Dear Oprah
I'm absolutely inspired by many of your stories featured on your show and would like to share mine with you. I'm 37 years old and live in the United Kingdom and have a rare disorder called Friedreich's Ataxia (FA). It's a genetic, neurological, slow progressive disorder which affects the cerebellum of the brain that affects motor actions i.e. the ability to walk and sadly also my speech and many other actions that involve co-ordination however, it has, thankfully, no affect on my intellect. It is estimated that 2000 people have FA in the United Kingdom (http://www.ataxia.org.uk/). I'm not certain as to how many people in the US have it but I do know that 150 000 people are affected with various types of Ataxia in the US. (http://www.ataxia.org)
At the age of four we immigrated to Bulawayo, Zimbabwe, and at the age of seven my parents noted that I was a little clumsy and was checked out by a paediatrician. He did not have the facilities at the time to give me a thorough investigation and referred me to a hospital in Johannesburg where they were better equipped. My condition at that time wasn't very noticeable and my parents thought I might grow out of it. When I was 8 my step mom had her first born, a baby girl named Simone. I have a three-year-older brother and a three-year younger sister and then came my stepsister.
At the tender age of three Simone was sadly diagnosed with Leukemia (cancer of the blood). Because of the lack of medical resources she was also referred to Johannesburg. Now at age 11 my problem became more noticeable and so it was decided that I would go with Simone to Johannesburg. My three-year-old younger sister, Michelle, was cleaning her room and spilt some household detergent on the globe in her bedside lamp. As she looked in her lamp, the globe burst and perforated the cornea of her eye. At the time she was fine but the very next day she was blind in her eye. She was rushed to an eye specialist who referred us urgently to an eye specialist in Johannesburg. My dad drove all three of us, including my mom, in record time to Johannesburg. Michelle saw the eye specialist the same day that successfully performed laser treatment on her eye the very next day. She regained 60% of her vision in her eye. Simone was placed under a group of specialists and they decided that she needed chemo therapy to hopefully put her back in remission and was admitted to the Johannesburg General Hospital. There were a group of neurologists who gave me a number of tests to evaluate my condition and the final diagnosis was Friedreich's Ataxia. I knew after reading relevant literature that one day I would be confined to a wheelchair but being as young as I was and still doing what any ordinary kid did made it hard for me to believe.
Simones treatment lasted six months and I couldn't believe the pain she went through both emotional and physical. She had lost all her hair due to the chemo and she threw up more times then I could imagine. She battled to eat and became very thin but her determination to fight this illness was remarkable. She was fed through an intravenous drip and she was given blood many times to boost her red blood cells. Her little bruised arms were proof of the many times needles were inserted in her arms and I still hear her crying in pain. The day we had all longed for had finally come; Simone was now in remission and could go home. Her red blood count had to be watched very carefully and back at home in Bulawayo it was monitored weekly. We heard the news that we didn't want to hear she had relapsed. My parents had decided to take her to Cape Town childrens hospital. After another three months of hospitalization and another course of chemo therapy she was again put into remission but when she came back home she fell out of remission again. The doctors had said there is not much more they can do and only gave her a matter of time.
A week before my 13th birthday I saw all the lights in the passage were on and I heard my mom come into my bedroom and say to my brother, Simone has gone. I didn't want to believe what I heard and wished it was a bad dream and tried to go back to sleep. I broke out into a cold sweat that woke me and all the lights were still on. I got out my bed and walked down the passage fearing the worst. I walked hesitantly to my parents room, opened the door slowly and saw Simone on my parents bed with a cloth in her mouth and then I knew.
Seeing what a beautiful, innocent child went through has made my family mentally incredibly strong and if I hadn't been witness of the pain and suffering that Simone went through, I don't think I would have handled my illness the way in which I do.
My fight against this illness really started when we immigrated to South Africa, Durban in 1988. I was always a physically active person like my brother and sister and rode to school in Zimbabwe everyday that was 5km there and vice versa. In South Africa the roads are very hilly whereas in Zimbabwe the roads are very flat, so riding in South Africa was out. I was enrolled in a school in the suburb of Westville called Westville Boys High. Being in a normal school all my life made my enrolment no different; however the people at school in South Africa were different to my schoolmates in Zim. These people werent as friendly or as understanding like the people in Zim. After one month of getting to know my peers they excepted me as I was and treated me no differently to anyone else but people in the rest of the school gave me a hard time. I persevered and pretended that I didnt hear the comments from the others. After many days of being depressed by the continued pressure of school and trying to keep my chin up and to pretend that I wasnt hurting, tore me apart emotionally. My first year at school was extremely hard but I got through it. My second year was the hardest time ever imaginable as I contracted a bad bout of flu and was laid up in bed for two weeks. When I was strong enough to get out of bed I realized how bad my condition had progressed. I had lost allot of feeling around my mouth which made it hard for me to talk and my ability to walk had been reduced to a person who looked like I had been drinking. I seeked help and saw a neurologist who had said because I was physically inactive for a period of time, my condition had rapidly deteriorated. He compared me to that of a car that had been sitting in a garage without any movement. After a while the battery goes flat but it can be recharged unlike my body, the damage caused at the moment is irreversible. I suggested that I should join a gym but he said I should not expect much muscle growth and he advised that I do swimming rather. Being young and as determined as I was, I was not about to let some illness destroy my life.
My dad bought a home gym that I pounded each and every day to the point where I had gained impressive physical strength. I went back to school but my physical abilities had dramatically changed and my illness was now obvious and the elder boys at school mocked me. The continued mocking left me in a deep state of depression that had a major effect on my grades at school. I was left with no choice but to join a physically disabled school. Being in an abled body school all my life made it very hard for me to except this environment but after being there for four days made me realize that this was where I belonged. A school that accepted me for what I was and who I was. I was not only in a school with physically disabled people but also with people with learning disabilities called Dyslexia.
This school showed me the true meaning of determination, perseverance and dedication. My disability compared to most of them was not a disability but rather an illness they would rather have that made me appreciative of my ability and not my disability. One year of my schooling at this new institution had gone by but I lacked self-discipline and so did the school and I miserably failed the year. A New Year had begun and with it came an introduction of new pupils and all of them only had learning disabilities, which I soon made good friendships with. There was a girl amongst these new pupils whom immediately I was attracted to. I soon found out her name, Bianca, what a beautiful name for a beautiful girl.
I eventually found the courage to ask her out and to my surprise she said without hesitation yes. I admired her beauty and told her everyday how beautiful she was. I couldnt find any fault with her looks, body or personality she was simply awesome. At first, Bianca for me was an attraction but as I got to know more and more about her I started to fall in love. Everything around me didnt seem to matter as long as I had her and my grades started to fall, my concentration in the gym affected my routine and eventually I gave it up. I became intimately involved with her and then obsessed. Nothing in the world could have stopped me from being with her and if I had to lie my life down for her I would never had thought twice. I had a problem with her parents as they didnt like me, not because I wasnt manner able or respectful, but because they were Afrikaans and it was hard for them to understand my condition. Bianca became distant from me because of the influence of her parents and after two years of giving this girl everything, including the love of my heart, she broke up with me.
Seeing her everyday at school made it extremely hard for me not to talk to her but I could never be her friend because what we shared in the past was far greater than any friendship. I tried to make her understand that my life without her wasnt whole but her parents had a greater influence on her. To this day, I dont know if she was trying to spite me or telling me to get on with my life but she soon went out with my best friend. This had triggered every emotion in my body to run wild that brought me to the state of almost suicide. I spoke to my friend everyday but not once did I mention to him that what he was doing was killing me. My silence had caused me to fall into the deepest depression you can imagine and made me lose so much weight and interest in everything and everyone.
One day while watching TV I saw a poem lying on the coffee room table that after reading changed my life around forever. I was so inspired by it that I learnt it by heart. This is how it reads.
Follow your dream
Follow your dream
Take one step at a time
And never settle for less
Fast continue to climb
Follow your dream
If you stumble, dont stop
And lose sight of your dream
Press onto the top
For only on top
Can we see the whole view
Can we see what weve done
And what we can do
May we then have the vision
To seek something new
Press on and follow your dream
Everyday when I saw Bianca it was admittedly hard for me to except that she was happy but I now had to control my own life and follow my dream. Being on my own is hard but to let someone be witness of every day of my life would even be more heart breaking for them as its for me. Ive made a decision in my life to fight my illness on my own because my experience with Bianca left me so heart sore and its something I never want to go through again.
Knowing in the back of my mind that one day I may be confined to a wheelchair motivated me to become an addict of the gym at home. Doing gym everyday helped me mentally and physically and I began to focus all my positive energy into my self-being. My dedication in the gym was taken a step too far and I became a gym holic. I wanted to have one of the best builds that I had seen in glossy magazines and nothing was going to stop me from achieving this. Being young and naive I tended to believe that what I read in these bodybuilding mags was the only way to build the body I wanted and the main emphasis in these mags, to me, was diet. I read countless articles by past and present, Mr. Universe, Mr. Olympia and Mr. America and they all had one thing in common, their diet was an average consumption of between 4000 and 6000 calories a day. They had said, time and time again, that to train big you have to eat big and to get quality muscle youve got to eat quality food and so my gym make over started. Consuming 4000 calories a day is a hell of a lot of food but I did my best to try and do it. I learned that cooking food made it lose its goodness so I tried to eat what I could in its raw state, like eggs, fish, potatoes, oats etc. I ate small 6 meals a day conforming to the right guidelines of consuming so much fat, protein and carbohydrates. Now that I had the correct diet and a gym routine that suited me I was destined to make my dream body a reality.
In the beginning I made impressive gains and really attained a hard, firm body reaching a weight of 80kgs (160 pounds). My illness started again to progress and the diet I chose my body started to reject. I became extremely fatigued and my training was made impossible and most nights before I went to bed I started throwing up. I decided to lay off the gym momentarily and drastically cut back the intake of my calories. All this happened in my final year of school but my determination and continued perseverance got me through.
Now that school was behind me I had to make a change in my life and adapt to the working class. For the first year of my career I gave up the days of my training and my strict diet and focused directly on my work functions. My career started in my Dads import-export company mainly doing his accounts for him on computer. I was fascinated by the ability of the computer and wanted to learn all of its capabilities but my function in my Dads company left me very frustrated. I decided to leave my Dads company in 1996 and further my computer skills. I did an introductory course to Windows and MS Office and have never looked back.
In the early months of 1996 I joined for the first time a corporate gym. By this time my walking ability had been reduced to the aid of using a crutch for the use of balance while my left arm was used mainly for co-coordinating the movement of my legs. The gym is situated at the back of the shopping centre so it was quite a distance to walk from the entrance of the centre. Soon all the shop attendants of the shops on the way to the gym got to know me but at first they all stared at my awkward walking ability. They often told me how amazed and encouraged they were by my dedication and they were always willing to help me. Ironically their words of encouragement made me even more determined to achieve one of my dreams and that is to walk.
Soon, I became a close friend of one of the gym instructors who understood my determination unlike anyone that I had ever known. He trained me everyday and we soon developed a strong friendship, he gave me reason for reason. We often went out to movies and clubs and I was amazed by his pride he had for me and was always eager to introduce me to his friends. He left the gym in 1997 and went for a working holiday to the United Kingdom and have not seen him since. I was confined to a wheelchair in late 1996 that made life for me much easier but I think Glyn thought that I had given up my fight and he felt betrayed by me. I was so touched by Glynns disposition in life that he would be definitely one of the people I would walk for.
In October of 1996 with my computer diploma in hand I wanted to be employed in a corporate environment but being confined to a wheelchair made it very hard for me to seek employment. Through a friend of mine I was put in touch with a reporter of the daily newspaper who after taking an interview and a photo of me was placed in the paper. The first person to contact me with regard to this article was a lady from the corporate banking environment who offered me a temporary position in an administrative department. Two days later, I received a call from a director from a worldwide confectionery company who offered me a 3-month contract that turned out to be 3 years and 4 months. What I learned and had been taught in Information Technology made me follow the path of computer programming and so I resigned to join a company dedicated to programming and one which was unbeknown to me only a five minute drive from home. Due to my lack of experience in this field I soon felt pressurized and the accumulated stress exasperated my illness. After being in the company for only 6 months they had made the decision to relocate and thats when I decided there and then to resign.
I have noted with great interest the increasing advancement in medical break through and feel after reading recent reports of Ataxia that a cure is inevitable. However, because Ataxia is a rare condition the money injected into research is incomparable to the money raised for other more widely known illnesses. The fact is that Ataxia isnt a priority but Im willing to make it one. I have lived 37 years with this illness and enough is enough, its time to make my dream a reality.
I remain an optimist, an achiever, and a fighter. This illness wants a fight; I'm giving it a war. I used to believe that one day I would walk, I don't anymore, I now know it. I'm going to walk for Simone, my family and for everyone that knows me. This illness has deprived me of so much, the ability to drive, to do so many things without having to rely on others, to walk, to run, my independence but although it has taken so much away from me it has definitely made me a better person. It has developed my patience, my determination, my perseverance and my attitude. People dont realize what they have until it is taken away from them but by then its to late. All I am is a young man who is trapped in my body and all I want to do is be heard and understood.
The main idea of telling you my story is to make you aware and many others of my illness, Friedreich's Ataxia (FA). I sincerely believe if people are aware and understand the severity of Ataxia's and know that research is on the brink of finding a cure soon; then people will be willing to contribute to research to speed up the break through. I have created a charity page (http://www.justgiving.com/1pound4fa) that soley donates money to my charity (http://www.ataxia.org.uk)
Oprah, I think your shows are truly outstanding and watch them religiously. I wish you a continued success and all the best in your future.
Kind regards
Darryn Smith
Please click here to watch a video clip on a introduction of Friedreich's Ataxia
and my american based charity
