In My Skin
By Megan Gallagher
If you were to spend a day in my skin, you’d wish you could claw your way out. We as EB survivors will never be able to accurately describe the true nature of the disorder we live with day in and day out. But here is my story, my attempt at portraying the better person I’ve become while enduring such a painful, near numbing challenge.
At first I tried to write a whirling narrative that causes stomach cramping laughter, but the truth is there is nothing funny about EB. EB would never be shown on America’s Funniest Home Videos. It would also never be the topic of a comedic skit or the punch line of a joke. There have been several situations, although infrequent, in which a smile has crept across my face while experiencing an EB related event.
The things that are funny about EB are the things only an EB survivor and their immediate family can chuckle about. I find myself repeatedly exiting the bathroom and not being able to button, or even pull up my own pants because my hands have been gauzed and resemble oven mitts. This embarrassing moment for a teenager asking her mom to tug up her pants, zip and button them after using the bathroom could very well end in tears but my mom and I have taken a different route and have come to laugh about it. We laugh about clothes I could never wear and say they look silly anyway. My sister and I have made jokes about quarter sized clusters of blisters that spread across my neck and slightly resemble an out of control hickey. But are these things really, truly funny?
My dad took to researching potential remedies for blistered skin as soon as I was born. He wanted to stop the pain like an exterminator wiping out termites. One evening after dinner, after all the plates were taken away, my five siblings scurried in different directions: to the TV, to the computer, to the massive pile of legos we treasured. I however, was lifted up and seated on the countertop, for which my mother always scolded us . As usual I was given a different treatment than my siblings; I was able to break the rules quite often. With my twiggy legs dangling over the edge, I watched my dad grab the Kitchen Aid food processor my mom only brought out to make Thanksgiving Day stuffing. He pulled out a bag of carrots that would have fed fifty rabbits, dumped them into the Kitchen Aid and began to puree them. The racket of carrots being chopped to bits and churned into a thick mush drew my brothers and sister back to the kitchen.
“This will work Meg.” My dad was the only person who ever called me Meg. He set the bowl of orange paste next to me and lifted my feet into the mixture. The surprisingly cold concoction surprised my six year old body and the goo slid between my tortured toes.
“People who do Karate soak their hands in this to make their skin strong enough to break boards,” my dad attempted to explain the logic behind the carrot creation to everyone in the kitchen. A glimmer of hope sailed through my thoughts. And just like a shooting star, the hope disappeared into the dark abyss. I sat on the kitchen counter with my feet soaking until it was nearly bedtime. I knew it then and I know it now, my skin will never be strong enough to break boards. That night, and for several days after, my orange stained and still blistered feet smelled like vegetables.
Fifteen years later, he’s still sending me care packages of friction reducing ointments and hyperlinks to pages of “breathable” shoes and special socks. The truth is I have an entire basket of creams that have been used once and a pile of mismatched textured socks.
We’ve tried it all. We’ve read techniques online about using baby powder and taking salt baths. There is no cure for EB, as we’ve known from the beginning, but we hold onto the hope that we’ll come across something that will be life altering and allow us to escape from this fragile shell.
Maybe it’s not a cure, but there is an escape mechanism that’s been here all along: imagination.
As a seven year old I wore astronaut boots and skimmed the Milky Way one day in August. I grazed the shiny stars and floated in orbit around the sun. I hopped around in my spacesuit dodging asteroids and jumping from planet to planet fighting aliens. From the outside I’m sure a tiny girl running through the sprinkler with tube socks on didn’t look like an intergalactic space mission. The tube socks kept my healing wounds dirt and grass free. The socks got weighed down and become spongy when filled with water, feeling exactly like how I imagine moonboots would feel. My brothers on the slip n’ slide and my neighbors chasing each other with squirt guns never told me they were jealous, but I know those mere land people wanted astronaut boots as well.
In first grade we had gym class at a park down the street from the school. The small town public elementary school had provided me with a wagon that the teacher would pull across the street so that I didn’t have to walk so far. This wasn’t just any wagon, as soon as the wheels started turning, it transformed into a carriage fit only for a princess. I opened the carriage door and took the small step inside, flattening my gorgeous ball gown around me. My stunning white horses would parade me across the street while my fellow peasants and servants marched behind.
On our first trip to Disney World I was eight years old, too old to be carried on my dad’s shoulders. I probably received seventy five percent more riding time high in the sky than my three little brothers, but they understood that I was delicate and easily injured. As soon as I started walking slow and lagging behind the group my dad would bend down and I’d climb aboard his shoulders. I would miss out on all the rides and running up to see the characters but I was enjoying a jungle excursion. Atop an elephant I was able to tower above all the other jungle creatures and see the world from the view of a tree. With the sun beating down my elephant grew tired and slowed in pace. He stopped at a watering hole, quenched his thirst, and continued on following the pack.
There have been numerous mornings where on the way from my bed to the bathroom I morph into a firewalker. There’s a bed of burning hot coals and I teeter across clenching my jaw, fighting to contain a scream that rises from deep within. The glowing coals seem to stretch forever and I finally make it to the end only to be left with throbbing pain. And then just like a true firewalker puts on a mystifying show for all those watching in wonder, I muster up the ability to stand up, walk out and start my day.
Imagination sure worked when I was young. You could be anything you wanted and the fact that you were treated differently was welcoming and exciting rather than humiliating and degrading, as it had become when I became a teenager.
There was a point in time when the pain was so great that pretending just didn’t cut it anymore. I don’t know if it was because I was growing up and it became harder to transform into a completely different character or if I was just being slowly worn down. In order to regain my sense of control I dedicated my time to playing soccer. Yes, I would run miles upon miles on hot days in tight cleats tearing my feet to shreds in order to prove that I was stronger than the disorder.
I was able to join travel teams and compete across state lines and later in life across country borders and oceans to prove that EB would not stop me. Of course there were many emotional breakdowns and times I thought I couldn’t push through. One scorching hot summer I was fortunate enough to be picked to play on a travel team representing the state of Illinois. We flew to California and began our eight day tournament in the burning hot sun. My skin lasted only hours on the first day. I spent the rest of the tournament playing twenty minutes here and there and staying in the shade, taking salt baths and wrapping body parts in gauze. Each day I tied my cleats tighter and tighter in an attempt to reduce friction which became an attempt to cut off the blood supply so that I couldn’t feel anything anymore. I took a dose of Tylenol every hour until I was drugged past the recommended dosage. It got to the point where I couldn’t handle it anymore. At halftime the team jogged to a shaded area while I limped across the field to the stands where my family sat. My dad saw me coming and walked briskly across the field to meet me, knowing there was something wrong.
“Dad,” I began to speak and my voice trembled. “Dad,” at this point the words scratched my throat on the way up and my eyes sizzled as tears collected in the corners. “Dad, I can’t do it anymore. I hurt!”
“I know Meg, I know.” My dad took me in his arms and held my head against his chest. The echo of his steady heartbeat matched my deep breathing and my sweaty face dove into the yellow of his polo. With his arms around me, I just let go—tears streamed down my face and I let out loud, choking sobs. My dad turned so that my team couldn’t see me crying, so that they couldn’t see that I had broken down. He ran his hand down the back of my head over my double French braids, cradling me and swaying back and forth and then he whispered in my ear “you’re my hero.”
A day in my skin would be one of the worst days of your life. A day in my skin would not do justice to the experiences an EB survivor deals with. But you know—I’m glad I’m in this skin. I was given the chance to overcome this devastating disorder. I’m glad I was picked. In the process of testing myself to be a better person and deal with a personal challenge, I became a hero – a hero to people I’ve always considered my own heroes: my parents. I love you Mom and Dad.
Copyright © 2017 EBsurvivors.org, Inc. All rights reserved.