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Why I Celebrate My Life With Ehlers-Danlos Syndrome

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The first time I looked death in the eye, I was only 13. My brain stem was compressed due to my cervical cranial instability. We found a specialist and I got the surgery I needed; my life was saved, for the moment.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

The second time I looked death in the eye, I was 15 years old. My neck was unstable at C2-C5 and at C4 I had a complete dislocation (that somehow didn’t paralyze me). I got another cervical fusion and my life was saved, for the moment.

The third and most recent time I looked death in the eye, I was 19 and living in a foreign country. The screws from my previous fusion suddenly broke and every day, as those screws migrated closer to my esophagus I moved closer to my grave. There was a surgery that could fix me, but they weren’t sure if I would make it through surgery or even if I’d survive the wait.

I felt myself in a position I had been in before, except this time more extreme. I could feel death looming over my shoulder and every time my neck would crack or pop I’d cringe, hoping the screws wouldn’t pierce my esophagus. Knowing that it was very possible I wouldn’t wake up one morning, I found that more than ever before, all I wanted to do was live. I found myself questioning how I had been living my life and I realized I hadn’t been truly living, but instead I had been existing. See, the difference between living and existing is that when you live, you give life everything you have, and when you exist, you give life everything you want to give. I hadn’t been putting my whole self into living, and now that life was about to be taken away from me, I saw this clearer than I otherwise ever could have.

I am not affiliated with any religion, but I was raised in a Catholic household. When I was 7, I went to confession during Sunday school. I confessed to something silly and the whole experience was meaningless. That being said, I do believe in the general idea of confession. I think that once we admit to our mistakes and take responsibility for them, we have opened the door to learn from those mistakes.

I wanted to apologize to myself and to God for the way I had been living my life, so for the first time in 12 years, I went to confession. When all was said and done and the Father asked me, “What would you like to confess?”

I took a deep breath and I broke out in tears. “I have been sick my whole life and instead of accepting it and moving on, I let it eat away at me. I used to look at the other kids on the playground and cry because I wanted to have strong legs like them. I was always jealous of everyone I knew because they didn’t have to go through what I went through. I spent my whole life being jealous and unhappy with my life, and now that I might die, I realize that I should have only been thankful for what I have because life itself is a gift from God.” Tears ran, streaming down my face because I had told the truth; it was the hardest truth that I have ever spoken.

That day, I opened the door to a new life. I went for my surgery and I had an amazing recovery. The hardest part about chronic illness is that it will never go away. You can be unhappy about it, you can cry about it, you can be jealous of every healthy person in the world, but that won’t make it go away. Since my surgery, I have lived every day as what it is: a gift. I looked death in the eye, but I survived and that is something to celebrate.

I am writing this blog because yesterday was my birthday, the first birthday since the surgery. Normally I don’t celebrate my birthday, but this year I did and it was amazing. I am so very thankful for this life and everyone in it. So despite all my chronic illnesses and the fact that I’m recovering from a surgery I had just three weeks ago, I believe myself to be the luckiest girl alive. Because being alive is such a reason to celebrate.

Getty image by Simon Lehmann.

Originally published: January 1, 2020
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