My disease: Friedrich's Ataxia

Walker

Being diagnosed of Friedrich’s Ataxia effectively ended my chances of going for higher studies abroad. I decided not to pursue with my studies anymore, as the disease was gradually making it more difficult for me to walk. After doing my A-levels at KGS I decided to give up my studies and concentrate on things that interested me. By this time I had stopped wearing a brace for my back and was now in the process of walking with a walker. The walker provided me assistance and prevented me from falling down in the beginning. With the passage of time it apparently got more tough for me to use the walker and I was beginning to fall down a lot.

Symptoms of Ataxia

I was again examined by the doctor to find out the reason for my falling frequently. I had been told that I had Friedrich’s Ataxia before and was told that my lower muscles were weakening and I got the shocking news that I would be transferred into a wheelchair. With that also came the news that I might not be able to walk again. Friedrich’s ataxia was a genetic disease and it caused progressive damage to the nervous system. It had a number of symptoms involved including loss of hearing, speech problem, etc. By the grace of God I have not had these symptoms effect me too much. There are slight traces of some of these symptoms which is natural but on the whole I have lived a problem free life. Things are very different these days compared to the old times. There has been so much progress in medicine and there is so much research going on in the field of ataxia, which makes me so optimistic about this disease being curable in the near future.

Swimming

The doctors examining me each year in England are very delighted by my progress and have asked me to keep it up. They are very impressed by the fact that I swim regularly and do up to 20 laps. Swimming has been my passion and I get a great deal of motivation from it. The doctors have also me to lose weight to make life easier and more comfortable for me. I do know the lighter I am the easier it will be to manage myself and for other people to handle me. The encouragement I used to get from the doctors used to make me and my parents very happy and used to be reflected in our attitude in general.

Transfer in a Wheelchair

It indeed was totally different in the olden times when I was told about having to transfer in a wheelchair and having been told that I may never be able to walk again. It felt as if my life had come to a standstill, with all my ambitions and dreams shattered. I was 20 at that time and in the prime of my life. The first thought which came to my mind was “ Why me”. At that time nothing seemed to make sense to me and I was totally depressed.

Going for Trips

I remembered the time when I had no problems and took pleasure trips abroad with my parents and their friends. We went to the US and really had quality time there. We visited Disney World and I remember going to Las Vegas, seeing all their grand Casinos. It really was a memorable and enjoyable trip. This trip for the record was taken in the mid-eighties. Another trip where I had a lot of fun was during my visit to the northern areas of Pakistan. I totally fell in love with the beautiful hilly and mountainous Nathiagali. The best part was the lovely weather and the fresh food. That was indeed the highlight of my visit.

During the eighties before being transferred in a wheelchair I remember making a number of trips to America. During that period I remember also visiting my friend in Boston who was studying there. We had a great tine together doing a lot of sight seeing and he showed me the campus of Bentley University where he was studying. These really were memorable times I had and was left to wonder weather I would have the same fun and enjoyment being in a wheelchair.

Advantages of a Wheelchair

It took a lot of comforting from the doctors who told me the benefits of being in a wheelchair. The benefit of going from one place to another quickly thus minimizing the risk of falling down and hurting myself. New hurdles and obstacles had begun to come in my way including stairs. I realized the advantages of being in a wheelchair and decided to take it up as a challenge. Living in Pakistan on a wheelchair was not easy with Pakistan not at all catered to the physically challenged people. People used to stare at you as if being in a wheelchair was considered a crime. When I look back to those times, I made the grave mistake of allowing people to feel sorry and having pity on me.

Support of my Parents

I have come a long way and have learnt a lot from those instances. Nowadays I totally despise someone having pity on me. I have been fortunate enough to enjoy the best of things including clubs, going to the best eating places and able to afford going abroad every year. All these things had a very positive impact on my life and made it more worthwhile living. For this I am grateful to my parents who made sure I had all the benefits and advantages available to me being in a wheelchair. Naturally it was very difficult for them to see me transfer into a wheelchair, I being the only child of my parents. It has been through their tremendous support and encouragement that has enabled me to be where I am today. They have always stood by me at all times and have always tried their very best in trying to make me happy and content in life.

Having a Positive Attitude in Life

In the beginning this wheelchair felt like a prison for me because it confined me from where I wanted to go and prevented me from what I wanted to do. Like they say it is not the problems that determine your state it is your attitude towards it. If you can stay cheerful when confronted with a problem half the problem is automatically solved. It is also very imperative to have a positive attitude in life when faced with an obstacle in life like I was. Here I would say that being the only child of my parents definitely made life tougher for me in the beginning. The reason for that all the attention and focus being on me, which made me feel awkward and nervous at times. Of course there was the advantage of enjoying life to the fullest on my own and the immense freedom I had of being on my own was huge. It meant that being the only child gave me a lot of confidence as to how to live your life alone for the future.