My loyal readers, as The Kureishi Chronicles approaches the year mark, I’d just like to say how thrilled I am to have reached nearly nineteen-thousand-subscribers. Writing this blog, reading all of your wonderful comments, really does keep me going. Stay with me.
I would just like just to remind you of the benefits of becoming a paid subscriber.
Ask Me Anything: I so enjoy answering your questions and I plan to make this a mainstay of the blog. So, if you want to chat and start a discussion, consider subscribing and asking a question in the comments below.
Signed Books: This week, Founding Members have been sent their signed books (I’ve attached a photograph below). If you have the means, become a Founding Member and you too will receive a book.
3. More Essays and Competitions: More essays from my back catalogue will be coming your way. More filth, more jokes. And more seasonal writing competitions!
You would have thought that with the end of my hospital stay in sight – I am being discharged on December 20th – that I would be more cheerful. And I am in fact reasonably chirpy. In Rome, I discovered, that without being consulted, the rehab hospital was giving me anti-depressants. Back in London, in June, when I found out what I was being prescribed, I decided to continue taking them. I can’t say that they made much of a difference to me. I didn’t notice any effect, neither good nor bad. In discussion with the psychiatrists here, I decided to halve the dose, since it seemed pointless to continue with a drug that wasn’t working. The physiatrist agreed, telling me that because of the low dosage I was on, the only effect would be to help me sleep. It was a mercy. But as we approach the date when I am to leave, I have become more apprehensive.
I am concerned particularly for Isabella and the responsibilities that she will have to take on. She and my caseworker will have to arrange various forms of care, which, while I am here in hospital, is an around-the-clock-procedure. The advantage of being in hospital is that I am surrounded by nurses and medical amenities. It will not be the same at home. When I think about it, I realise that I am barely capable of doing anything for myself. I will need, with the participation of Isabella and my family, as well as with a carer, to be got up in the morning, washed, dressed, and hauled out of bed and into my chair. Then I will require someone to feed me, take me to the shops, prepare lunch for me, and run various errands regarding my work and job at the university, where I teach creative writing. The extent of my helplessness is becoming more clear to me when I think of the future.
I was discussing this with a fellow patient, a middle-aged man who, earlier this year, was in his garden when he turned and tripped over a rake, breaking his neck. Now he is confined to a wheelchair and can use only one hand. I am impressed by his outrage. He complains often about the shock of what has happened to him, as if it is a radical inconvenience. One day he was living his life, and what he calls a normal way, and the next he had to find someone to wipe his arse and help him out of bed. The violence of this break with his former life shows on his face. He will be leaving soon, but will require a carer to live in his house. He will need another carer when the first carer takes a break. He will have to request constant assistance from the district nurse and the council.
At present, my house is being rebuilt on the ground floor to prepare for my homecoming. I am having a bathroom created in my living room, and part of the wall in my hall is being deconstructed to create space for my wheelchair and possibly for a stairlift which I may or may not have installed in the future. For Isabella, who is living there, this work – the dust and noise – is a huge bother. She had never expected to be living in a house constructed for a disabled person, where all the equipment for incapacitated living is crammed together in a relatively small space.
Lying in bed in hospital, I am spared all of this, but I am hoping that the work will be done before I get back. My life and that of my family has taken a nasty turn. This is not a pleasurable semi-retirement. No one in the family can avoid being caught up in this tragedy. We have all had to adapt and overcome our resistance to change.
Meanwhile I move around the hospital on my electric wheelchair. I can drive from my room to the day room, where people eat and watch TV; or I can go out into the garden room and chat with the gardening volunteers. Then I take a turn around the garden itself, if it is not too cold or raining. I do a loop and return to my room and listen to the radio. It is a small world I exist in, but I am used to it now, and I am nervous of leaving it. This place I occupy is inhabited by disabled people and their carers. Being semi-immobilised here is not such a big deal. People do not talk down to you. I am more nervous about leaving this place and becoming a disabled person in an able-bodied world. I fear the eyes of others, or what they will think when they see me. I dread my fantasies about what healthy and exciting lives they lead in their fit bodies. I will never be like them again; I will have to learn how to inhabit who I have become. But I do not wish to, there is a struggle in me, I do not want to lose my former self.
I am doing some work for the BBC Radio Four programme ‘Today’, interviewing the gardener here, and a recorded discussion with my son Carlo about how we do this blog. I wanted to devote a part of the programme on the effects on a family after an injury like me. The intention was to get all of my family together and talk through what has happened to us in the past year, but my son Kier and Isabella do not want to participate. They find it difficult to talk about themselves in public. This is understandable, and Isabella wonders how candid speech comes so naturally to me. I considered this myself, since sometimes I find it easier to talk on radio, for instance, than I do to a friend. Maybe it is because, in a way, there is no one there; you cannot actually see the audience. My guess is that it is also to do with being a writer, which means that there is a bond of trust between an author and his or her audience: I take it for granted that the reader has a sympathetic ear; that they will receive my words kindly and with interest, just as I might listen to them. So I have come to believe that this is a free and uplifting exchange, rather than a breach of privacy. That is just me.
Hanif
Dear Hanif,
Pleased you are almost home!
I responded to your comments regularly at first because I admired your honesty as I do your writing, and was hopeful that, as a disabled person since 14 and a lifelong activist, I could help. But life does indeed throw us surprises.
In August this year unannounced and unexpected, I experienced a subarachnoid haemorrhage which comes with the most painful headache imaginable turning me into a howling beast. After six more bleeds in my brain, I was soon in intensive care with the threat of death over me, and loved ones gathered in the relatives' room. I remember very little, only strange things such as random hallucinations and the time I spoke gibberish. I don't thing I can share the link to my monthly Byline Times column but it is quicker to read there if you and your readers want to know more. It is also in the current printed edition.
Perhaps because of my life as a disabled person, I worried less about certain things and worried most of all about whether I could write again, no matter what the process - and these days I am on full voice dictation. Neurology testing showed that 100% of my language function remains intact! On that, I feel blessed.
I'm 63 and still face so many barriers because the disability experience is seen only as negative. But I believe this also relates to why you worry about who you now are and what you might become. There is very little that shows the extent of our lives, particularly through the transmutation of fiction. Despite the common view, we are not homogenised and while in hospital with my brain traumas, I fought daily against what we call pity porn, that we exist merely for others to feel sorry for our worthless and pathetic existence.
I won't have that.
Only you can find a framework and a comfortable identity for your new life. But please look around and seek out what we are behind the veil that has been imposed upon us. I feel you know already how your experience is firing passion into your writing. I hope it takes you further, and helps you seek out those you don't know, those that have been hidden who have such a lot of great wisdom. You do have a slight privilege of being known and successful upon which your new life can grow. This isn't to dismiss the trauma of your experience – I am going through one myself now with impaired memory, further loss of movement, intense pain and no clear prognosis. But I am still me, and I feel privileged to have enough experience in this life to know that I can prevail and fight on. Don't ever let the non-disabled bastards dictate to you or put you down.
Oh one of my favourite memories on my last day in ICU, was the hand-fed cheese and biscuits given to me by the writer Jake Arnott. It was humanity, it was hope, a purity of friendship. And the cheese was lovely….
Penny
This is one of those times when I think that a little candour and honesty is beneficial; where forewarnings are of more practical use than reassurances.
I lived with my grandmother during the final years of her life, when her arthritis made it impossible for her to remain fully independent. Her hands were like a pair of screwed-up brown paper bags. Her long bones were warped and crooked. Her elbows were oak-appled. Staring at them for too long triggered, within my nervous system, a live wire of discomfort. The mortar joins of her knees had crumbled to powder and been replaced. Those well-intended surgical interventions, that she underwent in her 50s, were a drop in the ocean, their efficacy diluted by the extent and the relentless progression of her illness. In her youth she had been an avid tennis player. Her hands knew their way around the strings of a violin. During her final years, it was a struggle for her to hold a teacup. Her left leg kept getting infected. It was so painful that even a light blanket resting on top of it caused her agony. I went out and purchased a variety different sheets until I found one that she could tolerate. Her consultant wanted to amputate below the knee. Despite the pain that it caused her, my grandmother couldn't bear to think of herself as a one-legged woman. The leg stayed on. Eventually it killed her.
The point came when she could no longer walk. While she was in hospital, I moved elements of her bedroom into the dining room downstairs, where the extended family used to converge on Boxing Day – a task that was made more complicated by the stair-lift that had been installed a year before. For the remainder of her life, my grandmother slept in this incongruous setting, surrounded by the wall cabinets of crystal glasses, the soda fountain, the wheeled bar that would open out to display half-drunk bottles of spirits, and my late grandfather's sailing trophies, and by new acquisitions on loan from the local health authority – the commode and the hoist. I regret not taking greater pains to elevate her new bedroom into something that was better suited to its new purpose. It always looked like a pair of photo transparencies of different rooms had been layered, one on top of the other.
She had carers who would show up during the day to wash and dress her. Sometimes they would arrive late to get her up, or ridiculously early to put her to bed. Somebody on a home-visiting schedule always has to be last, and someone always has to be first.
Some of the carers were conscientious human beings who worked for a pittance. Some were lazy and ignored the care plan. There were a couple of bastards. There was a problem with the mobile phone I had bought my grandmother for emergencies, on the off-chance that her panic button didn't work. When I opened it up to look at the battery I discovered that the SIM card had been removed. I know who took it. She was caught a few weeks later stealing from one of the other addresses she visited. I went to court to see her get sentenced. She was given two weeks inside. I still see her around town.
There is only so much that a carer can do in a time slot; the bare essentials. It fell to me to contend with everything else. It was a change of pace. My grandmother's horizons had shrunk, but mine had too. It didn't help that many of my friends had moved away. My social life dwindled. I didn't go out much.
The biggest adjustment was coming to terms with the fact that this wasn't a temporary situation that would improve. It was ongoing and something to be managed. Under such circumstances, it is very easy to slip into a mindset where the person you are caring for is reduced to a set of known responsibilities and unanticipated problems that need to be addressed. You can begin to resent them or, even worse, to lose sight of them as a human being.
I found it helpful to break down what needed to be done into smaller tasks. I did the same thing with any problems that arose – what is the issue, what is the ideal outcome, and how to we get there?
The most important thing that I did was to cultivate moments in the day where I engaged with my grandmother person to person, on a more or less even footing. There was a lot that she couldn't do, but she could still hold a conversation. So I drank tea with her, and ate dinner with her, and watched TV with her. She is the member of my family who I loved the most – not a saint by any means – but a person who was directly responsible for a lot of the good things in my life, and many of the good parts of who I am as a person. I never wanted to think of her as a burden.
Though she has been dead for a long time, I am still sometimes awoken by the sound of her calling out to me in alarm; the way that she would when she had caught herself in mid-fall, or had half-tumbled out of bed (before the side-rails were installed) or, on one occasion, when she had become helplessly entangled in her own sheets and couldn't free herself. She was so upset by the experience that afterwards, even though it was early morning, we sat next to each other on the mattress and ate Mars ice-creams. I thought something ridiculous like that might take her out of that bad moment. Anyway, I still sometimes hear her voice and rise to my feet, still not fully awake, but ready to go to her rescue, even though she doesn't need me any more, and it is just an echo of the past.
A couple of weeks from now, I will go to her grave in Southend cemetery, where it stands overshadowed by a row of conifers that screen-off the industrial estate behind. The ornaments from an adjacent headstone used to to encroach onto her patch. It used to annoy me. That memorial doesn't seem to be attended any more. I will clean both stones and help to attach a holly wreath to my grandmother's.
This Wednesday, I will make the long pilgrimage to the grave of her husband's parents – my great parents – in the terraced graveyard at St Peter's. Many years ago, the headstone came loose and slipped down the hill. It took the combined efforts of my grandfather, myself and my two brothers, hauling on a rope, that we had wrapped around a tree for leverage, to get it back up.
My human contact with these people is an artefact of the past. All I have left now are responsibilities that I carry out with love and gratitude.