By Chris Coates, HOD Founder and Board President
Are you getting ready to mute me from your life because you are sick and tired of hearing about rare disease, brains, patient organizations, or any combination of these? Can you imagine how sick and tired I am of talking about it? Do you know what is worse than reading about these things and talking about them? Living with a rare disease. I used to forget for a moment when I woke up for the day that this is my life now. Unfortunately, I don’t have that luxury anymore. I no longer have the option to pause the constant reminders of my condition. They are now ever-present in my subconscious. Every moment of my existence is soaked in rare, incurable, degenerating, brain disease and the advocacy that comes with it.
This life isn’t quite what I had thought it would be. Things have changed more dramatically than i would like to admit. I never dreamed that I would be pausing my career at age 46. I imagined that I would be in the mix for future leadership roles in the company that I work for. Basically, I was positive that the world was at my beck and call. I assumed a future full of a long work life, and a short retirement. In an instant, it was all taken from my imagination and replaced with a long life ahead of me full of advocacy. A different kind of work. A life that will be filled with deep, sincere joy, as well as times of depression, sadness ,and setbacks, walkers, canes and wheelchairs. The opportunity for me to run a marathon has been erased from the realm of possibility for me. This new opportunity is something else, I tell you.
New calling = advocacy
Instead, I get to be part of a gigantic community of people who receive a diagnosis that has no treatment or cure. I get to listen to others who share my plight. I have the honor of knowing that I am helping to move my own community forward. We’re edging ever closer to figuring out what causes this finicky little gremlin on my brainstem to make its presence known. Why does this happen to some, but not all? We have so much to learn and I am eager. These are very exciting times indeed.
I know you must have burnout and are getting so tired of me using my advocacy platform to ask you to help the HOD and Rare community at large. Please believe me when I tell you that I am sick of it too. I am so tired of feeling dizzy all the time. I’m tired of my people having to keep an eye on me, so I don’t get lost, or fall and hurt myself. I would love to not have to ask myself if anything new that I am feeling is a new symptom or if it’s just my body getting older. I’m sincerely over the fact that I now close one of my eyes a lot, just to have a moment without double vision. I wish I didn’t have to think about the tension and pain all over my body and just keep going because I have no other options available to me.
So, how can you help?
So, here I am with another shameless ask. Sorry, not sorry. Donate today using our Givebutter campaign button on the lower right side of your screen right now, our Facebook fundraiser, or get yourself some cool merch to support HODA and out advocacy efforts!
No cash to spare? That’s no problem at all. We need loads of help and there are tons of ways to get involved and lighten our advocacy load here at HODA. Reach out at contactus@hodassoc.org to learn how you can help us short or long term today!
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