Whispers: Chapter 14
B
ed. Safety, comfort — and a barrier holding me back.
At my six-week checkup, the doctor pronounced me well on my way to healing and advised me to go ride a rollercoaster — I needed to get moving. But the pain…I just couldn’t do it… Yet if I wanted to recover my health, I didn’t have a choice.
I went from my bed to the airport, to Florida, as the newest addition on the Kids of Courage summer trip. With around 100 campers and 300 staff members, including an extensive medical team, the campers and I were ready for the experience of a lifetime. I beeped my way through the airport scanners, then discovered on the plane that my rods were shaped one way and the airplane seat another, we just didn’t click…I shifted, moaned, popped pills, and made it there.
When I arrived at the Florida hotel, I crashed onto four chairs on the edge of the welcome hall. I took a look around me. In wheelchairs, attached to oxygen tanks, minus limbs, and in all shapes and sizes was the bravest group of people I had ever met. For the first time in my life, I found myself in a place that admired differences. I witnessed acceptance in its most beautiful form. As I finally sank into my hotel bed, I began to wonder, what was it that had made me work so hard to hide Marfan’s from the world? Just because it was hidden, did it have to remain that way?
For ten days, I dragged my body through the schedule, determined to get stronger as fast as possible, and gaining inspiration from the campers around me who battled their own pain every day. My Kids of Courage tee-shirt earned me respect from amusement park employees and an evaluating look; camper or counselor? In this euphoria of celebrating each and every life, I still didn’t fit in. Externally, I’ve always been free to integrate into “regular” society, but couldn’t quite perform on a regular level. As I lay on a park bench, exhausted, unable to pull myself a step further, most people took a look and assumed I was just chilling.
At the end of the trip, I was back in my own bed, inspired, stronger, and confused. Why didn’t Marfan’s fit anywhere? And I wondered: Were there any other people out there like me, with a hidden disability?
I needed to keep going out, but when I did, I bumped into a huge disability — I couldn’t drive. Well, technically I could; I had my license, thanks to an incompetent eye doctor who signed the sight form. Being honest with myself, though, I knew that it was insane to drive: I couldn’t see more than two feet from my face. But I needed independence. The words from one of the KOC doctors came back to me: “Removing your internal lenses, which are dislocated by Marfan’s, and replacing them with external ones, will give you full sight.” So the problem had a name and solution — I just needed a lens in the right place to see. And to see the world around me would be a dream come true.
But surgery again? I was down to pain meds every six hours, a major improvement, but still… From my back surgery I learned that suffering in silence didn’t have to be a way of life and that the medical world did hold answers. So I started doing the research. The doctor in Cleveland said he wouldn’t touch a Marfan eye for fear of retinal detachment, another Marfan delight. The doctor in Florida said he thought I should go to someone closer to home. In Baltimore they said it would be simple; in New York that it would be complicated. In Philadelphia they said the lens could be replaced by a stitched-in lens — they could give me 24/7 sight. Who to trust? Who to believe? Who to choose?
At four months’ post-surgery, I switched to nerve medication instead of pain meds. At six, I graduated from physical therapy… At eight, I went under the knife for the second time in my life. I was risking my last bit of sight, but I grasped at the chance to take down the last barrier between me and independence. Going blind wasn’t an option. This had to work.
To be continued…
(Originally featured in Family First, Issue 514)
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