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.
Friedreich’s ataxia (FA) is a cruel, degenerative genetic disease that attacks the central nervous system and deteriorates muscle coordination, strength, energy, and dexterity. It steals motor skills, making FA patients progressively more disabled.
As an FA patient working my way through the symptom progression, I can tell you that it never gets easier. Losing my mobility, dexterity, and energy daily no matter what I do to combat my disease is disheartening and frustrating. It is a relentless uphill battle that makes me completely weary: mind, body, and soul.
However, even with everything FA puts me through, I aim to remain positive. I love my life and all of the people around me. I have a phenomenally supportive, understanding, and optimistic husband. I have two compassionate and silly kids who lovingly see me as “mom” despite any shortcomings. I have wise, kind, and generous parents who do everything they can to make life with FA as pleasant as possible. My extended family and friends are so encouraging, flexible, and sympathetic. Basically, my village sets me up for success in the face of my failing body.
Yet the weight of the reality of my disease overshadows everything occasionally. This weekend was one of those times.
We had a family reunion and celebrated my mother’s 60th birthday. I threw a surprise party for her at my house on Friday and we did a whole day of silly poolside games at my parents’ house on Saturday.
While prepping for the party, I was busy doing this and that around the house to decorate, clean, organize, and prepare. I would knock out four or five tasks and then have to completely stop and wait for my able-bodied husband to be available to slip away from work for a few minutes to help me with something, be it climbing a step stool to grab something, carry something big and/or heavy to another room, move something, etc.
I desperately wish I could flawlessly do it all. In my mind, I can so easily see “healthy Kendall” bopping up that step ladder to grab the serving platter to display the fruit salad. I can picture my kids’ faces when they walk in and see the artfully draped banners and balloons that Mom put up. But my body won’t let me do it. I have to humbly ask for help then patiently and graciously accept it way more than I want to and more than the average person has to.
While I watch people help me, I am grateful, yet I battle with what I’ve come to label “mobility envy.” I get so frustrated by my inability to carry out seemingly simple tasks all because of my FA symptom progression. I despise my disability, covet independence, and crave health.
When I catch glimpses of my family eyeing me, worried that I will fall doing something, or when I have to ask my 84-year-old grandma to carry something for me, it crushes my spirit.
I wanted to be like all the amazing, strong, independent, “take-charge” women I admired when I was growing up. I envisioned being the mom helping the dads wrangle toddlers in the field during T-ball games and running to play silly games with the middle schoolers during summer camp. I pictured climbing a ladder and letting my son set the star atop the Christmas tree. I dreamed about flitting around the kitchen to prepare flawless spreads while entertaining company.
I never pictured having to ask my healthy 3-year-old daughter to bring my walker to me so that I could walk to the other room. I never envisioned my 5-year-old son noticing me losing my balance and coming to steady me. I never expected to go to physical therapy every week to practice basic mobility and strength. I wasn’t prepared to feel like a helpless spectator in my life.
Yet this is the reality of my disease. My body is less capable than I ever expected or wished for. I can either succumb to the misery of this reality, or I can make the best of what I can do, and be a joyful and active spectator. I choose the latter. I choose joy. There will be times when the dark overpowers the light, but all I can do is keep trying to live in the light. After all, living is brighter and easier there.