With Friedreich’s ataxia, it’s always something

As we navigate life, I think we’ve all felt, said, or at least heard the common saying “It’s always something.” I find myself saying that as a somewhat sarcastic self-challenge, meaning I still need to find a way to move forward, despite whatever new “something” there is to overcome.

Life with Friedreich’s ataxia and its far-reaching symptoms has no shortage of “somethings.”

The other week, I was refilling my 40-ounce stainless steel water bottle when my grip simply failed. My now full water bottle dropped straight onto the second joint of my middle toe, which immediately seared with intense pain.

Thankfully, I was wearing my thick, no-slip, Sherpa-lined slipper socks, which I always wear around the house, per my podiatrist’s recommendation, to manage my peripheral neuropathy symptoms. That thick sock likely prevented a more serious injury.

In an abundance of caution, I kept weight off of my foot for a little over a week by using a wheelchair and an air-cast shoe I acquired when I fractured my foot in 2021.

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A teachable moment

My sweet 7-year-old daughter, Collins, was sitting on the couch with me while I was icing it the day after the incident. She saw the dark bruises and said, “Wow, that must really hurt. I’m so sorry that happened.” With a gentle smile and a reassuring hug, I thanked her, admired her compassion, and told her that while it did truly hurt, it was feeling better already.

We talked about various injuries that have happened over the years, including hers, mine, and those of other loved ones and friends. We discussed how thankful we are that we can recover from injuries, and how different incidents require different recovery methods. Then I said, “This just goes to show, it’s always something.”

When she asked me what I meant by that, I realized that I had a teachable moment on my hands.

I explained that as she gets older, she’ll realize that circumstances aren’t always perfect, but that’s OK. Injuries, illnesses, tiredness, disagreements, weather, and other things can happen to our plans, but those can be just challenges to overcome, not reasons to give up.

I went on to explain that when I say “it’s always something,” it’s my little way of reminding myself that when the circumstances seem less than ideal, things can still work out well. This new “something” can soon be just a memory or a lesson for future reference. It’s a good way to put problems into a healthy perspective and remember that the end goal remains the same: overcoming and moving in a positive direction with grit and grace.

We talked about the Bible verse John 16:33, “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

There will almost always be “something” that causes plans to change, forces flexibility, and demands adaptation. Knowing that ahead of time can make those “somethings” seem less insurmountable and intimidating. A “something” can seem smaller with the right perspective.

Friedreich’s ataxia brings a disproportionate number of obstacles and adversity to the lives of its patients, including injuries, new and problematic symptoms, accessibility adaptations, and so on. We can learn from each other and from past experience. We can seek help. We can take heart and find peace. We can overcome.

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.