Just being here is already a victory.
That’s what I keep telling myself, anyway. As my family and I stand near the starting line of this year’s ALS Walk4Life, basking in the sunshine and the positive vibes emanating from the 100+ people on our team, I’m trying hard to prepare myself for the disappointment of not being able to complete this two-mile Walk.
And while it’s true that just being here at all—-an astonishing five years after my ALS diagnosis—-is something I hardly dared hope for, I’ve also been secretly telling myself that if there’s any way sheer force of will can make a difference, I will cross the finish line on my own two feet.
Because this year, the Walk is more personal than ever. I can’t stop thinking about our ALS support group friends who died this year. I can’t stop thinking about the online friends I’ve made and lost. I don’t know why I lucked out to still be here five years later, and frankly, I feel more than a little survivor’s guilt. I do know that if it’s at all within my power to complete this Walk I will do it to honor them.
As teams take off across the starting line, we see many, many people wearing t-shirts or carrying signs indicating that they are walking in memory of a loved one who has lost the ALS battle.
My mind shifts to the countless other walks held for cancer, AIDS, diabetes, and so many other horrible diseases. I can’t help but wonder about the numbers of teams walking with a patient or survivor of those diseases versus those walking in memory of a patient who has died. Is it possible that any other walk has a worse ratio than we do? Given the merciless pace of ALS and the lack of any effective treatment, I doubt it.
And that leads to one of my major frustrations with this disease, as well as one of my major motivations for trying to raise awareness and money. How is it possible that 70 years after Lou Gehrig died, the prognosis for a newly diagnosed ALS patient is no better than his was way back then? How is it that the life expectancy hasn’t budged? How is it that so many other diseases—as heartbreaking and insidious as they are—at least have treatment options? That they have survival odds somewhere above 0 percent?
As we walk, we are confronted with signs quoting familiar statistics many ALS families could recite in their sleep. Each one is more dismal than the last. But as I read them, my anger builds. And, in turn, so does my determination. I can’t tell if my heart rate is rising from exertion (probably) or from impatience (probably that too) at the unchanging stats.
These stats, while true, are too sterile. These stats, disheartening as they are, don’t even begin to convey the harsh reality of the thousands of families living with ALS. They don’t convey what it’s like for a little girl to watch her dad’s strong frame shrink, for her to help feed him when he can no longer lift a spoon, for her to bat away mosquitoes that he can’t. They don’t convey what it’s like for the boy who remembers his mom playing tag and follow-the-leader with him, who sees her choke and sputter and gasp after taking a simple sip of water, who wonders whether she can hang on until he can grow up and find a cure.
I pause to catch my breath and take in the scene. Teams have been passing us all along, and our group is likely the last one on the course. I want so much to quit, to succumb to the fat cushion on my wheelchair’s seat that’s been taunting me for nearly two miles. We’re in the home stretch of the Walk now, and I’m barely moving.
As I take a deep breath and stumble onward, I see a kind of parallel between this stage of the Walk and the ongoing search for that elusive treatment or cure. Where are we in terms of progress toward our goal? Are we in the home stretch? Or barely moving? Seventy years since Gehrig’s death, I sometimes wonder.
Finally, mercifully, the finish line comes into view. I tumble into my wheelchair, out of breath but exuberant, and look around at all the young kids from our team cheering along the sidelines.
And it is in their faces that I see the other reason I wanted to finish this Walk. When those children grow up, will they have friends who have ALS? Will the prognosis still be the same? Or will the breakthrough finally have come? Will they have friends who are managing ALS while living fairly normal lives? Or friends who had ALS, were treated, and now are ALS-free?
That would be the sweetest victory of all.
by Aimee Chamernik