How a 7-Year-Old Convinced Me I Was Going To Be OK


She was just a little girl, but I saw myself in her. I saw myself suffer as she suffered. I saw myself hold on because she held on. I saw myself become hopeful because she was hopeful. I saw myself smile because she smiled. I saw her save me through her bravery.

Eden has Ehlers-Danlos syndrome (EDS), the same genetic illness as I have. It’s rare; Eden is one of the only people I know with my condition. Ironically, our skulls decided to fall on top of our brain stems at the same time. A week after doctors first found out I had brain-stem compression, I heard Eden was getting surgery for the same problem. To the average person, this coincidence may seem strange. It may also seem strange that we had the same doctors and needed the same surgery. But anyone with our condition would understand. With EDS, our problems are predictable. But it’s still like a roller coaster. You get in line for the ride and then when you go upside down, you’re still shocked and cannot stop yourself from screaming. I’d given up any hope that this ride would come to an end. The doctors told me,“Well if we fix you now, you’ll just be back on the OR table in a month. You will still fall over. We can only stop it from getting worse. We cannot reverse the damage.”

I didn’t want to see any more doctors; I didn’t not want to even try. I was scared, and I didn’t know what to do. Eden and I were in the same situation — except she was 7 and I was 13. I’d given up, and she had not. I’d given up smiling, I’d given up laughing, I’d given up living.

Eden saved my life. Because she made me want to fight again.

FB_IMG_1427754841104

The day I visited her in the hospital, we talked; she smiled and laughed. She held my hand and said, “You will be OK because I’m OK.” I looked into her eyes and saw nothing but strength. I saw a little girl with her own problems who still cared about others. I saw a real superhero.

One of the biggest challenges in having a chronic illness is that many people cannot even begin to understand what it’s like. I knew I could die at any moment, I knew I could become paralyzed. I felt like the world didn’t care. That day, Eden showed me you only needed the little things. In many way, she made me feel like a fool. I’d been worrying about how other people saw my struggles and their judgments. Eden proved to me that none of that matters. The only thing that mattered was that we had each other. The only thing that mattered was that we could hold each other’s hands.

The screws in my brain, the surgeon, the doctors, the nurses, they all take credit for saving my life. But in reality, Eden is the one who saved me.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.


Find this story helpful? Share it with someone you care about.


Related to Ehlers-Danlos Syndrome

To the Only Person Who Believed Me When I Said I Was Sick

Weddings — they’re beautiful to witness. How would I describe a wedding? A wonderful new beginning. The joining together of two paths. Two lives and situations becoming one. This past weekend, I got to go to a wedding. Not just any wedding. The wedding of someone important to me, the wedding of my second grade teacher, Amy, or, [...]

New York Islanders Prove Some Things Are More Important Than Rivalries

Karen Richards woke up after brain surgery groggy, tired and surrounded by hockey players. The 15-year-old from Boston is a diehard Bruins fan. But on Thursday, March 12, five members of the New York Islanders stood around her. Karen didn’t mind. Photo via Karen Richards The teen lives with a roster of diagnoses including Ehlers-Danlos syndrome, [...]

Why I Won't Let My Heritable Disorder Define Me or My Kids

To the diagnosis that changed my life but doesn’t define me: When I first heard your name and started to learn about you, I actually felt a twinge of excitement. That’s right, excitement. For more than six years, I had chronic and escalating pain in my joints, experiencing numerous dislocations and subluxations – literally from [...]

Artist Takes Glamour Shots to Combat Stigma of Chronic Illness

Karolyn Gehrig, a Los Angeles-based artist, is the inspiring woman behind the hashtag #HospitalGlam. #HospitalGlam is a campaign Gehrig started to celebrate her body in the midst of the pain and uncertainty of her chronic illness. Via Instagram In 2003, Gehrig was diagnosed with Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder characterized by joint problems [...]