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.
I have yet to find the secret to living a life where I wake up every morning rejuvenated, motivated, perfectly calibrated, and ready to tackle my day with gusto. I don’t think anyone has, but it’s especially difficult when I’m at the mercy of the wild card that is Friedreich’s ataxia (FA), which causes my physical abilities to progressively deteriorate.
Instead, every morning when I wake up, I take Skyclarys (omaveloxolone) and assess my body. I can usually tell within the first 10 minutes what kind of day I’ll have. I can feel how stiff or sore my legs are from my nightly battle with nerve pain and cramps, I can tell how strong (or weak) my arms and hands are as I heave myself out of bed using my grab rail, and I can tell how responsive (or sluggish) my body will be after the 100-step journey to my bathroom.
Based on that basic routine assessment, I adjust my plans for the day. As a mom of two lively elementary-age kids, my schedule is always hectic, action-packed, and not really my own. I quickly think about what absolutely needs to get done that day, what I’ll need help with, what I’d like to accomplish, and what can wait until the weekend.
After I make a plan for the day, I have to get my body on board by taking precautions. I plan the proper footwear, when and what I’ll eat, which mobility aid will best suit my needs, how I’ll stay properly hydrated, and how I can best care for my family amid all of that.
Being a mom forces you to be selfless, often thinking of yourself last. That’s the opposite of what life with a disability demands — that you put your own safety and needs first. This conflicting give-and-take often overwhelms me and leads me down spirals of guilt, frustration, regret, exhaustion, and worry.
Add in all of the mixed messaging we receive from social media, where self-care is the priority, yet we must soak in every moment because time is so fleeting, while also working hard, playing hard, treating ourselves, prioritizing savings, creating deficits, loving ourselves, trying harder, and on and on. It’s impossible to follow all of the conflicting advice and keep our sanity and productivity intact.
Focusing on today
I recently heard a sermon that led me to an epiphany about this conundrum. The topic was perseverance, which the speaker defined as hope in action. He explained that the two go hand in hand, because if you have nothing to hope for, you have no motivation to persevere, and if you don’t persevere, you can’t achieve what you hope for.
This concept helped me realize a few things, such as how, for better or worse, this body of mine is fleeting. I must use what I’ve been given on a particular day. I never know how I’ll wake up feeling tomorrow, so I just need to persevere today. Some days, that looks like crossing 35 items off my to-do list with a smile on my face and warmth in my voice, and on others, it means dropping everything and snuggling with my pets and kids all day. I extend myself grace, knowing that each day isn’t measured by productivity, but by doing and feeling my best.
I can get caught in toxic thought patterns like, “I need to do this while I can still walk,” “I can’t wait until there’s a cure so that I’m able to do this activity,” and “It’s so unfair that I can’t do this task.” While I’m full of hope for that cure to come one day, I still need to persevere through my current circumstances. The best way I can persevere is to accomplish what I can with what I have, make peace with the rest, and seek pockets of enjoyment amid the chaos.
“We are saved by trusting. And trusting means looking forward to getting something we don’t yet have — for a man who already has something doesn’t need to hope and trust that he will get it. But if we must keep trusting God for something that hasn’t happened yet, it teaches us to wait patiently and confidently.” — Romans 8:24-25 (Living Bible)