Some of us hide our inner struggles rather well. We may be choked by fear or overwhelmed by just getting by. Or, maybe we just don’t want to draw attention to ourselves when so many others have seemingly greater battles. I understand all of the above. Sometime it just feels easier to simply post jokes or cute pet pics or random thoughts about our world.

Today, I risk sharing something more profound, something that may actually save a life. I’m wrestling with full disclosure right now, but I write the following with the hope to be of help to others.

This past week, comedian, performer, and humanitarian Jerry Lewis died, but his legacy for raising billions on behalf of the Muscular Dystrophy Association (MDA) lives on. Even in someone you know. Me.

In August 2010, after four and half years of tests and waiting and more tests and waiting, I was diagnosed with a rare adult-onset metabolic muscle disorder called carnitine palmitoyltransferase II deficiency (CPT II). Yes, I still have to look up the spelling. A few weeks after hearing the results from my muscle biopsy, Jerry hosted his last MDA telethon. I wish I had written a thank you note to Jerry. He championed so energetically for those of us with muscle diseases.

Basically, at the cellular level, my body does not efficiently transfer fats for energy. Children born with the lethal neonatal CPT II form die within days, those with the severe infantile form often die by their teen years. I am grateful that my form of CPT II mainly results in occasional flare-ups of Charlie horses and overall muscle pain. A few years ago I consulted with the head of neurology at Denver’s University Hospital and he informed me that I am in .02 percent of the population. The U.S. National Library of Medicine reports there are “more than 300 reported cases.” I am a rare individual indeed. J

I daily take the enzyme my body lacks and I’m learning to pace myself with my diet, exercise, and rest. The docs also think the onset of the metabolism disorder triggered my zillion food allergies. But you know what? I am grateful to be alive and able to function pretty much without a blip. Some statistics report that 96 percent of chronic illnesses show no visible symptoms. Many of those with not-so-obvious health conditions (depression, chronic fatigue, etc.) grow weary from the skepticism or the well-meaning “but you look so well” comments.

After my brilliant neurologist broke the mitochondrial disease news to me, I quipped, “So I’m one of Jerry’s Kids!” It’s humbling to think about being a part of such an extended family. I want to thank Jerry and all of you for caring about the millions of people helped by the MDA over the years. It’s taken me seven years to feel comfortable enough to say something more publically about my being under the MDA umbrella. I share this post, not for my sake, but for Jerry’s Kids who still long for a cure. For their families who endure and hope for better outcomes.

Will you do one thing for us all? Turn on the Labor Day telethon this weekend and give a salute to Jerry. Without his untiring efforts that have changed the course of numerous neuromuscular diseases, I may not be typing this right now. If you’d like to make a donation to the MDA, please do. I think there’s still plenty of handsome fireman collecting with the Fill the Boot campaigns too.

So thank you for being the kind of friend whom I feel safe enough to share the truth. And although I’m a bit late, thank you, Jerry, for your decades of Labor Day weekends urging “just one more dollar.” THANK YOU!

“I shall pass through this world but once. Any good, therefore, that I can do or any kindness that I can show to any human being, let me do it now. Let me not defer nor neglect it, for I shall not pass this way again!” —Jerry Lewis

 

 

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