I’m getting used to the words incurable, painful, and the sentence, “Its hard to diagnose and difficult to treat.”
You started off in my life as bouts of severe fevers, headaches, swollen glands, and many missed days of school. I was four. When I started secondary school the stress of the change encouraged you to grow, you became all the more vicious. i missed so much school and then that same year my great grandma grew sick, the worry, stress and grief was something you fed off of, you stormed my body like an army, I cried from grief and from pain, i could barely move, days, weeks, months off of school, so they started to call in the social workers, dragging me out of class to meet this smarmy women who was determined to convince me i was fine. The odd day I made it there my teachers gave me disapproving stares, my friends were used to me not being there, The only place i wanted to be was at home.
We’d always talked about homeschool, but the talks became serious that year, and i remember one night, the tears drying on my face as i crawled into my bed and begged my mum, making her promise she’d take me out of school. I’d never wanted anything more, I was desperately unhappy and in your horrible grip.
there have been a few moments in my life where I’ve known that something has to give, in this case it was school. I still stand by that choice, in the following months people tried to convince my mum and I to just change schools, my grandparents even offered to pay for private school, but I felt so relieved to be in control again,You and I started to find a balance. I thought this was it, That I’d just have to wait you out, doctors kept telling us you were difficult to treat, but most of the time kids just grow out of it like you were a pair of jeans my legs would get too long for.
On the 28th of february 2007 at about 4 o’clock, i spent the day with my aunt and grandma,up until that point my aunt and i had been arguing, but things were starting to improve. but the stress had made you particularly vengeful, we hadn’t gone far, hadn’t done much, but I was tired and on the way back my neck started to twinge and ache, it was so painful I started to loll, tired from the sudden shock of spasms, i reached my hand up to ease it and found the main tendon on my left side was stood proud, It would spasm and dance beneath my fingers, the tendon as solid as steel.
All of a sudden on the 28th of february at about four o’clock, I couldn’t turn my head.
We made an emergency appointment at the doctors, a man who wasn’t my usual doctor looked it over, frowned and said, it should be gone in three weeks.
I couldn’t stand the thought of three weeks of this.
Three weeks passed.
Three months passed, they started to say words i didn’t understand like torticollis, dystonia, MRI, and that long dreaded word, incurable.
I don’t even know why they would use that word, do they not know what it triggers in a person? how bleak it is? How final it is. INCURABLE.
From that I spiralled down, I tumbled onto rock bottom, and lay there wishing death would take me.
They tossed me from specialist to consultant, and back again, put my in giant washing machine type scanners, and made me stand there for X ray after X ray. Trying to find a cause to something they didn’t understand. How you complained M.E, how you brought in your friend and you sister, how you fed from the experience like carrion picking at my bones.
In that year and a half I was put down, shamed. The weight I had gained from your persistent fatigue was picked apart and blamed, But they didn’t want to hear me when i said it was you that came first M.E. They just wanted something obvious to blame.
I choose to starve myself, but when that didn’t work I would feed myself and throw up, when one particular Consultant told me to go away and eat healthily and then he might take my pain seriously I went away and didn’t eat anything, because if salad and veg wasn’t healthy then nothing was.
I didn’t lose the weight, my body became confused started gaining more weight when i ate just a tiny bit, it was in a constant state of panic and unease.
At the end of 2007, your friend depression screamed the loudest, Incurable resounding through every living moment, until dreams became painful to live through because i was well in them. After one particularly happy dream I woke and knew I couldn’t take it anymore, I stode downstairs into the empty house and started to write a series of letters, goodbyes to the people i loved most.
That person, sobbing on the kitchen floor, you made me that M.E, you and your friends you reduced me to that. I would not be alive today if not for one of my neighbours running past the window and shouting to his brother “don’t be an Idiot” or something along those lines.
In a flash I had a spark of hope and stopped. But it wasn’t over, its never really over with you.
In the 7 years since I’ve gained maybe an inch of movement in my neck through various treatments, but it has also spread into my right thumb and jaw, I don’t know when i resigned myself to the word incurable, but its seems to be deeply ingrained into my life, they may as well stamp hopeless across my forehead.
In the last few days I’ve had to face that word again, after a series of fillings I started to get white hot, electric shock type pains across my jaw. The dentist has just assumed its the TMJ, but I have never felt anything like this before, Its like someone sticking a lightning rod in my face. So as one does II fell into google, you know, the google that convinces you, you have cancer because your little toe hurts, but here i found TN with the exact description of the type of pain I have been suffering, and again that word Incurable cropped up to haunt me.
I’m hoping this is just a fleeting thing, and soon it will just fade like a lot of the pains i have suffered over the last few years. But just the mention of teh word incurable and I fell once again fourteen facing a life sentence with you and Dystonia and all your friends.
And sometimes i want to be a kid stamping my feet and screaming its not fair. Because this life sentence isn’t fair M.E, why me? why anyone? why could you not just target serial killers and be a certain strain of disease that riddles the guilty, but you seem to grab teh innocent, and vulnerable, and make us yours, sentence us to this marriage, to a life time with you.