I have learned that living with FA means constant heartbreak and adaptation. For example, I have had to go from using a cane to a walker in the span of two years. I went through the entire process of accepting that I needed a cane, getting the cane, learning how to use it, and becoming comfortable with it. Unfortunately, my body became so unstable with walking that I had to endure the process again and try to adapt to using a walker. Who knows how long it will be until I will have to go through those same steps with a wheelchair? And this is only one aspect of dealing with FA.
I’d be lying if I said I wasn’t scared for everything my future will entail. Every day I hope and pray for a treatment or a cure, but my stubborn-realistic side kicks in and reminds me I need to prepare for the worst too. No matter what I must endure, I know that there are a bunch of people in my corner willing to help me. Knowing how much support I have is what helps to keep my head high through most situations.
Accepting that you need assistance doing something that once required no effort or thought is challenging. We typically think of heartbreak as the result of separating from someone or being deceived. FA has caused me heartache, and I think the amount of pain is the same — it just cuts you in a different spot. There is nothing that can prepare you for dealing with this, it’s just another thing we have to adapt to. The constant heartbreak, being cut in the same spot over and over, and being forced to deal with the aftermath, just becomes a part of the process.
It get so tough emotionally. Some days I stay in bed all day and just cry, but I have realized that is OK. I am allowed days like that, just as long as it’s only one day and I don’t get stuck in that dark hole. Besides other patients, no one can understand how hard it is watching your body get worse over time. No one can understand the emotions and frustration that I endure daily, or how I never feel “refreshed” waking up in the mornings.
The point is, for those of you reading this with FA, give yourself some slack! I see attorneys, parents, students, artists, teachers, college graduates, scientists, and dream chasers in this amazing group of people — and FA isn’t stopping you at all. You’re not an inspiration for having FA, but you are an inspiration for how you are handling it. No matter how much you may dislike that word, it is true.
I look up to so many of my FA friends for their ability to cope with their lives and illness with positivity and grace. (Especially for being forced to deal with something you have absolute no control over). I don’t think there is a proper way to handle the ever-changing adaptations or constant heartbreak; it’s just something that comes with FA territory. And for those of you who are struggling, just be aware that you have something most people couldn’t fathom dealing with, and you are doing the best you can.
Note: Friedreich’s Ataxia News Today 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 other 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 Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.