‘Have you looked under the sheets?’
‘Yeah. I can’t find it anywhere.’
‘Is this it?’
Then one Sunday, she turned up with a brand-new iPad.
I think she thought I needed cheering up, after hearing each morning about my difficult nights. The day she brought in the iPad, she sat in the bedside chair and burbled away cheerily about what she had been learning about brain injuries. She had been to an aneurysm awareness group meeting at Methodist Hospital, hosted by Doctor Ayad.
‘It was really interesting,’ she began. ‘There was this one fabulous gay guy from Ireland, and he was really funny. You wouldn’t know he’d had his first hypertensive bleed in the nineties. Then he had another one more recently when he was at some out-of-town wedding.’
It turned out that after this second incident, the doctors discovered that the Irishman had suffered what he called an ‘annerism’.
‘Do you know what an aneurysm is, Baby?’
‘It’s some sort of brain thing, right?’ I asked. ‘But no, not really.’
I was certainly interested, though. Somebody else’s woes made for a distracting diversion.
Beth told me that an aneurysm is a weak, bulging spot on the side of a blood vessel, like a thin balloon, or a weak spot on a tyre’s inner tube. Apparently, around one in fifty people in the United States have one or more unruptured brain aneurysms. Including the Irishman. One of his doctors wanted to do a clipping surgery, but Doctor Ayad thought he was a candidate for coiling, instead. Coiling is a technique in which platinum wire mesh is inserted into the aneurysm, reducing or blocking the flow of blood into the little bubble. Clipping, on the other hand, describes sealing off the aneurysm with a titanium clip resembling a tiny clothes peg. The position of the aneurysm was such that Doctor Ayad was right. Now, the Irishman was recovering from his coiling, and fighting depression. He was still funny with it, though.
‘He figured out he was depressed when he saw a Calvin Klein coat marked down in Macy’s,’ Beth told me. ‘He said he even had a coupon to go with the mark-down, but he still couldn’t get excited about it!’
In my cloudy state, I thought that it was just interesting and sweet that my girlfriend would be taking such an interest in neurological conditions related to brain haemorrhages. It was only months later that I realised that she had told me about this in such an entertaining manner – and had presented me with a colourful brochure from the Brain Aneurysm Foundation that explained about inner tubes and coiling and clipping – because I had been diagnosed with two aneurysms in the work-ups following my stroke.
After Beth had gone home to do the latest batch of laundry and have a glass of wine, and I had leafed through the pamphlet to pass some time, I turned my attention to the iPad, thoughtfully protected by a case in my favourite colour, red. On the back, it bore our adopted motto, an irreverent representation of the Golden Rule:
Don’t be a dick.
Together, we had selected a wallpaper for the home screen. I had decided I wanted something comical and stroke-related, and we found a cartoon of an old woman helping her frustrated husband from his wheelchair to his walking frame.
‘Anything you can do, I can do better,’ the old woman was saying. ‘I can do anything better than you.
‘Do you wanna know why? ‘Cause you’ve had a stroke, that’s why!’
We thought it was hilarious.
I began to spend large amounts of time researching various aspects of my stroke and tweeting about the latest developments at HJD. When my friends responded, it cemented my presence in the outside world, as opposed to this pocket universe. If my friends could read my tweet about some whimsical thing I had learned about strokes, I must have some presence in the outside world, the real world. If I had some presence in the outside world, then I would have asserted my continuing existence. My reboot would be continuing, and I would be freed from my personal limbo.
Meanwhile, I was frequently tickled by what I would discover about my condition. In the early days after The Event – when I was still raging and insisting that when this was over, it would be time for someone else to suffer – I described myself as being ‘apoplectic’. For whatever reason (too much time on my hands, probably), I realised that I wasn’t quite sure why I should choose to use this word rather than just ‘mad’ or ‘angry’ or ‘raging’. So I looked it up online, and was pleased to find that, as well as having the lay meaning of ‘greatly excited or angered’, apoplectic also means ‘of, relating to, or causing stroke’, or ‘affected with, inclined to, or showing symptoms of stroke’.
It seemed that my mind had effected its own rehab programme. Despite the fact that I had suffered what I had incorrectly assumed was an old man’s affliction, my mind was going to work out like a younger man’s mind. Twitter. Wikipedia. Facebook. It wasn’t time for me to lie in front of the TV with the volume blaring, waiting for the sweet release of death.
The Wee Man, however, had other ideas. So on Sunday, 4th November, the TV was blaring. Notwithstanding his ill temper and superstition, Alfonso was a Church Man who was in no shape to make it to church, so he had to have the manna of spiritual sustenance delivered by the means of television. Loud television. Television so loud that it might as well have been the voice of god – and not the still, small voice recognised by Elijah, but the voice of Metatron ringing from the heights. A voice heard in the thunder and in the roar of the sea.
My perseveration kicked in. Not the overt kind, where my brain injury would cause me to repeat a gesture or a phrase over and over and over and over again. No. The kind where my stroke-addled mind fixed onto a thought, and I couldn’t shake it. I found myself unable to shake off the words of the televangelist as they sank into my ears and locked themselves into my brain. Sinful. Fallen. Gifted. Self-obsessed. Terribly uncomfortable.
While my father never expressed any interest in god or religion, my mother had been an elder in the Church of Scotland, the church of John Knox, hellfire and damnation. It was the hard, wooden pews of the Church of Scotland on which I was, to some extent, brought up, thinking of those crushes that I had told Beth about on the bench at the back of Harry Boland’s.
So maybe I should have felt at home as the televangelist prattled on. But Scottish Protestantism was a hell of a lot more buttoned up than its American cousin. Maybe it was something in this difference that meant I couldn’t tear my mind away. It didn’t matter that the televangelist was insufferable. Nor that it sounded like his sermon was aimed at folks who already thought they were better than everyone else, especially their relatives. According to the contemporary St Paul who yelled at me through the medium of television, evangelicals’ relatives were awful, with their doubt and their distrust and their disbelief, their sin and their suspicion and their scepticism. I soon learned that, even beyond that, the main problem with evangelicals’ relatives was that they didn’t give the evangelicals the respect they deserved. Though in my experience, people who worried about that tended to get exactly the respect they deserved.
Fortunately, the programming finally moved on. The locking jaws of perseveration weren’t ready to let me go, however. St Paul’s broadcast to the Apoplectics was followed by Zumba’s Biggest Losers, an infomercial about, well, Zumba. Zumba, I learned, is a Colombian dance fitness programme. So not only were my ears being offended by a Sunday morning infomercial, they were being antagonised by an infomercial about the benefits of doing carefully choreographed steps incorporating hip-hop, soca, samba, salsa, merengue, mambo, martial arts, and some Bollywood and belly dance moves. Just to rub it in, squats and lunges were also included. Here I was, not even able to wheel myself over to the TV to carefully choreograph some martial arts through the bloody screen.
On the bright side, it soon became clear that if I could mend myself enough to dedicate my life to Christ and Zumba, I’d soon be in great shape. Literally, as well as metaphorically.
The claims came thick and fast.
• Zumb
a blends entertainment and culture into an exhilarating dance-fitness sensation!
• Zumba classes are fitness-parties blending upbeat world rhythms with easy-to-follow choreography for a total-body workout – that feels like a celebration.
• With Zumba, I lost 20lb!
• I’m happier, and was energised to get a new and better job!
• My love life is better!
• By following that Zumba fitness programme, I can even take over a string of Balkan and Caribbean states.
Wait. What? Surely I didn’t hear that right?
As someone on the TV was pounding away, out of my eyeshot, but sure as hell not out of earshot, the announcer informed me that our Zumba participant was feeling it in her buttocks area. Or buttocks, as a human might say. Not only was she feeling it in her buttocks, she was smiling and sweating from start to finish . . . Now, even I was intrigued as to what exactly Zumba might have to offer. Even if having this follow the educationally challenged version of Thought for the Day seemed like strange affinity marketing, at best. But soon enough, the announcer was dousing my excitement by excitedly yelling that we were ‘About to meet Zumba’s biggest losers!’
I rolled over in bed and tried yet again to take a nap.
9
Speech Therapy
When Tenko left me each morning, spent and abused, yet feeling tenderly cared for, the day would be ready to unfold. Our beds faced wall-mounted white boards. For the benefit of the patient and the staff, the dry erase scribblings on them were updated each day to reflect the occupant of the berth opposite, the day and date, the duty nurses and the scheduled rehabilitation activities. An early sign of progress in recovery is checking the details on the board before the doctors visit on their morning rounds.
‘What year is it?’
‘2012.’
‘The month?’
‘November.’
‘What’s the date?’
‘Is it the seventh?’
‘Yes, it’s the seventh. And what day is it?’
I put on my concentrating face. ‘Err . . . Wednesday?’
‘Very good!’
In truth, remembering the day and date was still nigh on impossible. Cribbing off the board wasn’t cheating, though. The story of the next year would be one of carefully executed coping strategies. In any event, I had to remember to look at the board, and commit all this stuff to memory for a good couple of minutes. This was good practice.
The first activity listed on the board each weekday was ‘Speech Therapy’.
‘I’m confused by this,’ I told Beth. ‘Have I been having any problems speaking?’
It turned out that a quarter, to as many as four in ten, survivors are affected by aphasia in the aftermath of their stroke. In America alone, that was one million people. The term ‘aphasia’ derives from the ancient Greek, aphatos, or ‘speechlessness’, though to consider it speechlessness is not quite right. Aphasia covers a whole range of language difficulties that range from losing the ability to speak, read or write, to simply having difficulty remembering words.
Our Thing was based on constant, almost pathological communication, stemming from those nights chatting on that balcony on 15th Street in the glow of another eight million people shouting, talking, whispering and murmuring like refugees from a million Martin Scorsese and Woody Allen movies. When a thought occurred to me, the first thing I would do was share it with Beth. Because it was interesting or nice, or because she could help me fashion that fragment into something useful. Or because I could share the experience of being human with someone who cared.
The problem for many people who experience aphasia is that, while their intelligence is unaffected and they can construct complicated thoughts, expression of those thoughts is difficult. Much later, Beth and I sat round a table in an Indian restaurant having a funny, interesting, emotionally and intellectually complex evening at a table populated by people coping with aphasia. During dinner, our friend Avi wanted to chip in regarding another diner’s upcoming trip to Belgium. As well as being a stroke survivor, Avi worked to raise awareness of issues relating to stroke and aphasia, and ran an organisation that put together activities for disabled people in the New York area, from snowboarding to scuba diving, from rafting to rock climbing. A former emergency medical technician, he smiled easily and took pleasure from his dealings with other people. He was tracing the shape of one of those things with his finger on the cheap, white, disposable tablecloth.
You know the thing.
You know. Kind of like a grid.
You’d know it if I could show you the colour.
You eat it.
Sometimes it’s made with that one thing, and sometimes it’s that other stuff.
I’d tell you now, but the chatter at the other tables is distracting.
Just watch his finger. Ignore the fresh reds and greens of the kachumbar, the mango chutney, the lime pickle. Disregard the cool white of the raita.
Four horizontal lines. Then four intersecting vertical lines. Oh, what is it? It looks like that other thing . . . a grating.
I’m trying hard to grasp it, but I’m looking at the solid thought, then it turns to amorphous mush when it reaches my . . .
What’s that you say? Yes, that’s it! A waffle!
Afterwards, I asked Avi’s friend Yvonne, who was sitting across the table from me, why it should be that the people I met who had been affected by aphasia seemed to be so nice, thoughtful, curious about their condition, and active in the stroke community.
She told me she was glad I had met so many nice, thoughtful people who dealt with aphasia. ‘Remember though, that you don’t hear about the many people who just stay home, depressed and despairing and angry because of their strokes.’
I noted the careful formality of her sentences.
‘I would imagine that they don’t, or won’t, or can’t, participate in life due to their strokes, especially with severe aphasia. They can’t really speak for themselves! It must be hard on them.’
In contrast to my continence issues, when I asked Beth about my speech, she was able to reassure me.
‘Hell, no!’ she said. ‘I think the nurses would appreciate it if you shut up from time to time!’ She grins.
Maybe things were getting better. I may have seemed a bit batty from time to time, but since I first regained consciousness, I had been able to express whatever crazy thing had been passing through my mind without any difficulty. This was a relief. Sadly, if the symptoms of aphasia last longer than two or three months after a stroke, a complete recovery is unlikely, although with therapy, hard work and support, incremental gains are possible over a period of years, and even decades.
I got speech therapy regardless. It turned out that, notwithstanding its focus on working towards clear, organised thinking and successful expression, ‘speech therapy’ was a misnomer. Speech therapy covered not only speech, but also memory work, reasoning, organisation and even swallowing.
At the appointed hour, the first in what would be a string of tiny brunette speech therapists cheerily approached my bed and introduced herself as Ali.
‘You know, like the boxer.’ She popped stingy little jabs at imaginary butterflies floating around the bed.
She was about as much like Muhammad Ali as I was like Aly Tadros, but she knew her stuff. For a stroke patient, remembering things is about making connections that stick in the mind. A ridiculous connection can be even more effective than an apposite one.
In our early sessions, Ali would show me flashcards and ask me to identify what I was looking at. Sometimes it was clearly lettered, sans serif words. Other times, it was simple pictures of objects rendered in thick, black, cheery lines. Later, she would ask me to memorise three things.
A clock.
A truck.
A bunch of flowers.
Then, before I had to recount the items, Ali would turn over a page in the workbook that she had brought to my bedside, and read me a passage about the s
econd president of the United States.
Not so attentive in his studies, John Adam’s favourite subject in school was mathematics. His father dearly wanted John to graduate from Harvard and become a minister. With continuous encouragement from his father and under tutelage of Joseph Marsh, John’s schoolwork improved and he entered Harvard in 1751. He graduated in 1755 with Bachelor of Arts degree. Though Adams wanted to practice law after graduation, his first job was as a schoolmaster in Worcester, Massachusetts.
She closed the workbook. ‘Now. Can you remember the three things, Ricky?’
‘A clock. A truck. A bunch of flowers.’
I smiled. I was loving this. For whatever reason – the precise location of the lesions on my brain, the seriousness with which I was focusing on my rehab so I could get home to my partner, pure dumb luck – these tests went well. I usually finished speech therapy encouraged and energised. A competitive child of the late twentieth century, I’d had the chance to take a bunch of tests during a session and I’d passed them. Ali was an effervescent cheerleader. I was feeling good about myself.
Eventually, Ali got a new job, moved back home to the West Coast, and was replaced by another tiny brunette who didn’t have a ridiculous connection to a heavyweight boxer. George Foreman, I think her name was. By this time, our activities had progressed to logic tests. I was presented with a bunch of facts, and using a grid, some connections and a process of elimination, I had to establish, for example, that George lived in the house with the green door at 3 Sandy Lane because Sophie’s house had a number one lower than Jake’s. That sort of thing.
Stroke Page 8
