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My dispatches will always be free and open to everyone. I am unable to use my hands and I am writing, via dictation, with the help of my family.
Please, if you have any QUESTIONS for me, post them in the comment box.
Mornings are the worst, if it could be said that there is indeed a worst in all this. The whole thing is terrible, though there are some pleasures, mostly to do with other people. But it is in the morning, when I wake up and begin to become conscious of myself, a bit like Gregor Samsa at the beginning of Kafka’s The Metamorphosis, that I realise that what happened to me is real.
Waking up, my body, after a night spent in one position, begins to shift. My first movement may well be a shudder, during which my whole body, briefly, goes into spasm, as if I have received an electric shock. I realise that my hands and feet are not really my own, that they seem to be injured, unfamiliar objects. I can’t move them as I expect to; it is like, what we call in common parlance, your body going to sleep.
A year ago, when I used to wake up, I’d gather up my legs, stick them out the side of the bed, stand up, and walk out of the bedroom and into the bathroom for my morning pee. During this pee, I would enjoy looking out of the window at my garden, and the gardens and houses across the way. Somehow, I still expect to be doing that, and I cannot come to terms with the fact that I will never do such an everyday thing again. It is a realisation that I cannot bear or take in. So, for me, waking up is like re-entering a horror movie that I had thought, for a moment, I could turn off.
I can do nothing for myself. I am entirely dependent on other people, and am waited on for everything I want. You might say this is a wonderful luxury, but I would like to be able, from time to time, to make myself a cup of tea. Everyone around me, family and friends, are always delighted to help me. But what I have learnt is that now I cannot be afraid to ask others for things, for them to make me a cup of tea, or for them to scratch the inside of my ear. I was more inhibited before; I wasn’t the asking kind, I wanted to believe that others might intuit my wishes. But if I ever thought that making a demand or asking for something might be a nuisance, I will never now be able to worry about this, since I cannot do anything for myself, when all I have left is speech.
I do often wonder whether others are tired of my demands, or whether I am treating them as though they were my servants. The other day my son Sachin, who often becomes annoyed with me, finding my condition particularly painful and arduous, said, “You are always asking for things, dad, and you never say please or thank you!” He was furious, as he so often is.
I was devastated because since I cannot use my arms or legs, all I can do is make demands, speech is my lifeline. I make sure these days that I ask for things in the nicest possible way, I have to seduce rather than attack. But I must confess that I do sometimes omit to say please or thank you, it is true, since otherwise I would be saying please and thank you all fucking day long.
There is no way round this: all my conversations with friends, family, nurses and doctors are transactional – what do I want them to do for me, what am I asking for this time. These demands do bring out the best in others; they pity me, they love me, they identify with me – after all, they could be me one day, then how would they feel, how would they behave?
What would it be like to be like me, they must wonder; a turtle, upturned on its back, waving its little arms and legs around helplessly, begging to be turned over. So, I have become a dictator, and a reluctant one at that. I am entirely dependent on the love and generosity of others, and I can only wonder, as I lie here vulnerably, whether I am pushing them too far. But I have no choice now. I have to ask for things, but I do not do it out of a sense of omnipotence, but out of weakness. If I am in a rage, as I often am, it is out of powerlessness.
The other day, I was with one of my sons; he left, and there was an interval of about ninety minutes before another family member joined me. During those ninety minutes, when there was nothing good on the radio to listen to, I was alone here in the hospital, in my wheelchair, and I couldn’t even move. I could call for a nurse, but I didn’t want a nurse nor any abstract connection. I wanted - and I believed I could for a moment - to put my feet out of the bed, walk out of here, get the bus and stroll home. In a part of myself, I still believe that that is possible, since for ninety-nine percent of my life, I have been able to do just about what anyone else can do.
It's not even a year since I became a turtle on its back, and I am not really used to is, which is why every morning, when I wake up, as I explained previously, it strikes me again that I cannot do normal things, and probably never will. It makes me feel gloomy and depressed, it is something I will never understand; it is part of me, and yet is beyond me.
Hanif
In writing about your condition and lived experience as it is now, you are making such a valuable contribution to increasing understanding and awareness of what it is to need to be cared for and how it is for loved ones to have to become a carer.
Such situations will likely touch most of us in some way, as we move through life.
The more insight and awareness there is, the less alone we all feel and the better we all cope. Thank you x
Your conversations with friends, family, nurses may be transactional, but your dispatches from the sickbed are not. They form a path of insight; they bring us closer to each other.