Its been a while since I have written for my column, and I apologize for the inconsistency to those of you who pay attention to “Fighting FA.” I had to take a break from writing for such a public audience because, to be honest, I just needed some time to gather up my emotions again and write in my personal journal. Also, my time management has not been the greatest lately, so I take full responsibility for that.
One thing I have noticed in my personal life is the amount of misunderstanding that comes with having an illness like Friedreich’s ataxia — especially a rare disease that no one has ever heard of in the first place. We look “fine,” but once any kind of movement is required, the look on everyone’s face becomes contorted and concerned, which results in heightening the anxiety we already have just from leaving the house.
Realistically, I know this is something that will never change, and I completely understand that. However, I would like to think that I can reach some people and help make them a little kinder, or even make them think about their reactions. This past week, I went to my nephew’s first birthday party and, let me tell you, my symptoms escalated tenfold. My anxiety was already through the roof beforehand because I knew there would be people there who haven’t seen me use my walker yet. So when I arrived and saw that the entire party was in the front of the house and every single person had a front row ticket to watch me walk in, it was game over.
I was shakier than ever, causing my walking to be even more awkward and clumsy, which caused me to have a death grip on my walker. That caused my arms and upper extremities to fatigue fast, which led me to focus only on finding a table to sit down at. This prevented me from saying hello to everyone I wanted to, which ultimately caused my brain to think of about 300 million other things simultaneously. And this was only the entrance. I was already exhausted.
To be honest, this emotional part is the most frustrating and disheartening aspect for me. Personally, I have already made peace with my legs not working, with my being unable to do things that others can, and with what is to come with FA. But the hard part is that others don’t understand the constant battle I face every single time I step out of the door. I don’t expect people to understand that fight, but I expect respect and I don’t think that’s asking for much.
If you see someone with a cane, walker, or wheelchair, you don’t have to stare. Obviously, they are struggling with something, so there’s no need to make them feel even more uncomfortable. At least let us roll by, and then you can stare and gossip like “normal” people do. Truth is, I can’t turn around fast enough to catch you, and I probably won’t hear you because of my impaired hearing. Ha!
I hear all the time, “You don’t have to explain yourself to anyone.” I wish this were the case, but it’s definitely not part of reality in 2018. All I am really asking is for people to have a little more decency or compassion when it comes to dealing with others in general. Life is hard for every single person, and each person has their struggles, so just keep that in mind whenever you encounter another person.
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.