Posts Tagged ‘amyotrophic lateral sclerosis’

Many years ago, not long after my sister was diagnosed with Lou Gehrig’s disease, I sat with her at the edge of her backyard pool, our feet dangling in the cool blue water. It was hot that day, the kind of hot that I’ve only ever experienced in the flat, red clay landscape of central North Carolina. The heat came up from the baked earth around us, rising in waves that made even their red-brick house — not more than 20 yards away — shimmer like a mirage. Overhead, the midday sun pressed down from an impossibly blue sky. Carolina blue, they call it.

A series of ornate planters surrounded the pool and the deck, but the season had gotten the best of them. Most of the plants they held still flowered, but almost apologetically, as though they knew that was what they were supposed to do, but just couldn’t summon the energy to do it with any vigor. In nearly every planter, a few weeds had taken hold — thriving in the extreme conditions.

“You know, sometimes I see things like that — those flowers — and I decide they need to be weeded, and before I even have a chance to think about it, I start to just get up and go do it. That’s when I remember.”

What she remembers, of course, is that she can no longer just get up and do something, can no longer count on her body to do as she would have it do. That is, perhaps, the cruelest part of the disease, or at least the most difficult thing for her to contend with now, in the earlier stages of its inexorable progress. Her mind has still not gotten used to the balking muscles. Her will to act has not yet been conquered by her inability to do so.

“The hard part,” she goes on, “is waking up every morning and wondering what I won’t be able to do that day that I could have done the day before. What small thing will I have to let go undone, or have someone else take care of?”

My sister must have had many mornings like that, mornings when she had to make that accounting. For more than a decade beyond that afternoon by her pool, she fought as hard as she was able to fight, summoned all she could summon to stem the tide of loss. In the end, such daily accounting must have become much simpler, for there was little beyond blinking, nodding, and ragged breathing that she could manage.

Two years ago today, she passed away, and while I do — and always will — miss her, I’m happy to know that in some ways, she has finally won. She has triumphed over the unwilling, the uncooperative, the unattainable. Today she rises at will, no longer burdened by her leadened limbs, no longer bound to a wheelchair or a hospital bed. Today — this day — she moves freely in and out of the lives of those she loved and those who loved her. We are many, and we are grateful.


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