Beth and I walked to the urgent care centre on Fifth Avenue. I’d never been to one of these places before, and it all seemed pretty great. You could get seen right away. The interior design was decent quality, in a non-committal, abstract, modern style. Outside, Park Slope Urgent Care Center happily presented a glass frontage to Brooklyn’s Fifth Avenue. The restrooms hadn’t been painted with blood, shit and snotters, like in the average ER. In a regular hospital, the emergency room was where people would go when they didn’t have or couldn’t afford medical insurance. Where they go when they can’t put the visit off any longer. The absence of screaming in the urgent care centre was also encouraging, as was the doctor, who had an excellent manner and was the first professional that night not to totally freak me out. She tweaked my meds in consultation with Doctor Im, got me some referrals for cardiologists, and by the time a car had taken us up back up the Slope again, I felt a lot calmer.
Then I realised that, in a classic stroke patient move, I had left my phone in the car. Even then, the nice lady who had replaced me in the back seat picked up my call, and 30 minutes later, the driver was back with my spare brain. The one that remembered the dates and times of my scheduled appointments and my correspondence and almost everything else I had to remember. After a disheartening interlude, we had managed our way through another tricky situation, and I felt encouraged.
Talk of depression had been commonplace in my journey as a stroke survivor, from the Irishman with the aneurysm to the woman with aphasia, to the repeated warnings to look out for it from my doctors around the time of my discharge from hospital. Post-stroke depression is a horribly common condition, and up to a half of stroke survivors suffer from it. I had read that its prevalence peaks six months after a stroke.
The position of the lesions on my brain seemed to subject me to greater risk of post-stroke depression, but my relative functionality was a positive. PSD is linked to a high level of stroke-related limitations and disabilities in functioning, especially in performing what my doctors called ‘activities of daily living’. These ranged from being able to wash and clean myself to being able to manage money and transport myself within the community. The basic ADLs were within my capabilities, particularly with the grab bars that were spaced around the bathroom. Nevertheless, I did seem to be at some risk at this stage. In addition to my lesions being on an area of the brain called the basal ganglia, after the leaps and bounds of the progress I had made in the early days of rehab, post-discharge advances were necessarily more incremental. In order to stay encouraged, it became important to, firstly, recognise smaller advances and not to take new achievements for granted, and secondly, not be discouraged by expected set-backs. One day, Beth sanctioned a solo trip for me to deposit a cheque. During my trip, I noted that I could independently take a multiple-step journey (including a subway ride) to a previously unvisited location, even if it was only a couple of stops to a familiar neighbourhood, and then transact my business upon my arrival, step up onto the curb without giving a second thought to the positioning of my left foot, and get up the subway stairs without absolutely clinging onto the bannister for dear life. These little things gave me a sense of achievement and encouragement for the day.
On another day, I might have ruefully reflected that, as Albert Camus had written of Sisyphus, my scorn of the gods, my hatred of death and my passion for life had won me nothing but ‘that unspeakable penalty in which the whole being was exerted toward accomplishing nothing’.
Soon after that day I deposited the cheque, I headed off to my first Young Stroke Survivors Support Group meeting at the Rusk Ambulatory Care Center in Midtown, which wasn’t far from my ugly, old, unsuited for purpose office building. Beth came, too, and kept me right on my instructions for getting there and back, so this was less of an independent activity. I still managed to misjudge how long it would take me to get to her office, leaving us late for the meeting, then lost my phone again during the course of the expedition. These events left me disconsolate, even though, in the recent scheme of things, they needn’t have been the end of the world. The problem was that I was now far enough along the road to recovery that part of me wanted to immediately make the jump to fully functional. Anything less was a disappointment. That was unreasonable of course, and in any event, it ignored the fact that the vast majority of us, even the able-boded, are dysfunctional to some degree. Thankfully, Beth was able to pull me out of my funk with that observation and other kind remarks.
‘Also, think about it.’ She smiled. ‘That’s exactly the sort of thing you would have screwed up before your stroke. It’ll turn up.’
The Young Stroke Survivors Support Group was also a great help in giving me a boost. I’d encourage any young stroke survivor to attend these kinds of meetings because I found out that there are two types of stroke survivor, and to turn Alexei Sayle’s remark about there being ‘two types of jazz and they’re both crap’ on its head, both of these sorts of people were great. There were the folks who were doing better than me, and they were inspirational, and there were those who weren’t quite so well off but doing their best, and they were pretty inspirational, too – if not more so. Maybe Camus was right, and the struggle itself towards the heights is enough to fill a man’s heart: that, as he pushes his huge rock up the steep hill knowing it will roll away before the task is complete, as it always must, one must imagine Sisyphus happy.
We kept working on making my incremental gains. The visiting therapists’ visits continued, and on the days they didn’t come, I did my exercises assiduously. Grasping onto the back of a chair, I would stand against the bathroom door and bend my knees and let my back slide down the door before pushing back up again. I would lie on the bed and imagine a thread running from the ceiling to my belly button, and pulling me up into a bridge. Beth would fill a large yoghurt tub with lentils and a paper clip and a couple of dimes and an eraser and a plastic token and a short screw and a little luggage key and a tiddlywink and a spring; I would root around in it with my numb left hand and try to find them. The little key was always the hardest.
It all paid off when the therapists from the visiting nurse service came to the conclusion that I was ready to begin outpatient therapy at the Ambulatory Care Centre. Actually, it was an intimidating thought. My application for the city’s paratransit service had been approved, but none of my medical advisers particularly advised using it. The disabled around the city were picked up in whatever order made most sense and were dropped off according to the same system. The amount of time it would take to get anywhere depended on where the service needed to make pick-ups and drop-offs between where the bus was, where you were and where you were going. Even if my executive function was good enough for me to be organised to get to the rehabilitation centre in time, I was still going to be spending endless time perseverating and waiting for minibuses in the apartment, at the centre, on the street. At this point in his recovery, this stroke survivor needed certainty in his life and not too much idle time on his hands. So before Beth returned to work full-time, we took some practice rides on the subway. It wasn’t too bad, and I learned some interesting stuff about my new limitations as we walked into the 15th Street-Prospect Park station.
‘You know what the worst thing is?’ I asked Beth.
‘Something hard on your left side? Things below waist level? Things above shoulder height?’
There were a lot of worst things about suffering a stroke.
‘No. I can handle stairs now, kind of, and flat surfaces are fine, but slight inclines are the worst. It’s the foot drop. I mean, I really concentrate on stairs so that’s not a problem, but I’m never ready for inclines to be difficult.’
Nevertheless, I decided that I was going to take the subway to my rehab appointments, even though my experience of taking the subway from Brooklyn to Midtown for ten years for work was that that was bad enough without having to freak out every time someone – or something – touched my left side.
Beth previewed my rou
te to Manhattan with me at the weekends, and we noted on my phone – Beth’s old one, after the one that I had lost on our visit to the Young Stroke Survivors Support Group had not, in fact, turned up – the numbers of the trains I would take, the names of the stations where I would change to avoid a mile-long walk at the far end of my journey and where I would get off, and the numbers of stops between them. Before long, I was able to make the trip into Manhattan on my own. My appointments were outside of rush hour and, clinging on to the handrail – but not for dear life – I was able to negotiate the stairs down to the platform and back up again. The route quickly became familiar as it unfolded.
When I emerged from Grand Central Station for my first appointment, I had managed to stick my way up and down stairs, change at the right station, get on the right train and get off again at the right place. I stood outside a quiet exit after rush hour had abated and spun my phone around in my hand to make sure I was setting off in the right direction. Eventually, I figured it out and made it to the ACC, proud as anything.
My latest physical therapist, Carrie, met me in the waiting area and directed me to complete a lengthy history and intake form, then escorted me into a long gym lined with treadmills facing out of windows, racks of multicoloured hand weights and one of those little wooden staircases to nowhere. Even a trampoline!
After Carrie had done some measurements to check how my movements on my left side had been limited, she showed me some stretching exercises to extend the reach of my left arm, holding my upper arm out at a right angle, placing my forearm, perpendicular to that, against a door frame, and leaning forward. Pushing against the tight resistance was oddly satisfying. Then she set me to work walking on a treadmill, and quickly identified the foot drop issue. When we sat down on a couple of the little desk chairs dotted around the room, she reminded me to concentrate on planting my left heel down first.
‘But I think you’ve got a lot of upside. Tell me, what would you like to concentrate on?’
‘Well,’ I told her, ‘my girlfriend and I live in Park Slope, and when I was in hospital, we would talk about how we wanted to be able to go running in the park together. I’d like to do that. I’d like to be able to kick a soccer ball with my daughter. Long-term, I’d like to get back to where I was before the stroke.’
‘That’s a great attitude. I think we can do that, if you’re conscientious about coming to all your sessions and doing your exercises.’
The following week, Beth and I returned to the ACC for another battery of tests, and my psychological intake evaluation. Setting up and checking in for the appointment was an exercise in occupational therapy in itself. After getting through the process, I was disorientated, anxious and generally functionally impaired. The day before I had got the appointment, I had received a call indicating that I should report an hour early for intake. Given that I’d gone through an extensive intake and check-in procedure at the same location for that first outpatient physical therapy appointment a week earlier, and had even registered for the fancy palm-scan check-in that they used, I wasn’t sure if this would be necessary. After calling every number associated with the psychology department that I could muster, I was none the wiser, since nobody picked up at any of the numbers. I left a message on the morning of my 2p.m. appointment, but nobody called back. I checked into the psychology department, and did my fancy palm-scan check-in, but nobody made any enquiry about intake documents. In fact, it didn’t come up until, just as I was comfortable that there were no problems, my doctor came to collect me for my appointment and asked the receptionist for my non-existent documentation.
So, the receptionist and I went back down to the ground floor and picked up the requisite papers and questionnaires, and I sat in the waiting area filling them in with a whole bunch of the same answers that I’d previously filled in for the physical therapy intake, together with some additional information with more of a slant towards neuropsychology. Once again, the information required was very detailed and, to a large extent, related to the facts surrounding my stroke, and the ensuing hospital stays.
I turned to the receptionist and remarked, ‘Well, at least nothing’s happened during that period to screw with my short-term memory, eh?’
Eventually, the supervising doctor decided that we would have to press on with the examination and interview part of the intake, so the balance of the paperwork would have to wait.
The examination parts of the session felt like they went OK. Counting down in leaps, identifying words and images, matching images with letters, remembering numbers and reciting them back in a different, requested, order, were all fine, except the last one was a little tricky when enough numbers were loaded on. I did manage to screw up one of the old HJD favourites, though. I knew who the president was, and the year, the month and the date. The day, though? After spending it up to that point navigating the intake procedures and going through a long, detailed informational interview – and not having a job to go to – I had no idea whatsoever.
Nevertheless, the interview portion of the appointment was pleasant enough. My doctor seemed capable, informed and business-like. What was not to like about an extensive psychotherapy-style interview? It was the closest I had come to being the subject of a feature interview in a music magazine, and as if I was a British indie star of the late twentieth century, the conversation did turn to the subject of alcohol use. We discussed it at such length that I wondered if it was something to do with my accent again. Not only had I not said anything to indicate a craving for beautiful, tasty booze, I didn’t even drink that much in the wake of my stroke.
The doctor felt the need to clarify something. ‘I’m not a teetotaller or a temperance advocate,’ she said. ‘It’s just that with the associated risks, especially for a stroke patient, we have to be sure that you’re aware of them.’
All in all, it was an educational meeting, and I got some interesting hand-outs regarding brain injuries. Perhaps most interesting was the one on right- and left-brain injuries. Beth had expressed the opinion that a having a right-brain, left-sided stroke may have been more fortunate for me than the opposite outcome, since I had been so left-side dominant that I wasn’t likely to succumb to left-side neglect or inattention to the left side of the body. The part of my hand-outs describing the effects of injuries to different sides of the brain listed something called ‘left neglect’ as a deficit resulting from a right-side brain injury. It didn’t list ‘right neglect’ as an injury resulting from a left-side brain injury. I could only guess that this was a result of our society’s bias against the left-handed among us.
In our wrap up, I learned some interesting big-picture stuff from the psychologist that I either hadn’t known previously or that hadn’t been expressly laid out for me before.
‘I agree with you and your girlfriend. You shouldn’t even be thinking about returning to any type of work until you’ve completed your rehab at Rusk. If you go back to work earlier, you’ll be at risk of utilising coping strategies that are likely to be disadvantageous to your long-term recovery. If you’ve been referred to Rusk, you’ve had a serious injury. You’d benefit from attending weekly rehabilitation sessions and, again, working would interfere with your rehabilitation needs. I would recommend that you start psychological rehabilitation, and I’m going to set the wheels in motion for you to attend weekly individual psychotherapy sessions. Hopefully, those should start in February.’ She made some notes.
‘What should we do in the meantime?’ I asked.
‘Just keep doing what you’re doing, and don’t overdo it.’
She then went on to tell me that when a patient has made an encouraging recovery, and is used to operating at a high level of functionality, other folks may be less likely to notice their deficits. That’s why, according to the Brain Injury Association of New York State, education of the individual with a brain injury, their family, employer, case manager and others is extremely important. If the individual, family, employer and others do not understand
the injury and its effects, inappropriate treatment may follow. So I had been referred for a full bank of neuropsychological tests, and ongoing appointments in the psychology department.
In the meantime, I kept doing what I was doing, and as the weeks of physical therapy passed, Carrie had to delve deeper into her bag of PT exercises and get a bit creative to extend the anticipated limits of my physical upside. After jumping, two-footed, over a line taped on the gym floor, I progressed to jumping over small objects.
‘Great! Now, have you got your phone? Cool. Do you consider yourself a New Yorker? We’re New Yorkers, right?’
‘Yeah. I fold my pizza before I eat it. I’ve watched a guy squeeze a bottle of mayonnaise all over a subway seat, and be so crazy that he didn’t even hang out at the other end of the carriage to see people’s reaction. I’m not proud to admit it, but I’ve picked up an egg salad sandwich I’ve dropped on the Queens Plaza subway platform. It was a really good sandwich.’
‘Wow. That’s a soft filling! You are a New Yorker.’ She paused, and tapped away on her phone. ‘OK, I’m gonna send you a text. You’ve got to be able to walk and text if you’re a New Yorker, right?’
I walked along the wooden flooring that ran around the gym, reading Carrie’s message and glancing up and tapping in and glancing up and not walking into someone and sending a reply and feeling pretty good about things.
In time, my physical therapy session was scheduled to allow me to come straight from a visit with Ilana, my psychological therapist. She was a senior psychologist at Rusk and had a few years’ extra life experience on me, too. I felt I could talk to her, which I suppose was the point. There was no stereotypical couch; we sat across from each other at her large wooden desk and talked. Early on, after she had gleaned my own impressions of my deficits, she recapped and enlarged on some of the results of that initial neuropsychological intake evaluation.
Stroke Page 17
