Dear Loyal Reader,
I am back home, or at least, back in my home city. My actual home, the place where I spent most of my time before my accident, is still someway off. I hope to return there someday.
In the meantime, I will continue writing this blog, in the hope that it is useful to somebody. I kindly ask that if you have the means, it would be a great deal if you could support my writing by becoming a paid subscriber, and keep this show on the road.
Your loving writer, Hanif.
XXX
It was my first time travelling as a disabled person and I was keen to see what the experience would be like. The day had come; after six months, I was making progress, leaving at last, going back to London, my home city, for more treatment.
My heart sank. Outside the hospital in Italy, I saw they had sent what looked like a builder’s van to pick me up and drive me to the airport. It was rackety and old and looked a bit small. The driver put up a shaky ramp, got behind me, and tried to shove me inside the van. No one has ever described me as being tall, but it was clear I would not fit. My head would not go under the top of the van.
I wondered the previous day why Isabella had insisted on measuring me twice, unless it was for my coffin. My friends discussed removing my cushion to reduce my size, but there was no way they could remove it while I was sitting on it. And there was no way that I could fit into the van without serious damage to the vehicle or to my head.
At last another van arrived and we got to the airport. If you are disabled, they put you on the plane first, which is, as you can imagine, a hell in itself. We were delayed for nearly two hours before take-off and then another hour when we arrived in London. My condition meant I was also last off. Â Â
I had to wait for the entire plane to disembark, and as I was sitting at the front on an aisle seat, many of the passengers shoved me as they passed, looking down at me pityingly. Then, because of the steps down off the plane, I was disembarked on the other side of the aircraft on a sort of motorised twizzle-stick.
Four hours later we were in a taxi going over Hammersmith flyover. I could practically see my house from where we were. It was heart breaking; I just wanted to go home and not to another hospital. But I had no choice. I should have wept.
We were in A&E late into the evening, and there was the usual despair and abuse. I am now in a side room of this hospital. It is a relatively new building but now looks rather dated, a bit like a 1990s shopping centre. The nurses are cheerful and as sweet as they were in Italy. But in Italy everyone was white. Here, the only white faces I see are those of Isabella and my friends. The accents are multifarious. Several of the doctors and nurses are Indians, who have recently come to the UK after Brexit to help prop-up the NHS. There are also Africans, Afro-Caribbean, Thais, Filipinos, Irish, Poles and so on. Â The only person here who speaks standard, middle class English, is me. A tone of voice I taught myself in my early twenties, having grown up half-cockney in the South London suburbs, which was full of East Enders who left their neighbourhoods after being bombed in the blitz.
The side room I am in is off a dementia ward. I am being isolated here for a common, hospital infectious disease. Friends can come and visit but I’ve been told I cannot leave the ward or even my room because I am a danger to other patients. The dementia patients are noisy at night and tend to cry out in distress, and several of them try to abscond the ward and have to be restrained.
My spirits are very low. I haven’t been as depressed as this for a long time. My health is not improving, I am getting worse. Since I haven’t received any physiotherapy my hands feel more rigid than before and my legs feel immovable.
There is a rotation of friends who visit throughout the day and some of the early evening. They keep me occupied with gossip. I’m afraid of being alone and I’m afraid of wearing out the good will of others.
I’ve been told I can leave the hospital for walks if I wear a mask. So, we go out into the street, Isabella pushing me in a shaky wheelchair with no barriers for my feet and in which I’m constantly falling forward. Isabella is terrified that she will tip me into the traffic.
She’s even more terrified when she hears that I am planning on making a breakout tomorrow. After breakfast, I will be hoisted into this chair and will leave the ward, getting a taxi and heading home, back to the place I left six months ago for the Christmas holidays. Isabella looks justifiably nervous at this mad scheme, but I have got it in my head and will not let it go.
After a terrible night of total insomnia, paranoia and anxiety I decided to abandon the plan to go back to my house. It is too distressing for both of us. I call out to my friends, and they gather around, listening to my horrendous tale of sleeplessness and fear. I also have cold sweats; I’ve eaten almost nothing since I arrived here. I feel nauseous most of the time. I can’t get over this loss of my former life. I need my friends more than ever. I’m afraid they will desert me, which in reality I doubt they will.
Hey-Ho more to come.
Your loving writer,
Hanif x
Hanif, Perhaps a new house, single story, big open room, views, outside of London but within train service etc for visiting friends. Get your pals to find you such a place. New beginnings ease despair. After I was hit by lightning (A Match to the Heart) and medicac'd from my Wyoming ranch which I would never see again, I started fresh with $ help. It engaged me, though I could barely walk, talk or think for years. It helped immensely and provided a new kind of stimulus though I would always be homesick for what was gone. You have room in your heart for new homes. Xoxo gretel ehrlich
I am so sorry it's so horrific right now. I do understand! I was paralyzed from the shoulders down in 1992, although I recovered. After 6 weeks in hospital and rehab, I went home. I actually could walk (barely, and much to everyone's shock) at that point, but my arms were almost completely useless ('Central Cord Syndrome'), and I was still in horrible pain (at least for me, back then, spinal cord pain was constant, relentless, and completely untreatable). I hope your homecoming goes easier than mine. I was so looking forward to home, but when I got there, I realized that the familiar surroundings only underscored how much I'd changed. It almost felt like my past life was mocking or torturing me. You're already there - mourning the loss, but it may get worse when you finally do get home. So, please get all the emotional support you can (and you have much more than I did, and I am thankful you do), because after a week or two, the homecoming experience can become oddly, surreally, inverted - the 'place of comfort - HOME' can become this bitter place that underscores and delineates one's lost life at every turn. I am hoping your transition doesn't take that turn, but best to be aware, if you are first overjoyed to be home, and then find any kind of oppressive shift in mood happening, which is what happened to me: a kind of creeping ennui that became a crushing depression. Had I been forewarned (and, had anyone in my family realized that I was suffering major cPTSD over the physical damage, the pain, the loss of my previous life, and the actual damage to several parts of my brain), I might have been able to head it off at the pass. Instead, I came quite literally within inches of killing myself. Only the thought of my two young kids finding my body stopped me. How wonderful to look back and see that almost all of the peak moments in my life have happened SINCE my accident (the two peak moments from before were being present at my children's births). I feel, I hope, I pray, that this is true for you too: that many magical peak moments await you on your journey.