I remember the day well. The day we received my sixteen-year-old son’s muscle biopsy results. Gathered in the prominent doctor’s office, we listened as a physician assistant explained life within the confines of mitochondrial disease.
I wasn’t overwhelmed by what we knew—by the concrete rules laid out. I was undone by what we didn’t know. By all the things that could happen. That might happen. That happened to others.
My imagination easily wandered because our world had been spinning for years.
By the time Sam underwent his muscle biopsy, my legs hadn’t worked well for almost four years. Weak and unsteady legs came and went depending on my level of activity. Then, a month after his procedure, I stepped on a pinecone, fell, and had to undergo surgery to reattach an ankle ligament.
While I was recovering, Sam’s biopsy report came back. And by the time we sat in that small room, trying to absorb the information, a MERSA infection lurked in his cheek. Two weeks later, I ended up back in the hospital with one of the largest herniated discs my doctor had seen. A discectomy alleviated the pain, but I woke from surgery to a damaged right leg and hip.
The constant barrage wore me down. So, when the mito doc wanted to perform a muscle biopsy on me too, I pushed back. But when my leg didn’t heal and walking became more difficult, months later I acquiesced to the muscle biopsy and spinal tap. My abnormal results then led Sam to have his cerebral folate levels checked via a spinal tap during Christmas break.
Basically, from October of 2009 to December of 2010, medical mayhem ruled.
While living my story wore me out, I’ve heard many others in the mitochondrial disease community share worse. For one, getting a diagnosis remains a challenge. So, years of inadequate medical help build frustration before one even lands in the fuzzy world of mitochondrial disease.
But if you’re new here I actually want to wrap this up with some encouragement. In time, life settled into a manageable rhythm. A lot of the scary unknowns didn’t happen. And much to my chagrin, my son eventually broke the rules, participated in an Iron Man, and survived.
The potential for decline still looms, but the thought doesn’t hang like a low-lying storm cloud. And several other families I know could attest to the same. Are we challenged? Yes. But can we overcome and still love life? Most certainly, yes.
The diagnosis is real and lifechanging. But traveling the unexpected road doesn’t always lead you astray. Sometimes it takes you to where unimaginable beauty hides.
So, reach out. Ask questions. Join a mito Facebook group. And breathe. There is much life yet to be lived.
About the Author: Susan Schreer Davis lives with her husband, their cat named, Eggs, and the challenging effects of mitochondrialdisease. Learn more about Susan, her latest book and many songs at: www.susanschreerdavis.com