Retrospective Lily

This morning, I am enjoying a rare moment of solitude. A disabled person like me is almost always surrounded by caretakers, and it can be suffocating.*

Some days I am overcome by envy of others, by self-pity, by “wishing.” I wish I could move around with ease and freedom. I wish I could go for a solo walk on the beach. I wish I didn’t have to ask for help with menial tasks. I wish I had a lot more say in the way my life turned out. Wishing things were different is even more suffocating than the lack of privacy.

Sometimes the only thing keeping me afloat is sheer will power. Even when a cloud of anguish fogs up my mind, will power – glowing faintly in the distance – presses me onward. I have also realized many times over the power of small serotonin hits: New leaves unfurling on my houseplants. A 30-minute ride on my exercise bike. An hour spent writing. A stroll in the park. Hugs from loved ones at church. I credit myself with having good mental health, but really, I think I am a workout and a dose of sunshine away from Crazy Town.

Something about writing hits different for me. Everything just flows out, all the words that are hard to articulate otherwise, things that are too heart-wrenching or too uncomfortable to say aloud. Writing gives me a voice. Even on the days I wish things were different, the days when I count what I LACK instead of what I HAVE, at least I have that. Using my voice reminds me who I am and what I’m capable of overcoming.

*Of course I’m grateful for people in my life who help me. I know I’m blessed. I am just being real.

More about my disability, Friedreich’s Ataxia: curefa.org