My Thoughts on the WALK to End Hydrocehalus Virtual Event
- trixie_moon
- Sep 26, 2020
- 2 min read
I just finished watching the Hydrocephalus Association’s celebration of the WALK to End Hydrocephalus and it just hit me that...wow, suffering really isn’t a competition.
I have had seven brain surgeries in sixteen and a half years and I know people who have had that many surgeries in a MONTH.
But it’s not a competition. Just because I may not have had as many surgeries doesn’t mean it hasn’t significantly affected me...I mean, I literally do not have peripheral vision on my left side and to this day (seven years after my last surgery), I still have balance issues.
It’s a miracle I’m alive. I should cherish that, and I do, every single day.
I’m a #HydroWarrior for a reason. And for that same reason, I want a cure. I want to be able to not panic every single time I get a headache because it’s my only symptom of a shunt malfunction, I want to be able to do things that everyone else can, like play volleyball. I want to be able to move to the middle of nowhere and be happy but I know, I KNOW I will never get that because I know myself. And I know the way hydrocephalus affects me.
IF something goes wrong, it goes wrong fast. The time from me getting the worst headache of my life and ending up in the hospital, not breathing? Less than twenty-four hours. I know the risks. I know what I need to do to stay safe.
So that’s why I say, you know what? I’m tired. I want there to be a cure and I want there to be a cure NOW.
So I say #nomoreBS. Join me in support of an amazing fellow teenager with hydrocephalus, Jayne Crouthamel, as she swims to end hydrocephalus.
~ Leyra