Chronic Disease: Life Lessons

"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."

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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.

Next: Lessons too easily forgotten. >>