Client Spotlight: Living with Ataxia Telangiectasia

by Claire Stanley, one of our studio heros

Heather and Claire

I’m not sure what Heather thought when she saw me walk into the studio clutching my husband’s arm for stability. All I can say for sure is that my stomach was fluttering from excitement and nerves. I was excited to start my Pilates journey but nervous that my body wouldn’t let me. See, I’m not used to having an uncooperative body ….

Growing up in a small English town was wonderful. I did everything you’d expect in childhood-- played sports (LaCrosse was a favorite), sang in the choir, went skiing, and danced. I even had a stereotypical horse phase. But where I really excelled was school. Head Librarian, house prefect, school prefect, house points cup winner: yes, I was a bit of a Hermione Granger. If there was a way to make something a competition, I was sure to find a way to win. So when my family relocated to Texas in 2004, I wasn’t too worried. After all, it was just a new place for me to shine. In fact, I was excited to move as it gave me the chance to try an All-American sport: cheerleading. I only spent a season on my middle school team, but doing so helped solidify my love of performing. During high school, I discovered drama and musical theatre and the stage soon became my home. Of course, academics were still very important to me, and when I got into my dream university (which my college counselor said was a shot in the dark), I was over the moon. I went off to Vanderbilt University in fall 2009 to study Child Development and Theatre, wearing heels and make-up, and feeling like an adult.

In Nashville, I led the life of a typical co-ed. I graduated after landing a summer internship at a local children’s theatre. There, I dreamt of pursuing a career in Drama Therapy, combining my love of psychology, theatre, and kids. But a year later I was back in Fort Worth, meeting my future husband and working at the children’s museum. Part of me knew I’d be staying in Fort Worth for the foreseeable future. I thought love and family would be the main things keeping me here. Little did I know there would be more.

When I was a young child my teachers had noticed “overflow movements” but doctors were unconcerned and assured my parents that I’d grow out of it. Honestly, I never noticed, and it never bothered me as was evident from the dance and theatre. In college, Student Health referred me to a neurologist after I had issues with my eyes but I was given the all clear. I still thought everything was fine. Sometime after moving to Texas again, I quit wearing heels and my gait began to widen. Jump forward to 2016. In May I quit my job and in October, I finally got an answer: Ataxia Telangiectasia.

Okay, time out. What is Ataxia Telangiectasia? Well. A-T (as it is more commonly abbreviated) is a super rare (1 in 40,000--100.000) debilitating, life-shortening, genetic, neuromuscular disease. It affects gait, balance, stability, and muscle strength, and sometimes involves the immune system. Oh yeah, and it’s a childhood disease. Its onset is usually seen between age 2 and 5, leaving most patients wheelchair reliant by about age 10. Yet there I was, an otherwise healthy 25-year-old adult, receiving the worst news of my life.

I didn’t have much time to process my new diagnosis; I had a wedding to plan. And a honeymoon. Then a new job. Basically, I didn’t have time because I didn’t want to have time. I still had so many things I wanted to do, and I didn’t want A-T inhibiting me. I kept on denying and making excuses until I couldn’t deny anymore. So, in July of 2019 I called Heather at The Pilates Center, and made an appointment to work on me.

As I ventured onto the reformer for the first time, I tried to explain the weird mutation that’s robbing my life of normality. I remember feeling self-conscious but something in all the staff’s kindness and supportiveness kept me coming back. The Pilates Center has not only helped to increase my stability, but has also given me renewed sense of purpose and confidence. I definitely feel stronger, and I hope that strength will keep me out of a wheelchair. Plus, I am seeing a real “Pilates’ body,” which I love and I know my husband adores…
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As much as I grumble during my sessions, as much as the stretch may hurt, I really do love Pilates. During the six months that I have been at the studio, I have found it easier and easier to stabilize during hip work. I have also noticed an endurance increase.. Even though it’s super difficult, and I STILL can’t keep my legs completely straight, I enjoy working on my teaser (partly because of how impressive it looks). The perfectionist in me finds it hard to do exercises I know I’m bad at, but the way I feel after a session keeps me coming back for more.

Most people have never seen ataxia, let alone Ataxia Telangiectasia, so they don’t know how to react to me. People know how to act about a broken bone, and at least they understand what diabetes or cancer is. But seeing a woman who looks drunk when she walks across the room is different and scary for the majority of people. So now, do a little something for me: go to atcp.org and educate yourself. Don’t assume. And most importantly, be kind.