If you look at the walls in my house, they are riddled with fingerprints.
When I am asked about my stage of progression and my mobility, I say that I am a tapper. I navigate through my house by tapping on the walls and furniture to maintain my balance. It’s confusing to those who don’t personally know me, because they see on social media that I use three mobility devices. I am fortunate enough to choose among a cane, a walker or a wheelchair when I go out in public. It depends on who’s in my group, what event I am attending, and how much walking will be required. I choose accordingly.
My cane is almost becoming obsolete in my life now. When I first got it, it was something I actually used and depended on most. I became more independent and it became easier to go out in public. It alleviated the stares and banter that were once debilitating, and it was easier to walk.
Because of my progression, the grip I now have on the cane is shakier, and the fatigue I experience trying to balance on one side of my body is becoming difficult to handle. For now, my cane is used when going into a store when I’m not fatigued, or if I have someone by my side to hang onto.
My walking frame is now one of my best friends. When I want to be 100 percent independent (which is most of the time), the walker is what I use. Sometimes I use it around the house to bring food out from the kitchen, or when taking things from room to room. Trying things with my hands full is almost a guaranteed disaster. Not only does the walker have extremely useful storage, but also it has brakes, which is what I need when walking in public. Sometimes, the frame gets away from me on hills, and the brake helps me stop and regroup. Also, I noticed that people in public are the kindest when using this device. I don’t have to ask people to help me with opening doors, people don’t stare as much, and I don’t get approached by folks asking, “What’s wrong with you?”
The wheelchair is an absolute game changer. Going to a sporting event, concert, traveling, or even a family function is when I decide on the chair. Why? One of the biggest reasons I hated going in public included making everything harder for the people with me and people trying to guess what was wrong with my legs. It was mentally exhausting trying to worry about other people’s well-being as well as trying to focus on putting one foot in front of the other. For instance, I would be more than capable of walking most places, but I know that it would take longer and completely drain my energy. Being in a chair not only conserves my energy throughout the day, but I also have mobility, and I’m not worrying about being a nuisance to the group I am with or having to hang on to everyone to walk.
Part of being a patient advocate, for me at least, is responding to personal messages asking for advice on dealing with FA. Here’s the thing, I don’t offer any advice, I just give my perspectives and views on certain subjects as well as share my personal experiences. Everybody is different, and some things that work for me that may not work for others. For the entire first year after being diagnosed, I called FA a brain disease until I was corrected by a friend of mine. (It’s a neuromuscular disorder.)
I have no idea what I am doing, to be honest. Every single day, I learn something new about Friedreich’s or life in general. But, for some reason, I connect with people using my words, sharing my journey, and making people see a world that isn’t usually a main topic of discussion.
I just want you to know that I’m still figuring it out, this is an ever-changing adaptive life I have attained. At some point, during my advocacy career, I want to see a change in how comfortable people are using their assistive devices. People should not ever have to be self-conscious about using a tool necessary to be mobile, to exist in the world. We all know how hard life can be, disability or not. But some people can make it even harder to enjoy time outside of our houses.
I want everyone to embrace what they have to use, even though it wasn’t our choice to have to use them. So, if you’re a tapper, a cane user, a walker user, a motorized scooterer or a wheelchair pusher, own it!
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.