The Daily Risk Analyses of ‘What Can’t I Do Anymore?’
My family and I went to Tulum, Mexico for Thanksgiving. We love to travel on Thanksgiving because, to us, the most important part of the holiday, and any holiday, really, is to spend time together. We tend to do all-inclusive beach resorts because it’s easy with kids and there is something for everyone to enjoy.
The last trip like this, however, was when we went to Negril, Jamaica for Thanksgiving in 2018. I had just fully recovered from my ankle reconstruction and I was walking independently most of the time. My daughter, Collins, was only 1 then, so we brought a stroller and I occasionally used that as a walker, although my husband, Kyle, or my parents would help me navigate the sand or stairs. My Friedreich’s ataxia (FA) did not affect the trip too much, although I kept thinking in the back of my mind, “This is probably the last beach trip where I won’t be officially disabled.”
And, boy, was I right. I am now “officially disabled.” Just like I predicted. I am 100% dependent on assistance to walk. And even then walking is difficult and unsafe. It requires so much mental and physical energy that on this vacation I began to notice how much my change in perspective has affected my personality.
For instance, I am no longer spontaneous or adventurous. I don’t try new things anymore. I get hurt doing mundane tasks. I broke my ankle just walking from one room to the next. I broke my foot getting out of a chair after dinner. I fell and bumped my head helping my daughter dry off after her bath. On the first morning of this vacation, I fell getting out of bed and banged up the whole left side of my body. My ankle hit the ground so hard that one of my ankle screws cut through my skin.
Everything I do takes supreme focus and I get hurt doing easy things, so I choose to sit things out for fear of what could happen. That caused a lot of disappointing heartbreaks on this trip. When my son begged me to climb up to the fun rock ledge to jump into the awesome plunge pool with him, I had to say, “No, mommy can’t.” When my daughter wanted me to walk the shoreline and hunt for shells, I encouraged her to go with my mom instead. I had to sit out things that even three years ago I would have been eager to try. Now I choose to sit and watch the fun instead of participating in it.
I constantly have to do an internal “risk analysis” because my FA body won’t allow me to just hop up and do things. I’m always thinking, “If I tried X, how would it work? What could I hold on to? What’s the worst that could happen and what do I have to do to avoid that?” Most things end up not being worth the risk these days, especially new things that happen outside of the comfort of my home. I am forced to go against my nature and say no, which leaves me feeling weary and frustrated. I am so tired of saying no when all I want to do is scream, “Yes!”
Unfortunately, I have to make my safety a top priority. It is hard to do that when my abilities and disabilities are constantly changing. People try to cheer me up when I say that I will sit something out because of my FA by saying, “That’s probably the right decision,” and “Better safe than sorry.” But while I am sitting there safely, I feel nothing but sorry. Sorry for myself. Sorry for my kids and their disappointment and frustrations. Sorry for my future self that will be able to do even less.
Even though I had to say no to a lot, I did get to enjoy my vacation. I got to soak in the sun, to listen to my kids’ joy when they told me about their experiences, to have lovely conversations, and to truly appreciate the beauty and wonder of our world.
Things are different than we would like them to be, but they can still be good. As the saying goes, “Life is tough, but, my darling, so are you.” FA warriors are a special breed of tough, and we enjoy the world from our perspective the best we can.
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.