SONNET Death hangs a long way off. Must I just wait And pass my youth through to my greying days In petty pastimes and misery for ways Of life I dare not hope to live? My gait Is twisted and my speech uncouth. I hate The pity and the distance set around By those who see and dare not know, so bound By other's expectations. Am I too late To live; to study how to learn; to try And fail yet seek another way to give, To gain myself? In this exchange the dry Desert of my poverty may bloom - live In undreamed ways - and the pain of fading Hopes will disappear in life's rich trading.
Jonathan Griffith. August, 1977.
So, age 40, I wrote that sonnet on a creative writing course, in the middle of the night in floods of tears, as one has to with such nativities. It summed up my attitude to life that far. I’ve been ‘trading’ ever since!
The artist as a young man, aged 19. Took an age to get my hand to rest on my knee! And how respectable; suit, shirt and tie – knotted by Father!
At first I expect this blog will mostly be copy and paste from stuff I’ve written before, while I catch up with myself.
I was born in August 1937 so I am experienced and always learning, trying new ideas. I have cerebral palsy which means I’ve never walked without holding on to something or somebody. I started using an electric wheelchair in 1988 and now I can’t walk at all. My arms and speech are also affected. I was 5 foot tall, like my mother. So that’s my physical body. In my living – a continuing process – I am many things, as you will discover! Read on …… (People find me a good listener too.)
Intimacy between people is communication, possibly of the closest,
most personal kind, sometimes without words.
Quite a number of people are authorised by their jobs to be mildly
intimate. Medical staff of all kinds and carers, if their work is
done with sensitivity and respect, are genuinely intimate, although
if they are just doing a job, then however intimate their tasks,
intimacy will be lacking.
Amongst other activities, I’ve painted many portraits. Studying a
head and face so closely, reading its history and origins, observing
the intelligence and emotions, is deeply intimate and my subjects can
find it uncomfortable at first. But I match this intimacy with
respect, and they regain confidence.
Every normal person has a deep need for intimacy. Where does it
begin? What is its essence? Surely in the complete acceptance of a
happy young childhood; parent of child and then children of the
adults who care for them. As an adult myself, this is part of the
attraction of children. They normally accept me as I am, as I do
them, respecting them. Children who lack this fundamental gift, will
often struggle to achieve their potential.
As we each grow out of childhood, we establish our own strong
identity, of necessity growing apart towards individual adulthood. We
cautiously seek acceptance of who we are from new sources, carefully
revealing more where there is mutual attraction, feeling safe.
However, this is very rarely a smooth and easy process. A myriad
of circumstances and personal traits build fears, insecurities,
compulsions, and underneath there may be aching voids of need and
loneliness, feeling unaccepted.
Probably each one of us has painful and embarrassing memories of experimental attempts at relationships which failed. Sometimes inappropriate exposure results. Some girls become very vulnerable, seeking acceptance of their new femininity but only knowing sexual activity as the way to find it and lacking the confidence to control the situation. With a few men, this need for physical and sexual acceptance becomes pathological, needing to expose themselves.
We need acceptance of both mind and body. Knowing and accepting ourselves is a good and essential way to start to become intimate with other people. It is a back and forth process, discovering oneself a little and then, more confident, seeking to discover someone else, different or similar, accepting them, liking them or not, as they accept us. Everyone, becoming self-aware, usually becomes aware of other people having related feelings to themselves. In the right circumstances, we develop empathy and friendships.
A mirror is a great device. Your face is a window on your mind.
Study it. Understand whatever you find there and, in understanding,
love yourself. You’ll learn to ‘read’ the faces of friends and
Study yourself naked in private also, and any partner if they let
you.. There’s no need for embarrassment or fear. If genitals, breasts
or anything else such as a disfigurement, make you uncomfortable,
have a good, honest, look until they and their function, even a
dysfunction, become part of the whole amazing animal which we each
Your body is your tool with which to live, the details
fascinating, the whole thing splendid as it moves and flexes. I’m
disabled and getting old so I’m twisted and wrinkled. It makes no
difference to how I feel about myself. Catching glimpses of myself
hurrying to bed is a gentle reminder to take care of myself. This
body is all I have.
As well as portraits, (and landscapes) I also love drawing and
painting people naked. Mostly I’ve done this in art classes using
professional models, but also one or two friends have felt safe and
confident enough to pose for me. I’m deeply privileged by this
trust and mutual respect. Some people just seem to see and paint
shapes but what fascinates me are the bones, muscles, flesh and fat;
the movement, weight, and life in that person, expressed in that
body. Be it strength, pose, eagerness, or vulnerability; sometimes I
catch a trace of it in my work. It can never be a patch on reality
but it is an intimate blend of them and me on paper.
Recently there’s been a TV series ‘How to Look Good Naked’. This seemed to exploit the painfully conflicting feelings some women in particular have about being naked. It’s a sad situation. Everyone will look good if they feel good but even feeling and looking dreadful is a valid aspect of how they are and nothing to be ashamed or shy about in a situation of real intimacy and trust.
Then there’s the mock intimacy of ‘strippergrams’ and girls’
nights out with male strippers. Sexual display is met with a barrier
of laughter and embarrassment but as soon as anyone takes the
situation seriously and the barrier is broken, the fun is over, the
situation out of hand. The reality is immensely complex.
For a long time I’ve been happy to be open with people I trust.
Many years ago I shared my bungalow with a friend for a year. Small,
dynamic and lesbian, she walked with two sticks, drove a tiny
‘invalid car’ and taught in an FE college. Living together,
sharing laughter, little intimacies, we grew close.
One night she asked to sleep with me. I found her curled up,
motionless, safely wrapped in pyjamas, so I tucked myself closely
around her for a little while before going to sleep. Nothing else was
done and nothing was said so I will never know for sure what she was
seeking. It was for her to reveal, not for me to probe.
Maybe we found something of whatever it was later together. By the
Summer term I would wake her on mornings when she had an early class,
crawling naked into her room, lifting her duvet, sitting her up on
the edge of the bed and silently cuddling skin to skin for a minute
or so before crawling out again.
That was an exceptionally uncomplicated physical intimacy; no compulsions, no expectations, no performance, just briefly sharing our physical humanity. I am glad I felt honest enough to be so unconventional and get so close. It did not happen out of the blue, of course, so although slightly startled the first time I did it, and then amazed and loving it, she already knew she was safe with me and that I respected her. When she died years later of MS, part of her funeral was dedicated to my girlfriend and me.
Such a simple closeness is a long way from the complexity of
sexual intimacy. The mutual and conflicting passions, needs and urges
need caring and instinctive negotiation, balancing and forgiving,
enjoying. It is a pity that mankind can procreate violently without
intimacy. There is such poverty of character and of experience; such
a lack of real friendship.
There is much horror and disgust at the violence in society and
various media, and concern over how it is affecting the behaviour of
children and young people. Rules are invented to try to limit
exposure to damaging material but they are futile. The only real
safeguard is experience of the healthy alternative; a mature and
respectful intimacy which is appropriate and safe; an environment
where each can discover their own individuality and how to relate to
others, safely and in depth.
The same principles of honesty and respect apply across the full
range of intimacy from the complexity of physical sex to the simple
touch of my hand on your hand, the safe sharing of deep feelings
between friends by whatever means.
What richness we can share together, if only ……! And what pain and grief follows a broken or lost trust.
This is the story of my life up to November 2018, very largely based on a 50 minute presentation I gave then using a speech synthesizer.
I would like to start by reminding you what England was like 81 years ago. In 1937 we were watching Hitler take over Germany, stirring things up prior to World War 2 which began 2 years later. The NHS would not start for another 11 years. Most people had little medical care, except traditional remedies. There were no motorways, computers or satellite navigation nor TV. If you had a telephone you were in a small minority and inter-city calls were connected by young women putting jack-plugs into sockets. Telegrams delivered by boys on bicycles were the quickest way to get a message to most people. You could still buy sweets for a farthing and there were 960 farthings in £1. Banks kept all their accounts on paper. Police men had whistles to call for help. Every able-bodied man was obliged to respond, or that was the idea!
So I was born in a 3 bed semi on the outskirts of Wigan. It was a very difficult birth and a specialist had to be called but my mother didn’t notice anything wrong with me until I was 20 months, and tried to walk. I was all set for a lower middle class upbringing when the war intervened. My parents were Quakers with strong pacifist principles so Father resigned his job in Personnel in an engineering works, not wanting to be advising men about military service. He worked for a while on schemes for unemployed men until they were all conscripted into the army. He himself got unconditional exemption so we were lucky but unemployed.
Father got a job helping in a hardware shop in Birkenhead and for one week we rented a house in Rock Ferry, each night sheltering from the bombs under the stairs, Mother reading me a story by candle light. (scared) Then she got a job as housekeeper to a widow in the Lake District. We were there for a blissful year, each month Father taking a Saturday off work and cycling up to join us, leaving Liverpool at 6 after work on the Friday, arriving at 2 on the Saturday morning. (on an ordinary bicycle of course.) (She would watch his lamp coming slowly along the road beside the lake, flickering through the trees.)
While there Mother wrote a letter marvelling at my 3 year old enterprise, manipulating my little 4 wheel walking frame (intended for indoor use!) through the long grass of the orchard and up a bank to look at the horse in the field. Finding me there, she offered to help me back, but “No, I can do it.” So she watched secretly to see how I did it! Clearly I already enjoyed the challenge of a problem. And I still do!
We returned to Liverpool to share a house with another Quaker family until they moved on. When the time came for me to go to school, my parents were told I couldn’t be educated so they sent me to a small private school to prove otherwise. I went there on my tricycle. (How many children were just ‘put away’?) I remember struggling to write with a cheap steel nib, using ink from an inkwell in a hole in the desk.
Then I went to an ‘open air’ school until 11 when the first special boarding school for children with cerebral palsy opened in Croydon, Surrey, and I was sent there. The education was poor and the treatment ineffective but socially it was fun and the house and grounds were great.
The grounds round the house where we children played had wide lawns and huge trees but another part had romantic winding paths through thick bushes and enterprising me got secret permission to go there on my tricycle. I watched the birds and squirrels and found many kinds of fungi and plants
There was no sex education at all of course but nature will out and being that age we sometimes played doctors and nurses behind bushes in the Summer, exploring ourselves and each other, the natural beginnings of sexual relationships. Unfortunately I was to get no further for another 10 or even 20 years – a serious social handicap. I left after 2 years, very self-conscious and with a stammer due to the mirrors used to encourage us to be ‘normal’.
The City Education Committee wanted me to go to a special weekly boarding school but my parents didn’t like that and sent me to a tutor, taking the job of Wardens of the Quaker Meeting House to pay for it. At that time the MH was just behind the Walker Art Gallery so good for the central attractions and lots of visitors came from all over the world sailing into Liverpool, (no trans-atlantic air travel) so that too was good. On the other hand I couldn’t go and mix with local teenagers. There were plenty of them in the corporation flats across the road and I would have learned lots but in those days there was a sharp social class divide so, no way! My parents always invited visitors to Sunday lunch but never invited anyone my age.
I have some of my drawings from this time. Mother showed them to an artist she found drawing the city streets. He suggested I took the 14+ exam for the Secondary School of Art.
The Secondary School of Art was in two large terraced houses, three rooms to a floor. Two fellow pupils were appointed to carry my books and walking stick up and down the stairs between classes, while I hung onto the banisters. Breaking my right leg in the first term was nothing to make a fuss about. We did lettering, art history and composition, (as well as a bit of maths, english, etc.) and each week we had ‘Art Home Work’, being given a topic to illustrate. Here is the ‘fearful fiend’ in the Rhyme of the Ancient Mariner!
I dictated my written work to my mother, as writing was too slow. We never had any models to draw though I sometimes used one at home. One quiet afternoon I secretly drew a girl sitting on her desk but I did not get to know anyone – shy and speechless!
I left school with four ‘O levels’ and about this time we left the Meeting House, moving to a late Victorian house near Sefton Park.
Father had his own Hardware shop now in the City Centre and he got me a trial job with a commercial art studio.
So after pedaling out of the city centre and back for school, now I went in the other direction to work. Going home, children often ran alongside. “Hey, Mista,” they’d shout, “dats a tree wheela.” I could only agree!
At the studio I could do the work, here’s an example, but not fast enough, so I started working as cashier in Father’s shop from 12 to 5, sitting in a glass cubicle, receiving payment, giving change from a sponge pad, so that I could pick up the coins instantly, and also I kept an eye on things, like shop-lifting. I was there for 14 years.
At first, after we moved, I spent a lot of my spare time in the park, watching the ducks and the people with equal interest, utterly alone. I had big struggles over sex – I did not even know how it worked at 17, then I think Mother dropped a clue and of course, then I needed to know what girls had between their legs. Mother tried to find me a book but failed. It was agony in every sense!
There was no one I felt able to ask. Normally I would have been mixing socially with youngsters my own age and would have gathered some kind of knowledge and experience. I did have two younger sisters aged 8 and 11. I completely respected their different stage of development but I tried to get what I needed from them, without their being aware, with very limited success. They have little memory of what I got up to so it must have been all pretty normal to them, which is a relief.
So I struggled on, lonely, repressed, fascinated and uncomfortable. And unhappy. For a little while I remember self-harming, nothing serious but it was a very grim place to be.
What could I do? I decided to go to evening classes at the College of Art to practice life drawing and portrait painting. At least I’d have a neutral reason for studying people. I forget how I enrolled and got started. Probably Mother helped at the enrolment. She wanted me to do landscapes but I insisted. I carried everything in a big bag over my shoulder and staggered in with my walking stick after securing my tricycle to a rail.
Soon I was good at both.
Next year I got motorised transport in the form of a single seater electric car. It was supplied by the Ministry of Pensions with a modern rounded fibre-glass body but the important thing was I had much more energy. I could go places and do things I never thought of before. And any place I could safely park myself, I could sit and draw and paint! The possibilities seemed infinite!
The top speed was 10 mph and the distance up to 40 miles if there were no hills and the road smooth. Going to evening classes was much easier. I went through the Mersey Tunnel and was told not to do it again. But of course they let me go back through to go home! After that they stipulated a minimum speed limit!
But the most significant thing was I could hum gently down to the weekly meetings of the Young Quakers and mix with people my age and with my interests. When I got there I needed lots of help as there were stairs everywhere and no real hand rails, and all the floors were slippery, and the car park was locked, but help appeared when I sounded my horn.
The group regularly combined with a similar one in Manchester to go on weekends away, staying in remote Meeting Houses (dating from 17th century when most people lived in villages) We slept on the floor, all in one room. Everyone was very discrete. After 3 years I had saved enough to buy a mini-van, and fit vacuum powered hand controls. You had to double declutch when changing down a gear! Now I could travel the country and give people lifts when we went away. During the day they would walk the lanes and footpaths and climb the hills, while I would find somewhere to draw and paint. They were good times.
Some of the young women were terrifyingly beautiful, so I painted them! Ever enterprizing, that was an effective way to hide my fears and become good friends but underneath I remained frozen. I linked arms to walk with them but could not touch them in any other way.
At 23 I did fall in love with a graceful 17 year old, Isobel, writing a note asking if we could be friends, and she said yes. Mother noticed the sparkle in my eye and had a serious talk to me, saying just possibly, one day, I might get married, but really, I shouldn’t fall in love – very discouraging! I did appreciate I was immature but that was no reason to not fall in love.
Isobel was just as inhibited as I was, in her own way. I’d pick her up from her house in Formby and go and park in the woods and we’d talk, me usually writing my share. She showed me where she had cut at her wrist, and I touched it gently, the only time I was physically affectionate
She went off to University and we wrote. We had several holidays together on a friend’s farm on the edge of Exmoor, walking miles linking arms and talking, and briefly I became fluent! When she was away, every six months or so my feelings got too much for me, and I’d write an agonised love-letter, and she’d say it was one sided, and I’d calm myself and apologise.
(She does not know where her portrait is but she has got this painting by me to contemplate. It will do instead!)
Meanwhile I was working in the shop and painting in my spare time, selling quite a lot of work. People asked me to paint their wives and daughters. One poor man had to apologise after asking for a portrait because his wife could not face someone disabled like me painting her. What was on her mind, I wonder?
I painted a variety of subjects but particularly enjoyed the city streets and buildings. At first I used biro to draw the detail then I got bolder and used felt pen.
But after 10 years, still living at home, I was in a rut getting nowhere. I was becoming explosive in a pacifist sort of way. I hated my mother and her limited ideas and prejudices for a whole day, then set about doing something about the situation. I had to become fully independent and leave home.
I didn’t earn enough to live on, so I applied for Supplementary Benefit. Why had I not done it before? It was not part of the middle class culture. There were no disability benefits unless you had a war pension. Middle class people just looked after each other. Indeed everyone did, so far as they were able.
Getting the benefit was not easy. They agreed that I ought to have it, but had no way to assess my painting income. Once again I didn’t fit the regulations. It took 3 years and the help of a Quaker accountant to agree a 6 monthly assessment period. Getting the benefit meant they would take into account any rent I was paying, so I was off!
I wasn’t idle during the three years of arguing. There are many social workers, and people like counsellors and psychologists in Quakers and I needed that kind of help. I asked to visit those who I knew a little and got to know them, sharing together, our difficulties. I’m a very good listener so it wasn’t one sided. I got to know more people in my own right, instead of through my parents.
When the Supplementary Benefit came through, the first thing I did was buy a small canteen trolley. With that, I could walk and carry stuff, including my largest paintings, and it fitted in the back of my van. It stood in my studio for months attracting mother’s disapproval, (she said it was unnecessary for me to move) while I looked for somewhere to live.
After a few false starts I found the perfect place, a ground floor bedsitter flat with a garage.
It was not quite finished so while I was waiting I asked one or two young friends to help me make multipurpose furniture to make good use of the small space. When I got in the flat, it all fitted and functioned perfectly! There was space for a full sized cooker but I only needed a Baby Belling so, all on my own, I made a strong little table to fit the space so that the top of the Belling was flush with the work tops and there was space for a rubbish bin underneath. I was proud of that little table!
I was also working on an idea for a friend who was much more affected by cerebral palsy and needed a special keyboard for an electric typewriter to be able to communicate much at all. To work out the best arrangement of letters on this keyboard I analysed various pieces of writing to get an idea of how frequently letter sequences occurred. Then I wrote a method of finding the best arrangement and asked a university friend to check it. He came back rather stunned, saying it was like a computer program. This rang a bell with Mother. She had heard on the radio of a new course, training people who had disabilities to write computer programs.
I went to Leatherhead for an assessment and passed but I was more handicapped than they expected so they said I had to get the offer of a job before they would take me.
Back home, I got out my typewriter and wrote to local companies which were large enough to have a computer. United Biscuits interviewed me and gave me a different test which I completed with just one error, so a job was mine.
The eight weeks training was almost second nature to me and I was named top student of the year! (Yes, I grew a little beard after my shaver was stolen!)
As soon as I was settled into my little flat, faithful Isobel asked to come and stay, saying she had always dreamt that one day I would live independently. What could I do? This dear, lovely woman who I’d longed for helplessly for 10 years was coming to spend a night with me in my one small room! There was no hiding place.
Of course I had no way to be clear with myself about the mess of fear I was, never mind tell Isobel. I just knew I had a blockage which I hid very well. I could not admit I was terrified of being affectionate.
She came, and we put a curtain across the room, although she said it wasn’t necessary. Passing her, tucked in her makeshift bed, she smiled up at me, completely safe and open. For the tiniest split second I sensed her availability, and then passed on in inner turmoil. Otherwise everything was ‘normal’.
It was, of course, still a one-sided infatuation but looking back 47 years, I still wonder if…. But not for long!
The sensible woman got married the next year. But we are still friends.
A new begining!
My failure to connect with Isobel seems worse in retrospect than it did at the time. I was busy settling into my first really challenging job in United Biscuits in a large open plan office on the third floor. It was in the days of punched cards. We programmers wrote instructions on coding sheets which went down to the punch room where rows of women sat at card punches, converting our instructions into trays of cards. They also punched up the incoming orders. Woe betide anyone who dropped a tray full! We then checked the cards for errors. We had one card punch of our own to make corrections. When everything seemed correct so far, we sent the cards down to the computer to see if they worked. Back and forth the cards went, until, success!.
Quite soon I became expert at solving what had gone wrong, pouring through stacks of paper looking for clues. My salary went up and up I also read the instruction manuals and discovered useful things which no one knew about. I wrote a program which saved time and soon every other program was using it. My new colleagues offered new possibilities. I organised a visit to the theatre. I even took a girl to see a play, but got no further! Other men said I was onto a good thing with her, which was a new experience! Amongst other things, I went on a writing course at the Quaker college in Birmingham and wrote this poem.
A HUG. “May I give you a hug?” Arms parting, tentative.
Here’s rich communion. Feeling your weight, Strength, Softness, Warmth; Smelling your scent
My life in touch with yours, And your life sensing mine; Feeling tears and laughter, Fear and relaxation, Close safety, comforting, caring; Acceptance of our joint humanity.
Prerogative of lovers? This treasure is for all who care. Beyond words are meanings half forgotten; Past loneliness, and mother’s arms, and womb; They touch on our togetherness.
We are together, you and I, and him and her; Frail mortals with the strength of all eternity; Rooted deeply in such simple things; Do not forget them.
Reaching through the fear that severs us; Embracing; parting; remembering, The me that I am knowing you, and him and her; And being known.
There are no words; Only the feeling of how good it is.
Jonathan Griffith. September, 1981.
The Spastics Society got wind of me and invited me to help run the local ’62 Club, a self-help group for people with disabilities who wanted to be independent. There I met Sue, who was different. Small and vulnerable, she had a reputation for using sex to get friendship and help. She had a young son, fathered by the manager of a care home she had been in. She was in a mess but she was a tryer, hoping to get her son out of foster care and to look after him in her new flat.
I treated Sue with complete respect, fairness, and as my equal, as I would anyone. And I listened to her fragmented way of talking, trying to put it together to make sense. It clearly made sense to her and she spoke of important matters. I learned not to ask questions, which clearly did not make sense to her, but to ask for more information instead.
I took her to my flat and she liked how I lived. I didn’t ask her for sex as other men often had but we were comfortable naked or clothed and I explored touching her affectionately, rather like how I used to touch my sisters when they were young. Her son came to live with her and I would go for breakfast and then take him to school on the way to work. Sadly, it did not last long and we wept together when he went back into foster care. I often took Sue to see him when she felt able.
With a good salary, I could afford to buy a place of my own. A semi-detached bungalow in St. Helens was our choice, but not to share, as Sue wanted to stay independent.
Meanwhile, the organiser of the ’62 Club organised a camping holiday in Sidmouth, and pointedly put Sue and me in a tent together some way from the other segregated tents. We did our best but I was still in brother and sister mode so no erection! Back home, we went to the library and after signing a special register, I was allowed to borrow a book on sexual problems. Interesting but no help. However, quite soon, Sue found ways to help me and that was good!
Feeling so safe with me, strange anger and violence would sometimes come from her, usually in the evening, attacking me silently and without reason, trying to make me cry out in pain, stopping as soon as she succeeded. Gradually, horrors emerged from her past.
A poem about our tough relationship, has a place here
My Friend I have a friend; fear and anger etched within; Hammered; torn; crushed; a child near cancelled out; Fleeing; crying; seeking safe enfolding; In terror asking; expecting only hurt, annihilation yet again; Longing to grow in freedom and acceptance; To find her hidden gentleness and love; to heal the scars.
Love she grasps at; shuns; sucks dry and throws away. There is no hope. Love she torments, testing. Love she rips apart, hating and mocking; Sobbing, sodden with guilt, raging helplessly; Demanding more than love can give, weeping at the hurt that spills To tarnish all her world. There must be hope to bear such pain.
Sharing her sorrow; enduring anger; wrestling; hurting one another; crying together; We found love. Laughing, growing, exploring strange rare moments and inner impulses; Finding limits of endurance and acceptance; Looking, watching, being and letting be: slow healing.
Still she clings in fear and loneliness, Seeking answers that I cannot give. But growing will release her bond to me And spread her gentleness and love in wider ripples; give her peace. Her pain will turn to wisdom. Our pain gave me her love. I have a friend.
Jonathan Griffith. August, 1980.
Sue gradually emerged from her grim place and we started on a much more positive routine. She came to stay each weekend and we would go out driving each Saturday, visiting our various friends and relations. Sometimes we stayed overnight. We went on holiday.
As soon as personal computers could do useful things, I bought one and a printer, being much better than a typewriter. Seeing me write blank verse, Sue immediately recognised the form of writing as ideal for the way her brain worked. No complicated sentences. Just short, expressive phrases. Her self-expression became very much easier. Her writing needed punctuation and spelling but it was often direct and striking. I set up procedures to collect and order her work and soon her output outstripped the time I could spare for editing.
YOU AND ME You don’t want to be me.
I got to go into you for help. Yet I am not you; just there, always, gone from me, always waiting for you, not me.
I want to go back to me yet I lost me somewhere. I cannot get back me until you come, share with me what I am; the me of thee making three in you.
Nibbling corners, we will make whole people of us, as we won’t get cross at a wall between us in you. Sue Norris, 1994.
AND YET I understand nothing; and yet I observed me something. Sue Norris, 1994.
All this enabling and sharing made a huge difference to Sue. Friends said she was blossoming. This lasted a many years. Then I began to get pain in my right hip. An X-ray showed nothing, but I do jump when a shutter clicks! So I was prescribed an anti-inflammatory which I took very cautiously but even so, soon my bowel began to bleed.
Unfortunately, this coincided with a marvellous offer of a year of live-in help from a friend’s teenage daughter, just out of school. She was vegetarian and particularly keen on Marmite which started a yeast infection in my hypersensitive gut. (I liked it too) We knew nothing of this at the time but it lead to years of ulcerative colitis, months off work, short spells in hospital, and early retirement. I would have been offered a colostomy but I would not have been able to manage a bag.
All this meant I couldn’t support Sue, helping her do what she wanted. By this time we were sharing a large bungalow which was big enough to split into two. With a little work we had two of everything and in theory Sue could have her own life but I would be just through a door if she needed support.
The problem was her difficulties were not recognised. She was labelled badly behaved and lazy. We got our GP to refer her to one psychiatrist after another getting nowhere. When she finally got a diagnosis of high functioning autism from a psychiatrist in Birmingham, St. Helens refused to accept it! They would only accept the opinion of a local psychiatrist, who would only go as far as saying she had an organic personality disorder. No one knew how to support someone with autism anyway. Even now, she struggles, no one understanding the help she needs to work with her so she achieves what she wants.
Returning to sharing our bungalow, Sue had to rely on my Home Helps to do her housework and on me for shopping and cooking. She got extremely frustrated and angry and I often had to grab my coat and escape with her shouting after me. I made two Official Complaints that she was not being properly supported to no avail. She did not even have a Care Plan. She developed kleptomania, filling five large rooms up to the ceiling with STUFF, leaving a narrow passageway in one to a cushion on the floor in front of the TV. It was both a fire hazard and a haven for mice.
But I stuck with her for years, hoping her needs would be recognised. Why should she have a worse time than I did?
Meanwhile, I had been making some progress on my health. After trying many alternative therapies, I found a McTimony chiropractor (link above) who adjusted all my joints, got rid of the pain in my hip, and generally straightened me out. She had a colleague who was a Medical Herbalist. (https://www.nimh.org.uk/ )She identified the yeast infection, advised me on diet, and made up a healing potion to be taken three times a day. It took many months of trial and adjustment and gradually my bowel settled down.
But Sue was beyond my help and needed a fresh start. As I passed the age of 65, I evicted poor Sue into the care of St. Helens. They found her a granny-flat annex on the Wirral. It could have been worse. Friends filled 12 large skips with rubbish and moved the rest of her belongings to a house nearby which I had bought and renovated for her. That did not work out either.
Freed from the constant presence of Sue, I got a new lease of life. My energy and health improved rapidly. I decided to volunteer and started to attend public meetings on subjects which interested me. There was a call for members of the public to monitor the various organisations running the NHS. I was allocated to the local ambulance service. Each successive government changed the rules and I eventually became a member of the board of our Healthwatch, looking at both health and welfare provision. I had a reputation for asking sharp questions and having creative ideas.
About the same time Direct Payments were introduced as a way of giving people who needed help because of disabilities, more control and responsibility. At first I employed an agency but the planning and accounting was limiting. So I went to the Jobcentre to see about employing someone myself. I was almost welcomed with open arms. I think I ticked all the ‘Best Jobcentre’ boxes! They helped me advertise and interview and the Direct Payments team set up my account with the tax office. Complicated, yes, but it was all my responsibility.
I’ve had lovely people working for me. Only one dud who tried to rob me. I took one through two pregnancies. To another I was like an older brother, sharing many intimacies. With one I spent two weeks helping to interview twenty care agencies bidding for a block contract. We worked together so smoothly, we were thought to be related. I gained a huge amount and gave all I could.
A Valentine – of sorts!
You help me
Bathe and dress
You touch me
And lack of fear,
That I feel whole
Thank you! Jonathan February 2013
Throughout I tried to keep my independence so that if anything went wrong, (it did several times) I could manage alone. Two of my helpers were keen on fitness and happily lifted me in and out of the bath without any noticeable effort, but otherwise, getting myself in and out was the most difficult physical thing I did. In spite of exercising, my legs did not get enough use. So getting myself out became an enormous effort, mostly using my right arm.
I think it was that which gradually caused the bones in my neck to give way, trapping nerves, particularly affecting my right arm. When I returned from a weekend away with it hanging limp and painful I was rushed to hospital in case it was a stroke. It wasn’t, fortunately, but I did not have enough help to stay at home.
It was a shock to the system to go into a nursing home. Would I ever get out? Morphine was prescribed for when the pain got too bad. Even there I was ‘Sterling Moss’ because I had my electric wheelchair which I could drive with my left arm. Everyone else who could not walk had to be pushed. In a way though, it was good and timely. I needed a challenge to my thinking and routine.
There were soon plans to get me onto CHC. This stands for Continuing Health Care and allows people with long-term or terminal medical conditions to receive care at home. I was judged to be terminal. However, I had other ideas.
IDEA 1 Every night I made sure my pillow was padded to keep my head straight, reasoning that, as the damage had tipped my head onto my left shoulder, keeping it straight might allow my neck and nerves to recover. The improvement was imperceptible, but over the years, as you can see, it’s working!
So the nursing home was pretty good at Personalised Care, if you took the initiative, seeing I got the food I needed and letting me stay up past midnight if I wished, listening to Radio 4 to keep my mind engaged. But oh, the misery and unhappiness I saw and heard, even so.
The CHC was agreed after three months and I returned home to four visits a day from a care agency plus an additional one on Sunday to go to Quaker Meeting for Worship. I got up reasonably early but got put to bed at eight thirty, which was a bore. Marie, the senior care worker, made sure I had access to everything I needed and that I could make use of. I found a friend to take me shopping. With my sisters’ help I let my refurbished Annex to a young family. So far, so good.
But I kept getting better, recovering more movement in my right arm and neck, and needing less pain relief and cream around my bum etc. I looked up the conditions qualifying me for CHC and clearly I was growing out of them. What to do?
My problem was that if I had no health care needs, and the Council would not fund anything until I had used most of the capital in my bungalow, I would have to pay for all my care. I didn’t have the income to pay for the package I had, never mind that I wanted something better.
Many older people are caught in this situation. The standard answer is to either mortgage your property, or give the Council a charge on it, so that when you die, the Council can recover the money it had spent on your care. I didn’t fancy either option. I might well outlast the money in my bungalow and end my days in a nursing home anyway. Then I realised, although I couldn’t afford to pay for care, I could give someone accommodation and financial support in exchange for them giving me the care I needed. It was worth exploring.
A wife might have been ideal but there was no prospect of that! Maybe a student could fit, or how about a writer embarking on an epic, or an artist needing to be free from the attention of the DWP.? Even someone who just loved looking after somebody, although actually I was needing less and less looking after.
To make the task even easier, I installed a ceiling track hoist, straight from my bed, across the hallway, and into the bathroom where it would lower me onto a new wash and dry toilet.
To cap it all, it has a turntable to a branch track to the bath. All this was quite expensive but I got a grant from a charity. (Note new bath with mirrors all round it plus reduced inhibitions!)
I discussed these ideas with my sisters and with Marie, who had become a family friend.
Then Marie asked if I could accept a married couple? I thought it would be a squash but if they thought it would work, perhaps.
After further thought, Marie suggested herself and husband, Chris, who was quite seriously ill and in and out of hospital, so also needed long term care. It was certainly worth a try.
Marie would need time off so I prepared an advertisement to put up in the local college, but a lovely carer was found via Jobmatch.
While this was going on, I had a routine appointment at the hospital and, as expected, the consultant discharged me. This triggered a fresh assessment of my CHC, and indeed, I was no longer entitled.
So I share my bungalow with Marie and her husband to get the help I need, and everyone wins. Marie and Chris have free housing, all on one level, instead of a three storey house, so someone else can have that, and my facilities get more use. I cost the Council nothing and the NHS virtually nothing. Marie has free time and does not have to get a job. I’m getting to do much more of the things I enjoy. But it is a squash!
But many older people live in houses which are too large for them, either owned or rented, and they need company and maybe some help and care. With proper safeguards, why not pair them with single people needing accommodation? If they wished they could have a new lease of life, based in the environment they know and love. No loneliness and isolation, no horrors in a care or nursing home.
There is a government sponsored scheme called Homeshare which goes part-way towards this but it prohibits all personal care. Personally, I think we should be bolder and more honest. We all have bodily functions we are sensitive about and the need of help with them will come to nearly everyone. To give and receive intimate care in a situation of mutual respect is wonderful.
And a wash and dry toilet costs about the same as two weeks in a nursing home so please put in good equipment.
A young friend, Becky, died recently. For congenital reasons her life was always fragile but she was funny, sensitive, wise, loving and hard-working. Visiting her in Intensive Care, neither of us able to say anything, what struck me was how little we knew of each other, looking at each other with eyes full of questions. Sharing all we can, while we can, is so valuable. It makes us truly human.
There is, of course, a limit to how much we each can share and how widely. This evening I have done more sharing, perhaps, than ever I have before to so many, about myself. I am glad and grateful.
I have one thing to ask:-
If you know, or think you know, of the whereabouts of any of the paintings I have sold, please send me a photo of it for my records.
I would love to know where they all are!
My thanks to everyone who has helped me produce and present this talk.
And indeed to the infinite number who have contributed to my life!