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 often write about perspective because I think it’s vitally important to intentionally maintain a healthy, well-rounded perspective when going through daily life with Friedreich’s ataxia (FA).
FA is daunting and can quickly overwhelm us when we focus on the degenerative aspect of this lifelong genetic disease. We can get lost in unfairness, fear, heartbreak, and the cruel progression of symptoms.
FA patients deserve time to process the relentless trauma of our disease. We need to understand our feelings so that we can find a safe way to adapt and move forward.
After I identify what’s making me sad, frustrated, afraid, or angry about living with FA, I think about the changes I can make to lessen those negative effects on my daily life. I think out loud to my husband, parents, friends, doctors, and physical therapist. Together, we think of a way to adapt.
Once I have my safety measures in place, once I’ve taken care of my physical needs, I then have to address my emotional needs.
It might seem silly to some. Why would installing a new grab rail in the bathroom or buying a new pair of wooly no-slip socks make someone who is already pretty disabled so upset?
Well, for me, there are several reasons. First, it’s yet another physical reminder that my body is failing. Yes, I’m thankful for the ability to adapt and continue safely, but I’m sad that I have to adapt again. Second, it’s not what I want to spend my time or money on. And last, it’s one more reminder that I’m not “normal.” FA becomes even more inescapable by invading yet another aspect of my day-to-day life.
My recipe for shifting perspective
After I give myself the time and patience to process my new reality, I work on fixing my perspective. This requires a fair amount of both honesty and humility.
The first ingredient in my humble pie is looking at what I’ve already overcome. I recall how I thought that using a walker would be the end of my world as I knew it, when in reality, it’s allowed me to safely continue in my world. Yes, I wish I didn’t need it, and yes, it was and is a lot to process daily, but all in all, it makes my life better by sustaining my independence.
The next ingredient in my humble pie is redefining my goals. What can my days look like, realistically? What boundaries do I need to set and protect? How do I want my kids to view my response to this setback? In the big scheme of things, will the installation of this new grab rail interfere with my ability to be a productive mom, wife, friend, daughter, sister, and so on? The answer is usually no. It will help me safely complete mundane tasks so that I can continue trying to be my best.
The third ingredient is a restoration of hope. Hope that this latest adaptation will make my life a little bit better. Hope that there is still a community working passionately toward a cure. Hope that my family and friends will love and support me through this change, just as they have through every other stage of FA.
The final flourish of my humble pie is the reminder that everybody is going through something. My struggle is big and unique, but that doesn’t mean it’s bigger or more important than anyone else’s. Remembering that encourages me to treat everyone with the kindness and patience I’d appreciate someone extending to me.
As Paul Simon sings in “American Tune,” “I don’t know a soul who’s not been battered/ I don’t have a friend who feels at ease/ I don’t know a dream that’s not been shattered/ Or driven to its knees.”
The world, and everyone in it, could benefit from more kindness and light. So I will continue to eat my fill of humble pie and adjust my perspective so that I can do my best, despite FA.
“Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble. Do not repay evil with evil or insult with insult. On the contrary, repay evil with blessing, because to this you were called so that you may inherit a blessing.” — 1 Peter 3:8-9 (New International Version)
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