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My own CVA

2007; Elsevier BV; Volume: 370; Linguagem: Inglês

10.1016/s0140-6736(07)61828-5

1474-547X

Maria D. Donovan,

Healthcare Systems and Technology

I wake in the dark and try to hold on to my dream. In the dream, I am walking in sunlight, air whispering over my skin, the scent of rose petals rising in my brain, birdsong flinging over me its mesh of notes. Then the chorus disintegrates leaving a lone chaffinch chirping the same brief sequence over and over again, a musical ice-pick into the brain. I let the dream go; I wake in the dark. No machine noise. But there is a buzzing in my ear. Tinnitus? It is so dark, I wonder if I've gone blind. I try to move my eyelids, down up, down up. Only one eyelid moves, the eyelashes rasping against the sheet that's pulled up over my face. Maybe this darkness is simply the result of one side of my head being buried in the pillow and the other covered up by the sheet. Did I fall asleep again? The bed has set hard around my body. It should be soft, like lying on a cloud. It only turns solid like this when the power is off. I can do nothing about it, except wait for Hayley to come and put things right. When I first came here, Hayley used to come and turn me every 2 hours. Now I have this bed like a big bathtub covered by the baggy porous sheet on which I lie, and filled with moving granules pushed about by currents of air; I only see Hayley once or twice a day; everything else is automatic. I do not suffer from pressure sores, but loneliness. I manage to twitch the sheet away from my face. My working eye searches for the green glow lighting up the corner of the room. There it is. I'm not blind, after all, and even if the power is off the oxygen levels are OK. The green light tells me so. If it's amber, an alarm should sound. Hayley will check it all anyway. Even though she probably doesn't care much for oxygen herself—too corrosive. Not that she's made of metal, even if her face and body look silver. She's all plastic. They've given her a kind of retro-styling, which I find aesthetically quite pleasing. Her body has some interesting ventilation grilles; her eyes shine different colours from cold blue to hot orange according to the temperature of her processor. Her facial features are not all that well formed, but on her head she has a semblance of an old-fashioned nurse's cap, with silver wings folded back. I like that: it's a playful touch. No doubt it wouldn't be allowed these days. Too extravagant. But Hayley's been around for years, doing the same job. I used to send patients here myself. What time is it? Once upon a time I slept with my watch under my pillow. My good hand slides to feel for it there but there's nothing. My hand clenches and unclenches, as does my heart. Does that sound unprofessional? Not how they teach you to talk in medical school? What does it matter now? There's no one here to listen to my thoughts. I please myself. From far below there comes a whirring sound. That must be Hayley, starting her rounds. She'll open the door and let in the light. I have always been frightened of having a stroke. All through my medical training, I avoided stroke patients if I could, even though many cases were fascinating—every person has a unique experience, according to the part of the brain that shuts down. It was the fascination that frightened me. I had this oddly superstitious feeling that my very interest could draw me towards a cerebrovascular accident of my own, as if studying the condition, objectively, in other people might trigger it in myself as a kind of, if not divine then at least ironic, retribution. But for what? What had I done? I used to wonder whether I appeared uncaring, when the opposite was true: I felt. But how could I work, and do my best for the patient, if my sympathies were battered? I protected myself from feeling too much, that was all. In fact, it was a tendency to empathise, as well as the mechanical interest of working out what was wrong with someone, and the satisfaction of being able to fix it, that drew me to the profession. Genuinely, I wanted to help people, though I was careful not to mention that in interviews, in case I was marked down as having idealistic, and therefore untenable, notions of what the health service was all about. Perhaps I tried too hard to keep my distance at times. Perhaps the shell had grown a little too thick. One day a nurse started crying as I gave our patient bad news; I felt affronted. Did I not have feelings too? But what good would it do the patient to see us all standing there weeping? If I should crack? Whirr. Hayley is going fast on her rounds today, but I don't hear the sound of any doors opening. I hope she's not going to skip me. I look forward to seeing her. But home care models sometimes have to make these decisions. Maybe go faster one day to get through the work. Maybe skip one of the less important procedures so they can finish before their batteries run down. Maybe skip washing someone altogether. I mean, who would know? Who would complain? No one here. I don't even know my neighbour in the next cell. When I went into orthopaedics, I expected many happy years of seeing my patients walking out with new knees, hips, and ankles. If anyone asked me what I did for a living, I said I fixed backs and bones, careful to make my calling sound like any other kind of job, no better or worse than being a plumber or a carpenter. I didn't say this to my colleagues, but to other people, people who were perhaps plumbers and carpenters, or shopkeepers, or office workers. I didn't want them to think I considered myself in any way superior because I had several degrees and improved people's lives. Neither did I ever feel tempted to take advantage of the advanced health schemes that would guarantee me better treatment than I could offer most of the patients in my care. “She's just a girl who can't say No; she's in a turr-ible fix.” What's terrible is the way that punning line runs through my head—always as if sung by a thigh-slapping Doris Day in the musical Calamity Jane. In my long career, I did not—could not—avoid stroke patients altogether. I once had to perform a hip replacement on a woman with a severed neck of femur, the result of a fall at home. She had lost consciousness only for an instant, but she happened to be going down the steps outside her house at the time, and she fell and broke her hip. Luckily, a neighbour had found her before too long. Also the patient was fortunate in having a daughter, somewhere, who might be able to look after her. At first the old girl seemed quite amenable, saying “Yes,” to everything. But then she became quite cross and even agitated. A brain scan showed that the cause of her fall was a CVA. She had suffered no paralysis and scarcely any of the one-sided weakness we associate with stroke, but the production of speech had been affected. Quite possibly she thought she was saying a variety of different words and phrases, sentences even, long arguments; but, whatever words were forming in her head, “Yes” was the only one she was capable of uttering. That was the extent of her verbal communication. We gave her a picture board so she could point to what she wanted. The truth is, although I felt terribly sorry for the woman, she did look quite comical, sitting up in bed like a wee bird in its nest, getting more and more cross and shouting, “Yes! Yes! Yes!” over and over, and stabbing at the symbols on her picture board with a vehemence that made me want to explode with terrified laughter. I could not have done that, so I turned away. Luckily for me, her daughter turned up and used some of her own medical credits to get her mother transferred to a private ward: you know, one of those where they have experience in a little bit of everything and are not particularly shocked or troubled by anything they see. I suppose that must be interesting work too. That nurse who cried over the patient when I gave the bad news. She was one of the last human nurses I had left. That kind of emotional display made us seem unprofessional. I knew I had to make the nurse stop crying, so I asked her to come with me. We went into the linen cupboard. I could have chosen a better place, but where was there anywhere private? Not that I was used to giving bad news. Orthopaedics so often involves a happy outcome. We fixed people up and sent them on their way. But Matron was watching, taking it all in as usual. She'd be getting ready to put it all in her long daily reports; reports so long no one but a computer would care or have time to read them. I remember the resistance among some of the nursing staff when the first mechanical aids were introduced. Everyone likes to do things the way they've always been done, but as a ‘back doctor’ (as my older patients liked to call me), I was in favour of anything that could help to avoid spinal injury and long-term disability among caring professionals. As a nation, we spent too much money on training valuable staff to allow them to become invalids after a few years. I didn't know those machines would ever become autonomous, that they would replace the vulnerable human element in our hospitals. The newspaper headlines of the day exaggerated, of course. “Robodoc!” I remember seeing that word screaming from a billboard in the street, and my stomach lurched, but of course it was all just conjecture and dread fantasy. As if they could ever replace a surgeon with a robot! Not that I was ever against innovation, if it worked. Ours was the first ward to have nurses on wheels with built-in lifting equipment. They had the ability to reorder their thinking, to learn and develop beyond their core programming, to evolve. Matron was a more expensive model. You'd never have dared to call her to act as a mechanical hoist. She moved on a cushion of air, a near-silent, whispering progress. She and her kind were built to oversee, to regulate, and to last; they tended to take a long-term view about everything, especially the financial arrangements. Their programming saw to it that they always kept a metaphorical finger firmly on the bottom line. And they were, themselves, remarkably cost effective. For Matron there would be no expensive retirement, no pension, and no days off, just time for recharging, maintenance, and study built into her shift pattern. She used to do the ward rounds with me, followed by the notes trolley. The notes were there for my benefit; Matron never acknowledged the trolley or its contents if she could help it. Once the notes trolley said, “Excuse me, Matron,” so it could get past her to me, and she glided out of its way without comment and without giving it a glance. Matron's body and face were made of plastic. Different colours were available but someone had decided on the caucasian look: blue eyes, alabaster skin, and pink cheeks. She kept her face very straight as I told the woman in the bed her bad news. “The spontaneous fracture you have suffered is the result of cancer; it is already too late to do anything about it.” Did I say it that bluntly? In dealing with Matron and her ilk, had I forgotten there was a human being lying in that bed? The human nurse held the patient's hand and gave it a squeeze. The patient seemed bewildered. There were tears in the nurse's eyes. When the patient saw this, she opened her mouth. Fear entered her look. Matron glanced sideways at them both. Most disconcerting. I could not get used to the way she could swivel her face without turning her head. “Come with me, nurse,” I said. I even held out my hand and led her away. The notes trolley moved aside to let us leave the room. Matron stayed where she was on the far side of the bed, just shifting her face to stare after us. I drew the nurse after me down the hallway and into the linen cupboard. “If you want to keep your job,” I said. “If you want me to keep mine, you'd better stop crying. Now!” But she just sobbed louder than before, and I found myself putting my arms around her and hugging her to my chest just to keep her quiet. She said, “I can hear your heart beating.” That's how Matron found us. The light of the hallway glowed around her as she hovered, framed in the doorway. She said nothing, the light of her camera winking red. I saw the two of us on her monitor, embracing. Whirr. Once, Hayley was halfway through making my bed when she needed a recharge and had to plug herself in and stand in the corner for a while. It didn't really matter. It's not as if I would be getting the bill. She's a bit erratic, sometimes turning up to wash me in the middle of the night, but she likes to chat. I don't know whether the care robots were all programmed to be like that, or if she's developed the facility herself. Anyway, it breaks the silence. When I had to clear a bed and send someone home early from hospital, I blessed whoever invented robot carers. And if people didn't have anyone to visit them, well, it was just more convenient to stack them up in these pods. Like grubs in a beehive, someone said at the time. But look at it logically: I can't walk, I can't even sit up properly. If I ever managed to lever myself out of this bathtub of a bed, I'd fall on the floor. I'm going nowhere, so does it matter that the door can only be opened from the outside and that there are no stairs? Did I resign? Really, I can't remember. I woke sometime in a hospital bed, unable to move, unable to speak. Matron was looking down at me, but was it the same Matron? She had the same face, but that meant nothing. I don't think it was the same one. This was not my ward. She leant over me and said, slowly and deliberately, as if I were deaf or an imbecile, “You're in the hospital.” Simultaneously, the words ran smoothly from right to left across the monitor on her chest. I tried to say, “Don't you know who I am?” I couldn't do it. Then she mouthed the words: “You've had a stroke.” What happened to the nurse who cried? Perhaps she came to see me while I was unconscious. More likely she was fired and security would not let her back in. If she even knew. The robots looking after me in the hospital were always polite, efficient, quick, careful—and egalitarian. Not one of them acknowledged that I had any kind of medical training. I soon entered the category of patient, long-term care required. That was all they needed to know about me. Whirr. Hayley is on the level below. Soon she will open the shutters and unlock the door and put an end to this darkness. I have great hopes of Hayley, but she must work things out without my help. A robin used to come to my windowsill. So rare they are now. “Oh look!” Hayley said when she saw it. “The Christmas Card bird.” I wanted to ask her to feed it some crumbs. Whirr. The light in the corner has turned amber but there is no need now to panic. Hayley is coming, and she will let in the air. The door will open and the sun will shine on me, glancing from Hayley's silver wings. Whirr. She reaches my door. When she holds me to her chest and plumps my pillow, I will feel the warmishness of cushioned plastic. Like a fool, I'll listen for a heart beneath the shell. Whirr.