Dear Readers,
I began this blog in January, less than a month after my fall. For seven months I’ve been rambling about my condition, hoping to reach you somehow, to tell you what is like to live without the use of your arms or legs. It is no fun, to say the least.
As always, if you have the means, it would mean a great deal if you could become a paid subscriber, and keep this show on the road.
Your loving writer, Hanif.
Sachin takes me out of the hospital and into the filthy street, clogged with traffic. Outside, in my wheelchair, I feel frail and vulnerable. People are literally looking down on me. I cannot believe that they don’t know what is it like to wake up and find that you cannot use your hands; what that is like, what an ending that is.
I’m pushed into the barber shop where a friendly Syrian gives me a shave and a haircut. Im shocked by my appearance, I look thin if not emaciated. My eyes and nose are bigger than before. But I have been successfully shitting after taking a barrage of laxatives and my appetite has returned. I had a halloumi sandwich for lunch, which is more than I’ve eaten since I’ve come back from Italy. I feel warmer. Things are looking up.
Isabella, as I told you last time, said I should not only talk about my miseries. She was getting too many concerned texts from people. But there was not much else to say. I’ve now been in this new hospital, on the neurological ward, for a week and even I have to admit that it is certainly an improvement on the last place. It’s quieter. There are no half-naked demented people crawling along the floor, dragging their piss bags, howling and trying to escape the ward. It is much more relaxed, though I’m not sleeping better. I am tired for most of the day, but outrageously, I start to wake up around eleven O’clock, while listening to Martin Amis’s superb Money as an audiobook. I’m awake until about one, and then I fall asleep, afraid of my dreams. If it’s bad enough living in a hospital, I don’t want to have nightmares on top of everything else.
My friends visit me most days, some of them come early, others come late, and some just walk in at random times. Sometimes there are four people in this little room at once, people who in other circumstances wouldn’t meet. Carlo says my life is not so banal, since he considers my friends to be interesting; writers, intellectuals, artists, journalists, directors, TV people, and so on. The liberal elite are in an out, crossing over with one another in this squalid little room, leaning against the wall, trying to find a chair, sitting on the edge of the bed, eating chocolate, and talking either about Barbie or Oppenheimer (Barbie easily being preferred to Oppenheimer). The rest of the conversations are about books read recently, holidays and the failure of the Tory government - how bleak and uninteresting everyone finds Keir Starmer. Apparently I’ve got quite a party going on here, but since I refuse to be cheered up, I can only vaguely enjoy it.
I prefer it if Carlo is here when other people come, since he can do the heavy lifting in the conversation. He has plenty to say; he likes to talk. Until today, when I started to eat again, I’ve been too weak to say much. It costs me a lot to speak. But I can feel some of my strength returning now. I don’t know if that is better or worse. What I want to do is start going home since I live only fifteen minutes from the hospital. I haven’t seen my house since the Christmas holidays. I could do a sort of day release.
Holidays are the topic I hate most, since people say things like; ‘I’m away now, off to Tuscany for two weeks, but I’ll be in to see you as soon as I get back’. Think how many nights that is I will have to get through. They assume I’ll still be sitting in this drab, bleak little room in my nappie, and they will be right. Im going nowhere. No wonder I feel like shit.
Late at night, around ten thirty, the nurses come in, turn the big lights on and give me my medication. They usually check to see if I’ve had a shit, and if I have, they clean me up and change me. Unlike you, I’m handled and turned and washed by complete strangers every night. It is no longer humiliating. I have no dignity left. What bothers me is being among strangers, the nurses know one another and often chat as they work on me. They are kind and professional. But they change around a lot and I cant get to know them.
It is strange to me, someone who has spent their life doing exactly what they want, to now be in this straight jacket, to have no agency or independence. To be helpless and powerless.
Hanif xx
Hi Hanif - Reading your last entry is like reading a gratitude list (I imagine you’ll hate that I reduced it to a gratitude list - ha - but here it goes anyway)
1. I’m finally in a place that understands this new body and can help me.
2. I have loads of friends who sustain me with their intellect, support and humor.
3. I can go outside and feel the sun on my face, get a shave and have a halloumi sandwich.
4. My family remains steadfast, honest and loving.
5. My caregivers finally know what they are doing and are kind.
6. My mind is sharp as is my pen and I have a way to share my experience and let others respond to me.
Truthfully disability is the shits. It is fucking hard, it will be with you for the rest of your life. People feel sorry for us because they probably are genuinely sorry we have whatever disability they are staring at. Wheelchairs, disfigurement and missing limbs are hard to hide. We just have to face it or ignore it or hide it or get angry about it. I have done all the above. But don’t let them suck out your joy in other areas. I’m not being unsympathetic. I get it. I hope you will begin to believe you can be happy again.
PS A home visit is a great idea. Hopefully a therapist could go with you so you can sort out all the roadblocks to going home permanently. Living in a hospital setting does take away your autonomy - I understand why you feel helpless . I hope you are getting challenging PT/OT/Rec therapy now that your strength and health is improving. Your infection and bowel/bladder problems were dangerous, life threatening and wiped you out. Things will be better now. Keep fighting. I’m in your corner - Carol
"Things are looking up" --- the most wonderful four words of yours that I have ever read.