As my FA progresses, my mantra is ‘don’t worry about tomorrow’
“Worry does not empty tomorrow of its sorrow, it empties today of its strength"
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Friedreich’s ataxia (FA) is progressively degenerative, and its reach is far and wide. What started as trouble staying on my feet during sand volleyball matches became an inability to walk unassisted 10 years later.
With that progression, to say that FA has demanded adaptation from me would be an understatement. At age 30, I had to adapt to a life that is dependent on assistive mobility devices.
My journey with mobility aids started with a three-wheeled rollator that I’d use when I’d venture out in unfamiliar terrain. Eventually, I became dependent on a walker anytime I took a step, no matter where I was at. But there were times when even that wasn’t enough, so I acquired a manual transport chair so that a helpful hand could push me when it became too taxing for me, too risky, or simply beyond my ability.
Then, when I broke my foot and the doctor ordered me to keep weight off of it, I acquired a manual wheelchair. While this need was temporary, I was grateful for it, because it provided me an opportunity to get comfortable in a wheelchair. It also helped me realize that my life could still continue with a wheelchair.
Soon after that, when I was back on my feet using my trusty walker, I realized that I needed a power mobility scooter. I opted for this item for several reasons, primarily because I needed something that could handle gravel, grass, bumpy sidewalks, and inclines, all while providing a comfortable place to sit down. I loved the independence it provided, allowing me to be able to go to the restroom unassisted or bop around my children’s sporting events to see my friends without needing someone to roll me. Until now, I’ve used it only at my children’s outdoor activities and during trick-or-treating in our neighborhood, because it’s too bulky for indoor use.
While I’ll continue to depend on my scooter that way, I also now need a device with a smaller footprint that performs the same general functions in an indoor setting or on paved areas, like at church, in stores, on the path to my children’s school, and more. So I purchased a power wheelchair based on the recommendations of a few friends in the FA community.
While I’m waiting for the chair to arrive, the mobility challenges that required this purchase remain, especially in the cold weather, which worsens my balance and makes my movements more spastic and taxing. Therefore, this past weekend, I experienced yet another first: I used a wheelchair at church.
I’d been to a lot of places in a wheelchair before, including church, when I was recovering from my ankle and foot injuries. But this was the first time its use wasn’t necessitated by an injury. Luckily, it was a smooth first. No one batted an eye, asked intrusive questions, looked at me with pity, or let on that they thought anything alarming about seeing me sitting down in a wheelchair.
I’m so thankful for that, but I also know that this won’t always be my experience during every first. As my symptoms progress, my power chair makes its debut, and my disability becomes even more public, I’ll undoubtedly have negative experiences. I was enveloped in worry about that when I came across a fantastic quote by the late Christian writer and speaker Corrie ten Boom that made me stop and think. She wrote, “Worry does not empty tomorrow of its sorrow, it empties today of its strength.”
What a powerful thought. I’ll plan to accept my future firsts as they come. I know that some will be smooth, others hard, some will feel positive, and others will feel like setbacks. I shouldn’t fray my emotions by worrying about that now. I’ll only be doing my future self a disservice. I need to trust that I’m doing everything I can today to make tomorrow as safe as possible.
“Do not worry about tomorrow. Tomorrow will have its own worries. The troubles we have in a day are enough for one day.” — Matthew 6:34
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.
Cheryl B
When I was first diagnosed, my doctor said the best thing I can keep in mind is “today is the best day you will ever have”. While that sounds negative it also prevents me from hoping for better and being letdown constantly.
Having lived the past 20 years with a cancer kid, I’ve learned it’s better to have minimal expectations and to be surprised with good news than you hope for good and have horrible/bad news. For example my kid has a UTI. We stupidly expected that a UTI meant we could give him oral antibiotics. And we were doing that for a week but we started noticing a few things were a little off (it’s the only thing that I can explain it as). We took him to the emergency room because he just finished radiation in June and we knew him, with all of his medical problems, it was likely to not cause a fever, but drop his temperature instead. Turns out we should’ve been even more worried than we were because he tested positive for three gram+ bacterial infections in the urine and one in his blood. And because we were not expecting that, it’s been really hard. I’ve been stressed and we all know stress makes our ataxia worse. Had I expected things to go this bad, I would not be as panicky as I feel (yes I know for a fact that is the way I handle it because that’s exactly the way things have gone since I was a kid… and I’m 48 now so it is many decades of experience behind my response to it).
So my advice is to expect the worst and hope for the best versus expecting the best and getting the worst you know what they say. You can always go up, but you can’t go down when you’re already at the bottom.
Though I will say this, even though I have Late Onset Friedreichs Ataxia, I have other complex medical issues. So when I was diagnosed the geneticist said.” with everything I really had going on and the new diagnosis of ataxia, every issue I have will be 10 times worse because I have chronic pain syndrome that began when I was 18. And I also have an anxiety disorder, which…who doesn’t have one anymore, but with everything with my youngest child and I have my husband recently retired from the Marine Corps (who also nearly died in Iraq two months after our youngest son was born) so I have very high level of anxiety and pain on top of the so everything hits me much much harder than anyone they’ve ever known at least. That is not saying I have more pain or issues than anyone here so please don’t look at it as that it is simply my doctor has never had anyone or soft and she’s was at Duke university and I currently get treated in Wilmington, North Carolina at the neurology clinic movement specialty department.
Sorry for the long explanation, but I never want anyone to see something I post and instantly lose hope because that is the very last thing I ever want. I am typically someone who’s optimistic. It just makes it so much easier existing when you constantly look at the bright side.