Accepting my reality with FA while striving for a better future
I can't let my desires hold me back from enjoying life as it is
So much of living with a progressive, lifelong disease like Friedreich’s ataxia (FA) is mentally processing and accepting the physical changes it brings. But with the widespread degeneration of my body and the resulting decline in my abilities, that can feel like an overwhelming task at times.
Every night, while brushing my teeth and getting ready for bed, I think about how my body performed that day. I mentally pat myself on the back for making it through another day with FA and celebrate any accomplishments, even mundane things like putting groceries away safely. I then think about actions that felt risky and how I can mitigate said risk going forward. I also reflect on any stumbles or falls I had that day and how to avoid a repeat. Finally, I think about the following day so I can plan out the logistics.
Although these seem like a lot to think about, it isn’t that time-consuming. I’ve been doing it for over a decade now, and it’s become routine. Figuring out how to survive tomorrow with FA is my evolving daily task.
However, I’d be remiss — and, frankly, untruthful — not to say that I wish this process weren’t part of my daily routine. I’d love to be free of the burden of FA, but alas, it’s my burden to bear for now.
The importance of accepting reality
I’m a mother to two children in elementary school, and we enjoy our fair share of films. I’m a big fan of Disney and often find little nuggets of wisdom in its movies.
When we watched the 2023 live-action adaptation of “The Little Mermaid,” a quote from Sir Grimsby, one of the supporting characters, resonated with me. In advising one of the main characters, he said, “Don’t be held back by what you think should be. Think of only what is.”
I think the advice should be taken with a grain of salt, as striving for a future with more possibilities — like more treatments and an eventual cure — is a good thing. However, I appreciate the first part of his advice.
The way I see it, we have two choices when dealing with difficulties: being held back by what we think should be, and making the most of what is.
Yes, I desperately wish that FA weren’t part of my life. I desperately want to be able-bodied. I desperately want the world to be rid of illness and injury. But I refuse to be held back by those desires by considering “what should be” as the only acceptable reality and consequently failing to make the most of my life as it is.
I have FA. I depend on mobility aids for daily functions. I depend on help from others to complete many simple tasks that most people can do safely and mindlessly on their own — and that’s OK! It’s worth it to keep trying. It’s worth it to keep moving forward while letting the past guide the decisions that help me safely navigate tomorrow.
Some of my favorite Bible verses are Galatians 6:4-5 (New Living Translation): “Pay careful attention to your own work, for then you will get the satisfaction of a job well done, and you won’t need to compare yourself to anyone else. For we are each responsible for our own conduct.”
It’s a convincing thought, and also quite liberating. I’m not responsible for what FA does to my body, but I am responsible for processing, adapting, and living with the disease’s consequences. So I choose to make the most of what is while striving for what could be.
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.
About the Author
Jeannie Cook
I agree with you Kendall. I have had ataxia and it showed it's rare face 24 years ago. I would not use a walker for the 1st 4 years because in my mind there was nothing wrong with me. So when I began falling without any reason as to why my friend that was a police officer told me I'd end up breaking a hip if I didn't get a walker. Yes the law was always called on me because ppl thought I was drunk. I have a twin sister and hers showed up way before mine did so we thought it was just a clumsy state in our lives. We were born at 28 weeks of pregnancy and we went through alot at me being 2 lbs, 15 oz and sis was 2 lbs, 10½ oz. I hear ppl talk about oh I feel sorry for the twins and I turn around and say "I will keep pushing forward" I am happy that I can keep trying because that is all we can do. I am almost 44 and I notice daily that I have to slow down and do what I can only do. Atleast 3 tasks a day I try and mark off my chore list. We can't do like we use to but I wouldn't change a thing in life now. I realize that I was given that messed up card deck and I have to keep playing them. I'm raising money through Fraternal Order of Eagles non profit organization that I'm TN state ladies auxiliary president, hoping to find a way that younger kids could possibly be able to catch it before it hits and they slow it down or possibly can cure it.. I give you a huge applause on continuing to keep going. I have been doing balance therapy for about 4½ years and it helps a little bit. I fall daily and just like you I have to figure out how not to do that. I hope you have a great spring coming up.
Love,
Jeannie Cook