Thanks to the local ALS chapter, I now have a bright red scooter from their lending closet. Since walking more than a short distance has become a challenge, my mobility is greatly extended and it’s easier to get out around the marvelous neighborhood where we live. I will be riding my scooter in the DC ALS Walk on Sunday – hope to see many of my readers there.
Starting to use the scooter is just the latest in a string of major changes to my lifestyle and capability resulting from my ALS. I pretty much no longer “eat”, but take almost all my calories through my feeding tube. Impromptu speech is a thing of the past, but I manage to communicate with a combination of nods and smiles, hand and finger gestures, writing on paper or a convenient iPad app, or using another iPad app to actually “speak” for me. That last app is so terrific I can chair meetings and make speeches with it. Even if I can no longer walk as easily as I could a few months ago, I can still get around when I need to – and I have lots of help when I need assistance. Luckily I can still drive safely, but that is just a matter of time I believe. But I did get one last great summer with a convertible.
While I miss all those capabilities, I am realizing they are not all that essential to what is really important – staying connected to family and friends and living every day as fully as I can. As long as I can get my nourishment, move around, communicate and give and accept hugs, I can live a complete life today.
I am still able to appreciate beautiful music and art that stimulates the senses. I can smell wonderful food even if I cannot swallow it. I can read and write. I can be out in the bright autumn sun and cool breezes. I can wonder at a rainbow and the bright harvest moon. I can cheer when the Red Sox win, and sulk when they lose. I can have a workout and massage at the gym and feel stronger and more limber.
And even if I am unlikely to jump out of an airplane ever again, I can relive that experience and the exhilaration (and perhaps a moment of fear) every day – and usually I do.
So my new wheels may represent a transition, but not a sharp break from the past. I will be easing into my redefining life as gradually as I can, saying goodbye to things that used to be part of my repertoire – but were not my real true essence. That I hope is unchanged, and only grows stronger as it is constantly fed by the immense stream of love and care always heading my way – and that I am trying as hard as I am able to return in kind.
In the end its all a matter of accepting the passage of time, as these lines from Philip Larkin remind me.
Truly, though our element is time,
We are not suited to the long perspectives
Open at each instant of our lives.
They link us to our losses: worse,
They show us what we have as it once was,
Blindingly undiminished, just as though
By acting differently we could have kept it so.
Last stanza from Philip Larkin, Reference Back