I don’t talk about my disease much when writing these blogs. That isn’t because I’m trying to ignore it, it’s because I don’t want it to be an excuse for my eventual success.
This is a difficult perspective for me to explain, but I’ll try my best.
I don’t want to be known for my disease. I don’t want people to look at me and feel inspired simply because I have a disease and have been able to overcome a lot of the obstacles involved. I don’t want to be known as the guy who says things like “My disease taught me *blank*”.
This isn’t to say my disease hasn’t been responsible for forming a lot of my perspectives and habits, it absolutely has. I just don’t want all my ideas to be connected to Hurler-Scheie.
I want to feel like my ideas are worthy of recognition and deserve deeper consideration – not because I have this rare “struggle” and therefore I have something to teach.
We all fight our own battles and try our best to navigate life. Being born with Hurler-Scheie is mine. For others it’s anxiety, depression, eating disorders, autoimmune deficiencies, the list goes on and on.
My disease is just something I have. It’s another part of me. Something I have to keep in mind when making decisions. I don’t want it to be the main focus. When I’m asked to speak in front of a crowd, I want to share my perspectives, inspire people, and flip their mindset, then after the fact say “Oh and by the way, I have a disease.” or not mention it at all.
Having it be the other way around doesn’t drive me. “I have Hurler-Scheie, therefore this is how I think.” is not how I want my blogs, podcasts, and Tik Toks to start.
To make it clear, this isn’t a diss against those who speak, build a brand, and inspire countless people through sharing their life story as it surrounds their disease. I’m proud of people who have the courage to share those stories because it’s not easy.
Personally, I love the idea of inspiring people with my perspectives and actions and then having them discover I have a disease later on.
As I write this, I’m realizing how difficult it is to put into words. I don’t want to say it feels like they’re pitying me, because that seems harsh. Honestly though, I think that’s kinda it.
When the disease comes first, then they decide to listen, it feels gross. If the listening comes first, then the disease, it feels good.
Let’s leave it at that for now.
May 11, 2022
