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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About the Author
Mary Herbowy
God speed.
Sandra Mikush
Thank you for your honest and brave column. As a pALS diagnosed 3 years ago at age 62, I still have plenty of life and function left. But my dad offered an important a lesson for my family when, at age 86, he decided to “stop having ALS”. When he chose to stop eating and drinking, our family supported his decision. With help from hospice, we spent a lot of quality time together over almost two weeks, and he passed peacefully. I’m grateful that we had that time together for laughter, tears and closure. He loved his life and was not depressed, and he was clear about his decision. I don’t know how I will feel when I get to that point, miracles notwithstanding, but I’m grateful that my dad taught me how to live and die with integrity and grace. Blessings to you and your family.
Jennifer
Thank you for your thoughtful, beautifully written reflections, Mr. Clingman. Your commentary offers a perspective that will bring comfort to many of us on our path. I wish you peace on yours.
Fran
Thank you for the courage to write this column. It must have been very difficult for you, but it has really helped me to understand what my husband may be feeling. God bless you.
Jennifer
Thank you for your thoughtful, beautifully written commentary, Mr. Clingman. Your perspective offers support to many of us on our own journeys. Wishing you peace on your path.
Klara Weis
I love the way you write, from your heart, and I think we all can understand your feelings. I come from the state of Washington where if we have a terminal disease we can end our life with our family around us or a group of friends singing us on my way. If we have lived our life the best we know how it is good enough! Wishing you all the best and thank you for sharing your thoughts.
Jeannette
I feel the same way as you do. I need my husband for my daily care and can do very little than sit in my chair, watch tv and play on my iPad. Most days I ask God, why do you keep me here when I can’t help myself much less anyone else. My husband doesn’t even want to hear it. He believes God will perform a miracle and cure me, when everything and everyone is saying that this diese will kill me. So I keep those thoughts to myself because I don’t believe I will be healed, as the disease keeps progressing. Thank you for sharing, it helps to know I am not alone
Bonnie Woolston
Dear Mr. James,
I hope you don't mind my addressing you in the familiar but, after you shared your soul so beautifully, I feel I know you very well. I should say, "I recognize you." You are so fiercely brave to expose your most secret needs with so many strangers, some of whom, I fear, may not understand your mind set. To those I might say, "Do not criticize him until you've walked a mile in this good man's shoes."
I recognize you, dear James, because your contemplated destination is very much like my father's. He spent the last eight years of his life as a quadriplegic due to our family's inherited type of ALS. My mom had died of cancer when she was just 38 and Dad was 40. He was left, a disabled man in the inaccessible world of the 1960s, with two young daughters to raise alone. He missed Mama terribly; his mother and mother-in-law could not get over their persistent dislike of each other; and Dad's ability to navigate getting to and from his workplace got more difficult every year. It pained him to know I had inherited the familial ALS he, his father, several aunts and uncles, all had -- a very slowly, but surely, progressing form of ALS that becomes symptomatic when we are toddlers and, drip by drip, becomes worse every year. It spares our bulbar region so it doesn't kill us, but it progresses to the point where we are, as young senior citizens, unable to do much for ourselves. Dad spent 36 years struggling, alone, the last 8 of which as a quad, only able to move his left thumb.
By age 75 Dad had been living in a nursing home for 7 years. The only other male resident, with whom Dad had shared many interests, had moved to a rehab facility a year prior. Dad started coughing, especially when lying down. The doctors told him his heart and lungs were beginning to fail. They didn't know how long before he died of natural causes, but they estimated it would be a couple of years. With this news Dad knew he was done with this life. His faith assured him he would be with Mama again. My sister and I were middle-aged adults. He -- finally -- gave himself permission to fulfill his own needs. He said good-bye to us. We shed some tears with him, but we both knew how very much he wanted to be released from 36 years of so much loneliness and loss. We promised him we would "help" him; we would run interference for him between his right to determine his own destiny and the nursing home staff who didn't know what to make of it all.
For ten days we never left his side. Night and day, we stood guard, shooing away well-meaning nurses who would try to get him to eat or drink. He even refused ice chips. Dad was a scientist; he knew how to die as efficiently as possible. We told the doctors we were breaking no laws and neither were they. This was 1997. Dad's actions were not ones that many had taken. Dad was so brave, so determined. I will always believe in his last days he was proud of his daughters for standing up for his right to live his life on his own terms. I also believe we convinced the care-takers on staff that living one's life includes the act of leaving this life.
This is why, Mr. James, I say, "I recognize you." I recognize you as an intelligent, thoughtful, kind gentleman, like my Dad. And I recognize that your journey is leading you to contemplate a similar destination as my Dad found in the end. My hope and prayer for you, good sir, is that your wife and daughter will become comfortable with your thinking. Dad had 'fought the good fight' long enough. It was time for him to go to his eternal home. Those last few days with him brought a blessed closure to our lives together on earth. I wish that for your family. When you're ready. When they are ready.
Thank you for sharing, Mr. James. May God bless you and yours abundantly.
Tom Barthel
Thank you, James.
I am not there yet. My work is unfinished
But the remaining tasks are finite.
If I am lucky enough to finish, I imagine I will be in much the same place that you are now.
Bless you for courage and honesty.
Tom