in no small part a mind game. We want to feel good about ourselves.  I write again and again about the assault on our self-worth.  I have paid close attention to the tendency to isolate ourselves. The seriously sick walk a tightrope, trying so hard to remain emotionally upright, to feel whole. We desperately want to function in the world, which means we must resist the never-ending urge to crawl into a hole.  We need each other.

We have to engage to be proactive. Those of us who know illness just might profit from working with others. We can share and feel we are a part of a struggle larger than ourselves. This can be a marvelous antidote to inevitable self-absorption.  All of us want to find happiness and live well.

One popular brand of politics suggests that we stand alone, rejecting the notion that we owe each other anything. Those are the politics of the selfish spirit.  When it comes to dealing with debilitating disease, no man is an island. We can be there for each other, helping the suffering through bad times and helping ourselves at the same time.

Empowerment flows both ways. I take phone calls all the time from folks who want to talk about their illnesses. I do not know if I help people, but I know I am helping myself.

Connections matter. I am not sure why that is. Maybe the human touch, even on the phone, reassures us we are not standing alone on the battlefield, fighting for our lives. Loneliness is a common theme at gatherings of chronic illness sufferers I have addressed. No matter how supportive families and friends are, it is wrenching for us to feel so alone.

Sometimes it takes a stranger to make us feel less lonely.

Being there for others can make a bad condition not good, but simply less onerous. Doing something constructive with disease makes me feel like a better person. Nobody I know would hesitate to trade in a horrible illness if such were possible. I would swap MS or colon cancer for an ancient station wagon held together by Band-Aids and baling wire anytime. That is how I see myself sometimes.

And that, of course, is not going to happen. So it is time for Plan B. If you are chronically ill and unhappy with your lot in life — and that includes most of us — do something about it. If your legs can support you, stand up. If you are in a wheelchair, roll yourself to a different place. Try something new. Plug yourself in. You have nothing to lose. That missing something might be within reach.

One Response to Chronic Disease: Plugging In

  1. Dee October 14, 2013 at 9:44 pm #

    “I do not know if I help people, but I know I am helping myself.”

    You ARE helping people! As someone who has been newly (under 2 years) diagnosed with MS I have read your book and am so thrilled to have found your blog. Your determination to remain positive and appreciate your life despite all you have been through is inspiring. As someone who feels very much alone in this life – I can’t tell me how much I appreciate you sharing your experiences, feelings and encouragement.

    D