Retrospective Lily

This morning, I put on my socks by myself (instead of asking for help).

It’s tough because I have Friedreich’s Ataxia, a neurological condition that impairs my balance, coordination, speech, energy level, hearing, etc.

I planted my feet firmly on the foot pedal of my electric wheelchair, then I bent over to put a sock on my right foot. It was a far stretch, and I struggled to maintain my position in the chair as my chin rested against my shin.

I sat up to take a few deep breaths as my heart pounded from the exertion. FA patients usually have cardiomyopathy, weakening or thickening of the heart.

That’s the part that’s scary to me.

To my young, emotionally immature mind, being a wheelchair user was the worst imaginable fate. Now, I don’t really care about that. Because I found out you can be pretty and funny and sit courtside at basketball games and take pictures in front of waterfalls – even in a chair.

The other symptoms of FA are annoying to say the least, but heart defects are potentially fatal.

I decided to attempt a different method for the left foot – I’ll squeeze my abs and pull my foot to my chest, then grab my left leg and cross it over my right knee, then put on the sock.

This wasn’t necessarily easier, since I still teetered back and forth in my chair. It certainly wasn’t pretty. But both socks were on now! My usually-frozen feet felt a little better.

~

For the last 1.5 years, I’ve been taking SkyClarys, the first FDA-approved treatment for Friedreich’s Ataxia. I’ve almost totally healed from last year’s ankle injury. I’m now riding an exercise bike a few days a week for an average of 0.25-0.5 miles in 15-20 minutes!

On the flip side, I am experiencing some back pain lately. I may just sit on the couch and use a heating pad after I write this.

Every moment of every day, I choose to see the glass as half full or half empty.

Do I count the blessings I have or the abilities I lack?

Do I resent the fact I need help or appreciate the people in my corner?

Do I focus on the progress or the pain?

Do I feel sorry for myself and let bitterness eat me alive or feel JOYFUL because I am still alive, and there is so much to live for?

Let us all choose gratitude today. ♥