By Chris Coates, HOD Founder and Board President
I recently celebrated my 46th birthday. A lot has happened, good and bad and indifferent inside of these 46 years. I have experienced a lot of anxiety around my birthday for almost all my adult life. I can’t truly pinpoint the moment that started this marathon race through these years, why I get so uptight about my birthday, other than I know that it has absolutely nothing to do with aging. Once I hit 18, I stopped keeping track of how old I am. Generally, when I am asked my age, I must do the math in my head. What is 2022 minus 1976? I have somehow always believed that this keeps my mind sharp.
Last year on my birthday, I decided that it was time to start working through the anxiety, and truly celebrating. My sister and brother-in-law hosted a very small gathering of our two families and our other sister. We ate tacos. I bought myself a birthday tiara to wear. And I cried. More than once. I had been diagnosed with Hypertrophic Olivary Degeneration just a few months before. And somehow, after receiving a relatively unknown degenerative brain disease, birthdays hit a little differently now.
Rare disease can make celebrating a birthday hard
As I reflect with curiosity, I still can’t see completely what happened to make me dread September twelfth every year. Maybe it is the persistent reminder that people died horrible, tragic deaths on September eleventh. Maybe it is because I am reminded of my High School boy friend’s birthday on September 24th, knowing he will never know what 46 feels like, since he succumbed to Hodgkin’s Disease at age 17.
What I do know is that the threads of trauma can be intertwined with seemingly normal events that someone else wouldn’t perceive in the same way that I did. I will often shame myself for being so melancholy during Virgo season. “I should be grateful for my life!” “Why am I so strange?” It is a sincerely odd sensation to be surrounded by people who want to celebrate you, and yet, that very desire couldn’t be further from my reach. It is not something that I wear with pride or carry false humility for.
HODA came from the ashes, like a phoenix
Last year, my decision to face the anxiety head on was the right choice for me. I had my Cavernous Malformation removed from my brain just seven months prior. I survived brain surgery and had a fresh diagnosis that I really didn’t want to have. It would be just a short month later that the birth of the Hypertrophic Olivary Degeneration Association would come to pass.
I know that out of the ashes of all the anxiety and sorrow and fear arose a beautiful patient organization, filled with love, hope, and community. Although I may not love celebrating my own birth, I can definitely say I know I will love celebrating and honoring HODA’s first birthday with you all. Perhaps the Phoenix rising from my ashes will be just the remedy I need to allow myself to celebrate my own birth this year, and every year from here forward.
And how incredible is it that we celebrate the first birthday of HODA and our very first National Awareness Day at the same time!? Tag us in your social posts with the #HODHeros all day long so we can re-post and share with the rest of this small but mighty community!
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