"Don’t tell anybody."
My diagnosis of multiple sclerosis was about 15 minutes old, my head was still spinning but my father spoke with the authority of one who had been living with the same illness for decades.
"You have to protect yourself," my father continued without emotion. "MS scares people away. Nobody will hire you. They will discriminate against you. You have to watch out for yourself."
Courtesy Richard M. Cohen
And so began the long process of sorting out what was appropriate or inappropriate to tell the world about my condition. I wanted to believe my old man was mistaken, that others would not be put off by my own personal neurological nightmare. I was 25 years old, with very few symptoms of a disease that would unfold slowly. A journalist by trade, I was being advised to withhold the news. I decided to experiment with the truth.
At the time, I was in graduate school, being courted by NBC News, and I had been led to believe there would be a job waiting for me when I finished. When I leveled with them about my condition, the lights went out in their eyes. A few years later, I would lie my way into a job with Walter Cronkite. My father already had been pushed out of his position as director of anesthesiology at a hospital in Hartford, Connecticut.
In those days, it would take a discerning eye to know that either of us had MS. In the coming years, I would watch carefully as my dad made his way from his own two feet to a cane to a walker then to a wheelchair. There was no high emotion along the way, probably sadness, but the determination to complete his journey with grace.
That was important. My old man taught me to never feel sorry for myself. The question "Why me?" was verboten under his roof. I made the mistake of uttering those very words in his presence just once. I was 30 and had just discovered I had a hernia in need of repair. I felt like a victim, and said so. My father quickly labeled me, well, a professional asshole. I did not make that mistake again.
The man had an unspoken mission to be a role model. He did not complain. Ever. I know he was not fabricating a brave front or propping up his upper lip for my sake. That was who he was. His deep inner strength seemed to be contagious. After he had to give up his medical practice, he hit the books, passed his boards in pediatrics and went back to the operating room as a pediatric anesthesiologist at a highly respected children’s hospital in the area.
The guy was resourceful. He just quietly kept on. That is all you can do with a debilitating disease. Except it also is what you must do. I have picked up the pieces and moved forward in my life. Friends have noted how many times I have reinvented myself: TV reporter, book author, web columnist.
Please forgive the self-serving sound of this account of my trek. The only point is that a person must keep going. On the off chance that this is my one shot at life, opting out and bowing to illness simply are not options. I have a good life. I have been lucky.
The old man might be shocked if he could hear me say such a thing. Or maybe not. I heard such from him for many years. I have a great family, kids whose lives are launched. Their orbit is high, and I do not worry much about them. My wife, Meredith, is Meredith, a bright star and always there for her family — even me, remarkably enough. What do I have to complain about?
My old man lived to know his eight grandchildren and see his 90th birthday. Then he left. I was not there for that, looking to see whether he moved on with a smile. That would not surprise me. I need to frame this column and hang it in some private place where I can reread it from time to time. The lessons are too easily forgotten. I, for one, do not have the time to wonder why this all has happened, either. Life is what it is, and I have a lot to do.
Also of interest: Chronic disease: a different road.
Emmy-winning TV producer and author Richard Cohen has lived with multiple sclerosis for more than 30 years. He writes bi-weekly about living a full life with a chronic disease.
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