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I’m Not Afraid of Dying of My Illness. I’m Afraid of Not Living.

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On Sunday, it will be exactly five years and eight months after we found out I had cancer. Two months after they did surgery and more surgery, they declared my cancer in remission. On Sunday, after five years of no reoccurrence, I will be declared cured.

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

Unless I develop another type of cancer in the next week, I’m reaching a huge milestone. Ever since learning I had cancer — and now knowing I have a type of Ehlers-Danlos syndrome that can cause death — I decided to live my life a little differently.

When I told people I had cancer, many asked if I was scared. The same question comes up when they find out I don’t have the less dangerous form of Ehlers-Danlos Syndrome.

I’m not afraid of dying. Yes, it used to terrify me, but I’m at a point in my journey where it doesn’t anymore.

Every single time I have a splitting headache or chest pain yes, one of the first thoughts I have is, “Whelp, here’s the fatal aneurysm.” That thought is usually fleeting, and if there is a real concern I go to the ER.

As of yet it hasn’t been an aneurysm or my cancer coming back.

I had to shift my thinking into accepting I could go at any minute. Random violence is so much more prevalent, so no one is ever really safe.

I might just be aware of my own mortality than your average 26-year-old. I don’t think many of my friends have living wills and advanced directives.

I no longer fear death. Yeah it would suck to die in the prime of life, but I’m not afraid.

I’m terrified of not living though. I’m not talking about dying. I’m talking about not putting myself out there, not trying new things and not making myself uncomfortable.

I want to make the most of every single day.

I want to make a difference in the lives of those around me.

I want to experience all life has to offer.

If I sit in my bed (because I can’t get hurt) it’s safe, and I feel sorry for myself, then I’m not really living.

I want to meet new people and continue to learn.

I learned in order to truly live, you have to be willing to throw yourself into what you are doing 100 percent, even if it’s uncomfortable. Being a passive observer while life passes me by is more terrifying than having my cancer come back or dying from an aneurysm.

This week is huge — I’m cancer free. I officially survived!

Every day I wake up I also celebrate the fact I have another day to live, and I soak up every minute of it.

Thinkstock photo by Credit: RossHelen

Originally published: October 11, 2017
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