from The Trebus Project
by David Clegg
Edited by Susan M. Schultz from a rough transcript
Frances / Room 21
I can remember 3 or 4, when I was 3 or 4.
I stayed in a home with a lot of other children… my mother had a… so much… too much… of my sister. She couldn’t cope. I came too soon… too soon after my sister. My mother knew a lady who took in children… we went to her.
My father was an exporter and he did other things as well he… oh… well mostly his income came from exporting things. … and my father was an artist also. Not well known. He did… now what do you call them? Postcards… he did flowers on postcards. (She points at a bowl of flowers) This is one he did… and other pictures like that. Is this my grandfather I’m talking about?
What year would that be? I don’t remember the year I was born.
Not quite… seventies maybe… how do we find it? My grandfather was always full of laughter… He left my grandmother and took off with one of his models. I liked him very much. He had a dog… a big dog… the name will come to me soon… I’m talking myself towards it.
I was closer to my grandparents than my parents. My parents were well off.
I went to film school here in London. That would be in 19… the 1960’s… that’s when I went to America… then I came back. Film school was a joke… I started with black and white… that was interesting as you expressed yourself very clearly. It’s a very good way to communicate your ideas. That’s why I found animals interesting… they can be very expressive but not with words. I’m sure they have a language. Mother had lots of animals in the home… dogs, cats and birds… and some that were a little more experimental. Animals pick up your messages much quicker than other human beings and they also know when you’re sad.
In my work I spend a lot of time trying to find ways to communicate with people who’ve lost the ability to speak very well.
What do you call it? I think the… the memories are all tucked away… tucked away… not gone.
I have an unfortunate disease… what do you call it? The name escapes me… it’s the one where people shake a lot.
Yesterday I felt like a million miles… I could have gone up in space! I went about doing things in a way that no-one would guess that I had Parkinson’s… the whole day I felt great… I was walking briskly. I was talking to people and making myself understood… I wish it could be like that every day.
I can’t think as well when I get an attack. They haven’t been clear about the future and how long it will take to get better. I’m in the early stages. I knew a woman who was like this all the time and another… well I couldn’t stand it… she’d been a very good friend of mine… she was a burns subject… she’d been through fire… she was a Czechoslovakian lady… actually it was a he not a she… when the young lad Palach set himself on fire in protest against the Russian invasion… he set himself on fire in Leicestershire Square… Jan Palach… he set himself on fire in protest about the Russian invasion.
That was in Prague?
Yes, in Wenceslas Square… she was one of the surgeons who tended him. I met her at the radio where I worked. I remember she kept crossing her legs over and over and it drove me crazy. I decided I couldn’t see her again… we’d been good friends but I really couldn’t stand it. She’d had problems in childbirth… her son was born malformed. He couldn’t walk and he often had pain. In other ways I did what I could for the Czechs.
My family are continental Italians… that’s where the artistic side came from. My grandfather came from Sicily, but he had no association with bandits. People immediately think of the mafia. My sister has been but I never had a chance to go. I took myself to Florence and Rome and Naples instead… all on the cheap… staying in pensions. The war hadn’t started but there were fascists. I remember that the whole region was desperately poor. There were children begging for food. Actually the fascists put some things right.
I remember being bitten by bed bugs in the hotel in Naples. I remember at about 10 o’clock going to see the manager and complaining about the bed bugs. They brought someone to come and look, the manager and another person, so he wouldn’t be accused of anything. They moved me up to another room, which is just the same….the exact same furniture. I remember seeing all the olive trees from the train windows… silly places… train windows, as they passed.
I went to Venice twice… oh, it’s wonderful… especially to be alone… it’s nice to be with somebody but it’s better to be alone.
My sister was always jealous of me… jealous for my mother’s attention. She lost interest in her own life when her husband died. I had boyfriends, but nothing serious. I could have had an easier life. Bombs and snipers didn’t scare me one bit, but marriage…! I wrote poems instead. I’m the only person who ever read them. Last week my sister put them in the bin.
I use my time better here… better than I used to. My sister and others who are all usually in their place in my everyday environment, they take over. I find they are more friendly here… more likely to make contact. Sometimes… and sometimes they… let their sides down by hiding what they… what they… it’s difficult to explain… sometimes I say something that I don’t want my sister to know… it’s the condition of being here… I need to always be careful who I speak to and what I say… I have no privacy.
My sister opens my letters and I don’t like that at all… I know she really shouldn’t do that… she says she’s doing me a favour. About six weeks ago she started opening my letters… in a way I (in a very loud, clear voice) Six weeks old ago! Was it so long? Oh that’s a shock. They told her to open my letters at home so my bills would be paid… she now opens all of them including my private letters… well, they don’t mark them as private. She’s reading all my letters.
My sister said three times that I had… and it upset me… I took her to task on it… that I was mentally… what do you call it? Not insane… they were… and it wasn’t just my sister… they were all trying to prove that I was suitable material to go into the mental home… that shocked me… I know that’s what’s happening behind my back but it’s not honest. They use that phrase ‘dementia’. I had an absolute fit… well, I know my memory is not as good as it used to be… I lose track sometimes but really it’s my sister who muddles me up… she was relating my story, an incident at home… and she was telling my story to one of the carers as if it were hers.
(A nurse comes in and Lyn grimaces and shakes her head behind his back).
What was I saying? I wish they would knock. I need to tell you, I’m worried… I’m worried about the lapses of memory… and issues of memory that I can’t sort out. It’s hard work keeping on track… there are too many distractions. I have to be quick or I’ll forget what I’m saying.
I always thought I had a very good memory. Now I have the experience that a piece of memory comes unstuck. When I put it back together, other things are falling apart. I think I said to you that my grandfather took me somewhere… I think I said it was New York because… and I… I recognised the buildings because they were so much like the shallow ones opposite… and they seem part of the story.
Not shallow I mean much younger… more recent… that I wasn’t with my grandfather, it was more recent… maybe about now, I’m not sure. The view reminded me of another place when I was with my grandfather years ago, and it had all come undone… so I thought it was now. Actually I don’t remember my grandparents at all. Houses back then were very dark.
Frances’s face and arm are bruised from a succession of recent falls. An alarm has been fitted to her wheelchair to sound each time she gets up. Unfortunately the alarm has developed a fault, causing it to beep and whistle almost continuously. Frances is clearly distressed and confused by the noise. A number of carers look in. One puts her fingers in her ears and shrugs her shoulders before explaining that Frances’s family are “difficult”.
Frances’s sister has already been asked to leave the home several times as she shouts and swears at the carers and upsets the other residents. Prior to my visit Frances’s sister made a complaint about the alarm having been turned off the previous day, after which Frances got out of her chair and fell over. Frances says that I should press one of the buttons on the alarm to turn it off. She takes hold of a button on my cardigan and presses it firmly several times. “It doesn’t work”, she says. Finally a carer arrives who angrily unplugs the alarm and disconnects the battery before saying that “they can’t do right for doing wrong”.
OK… it’s not a radio… it’s something else that talks all the time… we had to listen to it… but my sister said nobody listens to it… it beeped. The man… I suppose he was showing off… he got up on the chair and pulled the plug… very brave… he might have been given a shouting-down… I think I was being watched.
I was always given to telling stories. I used to dress up in fine lace from my father’s shop and perform in the park with a huge folding dagger… and start stabbing myself all over the place. I’d be looking round to make sure people were looking at my excellent drama. I’d listen to what they’d say and put their words in my script. I kept going back over the words for years, over and over. I don’t remember whose words they were.
When I was younger I was only interested in books and writing… now all I do is drink tea. I’m wasting away… wasted labour… labour party. You lose that sense of yourself… you have somebody else pushing in. People get fed up with themselves, and fed up with life, so you go along with it. You play the part of the decrepit old woman.
My sister said three times that I was ready for the mental home. I had an absolute fit… well, I know I lose track sometimes… but we all do that. She doesn’t realise it herself but she’s squashed me flat… she’s taken everything. She’s bought me twelve summer dresses. I told her, there’s never any reason to own twelve dresses!
What I used to like was to go to Fenwick’s. They had a little table… a desk with a few chairs. Just a woman enjoying herself for a short time… looking at things she couldn’t have.
I left home when I was 16. I was living in a bed-sit. No furniture, just a bed. I was given a small allowance by my father, which put my mother against me. I wasn’t her favourite, not by a long chalk. I’d been learning shorthand for my journalistic hope… my mother stepped in to put an end to it. She asked me to leave the family home a week after my father died.
I can tell you today, my mother went in a similar care home to this one… I don’t like the fact that we put her away… so I’m denying it. She didn’t survive long. She cried when she moved into a care home… I cried when I moved in here. Apparently, when you move into a house in India they introduce cobras to guard the house. An occasional cobra isn’t such a bad thing.
I took a flat in Cyprus… I did photography for an English Language newspaper in Cyprus… still life, objects on a table, and children’s faces. It was a disaster. I was in Cyprus when the invasion happened… when the green line was drawn up. I lived at the Hilton Hotel… with a huge red cross on the top of it. A Turkish soldier told me to walk close to the walls because of the snipers.
I arrived here penniless but with plenty of smart clothes. One of my friends was shot at… by the CIA, I think. There was a lot of that kind of thing at the time. Anti-Jewishness was to blame… I read it in the papers… in small type, not big type now. She was married to a beefy obstetrician… she didn’t collude, despite what they said. I can’t remember who it was. Jim, my boyfriend, he’d know. He said it could only be America behind it. America anciently built this structure and she still wants to press all the buttons. I say ‘she’… it’s not a she… not in this case… it’s a… and the trouble in Syria… 9 – 11. I’m lost. I wanted to tell you something important… that… oh, I’m forgetting.
“This is Radio Prague”
Can you hear me? Am I speaking now?
I was there, an eyewitness… more or less. I put everything in the script… sort of reports from the frontier, where they shot her, everything. Someone else made the introduction, “This is Radio Prague… English Language section”, then I say my lines.
Some people said I could come here and talk about subjects I liked, but it was all propaganda… I wish I could make myself understood… it’s all… broken biscuits… These memories, they’re… still life… nothing more than parts…. bed and breakfast… strange items placed interestingly on a table. Is that right?
I’m so sorry, I do ramble on… I’m looking for the script. It’s still rough knitted… coarse reads. Reeds? Like the grass you find in Russian marshes? Is that right?
Who am I talking about? Jan Palach? I seem to remember his funeral… going underground… “Yes”, he said… “I don’t hang around”… He said, “let everybody know, but be careful what you say”. He was the most beautiful boy… with a lot of talent. He’d put together a book with pages… and on each page he painted a bird… in alphabetical order. It was beautiful… a child’s thing, but they’re all treasures now. Who am I talking about?
It’s my sister that muddles me up… no diplomacy… she worked for U.N. I keep saying to her, “Don’t say anything… people spy”. She laughs too loudly. She tells my story as if it were hers… over and over… “Do the remember the boy who set himself on fire? Do you remember Helen?” In the end I couldn’t see which story was hers and which was mine.
I worked for the state radio in Prague… I breathed their air… and what they got into trouble for. Not much protection for them and not much protection for me. I read articles on the radio. They wanted a new voice… I had no training at all and they… they took me, and I spoke into a microphone… no one told me how… but they said it was very nice.
The Czechs were defeated. I tried to add secret messages to the script… “Czechoslovakia will always be free”. I had to muddle my words. It seems now that I always wanted to be angrier than I was, but they treated me too kindly… my sister said someone needed to die before I get a room. It seemed strange then and it seems strange now… I said, “I’m not a communist”… and I don’t speak Czech. They said that it didn’t matter… the gardens are beautiful. It’s a nice place to die and the food is cheap!
Helen gave me my first room in Prague. We were watched… I gave her messages hidden in bars of soap. I never asked her too much about what she did in case they’d think I was a spy… she got me this room in the blue house… she said she knew a family and, well, the funny thing was that she said Czechoslovakia was free, but she’d already been in prison… her identity card was stamped with that. She’d smuggled a priest out of Czechoslovakia… he had his papers hidden in a bun. She couldn’t attend the meetings because she’d had all these problems… she got some kind of meagre allowance… but… her sister had fallen in love with a Russian officer… Helen was not happy about that… there was nothing she could do about it, and she loved her sister, so she didn’t make difficulties. I think she lodged with the woman, I’m not sure…they had two tiny rooms with a partition between.
So how did it come about that I’m here again? Was I arrested? It’s very difficult to remember. I know I’m being… was being, watched… if you shut the door it might help me remember. I was at the bus-stop… and the man was following me… and as soon as a tram came between us I ran to the building opposite… a café… and I went inside and out the back through the bathroom window. He wanted to make some contact and he was willing to risk it. I ran into the building and took the lift up here… I tried to put some people between us… I don’t think I could do it now… I’d need to take a carer.
There’s people following you and watching you… yes, and I’ve never had my liberty curbed… it’s wretched. I have to have my door open all the time. I’m really not sure what wrong I’ve done. There was an incident where I had to stand in the bathroom for ages because a man was watching me, ah… an incident this morning… or last week? Somewhere there’s a mix up… he wanted to give me a wash with soap. I don’t think I’ve got it entirely right. I think they took me for a spy.
I remember there were caves where you could go deep underground… meetings of young people in the caves… they had their own life there, the students… hanging signal lights in the trees… we would meet after work… the underground press… I was involved in a minor way… I produced pamphlets… Helen had a printing press… it was… and, ah… a risk… more for her than me… if… if the authorities were to have found out I would have been deported… she would have been killed.
Helen took me in and sized me up… she had a long miserable time in prison… a damp miserable cell… it was cold and she got neuralgia from the water dripping on her head… she was only 19 when she went into prison… a very innocent Catholic girl… not experienced in life… I didn’t like to ask her about it… she was a very pretty girl… beautiful in fact… she was so shocked… after that she never married and never had a boyfriend… 6 foot tall and beautifully slender… she only got a job sweeping the streets and even then they didn’t want her… she lived in a building where they kept released prisoners… men who were sad approached her and offered her a bed.
The government tossed her out of her job… she was extraordinarily beautiful… I’m still in touch with her… I went over last… (Long pause) or was it two years ago? 1970, around then.
I once thought I saw her here on a bus in Knightsbridge… she was rather embarrassed… I don’t know whether it was true or whether I imagined it. I was standing there and a lady came and leaned over the bar… I looked at her, a filthy look, she was in tatters… and she hesitated, and she looked at me… harsh words were exchanged. She had a baby to a Russian soldier. Eventually he shot… she came into the shop… and he stood next to the door… and he shot her dead.
Then he shot himself.
He wouldn’t let anyone have her. It’s a good thing he shot himself.
I spent six months in Prague… working for the U.N. in 1968, 69, writing a book about… oh, the usual boy girl stuff… I never finished correcting it… I’ve written over it… always one way, then another… a code… I started and restarted it a million times. It’s a fantasy… I saw it as an escape… somewhere nicer… a place you can keep in your mind if you’re in prison. I need to sort out where that place is for me now. I kept it for such a long time and just last week my sister tore it up.
The people here keep changing the story… they move the furniture making it less and smaller… putting up panels. The small table where I write the daily reports… it’s gone.
I think a lot of my words are… are all going… tearing in bits. Just last week my sister put them in the bin.
I’ve lost myself…
I went for a couple of nights but now it seems like forever. I had a friend at the UN… she said that there were places that were so poor that they couldn’t even buy soap, Yardley’s… she wanted to buy a Christmas present for Helen… a gift the she could enjoy using… a bar of soap wrapped in Christmas packaging… I gave her what soap I had. When I came back to London I bought some soap and took it over and she was thrilled. They used to make the soap from rendered animal fat, which smells bad and isn’t so nice as a gift. There was great joy that I’d given her three bars of soap. It’s funny, I get fed up with soap for Christmas… so that’s soap. So that’s… soap…
Is that what we were talking about? There’s something about soap that still needs saying… a man came out of the dark and asked if I needed a guide… a helping hand… an old fatherly gesture… and in his hand he had a bar of soap… and it remembered me something I wanted to say.
I’m really not sure what I’m talking about. You should start, “This is Radio Prague… English language section”… then I’ll say my lines.
Frances is in her room. Unlike the majority of other residents Frances’s furniture faces away from the door. Her desk and chair face the window through which she can see a busy little park. Frances has recently told a nurse that she can see monkeys, parrots and other zoo animals in the trees outside and on her windowsill. When questioned by the nurse Frances says she knows they are not real.
This room is my poem. The people here keep changing my room. My sister tore out the pages… making it less… putting up panels… making the room smaller… I was furious. People keep their secrets behind the walls. They come in the night to stage it so it looks real but it’s not real. Every night there’s less. The small table… I wrote it, and now the word has gone behind the wall. When I have this trouble… this… words… this new innovation… I don’t know how long it will go on… I was a nervous wreck… The Italians and the Moroccans at the UN (there is an Italian and a Moroccan carer on duty on the unit)… “Watch out! You’re going to fall”… that’s what they say… I broke two legs and an arm… they put the idea in my mind… The idea makes it happen… I fell in this room… lost the words… R, E, U, P… I must have good bones… no repercussions… some pain… my arm… I don’t fall as much now… I fell… an up… (Long pause) How do you pronounce it? R, S, S … My sister is dance… she dances into the party… I was alright until I was six years old… I could move my arms and legs, it’s true! My old mother… I took myself to a psychiatrist… I walked into the room and she took one look at me and said, “I know your mother. Get away from your mother or you’ll have no life”… I became more introverted… very shy… a long period of shyness. I lost my voice… my mother fell in love with someone else… she used to… she… oh, I’ve forgotten… my father threatened to take my younger sister… she backed down… families floating apart… you have no funds if your family don’t support you… my mother cut me off… by the time I paid the rent and bought cheap clothes… clothes suitable for a dance… I had nothing but bread and milk. You lose yourself a lot… is it old times again? I can’t figure it out. I had a temporary job… temporary jobs were always busy business… Lance’s Tea Rooms… Marks and Spencer’s… I got called for an interview… I had language and… happy about that… and I had tea… but I didn’t get the job. I need a job. I’m looking for temporary work. Something in arts publicity. I considered opening a newsagent. I edited publicity for the Hilton magazine in Cyprus… working at the hotel… stuck on a desert island where they’re cruel to cats… cruelty to cats… despicable… the cats taught me how to scavenge… I took them some food… the kittens… and the mother… she spat in their face three times… three times! They didn’t expect it… they had to learn to fend for themselves… I welcomed them in and gave them food and shelter… bread and milk… I put bricks on the floor so they could climb up onto my window ledge… it’s unexpected for a mother to spit in your face.
I used to live in Naples… it was terrible… here I have the best view in the world, I can see Tesco’s. There are no Tesco’s in Naples.
David Clegg received his M.A. in sculpture from Chelsea School of Art in the UK. He maintains parallel careers in the arts and dementia care. He is the founder and director of The Trebus Project and the author of Ancient Mysteries and Tell Mrs Mill her husband is still dead.
Susan M. Schultz has lived in Hawai`i since 1990. Her book, Dementia Blog (Singing Horse, 2008), chronicles her mother’s decline into Alzheimer’s over a six month period in 2006-2007. She completed the dementia project on Tinfish Editor’s Blog, ending it with her mother’s death in June, 2011. Her other books include the recent Memory Cards: 2010-2011 Series, also from Singing Horse, and A Poetics of Impasse in Modern and Contemporary American Poetry (University of Alabama Press, 2005). She has edited Tinfish Press since 1995.
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