I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
While Friedreich’s ataxia (FA) is a physical disease that happens to my body, I have noticed that my physical symptoms affect my mental outlook on life.
I have always been the type of person that is part of the action. Whether I am the mastermind behind planning the fun or I am out there in the middle of it, I love making happy memories and celebrating all that life has to offer.
As my FA symptoms began to progress, I had to sit out for some of the action. I was still able to do most of what I wanted to do, I just had to modify some of the tasks. But as time has passed and my symptoms have progressed, I am unable to do more and more of what I want to do. And I have found that using what little energy I do have to do the things I want to do doesn’t leave enough in my tank to do the things I need to do later. I have to think beyond the moments and prioritize my energy expenditures.
On several occasions lately, I’ve had to decide if I should go for it, miss out on an opportunity to allow my body to rest, or try modifying what I can to be a part of it. As someone who historically has been driven by FOMO, or the fear of missing out, this has been a particularly difficult adjustment.
Making obvious modifications, such as opting for a wheelchair or sitting on the sidelines instead of trying to be involved with the aid of my walker, is a heartbreaking choice that I find myself making more often lately. I’m not usually one to draw negative attention to things or seek pity, so when I sit out certain activities, I immediately face a mental funk.
For example, my daughter, Collins, and I recently tagged along on a conference trip with my parents. As the younger sibling, Collins hasn’t had many adventures that were all about her, so we wanted to make it really special. We decided to kick off the week by treating our sweet animal-loving girl to a trip to the zoo.
When we were buying our tickets, zoo administrators noticed my walker and told me about their
wheelchair and scooter rental options. Impulsively, I decided to forgo those options and navigate the zoo with my walker and my family. Why? When I was deciding, all I kept thinking was, “This will probably be my last zoo visit while I’m still able to walk, and I want Collins to have a memory of walking around the zoo with her mommy.”
Selfishly, I didn’t want to admit I was “that disabled.” In my stubborn mind, I thought, “I am still able to walk, so I should walk while I can.” We visited every animal in every corner of that zoo and ended up walking almost 4 miles.
Was that a stubborn and avoidable exertion of my energy resources? Probably. Would using a wheelchair instead of a walker have made a difference in my daughters’ experience of the zoo? Probably not. Do I regret my decision? Kind of.
I had a long night of painful leg cramps after the day at the zoo, so I was even more fatigued than I thought I would be. It took me a while to recoup the excess energy I used for that adventure. I was pretty tired for the first half of our week. This could have been avoided if I had just accepted help and used a more appropriate mobility device.
This was a valuable lesson for me. As someone who loves to embrace the moment and be a part of the action, I need to take the time to think beyond the specific moment I’m embracing. I need to think about the effects my choices will have on the moments in my immediate future. I need to embrace the reality of my disabilities in each moment to make smarter choices. If I take a breath to acknowledge and address FA, I can more fully, safely, and happily embrace every moment.