Though it’s only been within the past two years that I’ve become sick, and the past month that I’ve begun to openly talk about it, chronic illness has long been a part of my life.
My dad was diagnosed with Early-Onset Parkinson’s Disease when I was ten years old. I don’t remember much about the day my parents sat me and my sister down to tell us, but I remember that it was the first time I saw my father cry.
My young, sheltered self could not comprehend the tragedy of such a diagnosis. It must be serious to make Dad cry, but he seemed so fine! And for the first ten years or so with the disease, he was.
But, as with all neurodegenerative diseases, his symptoms grew worse. They became less of a minor inconvenience and more of a daily challenge. He took every medicine available (some of which were effective and some of which were not), worked out, ate right, and still, the disease progressed.
Last year, the worsening symptoms, coupled with his decreased quality of life and frustration at the lack of other options, culminated in the decision to pursue a deep-brain stimulation surgery (DBS for short). It was not a decision made lightly. Even as recently as a few years ago, he made comments that there was no way he was letting some doctor go poking around in his brain while he was awake! Never say never…
Late last fall, after many months of tests, appointments, arguments with the insurance company, and a fair amount of nerves, he and mom drove to Vanderbilt to have a doctor do exactly what Dad said would never happen—poke around in his brain while he was awake.
The DBS surgery occurs in three stages. All three of Dad’s surgeries went smoothly, and he appeared to be healing up well. In January, he and Mom drove back to Nashville to have the device in his head turned on. This was to be the day that Dad experienced relief, but what he experienced instead was heartbreak.
He had an infection. The wires in his brain and the battery pack in his chest and the hope in his heart were removed later that morning.
But my father cannot be broken so easily. He is strong. He is resilient. He is still fighting.
Today, he goes in for the second (and most invasive) of his second round of DBS surgeries. Not only did he allow a doctor to poke around in his brain while he was awake once…He’s allowing it again! If it wasn’t such a serious matter, I’d have to laugh a little.
I’ve always looked up to my dad. He’s obviously had a huge impact on my life. But perhaps what I admire most about him is his utter determination not to simply fold under the great weight of the disease he carries. He was dealt a rotten hand. Diagnosed with a disease that generally affects the elderly at the age of forty, forced into early retirement from a career that he loved and had dedicated his life to, watching his physical capabilities slip away slowly, given hope in the form of a major operation only to have it ripped away one month later, he had every right to be angry. He had every right to be bitter. He had every right to feel sorry for himself.
But he wasn’t. He was happy that he got to be a stay-at-home dad. He was thankful that he got to spend more time with his family. He never lost hope, even in the hospital being fed tons of antibiotics to fight off the unwelcome guest that had hitched a ride on the hardware in his head. He never lost hope.
And that is what I try to emulate in my battle with chronic illness.
I want to be strong and brave in the face of hard things, just like Dad. I want to find joy in the curveballs life throws at me, just like Dad. And I want to be able to cling to hope, even in the most devastating of circumstances, just like Dad.
If you happen to read this today, say a little prayer for my Dad that everything would go well and that he doesn’t have any additional complications this go-around. They are much appreciated.
And if you’re interested, he is also blogging his journey with DBS. You can read the saga in his own words here.
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