Without struggle, there would be no progress
Can you imagine your world turning upside down, everything you've ever known changing, feeling like you've lost all control, feeling so lonely, that it feels you're the only person in the world and ever will be?.. That's what being diagnosed with Ataxia feels like.
I said i'd not write a post on FA. But, it turns out, I am. I may sound over-dramatic in places, but i'm not. I didn't take diagnosis well I don't think. Not in a obvious, over emotional mess, kind of way. As in, I turned inwards and didn't want to discuss it with people. It sounds like a cliche, but I guess I couldn't accept it. Something had always been not quite right and apparently, so my family say, I always ran like a fairy!? Not that I understand that really, as Ataxians are not elegant people, whatsoever. But I ran weird, couldn't walk in a straight line or ever stand on one leg. However, I still did dancing, believe it or not. And for someone with not much balance, I wasn't too bad! Everyone just thought I was clumsy and lazy, after all, who'd want to think that a relation of theirs had some medical issue? It just didn't cross anyone's mind. Looking back since being diagnosed, I remember certain things I found difficult but I think, as a child you tend to just get on with it and push things to the back of your mind without realizing. I was always rubbish at sports, in P.E at school I always used to try and get out of doing it. I come from quite a sporty family, so it didn't make sense. I longed to be able to play tennis. I was rubbish, most of the time I couldn't even hit the ball. I remember once, I was walking to school with friends, I was about 11-12 years old and I was walking in front, which I didn't like to do even pre-diagnosis. My friend shouted from behind me "why can't you walk in a straight line, Laura!?" I turned around and replied, "I don't know", because I didn't. Another time, I must have been a similar age, we were doing a play sort of thing at school and we were dancing to "One night in Bangkok- Murray Head". As the intro continues to play music for a couple of minutes, we had to stand dead still, feet together, head down and lights were off. If you don't have Ataxia, just imagine being drunk and trying to do it. If you do have Ataxia, i'm sure you can appreciate how hard that was. Nightmare! I could go on about incidents that happened in my childhood, that were obvious signs that something was wrong, but what would the point in that be!? I finally got my diagnoses, and the fact that I didn't get it until 15 years old was a blessing. As I didn't know anything was wrong, I carried on normally. I'm not sure when we would've found out the problem, if it wasn't for me noticing my scoliosis. As a normal 12-13 year old girl does, I was checking myself out in the mirror and noticed my hips we're odd. My left hip was completely normal looking but my right one was curved in more. I went to show my mum and ask her. I remember her not being sure either so we booked a doctors appointment. At the time, I hadn't a clue what it could be and don't think I worried about it at all. The doctor examined my back and then told me I have Scoliosis-Curvature of the spine, I was 13 years old. He sent me off for some x-rays and then I had an appointment with a consultant at Southampton Hospital. Them waiting rooms were always so busy and almost every appointment we had there, was late. We saw a doctor, specializing in Scoliosis. He gave me the option of a back brace. He didn't think the operation was necessary, as he told me my curve would not progress after I stopped growing. I got fitted for the awful, hideous, uncomfortable, contraption! It was a huge, white, plastic brace, the size of my torso. It had foam padding inside for 'comfort'. I had to wear it 23 hours a day. I wore it for about 6 months in total and definitely not everyday. Maybe that was the reason for me having to have the operation But I don't care. It was an evil thing to wear, in summer most. In between these hospital visits, my mum had to began asking about my walking and we kept getting the same answer, "That will be because of the Scoliosis". Until one day, my main consultant noticed the way my feet shuffled when I turned around in a circle. Straight away he said "That's not down to scoliosis". Therefore, he referred me to a Pediatrician at Poole Hospital. The appointment was quite a few months down the line. I felt quite excited to be honest, as my walking and now my coordination began to progress, I didn't need to feel like I was crazy anymore. There was something not quite right and it was getting sorted, so I thought. I had to visit the Pediatrician a few times, so that he could carry out so many tests. These tests looked like the easiest things in the world. But for an Ataxian, kind of near impossible. Some things I had to do were; follow his finger with my eyes, touch my nose, then his finger, walk heel to toe, my reflexes were tested, etc. Including an M.R.I scan, which I did not like, one bit! One time I had an appointment and I remember, clear as day, the Pediatrician mentioned my speech being slightly slurred/slow, I was shocked and my mum appeared to be as well. This must have been going on for about a year and before that, doctors told us for a year that my back was causing all of my issues. I had an appointment to go for a blood test, little did I know, these results would change my life forever. It was about four months after the blood test that we received a letter to inform us that I had an appointment in Southampton Hospital, with a Neurologist. I had no idea what was coming, absolutely none. My mum may have had idea, but the diagnoses we got would have never even crossed her thoughts. Not long after we got the appointment I said to my mum, something along the lines of "When they've figured out what's wrong with me, I will be able to have an operation, won't I, to make me better!?" 15 year olds are so naive. November 12th 2007. My mum, my Auntie and I went off to Southampton. I don't have a single memory from that morning. My first memory was being called into a private side room with a neurologist and a nurse. The doctor began, he explained that I had a progressive, genetic, condition called Friedreich's Ataxia. It's incurable and there is no treatment, only for symptoms. These were just words to me, they didn't mean anything. That was up until he said the word wheelchair. "Most patients are wheelchair bound within 10 years of diagnosis." WHAT!? A wheelchair!? I went from a normal, average 15 year old to a disabled person in nano seconds. It was so quiet in that room that I actually heard my heartbeat through my chest, it felt like it wanted to jump out. My whole mind clouded over. What actually just happened!? I don't think I listened much in that room, I just heard the bits I wanted to hear..Not many at that point. We had to go down to the Heart Department, as one of the symptoms of FA can be heart complications, such as; heart thickening, irregular heartbeat etc. Okay, so now, I'm a disabled 15 year old girl with heart problems!? I got asked to take my top and bra off. So now, I also had no dignity. My heart is kind of fine and stayed the same for 6 years, as far as we know. That was it. This huge bomb shell had just been dropped on my life and all I could do was deal with it. Something I had symptoms for, for years, had just been pushed upon me in a matter of minutes. It felt like someone up in the sky said "This girl hasn't had enough shit in her life, lets give her some more to deal with." Yeah sure, I had plenty of doctors, family, friends, support from everyone. I knew it too. It just wasn't enough. I still had to deal with this myself, as it is mine to deal with. The same day was my best friends birthday. I didn't want to tell her the news from the hospital, but obviously, I couldn't keep it from her. As we were in the car on the way home, I texted my friends to tell them. I can't for the life of me remember what I said in that text, a brief definition of FA, I guess. Before hand, I had already arranged to go around my best friends house after I had been to the hospital. My mum and I both went, My friends mum and my mum had a cup of tea in the kitchen and me and my friend went to her bedroom. It was her 15th birthday and I wanted to be happy and up-beat for her, so bad. At first I did well, we talked about things I missed at school that day and celebrated her birthday.My mum then called up to me to say she was going and if I wanted to stay, my friends mum would give me a lift home later on. I agreed to stay and I tried to keep a brave face on. I didn't succeed for much longer, I broke down and just couldn't stop the tears flowing. After being really apologetic, I said I had to go home. I let myself into my house, sat on my bed, and cried my little heart out. It felt like I had hit rock bottom. It felt like hope, faith, happiness and joy had left me, and all I was left with was fear, sadness, hopelessness and despair. I don't remember my exact emotions, coping mechanisms, my moods or attitude. But I imagine, I became the devil child for a bit. Three main things got me through; family, friends and other Ataxians. Most of all, others with the same condition. A few months passed before I spoke about it properly but one day I decided that I wanted to talk with other 'sufferers'. My social worker provided me with info of a chat-room where I could speak with others. From then on, I made friends. I speak to these people nearly everyday. They are not substitutes for my friends, because I have them. But they are a big part of my life. These people understand EXACTLY how I feel, what I think etc. And to go from feeling so lonely, like you're the only person in the world to speaking with a load of people who 100% know how you feel, is such an amazing feeling. Everyone has their own, private battle with FA. But really, we're all fighting the same thing. Some resent it, become bitter and in denial about it. Others fully accept it and move on with their lives, not without it, but with it. It's a choice. There's always light, at the end of every tunnel.
Via Laura Bishop