Here is the second piece for my writing class with the fabulous Marion Roach Smith…
It’s February, four years later. I’m in another gym pool for another swim workout.
There is a meditative quality to swimming that I find intoxicating. As soon as my head plunges underwater, the world falls silent. While most of my concentration is focused on the rhythm of my stroke, I cannot help grinning when my body responds to what I am asking it to do. It still responds! I think, and my heart leaps.
But in the midst of my joy, nagging thoughts creep in, the same circular series of unanswerable questions that keep surfacing during these workouts: How is it possible that my swimming is actually better today than when I was first diagnosed almost three years ago?
ALS is a tricky disease. If there are thirty patients in a room, they’ll all present different symptoms and degrees of ability. Some can speak normally, but are totally paralyzed. Others are walking around, but can’t talk at all. The rest are every shade and combination in between.
The only commonality is that they all tend to die in 3-5 years. Only 10% of people with ALS live longer than 10 years – most are immobile, tethered to ventilators, and completely dependent on others.
Which brings me back to the question: How could it be that my swimming keeps getting better? How is it that I’ve done marathons and triathlons on my trike and I seem to be getting faster?
The answer, in part, boils down to my particular symptoms. Although it takes longer for messages to get from my brain to the muscles, the muscles are still responding. As long as they can flex, they won’t atrophy, which is ultimately what will kill me.
But how long can I defy the odds? is the next logical question, one I’ve spent many swim workouts torturing myself with. We listened to the other ALS families telling us to keep ahead of the disease. I made a will and stopped investing in my 401(k). We got a wheelchair, handicapped accessible van, left the city we loved to move closer to my parents and into an ADA-compliant apartment.
We also did the mental preparations, which were infinitely harder. We cried, got angry, held each other, went to therapy, visualized the shift from spouses to a patient-caregiver relationship, talked about his future alone.
Could I live longer than ten years? It’s a question, until recently, I refused to consider. I dared not even let it slip into the tumbling spin cycle of my thoughts, lest it bleed onto all the other plans and dreams for my life that I was trying desperately to scrub clean, wring out, neatly fold, and put away in a drawer forever.
My neurologist at Duke has been studying ALS reversals – documented cases where people’s symptoms disappeared completely and they went on to live full, disability-free lives. Of the 30,000 people living with ALS in the U.S., he’s found twenty-six – 0.087%. But they exist. Could I be one of them?
In her memoir, I Remember Running, Darcy Wakefield wrote that she would wake up every morning and check to see if her ALS had reversed. It didn’t, and she died two years later.
But what if it’s not an overnight miracle? I ask. What if it’s just a sliver of a chance to reverse course before the nerve connections to the muscles flame out for good? Which is why after I finish swimming, I practice walking and exercise in the pool for almost an hour. My mom, who is always with me for safety, is convinced that exercise and food are keys to the body healing itself. So she keeps adding equipment to my routine: barbells, a noodle, and ankle weights. She may be right – with our efforts in the pool, pilates, and acupuncture, my walking and core strength have improved significantly over the past two months.
Here’s the real question – the one I always land on before climbing out of the pool and haunts me long after: Do I have the courage to have hope?
The pragmatist in me says, “Prepare for the worst, and hope for the best.” My husband and I have worked so hard to accept the death sentence that is ALS. To have hope means to risk breaking our own hearts all over again.
But if the journey of a thousand miles begins with a single step, maybe I’ve already been on the path for awhile without realizing it. Now I have to find the courage to say the destination out loud and march forward bravely, even if I die trying.