Thoughts of a Dying Atheist

Ok I may not be an atheist; in fact I do believe in God and spirituality and pray most nights. Otherwise the title sums up how I am feeling – like I am departing the everyday world in both a physical and spiritual sense.

I don’t mean that in a morbid way – I am not unhappy nor depressed, I am blessed with some wonderful friends. But I no longer feel a part of this life as most people know it, of this beautiful planet. The world I live and exist in is far far different from those that most people walk in. I don’t mean that either in the sense that I am depressed, it is a physical feeling and an observation I noted whilst driving down the road to the doctors this morning.

The very physical symptoms of this disease alter our consciousness and the perception of the world we live in. I am used to doctors reporting to patients that symptoms are either imaginary or a powerful product of our brains ability to allow the body to physically mimic its thoughts. Only one doctor has ever said this to my face – all my other consultants, some being useless whilst the rest being pretty slow and getting most of their facts wrong, have pinpointed causes for all my peculiar symptoms, from the first, the now infamous Dr Andrew Wright in Bolton who arranged for me to have my Mitochondria tested and discovered I have mitochondrial dysfunction, to the brilliant Endocrinologist in Cape Town and Professor Mathias and Graham who told me about my seizures.

The type of nervous system disease that M.E is – it’s incredibly hard to describe unless you have experienced it. I don’t even know if MS patients experience the same thing. You’re sensory and motor skills slowly wind down and you operate like a toy whose batteries are winding down and about to die, only there are no batteries to charge or no switch to wind.

Whilst driving through my pretty little village, I watched the people walking to the shops, carrying bags, playing with their children and thought it is not a world I can relate to nor understand anymore. Watching them I felt physically so ill I was detached from it – like I was watching a film. The people had blurred outlines and appeared to be in slow motion. The sun was shining and reflected off them, giving them a sense of awe and mystery – it was a very peaceful feeling watching these people. When your sensory and visual modes are disturbed and your motor functions no longer work right the world is a very different place from what you remember.

Roads appear forever stretched; a blurred entity that feels like it goes on forever. Every part of my body whilst sat in that car seat felt detached from all the other bits. My legs felt like foreign invaders, they had no purpose and didn’t belong there. And who put 10 kilo weights on my arms, neck and legs? Trying to manoeuvre with these weights in place is somewhat tricky and makes walking almost puppet like and jerky, like Artu Detu.

Whilst in the waiting room, every second felt like an hour and as I sat up in the chair, I could feel the weights compressing my spine, every inch of me wanted to scream out in pain or throw myself on the floor to get rid of this heaviness that had taken over. The other people felt like actors in a play, puppets just put there to remind me that their world is not real and mine is all too real.

Sweat began to trickle down my face and back and then the nurse called me in, giving me a strange look as she passed. How I managed to get up off the chair I do not know. She took my blood pressure and found it was over 106bpm whilst sitting which might explain the constant breathlessness and feeling like my chest is going to cave in on itself.

That entire trip took around twenty minutes but felt like forever.

I am now back in bed, musing over my experience and realising how bad it is, that I am one of the lucky ones. I can go outside and feel the sun and fresh air on my face. I can go to the toilet unaided as hard as it may be. Others cannot and it is those whose pain I feel the most.

The next time someone asks “are you well” or “how are you” my answer will always be the same. Because there are no good days. And again, I reiterate, I am not unhappy or depressed and am not saying that in a negative way. I genuinely do not remember what it is like to feel well and I have adjusted my whole life to enable myself to make the most of things. Like the sun on my face or the wind in my hair.

So next time someone asks me to go down the pub or to a party – I ask them to respectfully remember that I cannot but it doesn’t mean I do not appreciate life.




1 Comment (+add yours?)

  1. Jane Clout
    Sep 02, 2011 @ 12:32:06

    It’s something other folk can’t understand, unless they’ve been there. I lie on the surgery waiting room floor, it makes the waiting time bearable, and they do tend to prioritise me (I think I embarrass them).

    How we would appreciate just a few hours without feeling ill.

    Bless you, and thanks for writing this. The internet connects us when we are stuck in our beds. By the way, you say your blood pressure was 106bpm, but I think you mean your heart rate? Or was that the lower of the two blood pressure readings… I can never remember if that’s the systolic or the diastolic. Anyway, enough from me. Be strong, and good luck xxx


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