Dealing with Progression

As my Friedreich’s ataxia symptoms progress, so do my feelings and emotions about this complex disease.

When diagnosed, I accepted it pretty quickly. I obviously knew that something was wrong with me, so defining it helped validate what was happening to my body. Don’t get me wrong, in my younger years, I never imagined that I had a genetic disease lying in wait that would take away my ability to walk. But once I began developing symptoms, it was strangely relieving to put a name to it. I had a feeling of solemn (albeit reluctant) acceptance.

Being diagnosed also gave me a sense of purpose. There was a whole community of people like me doing life with FA. We all needed to band together to fight for a better future free of this disease. I found Friedreich’s Ataxia Research Alliance (FARA) and put all of my energy into Team Kendall in support of FARA. So far, Team Kendall has raised over $139,000 for FARA. I had a feeling of determined optimism.

Then the novelty wore off. My adrenaline slowed. My symptoms progressed, and I felt discouraged that I still had to fight this disease. I came to realize that I thought we would for sure cure this disease before it seriously affected me. I realized that I hadn’t fully accepted my new reality. I really DO have this horrible progressive disease and I really am going to progress, no matter how much I fundraise or how much awareness I spread. I am fighting against a relentless clock. That realization brought about feelings of anger, hopelessness, and bitterness.

I knew from personal experience that wallowing in that sad place wouldn’t accomplish anything, so I began physical therapy. It is something proactive that I could focus on to help improve my day-to-day. Even though I know physical therapy won’t stop my progression, it can strengthen my muscles and train my body to cope in a way that helps me function safely. Plus, I just had my second baby, so the motivation to work out, shed some baby weight, and get back in shape was even stronger! I felt a renewed sense of fight.

Yet, despite my fundraising, awareness raising, physical therapy, optimism and determination, my flawed genetics are stronger. FA is winning — at least, physically. I am relying on shopping carts, strollers, friends, and family more often than not. So, I got a walker to start using part-time. This has brought so many emotions that are still so fresh that I can’t yet define them. I feel sad that this is a reality, angry that I have to take this step (tactless pun not intended), discouraged that I am not making a tangible difference yet, and hopeful that the walker can help. And I feel abashed that I am this emotional about something that, in the grand scheme of things, isn’t THAT big of a deal. I guess you could define my emotions about a walker as “conflicted” for now.

Progressing through FA is an emotional roller coaster. But I am doing my best to enjoy the ride and face whatever each new hill and turn brings my way. FA might have my body, but it doesn’t have my heart, mind, and soul.

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