Living my life in the key of D minor
A reflection on living as it stands now
After a great deal of introspection, I decided for this month’s column to reflect on my life as it stands now. I wanted to write about it without being too ominous and dreadful, but I don’t think that’s possible.
My love for music prompted the headline, because within the music lexicon, some keys make us happy, some make us sad, some bring relaxation, and others make us want to move our bodies. The key of D minor is one of the darkest sounds. It’s been described as tragic, sorrowful, somber, and melancholic, which best describes my current feelings.
Like music, life comprises a broad spectrum of emotions, pitfalls and high places, success and failure, victory and defeat. ALS brings up those same realities, but with a different twist.
Our bodies face constant and relentlessly degenerative physical abilities. As of today, nothing short of a miracle (I do believe in miracles) can cure us, which wouldn’t be as bad if the degenerative activity would cease. (Many people live for decades with permanent disabilities and diseases.)
I’ve just gotten to the “What’s the point?” stage of my disability. For the past few years, I’ve been living for my family and trying to get us on the right track regarding my absence. I believe that goal has been reached.
I’ve been affirmed and encouraged by friends who tell me how I’ve helped so many others through my example of continuing to be productive. It’s great to have supporters who make deposits in my life while I can enjoy them.
Despite all the positive comments that have come my way, I’m very tired of the life I’m living, a life in which nearly every song is in the key of D minor. I wouldn’t end my life unnaturally, but I’ve lost a sense of purpose, so I won’t take every measure available to extend my time.
You could ask 100 ALS patients how they get through this disease, and you’d probably get 100 different answers. As for me, I’ve had a long and blessed life, and my balance sheet shows a significant net worth. I’m so grateful to know that I’ve had more highs than lows, and that’s good enough for me.
Acceptance is hard
The hardest thing about writing this particular column are the feelings it will conjure up in those who care about me. Let me share a lesson l learned from my mother’s death.
She was feeling pretty bad one day when I was visiting her. Bedridden and in constant pain, she wouldn’t eat her favorite ice cream that I’d brought her. I became frustrated, and during our limited conversation that day asked, “Do you want to give up?”
Without hesitation, she said, “Yes.”
I was hurt. How could she want to leave me? She died a short while afterward. The lesson learned was that I was placing my selfishness over her suffering. She had just as many reasons for letting go as I had for her to hold on. Now I stand in the same place she stood and feel the same way she felt.
As I continue to live in the key of D minor, although I can’t decide when it will be, I hope that those I leave behind, those who want me to stay here, will only want what’s best for me.
I’m sorry for the candor of this submission. But my moniker, after all, is “Outspoken.”
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