What a Stranger’s Death Taught Me About Living With Sarcoidosis

This wasn’t the article I intended to write.

No, I was crafting a breezy piece on the eternal wisdom found in the lyrics of Bruce Springsteen’s “Thunder Road” when a 45-year-old man from Cincinnati, a man I have never met or even knew existed, died.

All reports indicate he was an honorable man. A good man with a big heart. He was a Marine who served in Desert Storm. When he returned from duty, he became a firefighter and an EMT. His friends said he loved helping and serving the community. His fire station captain described him as fearless, always the first to rush into the fire, always willing to put his life on the line.

But friends say underneath his fearless facade, he was a jokester. A man who pulled pranks. A man who loved to laugh. In 2014, he went out for a jog, developed chest pains, and that big heart of his fluttered and seized. He survived but over the next year his health rapidly declined. He died on January 18, 2016, from complications fueled by sarcoidosis. Even for doctors, understanding sarcoid is often difficult.

I think sarcoid is like the tequila of autoimmune disorders. When the cap is twisted loose from its grooves, it’s hard to predict what will happen next. Sarcoid causes inflammation and granulomas (tissue masses) to grow in the body. These granulomas can increase in size and attach to organs, nerves and muscles. According to the Foundation for Sarcoidosis Research, sarcoidosis “most commonly targets the lungs and lymph nodes.”

But in his case, as in mine, the sarcoid was considered progressive, since it was found in different regions of his body. Adding to its perplexity, unless the sarcoid attacks the skin (which it can, leaving sores and lesions), most sarcoid patients look normal. There are no outward signs of distress. 

Since reading his story, I have lost sleep. Between my wife’s little snores and the growling of the oil heater, I have thought greatly about his life. And his sudden death. Before my sarcoid diagnosis, the death discussion would make me squirm. I’d tuck it away like a credit card bill and make feeble attempts to address it later. And when I did, I was just paying the minimum balance.

Since my diagnosis, here’s what I’ve learned: Bad things will happen. Things you thought only happened to strangers in places like Cincinnati actually happen to you. I also learned that when bad things do happen, you can accept your lot or you can ignore it, deny it or rail against it. (I think he and I would have agreed that the later three are bad choices.)

With much respect to my Fitbit and Rocky Balboa, the prospect of death has been my greatest motivator. Learning about the dangers of my disease and seeing my vital organs projected on an X-ray screen awoke me to the preciousness of life. I don’t believe death is the worst thing that can happen. In fact, it’s a natural part of life. I think a greater tragedy occurs when you live an inauthentic and uninspired life. When you disengage from your own possibilities. For when you live in fear of death, you limit your ability to fully embrace life. And instead of participating in your life, you become a spectator, a benign witness to your own calamities.

From what I read, he lived authentically. He scoffed at death and embraced life. He ran full-heartedly into firefights and burning buildings. A man unafraid to die. A man fully engaged in life. So I thank this man from Cincinnati — a friend I never knew — for reminding us all how to live.

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