In 2012, Brian Trusty of New Lenox was diagnosed with a rare disorder.
In March, right before the COVID-19 pandemic began, he released a book about his battle with it, from symptoms to diagnosis to living his life with it.
The book's Amazon description has just one line: "A story of how a once healthy man came down with a terminal disease and how he is beating it."
The first five chapters are the "getting to know" Trusty kind of chapters. He talks about his early life experiences, falling in love, his grandmother, the loss of a child before it's born.
At the top of chapter six, now that the reader has insight into the author, Trusty hints at what's to come.
In late summer 2001, I was cutting the grass and it was hot. I came in for a drink and downed a can of soda in one sip. “Must be extra thirsty,” I figured.
The diagnosis was a type of diabetes that's unfamiliar to the average person. It has nothing to do with blood sugar levels or insulin shots. This type of diabetes is actually a rare disorder that upsets the fluid balance in the body.
In Trusty's case, it was an early symptom of an even more rare disorder.
Eight years later, Trusty vomited on a relatively tame roller carnival-type ride, a shock to him since he'd never gotten sick on the wildest of them.
Before Trusty had a diagnosis, he had vertigo - and then a mysterious skin lesion.
A short while later (a week, maybe) I was back at Rush and the same neurologist told me I have Erdheim-Chester disease (ECD). Then came the worst news that based on what they knew about the disease and its treatments he said I only have 3-5 years left to live.
That was October 2012. Eventually Trusty became bedridden.
But then something happened in 2015 that turned his life around. And, of course, ECD hasn't claimed Trusty's life yet.
You'll just have to read Trusty's book.
It's short, just 34 pages. Many of the 11 chapters are just a page long. It's very readable; it took me less than an hour.
Here's why you should read it.
Whether you or a loved one end up with a rare syndrome is not why you should read this book - although you'll definitely have good information if that should ever happen.
You should read the book to be encouraged and inspired.
For most people around the world, 2020 has been a trying year. But in plain, everyday language from someone who lives in your community is a guidebook, so to speak, on how to live each day with uncertainty.
Of course, all days are uncertain. Still, before March, they felt more certain. In some ways, people like Trusty are better prepared to live with the lack of guarantees because they are already doing so.
In the meantime, they learn to live.
I went from being bedridden, to a wheelchair, walker, cane and now nothing...I am trying to get involved in a dance class and acting. So, wherever we go from here, I am going dancing and having fun. Wanna dance?
Buy Trusty's memoir on Amazon.
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