A couple weeks ago, we received an email from Louis DeLauro, a middle school teacher at the Grey Nun Academy in Yardley, Pennsylvania. He wrote:
“Isabella Yim is 13 years old and is a star in my Language Arts Classroom. All of us found her personal EDS story very moving. In her story, she clearly articulates how important it is for children who feel isolated to hear stories about others living with the same challenges… I have a story in Chicken Soup for the Soul and quite frankly Isabella’s story is better than my own. Please consider it for publication.”
After reading it, we agree: Kitty is very talented. This is a powerful, beautifully written story about learning to come to terms with a chronic condition. With the permission of Isabella’s mother, Folks is extremely proud to publish it.
Finding out something about yourself that you did not know before is terrifying. Especially if it is a disease. One that you can not get rid of and have to live with for the rest of your life.
The hardest thing I ever had to learn about myself was that I had EDS (Hypermobile Ehlers Danlos). It was horrifying for a little girl to hear the words: “You can not play on the monkey bars anymore.” I remember it like it was yesterday, having so much of my childhood ripped away and replaced with something else. I hate that memory.
When I found out I had EDS, I was only seven years old. I was at the doctor’s office. I remember getting pricked and poked with needles and other weird tools, and then the doctor saying some really big words to my mom. I was so confused. Why was no one telling me anything? What does that chart mean? What is going on? Questions fluttered around my brain as the doctor spit large words that I was too young to understand.
Then before I knew it, my mom held my hand and we walked back to the car. We drove and drove until finally, we were home. I was still confused.
We walked in and she sat me down in her room on her bed. She explained slowly. “You have EDS.”
I asked, “What is that?”
“It’s a disease,” she responded.
I did not know much about things like diseases, but what I did know was that diseases equaled gross. I had the picture in my mind that I had some infectious disease that was going to kill me and infect everything I touched.
Turns out that is not what EDS is.
My mom told me:”EDS is something that affects your joints and your blood.”
“Your joints are loose and will dislocate easily. Your blood vessels are like a balloon, they need a lot of water. Most people have blood vessels like a hose. They fill up slightly but don’t expand a lot.”
I stopped asking questions after that. I was sad. I didn’t want to be different from my friends.
I have a memory of when I was nine. I asked my mom: “When will I be cured?” She then explained that EDS is not something you can cure. It is like the color of your skin: you can slightly alter it but never fully change it.
I choked up. “Why, why isn’t there a cure?” I said. “Why would God give me this disease?”
“Because God knew you could handle it,” my mom replied.
I then proceeded to cry. That didn’t comfort me. I still hoped and prayed for a cure. I just did not understand why this burden was placed upon me.
I felt that way until I turned eleven.
One day, I was scanning YouTube and found a video: 26-year-old model wears her wrinkles with pride. Interested in the title I clicked on it. It was a short five-minute documentary.
As I watched it, I realized that the model had EDS. I rewatched the documentary again. I had never seen anyone with EDS who was famous. I’d never even really realized there were other people with EDS like me. I then typed ‘EDS’ into Google. What came up amazed me. Thousands of people with their stories of EDS sharing them for people like me. Titles like: “EDS the Invisible Disease” and “My EDS Story.”
My disease was not a burden. It was an inspiration.
That was the day I realized EDS was nothing to be ashamed of. For so many other people with EDS, their condition became something they embraced. If they could do it, so could I. My disease was not a burden. It was an inspiration.
Once I realized that life got a little better for me. I still believe EDS is not a burden. I now co-exist with it. I am living my life happily. And I am no longer alone.