Even in a Maddening Answer, a Sense of Relief

“Why can’t you help bring in the groceries?” “Are you that lazy?” “Are you that drunk, already?” “Why are you so tired all the time?” “Why do you always stay in your room?”

I couldn’t bare not having the answers to these questions and constantly being teased. The maddening frustration of trying so hard to do simple things — like walking “normal” when going to ASU tailgates or partying on Mill Street, to hugging my friends in order to walk somewhere — was compounded by not being able to explain why I was struggling to keep up. Every movement I made was extremely awkward, but not yet enough to raise any flags or cause concern. I just attributed all the signs to my lifestyle choices, and being a “normal” college student at Arizona State.

The first two years of college, I gained about 40 pounds. Not exercising, drinking like a pirate, and eating everything in sight will do that to you. Then, I decided that I was unhappy with how I looked, so it was time to make a drastic change. I began a Paleo diet, going to the gym every morning before class, and working my butt off (literally). By doing this I was able to shed the weight and again look how I always did. Remember — this was before my diagnosis, so exercising had a different motivation.

After about six months of this routine, I noticed I wasn’t able to do as much. My workouts went from an hour and a half, to an hour. I wasn’t able to do a cool down (easy bike pedal or treadmill walk to slowly ease the heart rate after working out), and yoga stances were not cooperating with my body. If I worked out in the morning, I would be foggy-brained for the rest of the day and have the attention span of a 5-year-old.

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I was cancelling plans, avoiding going in public, calling out of work, and just making up stories to get out of things. That wasn’t me, I didn’t feel like myself anymore. I vividly remember not attending class for a few days and just laying in bed, extremely exhausted. All I was doing those days was cleaning my bedroom and attending one class. I thought to myself, “Wow, Frankie, what’s wrong with you? Get up!”

During the summers when I was back home, I had the pleasure of working for my godmother and her husband in their office. He is a well-respected orthopaedic surgeon and she’s an amazing registered nurse. I helped with filing, organizing, and basic front office duties — perfect work for the summer.

However, I noticed my walk getting a bit more unstable on trips through the office hallway. It connects the front office to the back patient rooms, and it seemed to be getting longer and longer. One day, I asked if the doctor could check me out because I felt “off.” He got out his plexor (a small hammer with a rubber head used to test reflexes) and began to tap my knees.

I’ll never forget the way he and his wife looked at each other. Absolutely nothing was happening – there was radio silence from my arms and legs. That day, I knew something was terribly wrong. My godmother sent me to a local neurologist, and that’s where I heard the term “ataxia” for the very first time.

At this point in life, my family and I had no health insurance. We didn’t have access to a doctor able to diagnose me until 2015, which is a big reason my diagnostic process took two years. My family did everything possible to put me through college. We had to struggle and make sacrifices, just like every other family, and that was the decision made.

On the day of my diagnosis I felt anger, frustration and, honestly … a sense of relief. Anger and frustration for the obvious reasons of being diagnosed with a disease with no cure that slowly weakens your body over time. But relief at finally having an answer to all those questions. The fact that I was now able to understand why I had to try so hard to do things like walk was unbelievably gratifying. I am not saying I was happy to be diagnosed with FA, but I am satisfied that I finally have an answer.

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Note: Friedreich’s Ataxia News Today 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 other 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 Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Friedrich’s Ataxia.