Retrospective Lily

I recently wrote an article about my disability journey for my local newspaper. Click here to check it out!

A young man about to graduate from a nearby school with a physical therapy degree then contacted me; serendipitously, when the article was published, he was working on a project which involved interviewing patients with neurological conditions.

There were, of course, many questions about Friedreich’s Ataxia – when/how did my symptoms appear and develop? How do I describe the condition? etc.

Questions about my interests, social life, college major, etc. were mixed in, too. It felt humanizing, holistic. One can only understand a person’s health struggles if they also get a snapshot of their personality and life.

Two of his questions really struck me –

What is a moment you wish you could revisit?

What is the biggest lesson you have learned in life?

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As I processed the first question, a lump formed in my throat, and I struggled through my answer.

There isn’t a particular event or day I want to revisit, but I occasionally yearn for times when my life was easier, on a physical level. The years when I could still walk, or when I could still drive…

I need to clarify why I choked up. I don’t sit around every day dwelling in sadness because I can’t walk. No, I got emotional when the profound irony of this next part started sinking in –

I didn’t appreciate the abilities I still had when I had them. We so quickly default to self-pity, complaining about what we lack. At the time, I concentrated not on how thankful I was to be ambulatory or to be free to go anywhere any time, but rather on how sucky it was that I had a disability at all.

And here’s another kicker: I was much more self-conscious and insecure then. Would I rather have more physical abilities but less mental peace, or vice versa??

In spite of everything, I’m grateful to be in my present headspace.

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I had two answers to the second question because I felt these mottos were equally important:

Never give up on yourself.

Life doesn’t have to be perfect to be wonderful.

I could stew in resentment or depression over my circumstances and eventually give in to defeat… but it’s the worst thing I could do for myself.

Sometimes in life, your mentality is your reality. If you think you’re old, guess what? You’re old. And if you decide you’re unworthy or incapable of effort and self-care and hard work, you will be.

Obviously, “your mentality is your reality” can’t always be applied literally. I could adopt the mentality that I’m able-bodied, but if I stand up from my chair and attempt to walk, my face hitting the floor will remind me that I can’t simply outwit my disease.

However, I CAN focus on what I can still do, rather than lamenting what I can’t do. I CAN choose my attitude and approach to life. I CAN dedicate time to physical, mental, and spiritual self-development in whatever ways I am able to.

The second life lesson is self-explanatory.

Truly, life doesn’t have to be perfect to be wonderful. I have so many reasons to feel gratitude and joy every single day.

What is the biggest lesson you have learned in life, dear reader?