PSSU
By Shaista Tayabali
We are here to awaken from the illusion of our separateness.
– Thich Nhat Hanh
Some days, I am so tired, I can't be my best hospital self.
Like that’s a thing.
But it is a thing because I've made it a thing. I see it reflected around me. We try to be cheerful and humorous to keep the staff going, to keep up one another's morale. We smile knowingly at each other. Implicit is the acceptance that we are here for one another, but we can't talk, not yet. The clear or murky fluids drip into our veins. Some of us sleep. Some have gadgets. Occasionally, a paperback makes a surprising cameo.
I haven't seen Clive James here in a while. I don't see as many familiar faces as you might expect after six years of regular infusions in the same ward. Maybe we are simply too tired to etch each other onto our mental drawing boards. Too much pinned on there.
A man on my right today had a nice, gentle energy about him. Nodding at me, smiling patiently. I'm here, his smile offered. I couldn't take his gift of temporary friendship for several hours. I curled into my blanket, buried my face in my pillow. Amanda Palmer through my earphones. My heart cantankerous at 84, then 96. My head swarmy, swampy. Bees in my head. Trying to listen to my own thoughts. Forced to listen to the bee-beep beeping around me.
I take pictures in my head of nurse-patient interactions. There’s an art project here, a best selling book, waiting to happen: A Collection of Human Moments in Unexpected Places. We all have them.
Then, finally, I turn to the man beside me. With each question and answer, we piece ourselves together for each other. We get each other. We are each other.
He is 71. He has Wegener's. He is on Rituximab, like me; it's working the best of all the drugs for him, like it is for me. We've been through the same hoops.
Isn't it impossible to answer the question, ‘How are you?’ I ask him.
Impossible, he agrees. How long have they got? They'll never ask us again. So we lie. We're fine! we chortle together. Like we're in a pub or having a pot of tea in a warm kitchen, biscuit tin at the ready.
Do you bruise? I ask.
All the time, he says.
And then he says: 'But you don't look sick!'
I am about to tell him about the website dedicated to that phrase, but I refrain.
I have glaucoma, I say.
Me too, he says.
We have the same doctor.
He pulls up his rucksack off the floor and rummages around. He produces his prescriptions, thicker than mine. I read it, a witness. I recognise many of the same treatments. He shows me little pots of pills for morning, afternoon, night.
They've taken bone from his hip to replace eaten away bone from his ear.
He talks, I listen. I hear the lilt of Cork in his accent. He tells me his name. Michael. A good, solid name, I say. His face scrunches up, happy to agree. He is ruddy cheeked which, if I didn't know better, I'd turn into the Southern Irish cliché. But I know better. He's on steroids. It turns all of us into ruddy-faced hamsters.
There's more. He loves India. He worked near Bombay for a company that my grandfather Rustom worked for. His mother's people are from Cahir, Tipperary, where a friend of mine lives. Where I have been. His father was from Limerick. He has people in Boston, in the Bronx. His niece has lupus. Our immigrant and patient tales converge and diverge so naturally it's as though we don't need to meet again. What will there be to say? Haven't we said all that matters already?
Like most patients on Rituximab, he is somehow able to tolerate the fastest rate of infusion. 400 mg/h. Doesn't your heart explode with the speed? I ask. I didn't feel so good the last time, he confides, as his transport arrives. He gathers his bits and pieces together, looks around in case he has missed anything. He leans down to me. I place my hand in his and we wrap our spare hands around our clasped ones.
Good bye, my girl, he says. Or was it God bless, my girl?
I forget now, as I wait for someone who loves me to come be my transport, and carry me home. I just remember he called me his girl. And I am. Michael's girl.
The dots connect over and over again when you live long enough to see the circles, the looping friendliness of human connections. As much as I forget, I remember.
Sometimes my mother will remind me of an incident from the wards. Remember when you gave your slippers away to that woman? I can't remember. Remember when you left money under the pillow for the Ponds cream lady? Yes, her I remember, because I wrote her into a poem called "Brief Encounters":
Names come and go on the wards.
Only an impression lingers long
after the cheery farewell and,
‘Hope to never see you back here!’
Katrina, nurse from Belfast,
remembers me from university.
Dolly, blithe spirit, wonders,
‘Would you believe I’m 90?’
Louise, with the rare cancer,
talking without a voice box;
Edna, Joan, Quiet Ann,
women, their lives unplanned
for days like these,
days that erase our femininity.
Dolly had been on the same ward for months. She had been an inpatient in one hospital, then another for years. The hospital staff didn’t know what to do with her. She had no one to call her own, and no one seemed to be prepared to take the responsibility of sending her back home. A gentle dementia had settled in. Her world had shrunk to the parameters of a single bed behind a blue paper curtain. She was proud of her skin. She had always been a Ponds girl, like her mother. She had no money of her own. I couldn't bear the thought that she could buy nothing from the trolleys that trundled past her twice a day. A small injustice I could rectify before I was discharged. I tucked money under her pillow.
I don't know what became of Dolly.
I never know what becomes of my fellow inpatients. I have to leave them in the hands of the unknown and trust.
A few months ago Immunology asked if I wanted to self-inject the immunoglubulins I receive every three weeks to bolster my ravaged immune system. It will make your life so much easier, the nurse enthused. Just a couple of hours in your tummy, every week, in the comfort of your own home.
She gave me a trial stomach injection of 10ml. It hurt and where the needle invaded, my stomach swelled into a small hillock. Oh, yes, that happens the first few times, the swellings, the bruises, but then you'll get used to it!
This said cheerily, as though she were conferring a gift on me.
The gift of what exactly? Loneliness?
I like coming into hospital.
There. I said it.
PSSU, which stands for Patient Short Stay Unit, is a little community of friendly faces, wry deathly humour and sickness gags. Of both kinds.
I meet people. Occasionally, when I do bump into familiar faces, names rarely retain, but the sense of fellowship once instilled over IVs and beeping motor pumps is impossible to sever. A woman recognised me because, the last time we had been inpatients together, I had inflicted a leaf on her with a poem inscribed on it. I had been practicing ninja poetry that day – penning lines from my poems onto autumn leaves and then taping leaves on the hospital walls. Someone caught me in the act and told me off. Said it wasn’t hygienic. I’ve never done it again. But I might.
When I read Albert Espinosa’s The Yellow World, I experienced the old jealousy that cancer patients seem to have their own world in fiction and reality (fellow ‘Eggheads’ - Espinosa’s term), a byword for a certain kind of hell-in-life, a snug shared snark. But I think I do have that, to a less intense extent here on PSSU.
I met a young man who could easily have been Albert Espinosa in disguise. He was freshly graduated and didn't mind letting everyone know he was now part of The First Class With Honours brigade. Me too! I wanted to boast, but it was his moment. He was very cool in a Cool Patienty sort of way, showing off the expensive diabetes contraption attached to his flesh. We discussed the possibility of subcutaneous infusions and being an expert, he had some good advice about it. He talked a mile a dozen, but what I really envied was his life in his usual hospital, on his usual ward. 'Everyone knows each other. We've all been coming there for years. We have the same three nurses. It's brilliant!' And then he drops the real gem - they're allowed to manage their own drips. I have never been allowed to manage my own medication on the infusion bay. How green I felt. How green with envy.
I noticed Lena first. I wrote a Facebook status about her extraordinary ability to dress immaculately, always wittily, in spite of lost hair and (later, I discover) a stomach port into which she has to self-inject everything from medicines to liquid food. She has gastro paresis. She throws up every day. She misses her parents and is adored by her tousled haired niece. She used to be the head of a primary school. She can’t work any more.
Having lupus is like being citizen of every country and belonging to every nationality of the human condition. A bold statement but it is rare for me to meet someone experiencing a symptom that I haven't partaken in to a lesser or greater degree. Of course, there are some conditions utterly impossible to relate to, like the man who claimed he had holes in his body and was bleeding out, beneath his skin. He said the doctors weren’t taking him seriously. He was pale, clammy, inspite of regular blood transfusions. He seemed fairly young but his hair had turned white. I wrote a dark piece of flash fiction about him.
Antonia travels from Italy every few months for her treatment. She wishes she had been born English. She has an affinity for England, but it is also clear that her week living in dormitory-style accommodation on the hospital grounds is an escape from the grisly monotony of having to answer the question 'How are you?' with a suitably sociable response.
One night when my inability to tolerate the rate of Rituximab fast enough had resulted in an overnight stay, I met Kerry. She had a shell-shocked look about her I recognized instantly. Nothing can prepare you for being dehumanised if you are used to a certain way of life. Being a woman in control. Running the household, feeding the children, minding the husband.
We talk.
She is a dinner lady; her husband works with CCTV. One day she sees a line appear across her right eye. Things go dark below that line. A little later, the same darkness above the line. Now she is blind in that eye. She visits the GP who sends her to an ophthalmologist. She is told it is either multiple sclerosis or optic neuritis. Of the two diagnoses, she is told MS is the better option. She has an MRI scan. All clear. The eye surgeon feels sure this is a one-off and tells her in July that this will not happen again. She needs only to be vigilant. But of what, he is unable to say. Visual disturbances, she supposes. I meet her in December. The first thing I notice when she changes into a matching set of pyjamas with a tightly fitting sleeveless top is how fit she looks. How toned her arms. She looks coiled and ready for a run.
She is ready to run. She has been administered intravenous steroid infusions as well as swallowing 60mg of oral prednisone daily. She wants to break out of her skin like a Marvel superhero. She is growing teeth and claws she never knew she possessed. She can feel them growing. I'm becoming so horrible, she confides. She tells me, guiltily, of the loveliness of the four men in her life: she has three sweet sons. She wonders how I am able to be cheerful, buoyant even. She tells me I look younger than my years.
I am meeting myself every time I encounter a stranger on the ward with that particular shell-shocked vacant expression. It's like they've pressed the pause button, and are waiting for someone to press rewind.
I am living proof that the rewind button does not exist.
And every time the forward button is pressed, things get cumulatively worse.
They don’t know that. Yet.
I seem to represent a peculiar but particular kind of comfort. The comfort of coping. If they knew how long it took me to learn, would all comfort dissipate?
– Thich Nhat Hanh
Some days, I am so tired, I can't be my best hospital self.
Like that’s a thing.
But it is a thing because I've made it a thing. I see it reflected around me. We try to be cheerful and humorous to keep the staff going, to keep up one another's morale. We smile knowingly at each other. Implicit is the acceptance that we are here for one another, but we can't talk, not yet. The clear or murky fluids drip into our veins. Some of us sleep. Some have gadgets. Occasionally, a paperback makes a surprising cameo.
I haven't seen Clive James here in a while. I don't see as many familiar faces as you might expect after six years of regular infusions in the same ward. Maybe we are simply too tired to etch each other onto our mental drawing boards. Too much pinned on there.
A man on my right today had a nice, gentle energy about him. Nodding at me, smiling patiently. I'm here, his smile offered. I couldn't take his gift of temporary friendship for several hours. I curled into my blanket, buried my face in my pillow. Amanda Palmer through my earphones. My heart cantankerous at 84, then 96. My head swarmy, swampy. Bees in my head. Trying to listen to my own thoughts. Forced to listen to the bee-beep beeping around me.
I take pictures in my head of nurse-patient interactions. There’s an art project here, a best selling book, waiting to happen: A Collection of Human Moments in Unexpected Places. We all have them.
Then, finally, I turn to the man beside me. With each question and answer, we piece ourselves together for each other. We get each other. We are each other.
He is 71. He has Wegener's. He is on Rituximab, like me; it's working the best of all the drugs for him, like it is for me. We've been through the same hoops.
Isn't it impossible to answer the question, ‘How are you?’ I ask him.
Impossible, he agrees. How long have they got? They'll never ask us again. So we lie. We're fine! we chortle together. Like we're in a pub or having a pot of tea in a warm kitchen, biscuit tin at the ready.
Do you bruise? I ask.
All the time, he says.
And then he says: 'But you don't look sick!'
I am about to tell him about the website dedicated to that phrase, but I refrain.
I have glaucoma, I say.
Me too, he says.
We have the same doctor.
He pulls up his rucksack off the floor and rummages around. He produces his prescriptions, thicker than mine. I read it, a witness. I recognise many of the same treatments. He shows me little pots of pills for morning, afternoon, night.
They've taken bone from his hip to replace eaten away bone from his ear.
He talks, I listen. I hear the lilt of Cork in his accent. He tells me his name. Michael. A good, solid name, I say. His face scrunches up, happy to agree. He is ruddy cheeked which, if I didn't know better, I'd turn into the Southern Irish cliché. But I know better. He's on steroids. It turns all of us into ruddy-faced hamsters.
There's more. He loves India. He worked near Bombay for a company that my grandfather Rustom worked for. His mother's people are from Cahir, Tipperary, where a friend of mine lives. Where I have been. His father was from Limerick. He has people in Boston, in the Bronx. His niece has lupus. Our immigrant and patient tales converge and diverge so naturally it's as though we don't need to meet again. What will there be to say? Haven't we said all that matters already?
Like most patients on Rituximab, he is somehow able to tolerate the fastest rate of infusion. 400 mg/h. Doesn't your heart explode with the speed? I ask. I didn't feel so good the last time, he confides, as his transport arrives. He gathers his bits and pieces together, looks around in case he has missed anything. He leans down to me. I place my hand in his and we wrap our spare hands around our clasped ones.
Good bye, my girl, he says. Or was it God bless, my girl?
I forget now, as I wait for someone who loves me to come be my transport, and carry me home. I just remember he called me his girl. And I am. Michael's girl.
The dots connect over and over again when you live long enough to see the circles, the looping friendliness of human connections. As much as I forget, I remember.
Sometimes my mother will remind me of an incident from the wards. Remember when you gave your slippers away to that woman? I can't remember. Remember when you left money under the pillow for the Ponds cream lady? Yes, her I remember, because I wrote her into a poem called "Brief Encounters":
Names come and go on the wards.
Only an impression lingers long
after the cheery farewell and,
‘Hope to never see you back here!’
Katrina, nurse from Belfast,
remembers me from university.
Dolly, blithe spirit, wonders,
‘Would you believe I’m 90?’
Louise, with the rare cancer,
talking without a voice box;
Edna, Joan, Quiet Ann,
women, their lives unplanned
for days like these,
days that erase our femininity.
Dolly had been on the same ward for months. She had been an inpatient in one hospital, then another for years. The hospital staff didn’t know what to do with her. She had no one to call her own, and no one seemed to be prepared to take the responsibility of sending her back home. A gentle dementia had settled in. Her world had shrunk to the parameters of a single bed behind a blue paper curtain. She was proud of her skin. She had always been a Ponds girl, like her mother. She had no money of her own. I couldn't bear the thought that she could buy nothing from the trolleys that trundled past her twice a day. A small injustice I could rectify before I was discharged. I tucked money under her pillow.
I don't know what became of Dolly.
I never know what becomes of my fellow inpatients. I have to leave them in the hands of the unknown and trust.
A few months ago Immunology asked if I wanted to self-inject the immunoglubulins I receive every three weeks to bolster my ravaged immune system. It will make your life so much easier, the nurse enthused. Just a couple of hours in your tummy, every week, in the comfort of your own home.
She gave me a trial stomach injection of 10ml. It hurt and where the needle invaded, my stomach swelled into a small hillock. Oh, yes, that happens the first few times, the swellings, the bruises, but then you'll get used to it!
This said cheerily, as though she were conferring a gift on me.
The gift of what exactly? Loneliness?
I like coming into hospital.
There. I said it.
PSSU, which stands for Patient Short Stay Unit, is a little community of friendly faces, wry deathly humour and sickness gags. Of both kinds.
I meet people. Occasionally, when I do bump into familiar faces, names rarely retain, but the sense of fellowship once instilled over IVs and beeping motor pumps is impossible to sever. A woman recognised me because, the last time we had been inpatients together, I had inflicted a leaf on her with a poem inscribed on it. I had been practicing ninja poetry that day – penning lines from my poems onto autumn leaves and then taping leaves on the hospital walls. Someone caught me in the act and told me off. Said it wasn’t hygienic. I’ve never done it again. But I might.
When I read Albert Espinosa’s The Yellow World, I experienced the old jealousy that cancer patients seem to have their own world in fiction and reality (fellow ‘Eggheads’ - Espinosa’s term), a byword for a certain kind of hell-in-life, a snug shared snark. But I think I do have that, to a less intense extent here on PSSU.
I met a young man who could easily have been Albert Espinosa in disguise. He was freshly graduated and didn't mind letting everyone know he was now part of The First Class With Honours brigade. Me too! I wanted to boast, but it was his moment. He was very cool in a Cool Patienty sort of way, showing off the expensive diabetes contraption attached to his flesh. We discussed the possibility of subcutaneous infusions and being an expert, he had some good advice about it. He talked a mile a dozen, but what I really envied was his life in his usual hospital, on his usual ward. 'Everyone knows each other. We've all been coming there for years. We have the same three nurses. It's brilliant!' And then he drops the real gem - they're allowed to manage their own drips. I have never been allowed to manage my own medication on the infusion bay. How green I felt. How green with envy.
I noticed Lena first. I wrote a Facebook status about her extraordinary ability to dress immaculately, always wittily, in spite of lost hair and (later, I discover) a stomach port into which she has to self-inject everything from medicines to liquid food. She has gastro paresis. She throws up every day. She misses her parents and is adored by her tousled haired niece. She used to be the head of a primary school. She can’t work any more.
Having lupus is like being citizen of every country and belonging to every nationality of the human condition. A bold statement but it is rare for me to meet someone experiencing a symptom that I haven't partaken in to a lesser or greater degree. Of course, there are some conditions utterly impossible to relate to, like the man who claimed he had holes in his body and was bleeding out, beneath his skin. He said the doctors weren’t taking him seriously. He was pale, clammy, inspite of regular blood transfusions. He seemed fairly young but his hair had turned white. I wrote a dark piece of flash fiction about him.
Antonia travels from Italy every few months for her treatment. She wishes she had been born English. She has an affinity for England, but it is also clear that her week living in dormitory-style accommodation on the hospital grounds is an escape from the grisly monotony of having to answer the question 'How are you?' with a suitably sociable response.
One night when my inability to tolerate the rate of Rituximab fast enough had resulted in an overnight stay, I met Kerry. She had a shell-shocked look about her I recognized instantly. Nothing can prepare you for being dehumanised if you are used to a certain way of life. Being a woman in control. Running the household, feeding the children, minding the husband.
We talk.
She is a dinner lady; her husband works with CCTV. One day she sees a line appear across her right eye. Things go dark below that line. A little later, the same darkness above the line. Now she is blind in that eye. She visits the GP who sends her to an ophthalmologist. She is told it is either multiple sclerosis or optic neuritis. Of the two diagnoses, she is told MS is the better option. She has an MRI scan. All clear. The eye surgeon feels sure this is a one-off and tells her in July that this will not happen again. She needs only to be vigilant. But of what, he is unable to say. Visual disturbances, she supposes. I meet her in December. The first thing I notice when she changes into a matching set of pyjamas with a tightly fitting sleeveless top is how fit she looks. How toned her arms. She looks coiled and ready for a run.
She is ready to run. She has been administered intravenous steroid infusions as well as swallowing 60mg of oral prednisone daily. She wants to break out of her skin like a Marvel superhero. She is growing teeth and claws she never knew she possessed. She can feel them growing. I'm becoming so horrible, she confides. She tells me, guiltily, of the loveliness of the four men in her life: she has three sweet sons. She wonders how I am able to be cheerful, buoyant even. She tells me I look younger than my years.
I am meeting myself every time I encounter a stranger on the ward with that particular shell-shocked vacant expression. It's like they've pressed the pause button, and are waiting for someone to press rewind.
I am living proof that the rewind button does not exist.
And every time the forward button is pressed, things get cumulatively worse.
They don’t know that. Yet.
I seem to represent a peculiar but particular kind of comfort. The comfort of coping. If they knew how long it took me to learn, would all comfort dissipate?
Shaista Tayabali is a writer living in Cambridge and a long-time blogger at www.lupusinflight.com. Her poems have appeared online and in print, and have been carved into stained glass by an Oxford glassworks artist. She regularly contributes to BBC radio, and medical newsletters and journals such as Hektoen International, IGI Global and BMJ. She is working towards completing her memoir Blind Wolf, Butterfly Woman. "PSSU" is its first chapter.
