As the boat slips free of her mooring, so all the trouble and tribulations of the last few weeks fall away. I feel my stomach muscles unclench and my shoulders visibly lower as I exhale. My eyes rest on the beautiful soothing green of the fields, the twinkling of the sunlight through the soft rustling trees and life slows to three miles an hour – bliss! Nothing else comes close to the sense of relaxation and peace. Pootling along the canal waving at strangers on the bank who all look pleased at the acknowledgement. Nods of recognition and snatched conversations with fellow boaters and the most important decision of the day is where to moor for the night. Time is suspended, frenetic energy dissipates into the depths of the water and all is right with the world.
People may assume that narrow boating is boring but they should think again. It is hard to believe how much variety there is to be had aboard. Firstly, where to sit? You can sit up at the back (aft) steering or gossiping to the steerer. Secondly, you can sit 70 feet away on the front deck (stern) reading a book, the newspaper, doing the crossword, writing or simply drinking in the sights (the alcohol comes later) of the countryside, the wild life and the Gongoozlers. Alternatively, you can sit inside doing all those things or play board games, listen to the radio as stunning scenery slips past the window.
Our boat is one of the longest and is fitted with all sorts of mod cons, flushing lavatories, showers, a bath, central heating, a master bedroom, a fitted kitchen with microwave and fridge and finally a living/dining area with a wood burning stove.
Depending on the size of your boat the number of companions can vary on ours there is usually at least five or six. There is plenty of choice regarding who you can sit with to while away the hours chatting or in a companionable silence. However, do not get too comfortable or complacent as at any moment a ‘crises’ can occur sparking a flurry of activity. A novice boater stuck on the bank, a bridge to be navigated or a lock hoves into view. Crew members suddenly start scrabbling for boat hooks, windlasses, others jump off to ascertain the situation. At locks a number of people tend to gather even if they are not boaters. They are usually eager to help, turning lock key opening or closing gates. Then almost just as suddenly calm returns until the next incident.
Lunch – on the move or at a canal side pub is the next dilemma. A mostly unspoken rota people emerges to step up to whatever role is needed . There are a number of crucial tasks that are required, such as shopping, rubbish removal, fuel and water tanks filled, toilets pumped, in order for the smooth running of the boat. These all get completed with a minimum of fuss like a well oiled machine. There are maps and information to help make this possible, and this can sometimes dictate routes and timings in order for the boat to be in the right place at the right time.
Sometimes there are villages, towns or cities with various attractions for example, castles, museums or stately homes. We keep sailing as long as the light makes it possible. We moor up, cook, eat on board or go to the pub. At some point there will be board games, such as, Sequence, Parcheese, cards or Pass the Biscuit.
If only we had known this time was going to be very different.
I’m sweating still feeling clammy. My stomach is cramping and I groan aloud in pain. In the dead of night I think perhaps I am going to die. I think about the infections that you can get in hospital maybe I have caught something. Suddenly, I am wet. I push the bell for the nurse. I cry as I tell her my bed is wet, I have wet myself. She cleans me up and I lay back again. In the morning I press for the nurse to bring a bedpan but it is too late I am wet again. This happens several times I seem to have no control over my bladder which constantly feels full. The usual morning questions regarding bowel movements are asked. I can’t lie but I say I am not the sort of person who goes every day. I pretend to eat. Pushing the food round the plate. I hide stuff under cartons from yogurts and scrunched up napkins. I’m sure it won’t fool them for long. I sip tea but even that is making me feel sick. I don’t wash I barely sit up. I make myself sit up try to engage in conversation with my fellows.
There is a young Indian girl training to be a doctor. She has very long straight black hair and a sweet face. Her husband is a business man. She has a two year old son. When she fell he said, “Come on mummy stand up. You can do it!” I smile at so typical an example of a child’s view on life.
Another lady is in the next bed. I’ll call her Kathy she had a stroke some time ago and on top of this now has broken her leg. She has short bleached blonde hair and is unable to communicate so only yes/no questions. She has got a wicked sense of humour and likes lots of smiles. Her son is a priest. He is tall, solidly built. He speaks clearly, firmly and quietly with authority. She has lots of visitors from the church. The main phrase they use is, “That’s good, good, yes.” The son’s assistant is their niece. She is bubbly, lovely curly dark hair, plump motherly figure. She speaks to all of us checking we are doing okay. Cathy, the patient, got terribly concerned about me knowing I was unwell. Her eyes and body language are extremely express and she makes her feelings clear. She indicates that she wants her doctor to speak to me. I explain how I’m feeling and he thinks that I am constipated. I am constantly surprised at the triggers all around me. The feeling of being enclosed in small dark places, lying flat on my back unable to move being in pain. High curtains surrounding a small space, the side bars of the bed are like a cot. It is frightening even for an adult, how much more for a child. People walk toward you, to do things to you without warning. It’s not abuse but it feels like it.
I’m about as anally retentive as it is possible to be without it being a clinical issue. Maybe it is has a lot to do with control. I wonder what I was like when I was potty training. It may have been the only thing I can control. Also may explain my very high fight or flight response. I can’t flight so I am always ready to fight. Hence the grabbing reflex in response to needles. Maybe that is why the constipation is so bad “Codeine can make you constipated,” the doctor explains, “I’ll see you get some Senna. That should help.”
Another patient remembers having toys taken away from her when she was in hospital for scarlet fever. I too recall a time in hospital as a child having a toy taken from me. They promise I will have it back but I never saw it again. Her story resonates deeply with me. She started a tradition of giving her grandchildren £10 pocket money for holiday spending she still carries on despite them being in their twenties with such a large number of grandchildren that amounts to a lot of money.
I have a theory that you can tell what job people do in a hospital by the sound of their footsteps. Nurses have light steady footsteps. Cleaners’ and porters’ are slow and plodding, while doctors’ are crisp, confident and assured.
I’m not sleeping well, worried about Cathy. She has gone downhill since they changed her plaster. She rallies a little in the afternoon but she wakes about 4.00 am choking. We call the nurses it seems they hadn’t put her back on the oxygen.
Imagine, if you will, being on the brink the very edge of obtaining complete freedom. You are about to embark on a full-on, nothing can stop you, fully supported and actively encouraged by your loving family, adventure of a lifetime when it is suddenly snatched from your grasp. You are in pain, you are torn from your family and abandoned in a cold, clinically white, hard isolated environment. You cannot see what is going on, you hear strange disembodied voices and you are moved about without any warning. You are 9 months old and you have contracted poliomyelitis a serious contagious illness.
Do any of you know a baby of that age? What are they able to do?
What do you think they know and are aware of?
If you pinch them do they feel pain? Do they miss their mum when she isn’t there? Do they laugh and smile? The answer I think is yes to all of the above.
She was just about to start walking, she was pulling herself up and holding on to the settee or coffee table. Then she started to exhibit signs of the flu, every time her mum picked her up she would cry and she couldn’t bear to have her legs touched. Her mum gives a very moving account of looking at her little girl through window not being able to touch, cuddle or comfort her. How must the little girl have felt?
Poliomyelitis is a disease that attacks the nervous system and stops messages from the brain reaching the muscles. Some children were left quadriplegic (meaning all four limbs affected), some like her paraplegic (two limbs), some children were left with a slight limp, weakness of hand or foot, some children went into a machine called an Iron Lung because their breathing was affected and a number of children died. Some famous people have had polio for example Mary Berry
Her mum continues the story about how she was allowed to take her little girl home on Christmas Eve, she was tiny, dressed all in white with little callipers and boots which had been made for her by the hospital because she was so young. Mum said she looked like the fairy on top of the Christmas tree.
She does not remember much about the actual experience of being in hospital but it lurks in the depths of her memory. Exhibiting itself in various ways: She cannot bear sensory deprivation, so she’s nosy, needing to know what is going on, dosen’t like headphones or blindfolds and has a needle phobia.
It never occurred to her that she was different. She went to what was then called a ‘special’ school for physically handicapped and children came from all over so it was difficult to meet up with friends outside school. She was picked up by a school bus and used to sit up the front with the driver (probably totally against Health & Safety regulations these days) and chatter away to him. She even had a little brass bell which she rang when whoever was being picked up was seated. As she got older and began to make friends nearer home however, she began to realise that she was different. One day she saw her friend and waved at her she was very upset when the girl just turned away as if she hadn’t seen her. Then she hated that bus and would duck down until out of her neighbourhood so that no one I knew would see her.
There were a few things that happened that made her wonder about her future prospects. Once encountering her headmaster in the corridor he asked “What do you want to be when you grow up?”
‘A psychiatrist’ she promptly replied.
Have you ever thought of being a medical secretary?”
Of course, she didn’t really know what a psychiatrist was but she knew it was to do with mental health once she appreciated that you needed to be a medical doctor she realised that what she wanted to be was a psychologist.
Another instance was when she was in Year 8 one of the teachers put Playschool on the television. She was incensed she was better than that rubbish. She sneaked off with a friend to play table tennis. One day she came home crying and her mum enquired “What’s wrong?”
“I don’t want to be a teabag packer.” she sobbed.
“What makes you think that you will be?”
“That’s what everyone who leaves my school does.”
The curriculum at ‘special’ school was pretty restricted the only exams she would have been able to take were Certificate of Secondary Education and those only in English, Maths possibly Art.
You have probably never heard of an actor called Clint Eastwood but he played a maverick cop who didn’t follow the rules. He would prompt a criminal to do something like run or try to shoot him by saying, ‘Come on make my day.’ and then he would legitimately be able to shoot him. That was her attitude as she used to walk down the street if she saw people staring, which they often did, she would stare back and ask “What’s the matter never seen a girl before? You want a picture.” There were two old ladies on the bus who looked her up and down. “Oh it’s such a shame. They shouldn’t be let out on their own.”
She rounded on them, “My mum and Dad love me very much and if they thought I was not able to be out on my own they wouldn’t let me.”
If anyone offered her a seat she would not take it. She was going to be on equal terms with able bodied people no matter what.
I am suddenly awake “Help me, help me.” a woman is screaming.
“Take it off, take it off”
“You are a wicked, wicked person”
“I’m telling . . . .”
Quiet reassuring voices murmur back, trying to calmly patiently, reiterate the actual situation.
“Get this off my neck, you are killing me. I mean this, I really really mean this. I’m not playing any more.” the shouting continues.
“Don’t touch me.” she screeches.
“I’m trying to stop you from hurting yourself.” comes the forbearing reply.
“I don’t want you to hold me. This isn’t the hotel. Take me to the hotel.”
“We’ll take you there later.” is the unhurried response.
At last morning arrives we all complain about lack of sleep. I have managed to make friends with the people in my bay. We chat about everything illnesses, husbands, water works and bowel movements, nothing is taboo. My neighbour chats to the nurse as she starts the observations checks. “That was a lively evening. Was there a full moon last night?”
“Every night is a full moon on this ward.” is the quick response.
One of my fellow inmates is relentlessly negative, like a female version of Victor Meldrew, every comment met with hostility coming, I suspect, from fear and lack of control. After breakfast the moaning begins. “I’m so uncomfortable. I didn’t sleep at all.” this is a constant refrain. “You ask for something and they never bring it.” The way she interacts with people reminds me of my Dad’s joke about the farmer who needed to borrow his neighbours tractor. His wife eventually persuades him to go and ask. All the way there he grumbles to himeself about how unhelpful and unsupportive his neighbour is. He knocks loudly and as the neighbour opens the door the farmer tells him “Ah, keep your old tractor!”
“Do you want me to bring you the commode?” a HCA enquires.
“No I don’t dear.” this is said with such forcefulness as if it is the most outrageous suggestion ever. It is not what she says but the way that it is said. “This bed is so uncomfortable I feel like I’m sitting in a dip.” she complains. The nurses do their best to make her comfy the bed has ridges it is an air mattress designed to prevent bed sores.
“I want to go home. Mind you I don’t know what I shall do when I get home.”
“I asked for a commode today and they keep bringing me a bed pan.”
It only happened once but it is if it has happened several times. Constant repetition I act as translator she is not really listen to what is said. She is also a little hard of hearing exacerbating the situation. She has a sharply featured, pointed, angular face. Straw coloured hair in a bob. “They say they will only keep you waiting a minute but then no one comes.” she groans. “Still feel like I’m weeing.” She tells me off when I remind her to stop checking, warn her about infections and so on, “Have you ever slept on one of these beds?” The same refrains over and over. There is a vulnerability that seeps out occasionally which makes her endearing.
We have just finished dinner and her first comment is “Pushed it down.”
“At least it is something to do.” I say and we laugh.
“I’m being monitored for amount of water I’m drinking.” she tells me, “First I’m told I’m not drinking enough. Now I’m drinking too much!” Then she is off again.
“I shan’t sleep. I expect I won’t.”
An extremely camp, confident efficient purposeful person. Stockily built and balding, walks with a military bearing and has quite a sense of humour. He has been here all morning conducting a mock inspection. When he comes over and stands at the end of my bed talking to Tina my visitor I think he is surveying patient and visitor experiences of the hospital. It is quite a sureal moment I feel like I have entered the twilight zone as they chat like old friends, smiling and nodding at me. Turns out he used to work with Tina. He tells us he is visiting his wife at the hospital she has had a partial hip replacement. “But weren’t you here earlier?” I ask in some confusion. “ That’s right I am also on the Board of Governors for the hospital and was doing a pre-inspection inspection.”
Over the next few days I go down into a very dark place. My stomach cramps, I feel hot, cold and clammy. I cannot sleep. I refuse to eat or get washed. I do not even want a cup of tea.
It is not mine to elect
Have no right to direct.
Did not want to neglect
Live a life of regret.
There’s no time to reflect
Or pay you respect.
Unable to reject
It seems so suspect.
Must learn to accept
Be more circumspect.
Some cards from the deck
Will have a defect
Can’t all be perfect.
Its far from ideal
This love that I feel.
Learn to conceal
That is the deal.
A kiss to seal.
Hope time will heal
Even the keel
Keep it all real.
Stuffed full of grief.
Doused with relief.
Drizzled with loss
Like a seaweed moss.
Want you to know
Don’t want you to go.
But I just can’t bear
The pain sautéing there.
Add a tablespoon of denial
Infused with tear-fall.
Don’t want to neglect
Live a life of regret.
Baking the anger
Basting it longer.
A soupçon of acceptance
Blended with reluctance.
Thus hard to eat.
No way to cheat
As you take your last breath
That thief called death.
Every little girl needs a hero
And every little girl’s hero
Should be her dad.
To be enveloped in the strong arms
Of all that care,
Surrounded by the passion
Of all that love,
Experience that trust, that safety,
It’s something every child should know.
Life is tough,
But the foundation of strength and compassion
Sown in those early years
Helping us through the trials, alleviating the fears.
I get into a sort of routine. I take my drugs four times a day. They consist of two paracetamol and one codeine. I am beginning to get the hang of the bed pan. I hate it who knew how difficult it is. I struggle but after a few disasters, mainly caused by my waiting until I am absolutely desperate, I am improving. After days of not washing, not even thinking about washing, a HCA gives me a bed bath. Another first I am ravaged with fear and embarrassment but she is gentle and thorough. I do feel better after I manage to sit up I chatter to my neighbours in the hope of keeping my mind off what the rest of my family will be doing and the fact that I will not be there with them. Every one is very supportive I get various text messages saying how well everything has gone and how brave my family have been. I cry a little now and again. I look forward to the fact that my husband, mum and sister will come to see me the next day.
Time ebbs and flows at various rates, interminably slow at times and at others it speeds like a bullet. Its amazing how quickly one adapts to a new routine, its become acceptable to discuss bedpans, bowels and BMs on a daily basis. When eating becomes something to do rather than a means of sustenance. I am struggling with the food, at first it was tasty but I am getting to the point where I can not face it. I push the food round the plate I take tiny bites and hide bits under napkins designed to look as if they have been casually tossed aside. I know that if I do not eat it will raise a red flag the last thing I need is there to be any investigations. Everyday they ask, “Have you opened your bowels today?” Everyday I answer, “No but I’m not someone who goes every day.” My stomach feels really bad and I start peeing all the time and almost without warning. My skin feels hot and clammy. I did not realise the side effects of codeine could be so severe. Constipation is terrible I do not want to sit up or speak to anyone. I refuse to be washed I feel awful. I have to wait for the doctor to prescribe laxatives.
A nurse comes toward me with an injection. “Oh no.” I say shaking my head.
“Oh yes.” she retorts. I inform her that the cannula in my arm means I do not have to have any injections as they can go through there. She patiently explains that this one does not go in the vein and is necessary to avoid deep veined thrombosis. I stoically allow her to put it in as the tears course down my cheeks.
The fear of injections never goes away. How deep do muscle memories go? The fear of the unknown, the lack of control, people can do whatever and move you wherever and whenever they want. I feel the my breath tightening and panic start to rise. I analyse the walk, the uniform of everyone as they approach to ascertain what job are the likely to do. It gradually subsides as it becomes clear they are not needle-wielders. I realise I am regressing. I have become the little girl I must have been when I was taken into isolation in hospital as a nine months old having contracted Poliomylitis. The nurse comes back the next evening “I had that yesterday.”
“.I know you have to have it again.” she counters.
“Again?” I am aghast.
“Yes I am afraid so, this one you have to have every day. You do not want DVT believe me.” she tells me.
My bottom lip trembles, my breath comes in gasps and the tears fall again as I submit to an injection administered to the back of my arm. She pinches the skin and I hardly feel it pierce but it stings like crazy after. I sniffle my way through my dinner
My friends turn up they bring a nightdress, a short dressing gown which she informs me is called a cardigown. There are also colouring books, pencils, suduko puzzles and word searches. These are not just flimsy paperbacks but lovely little books with beautiful covers. Sweets and biscuits it feels like a birthday.
A friend of ours brings Mum, Laura and my husband to visit me on Saturday I have had to ring them to let them know I have been moved. It is great to see Mum, it is the first time I have seen her since my fall. I think it is only now that they are realising just how serious my fall has been. It is hard chatting in the hospital I have asked P to bring me a wash bag. It is so nice to have my own stuff round me.
The next big thing to face is whether I will be able to go to my Dad’s funeral. I discuss it with my ‘cell mates’. I discuss it with the doctors and nurses. The weekend docotor says there is no reason why I cannot go and they will try to arrange things. I weep with gratitude. However, the Occupational Therapist (OT) reminds me about the logistics of the trip. It is a difficult decision to make. Think about the journey, two hours in the car, how would I go to the toilet the journey back and oh yes of course the pain. I reluctantly agree. I also worry that my being there might detract from the ceremony. I want it to be about everyone saying goodbye to and celebrating my wonderful, beautiful Dad’s life not running round making sure I am okay. I tell my family and they are very understanding. My friends at the hospital are also sympathetic and agree that it is the best thing. Monday is going to be a really tough day.
The lady who greets me as I am pushed into the plaster room is the nicest, most patient person possible. We make an instant connection. She has short, blonde hair in an asymetric style. She has an attractive, smiley face and reassuring manner. I feel as if I have known her forever and had we met under any other circumstances we would be friends.
I explain my fears and phobias. She offers me gas and air which will help with the pain. Even after all the drugs I have had before I left the ward, it takes ages before the gas and air kicks in. I tell her about travelling to the airport to pick up my sister, the fall and my Dad and how wonderful he was. I am sobbing uncontrollably and she hugs me tight whispering, “Shh, shh, I know, I know.” At one point my vision blurs I am seeing everything as through a smokey haze. I scream and moan with pain at every touch and movement as the old plaster is removed. Both my hands hold behind my thigh just above the knee. “I am not normally like this.” I say, “I’m a strong, intellegent woman. I’ve got a Masters in Education” I am waving the gas and air pipe in empahsis, she guides it back to my mouth.
“Keep sucking on the gas and air.” she enjoins. She decides not to put a stockingette on and uses a gauze as she begins to plaster. As she approaches the knee she prompts, “You need to move your hands.” I nod but my hands remain. “Let go of your leg.” I let go with my left hand but my right hand is glued in place. I know I am trying to move it but nothing is happening. I take my left hand across and grab my right wrist I slowly release my leg. I am crying and moaning but she carries on calmly, soothingly asking questions and chatting. She plasters my leg to the ankle and under the ball of my foot. Finally, she puts an extra layer of plaster round the top of my thigh to help with the security of the leg. “Keep the leg elevated on a pillow and ensure that your heel is kept free. Your heel is very sensitive and you do not want to get a pressure sore on it.” I begin to breath easily again. “How about a cup of tea?” A cup of tea in a real cup appears, it tastes like nectar. I sip and watch her use her wonderful bedside manner on a child offering her a choice of colour and the additon of glitter on the plaster. I feel so embarassed as this little one braves the plastering process with stoicism. Eventually, porters come to return me to the ward. I hug my angel in disguise and thank her for her patience and forebearance with my weaknesses. I am like a different person when I get back to the ward.
My leg feels safe and protected I am able to move about more easily. I interact with my bay mates. We have a laugh about life and things in general they take me under their wing. A gentleman from the hospital radio asks if we would like to have a request played later on that evening. We make our selections. Dinner comes and goes we have the radio on waiting for our requests. I relax for the first time perhaps things will not be so bad. A nurse comes in “Can I ask you ladies something?” We reply, “Of course.”
“As you know this is a male bay and we need to turn it back. So would you mind if we moved you? Just along the corridor.” We acquiesce feeling supportive and cooperative what good patients we are. What we do not realise is that we are being split up not only that but the move takes place when our requests are on the radio.