Putting people in boxes

We all tend to put people in boxes, even if we try hard not to: that person is English, that person is deaf, and so on. As we get to know them, we find that they don’t fit neatly into any one category and we gradually adapt to seeing them as they really are.

Large bureaucracies like the NHS find it harder to think outside the box.

I have to have regular blood tests. While I was not allowed to walk because of my broken leg, there was no question of me being able to attend the surgery, so arrangements were made for a nurse to come to me.

Now I am on my feet it is a different story. The rule is unbreakable: if you can step outside your front door, you are not housebound and you do not qualify for a home visit. I tried explaining to the community nursing team that whilst that was true, it was one thing to ask a taxi driver to guide me because I am blind and quite another to ask them to assist a visually-impaired person who is using a Zimmer frame.

The answer was still no.

In the end, I had to ask a friend to accompany me to the surgery.

In example number two, I was trying to book hospital transport. For my first X-ray I was allowed transport because I couldn’t walk. There was no ambiguity there. However, when I rang back recently to arrange transport to hospital for my second X-ray, there was a definite reluctance on the other end of the phone.

“Do you go out at all?”

“I go to church.”

“How do you get there?”

“A friend gives me a lift but then she is going there anyway. It’s quite a different thing to ask her to take me to the hospital.”

“Can’t anyone go with you?”

I was asked to see if I could find someone to accompany me. I was told, that, if this really wasn’t possible, I could come back to them but there was no guarantee that they could help me.

In the end, I did manage to find a friend who could take me, and I’m very grateful for their help.

Now, it probably sounds as though I’m complaining but, actually, I’m not. I do understand that the NHS has limited resources and has to draw up rules to ensure that those resources are used for the benefit of those who need them most. I also understand that if they started making exceptions it would end in over-stretched resources and headaches all round for those in charge.

There is an issue here, though, about what happens when you don’t slot into a convenient category or meet a predefined bureaucratic criterion – when, in other words, you don’t quite “fit into the box.”

When I mentioned this to the nurse as she took my blood, she said it was a problem many of her patients had. I’m sure it is. There are lots of us out here with complex needs.

I hope I’m getting across that I’m not indulging in special pleading for the visually-impaired. We’re not the only ones affected by these issues. I do want to make a point about visual impairment, though, when it’s combined with another physical disability. I don’t think people always realise how much this complicates life.

Even when I am in my own home, where – at least in theory! – I know where I’m going, I still bash into the walls when I have to use a Zimmer frame because I can’t accurately judge how big the frame is. I don’t always walk smoothly through gaps in the furniture for the same reason. I’m not a brilliant Zimmer frame driver and, when I do go out, I have to get my friends to grab hold of the frame to steer me, rather in the manner they used to do when helping me with supermarket trolleys back when I still went out to a supermarket!

Imagine me trying to explain to a taxi driver, for whom English may not be their first language, exactly what help I need! They are mostly very helpful, but I think that would be asking a bit too much.

I don’t know what the answer is and, as with so much in life, there probably isn’t a perfect solution. I do wonder, though, whether a little education for health service professionals about the complications thrown up by having more than one disability might not be a very good idea.

Autumn

I have just been walking round my garden with my trusty Zimmer frame, getting a little exercise and soaking up the sunshine.

I love these autumn days when the sun is bright and there is even still a little warmth to be had but there is that wonderful sharp tang in the air.

I associate this time of year with fresh beginnings: starting a new school year, starting college, starting my first job, and now, of course, recommencing activities that I had to suspend for the summer.

It’s great!

There are two aspects of this time of year that I don’t like, though.

The first is the drawing in of the days. I hate putting on the lights and drawing the curtains at six o’clock in the evening. Interestingly, some of my friends who can’t see at all feel the same so it isn’t just to do with actually seeing the approaching darkness outside. There must be something more fundamental to do with feeling the days are growing shorter and we are living more enclosed lives. This may take on an even deeper significance now that we are living with coronavirus and the spectre of local lockdowns.

Once the winter has truly arrived, I can start to enjoy being cosy indoors, but right now I am still lamenting the end of summer.

The other thing I don’t like about this time of year is the coming of the cold. I have poor circulation and arthritis so the chilly air really doesn’t agree with me. Some days I can actually feel myself slowing down. More problematic still is having cold hands. Cold fingers lose their sensitivity. I find it more difficult to feel things, and particularly to read braille. It doesn’t help that my office faces north and can be quite chilly, even on otherwise warmish days.

And the truth is, I have a little of Scrooge in me.

We have had some relatively warm Octobers in recent years and I have been able to put off starting the central heating until we were nearly in November. This has become something of a challenge to myself. How long can I hold out?

Meanwhile, I put on my fingerless gloves in the office. Sometimes I find I just have to put the electric fire on but I let the room warm up and then switch it off again. I tell myself to put more layers on. Eventually, of course, the elements will win.

Just between you and me (please keep it a secret!), I have already put the central heating on a couple of times this year. It was just to warm the house for a short while in the mornings and evenings you understand. Not cheating at all…

I probably won’t win the “Can you keep the central heating off until November?” challenge this year. The forecast isn’t great but I’m going to hang on for as long as I can!

Devon boats, trains and cars (not to mention cathedrals and Jurassic cream teas!)

I promised last week to tell you some more about the holiday my friend Mary and I took in Exmouth recently.

The day after our abortive ice-cream sundae hunt, we took our second boat trip of the week. This voyage was along the so-called Jurassic Coast and included a Devon cream tea, which was absolutely delicious. Whereas on Sunday’s river cruise the water had done no more than lap gently at the side of the boat, this time there was a definite swell and there was no mistaking that we were out to sea. The boat bobbed up and down and the waves slapped vigorously at the sides of the vessel. This was all very satisfactory from my point of view. I don’t want a calm mill pond, I want a sea that is alive and kicking so that I can get the full experience – and on this occasion I certainly did!

Another fun if slightly more sedate trip was riding on the land-train around the town. Again, we got a commentary as we went along and this helped us get a good idea of where everything was.

Our explorations of south Devon by land and sea were extended still further when, half-way through our holiday, a college friend of mine who lives in the area came over and took us out in her car for a pub lunch and a drive along the coast.

On Friday we decided to venture into Exeter. This meant travelling on the train. We hadn’t booked assistance in advance but the station staff at Exmouth and Exeter Central were wonderful. They put wheelchair ramps in place and made sure we got safely on and off the train.

I have been to Exeter Cathedral before but it repays visiting more than once. It has a lot of history attached to it and is a magnificent building. One of the volunteers on duty offered us a guided tour, which we were pleased to accept. She was extremely knowledgeable and helpful. She knew the best route for the wheelchair, found a braille guide and showed us a tactile floor plan of the cathedral. This was really useful. I know what the layout is likely to be up to a point but when you can’t see it can be quite hard to hold the image of such a large building in your mind’s eye and work out which bits link up and where. They also had an architect’s model of the outside of the building which gave me a different perspective. Again, drawing a picture in of such a large structure just in your head can be very difficult.

Late summer was already becoming autumn and the weather started to turn colder and wetter towards the end of our stay. We had chosen a good week for our holiday but now it was time to go home.

We came back refreshed and feeling we had been very fortunate.

So now it’s back to work. No peace for the wicked, as my P.E. teacher used to say!

Post-Op

In last week’s blog, I told you about the operation I had to repair a fractured femur.

The 24 hours after the operation were not good.

Even in normal times, I take a lot of strong painkillers, so when I have any trauma, I need still more. The medics, however, see how much I am on and are then reluctant to give me any more. That is what happened this time too.

I didn’t sleep at all the night after the op and spent the next day with an increased heart rate and temperature. They kept doing ECGs and giving me paracetamol. I kept telling them I was in pain and exhausted, not ill, and that if they would just give me more pain relief I would be okay.

Eventually, in the evening, one of the nurses cottoned on that if I normally took such a high dose, the little pain relief they were giving me wasn’t even “touching the sides.” At last, they increased my meds and gave them to me more often.

Finally, blissfully, I fell asleep.

I woke at half-past-four in the morning, not expecting to go back to sleep but not caring as at least I had slept, though in the end I did drift off again.

As my temperature was still raised, they put damp cloths on my forehead and, at some point, someone conceived the idea of inflating a plastic glove, filling it with cold water and placing it on my head. In my drug-fuelled stupor I put my hand up to my head and thought, “Oh, they’ve put an octopus on my head.”

Eventually my brain kicked in and I thought, “Of course they haven’t put an octopus on my head!”

I wasn’t in the least concerned either way, however, which just shows how relaxed I was by this point.

When I was more alert, the doctors came and told me how the operation had gone. The good news was that my hip replacement was still intact so they had just had to fix the femur, which they had done with plates.

I had hoped to be up and walking soon after the op but, no. The physios explained that I couldn’t put any weight on my broken leg for a full six weeks. And when they said no weight, they really meant it. All I am allowed to do is get up on one leg, hang onto my Zimmer frame, sit on a wheeled commode and be taken where I need to go, and then perform the manoeuvre in reverse. I can literally only go from chair to commode, from commode to chair, or from commode to bed.

I had also hoped to be able to haul myself upstairs on my bottom when I got home but the physios let me try this in hospital and I couldn’t manage it. My leg was too painful and stiff and, in any case, I wouldn’t have been able to stand up when I got to the top.

I have now been sent home with what they refer to as a “care package.” My bed has been moved downstairs to the living room and a carer comes in to get me washed and dressed in the morning and to put me to bed in the evening.

Mary, my amazing friend and PA, is living with me for the moment and doing literally everything else. We are working again, as I can be wheeled into my office where I am now writing this blog.

I am due to return to hospital in mid-August so that my leg can be X-rayed. I fervently pray I will be allowed to walk again!

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Judith Furse is planning to take a break from blogging during August but is looking forward to bringing you new posts in September.

Trauma & Fracture

In last week’s blog, I explained how I tripped over a box of braille documents lying in my hall and ended up in hospital with a fractured femur, awaiting surgery. At that stage I didn’t know whether I had also broken my hip.

So there I was, lying in the Accident and Emergency Department with a broken leg, unable to move and in some pain. Mary, my PA, had kept me company and it was round about this point that she reminded me that I was still wearing my apron. Somehow, I managed to wriggle out of it.

They tried to block the nerve in my leg to help with the pain.

“I’m just going to cut your leg with a scalpel,” the doctor said.

“Okay,” I said. And then, after a moment’s reflection, “Why am I saying it’s okay? It’s not okay!”

My objections were overruled, but in the event the nerve block did not stop the pain. Nor did the morphine.

While I was waiting there, they tested me for coronavirus and MRSA. The COVID test is horrible. They have to swab the back of your throat and they had to use a tongue depressor because I could not override the gagging reflex.

Some time that evening they moved me to the Trauma and Fracture Ward. There they put my leg in traction, which did help a bit with the pain because it lined the bones up. One of the nurses said, “I don’t want to gross you out, but you can actually see the bones moving.”

Well, I couldn’t, as I’m severely visually impaired even at the best of times, so I suppose that that was all right!

Anyway, that’s how my weekend in traction began. The hospital had just started to allow visitors back after lockdown, but only on a strictly controlled basis. Each patient was allowed one visitor for one hour per day. They had to book in advance and they had to wear a mask. Mary organised a rota, so I got to see someone every day, which was brilliant.

The nurses and healthcare assistants were amazing. They were very kind and looked after me extremely well, quickly adapting to my needs as  a visually-impaired person. They introduced themselves, told me what they were doing, and helped me with my food. For instance, I couldn’t manage soup in a bowl in my awkward position, so they put it in a cup. They offered to cut food up for me and told me where everything was on the tray.

The doctors also always introduced themselves and explained what was going to happen.

In many ways, this was one of my better hospital experiences for standards of care. I have, in fact, just become a hospital governor, so I felt a bit like the healthcare equivalent of a secret shopper.

When it came to the operation on Monday, I chose to have an epidural rather than a general anaesthetic as the last time I had had a general anaesthetic I was very sick… But let’s draw a veil over that!

I was told that the doctor who was going to administer the epidural was the best they had. She was a lively Italian lady who amused me by asking one of the doctors, “Who is that new doctor, you know the scruffy one?”

I’m sure there are no scruffy doctors in Italian hospitals!

They gave me a sedative before the operation so that may have shaped my experience of waking up more than any reality. Be that as it may, my impression when I awoke after surgery was that my head was wrapped in a blanket.

I felt like a hibernating hedgehog.

I surmised that it was to stop patients waking and seeing things which might upset them. For obvious practical reasons, that was never going to be a problem for me.

I was just glad to be awake and on the other side of the operation.

To be continued…

Taking a quick trip

I fell over a couple of Fridays ago.

“So what?” I hear you say.

Let me tell you. As they used to say on the BBC children’s radio programme Listen with Mother back in the 1960s, “Are you sitting comfortably? Then I’ll begin.”

–0-0–

When I take in lodgers, I always tell them that I have two rules: they have to put things back where they belong, especially in the kitchen, and I ask them not to leave things on the floor where I might fall over them.

It’s a shame I don’t always follow my own rules.

Braille books and documents are sent through the post in large hard plastic boxes secured with webbing. When the postman delivers boxes of braille books for me to proofread, I often ask him to leave them in the hall so that I can put them away in the office later.

(I expect you can see where I’m going with this.)

My good friend and personal assistant Mary and I were washing up after lunch one Friday when the doorbell rang. I surmised that it was the grocery delivery from Tesco that I was expecting and started for the door. My knee had been painful for a while and I was walking especially slowly. There was no need for me to hurry as Tesco weren’t going anywhere else with my order but, nevertheless, I felt I should speed up. So I did.

Next thing I know I am hurtling over the boxes in the hall.

I landed wedged in behind the front door. The Tesco lady was very concerned. She called through the door that she could ring for an ambulance or carry me upstairs. Then she heard Mary’s voice and was concerned to know who was with me. Perhaps she thought I was being attacked.

I assured her that all was well and Mary took the Tesco bags in through a crack in the door. She couldn’t open it any wider because I was in the way.

I thought I had pulled a muscle and optimistically said that I would be all right in a little while. Mary put cushions under my head and laid a blanket over me and even got me some ice packs to slap on my leg. Remembering how much work there was to be done in the office, I suggested we made a start and lay on the floor calling out which files needed to be printed off and where to find them.

After a while I realized that I wasn’t getting noticeably better and wasn’t going to be able to stand up without help. I asked for the phone and dialled the emergency services on 999. I told them I didn’t need an ambulance, just a paramedic to get me on my feet and then I would be fine.

They sent an ambulance anyway and, you’ve guessed it, I still couldn’t get on my feet.

The paramedics whisked me off to our local hospital and I was duly X-rayed. This in itself was a challenge. I really couldn’t move my leg at all so the radiographer had to take what she called “an unorthodox approach” to get the picture she wanted.

Looking at the X-ray results, the doctor said I had well and truly fractured my femur (thigh bone). He was also concerned that I might have damaged my hip replacement and sent me back for another X-ray. I did remonstrate a little.

“I can’t have fractured it. That’s ridiculous. I only fell over a box!”

Sadly my denials didn’t alter the reality of the situation. I needed an operation and the doctor said they wouldn’t know for sure whether my hip was damaged until they had got me in surgery. I would need a specialist hip surgeon and so would have to wait until Monday before the operation could go ahead.

To be continued…

Greek temples, oracles & tombs

In my last two blog posts, I’ve been sharing some memories of a holiday my friends and I took in Greece years ago, just after we graduated.

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Someone told us that there was an ancient temple dedicated to Artemis not far from the hotel where we were staying so, one day, we set off to find it. After a while, my friends spied it in the distance.

Then we seemed to enter some kind of space-time vortex.

Whichever path we took, we never got any closer. It was quite uncanny and, Greece being a country steeped in legend, we began to feel some supernatural force was at work. At one point we even started to walk across the fields but this was messy and the going was hard so we retreated back to the path.

I can’t even remember how we got there but, eventually, Artemis stopped playing with us and we arrived. It was like stepping back in time. The temple was amazingly well preserved and very quiet, not being on the usual tourist trail.

We also went on some organised trips, one being to Delphi. We went by road, which was certainly memorable…

Now, I’m going to say something about driving in Greece. I don’t mean to offend anyone. I loved both my holidays there – this one on the mainland and a later one on Corfu – but the Greek attitude to driving was certainly different from what I had been used to in the UK. All the drivers, whether cabbies, bus drivers or ordinary commuters, adorned their vehicles with crosses and religious icons. We soon got the impression, though, that their display of piety was in lieu of safe driving practices.

They trusted in God and ignored red lights.

At one point our bus stopped suddenly on a clifftop road and we all nearly fell out of our seats. When we were told that the many shrines along the cliff roads were in memory of people who had died in traffic accidents, we were hardly surprised but certainly more than a little concerned!

The shrine at Delphi, where the famous oracle used to prophesy, was up a steep hill. Despite my arthritis, I climbed the many, many steps but, by the time I had reached the top, I was definitely struggling. A nice young man in our party carried me down.

Another indication of how small I was then! No young man in his right mind would offer to carry me down a steep flight of steps these days, especially not in such heat.

My memory of whether I was allowed to touch buildings and artefacts is a bit blurry now, but I don’t remember anyone telling me not to. My general recollection is that everyone at the historic sites was friendly and helpful.

We struck out on our own on one occasion, taking the bus into Athens and going to watch the changing of the guard outside the parliament building. At least, we thought that was what was happening. My friend Kris described it to me as being more like a dance than a military manoeuvre.

I wonder if that says something about the gracefulness or perhaps just the liveliness and exuberance of the Greeks.

It was a great day. We browsed the market stalls and I still have the jewellery I bought. I also purchased a lovely embroidered blouse which I wore for many years as a reminder of a wonderful holiday. I’ve grown out of it now, but the memories still remain.

It’s still all Greek

I was telling you about the holiday my friends and I had years ago in Greece, just after we graduated.

Our hotel room had a balcony and we sometimes sat out there in the evening when we felt we needed a change from sitting in the bar. We always left the balcony door open to cool the room, but there were a lot of insects around and one night when we came back into our room, we found a large, leggy creature on the ceiling over my bed. I didn’t want it to fall on my head during the night so my friends hunted about for something to kill it with.

It was a high ceiling. Nothing would reach.

In the end they stood on my bed holding the table from the balcony between them and used it as  a giant fly swatter. I stood bravely out of the way.

We had a lovely chambermaid who not only made our beds each day but also folded my nightdress into pretty flower shapes for me to find.

I will never forget the day my friend Kris tried asking her to spray the room with fly-spray. She had no English and we had no Greek. Apart, that is, from the only phrase I recalled from school, which was “He hippe,” which means “Oh horse.”

This wasn’t very suitable for our needs so instead Kris tried a combination of words and actions. She made a buzzing sound, followed by a “psst” sound accompanied by a mime of pressing down a spray, followed by a clap of the hands. In other words: fly, spray, dead.

It worked!

Our chambermaid understood and started spraying our room vigorously each day.

While on the subject of the language: we noticed the word “catinos” by the lift. I may not have spelt this correctly. We speculated that it might mean there was a cat in the lift but presumably it has a more sensible meaning. (Editor’s note: maybe the sign read καντίνας, which means “canteen”?)

It’s all Greek to me

It’s summer here in England and raining hard. As the water pours incessantly down, I thought I would reminisce, once again, about sun-drenched holidays of the past…

When we finished our degree, my friends and I thought we deserved a break so we went to a travel agent to see if there were any last-minute cheap holidays in Greece. Lo and behold, there were, so, off we went.

We set off from Gatwick Airport at some ridiculous hour of the morning. In fact it was so ridiculous, we didn’t even go to bed the night before but sat up talking, packing, washing our hair and doing all the things you do when you go on holiday. The only thing I recall about the flight is breaking two plastic knives on something with pastry on it. Plastic knives, are, in my view, pointless pieces of cutlery.

Safely landed at our destination, we were met at the airport by a tour company rep and driven away in a minibus to start our Greek odyssey.

We had, quite by accident, hit pay dirt.

The accommodation was comfortable and the beach amazing. We were on the Aegean coast and our hotel was in a small bay that seemed to be frequented mainly by the three of us, apart from at weekends, when the locals took over. That was fine by us. We weren’t greedy.

The sand was soft and golden and the sea always calm. It was also fairly shallow, so you could easily sit in it and it was like sitting in a warm bath. You could swim if you went out a little further but, even then, it wasn’t very deep. Silver fish swam about and it couldn’t have been more idyllic. There was even a nearby taverna where we could purchase cool lager.

We mostly ate in the hotel. The food was delicious. The meat was always tender and we had a good variety of vegetables, mostly squashes and chips.

I don’t think there is anything particularly Greek about chips. When I went to Corfu some years later, the guide told us that chips were common on the island and were a legacy of British rule. I suspect they served them at our hotel to keep the Brits happy.

In those days I was very slim and, being very short as well, the impression was of a very small person. When the waiter serving our table had been round everybody else, he would return and give me whatever was left in the dish. He must have thought I needed feeding up.

Oh for those days when I could eat anything and everything and still fit into size 10 jeans!

The one item they could not produce to our satisfaction was tea. They used warm milk and it was disgusting. I stuck to coffee which was thick black, strong and delicious.

Hearing

I have just been listening to a blackbird in my garden. I don’t think I have heard one there before. Is it the lockdown which allows me to hear this one?

I have heard several people say that they are more aware of birdsong since the lockdown. There is less traffic noise, fewer planes and, for many of us, more time to pay attention to the world around us. It has made me think about the whole business of listening and hearing.

Every visually-impaired person will be asked at some point in their life, “Do you find that your other senses are sharpened to compensate for your lack of sight?”

I find this interesting. Does the question arise from some inbuilt desire that there should be some kind of natural justice or karma in the world that compensates people for what they lack in life?

If you do feel the universe should readjust matters so that there is some kind of cosmic fair-play, I’m afraid I’m going to disappoint you.

Certainly I know people with little or no sight who have brilliant hearing, but I also know plenty who don’t, myself included. I also know sighted people with great hearing.

Another commonly held belief is that blind people are all musical. Sorry, again: not true! Obviously many are, but so then are many sighted people.

Despite all that, I do think something interesting is going on in relation to visually impaired people and hearing. I don’t think that we necessarily have more acute hearing, but it may be that we concentrate more.

I have written before about the problems of watching television with my parents before the days of audio-description. They would be so busy trying to work out who the actors were that they would often miss great chunks of dialogue. I would end up explaining the plot to them when the programme finished! The reason I could do this was that I had to concentrate on what was being said and any sound effects which I could identify.

Concentration also plays a large part in mobility if you can’t see. You have to think about where the steps are, how far it is to the end of such-and-such a wall, where potential obstacles might be, and so on. You don’t magically acquire super powers when you lose your sight, you just learn to put your brain to work to help you fill in the gaps.

Now it is true that, as a child, I lost all the sight in my right eye without anyone noticing. The hospital, who should have been checking, said my left eye must have taken over and compensated for this loss. The fact remains, though, that I did miss things. I found I couldn’t always read what was written on the blackboard but, at the age of six, it didn’t occur to me that this was because I couldn’t see. I thought I was being stupid and kept quiet about it.

Just as many people with hearing-loss learn to lip-read so, out of necessity, when you lose your eyesight, you have to learn tricks for getting round the problems life throws at you. You end up developing certain skills, but you don’t automatically acquire bat-like hearing (or, indeed, the ability to hang upside down from the ceiling, which is a pity!). Sadly, I think my hearing is actually pretty mediocre, and I can’t sing in tune to save my life.

I hope I haven’t just shattered all your illusions.

Just in case I have depressed you, let me lighten the mood.

I mentioned bats just now and have to confess that I have a particularly soft spot for these nocturnal flying mammals. It all started when I fell in love with Count Dracula in the person of Louis Jourdan in a 1977 BBC adaptation of Bram Stoker’s novel and that led to a love of bats more generally.

Bats of all shapes and sizes and made of many materials now adorn my house. One of my lodgers thought this was part of an ironic take on my disability. I was amused by the suggestion and decided not to disabuse him!