Stroke

by Ricky Monahan Brown

  ‘It reflects the same sort of things you describe. Some people might not appreciate the difficulties you’re experiencing because of your premorbid level of education and professional attainment, but the way these tests work, they can establish from, say, your vocabulary, what your baseline pre-stroke performance might have been.’

  ‘Oh, that’s cool,’ I remarked. It was. That struck me as really clever.

  ‘So, as well as the significant reduction in your processing speed, you’re experiencing what we call increased attentional variability, which negatively impacts your memory. Are you familiar with the DSM?’

  I was, kind of. ‘I’ve heard of it. It’s some sort of desktop reference for mental health, isn’t it?’ Beth is fascinated by it, and has always wanted a copy for herself. My friend and helper and lover, who, without knowing it, had been preparing for so long for that moment when her vocation would reveal itself.

  ‘That’s right. It’s the Diagnostic and Statistical Manual of Mental Disorders. It’s a publication of the American Psychiatric Association, and we use it to diagnose and classify mental conditions. In addition to those cognitive changes, the reduction in processing speed and the attention issues, you’ve been diagnosed with the DSM IV diagnosis of adjustment disorder with anxiety. This diagnosis isn’t unusual for individuals who have been through a life-changing traumatic event.’

  She paused while I absorbed this new information.

  ‘Well, that certainly adds up,’ I smiled, wryly.

  ‘If you agree, I think that our treatment goals should include building awareness, understanding and acceptance of the changes in emotional and cognitive functioning that you’ve experienced as a result of your stroke?’

  ‘That sounds good. Thanks.’

  Then Doctor Grunwald gave me a piece of advice that I wished I’d received ten years earlier, and that I’ve carried with me ever since: ’Recovery from a stroke is a lengthy process,’ she said. ‘It’s not unusual for it to take two years or more for someone to reach the upper limits of their recovery. So it’s good that you’re aware of the changes that you’ve experienced and that you’re working hard to change the things you can. There may be other things you have to accept.

  ‘You know, when I was going through school to get my PhD, I was going through a difficult period. I was having problems with my mother and the work was difficult, and I came across this thought experiment that I’ve found very helpful. If you’re experiencing a problem in life, and finding it hard to get past, visualise your life in two years’ time and see how the problem looks then. If it’s not a problem any more, don’t worry about it too much. If it is, well, then you’re going to have to do something about it.’

  I enjoyed my weekly visits with Doctor Grunwald and my thrice-weekly physical therapy sessions. My intake evaluation had been right. Rehabilitation is a full-time job. One evening after Beth got home from work, we sat in front of the telly, discussing the events of that day and the previous day. There were large chunks I couldn’t remember. With the help of the calendar on my phone, I was able to say where I’d been, and when. However, if you’d asked me to describe any of those places? I would have had no idea. I had been increasing the amount of stuff I was doing, and I could hardly believe how quickly I had maxed out into exhaustion, forgetfulness and clumsiness.

  ‘But, you know,’ I thought to myself, ‘I’m kinda messed up. It is what it is. Maybe things will be better in two years.’

  Fortunately, the next day was a day off for me. Beth’s alarm rang at the usual time, and she headed off to the Financial District with a reminder to me to get up and shower, do my exercises and get some minor chores done. The next thing I knew, there was somebody at the door.

  Beth walked in. ‘I knew I’d find you in bed. Did you get my texts?’

  I rolled over in bed and reached for my phone. Over two hours had passed. The first missed text read, ‘I’ve just been laid off. Coming home now.’

  17

  Disability and Benefits

  It seemed as if every time our love story cleared a hurdle, another impossible challenge would spring up in front of Beth and me. Just a short while before she lost her job, I had made a list of 30 Things I Can Do Today That I Couldn’t Do Until Relatively Recently. Like a researcher working for a programme listing twenty sexy Brits for an American audience, I had had to stretch a bit.

  1. Walk down stairs without hanging on to the banister for dear life.

  2. Ride a stationary hand bike.

  3. Have the foggiest idea what a stationary hand bike is.

  4. Walk to Methodist Hospital in less than an hour.

  5. Kneel down.

  6. Get cereal off the top of the kitchen cabinets.

  7. Knock up a delicious dinner for two without swearing one fuck of a lot.

  8. A comedic soft shoe shuffle (with the emphasis on comedic).

  9. Arm curl a canister of flour.

  10. Towel myself down with some degree of vigour.

  11. Brush my teeth by moving my left hand, and not my head.

  12. Get up in the morning.

  13. Sign my signature without too much discomfort (though just as illegibly as before The Event).

  14. Turn my left hand palm up.

  15. Go a couple of hours without bursting into tears.

  16. Throw in a football (that hurts).

  17. Reset the water heater in less than half-an-hour.

  18. Take my blood pressure without feeling depressed.

  19. Take two Labetalol high blood pressure pills without suffering a fainting fit.

  20. Spontaneously think about breaking into a jog. Before realising that’s not going to happen, obviously.

  21. Stay up a little late.

  22. Walk without hyperextending my knee.

  23. Use a hospital toilet without getting nostalgic for the ‘Pull for help’ cord.

  24. Not perseverate.

  25. Not perseverate.

  26. Not perseverate.

  27. Not perseverate.

  28. Not perseverate.

  29. Not perseverate.

  30. Not perseverate.

  By the time we had done a post mortem on the events of the morning, I had realised that I was going to have to delete numbers 12 and 21 from the list and add another couple of Not perseverates. I felt pretty bad about that.

  The shortest possible period after which it was tolerable to terminate an employee returning to full-time work after their partner had suffered a near-fatal injury had elapsed, and Beth had been made to suffer that cruel Financial District fate where you’re called into a meeting and told to bring your essential items with you. Because when the meeting is done, obviously, you’ll be escorted to the main door and anything you’ve left behind will be sent to you at the earliest opportunity. As the scene unfolded, Beth was numb and just needed someone to tell her things were going to be OK.

  Her love had saved me, in the most literal sense. I had been strolling in my grandfather’s garden, considering the state of my face, and feeling very tired. Somewhere in the background, there was an inkling of how hard it was going to be to dig myself out of the grave and get fixed. I was ready to rest. Then, in my blood-soaked mind’s eye, I had a vision of Beth. I remember seeing her smile, and, most strikingly, her eye. Her left eye, specifically. I’ve described her eyes as hazel, but really they are brown around the pupil, and then a grey-ish colour as you approach the edge of the iris. The brown looks as if it generates its own light, and never more so than in that moment. The vision was so vivid that I sometimes wonder if I had regained consciousness for a few seconds, even though I know I didn’t. Regardless, I knew in that moment that I had to come back. I wasn’t even sure that I would be able to come back to stay, but I had to tell my girlfriend that I had loved her, loved her still, and that everything was going to be OK. Or that she’d be OK, at least. I didn’t get to do that in the moment, but the thought got me close enough to the shore that she, with the help of the EMTs
and Doctor Ayad, was able to drag me back to the land of the living.

  As Beth, who’d been my rock for these past months and longer, made her way home from being sacked, I was sleeping a deep and dreamless sleep.

  What made things even worse was that we would no longer be able to make the so-called COBRA payments to my health insurer that had enabled me to continue my health insurance coverage and avoid having to pay the million-dollar sticker price for saving my life, keeping me alive and continuing my rehabilitation regime. We accelerated our efforts to secure disability benefits for me, and began to look into securing food stamps.

  The initial online application for disability benefit was designed in such a way that this cognitively challenged guy needed more than three attempts to complete it. I had heard word of a severely hemiplegic patient who had had an initial application rejected.

  After that, I was also required to submit a written submission and attend a follow-up interview to fill in the stuff the Social Security Administration had still missed. The mailing address for certain material I had to submit was that of the New York state offices in the state capital, Albany. With a zip code in the state of Kentucky.

  The whole process seemed hopeless and crazy. My favourite part was receiving yet another letter simply informing me that a failure to turn up for an appointment to submit my material could result in a dismissal of my case. No mention of an appointment itself, or a time or place; no request for any further materials.

  When your confidence in your mental state is already shot, receipt of such a letter can really fuck with you.

  Eventually, we found out that the final submission of my claim was to be made at the Social Security office in Brooklyn. When Beth and I arrived for the appointment, it was as if we had stepped into an episode of that show The Americans, where the KGB sleepers settle near Washington DC. Not in the sense that the state had arranged for a spy to be waiting at the offices to offer us sexual favours, but in the sense that, although I was living in the US, I felt like I had a good understanding of what it was like in the Soviet Union of the eighties. The facade of the social security office was the embodiment of classic Urban Brutalism, and the length of the early-morning line outside suggested that we were all queuing for bread. The rush into the building when it opened and the old ladies in headscarves having screaming rows with the security staff backed that up, too. I didn’t think Stalinists would have tolerated the stink of piss in the elevators, though.

  The woman who collected my materials and submitted them for evaluation at the state office was nice enough. Ilana had already told me, though, that no one was successful with their first application, and we would have to appeal to have any hope of getting anything.

  When Paul and Jen found out about the latest developments in our lives, they took us out to the farm for the weekend. Even given what had recently occurred, the rolling, green countryside was relaxing. Or as relaxing as it could be in the circumstances. We talked, we ate, we read. We strolled through the local, open shopping mall. There was a light rain, almost a Scottish smirr, hanging in the air. It wasn’t that bothersome, other than it felt peculiar on my left cheekbone, which made me sad.

  By the time we got home from our visit with our friends, Beth had run the numbers and the scenarios. Sitting at the dinner table, she told me that with no income except, possibly, at some undetermined point in the future, disability benefits, and the COBRA payments and the New York rents and the utility bills and my unemployability and the continuing sluggishness of the financial employment market and her total exhaustion, we were going to have to do something, and quickly.

  ‘Do you remember,’ she asked, ‘when we first started dating, you said that you’d only planned to come to the States for a couple of years?’

  ‘Yeah. That escalated quickly.’

  ‘And how we always thought that at some point, we’d move to Scotland, but there didn’t seem to be any way for us to get there? Now there’s no way for us to stay here.’

  As soon as she said it out loud, there was no decision to be made. It had been made for us.

  The next day, we called my father to ask if we could stay with him for a bit.

  ‘It won’t be for long,’ I told him. ‘Just long enough for us to suss things out and get on our feet. We’ll pull our weight. Do stuff around the house.’

  I hardly even knew how to ask. Just a few short months ago, I’d insensibly held an imaginary phone to my ear in my hospital bed and sobbed to my father who wasn’t there, ‘I’m sorry. Oh god, I’m so, so sorry.’

  Sorry that I hadn’t been home more often. Sorry that I hadn’t called more often. Sorry that I hadn’t written more letters. Sorry that I hadn’t seen Mum one more time. Sorry that I’d almost gone and died without saying goodbye. Just, sorry. So, so sorry.

  That day, he said to me, ‘Of course you can stay. If you can’t rely on family, who can you rely on?’

  I should have wept then.

  Now the decision was real, and we had a finite amount of time to make it all happen, the weary young woman and her broken beau. Thankfully, we didn’t even realise that it was impossible. We just kept doing the next thing.

  We started applying for an unmarried partner visa. At our initial meeting in another sleek Midtown office, our immigration lawyer outlined the hoops we would need to jump through, like evidencing two years of cohabitation and the genuineness of our relationship. Evidence that, if you’ve never had to prove these things, you wouldn’t think to gather. How do you write the thing that keeps you up in a little hospital waiting room with a short, two-seat, faux leather sofa and keeps you going and going and going and going?

  In March, our first application was refused. We gathered more joint bills and got letters from museums and galleries setting forth our family memberships and letters from my doctors. Most of all, we got letters of support from our friends. We got one from Paul and Jen. We got one from Kirk and his wife Andrea. We got one from Cole. We got one from Beth’s old flatmate Mat. We provided each of them with a suggested form, and they each asked if they could make changes to the letters, add embellishments, personalise them. Jonathan asked if he could just go ahead and rewrite his.

  As I am sure has been disclosed to you, he wrote, last year, my friend Richard suffered an untimely stroke. It is not an understatement to say that this was a life-changing event – and I would be remiss to not say that I feared for my friend’s life. Beth was by his side through it all. Whenever I was there but she was not present, he would ask me when she would be returning. His life had changed, and in a perverse twist, while much in his life was clouded and confused, his most critical survival requirements were crystal clear to him – he needed Beth. I watched as she stayed by his side as their lives literally changed overnight. She didn’t waver, or falter: she personified what it means to be a partner. Her life was with him, whatever the circumstances, and in the early days after the stroke, those days seemed grim. But stay she did, and thrive because of that he did.

  As the process dragged on, we continued to put one foot in front of the other. Finally, I received another ominous letter setting the appointment for me to submit myself to the physical and mental examinations required as part of my evaluation for disability benefit. When we went along that spring day, after a morning session at the ACC in Midtown, we found that the exams took place in a different building to Brooklyn’s Social Security Administration asylum. This was a building more like something from the work of M.C. Escher, but darker than the lobby at Methodist Hospital. The walls weren’t quite at right angles to each other. The floors were slippy enough to foil attempts to use a walking stick, and were slightly cambered at random intervals. To add to the feeling of Bedlam, there was a nice long wait between the mental and physical exams, during which I listened to a fellow applicant rant at length about her waiting time at a volume clearly intended to draw someone else into her solo conversation. All while another applicant stood in the corridor spitting out random letters. O
r, as the doctors might have termed it, ‘taking a sight test.’

  I was reminded of one of the old arguments deployed for stripping people of their benefits: don’t treat the disabled like they’re disabled, or they’re going to act all disabled. Sure enough, I was feeling pretty non-functional by the time I had completed my physical examination, and was finally called for my mental evaluation. The final Orwellian irony of the process was that this was taking place four months after I had started the application, and six months after my stroke. I couldn’t see how my performance today could be relevant to the amount of work I would have been able to do in November. Or December. Or January. Or . . . Well, you get the drift.

  Beth was allowed to sit with me as I was subjected to the test. It followed a pattern I was used to now. We related my medical history, then I completed tasks like naming the objects depicted in pictures that were shown to me. The examiner asked me questions about a passage that he had read to me. I copied a diagram that I was shown. I named as many animals in a minute as I could. All that sort of thing. The examining doctor asked me to remember another list of three objects, just like Ali used to do back at HJD.

  ‘Can you tell me what that the three objects were?’ he asked a couple of minutes later.

  ‘An apple, a ball and a penny,’ I replied.

  ‘Thank you. Now, remember those objects. I’ll be asking you what they were again, a little later.’

  This is too easy, I thought. I couldn’t throw this if I tried.

  I was asked to draw a series of clocks showing particular times on a series of pre-drawn circles. Finally, we came to the end of the tests.

  ‘Now, can you tell me again the list of three objects I told you earlier in the examination?’

  ‘Rug. Clock. Flower.’

  Beth turned to me after the examination was complete to whisper, ‘That was a bit much. There’s no way he’s going to fall for that.’