M.E.

Throughout my short life I have already been given many trials to overcome, as have the majority of people at sixteen. One such trial has had a huge impact on my life and has changed it forever.

A few months after my brother was born he was put in quarantine with infectious bronchiolitis, but not before passing it on to the rest of the family. However, while he and my parents recovered, I only got worse. For months afterwards I was still ill and started showing other symptoms. After the doctors performed thorough tests on me, they found Myalgic Encephalopathy in my blood.

At first my parents did not know what to do, and, indeed, there were no real treatments given in Britain. The standard day involved doses of children’s Calpol and my dad learned to rub my legs, which helped dull the pain for a while.

On the pain: studies now show M.E. is a form of brain damage usually caused by serious infection, which affects protein production. The blood therefore cannot absorb oxygen efficiently and so the person with M.E. cannot gain sufficient energy for the body, and lactic acid builds up. In other words, the pain is like hitting the wall mixed with a serious flu bug, cramps and a bit of concussion thrown in there.

It sears the body like burning ice; slicing and squeezing like a snake of razors. It smothers and sucks out every bit of energy and weighs down with its lead bones. The serpent removes the host of their senses and hope. It wraps them up in a needled blanket, which removes the world of its beauty and replaces it with blinding daggers of light and the welcoming loneliness of the greedy dark.

The pain did not break me: my fellow human beings managed that.

I was diagnosed with M.E. at the age of four, towards the end of Nursery.

As I started Primary school, I also started becoming more aware of the many problems I was to face. Firstly, came attendance. M.E. completely wrecks the immune system so if somebody sneezed I would end up in bed, in agony, throwing up and unable to move. The teachers believed my parents did not care about my education ans were just letting me stay off whenever I wanted. They were constantly calling my parents in and writing threatening letters. They would not listen so my parents went to the doctors and came back with a formal letter detailing my M.E. to which they exclaimed: “You mean it is real?”

Even after that my school couldn’t be bothered to help me. They did not know what M.E. was, and didn’t care. Luckily, I was quite ignorant of this at first, and so were the other kids. That was, until Primary Three.

Up until Primary Three, I had a great best friend, and the other kids didn’t mind jigsaws. However, my friend moved and the kids became more interested in football and tag and Red Rover. They ranked themselves in strength, which wasn’t good news. For a while I was alone, until I plucked up the courage to ask some girls if I could join a game of tag. They accepted and I had a wonderful time. I was in agony, could hardly walk and was constantly being tagged without being able to catch up with anyone: but I had been accepted. I had a meaning, purpose and hope. It was great! Until the girls all came up and the ringleader said simply, “We don’t want you to play with us, you’re too slow and stupid.” Well, that hurt worse than any pain could. I simply nodded and walked away, found a wall and sat there, rocking, for the rest of lunch.

The same thing was repeated every time I tried to join someone. They rejected me, laughed at me, and tried to see how weak I was. They would hold doors shut with their pinkies and laugh at my pathetic attempts to open them. They called me an attention-seeker when I got pains. Their attention was the very opposite I wanted at those times. Eventually they ignored me until they got bored, or I said something. Then they would just laugh at me. They would hit me, or lock me in rooms, or bring my hopes up just to abandon me and laugh. The teachers were sick of my pleas for help, called me a telltale and got me into trouble.

Was it any wonder I stopped talking? For a seven-year-old that seemed the only logical answer to me.

I was forgotten. No one thought I could achieve anything – with my absences I was very behind. I was constantly told how worthless and useless I was – and I believed it. I became very depressed. My parents had people visit me to try to help me, but they just repeated, “I can’t wave a magic wand.”

School just got worse.

I was yelled at constantly for late homework, held back a year in Maths and a few of my teachers even bullied me. Even my parents grew tired of their pathetic daughter. In and out of hospital, absent more than present, substitute teachers treated me badly, and I started getting panic attacks. I was a burden on the world, a disappointment to my parents, and a nuisance to my peers. There was no point to life. I was so isolated. I no longer understood the world. I could barely communicate and all I saw was pain and cruelty.

I stood in the kitchen for hours, alone, where I contemplated and thought deeply. I was very close to a very stupid decision. Then I realised what I could do was up to me. All these people had thought me worthless, thought I could never achieve anything. I had seen many of my family pass on, and they had fought for me and had done great things. There was no excuse for making those other lives be in vain. I would make something of myself. I would show everyone. I could do anything. An overwhelming peace washed over me. My hope and faith were renewed. For the first time in seven years I had a purpose. I would make my family proud. I would live. I would live.

I was a smart child; I had to be to learn anything from the short times I was at school. I worked hard, passionately. I overtook people. It would be no easy road ahead of me, and I still struggle now, but I had determination. Many a time I have been labelled ‘lazy’ but that is one thing I am not. It took a lot persistence and hard work to catch up. Slowly, I gained more understanding. Though I had been given a bad hand, I did not deserve it. I had been given a challenge and I would overcome it.

I was still hurt and bullied, the pains still excruciating – but I would not give up. It didn’t matter if they thought I was worthless, only that I didn’t allow myself to become so. I would give myself meaning; I would leave this world better than it had been: I would help others, show others they were worth something and valued.

I soon discovered I had talents in Art, Drama, Understanding and even Maths. I caught up and soon others were asking me for help. I received awards and became the lead actor in the school show.

Really my message is: Don’t give up. Even when life has you down and is kicking you in the face, you’ve got to go on because everyone has hard times, in some shape or form. You don’t wait for some meaning to jump into your life – you have to go out there and make one for your self. It’s not easy, not at all, but it has to be done. We are only as weak as we allow ourselves to believe. My body may not be the best, but my mind is strong.

I am no better than anyone else and no one else is better than me and while different people have skills and flaws different to our own, we all have the potential to mean something and do something wonderful. The power is within every single one of us, and everyone should be treated as such.

We are what we make ourselves.

7 Responses to “M.E.”

  1. Bev Turner Says:

    An inspiring story from a talented artist. Keep up the fight!

  2. Dave Says:

    What an inspiring – and humbling – story. I’ve learned a whole lot of things I didn’t know about M.E. And what a graphic account of what it’s like to suffer from this disease. I’m embarrassed to realise that my ‘mental database’ still listed M.E. as a slightly doubtful condition, used to cover general weediness. And I suspect I’m not alone. Can we get this a wider circulation (even!) than this Blog?

    • Mrs C Johnston Says:

      Imagine my reaction when this was handed in as a Higher personal essay. Like you I had no idea what living with M.E. was actually like. I’d welcome suggestions as to how we might best share this with others.

  3. Claire Says:

    “You don’t wait for some meaning to jump into your life – you have to go out there and make one for your self. ”

    This essay is incredible.

  4. P D Says:

    I’m honoured that this is still up. Thank you for giving me a voice.


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