London to Stanmore

I have finally arrived – late – at Stanmore SCIC, the object of so many weeks’ waiting, so much yearning and clever daughterly system-working.

Because I’m late, my first experience of the SCIC is the bathroom. I look around the tatty, smelly, ill-designed space and feel bitterly disappointed.  The toilet bowl is spattered with old diarrhoea. The blotchy-brown linoleum floor is damp and split where it meets the corners, creating seeping bacterial cracks. A shower-commode chair, which appears to have been abandoned in the corner, rusts quietly under its smeared white paint. A couple of small black insects crawl out of the drain in the concave middle of the floor. Scraps of paper towel, one blotched with blood, stick to the grill.  I think of my clinically clean bathroom in Balgrist, and even of the one in the RLH. Perhaps it’s the anticipation, the waiting; all those hours of dreaming about this therapeutic nirvana that would make it all worthwhile – I am close to tears.

 

The Royal National Orthopaedic Hospital layout is the work of some kind of mad genius coupled with long, chaotic and impecunious organic growth. The SCIC is the best part; small, divided into 4 four-bed bays, sundry side-rooms and a day-room.  It has the feel of a strange club, or low-budget youth-hostel-like holiday accommodation. Each bay has a French door leading on to a garden. This means that, when the weather is good (which in my experience it always is, in Stanmore) we can wheel ourselves out in seconds and sit in the sunny fresh air. Elsewhere in the hospital, there is a crazy inclined corridor down to out-patients – so dangerous on a wheelchair that the Occupational Therapists use it as a sort of graduation test.  From it one can see a collection of Nissen-huts branching out, each connected to the insane slope by a walkway.  I am sure when it rains they have to put out buckets in these corridors.  Past the flaking paint of the window frames one can see high-tech machinery squeezed into cramped sheds, like the Tardis except without the incongruously spacious interior or any hope of instant escape.

 

I have never watched Big Brother, but from what I hear it’s a bit like life in the SCIC. People from all walks of life are thrown together and given tasks to do.  There are shared problems. Unlikely alliances arise. The authorities play mind games on you – or you imagine they do. Eventually, everyone will be evicted.

 

The most frequently shared problem in the day-room, often over a constipating plate of hospital stodge, is that of the bowels.  You able-bodied people have no idea, but the bowels and movements thereof can make or break your day. Get two or more paras (I’m hoping this abbreviation of paraplegic will gain traction) together and within minutes the topic of bowel movements will come up.  I remark on this to Wayne.  “Yeah” he agrees “and it’s a shit subject.”

When I meet him Wayne has little control of his hands and walks with difficulty. “It’s going to be tough to get back into the scaffolding game in this condition*” he says “but they’ve kept my place open at work.”  I’ll bet they have: he’s a grafter.  Wayne is determined to work again. “I always have, since I was 16. Always provided for myself and my family.” He has never received any payment from the welfare state, he tells me with some pride.

 

 

I quickly take to going to make my own breakfast in the day room – it seems like a good habit to have, to be independent, and the other occupants of Bay 2 are still evacuating their bowels (that subject again!  I tell you, it’s an obsession) manually in bed which makes the ward a noisome, slightly unpleasant place in the mornings.

 

 

Lincoln is a gentle singer and photographer with dreadlocks and a lovely smile.  He and I go on a day-trip to try quad-biking. It’s an organised event with Pete, the Reintegration Practitioner (really!) driving us to a location in Hertfordshire or somewhere. As soon as I am on the quad-bike, hoisted aboard quite painfully by Pete encircling my chest with his arms and heaving me up, I realise what a crackpot idea this is.  I have no muscle control at all below the waist and a quad-bike, like a horse and an ordinary motorbike, requires a certain amount of squeezing between the thighs for stability. I whizz around the cross country course following the ‘instructor’ – a dashing young Spanish man with no discernible muscular shortcomings or concern for the challenges they might pose. Through water-splashes, around hairpins, over hard-rutted dried mud we fly, and my legs flop out left and right like big ungainly direction indicators. I slide gradually backwards on the seat and have to stop to haul myself back into position, which must be annoying for Lincoln who is following. I’m enjoying myself but only staying in the saddle by force of arm-power, which is tiring and painful in the left shoulder.  I am not sorry when it’s over and wonder if being para is changing me into a risk-averse sissy.

On the journey home, seated by my side in his wheelchair, Lincoln tells me of his depression, how he misses his wife and four children, his music, how he despises catheterising to urinate, how unfair it all seems.  How he cries every day. I tell him to focus on what he can still do, not on what he can’t – but I know I am just repeating someone else’s advice and it rings hollow.

 

 

Physiotherapy and Occupational Therapy take place in a large hall with an exposed, angled roof made from corrugated materials, like a small aircraft hangar.  Actually the whole hospital could be a repurposed WW2 RAF base. Maybe it is.  The hangar is air-conditioned, which no doubt encourages full participation as temperatures outside daily exceed 30C.

 

Joe, my physiotherapist is a strapping and pleasant young man from Grimsby. He is also a rotator-cuff genius.  He asks me to raise my left arm as high as I can, pointing my thumb up (I think this might be to avoid any appearance of giving a Nazi salute) first in front, then to the side.  I get it just past horizontal. My smug right arm effortlessly goes vertical, and reaches all the way across behind my back, great for pulling trousers up; the left cannot be coaxed beyond the front of my hip, no use even for getting something out of a pocket.

On the basis that pain is the body’s alarm mechanism designed to avoid further damage, I have been keen not to reach or lift anything which engenders pain. In Joe’s hands I am discouraged from mentioning pain until it becomes unbearable, and then not really to mention it either.

He gets to work, digging his thumbs deep into my shoulder or angling my arm then heaving on it whilst pushing in the opposite direction on my pectoral as if attempting to tear the leg off an undercooked chicken. His eyes go worryingly blank, like a man transported.  At first I worry that he is taking some perverse pleasure in the pain he is inflicting.  For my own sanity I tell myself that in fact he is visualising the complex layering of muscle and tendon, the juxtaposition of soft and hard tissue that make up the wonderful machinery of the human shoulder. Whatever it is, it works – at the end of one session I can already raise the arm 10 degrees higher.  So rather like the understated little Sieg Heils of Hitler himself, not yet the full boneheaded Sturmtruppe gesture.  Never mind, my goose-stepping wouldn’t be much good anyway.

 

The last bed in my bay is occupied by Gus; he was a body-builder prior to his SCI.  He is a big Jamaican of few words, and many of those are in a patois I partly recognise from the young people in my life.  He speaks in a quiet, staccato way which always means I have to wheel close to him to converse. He goes to the gym daily but spends long periods in the bay, behind his closed curtain.   The nurses coax him from bed if he stays beyond noon. He seems to be giving up hope. Then he stops going to the gym. He has a late-night kebab habit and is putting on weight.  “I’ve got to get my … motivation back” he says to me, his eyes empty of ambition. Rather sanctimoniously I tell him there’s no time like the present. I mean for the gym, not more generally – but he sits, a big and powerful man in a wheelchair, and looks lost. He is from Tottenham where, two years ago, his brother was shot. Later they will attempt to discharge him, wheelchair-bound, to the same neighbourhood.

 

Victoria is tall and quite posh and Rochelle is a tiny, energetic Kiwi. Rochelle wears the green uniform of an OT (Occupational Therapist) and Victoria the white of a trainee. They are my OT team. We back-wheel balance down the long hill to the Aspire pool, mount and descend kerbs, practice wheeling on grass and uneven surfaces, and eventually – go down and up stairs on the wheelchair.  They position themselves behind the chair, ready to catch me if I topple backwards and I’m sure they help me up the kerbs; they deny it every time. OT wheelchair skills are largely a matter of practice.  I hope I dare continue after discharge, without mighty little Rochelle’s reassuring presence.

Victoria’s mum is Swiss and at first disapproves of all her boyfriends; I tell her to marry the one her mother likes least.  She said she was doing just that, in August, but that her mum had decided she liked the boy very much.

 

Azalea is wearing shocking pink lipstick which matches her trainers. She has glamorous hair which I’m not sure isn’t a wig, it starts so suddenly at the top of her forehead. Prior to SCI she was a rapper and is very quick and witty.  She tells me she earned £1,200 an hour rapping: happy days and a brilliant life.  She’s sad to have lost it all to a tumour on her spinal cord.  I ask why she can’t rap from her wheelchair.  She says her style was very energetic, with a lot of dancing.  I suggest that at £1,200 she can hire two dancers and still take home triple figures per hour. She could pimp her chair, I say, hoping this means what I think it does.  She cheers up.

We are playing Boccia –  a sort of boules – with Mustafa, Pippi, Lincoln, Del and Dawn. Mustafa is quadriplegic, has a motorised chair and cannot throw the soft balls.  He has to use a sort of slide to roll them down. When it’s Del’s turn to throw the jack he places it too distant for Mustafa to reach with his slide. Azalea says that this is unsporting but Del does not care. Azalea wins most of the games.  “It’s tough, being this great” she says. “It’s hard dealing with the perfection.”

I hear the game degenerates after I leave, into an over-competitive and ill-tempered shouty match, to the point that Dawn – who had laboriously arranged a tournament, including a knock-out schedule based on the world cup – takes the boccia set back, never to be brought out again.

 

Azalia and I are talking about our untrustworthy bowels (I told you, it’s obsessive).  She says “I just wish I felt nice again, down there.”  This seems to me to put it perfectly. I want to feel nice again, in a way I didn’t appreciate at all pre-SCI.

 

Joe sends me for a steroid injection in my shoulder.  I joke that it’s so he can hurt me more, without my complaining.  He does not correct me.

After the injection the aching pain that has stopped me from sleeping disappears.  I don’t know why it’s taken so long for this brilliant solution to be suggested. Physiotherapy is still painful, however.

Except in the pool.  Joe takes me to the Aspire pool and the feeling of weightlessness, for the first time in months neither sitting nor lying (even the standing frame involves a strap tight across my bony derrière) is blissful.

When I swim my feet drag along the bottom of the pool.  Worried as ever about skin integrity, Joe suggests a pair of croc shoes to float the feet.  When they finally arrive the crocs are too buoyant, bringing the feet so high that my head submerges.  I decide to risk the skin integrity, as the lesser evil between that and drowning.

 

Suddenly Lincoln is walking.  With crutches, but walking. Having only seen him in a wheelchair, I had no idea he had the capacity to do this.  I feel a bit jealous.  Later, in the physiotherapy hangar, I see Azalea struggling between the parallel bars; walking.  I wonder if I’m the only one whose legs are so inert.  Even quadriplegic Mustafa has occasional spasms in his legs; mine just sit there and quietly atrophy.

Actually those spasms look very inconvenient: sudden unpredictable paroxysms as if he were working the kick foot-pedal of an invisible drum. I tell myself to beware what I wish for.

There is a serious problem with communication in this place.  You tell a nurse something (like the bathroom is trying to kill me, with its loose shower-heads and floppy loo seat – not to mention the bacteria-garden) and the message goes precisely … nowhere.  Even the doctor’s instructions (e.g. – ‘take a urine sample’) are noted down and then ignored. Maybe it’s part of the brilliant rehab, some sort of ‘sink or swim’ policy.  Maybe not.

 

While I’m having a moan: were a empirically-minded alien, fascinated by the greatest achievements of humankind, to visit planet Earth to seek a defining characteristic of ‘our NHS’, one feature which they would find statistically indisputable is that employees are chosen for the poverty of their command of the English language. They (the alien) might wonder why this was the case, but, being a bloodless statistician, could not argue with the facts. They might ask themselves how this works in favour of the efficient running of such a national treasure. When we find them (still the alien) maybe we can ask them for the answer.

 

Dawn is a highly intelligent Irish woman endowed, as are so many of her compatriots, with the gift of the gab. She’s another one who can, it turns out, walk – although she was told by her doctor that she would never again do so. She and Azalea come in to the day room looking dazed and gloomy.  They’ve just had ‘the sex talk’, and it was not, it would seem, encouraging.  “They weren’t exactly queuing up before” says Dawn, glumly “now I’m f***ed”.  Before I can stop myself I hear my voice say “Isn’t that exactly what you are not?”. Luckily she sees the funny side.

Later Henry (a quietly humorous Essex ice-cream-man and a gentleman) and I share ‘the sex talk’ with the same nurse.  Henry is pessimistic.  “Who’s going to want us now?” he asks, gesturing at his wheelchair. “All I want is some company.  Someone to cuddle on the sofa.” The nurse starts to talk about pills and injections and horrendous-sounding physical aids.  I interrupt to assure Henry that he’s going to have no problem; with his humour and courtesy he’ll have no trouble finding someone to cuddle.

 

We are all sitting in what we call the ‘Secret Garden’, although there are no secrets here. On the table: several plastic cups from the dayroom and a couple of innocent cartons of pineapple juice. Out of sight on the ground: paper bags containing some sort of hooch – presumably vodka for its neutral taste – sourced by Del from a trusted outsider black-marketeer. We are celebrating Pippi’s imminent departure.  Pippi is an exotic beauty of Nigerian ancestry whose backstory claims are so outlandish and mutually exclusive that only half need be true to qualify her as the most interesting person I have ever met.  And I once met Jeff Beck, the ‘Mad Dog of Wall Street’.

Alcohol is forbidden on hospital premises.  But then (I prepare my fallacious argument) so is smoking, and the ground in the garden is littered with cigarette butts.

As we all get drunker and the light fades, someone starts a round of speechifying. Because we are drunk, these are variants of the theme ‘I love you guys, man!’  When it is my turn I quote Catullus, by far the best thing I learned at university:

Odi et amo. quare id faciam fortasse requiris. / nescio, sed fieri sentio et excrucior.”

(I hate and I love. Why do I do this, perhaps you ask. / I do not know, but I feel it and I am tortured). Azalea goes next and quotes an extensive passage in Latin.  I think it might be her school’s grace, but it does not matter. Kev, a young man with a ripped, terrifyingly tattooed torso (bulldogs and union jacks and lightning flashes etc.), who gets on surprisingly well with everyone regardless of education or race, says ‘you’re like family to me’ and immediately has to leave to catheterise. As he disappears into the gloom he calls out “Viva la Famiglia!” and with one voice we reply “Viva, viva”.  I hope it isn’t a mob reference.

 

Then I see the genius of Stanmore. The small bays, the shared gardens, the dayroom,– the patients with their shared privations and common problems, whatever their backgrounds, are bound to form a solid, highly beneficial self-help group. It’s brilliant.

Next day we all get a hectoring letter on NHS headed paper about hospital rules regarding alcohol, threatening early discharge for further transgressions.

Somewhere along the way we lost the genius.

* Most of my co-patients have an accent, mainly London / Estuary / East End, some Jamaican or from the Indian sub-continent. I shall forebear from trying to render people’s accents in phonetic writing, which can be very annoying.

Advertisements