It hits sometimes when you’ve finally absorbed in a moment of normal, that you look around realizing just how unrealistic this is for you daily. And yet, you can’t imagine not experiencing the hardships, the multiple medications a day, the ache of not having answers from even the experts because it is that in itself that makes you humbly appreciate everything you have.
For the over 7,000 listed rare diagnoses and more than 300 million experiencing a rare disease, every day of their life they face the feeling of tragedy and gratitude. We’re acronyms. Our medications are specially mixed, our reactions to basic sickness are digressive, and not even our family may understand what we’re going through.
As a human, we seek the need to relate to someone in our moments of high and low: “He asked me,” “I miss her,” “Late for work..uhh.” But then being rare adds in moments when I wonder if there is anyone with a story like mine closer than Australia? Where we catch ourselves thinking “It could be worse. I can face this but would never be able to handle that.” But more than anything: isn’t that who we all are: Rare?
It may not make sense why I shop online for wedge sneakers late into the night, until you realize it’s that or I’ll research once more the most recent trial medications to reduce my boy’s symptoms. Why doing something, creating something so much more than me, striving always to do more for others, becomes an obsession. That making a current medication schedule when going away for one night breaks me, because my reality is hard to face on paper. It’s not fun to write or say, so I do it as fast as you can. “Rip the band aid,” I say for the billionth time.
You may read this and pause wondering if you know one of the 7,000. You do. I’m sure you watched one of the 2 million videos honoring ALS. From there, you may even have seen another diagnosis honored such asSMA, the infant form of ALS. It’s humbling, powerful and inspiring to witness. But above all, it’s making a difference.
With over 28 million people getting involved in the Ice Bucket Challenge and 1 in every 10 affected with a rare disease, being a voice is as simple as that 60 second video. You don’t have to remember what color ribbon to wear. Grab the entire ice bucket and represent rare genes as a whole. Advocate for something that impacts more people than cancer and aids combined.
On the last day of February, leap year or not, wear jeans. Fill so many with dreams, joy, feeling like part of a family and above all: HOPE. (Read more about Rare Disease Day)