Retrospective Lily

There is a lot of doom and gloom around the idea of turning 30, presented in an odd joking-yet-not-really way.

Ha, you’re not a little kid anymore! Ha, your youth is dead!

As a person with a progressive disease (Friedreich’s Ataxia) that causes hypertrophic cardiomyopathy aka potentially fatal heart issues, my perspective varies tremendously from most young people’s; understandably, they take for granted the long life ahead of them.

Me? I’m not upset I’ll be 30. I’m happy just to “be.”

Whatever my mobility situation, whatever circumstances I deal with – if I’m alive and breathing, I’m blessed.

When discussing the new medicine Skyclarys with friends and family members, they often comment, I’d love to see you walking around again! So would I! But, the main objective for me is to keep my thick ol’ heart beating. Not to mention other FA symptoms I would like to improve, such as fatigue and terrible hand-eye coordination.

People tend to assume the worst thing about my disability is NOT being able to walk. I’m not trying to be obtuse; yes, realistically, that part sucks. But my other symptoms make life harder, too. And, ultimately, I’d settle for spending all my days in a chair – just give me plenty of days, Lord!

Welcome to a new decade of self-discovery and fabulousness! More importantly, hello to another decade of “being.”