Friedreich’s ataxia! It’s been a huge part of my life and still is. I guess that’s what makes me, me. You may have already read about the different stages of my life where I began to notice impactful changes in my condition. Some changes were slowly progressing and some felt almost instant.
When I was 24 years old, most of the symptoms of Friedreich’s ataxia had surfaced. It started with my spine curving to one side, which eventually affected my posture and stability, so next came the chair with hot-wheels. Beat that. Haha, hope you got that reference. If not, Google it. Then, began the slowly progressing vision loss. During this phase, I also experienced minor speech difficulties. It now requires greater effort for me to speak and communicate with others. The fluctuating tone in my voice, as well as my slow responses, means that I run out of breath easily, leaving me gasping for air after every sentence, sometimes even in between. The funniest thing is when people interrupt me mid way, thinking that I’ve finished, when most of the times, I was just getting started! It used to annoy me a lot, but looking back at it now, it’s quite funny. When my muscles become stiff and rigid, my posture gets frustrated and I can still feel the nerves inside getting aggravated. As a result my head and neck involuntarily start shaking vigorously. Sometimes this can be sensed externally by others.
Towards the end of my University years, I could feel slight changes in my hearing. At this point, I wasn’t ready to accept another drastic change in my life. As days went on, it became an increasingly worrying thought. I eventually got it tested and was surprised by the outcome. My hearing was unchanged, but doctors said that the neurons and nerve fibres transmitting to the auditory cortex was damaged. That’s what caused the slight decline in my hearing.
My vision has been impacted the most over time. I can just about make out dark shapes and outlines, sometimes not even that. When you’re bored, what’s the first thing you would do? Pick up your phone, scroll through social media or watch a Netflix show. But, having poor vision has made it impossible to do even that. One of the biggest time-passing sense is no longer available to me. Having no field of vision at times scares me because I am not aware of my surroundings, the environment or who’s around me. This again reinforces my desperate dependency on my hearing.
Most of my disabilities are hidden, except the obvious external ones. People would only understand this if I explained it to them. But, it’s hard to explain, especially because I, myself am not aware of what’s happening. Things can seem normal one day but then can drastically change another day, so I don’t fully understand ‘normal’ myself. Despite these ongoing changes, the support and encouragement of my family and carers has made it easier to cope with and to some extent more bearable.
The effort and paramount support of my family and carers are substantial. I’ve accepted that there is no cure for my disability, as of yet, however my family have always made life seem a lot more normal. There was a time when my siblings were away to complete their university degree. I remember missing my siblings during this time, but I was glad that they were away and focusing on their studies. I was home with mum and dad and had a lot of free time. This opened up an opportunity, to work in my family business with my dad and cousins. From this experience, I noticed that compared to before, working with my dad had brought us closer.
After university, I had drifted away and lost contact with most of my friends. I would rarely talk to them. Not as often as I’d hoped to anyways. This resorted to socialising with my lovely carers and their friends. They involved me and treated me with respects and authority, but at times it felt like we were on different wavelengths. For example, I was restricted to speaking in Gujarati and often felt out of my comfort zone. I used to get frustrated with them at times, but as mentioned earlier, they have offered me a tremendous amount of support and I’m grateful for that.
Joining the family business has been one of the major changes in my life. Simply Direct LTD, sells items through Amazon. This business was centered around my life and gave me that sense of purpose I was seeking after graduation. It was perfect at the time. I was given the opportunity to take on big responsibilities and utilise the skills learnt through my business degree, practising them in a real-life scenario.
We all need something to wake up to every day, a motive, a purpose. I found mine, and this is what made me, me!