My fight
I didn't want my disabilities to define me.
I don't often write about my disabilities and the problems they cause. Not because I am ashamed to admit I am disabled, I just think nobody would be interested in reading about my declining health.
However, several people have asked me to write about my condition, so here is the opening of my story. I may put this into a book later on.
My story starts in my days at school when my friends told me that I was an excellent storyteller.
At that time, I didn't realise my genetic heritage, who considers their genetics? Most people have no idea what lies hidden with their genes, why would they?
At that time, I didn't realise my genetic heritage, who considers their genetics? Most people have no idea what lies hidden with their genes, why would they?
Long ago, I realised something was wrong because when I cut myself I scar badly and my skin doesn't heal as it should, nobody told me what was wrong if they knew.
I think my mother had some idea what lay ahead for me, her eldest sister, Joan, has the same condition I have. Whether it was a choice not to tell me, or my mother didn't know, I never knew.
I think my mother had some idea what lay ahead for me, her eldest sister, Joan, has the same condition I have. Whether it was a choice not to tell me, or my mother didn't know, I never knew.
I never considered that I might have a heart condition, I assumed I slept on my left-side because I am predominantly right-handed, as I found out later, this and my non-sporting activity, probably helped keep me alive as I have a genetic flaw that caused one of my heart chambers to be malformed. My right side is only half-developed, which explains my shortness of breath.
The condition I have is Hypertrophic cardiomyopathy. In easy to understand terms, the illness causes a disrupted heart rhythm; this genetic condition is what kills some young (apparently healthy) athletes for no reason.
When I was at school, and in college, the easiest way to find me was go the library. I used to think this was because at an early age I realised that taking up sports as a lifestyle usually meant you had a short, and risky, work life. Since knowing about my condition, I wonder if my body was telling me something then, that I only realise now?
The condition I have is Hypertrophic cardiomyopathy. In easy to understand terms, the illness causes a disrupted heart rhythm; this genetic condition is what kills some young (apparently healthy) athletes for no reason.
When I was at school, and in college, the easiest way to find me was go the library. I used to think this was because at an early age I realised that taking up sports as a lifestyle usually meant you had a short, and risky, work life. Since knowing about my condition, I wonder if my body was telling me something then, that I only realise now?
I used to do sports, but I was more a distance performer than a sprinter. I put this down to being well built rather than being slim and agile, again, perhaps my body was telling me something.
From an early age, I learned to control my breathing as I knew something was wrong, I had no idea what lay ahead, and realise that now I do, I wish I didn't have the information.
It isn't knowing that concerns me; it knows how many flaws my genes hold that worries me. Until about five years ago, I had never been worried about having a blood sample taken, and then things started to appear, and I did get scared to have my blood checked, in case another illness got discovered.
From an early age, I learned to control my breathing as I knew something was wrong, I had no idea what lay ahead, and realise that now I do, I wish I didn't have the information.
It isn't knowing that concerns me; it knows how many flaws my genes hold that worries me. Until about five years ago, I had never been worried about having a blood sample taken, and then things started to appear, and I did get scared to have my blood checked, in case another illness got discovered.
One of my genetic illnesses is Ehlers-Danloss Syndrome. EDS in simple terms is the body's inability to produce muscle tissue healthy enough to support the joints; this flaw lead to me having a torn left ankle tendon, the right tendon is going to go soon, and needing wrist supports most days.
One rest that caused great concern for me was when the specialists thought I had Farby's disease. Farby's is a congenital disorder that builds fats up in the veins, and nobody knows what causes it, only that it is incurable and kills over 80% of the men who have by the age of 58; not a pleasant thing to be told two months after your 57th birthday.
I think hearing that news was the start of a new way of thinking for me, I started to think more about the things I would miss, like seeing my grandson grow up. That is something I know a lot about, we moved from our family home in Yorkshire when I was eight, and I never saw my grandfather again.
I stopped caring what people thought of me, after all, I was 55 at the time, and I am me, like it or loathe it, I am not changing who I am.
One rest that caused great concern for me was when the specialists thought I had Farby's disease. Farby's is a congenital disorder that builds fats up in the veins, and nobody knows what causes it, only that it is incurable and kills over 80% of the men who have by the age of 58; not a pleasant thing to be told two months after your 57th birthday.
I think hearing that news was the start of a new way of thinking for me, I started to think more about the things I would miss, like seeing my grandson grow up. That is something I know a lot about, we moved from our family home in Yorkshire when I was eight, and I never saw my grandfather again.
I stopped caring what people thought of me, after all, I was 55 at the time, and I am me, like it or loathe it, I am not changing who I am.
Being able to control my breathing helped me pass the medical to enlist in the RAF, this did cause another issue for me. I cannot prove it, but until the summer of 1978, six months after basic training, I had never suffered from a severe migraine. Now, I get them on a semi-regular basis. The pains are so sharp that I need to lie in a darkened room for several hours.
Another disorder that I think came from my basic training is I lost my sense of smell.
Our group was the last in the gas chamber. CS gas, when used in the open, is a harmless irritant, but we were subjected to a triple dose in a room with no air flow, so we had a highly concentrated exposure.
Another disorder that I think came from my basic training is I lost my sense of smell.
Our group was the last in the gas chamber. CS gas, when used in the open, is a harmless irritant, but we were subjected to a triple dose in a room with no air flow, so we had a highly concentrated exposure.
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