Tara Oakes is 22 years old and from Lancashire. Tara was diagnosed with Friedreich’s ataxia (FA) in 2018, after showing symptoms from 2008.
Here, Tara shares two difficult and personal stories that led to seclusion for five years.
“I was 15 at a friend’s birthday party, and a local bar had been rented for us to have a dance party in. I could still walk back then, though with some exhaustion and balance issues. I was extremely insecure about my lack of stability and had begun to retreat from my friends due to it.
During the dancing everyone started spinning each other around – I knew it would be a bad idea, but I didn’t want to miss out on the fun. I ended up crashing into a stack of seats. I was fine, but when I turned around there was a man laughing and making a drinking gesture, assuming I’d been having too much alcohol. I tried to say no but the music was too loud and he didn’t believe me.
It was the most humiliating and helpless moment for me, because not even my friends knew about my disability, so maybe they all thought that I’d been on the drink, too.”
And then again
“The second time changed my life, and not in a good way. I was 16 and still able to walk unassisted, but with very bad staggering. While out for a walk, a man in a car rolled up and asked me for directions. I stumbled over to the edge of the pavement and gave them, flustered and almost falling.
I decided to go straight home, but my staggering had become even more pronounced and the man drove up next to me again to ask if I wanted a ride home. Terrified by tales of sexual predators, I refused and tried to take an alternate route home down side streets to shake him off.
I passed a postman I knew well who I could have asked for help, but I was scared and too tired to explain my condition. I fell a few times, so I was humiliated and distressed by the time I got to my street. He was already parked there, looking for me. I hid in the alleys behind my house, shaking and calling my dad until this “stalker” left. It would be 5-6 years before I regained the confidence to leave my home again, and by then, my ability to walk was gone.
I did not have an Ataxia ID card back then, but if I had it would have helped immensely to get the help and understanding of people around me. It would have helped when I need something “official” to prove what condition I have, or when I just needed something to explain everything faster than I could speak. I know it would help people avoid going through what I did.”
People should never feel uncomfortable or anxious for having a rare, untreatable condition. By sharing this story and your own, we can raise awareness of ataxia and prevent these situations.