Retrospective Lily

Life would be easier if things never changed, huh? I don’t think I would wish for it to be that way, because I can look back and appreciate how a lot in my life is better than it once was. But with a progressive disability, I can’t help thinking of the past a little wistfully. Remember when I could do XYZ? If only I knew how blessed I was!

Since starting this blog in 2017 and starting to share about my condition, Friedreich’s Ataxia, I’ve maintained a lot of abilities and lost some, too.

Recently, I tore a ligament in my ankle, or so the doctor suspects. As I type this, I’m sporting a clunky boot that’ll take the place of my left shoe for at least another month.

FA, essentially a loss of balance and coordination, is hard enough to manage on its own. With any knee or ankle issue, it reallyyy ramps up. Hobbling around isn’t so bad if you can balance yourself, but if not?

Shoo-wee.

Sometimes, my right knee flares up and gets so stiff I can’t put weight on it (due to an old knee injury). The days when I’ve had the ankle issue on my left leg and the knee issue on my right leg have been ROUGH.

There’ve been many times lately when I felt defeated – like no matter how hard I try, things will only get worse. But I know that’s not actually true.

Yes, there will be disability progression I can’t prevent. But giving up is the worst thing I could do for my mind, body, and spirit. I have to keep exercising and maintaining my physical and mental strength.

Part of maintaining my mental strength is shifting my mindset from one of pity & lacking to one of acceptance & gratitude.

Rather than focusing on what I cannot do, appreciate what I can do. Accept that some procedures may need to adapt as my abilities change (ex: getting in and out of the shower, transferring in and out of a car). Rather than dwelling in self-pity because things are changing, strategize on how to keep my daily procedures safe, and utilize whatever I can still do in those procedures.

As I am getting used to life with an out-of-commission left ankle and how debilitating it’s been, my procedures have changed. But I’m still here, still alive, still counting my blessings. And as I meditate on the positive, my mindset is changing for the better.