I say, ‘remember with clarity’, but most of what happened during the period of my appendectomy had slid into Kōetsu’s silver river and been carried through the mists of the Ishikawa prefecture, beyond my view. But I do remember the video for U2’s ‘With or Without You’ on Top of the Pops on the Thursday evening following my surgery. It never ceases to transport me to a bed in an NHS ward at the far end from the door, perpendicular to a window looking over springtime Edinburgh, with a wall-mounted 1980s television nearby. Even now, why it should stick with me seems obvious. The video was striking, all stark black and white. What was the driving cause, though, was the very reason that the band’s manager was against releasing it as a single, and why Adam Clayton thought it sounded more church than radio – it was sonically unusual.
Five years later, when I was in my final year of high school, another group of orderlies were wheeling me around Edinburgh’s old Princess Margaret Rose Hospital with a herniated disc. The first thing I remember from that hospitalisation was my best friend of the time coming round with a bag of fresh cherries. I’d only had maraschino cherries before, and these mysterious, aubergine-coloured things were a revelation. The second thing I remember was a volume of the complete works of Oscar Wilde. I think I’d borrowed it from the library before being confined to bed, but it was in hospital that I plunged into it and devoured it alongside every juicy cherry in a couple of sittings before discarding them both by the side of the bed, sated.
By the time of my stroke, medical professionals had cottoned on to the beneficial impact of art on the convalescent. At Rusk, we had the benefit of a recreational therapist, Dawn. A birdlike, friendly and solicitous woman with short hair, Dawn would bring art and therapy dogs to Room 920 and watch us interact with them from the far end of our beds, near the door. Experienced in handling Alfonso, she was ready to lob a couple of sarcastic ripostes from a safe distance. A safe distance from the two stroke patients being a span even shorter than the very few yards to the door. One day, she brought a jazz guitarist to the wards. I don’t really remember much about him, other than his virtuosity. Dawn introduced the strokey odd couple to the guitarist, attempting to play up our credentials as a receptive audience.
‘This is Alfonso. He’s from Mali. He’s a church man. He sings in the choir.’
I didn’t remember making any such definitive identifying statements about myself, and wondered how Dawn would describe me in a couple of strokes. As of the end of September, I wasn’t a practicing lawyer. I hadn’t yet looked into the future to see whether I would be again.
‘And this is Ricky. He’s . . . a Scottish hipster.’
Jazzman wasn’t fazed, he just put the data into the jazzputer in his head. Either it had a really fast processor, or he just decided to play what he played for all the broken people. A bit of both, I think, because the choices worked, and for whatever reason, seemed appropriate. Something by Steely Dan, followed by ‘Georgia’, which I came to discover is the hospital musicians’ standard.
On another day, Dawn brought around a young singer-songwriter called Aly Tadros. Born in Laredo, Turkey, Aly was just twenty-five at the time, but had visited Turkey, Spain and Egypt, and had the open, agreeable manner of the young traveller. Her long, dark hair and musical style hinted at an exotic background. Hers wasn’t a name I recognised, but when she played a short set of covers and originals, I made a point of noting it. When she was done, I tweeted into the real world: ‘Wonderful performance by Aly Tadros in my room at HJD. I encourage you all to have a stroke, to see her in such intimate surroundings.’
Much later, I discovered that Aly had also volunteered with care communities in Austin, Texas, and regularly played at hospitals, retirement centres and assisted-living homes, including as part of the Musicians On Call programme.
Some of the musical talent I was exposed to was more home-grown. I was surprised one afternoon to see Beth come into the ward with our friends J and Gregg. Surprised, because I didn’t know them that well. I think my longest meeting with Gregg had been a brief introduction when Beth and I had gone to see a DJ set by Jake Shears of the Scissor Sisters at the Hayden Planetarium on the Upper West Side. J, I knew a little better, having met him on a number of occasions when I escorted Beth to events hosted by the business school. I’d even been to his flat once. It had been another bizarre mishmash of spaces that somehow formed a young New Yorker’s apartment. At this point, though, my most vivid memory of him was standing on the roof of a converted church, sharing a pack of Parliaments while we tried to help him with his relationship concerns. Beth had, after all, written an occasional column of relationship advice for the business school’s newspaper.
It was the sort of vaguely drunken meeting during which all the participants connect and have a sense that we could all be good, long-lasting friends, and try to silence the nagging voice suggesting ‘Maybe at a different time; we’re all terribly busy; my friend roster is pretty full’. Nevertheless, leaning against the brick of the tiny lean-to that emerged from the flat roof, looking out over the jumble of the Lower East Side, J’s unaffected sincerity and our genuine concern had been enough to form a connection. And now, here he was.
My surprise was only heightened when, beyond the hospital-issue sheets, in the fall light coming through the sealed window, Gregg – or Nappy Pipes, to give him his name on the decks – carefully removed an alto sax from its case, and the lads politely asked Alfonso if he would mind if they put on a show for their ailing acquaintance. As well as polite, this request was sufficiently bizarre that The Wee Man had no context in which to balk, and blithely acquiesced.
So it was that a hip, skinny, Jewish MBA student transformed into his alter ego, Mouthmatics. A studio-quality version of the introduction to ‘Billie Jean’ emerged from somewhere inside J. Twenty-nine seconds introducing an iconic bassline that Quincy Jones attempted to cut from the song before Michael Jackson objected because that was ‘the jelly – that’s what makes me want to dance’. Now I was getting to experience it live, in my sterile little cabin of ill health.
I couldn’t dance, as much as I wanted to. It was still an effort to get myself into the bedside chair. As the nurses gathered and bobbed in the doorway, though, I felt the rhythm move me, and the happiness igniting my broad smile saturated me. Beth and I had spoken recently of dancing, and I would recall the tiny, sweaty Scottish clubs of my youth, and the sort of whitewashed cube, stuffed with revellers, to which I had threatened to escort her for these past few years. For now, that was another daydream.
We spent a good amount of time daydreaming during my recovery. Groping along the walls of the dark tunnel of recovery, not knowing what monster is around the next bend, we had to reach for the light. Future day trips to St Kilda and flowers, as much as puncture wounds to the groin and angiograms. Beth wrote me a note in hospital one day, echoing an ambition I had expressed to a physical therapist – ‘I can’t wait to go running in the park with you.’
In fact, Beth would often scribble a message on a Post-it note to leave on my sturdy over-bed table. The table was a beast of a thing, with four long skinny feet extending from a single, sturdy, and oddly grotesque leg. The feet ran on four straining castors, so the table could move over and retreat from my bed throughout the duration of my stay. It was a breakfast table, work surface, lunch table, reading desk and dinner table. A billboard, too.
The first note Beth stuck to the table read: ‘This is only temporary.’ It was a thought expressed to her by a nurse while I was still in Methodist, and it became our mantra. An article of faith for the patient and the carer. Seeing it stuck to my hospital table each day helped me get through the day. Beth would come in before work and after work, and be reminded that her task was not – hopefully – Sisyphean. She was encouraged to pen more notes.
‘I hope you feel incredibly loved.’
‘Stay focused so you can come home soon.’
As the two-inch squares expanded along the edge of the table, people began to
take notice. After a few friends had commented on how much they liked the notes, visitors were invited to leave remarks.
‘Better than dead!’ wrote Sparky.
‘You now have a valid excuse for “forgetting” to wear pants!’ came from Beth’s other flatmate, Mat.
Our friend Paul’s wife Jen offered, ‘Your stroke weight-loss program was a raging success!’ Elizabeth wrote, ‘You are a cool Daddy! I you!’
Beth’s notes were already beginning to reflect advances. We had moved from the general and hopeful ‘This is only temporary’ through ‘There’s no crying in rehab!’ to the whimsical ‘Maybe you’ll be ambidextrous’ and ‘Don’t choke on anything today,’ reflecting weakness on my dominant left side and the resurrection of irreverence.
We hadn’t reached ‘Let’s go four to the floor with Francois K at Cielo,’ however. We weren’t going clubbing any time soon. The dancing would have to come to us. Much to our surprise, it did.
The corridors at HJD reflected the cost of real estate in Manhattan. Use was squeezed out of every available square foot. While the corridors were wide, the outer walls were arrayed with idle equipment. The inner edges of the corridors were lined with those long nurses’ workstations, and between the equipment and the workstations was where the tango took place.
Not between the classy girl and the cripple, of course. No, Dawn had brought two young students from the storied Juilliard School for the performing arts on the Upper West Side for our entertainment and edification. Patients who were interested and able lined whatever wall space was left, standing, leaning on walkers and sitting in wheelchairs, and after a brief demonstration, our performers related details of the origin and development of the dance, as well as expanding into explanations of the nature of modern dance and choreography. Their passion for the passionate dance, and dance in general, imbued the often dead-eyed denizens of the brain injury wards with enthusiasm. The diversion was completed with a full demonstration. The dancers displayed their expertise by tangoing up and down the four-foot width of available corridor. Somehow, they managed to move from the very close embrace necessitated by the styles that emerged in crowded Argentinian dance halls into flashes of open embrace that allowed the display of complicated footwork and flair.
As the embrace opened, the narrow corridor spread. Eventually, it expanded to encompass a whole world of possibilities.
We’ll do that one day, I thought.
6
The Shit Doesn’t Hit the Fan
Each day, one of my doctors would come round to check on my latest status. Occasionally it was Doctor Blum, the neurology professor who was the titular head of my case. She passed by with such impressive efficiency that my sub-goldfish brain hardly registered her role in my recovery, never mind her serious haircut.
On other days, it was Doctor Karp who dropped by. A specialist in internal medicine, his areas of expertise included post-op evaluation and preventative medicine. All high forehead, glasses and beard, he wasn’t one for small talk, and I found it hard to warm to him. As time passed, it emerged why he tended to be in a state of heightened frustration when we spoke: Doctor Karp had drawn the short straw of selecting and calibrating the medication required to keep my blood pressure at safe levels, and nothing seemed to be working.
Most often, I was interviewed by Doctor Im. A physiatrist, or rehabilitation physician, he had a mysterious battery of tests that he ran through on each visit. Each check-in began with a casual chat.
‘How are you doing?’ Doctor Im would ask.
‘Not too bad, I guess.’
‘Did you sleep well?’
‘It took me a while to drift off, but I suppose so.’
That sort of thing. Except, these chats weren’t so casual. As we talked, he was inspecting my face and looking for any asymmetry.
Then, Doctor Im would take my hand and flick the tip of my middle or ring finger. From time to time, he’d have a resident or two with him, and they would get the chance to have a go. I would always assume that it was simply some sort of test of the functioning of my extremities, and that if my middle finger snapped back, everything was in good shape. All of Doctor Im’s residents had studied hard, though, and when their boss asked them to check for Hoffmann’s, they would flick my fingers, but watch my thumb. My thumb would flex in, and everyone would agree that I was demonstrating Hoffmann’s reflex. Nobody seemed overly concerned about this, and I had jumped to my incorrect own conclusion, so I didn’t learn until well after I had checked out that Hoffmann’s reflex is indicative of problems in the area of the brain that conducts impulses from the brain to the spinal cord.
Doctor Im always asked me to smile, too. This one seemed pretty obvious. He was looking to see whether my smile was symmetrical, after the havoc that had been wrought in the right hemisphere of my brain.
It wasn’t. I didn’t realise that, and anyway, this was always one of my favourite parts of the day.
The doctor would lean over me and direct me to, ‘Smile. Like this.’ Then he would display the cutest smile you could imagine, like a four-year-old playing up to the camera.
Next he would say, ‘Puff out your cheeks. Like this.’
It was all I could do not to reach out and playfully pinch his adorable four-year-old’s cheeks. Finally, each examination ended the same way. It didn’t matter if it was Doctor Blum, Doctor Karp or Doctor Im; they would ask ‘Have you moved your bowels today?’
Then they would ask, ‘Are you having any continence issues?’
It became apparent that the staff of HJD were more obsessed with toilet habits than the cast of a 1970s British comedy. Each day, I would answer the continence question in the negative, with increasing frustration.
Eventually, I began to ask, ‘Why do they keep asking me that?’
The nurses and residents, and even the doctors asking the question, were very circumspect. ‘It’s just a question we ask everyone,’ they would say. Or, ‘They just want to know how you’re doing.’
It took the woman I trusted most, the woman who didn’t have to worry about how I would react, to explain. I asked my question, and the eyes that brought me back to life narrowed behind her spectacles. My jokes weren’t usually quite this deadpan and bleak, even now.
‘Are you serious?’
‘Yeah. I’ve got no I idea. I feel like they’re treating me like a toddler.’
‘Do you remember when I came in to pick up your piss-soaked clothes?’
I was lamentably aware that the feeling on my left-hand side was dead, other than to the dread discomfort arising from the pressure of any hard item. What I hadn’t noticed was the internal deadening. This was nothing metaphysical, you understand. I corporeally couldn’t feel parts of my insides. Though this internal tactile demise started at my left nostril, it burrowed into me and made me wonder why my heart, to the left of my centre axis, hadn’t been paralysed, too. The deadness screwed right down to above my pelvic floor, and the little elastic sac that sits there.
I wasn’t totally numbed to the feeling of wanting to urinate, but when I did notice it, it was usually at such an advanced stage that I had to desperately ask for the grey collection bottle that was kept by the side of the bed. The body of the receptacle was a flat rectangular box that could lie on the mattress during use, its receiving spout slanted upwards, with rounded corners and sharp seams where the moulding met on the side. If I wanted to take a shit, I asked for one of the stippled cardboard bowls in a darker shade of grey. The involved process of manoeuvring over the bowl, under the sheets, wasn’t the most empowering action, but at this point filling the bowl and keeping the sheets pristine was the kind of small victory I would have to take.
I tried not to feel too bad about the indignity of it all. Everyone has to expel their waste. This was where the staff’s interest in our procedures became useful. Not only because of the basic need for the patients to avoid soiling themselves, their clothes and their beds, but because, since there are so few things the recov
ering stroke patient can, or particularly wants, to do for themselves, using the bathroom is the first action that can be used as a learning tool.
One of the most important things I had to learn was to adjust to my new inabilities, like a reverse Spiderman. A simple task like making my way to the lavatory was fraught with peril. I couldn’t just hop out of bed and stroll over to the toilet, as Alfonso and I had learned. It turned out that this was a useful lesson, as one of the greatest dangers of relapse for a stroke patient is trying to do too much and taking a fall. From this point on I was more cognisant of my deficits and didn’t attempt to do too much on my own.
Room 920 had its own en suite toilet. A palatial thing, it could easily be a spare bedroom in Jenny’s or J’s apartment, or the apartment Beth and I shared. You could even swing a cat in it, or an unwieldy wheelchair. With grab bars lining the walls that led to a throne elevated high enough to facilitate transfer on and off, it was a pleasure to spend time there. But it might as well have been in one of the outer boroughs. It was all the way over by the door to the room. My bed was on the opposite side, and I was separated from the prospect of relief by tables, the trek along the aisle between the two beds, and a left towards the door, before embarking on the long haul to the Promised Land.
I was under strict instructions not to undertake this journey alone. My fall was the stuff of legend on the ninth floor, so each nurse would begin her shift with a warning to me that I was not to attempt to get out of bed alone, but was instead to press the call button on the bulky handset attached to my bed.
Stroke Page 6
