The loss and grief that follow seeing my past, more capable legs

A few days ago, I looked at vacation pictures from our trip to Hawaii in 2007. It was a wonderful vacation — not perfect, but fun and relaxing. We watched postcard-perfect sunsets over the ocean, framed by palm trees, glowing in pinks and oranges. We relaxed on the beach, swam with sea turtles, attended a luau, and ate our fill of coconut-shaved ice.

I highly recommend Hawaii. I don’t recall any accessibility problems, which are a constant issue for me because the disease I have, Friedreich’s ataxia (FA), has caused me many mobility issues.

However, and this point is a big one, I was then using a rolling walker to get around. A single step was easy for me to manage back then. And at the time I didn’t need a hotel room compliant with the Americans with Disabilities Act; as long as my walker fit and I could use a shower chair, a regular room was fine.

On the plane, my walker — less complicated or expensive than a wheelchair — was checked at the gate. I wasn’t too worried about it in the belly of the jet from Boston to Hawaii. I wanted to get it back, but I knew it could easily be replaced.

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Besides the memories of beautiful Hawaii, I was struck in the pictures by how strong my legs were. That version of me 18 years ago could do many things I can no longer do, including walk.

Sometimes the losses of FA unexpectedly overwhelm me. I didn’t expect those vacation pictures to cause me grief, but they did.

It’s like any grief; it reared its ugly head just when I thought I was doing well. I reminded myself that grieving is a normal part of having a rare or chronic disease. There’s no way out of grief except through it. That means I’ll have to feel the pain, as well as the knowledge that I’ll keep feeling losses and mourning because FA is degenerative.

Along with mourning the me from 18 years ago, I felt angry that I had to experience the sadness again. I mourned when I transitioned from using a walker to using a wheelchair; why do I have to mourn again? I was envious of the past me who had strong legs and could walk. FA is out of my control, I reminded myself. I also reminded myself that feeling sadness and envy for my past, more capable self is common among people with rare and chronic diseases.

Creeping shame makes seeing those strong thighs more complicated. Maybe I didn’t work hard enough to maintain them. Wait, what am I telling myself? I’m telling myself that the strength I lost because of FA is my fault. If I follow that delusional thought further, I might believe I have FA because I’m lazy.

That’s not true at all. If you’re thinking that way, those thoughts aren’t true! Please be gentle with yourself.

FA is a disease. Disease is part of the natural world. No one, including me, caused FA. If you have FA, your parents probably had no idea they were carriers. I could do 5,000 leg lifts a day, and I’d still have FA.

I reflect on these truths and remind myself that I can control certain aspects of FA, such as eating healthily, exercising, enjoying life, and advocating for myself and others in the search for a cure for FA and other diseases. Importantly, I can be kind and avoid blaming myself when I think about my FA progression.

I flipped the script a bit and marveled that I gave myself and my husband that vacation. We had fun that I might not have been able to have now, when I’m 18 years sicker. Which isn’t to say I can’t and don’t have fun now. A life with FA is the one I have, and I’m doing my best to live it well.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.