The best way to care about someone or something is to share knowledge with or about it. This is just one of the reasons I started writing. However, before I jump ahead I need to revisit the day I received my diagnosis’s.
I was diagnosed with FHL1 Gene Mutation a rare form of Muscular Dystrophy from the Myopathy family in the early 2000s. I remember getting a letter though the post for an appointment to attend a clinic at my local Hospital to meet with a neurologist who would “explain” my results with me.
I already knew what two little words were coming my way, I had known for several years – was I just too stubborn or burying my head in the sand and ignoring what my body was trying to tell me. Yes. ABSOLUTELY!
I have always believed that knowledge is power, You could understand if I said I started searching for answers immediately. What was this disease, and how would it affect my life? But no. How did I know what two little words were coming my way, I’m no doctor or specialist, who was I to just assume I had Muscular Dystrophy. Well, so many of the signs and symptoms I had been displaying over the years made sense. There was no puzzle piece to put together. I was going though the same symptoms and body changes my mum had when I was growing up!
Meeting with the neurologist I was alone, I wouldn’t recommend doing this regardless of thinking you know what’s coming. I was fortunate to have a neurologist who at the time was thought to be one of the best in his field. He was blunt, which I appreciated, and who really needs a doctor who go around the houses before getting to the point. Not me. But he did have a caring nature also that wanted me to understand his team would be with me every step of the way. There was a neurologist specialist nurse who worked within the community in the appointment as well, and she would be on hand when ever I needed advice or help accessing other specialists.
Muscular dystrophy wouldn’t affect my mental capabilities, but my physical abilities would be affected over time. Also recommended was speaking with a physical therapy, to get an exercise plan to keep my muscle memory as healthy as I can and all my muscles moving.
After arriving home I didn’t have anyone around to explain the diagnosis, it was just me, myself and I. There was no heart-to-heart conversation about the future and what was going to happen. What I did know I didn’t want to be a burden on anyone’s future. I would just like to add I am very fortunate now to have my hubby in my corner, and we have now been together 15 years married for 7 of those.
Choosing to start my journey with Muscular dystrophy alone was my choice, would I make that decision again I honestly couldn’t tell you as it has been apart of the journey to who I am today and one of the reasons I choose to write ‘My Life, Kerry’s Way’. I realised that while knowledge is indeed power, a lack of knowledge is weakness. I vowed to share my knowledge to educate as many people as I could. No one knows everything, but everyone knows something about some thing.
Sharing knowledge benefits both the receiver and the recipients of the information. The more one shares, the more they believe and know. If knowledge is power, a lack of knowledge is not a lack of power, but ignorance. Therefore, the desire to learn and help others is there, not every diagnosis is the same, not every disability is the same, but to be able to share my experiences is sharing my knowledge.
Muscular dystrophy is not a stigma. It is a part of who I am. I could take this in one of two ways. If FHL1 is an enemy, not having knowledge about it will only help it win. Secondly, if it is a part of me, then I should know what that part does. Regardless, knowledge is important. The more you know, the more you realise the more you do not know.
Until next time.
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