What Friedreich’s ataxia taught me about how to ask for help

Living with Friedreich’s ataxia (FA) has created for me a complex relationship with the concept of help. I believe it’s important for everyone — not just people with disabilities — to humbly and graciously learn how to ask for and accept help. Fortunately (and unfortunately), FA rewrote the handbook for help in my life.

FA is a humbling disease that forces me to rely on help in ways I never would’ve dreamed. I never thought I’d need a walker, for example, to simply move from one room to the next, but now I can’t take a single step without it. I never thought I’d need medicine to calm the nerve pain in my legs and to aid circulation, yet here I am, taking medication every night while wearing my woolly diabetic slipper socks. I never thought I’d need weekly physical therapy to retrain my muscles to safely complete simple tasks.

Because of FA, I’m constantly dependent on help to function in my daily life.

Four years ago, my biggest fear about using a mobility aid, such as a walker, was becoming dependent on it. I worried that using a mobility aid would give my body permission to give up its quest for independence. I was certain I’d become weak and incapable, forcing me to surrender my independence to my walker.

Now I’m entirely dependent not only on my walker, but also on many other mobility aids. Yet unexpectedly, becoming dependent on my arsenal of mobility aids has empowered me to do a lot of tasks independently. While I struggle with my walker being a constant reminder that my body isn’t capable of doing the things I want and need to do, I’m grateful that I can still do most things when I accept help.

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On being independent

The latest antagonist on my journey with the concept of help is entitlement. I must be careful not to allow my need for help to turn into an entitlement to help. I need to strive to be independent in situations where I can safely do so, and not just sit back and expect others to do things for me.

My family likes to use the saying, “Just because you can doesn’t mean you should.” We usually use it in trivial situations, such as when the kids want to sneak into the pantry and gorge themselves on the fruit snacks they recently discovered they can reach. Or when we hear people using inappropriate language or making bad choices.

But the saying applies to me, too. I can easily use FA as an excuse to avoid pitching in around the house, skip a school function, lie in bed and pout all day, or think nasty and envious thoughts about people who are capable or don’t offer to hold a door for me. But just because I can doesn’t mean I should.

Yes, those feelings and actions are justified from time to time, but FA doesn’t entitle me to a life where the world has to bend over backward to accommodate me. I need to strive to be independent and self-sufficient, just like everyone else in the world — disabled or not.

Having FA and using mobility aids are hard. Struggling is hard. Asking for help is hard. Accepting help is hard. Depending on help is hard. And while I depend on help to do just about everything in my life, I’m not entitled to help from others. All I can do is keep going about my life, graciously accepting help when it’s available, and figuring out a path forward, just like everyone else — even when it’s hard.

“If it is possible, as far as it depends on you, live at peace with everyone.” Romans 12:18 (NIV)

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.