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.