Join The Conversation With Mishpacha's Weekly Newsletter



Whispers: Chapter 14

Shira Hart

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

Thursday, October 27, 2016

Bed. 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 roller coaster — 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 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 T-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 slumped onto 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?

Related Stories

A Window of One’s Own

Libi Astaire

Alas, after a while my window experienced a fate similar to most toys. No longer new, I barely gave ...

Whispers: Chapter 13

Shira Hart

I was gently and not so gently woken and reminded that if I wanted to continue living, I had to make...

AdviceLine: We Disagree on Chinuch

Bassi Gruen

My husband and I have very different parenting styles. I believe in the 80/20 approach; he believes ...

Share this page with a friend. Fill in the information below, and we'll email your friend a link to this page on your behalf.

Your name
Your email address
You friend's name
Your friend's email address
Please type the characters you see in the image into the box provided.
CAPTCHA
Message


MM217
 
Evolution vs. Revolution
Shoshana Friedman I call it the “what happened to my magazine?” response
Up, Up, and Away
Rabbi Moshe Grylak What a fraught subject Eretz Yisrael is, to this day
Where Do You Come From?
Yonoson Rosenblum Could they be IDF officers with no Jewish knowledge?
Heaven Help Us
Eytan Kobre Writing about anti-Semitism should rouse, not soothe
Work/Life Solutions with Chedva Kleinhandler
Moe Mernick “Failures are our compass to success”
An Un-Scientific Survey
Rabbi Emanuel Feldman Are Jerusalemites unfriendly? Not necessarily
Out of Anger
Jacob L. Freedman How Angry Lawyer was finally able to calm down
5 Things You Didn’t Know about…Yitzy Bald
Riki Goldstein He composed his first melody at eight years old
When the Floodgates of Song Open, You’re Never Too Old
Riki Goldstein Chazzan Pinchas Wolf was unknown until three years ago
Who Helped Advance These Popular Entertainers?
Riki Goldstein Unsung deeds that boosted performers into the limelight
Your Task? Ask
Faigy Peritzman A tangible legacy I want to pass on to my children
Are You There?
Sarah Chana Radcliffe Emotional withdrawal makes others feel lonely, abandoned
A Peace of a Whole
Rebbetzin Debbie Greenblatt Love shalom more than you love being right
Seminary Applications
Rabbi Zecharya Greenwald, as told to Ariella Schiller It’s just as hard for seminaries to reject you