I need to say this.
Sometimes it is not due to our lack of positive attitude or our lack of trying, or our emotional attitude that we cannot do things. It is often due to genuine physical limitations. No one should feel that they have to push themselves in order to convince others that they are adopting a right attitude.
I am tired of hearing the word “positive.” I am tired of being judged by those who do not have my condition. There are not always happy endings in life. Sometimes life is a downright tragedy. This is so in my own case.
I am often judged on what I do or what I don’t do.
Six years ago I nearly died. I was literally at death’s door, with massive tumours in my neck, pressing on my windpipe, my back, my lungs, my abdomen, and going into my liver. One tumour that was large was resting between my left lung and my heart. Another was resting on my aorta. Either of these could have killed me at any moment.
I fought the cancer whilst being badly abused by my mother. I was fighting a mental as well as a physical battle. I was not surrounded by loving friends and family. I was alone in my fught. It was a horrific fight.
I eventually went into remission. I am not cured. But I was left blind, unable to walk, with no feeling in my hands and feet and my legs too. I am wheelchair bound now. I have fibrosis of the lung. Thus means that I have little breath and therefore breathing issues. I become completely unable to breathe after simply brushing my teeth in a morning. Going to the bathroom exhausts me. I have to lie down on the bed for half an hour before going back into the bathroom to wash. Remember Iam blind too, so this is no picnic.
My heart us also affected, as are my bowels. Yes, not a pretty thing, but true. Going out is a nightmare. I can needbto go to the bathroom at the drop of a hat. I have to get there very very quickly. This is a hazard for me. I have never mentioned this aspect of my life before as it is a bit blunt. But it is true. Can you imagine going to a toilet in a strange place, blind abd in a wheelchair? I once got stuck in one because I could not find the lock to get myself out. This because I could not see and have no feeling in my hands.
Despite all this, at first, I played my flute at Mass on a Sunday in my local Church. I led a Children’s group playing instruments. I have given talks and lectures. But all this had to stop a couple of years ago when I became too ill to do it.
Since then my life has become much much harder. I can no longer go to my Church. I am too sick.
I have self published five poetry books. The proceeds were guven to my cancer Association. I used to go to Craft Faurs to sell them, but that is no longer possible.
My attitude has always been to push myself. Sadly, that was the wrong thing to do. But there we are. I did it. I felt a pressure to do things. To try and walk again. It was the wrong thing to do. Mi was then warned by my Medical Rehabilitation Consultant NOT to try to walk. I have no balance at all. But also very little muscle left. This cannot be helped by physiotherapy or exercise.
I used ti be a walker and climbed mountains, cycled, swam, went to the gym.
I have come down to this in six short years. I have no future. I am told it will get worse.
There can be no happy ending for me. But I manage. I have bad days. I have black days. I use humour on those days. It is amazing what you can get through with humour!
Sadly, society seems to think that uf I decided I wanted to do something, I could do it. If I had a positive attitude I could get much further and much better.
I have to learn to live with this and accept it. Not go for some unattainable pipe dream. This IS, me. It is as I am now. I don’t like it. But it is as it is.
I am TOTALLY dependent upon others. This often makes me feel like a non person. I cannot choose or decide for myself.
This afternoon, my husband nearly broke. We can get no help, and today he collapsed inside. It was awful to see. We have tried to get help but can’t.
And so, you see, to tell me to be positive, or to believe in my dreams is counter productive. I am not going to improve, but deteriorate. I am slowly dying. And, given that, if I write about death, that is what I write about.
Am I scared! YES, I am shit scared. I am scared of dying. I am honest.
I needed to make my position clear. It hurts to be told to have a positive attitude. I don’t think I have done too badly so far. And it may also have been noticed thatcI write about joy a lot. About nature, and beauty. Darkness and light are not mutually exclusive. The two can walk tigether hand in hand.
ok so ket’s get on with my poens!
Sent from my iPad