It was three years ago this month when I first noticed something was wrong. I was playing tennis, and when I tried to push off for a quick lateral move to hit a wide shot or poach it was as though my brain said “go” and the leg said “no.” There was a strange delay in messaging, and it meant that my first step was fine but the second one was dangerously late and awkward. I fell several times, to the point my doubles partners started to worry about me and I stopped playing. I initially attributed it to being out of shape after a lengthy recovery from a knee injury. But from the start it never felt like I was just tired or out of shape — it felt more like a disconnect in the messaging. And it was. It took me 12 months to mention it to my family physician, and another 3 to get the diagnosis.
So now I’m entering year four with ALS. The disease’s symptoms are, for now, still confined to my legs, which are gradually weakening, in maddeningly asymmetrical ways. The foot that was initially weak is now stronger, the foot that was strong is now much weaker. Balance is hard — I walk very slowly and deliberately if without a cane or an ankle foot brace. Bending over to pick things up or tie a shoe is an adventure in balancing. But with the ankle foot brace (AFO) on my weak left foot, I can walk for several miles, at a reasonable pace, and work out on the reclining bike machine for an hour. Weirdly, it’s easier to hike a mile than to just stand with confidence without shoes at the kitchen sink.
This is all good news, under the circumstances, since the median life expectancy for people with ALS is only three years from symptom onset. But as I enter year four, surpassing the terrible three year benchmark, I can feel the legs weakening, and can feel fatigue set in faster when I walk for long distances or climb stairs. So far, this has been a slow progression, and seems to suggest that I qualify as a “slow progression” case. But it’s still a disease progression, and like everyone else with ALS, I’m on the clock.
We’re all on the clock, of course. It’s just that some of us can see the sand moving in our hourglass a bit more vividly than others. When you’re “living on borrowed time,” it incentivizes setting clear priorities and making the best use of whatever time one has left.
For me, my priorities and goals for 2020 are to be a good role model to my children and students for how to handle adversity with as much grace and sense of humor as I can muster; to fight death without fearing it; to spend quality time with family and friends, celebrating everything life has to offer with them; to stay professionally active as a teacher and scholar; to redouble my volunteer work with ALS organizations to raise awareness, raise funds, provide quality care services, and promote policies that expedite the search for therapies that halt or reverse ALS; to work to build better collaboration, trust, and unity of purpose within an ALS community that is frustratingly and unnecessarily fractured; and to thank God every day that I have such a loving and supportive family to count on.
Ken's Caucus 