Discovery of MERRF
The best part about having a chronic, incurable medical condition is that you get to, and should live every day to its fullest.
When I was a growing up I was a healthy boy who loved being outdoors playing sports with his neighbors, wrestling with his cousin and doing it all with all my other good friends. I would play Red Alert and Red Alert 2 with my brother - running between his room and mine to go over our strategy And, every summer my family would take a vacation with our close family friends. Oh, what a childhood I was given. It was probably the best anyone could ask for. Vacations, friends, school, health, food, a loving extended family, and much, much, much more.
The main theme of my childhood was being outside with whomever, playing with whatever I could find. It's painful to lose what I loved most - being active and carefree.
Myoclonic Epilepsy with Ragged Red Fibers was medical jargon spoken to me by some fancy Dr. I have had to explain what MERRF is to way to many people over the past 19 years. What continues to happen to my body is where the horror of MERRF is to me. My therapist said if she were to give me a diagnosis it would be chronic PTSD.
All the characteristics of MERRF can be horrific. My parents had asked me if I was relieved to finally know what I had. What did I give a fuck!? I just wanted to be normal, but what that mean anyway? I hear the saying all the time "We all have something, right?" well for me I don't agree.
The saying should be "We all have something we're great at, right?"
When I was a growing up I was a healthy boy who loved being outdoors playing sports with his neighbors, wrestling with his cousin and doing it all with all my other good friends. I would play Red Alert and Red Alert 2 with my brother - running between his room and mine to go over our strategy And, every summer my family would take a vacation with our close family friends. Oh, what a childhood I was given. It was probably the best anyone could ask for. Vacations, friends, school, health, food, a loving extended family, and much, much, much more.
The main theme of my childhood was being outside with whomever, playing with whatever I could find. It's painful to lose what I loved most - being active and carefree.
Myoclonic Epilepsy with Ragged Red Fibers was medical jargon spoken to me by some fancy Dr. I have had to explain what MERRF is to way to many people over the past 19 years. What continues to happen to my body is where the horror of MERRF is to me. My therapist said if she were to give me a diagnosis it would be chronic PTSD.
All the characteristics of MERRF can be horrific. My parents had asked me if I was relieved to finally know what I had. What did I give a fuck!? I just wanted to be normal, but what that mean anyway? I hear the saying all the time "We all have something, right?" well for me I don't agree.
The saying should be "We all have something we're great at, right?"
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