I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
One of the most emotional and heartbreaking obstacles to overcome with a progressively degenerative disease like Friedreich’s ataxia (FA) is the use of mobility aids. I know the struggles firsthand because I’ve been entirely dependent on a walker for nearly three years.
I’m very open about my journey with FA, particularly about being a young mother who uses a walker. Lately, I’ve received a lot of messages about mobility aids. A friend or family member will reach out to say, “My [relative or friend], who also has FA, refuses to use a walker. How do I help them?”
While realizing that you need assistance and accepting that reality is a deeply personal decision, I’d like to address some of the main thoughts I had before accepting my disability, in the hopes that I can help others on their journey.
Using a walker is equivalent to admitting defeat.
That is a valid thought. However, it is not admitting defeat, but rather refusing to accept it. Your walker will empower you to continue living actively and independently. In reality, it’s more like admitting that your life is still worth fighting for, and you will continue doing everything in your power to keep moving forward.
My disability is so unfair, I don’t want the constant reminder that my body is failing.
Yes, life with a disability is unfair and inconvenient, no matter who you are. But let me ask you this: Are you able to ignore your disability when you’re unable to walk from point A to point B without worrying about falling? Wouldn’t it be nice to take some of the worry off your plate? Your disability will progress whether or not you accept help, so if you accept help now, you quite likely might prevent an injury from a preventable fall.
I don’t want to look disabled.
Your disability will be more obvious with a walker, yes. People will look at you with curiosity and sometimes pity. But they also will see strength, determination, and grit. They will admire your attitude. Also, it will allow you to spread awareness about your disability, which could lead to research funding, treatment funding, and one day, a cure!
I don’t want to become more disabled.
My biggest worry about using a mobility aid was “becoming more disabled because I would become dependent on constant assistance.” I was worried that my body would completely forget how to function independently. Well, it was already doing that, with or without a walker. That was the nature of my progressive disease. Becoming dependent on a walker restored some of my independence because I was now able to walk without waiting for someone to help me.
I don’t see how this walker will fit into my life logistically.
Making physical room for your walker is a task. You will have to find places to park it when you are on the couch or in bed. You will have to find ways to make it work well for you when you are busy in the kitchen or putting away laundry. You will have to figure out how to safely get it in and out of the car. You might have to ramp some thresholds or widen doorways, but all of that can be done. All of these efforts are worth it if it extends your independence safely. Once you find the right device for you, it does just work out.
I refuse to be ‘that disabled.’ I can get by without it.
When I used this argument with my mom, she frequently rebutted it with the adage, “Just because you can, doesn’t mean you should.” I had a catastrophic fall that obliterated my ankle, requiring intensive reconstructive surgery. Ironically, I saw my walker, sitting in the corner collecting dust because I refused to use it, out of the corner of my eye as I was falling. If I had swallowed my pride sooner and started using the walker earlier, that fall could have been prevented.
I’ve tried using one, and it doesn’t seem helpful.
It took a while for me to find the right device. Before that, it just felt like I was pushing a shopping cart around my house. Once I found the right device, it fit into my life. Also, you don’t have to go from no assistance to 100% dependent on a walker overnight. Try using it around different areas of the house as you get used to it.
Long story short, it is hard. It is emotional. It is not what you had planned at this stage of your life. But listen to your friends, family, and doctors. They likely have your best interest at heart and want you to be safe. And most importantly, listen to your body. You are a wonderfully complex person, and your body is trying so hard. Help it out.