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.
Life with Friedreich’s ataxia (FA) requires constant adjustment and acceptance. I have to adjust to new symptoms regularly, whether they are temporary, like extra fatigue during a particularly busy season, or permanent, like the frustrating decrease in my walking speed.
I have to adjust to safely accommodate these new symptoms in my daily routine. I go to bed earlier than I would prefer so that my body can rest, and I wake up earlier to ensure that I have enough time to help my family get their day started to make up for my new slower pace.
But more than that, I have to make emotional and mental adjustments before, during, and after my physical adjustments. I have to accept my limitations and find a way to rise above them so they don’t dampen my drive to continue living the life that I have built.
I’ve had a really hard time mentally and emotionally adjusting to these new symptoms because I have yet to find the right combination of physical adjustments to accommodate my fatigue and slower pace. And to top it off, I’ve had two falls, one of which included one of my worst fears: injuring a loved one.
I was helping my 4-year-old daughter, Collins, pick up her room and I completely lost my balance. I spiraled on my way down, frantically reaching for something to steady myself. During this ungraceful descent, I somehow accidentally knocked her down. Her head slammed on her bed right underneath me and then I landed on her head.
By the grace of God, she is just fine. She was scared but just had a little bruise on her head for a day. My tailbone was sore for a week, but physically, I was fine. Emotionally, I was a wreck.
Every fall just reminds me that even though I’m doing everything in my power — using a walker, working out daily, participating in clinical trials, doing physical therapy, fundraising, blogging, and praying — my disease is still winning. FA is making me undeniably sicker and weaker every day. It just feels like an insurmountable weight has been placed on me.
I can kind of ignore the weight of a degenerative disease on the “good days,” but falls just break down my defenses and flood me with the hurt, fear, pain, sadness, uncertainty, and anger that I constantly block out. Falls make all of my efforts seem to be in vain. It’s heartbreaking and soul-crushing.
In the past couple of weeks, I’ve had lots of moments where I’ve said or thought, “This is just too hard. Being me, having FA, is just too hard. I can’t keep going on like this.”
When I reach this point, where I’m at the end of myself, that’s when my faith, family, and friends carry me.
One of my favorite songs is “The Heart of Life” by John Mayer. The chorus says, “Pain throws your heart to the ground/ Love turns the whole thing around/ No, it won’t all go the way it should/ But I know the heart of life is good.”
FA frequently throws my heart to the ground. And the love of my friends and family, and the grace of my God, keep me going. They provide and defend the silver lining. I am reminded that, despite all that FA throws my way, the heart of life is good.
A perfect example of this happened the other day. Our family got home after a long day spent at a double-header game for my son’s all-star baseball league. My walker was in the truck tailgate and my husband was busy unloading all of our gear. I didn’t have the patience to wait for him to help me to the front door or unload my walker, so I took five or so unassisted (and very unsteady) steps to the front door where my other walker that I always leave in the house was waiting for me.
I was so frustrated. During each step, I was internally cursing FA for making this such an unsafe gamble. I was full of bravado, as if daring FA to make me fall again after a day full of taking countless precautions to accommodate my symptoms. When I safely made it to the front door, Collins clapped and said, “Good job walking some steps without a person or your walker, Mommy!”
While my gut reaction was to sarcastically respond, I took a moment to realize that this might be the only time she has seen me walk to the front door unassisted, and it could very well be the last. I didn’t want to taint that memory with my negativity, so I just said, “Thanks, sweetie girl!”