Dying: or Learning to Live? 1st 3chapters

1. Life before dying

 

My life totally changed the day I was told that I had only one year to live. That was sixteen years ago: sixteen years of progressively worsening multiple disability. But the happiest sixteen years of my life. Before this, however, I should describe my life before dying.

 

I was born, an only child, during the war. Despite close bombs repeatedly blowing out windows and an incendiary in the bedroom, whenever air-raids ended, I would demand “More noise! I want more noise!” – a sentiment not widely shared. (Grown-ups can be hard to understand.) This was probably my first lesson in not taking the serious too seriously. My only actual wartime memories, however, are my Mickey Mouse gas mask – the rubbery smell put me off Disney for life – and joyfully stamping into a war-related puddle, which horrifyingly turned out to be waist-deep. This may be what led me towards pacifism. War, I learnt, is unpredictable, uncomfortable, dirty, dangerous and wet.

     

  PIC         2/1       Me, aged one.

When I was seven, my father retired from the army, bought a derelict smallholding and started a market garden – his lifelong dream. Living on a farm, I learnt how to make, repair and improvise things. Money is always short on farms, so resourcefulness is essential. Nor are shops close, so self-reliance is a way of life. From pigs, I learnt the value of logic. Big gaps in fences, like gates, they’re clearly meant to go through – but that is the sausage route to heaven. Tiny gaps, they’re obviously not meant to go through – but these lead to kitchens and dustbins – heaven on earth.

Also at seven, I was sent to boarding school. Of that school, I have nothing but good memories – obviously the bad ones are too painful to access. Life for me now consisted of two unbridgable halves: school and home. Home life was happy. But school....

At thirteen I went to another boarding school. This I didn’t enjoy. Reinforced by the view that “beating was good for character-development”, a culture of sadism ruled amongst the cane-wielding prefects. First-year boys were assigned to them as virtual slaves, called “fags”. This taught me to be cautious about how I describe my past.

One day a week, we dressed up as soldiers, complete with mirror-polished boots. Being a tiny weed, I looked ridiculous in uniform, but did enjoy playing with real guns – with which, one boy, finding live ammunition, nearly blew his friend’s foot off. Also we learnt how to blow-up bridges – a skill useful for blowing-up schools. Although not judged prefect material, a typing error promoted me to corporal. I mentally vowed, however, never to give an order – neither in school, toy-army, nor later life. This was probably the foundation for my career as a consensus-based architect.

From school, I learnt important lessons: Bottle up pain. Separate feeling, thinking and what you do. (All good for a career as a soldier.) Sever body from soul. (What soldiers should do to their enemies.) I also learnt how to love a table – in Latin. This took two years: one to decline love (ammo – also used for shooting friends’ feet) and one for table (mensa – something which I later discovered women have). This was my first lesson in love.

All my post-school life, I’ve been trying to unlearn these lessons – with some success: I can now look at a table without the faintest quiver of desire.

Most of what I learnt at school was either irrelevant or out-off-date. Latin, I learned 1500 years too late. (Had I known that, perhaps antique tables might have improved my love life.) The empire wasn’t; it was now the commonwealth. (Nor was it really that; the only wealth it owned in common was the queen – not easily liquefiable into cash.) I did, however, learn French. The first year, we studied être – to be. The following year, however, as preparation for life, we abandoned deep philosophy in favour of materialism: avoir – to have. I also learnt some useful phrases. The first – so presumably the most important – were: “Bonjour Madame. Quelle age avez vous?” I never found these effective chat-up lines.

       “Beating never did me any harm, so it’ll be good for you!”

 

At eighteen, going to architecture school was like release from prison. From now on, any rule – even if I secretly agreed with it – had to be broken on principle. Expect for the mandatory sex (easier to want than to get), drugs (unappealing as I didn’t smoke) and rock-and-roll (already going out of fashion), whatever was in fashion, I had to do the opposite. (I had learnt this from pigs.) Anyway, I already knew I would die young, an unrecognized genius, emaciated and impoverished. In the event – which still hasn’t happened – only this last adjective proved right.

I didn’t, in fact, spend my days in college. Romantically wanting to be an ‘artist’, with beard and sandals, I started evening sculpture classes. I soon found that as all the ‘proper’ students spent all day in the pub, the tutors were happy if I came by day. Architecture I now did only at night. After three years I got my certificate but, being arrogantly anarchistic, anti-establishment and anti-paper, I never bothered to collect it. (Later, I wanted it, but the college had changed its name and forgotten about me – how humiliating for an unrecognized genius!)

At twenty, I hitch-hiked to Greece and Turkey. Keen to practice my language skills, I asked a German driver: “Soll Ich meinen Gepäck im Hintern stecken?” he looked a little taken aback. Only later did I discover this meant: “Shall I shove my luggage in your behind?” Sleeping out, on my own, in urban-edge waste-ground felt scary, but the only real risks were some of my drivers. These provided an early lesson in trusting in God. Through trying hard to be agnostic, whom else could I trust? It would hardly be wise to trust their driving skills!

Surprisingly, I found countries differed most in frontier-regions – where they were nearest each other – but least in capital-city centres – their hearts. Should this have been a lesson for life? Something about hearts despite differences? Certainly, I experienced generosity and warmth unheard of in Britain. I was given lifts by both the Greek and Turkish army – almost at war with each other. Hitching outside a Turkish army base (the only traffic: two trucks per hour), a sentry brought me a chair to sit on. German and Yugoslav policemen stopped vehicles to get me rides.  I was housed and fed by both an SS paratrooper and a French Resistance member (separately, thank goodness). This was an early lesson in humanity overriding even the most powerful generalizations. Since then, I’ve never been able to categorize. This makes filling in forms hard – should I tick all boxes, or none?

I then went to work in a big office and got so bored that I swore never to work in an office again. I left to enroll as a ‘proper’ sculpture student. This diploma I did collect, but being artistically white embossed on white, it didn’t make impressive photocopies to apply for jobs with.

After art school, and still not dead, I made sculpture and taught in a London architecture school. Here, I found that architects were more concerned with buildings’ appearance than how they are to be in. Could something be missing? This led to concern for buildings as environment, then to how they impact environment – obvious, but in those days, revolutionary.

Attending Emerson College, I leant how underlying currents shape the world. I also learnt the values of equanimity, patience, dispassionate objectivity, flexibility, appreciation, persistence and compassion. I still find these – especially the first seven ones – hard to practice.

My wife and I then moved back to Wales to build a house. I now discovered how little practical construction I had learnt at architecture school. Indeed, what little I did know, I had learnt on the farm. As an eco-purist, I refused to use machinery, so making hard work inestimably harder. Blending into the landscape with its grass roof, and low-energy with its wind-generator, it wasn’t an everyday sort of house, but neighbours liked it and asked me to design extensions, even houses, for them.  

     Avoiding the rat-race

 

I soon began to get a reputation as a ‘green’ architect. (Green, in most senses of the word, but not facial colour.) Before I realized it, I had an architectural practice. (Little a because I wasn’t a registered Architect.) A friend suggested I apply for registration under a hitherto unused clause. All that was needed was for a committee of at least fifteen board members to approve my application with no more than one dissenting. Fourteen came and unanimously approved – but without a fifteenth to disapprove, I couldn’t be accepted! It then took over a year to get a larger committee together. Of thirty, forty, fifty (or whatever) surely two wouldn’t approve, but fortunately none did. So now I am legal! And with my own office! So much for swearing I would never work in one again! This taught me to give up swearing.

While building this house, we lived in a 9¢ x 5¢ chicken hut wired down against take-off in gales. We were sustained by the warmth of neighbours. One family, in particular, was unstintingly generous despite their poverty. There was no road to their farm; only a stream, doubling as tractor track. To get there meant walking across two fields and a footbridge over the river. Their house was damp, dark, bitterly cold. The one frugal stove – owned, along with any food within reach, by a vicious tom-cat (one of a series named after the great dictators: this one was Stalin) – couldn’t compete with the draught from the hole in the front door, big enough for the sheepdogs to walk through unhindered. They had no water indoors, only in the cowshed. Their English was limited: with different inflections “the buggers are having it” could accurately sum up any imaginable situation. With my present speech difficulties, I now use the same technique: “^^^^^^^^^ ^^^ ^^^^^^ ^^^^^” covers a wide range of meanings. Here, I learnt to feel at ease and included amongst a social gathering where I understood (then) not one word of the language. A good experience for Russia and other overseas work. (I now speak Welsh and quickly picked up the two most essential words of Russian: niet (no) and dollar (dollar).)

These friends caused my first near-death experience: They told us there had been TV warnings about Death-cap mushrooms. Symptoms – namely death – didn’t emerge for twenty-four hours, but once eaten, there was no cure. They showed us one – kept for safety in a shoe-box, and, for double-safety, held at arm’s length. Sure enough (thinking they were horse-mushrooms), we’d just feasted on lots! No symptoms yet, but no cure – just like life! What could we do? The only thing I could think of was go to bed and have a good sleep so I would be refreshed enough to die properly. (Although this would be my last chance to sleep, I didn’t find it very easy.) In the morning I woke up – apparently not dead yet. What to do now? The only thing I could now think of was to continue working on the roof. Around coffee-time – and still not dead – a friend came by. “Have you seen the horse-mushrooms?” he asked. “Are you sure they’re horse-mushrooms?” I didn’t want him dead too. “Yes. They’re illustrated in my book.” I now realized that my valley friends’ television only showed snow-pictures – good for stimulating the imagination, but not good for the nerves.

My wife wanted to farm, so we moved from this beautiful, hand-crafted house – a first, if grudging, lesson in Buddhist non-attachment. (Years later, I met a Buddhist monk who specialized in sand mandalas. Each coloured grain placed singly – three weeks of painstaking work. After a ceremony, everything is then scattered to the wind.) For me, this meant another two years of building up a (literally) falling down ruin. (One wall only needed a push to fall over.) This time, however, I had architectural work to fill before-breakfast and after-supper hours. After this, I hoped never to hand-mix concrete again. But this was not to be.

With friends we started a play-group. Looking for premises, we found a derelict school, vandalized, vampire-daubed and wholly uninhabitable. Our aspirations now expanded to a Steiner school, but, having bought the building, we had no money. Appeals failed to raise a penny so we were faced with a stark choice: sell up or start building with no money.

By a mistake, unfortunately never repeated, the non-profit-making playgroup accidentally made a £36 profit. With this we started. After de-vampirising, we could only do jobs – like digging foundations, but not concreting them – that cost no money. The moment we started, however, help and even money came our way from completely unknown sources. Inspiring and humbling to so experience that we were being ‘looked after from above’ – or so it felt. Goethe’s: “Whatever you can do, or dream to do, begin it. There is beauty, power and magic in it.” felt never so true.

Over about thirteen years we (mostly I) renovated and extended this school and then built a new kindergarten. No money meant (virtually) no mechanization, inefficient work sequences, labour-intensive reclaimed materials – and much heavy-labour drudgery. Nor were conditions particularly safe. Fortunately however, we only lost one and a half volunteers. The half-volunteer, half through a ceiling (interesting for the class below). The whole one in the septic tank. Fortunately again, we found him again – and trebly fortunate: it was only full of water.

Volunteers’ unpredictable numbers and skills – or lack of both – made work-planning a nightmare. This was hard work, physically, mentally and – with friction inevitable under such pressures – socially. This was exacerbated by being a founder. For community health, I already knew how vital it is that founders quickly withdraw from influence. I had done, but some new teachers feeling the need to undo what they perceived as ‘founder-influence’, also tried to undo the volunteer building programme. It not being right to divide the school, I acquiesced. Painful days! But the school, the volunteer building programme and even I survived – if only just!

The kindergarten was a child-revering school, every detail individually hand-made. Apparently, nobody had built anything like this before – anyway, not with unskilled volunteers. To my surprise, it got a lot of publicity and was favourably accepted – even by architects!

I was now working two days a week on the school, five on architecture, as well as the heavier farm-work and endless finishing-off-house tasks. Looking back, I wonder how I did so much. Never watching TV helped – after a while, snow is boring – but there were still pressures on family life. Inevitably, our marriage didn’t survive.

Now came black years. Worst of all was when my ex-wife took the children to Ireland. No phone, and for two long periods, no address. Despite some brighter interludes, failed relationships and encounters with manhunters, this was mostly a period of loss: I remember shaking with grief, too weak to stand and not caring whether I lived or died. A dangerous state – I don’t recommend it.  If it’s true about learning from mistakes, I should be a walking (or hobbling) encyclopedia by now. They say you must hit bottom before you can come back up. Poor bottom! Wasn’t character-development at school enough?

When I finally got to see my children, they were living in wooden huts, quite primitive but (apparently) happy. (Of their stepfather’s alcoholic rages, I knew nothing till they fled their home – disappearing from the world for three months – another black time.) Instead of a toilet there was the electric-cable trench. Fortunately, this was easy to find even under snow, at night. The texture underfoot was unmistakable. Also, once disturbed, there was smell confirmation. Around the huts, vegetation was particularly verdant. Could there be a connection between the trench leading downhill, its contents and trench-filling Irish rainfall? This way I learnt relationships are more significant than single things – or people.

In those days, I hardly travelled further than (long) walking distance. (Anyway I preferred walking to driving. Up to three miles, if something isn’t worth the extra half-hour each way, it isn’t worth going to.) I was also too busy to have contact with news and fashions. (This being the 1970s and 80s, perhaps I was fortunate?) All this changed overnight in 1991 following the publication of Places of the Soul. Into this book, I had distilled everything I knew about how places affect us – the fruit of a lifetime of observation, research and feedback from design, illumined by my sculpture background and practical building experience. Being one of the first books about ecological architecture and highly critical of establishment architects, I was surprised how well it was received.

Out of the blue, I was appointed visiting professor in Queen’s University, Belfast. Suddenly, I found being a professor meant people hung on my every word, however much drivel. Previously, however well thought-out whatever I said, nobody took it seriously. Like my attraction to bombing but frigidity towards tables, it was always too different from the acceptable norm.

Suddenly also, work took me across the world – to twenty countries (twenty-three if you agree Texas, Quebec and Kernow are independent) from California to Siberia, Norway to New Zeeland. Unlike walking, things can go wrong with long-distance travel. Walking, the worst that can happen is getting lost, at night, in heavy rain, in a field with a bull in it. Here, you can hope the bull is also lost. Not so flying. No bulls – although, on Aeroflot planes, there were calves. Late planes can cause problems: from digestive – supper at 6 a.m., breakfast at 5 p.m. – to bedlessness. Arriving late at Copenhagen after blizzard delays, I found the university (containing my room key) locked. In Ohio (after two days’ travel) I arrived to not find the person meeting me. I did have his university phone-number, but this too was shut. In Florida, there was no public transport to my destination city (population 100,000) ninety miles away. ‘Everyone’ – actually six people out of ten – has a car. (Even before the New Orleans floods, those without cars, didn’t count.) The arranged taxi didn’t come. Nor, two hours later (ninety miles plus inefficiency time) did its replacement. A further two hours later, the new office shift knew nothing about it and cared even less. With plenty of money, such problems would be trifling. Not, however – as most of my work was for not-for-profit bodies – on a zero budget. These were good lessons in pairing quick-thinking resourcefulness with absolute calm; survival initiative with patient acceptance. Unfortunately, I always thought too slowly. Fortunately, I usually compensated with impatience.

None of these however, prepared me for Russia.

On my very first day, I learnt the value of careful observation. The passport control officer checked my passport details meticulously. Name: Day – he looked me up and down: did I look like a day? Eye-colour: “hazel” (what does that mean: leaf, bark, nut?) – he looked me up and down: did I look barking nuts?  Height: 5¢ 8² – he again looked me up and down: was I really 51811 millimetres? Sex – yet again he carefully looked me up and down (a bit too carefully for comfort): did I look like a transvestite? (Well, I hope that was what he was looking at.) And so on…. After twenty minutes, I had passed inspection and he let me through. My conclusion: he couldn’t read English.

Nothing works in Russia; restaurants close for lunch (although saving staff wages, nobody understands why they can’t make a profit); concrete bits routinely fall off multi-storey buildings; and apartments have double layers of anti-bandit doors, seven locks between them – one of which is sure not to unlock when you need it. (Hence I’ve been locked in, when due to give a lecture; and out when needing to collect my luggage for a plane.)

Much of Russia is ugly – crumbling grey concrete tower-blocks with foot-wide cracks dribbling mastic. It’s all dirty – millions of square-miles of industrial haze: streets, their lampposts stolen, potholed and littered with broken vodka bottles. (Streets used to be cleaned each year on Lenin’s birthday – but since the fridge keeping his brain broke down, he’s no longer able to think about this.) One relief: strewn around Moscow’s Park of Culture, a collection of gigantic prone Lenins, Stalins and heroes of the KGB pointing the way forward. (They now point downward – actually, through the ground. Is this a lesson for life?). But I loved Russia. I met – especially in Siberia – a human warmth beyond imagination in the West.

       

      The heroic way downward

 

Nonetheless, none of this prepared me for Ukraine. In Crimea, to save water, it only ran from six to eight – and did run: where I stayed, there was neither tap nor plug. Also electricity went off at dusk, plunging the town into darkness and leaving us to grope our way around our accommodation, tripping over the dog in the process. This also silenced the sea-front discos just as clubbers arrived – another inexplicably failing business venture. The town was anyway quiet; I only ever saw two trucks, three cars and a bus that could only start downhill. Here I learnt how rich I am: how easy my life is! I also learnt that logic is not essential to life; vodka seems an adequate replacement.

Even this, however, didn’t prepare me for problems between Russia and Ukraine. I had both Russian and Ukrainian visas, but not – as I discovered – permission to re-enter Russia after four days in Ukraine. The border guard ordered me off the train. My Russian friend said, “Don’t! Let’s talk this out.” Was there a fine (bribe) to pay? No: unaccountably, the man was honest. She told him I was an important professor, needed for important work in Moscow, couldn’t there be a way? Eventually, he agreed to phone a superior and disappeared – with my passport – leaving an armed guard to ensure I did not get off the train. During this hour, I had visions of walking along the Russio-Ukrainian border, then the Belarus-Ukrainian, Polish-Ukrainian and Polish-Czech borders till I reached the Czech-Austrian one. Quite a long walk. For this I would need a good breakfast. No food in no-man’s land (no-men eat no meals) – and, I rather hoped, no mines. Feeling it appropriate to look calm, I tried to finish breakfast, but this – garlic chicken and bread – required use of my friend’s impressively big flick-knife (her Moscow street-defence; pepper-spray is less reliable – if held the wrong way round it’s counterproductive). So – no breakfast. Half my brain was making survival plans, the other half thinking "This can’t be happening to me. Surely God will look after me." He evidently did, for an hour later, the officer came back, full of smiles and I was allowed to stay on the train. Loud sighs of relief! Time now to open the Crimean brandy, then fetch boiling water from the corridor boiler for tea to soothe our brandy-burnt throats!

Different climates, different cultures, different adventures. But the main thing all this taught me was that whenever I arrived somewhere new, I knew nothing. (Actually I never knew nothing. From a test-yourself book, I found I had an IQ of two, which I have since proudly increased to four. It should really be five, but some questions have trick answers. For instance: “Which is the odd one out: Elephant, kangaroo or table?” Obviously it should be kangaroo – the only one with two legs – but the book gives another answer. I challenge anyone who says I’m stupid to double their IQ so dramatically! I now base my design method on knowing nothing – this lets me ask questions (especially silly ones – which often elicit the most useful answers).

Working in California turned everything I knew upside down. Most of my previous work had been rural; this was ten acres of mixed-use urban development. Commitment to sustainability provided the only continuity, but even here, there were economic and social issues as well as ecological ones – symbiotically interlinked. Moreover, instead of designing buildings against cold and wind, these must defy heat and induce cooling draughts. Nobody walked, only drove. Street community didn’t exist – indeed, public space wasn’t sociable, but dangerous. Saturday nights meant gunshots.

Later, when working to consensually design a yoga camp, I was able to learn enough yoga to stand on my head and really see the world upside down. This made things much clearer. My clients gave me a book called ‘Yoga Made Easy’. The cover illustration showed a man in knots. Nowhere, however, did it tell how to undo knots. Evidently, doing this wasn’t easy enough to describe. I wondered: was this a lesson for life – is it that only I can undo my own knots?

        Disabled yoga.

 

This tied in with what little I know of karma. According to Steiner (if I understand correctly), we are spiritual beings. But not fixed beings; we need to grow, develop. We can’t do this sitting on clouds polishing halos. To grow, we need real challenges, obstacles – things, people, situations. Hence we need to incarnate into bodies, to live – and die – in a material world. Our higher-self – or guardian angel – seeks out the particular challenges, growth-opportunities, we need. But growing can be hard work: it often hurts or doesn’t serve our egotistical wishes – so we avoid these challenges. But we can’t escape the need to resolve these issues, situations, aspects of ourselves – so they’re re-presented in different forms throughout life, even in subsequent incarnations. We can’t evade these issues, but – before we’re allowed onto clouds – must face them. Sometimes the only way is through illness.

My second marriage, despite a sunny start, was disastrous and brief. I should have learnt from yoga that everything looks the other way up, once it’s upside-down. The bleakness of its finish hit my health. Already ill, I fell and broke my rib – directly over the heart – and promptly followed that with pleurisy, then bronchitis. In those days, living wasn’t fun. I hadn’t realized I was dying. (Nobody had yet told me that we all are.) I should have believed it when told I couldn’t live without an automatic toaster-teamaker-alarm (put bread in one hole, teabag in another, water in the third. Wait one minute, then…. toasted teabag, soggy bread, steam in ear).

Lesson: always read instructions. Unfortunately, except for my grandmother – who was generous with them – life comes with few instructions; and death, even less.

Once I actually knew I was dying, I raced to finish my life-work book: Spirit & Place. Into this I crammed everything I knew. (Of course I’d done this with Places of the Soul, but since then I had lived even longer, reflected longer, and now had twelve years of multi-climate, multi-culture experience, informed by professorial research behind me – fortunately this didn’t affect the size of my behind.) Anyway, as a Gemini with a split-childhood, why shouldn’t I have two life-works? Indeed, as an only child, why shouldn’t I have anything I want?

As it happened, I didn’t die – and still haven’t yet. (Anyway, it’s now too late to die a young genius – so why bother? Nonetheless, under pressure of dying, I realized that some things I do are unique. Some – like my unique speech – isn’t worth recording. My uniquely malfunctioning private functions definitely shouldn’t be. But others, like my consensual design approach should be. Architects are trained to have brilliant ideas – but one person’s brilliant idea is someone else’s nightmare. Whereas brilliant nightmare-ideas can lead to fights, condensing design is innately consensual – even, as I experienced, with a multi-faith, multi-cultural group. ‘All’ it needs is to leave ego-baggage behind – simple only in theory! This technique – based on what a project needs to ‘say’, and building upon the place’s characteristics, past and future biography, soul and spirit – I hurried to write down as Consensus Design.

Life, in short, has been hard work. As I’ve always believed in what I was doing, I’ve generally enjoyed this. (Hand-mixing concrete excepted; but fortunately disability gets me out of this). But, as I learnt at school, life between work was different: for much of my life, not much fun. In the black years I was often depressed. But many, many people have lives incomparably harder than mine. Why aren’t they more miserable? Or is miserableness an attitude – nothing to do with how hard life is? In which case, why not choose happiness? That’s an attitude too.

One day, I decided I had had enough of being depressed – no longer would I suffer being victim to feeling low. I realized it’s nobody’s job but my own to feel sorry for me. This gave new meaning to “God helps those who help themselves” (despite the rider: “But God help those who get caught helping themselves”). Life may be unfair, but even less fair was to inflict this on others. Also, once I realized criticism is negative, doesn’t help anybody, I decided it was time to stop despising myself whenever I did things wrong. Thereafter, at any mistake, I would now think: “Drat! Silly me! There I go again! How can I do better next time?” Self-acceptance made life much lighter than self-criticism – also, without self-indulgent misery, I could better focus on improving my ways. Why didn’t I think of this sooner? (If only I had managed an IQ of five!)

This change of attitude certainly improved life. But it didn’t prepare me for what comes next. Usually, this is death. I had never thought of this until I was told I’m going to die. (This may be obvious, but again I can blame my IQ.) Dying opened a new chapter in my life: a journey of entirely new challenges, new relationships to things, places, people – and, ultimately, to myself. Now, instead of abstract philosophizing, things just went wrong – very wrong, repeatedly wrong. But, strangely, life became more fun. Perhaps for anything to be fun, for anyone to transform attitude, to appreciate life, things need to go wrong? Through dying, I began to learn to live.

 

 

2. Living (or Dying) with a Death-sentence Disease

 

I always used to think life was an upward journey. At school, they told me to grow up; at college, to pull my socks up; at work, to get up off my …. (I think the word was “donkey”). I was then expected to rise in the world. (Something to do with a kick up the donkey?) All this changed in just one day. The day I was diagnosed with Motor Neurone Disease (Lou Gehrig’s Disease, ALS – I’ve heard about Lou, but who was Al?). I asked the prognosis and was told “Usually one year. In your case (as diagnosis was difficult) probably several.” Frank. Perhaps I would have preferred a little less frankness.

Outwardly calm, but inwardly reeling, I often wondered what “several” meant: more than a couple, less than ten, probably less than half a dozen. Many prisoners on death row in US jails get longer. I now realized that every day is a day nearer death. (That might have always been so, but no-one had told me before.) I mentally wrote myself a programme: one year limping, one using a walking stick, one on two sticks, one on crutches, one on a Zimmer frame, one in a wheelchair, one in bed, one on a cloud doing harp practice (or – if unlucky – not on a cloud, but in a cloud (of smoke), stoking a furnace).

Disabled harp practice.

 

Unfortunately (for the programme), I’m not good at doing what the government tells me to do. It is now sixteen years: too many for “several”. I’m not dead, I’m not well, I’m significantly disabled (I now walk with a Zimmer frame and can barely speak) but I’ve never felt better in my life.

Why?

There are three nasty things about terminal illness: pain, fear of death, things going wrong with the body. I’m lucky. No pain. Were I in continual pain I probably wouldn’t think life was fun. Nor am I afraid of death. Of course, I may be deluding myself, but I don’t feel afraid. Why should I? After all, most people will probably die one day. (Some say all, but I’m cautious about being too categorical about anything.)

I started out by cultivating a stoical attitude. If death was the prognosis, I would just have to live with it. (Or – should I say? – die with it.) Anyway, I would have to live until I died. After that, there wouldn’t be much to worry about.

True, death doesn’t have to be forever. If you don’t believe in afterlife or reincarnation, you can pay a mere million dollars to be frozen till, at some time in the future, a cure is found. Of course, a cure is no use if you can’t pay the medical bills so it would be wise to set aside another million – and hope that, after inflation, it will buy more than a preliminary consultation. Nor would you want to come back poor, so add another million. This means that just before you die (this is important: after is too late!) you and two million dollars get safely frozen. Once frozen, however, your heirs might want to unfreeze the two million dollars. What is to stop them paying a mere thousand to have you unfrozen as well?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Cloud-sitting errors

 

Death didn’t seem a very appealing prospect. But my attitude changed when I began to meet some living dead: people who had already died – but not successfully; they were still alive. These actually enjoyed life – and told me death was even better. (I should have known, of course, that mountains go both up and down. Which is better depends on viewpoint. Climbers enjoy going up. Skiers find down more fun.)

Ready for life’s ups and downs.

 

The first ex-dead person I met had, as a teenager, been given experimental drugs. (US pharmaceutical companies used to test their drugs in Spain and Greece in those days. Now – I’m told – they use third-world countries.) Six of the seven patients so treated died. So did she – clinically. Unfortunately, she wasn’t allowed to stay dead. She experienced – as so many others have related – a bright light and the feeling of being enveloped in love. But for her the journey stopped: a gentle voice told her she was not yet ready for death – and she returned to the land of the living. For a long time afterward, she regretted not being allowed to properly die, so blissful was the experience. She also told me not to worry about only being given a year to live. After being told this for nine years, her doctors gave up telling her. After all, it isn’t very professional to tell a patient: “I’m sorry you aren’t dead. Whoops! I meant: I’m sorry, you aren’t dead. No. I really meant: You aren’t dead. I’m sorry.”

A mere two months later, I met someone else who had died – but she had done it five times (also in hospital, so five-fold professionally verified). Five times sounds like really serious dying practice – so she was really professional at dying and knew all about it. She was anyway a professional: a doctor – and, not surprisingly, an exceptional one, but more of her later.

So much for death. As I now have two terminal conditions – ALS/MND (usually terminal) and life (always terminal) – it’s probably going to come one day. Few of us want to accelerate that time, though many of us do so by our chosen lifestyles. As it seems it will be sooner for me, I must hurry to write this book. Hurrying, however, is something my illness has taught me not to even bother trying to do. Life, by necessity, is nice and slow. Anyway, it’s slow – and nicer that way; it gives me more chance to enjoy life.

Things going wrong is the biggest issue. Lots goes wrong: walking (and falling), carrying things, doing things, breathing and speaking, eating, drinking and peeing; getting dressed, turning over in bed, and more...

       

     Wrong wings – I hope!

 

When I first started limping, I hoped no-one would notice, but after a while it wasn’t something I could hide. Then came a new symptom: “inappropriate laughter”. I not only laughed at inappropriate moments, but made decidedly odd noises when I did so. These were very embarrassing. My teenage daughter didn’t dare sit beside me in the cinema! Unfortunately, so odd were my choking, gasping and wheezing trying-not-to-laugh noises that I couldn’t help laughing at these. (Why hadn’t they told me I would deteriorate to laughing at myself?) There is a logic here I don’t understand: Laughing is a symptom of my illness. Illness is Bad. But laughing makes life more fun. Is it that illness and life don’t go together? Does that mean I shouldn’t be alive?

Of course there are two approaches to humour in adversity. One is: if you don’t laugh, you can only cry. The other is that the world and its happenings really are funny. Unfortunately, it’s hard to laugh if you only want to cry. Fortunately, it’s hard to cry if you can’t help laughing.

The trouble is that just about everything can go wrong. Even things that can’t go wrong, do when I do them. As I can’t help (inappropriately) laughing, these now go even more hilariously wrong. This makes it hard to be too serious about anything. As I can’t help laughing at the not-funny, eventually, (almost) everything ends up being funny. Not necessarily easy, but at least funny – and this is much more important. After all, we can live without an easy life, but what sort of life do we live if it isn’t fun?

Perhaps not everything is funny. Some things are only funny afterwards. Some very few things, just like death, are never funny. This is a pity, because as long as I continue to resent them, I can’t grow. Most things however are so comical – or anyway, odd – that life (which is, after all, the process of dying) is better now than it ever was before my illness. It’s certainly much more fun.
3. (Almost) Coping: a Therapeutic Journey

 

My illness has developed slowly. So have my disabilities. Fortunately, these didn’t all appear at once; only one new thing goes wrong at a time. Unfortunately, the newest to emerge is always something I just can’t cope with – until something else goes wrong and I realize how easy (by comparison) the last problem had been.

Initially, I found limping, falling, and clumsiness embarrassing. But as soon as I could cope with these, I developed sneezing. I just couldn’t cope with this. Sneezing may sound inconsequential, but it isn’t sociable. It’s also dangerous for the person I am talking to. My sneezes are uncontrollable, violent and wet. Moreover, if I’ve just eaten, there are food bits too – an unfortunate waste. Naturally I politely turn away from anyone near me, but my body jerks back to frontal posture at the key point of the sneeze. So, unless they duck, they get a wet face. If they do duck, they only get a hair wash. As they can’t see the food bits decoratively topping their head, I feel it wouldn’t be polite to upset them by mentioning these.

Curiously, sneezing while eating seems to lower my popularity. Few people say “Bless you”. Most appear to think the opposite. Some don’t actually curse me; they just look disgusted and wipe their faces.

Lesson to be learnt: don’t be ill and ill (cold and MND/ALS) at the same time.

Additional lesson to be learnt: sitting opposed to friends is rude; sitting beside them is more sociable.

After I got used to this, I could cope with everything else, but not incontinence. This is embarrassing. It’s very embarrassing to wet khaki trousers then stand in front of 300 people to lecture. Only by concentrating solely on what I had to say could I cope with it. Still, no doubt my audience remembered the lecturer, if not the lecture!

As I got slower, incontinence got worse. Usually, I would just get to the toilet in time, no time to shut the door, but then before I reached the receptacle.... Totally soaked trousers aren’t embarrassing – they’re humiliating. Pale trousers show pee conspicuously, but even dark ones go darker when wet. This led me to black trousers.

The next step was to wear nappies (diapers). These are convenient, but do have some disadvantages. As they fill – and over-fill – quickly, I seek every opportunity to pee conventionally. Nappies aren’t easy with ‘man-trap’ toilets – the kind where the seat won’t stay up but falls like a guillotine when you least expect it. I need one hand to hold the nappy out of the way, one to direct aim and one to hold back the seat to prevent amputation. I may look and sound odd, but I’m not three-handed. So, which hand can I dispense with? If the first hand, I will pee in my trousers; if the second, I will pee all over the wall; if the third, I will never pee again. Such toilets put me off women’s lib.

As incontinence got worse, the nappies got bigger – hence embarrassingly bulkier. The maximum size – the size I felt most secure with – can absorb one litre. That is to say, if you carefully trickle water all over its whole area, it will hold one litre. My anatomy is not so diffuse. If I jet unmentionable liquid at one point, the nappy rapidly overfills and overflows. As the jet is rarely symmetrically aligned, overflow is usually long before full capacity is reached, hence copious. But even when they don’t overflow, nappies aren’t problem-free. One litre weighs over two pounds – almost the weight of a brick. My underpants are not designed to carry bricks. The waistband (usually) holds, but the brick works its way through the leg-hole, falling on my foot with a publicly audible squelch. It then unrolls across the floor. In a crowd, you can hope there are too many legs to see feet, and that by looking around disapprovingly, I could pretend the noise came from a neighbour – just as I could with an indiscreet fart. But I daren’t stand so close to people lest they trip over my crutches and bring me down. This means embarrassment is unavoidable.

Lesson to be learnt: avoid bricks in trousers.

The inadequacy of nappies led me to sheaths and leg-bags. In effect, I am now a walking (actually hobbling) plumbing system. Plumbing only works if all joints fit tightly. Consequently, what plumbers innocently term male and female components must be sized accurately. (Having seen plumbing-trade calendars, however, I’m not fully convinced all plumbers are so innocent.) To ensure leak-free joints, therefore, convene sheathes come with a penis sizing gauge. The sizes are: small, medium, standard, large, and extra-large. ‘Small’ is the diameter of my little-finger, so safely pre-pubescent. All the other size names are non-threatening for the male ego. Had a marketing psychologist been involved, however, the gauge would start with pencil-diameter ‘cute’ and pen-diameter ‘standard’ (neither manufactured), then progress through ‘large’, ‘extra-large’, mega-huge’, ‘gigantic’ and ‘elephantine’.

      Penis sizing is open to psychological interpretation.

 

The pee-bag fastens to my leg with two Velcro straps. Simple as these are in principle, their tension isn’t easy to get right. If secured too tightly, they tourniquet my leg. This risks gangrene and a lost foot. If they’re too loose, the full bag slides down my leg and ankle until I’m hanging a brick off something never designed for hanging bricks. Also it’s now so low I can tread on it. This risks a burst bag. Which is worse: loosing a foot or private distortion and public embarrassment?

    With a urine bag, nobody could ever know I’m incontinent. They merely think I have a (variable) deformity. 

Mostly, however, this system works well – at home. At home I have a bucket to drain the bag into, which I then empty into the toilet. But in town? Here, there are only public toilets – and as I can’t get my foot high enough to empty the bag into them and there are no floor-drains, what can I do except hold a lamppost and pretend the puddle had been left there by a dog? As this isn’t very sociable, hygienic or even legal, it means travel is still not problem-free.

Sheaths and leg-bags sound like the answer to all problems – but even here, there are snags. The sheath is like a condom with a tube outlet (rendering it useless for black market resale to underage teenagers). Being a ‘unique strapless design’ (What, I wonder, did the strap secure to? And was it leather or rubber?), it relies on glue.  The first sheaths I had, used something akin to superglue. Reassuringly secure by day, but half-an-hour (or more!) of agony to remove at night.

No doubt there were complaints, if not personal injury law-suits, for the Mark 2 sheathes now use a more willy-friendly glue. Painless – unless they catch hairs! These likewise are painless, indeed unfelt, until I fill my bag – also one litre. This pulls them into tension so now I have to walk around with a brick hung off my pubic hair. This is not painless. Fortunately this can be remedied. All it requires is a pocket-knife, courage – and privacy. Invariably, however, I’m in a public place where unzipping, fiddling – and, worse, inserting a knife, might raise eyebrows. Furthermore, few people feel confident being operated on by a spastic surgeon who can’t even keep his balance. Nor do I.

There are also plumbing problems. Occasionally the outlet tap snags on my trousers and opens. This isn’t only embarrassing, but can also be socially isolating. On one occasion, I found myself marooned in the middle of a lake. Wet floors being lethally slippery for crutches, all I could do was stand still and hope to be rescued.

Joints can also come loose. Fortunately, they don’t often. Even more fortunately, they only do so when the bag is at least half full. Or sometimes there is a twist in the sheath. Twists slow flow, so increase water-pressure. Water-pressure isn’t good for push-fit plumbing. I never was a good plumber. Invariably, I would find I needed one special part at four on Friday afternoon, just when builders’ merchants close. In carpentry, you can make whatever part you need. In plumbing, you can only wait till Monday morning with much gnashing of teeth. It must be karma that I am a pee-plumber now.

Lesson to be learnt: Gnashing teeth builds up a store of embarrassment later.

After I got used to this, I could cope with everything else, but not regurgitation. Sometimes this is just stomach-acid which burns my throat so I can’t talk – or even, for a while, can’t breathe as breathing fans flames into my windpipe. More usually, I just regurgitate recent food or drink. Cows enjoy this. I don’t. It can be quite revolting – especially if it’s the remains of an indigestibly unpleasant meal. This has led me to appreciate (savour is too strong a word!) nicer tasting regurgitations.

Usually I keep my mouth shut. This is polite and sociable, but I don’t always do it. One disadvantage is that if I’m breathing in, I can breathe in recent repast and choke. This is not a good way to enjoy food. Fortunately the district nurse lent me a suction pump. Unfortunately this has a short lead, so I must be careful only to choke near an electrical socket. With the pump come two suction nozzles. One is for sucking through the mouth. And the other one: which opening is that to suck from?

Sometimes my mouth is open. This lets everything slosh out – as much a surprise to any companion as it is for me. This is a good way to loose friends.

Being so unpredictable, with not even half-a-second’s warning, regurgitation can be nerve-wracking if I’m working on an architectural drawing or book illustration. Weeks of work wasted – and breakfast wasted too! Sometimes I think the world isn’t fair.

Occasionally, however, my mouth is only slightly open. This is worst. Like putting a finger over a hose nozzle, power increases a hundred-fold. This can be dangerous for the person I’m speaking to. It also makes me nervous of talking to important people as the more important they are, generally the less humorous. But even amongst humorous people, very few seem to enjoy my breakfast – or anyway, not hour-old breakfast.

Lesson to be learnt: it’s considered polite to keep my food to myself. Better for me, better for my friends – and much more economical.

Further lesson to be learnt: don’t talk and eat. Input and output, dribble and drivel, easily become confused.

After I got used to this, I could cope with everything else, but not poor speech. Speaking is hard work – and slow. Often I have to repeat things three or four times before I’m understood. This is a disadvantage. Slowness, however, is an advantage. It gives me plenty of time to think – hence good opportunity to pretend to be wise.

Another aspect of slowness is that I often miss the chance to say something. Mostly, this doesn’t matter, but occasionally it’s important. My memory isn’t good, so to remember whatever it was until the next day, I must use technique. I repeat the whatever-it-was to myself in at least four different ways: different words, different grammar, different languages. This usually works – as long as I can remember the translation.

In many ways, not being able to speak is the hardest, certainly the most frustrating, of all my disabilities. But it’s also the greatest gift. Every word is such hard work – both to enunciate and for someone else to understand – that I need to choose words carefully, shorten sentences, and be sure that anything I say is worth the effort. Indeed I often conclude that my thought isn’t worth saying, so choose silence over speech. In short – and it must be short – I am forced to refine whatever I say to the essential minimum. This doesn’t mean that I am refined, but it does ensure that I don’t waste anyone else’s time with things not worth saying. (Actually, I already knew that brevity sells newspapers. Two words are all a headline needs. ‘SEX SHOCK’ – or variations like ‘SHOCKING SEX’, ‘SEXY STOCKING – suffice for any newsworthy story. I just hadn’t learnt that brevity is also applicable to life.)

Not being able to do things myself, but having to rely on instructing others, has taught me that even simple statements are open to wide-ranging interpretations. When, at a group table, I asked “Can you push my chair in please.”, the responses were varied:

“He wants to be moved to the side.”

“Turn him this way.”

“He wants his plate filled.”

Most listeners were mostly correct: I did want something. But one was strikingly novel. “Where did you say you lived dear?” I didn’t know my speech was that bad! “I’m a little bit deaf.” What a relief – I hoped this was an understatement!

Some people never understand me. They think they understand – and that is the problem. Once they ‘know’ what I’m saying – often totally opposite to what I think I’m saying – every time I repeat it, their ‘understanding’ is confirmed. This leads to exchanges like:

“Could you pass the milk please.”

“You want some prunes?”

“No! Milk.”

“How many, dear?”

“I don’t want prunes.”

“I agree. I always have them too – keeps everything running smoothly.”

‘Things’ running smoothly is exactly what I do not want. My legs can’t run, so what can I do if anything else wants to? But anyway, what can I do? I have to learn to accept whatever life brings. Even if this is prunes – and their consequences. 

In such communication impasses I eventually have to accept whatever they think I said. Indeed, accept it or not, as I have, in their ears, said it four times, I have no understandable argument to counter this. This continually reminds me of a dentist who, whenever he had the drill safely at work in my mouth, used to tell me what I believed in and did. I didn’t and didn’t. In the circumstances, however, it seemed wise not to deny it.

Interestingly, to those who can’t understand me, naughty Voice gives up at the third attempt. Non-understanders generally either don’t listen or are so fixed in what they think they’ve heard they can’t entertain other possibilities. So even if they did understand my speech, they wouldn’t hear what I said. Hence: why bother? Voice seems to know this better than I do. In fact, it seems that the less people know, the more they’re sure they do, so the less they listen.

Lesson to be learnt: ‘knowledge’ blinds listening observation.

Further lesson to be learnt: It’s just not worth talking to people who won’t listen.

Political lesson to be learnt: Only vote for politicians with speech impediments. It isn’t worth their while saying anything not worth saying. Totally dumb ones are best. (True, some world leaders are totally dumb, but ones who can’t speak are safer.)

When my speech is too bad, nobody understands so I draw pictures, write words or use hand signals. For brevity, I edit hard, so just write the keywords of what I want to say, like ‘book on shelf 2 U.’ This frequently results in blank expressions. Obviously most people are used to full sentences, so I have to then add the preceding part of the sentence. There being no space in the appropriate part of the paper, this now reads: ‘book on shelf 2 U I want 2 give.’ This covers all the essential information, but unfortunately, not everyone is used to understanding life backwards. (Was it worth giving them a book?)

There is also the small problem that few people can read my writing, and even less can read it upside down. They ought to, because turning the paper usually means I drop it. That’s why I prefer drawing. It’s also quicker. And, as is widely said: “ a picture is worth a thousand words.” Some people, however, have a vocabulary of less than one thousand words. (For a pub conversation, you only need six hundred. Indeed, when you reach the stage of maximum fluency, ten will suffice.) For sub-thousand-worders, two pictures are a thousand words too many. There are also a surprising number of people who are too used to a verbal world; expecting to read words, they don’t even understand pictures. When I drew bookshelves to show where something was, one person tried to read each shelf-line as a word. Inexplicably, she couldn’t.

Lesson to be learnt: you can’t make everyone happy, all the time. You can’t make everyone understand, all the time. You can’t make some people understand, any of the time.

          This drawing meant to say: “Please close the curtains.” But the nurse answered: “Which book do you want?” At last I understand why the Bible says: “In the beginning was the word.” Not: “In the beginning was the pictures.”

 

When all else fails, hand signals are the most unequivocal. For normal daily life you only need a few: thumb up for “yes” or “good”; thumb down for “no” or bad”, and fingers to count with. As my better arm only rotates about sixty degrees, there isn’t much difference between good and bad – just like life. Also, many unobservant people can’t tell the difference – again, like life. Unfortunately, some people like to ask double questions like: “Would you like this one? Or this one?” You can’t answer this with a simple affirmative thumb, so I sign “one” or “two” with my fingers. With limited arm rotation, my palms face me when putting fingers up. One slight problem is that some people take offence at the number one, as communicated by a finger. Some even get offended by the number two,

Lesson to be learnt: communication is always open to misinterpretation.

Further lesson to be learnt: people only hear what they expect – even if I use finger gestures for clarity.

Finger gestures are fine for one-word answers, but more complicated questions require richer answers. T for tea is easy to gesture with the hands. But milk? For this I resort to hand-milking movements. What could be clearer? (I do, however, omit the bucket clenched between my thighs. This could open the way to more serious misunderstandings.) Likewise, when a nurse, asking about my sleep, didn’t understand when I said the dawn birds wake me, I had to resort to whole-body gestures. I thought this would help, but from her expression, she understood even less. In fairness, I doubt many of her patients flap their arms and extend their noses with finger and thumb making tweeting motions. Apparently, this was not the answer she had been expecting.

So much for simple statements. What about complicated sentences involving things like: chilies, digestive disturbance (without being rude), and Australians (remember: I can’t stand on my head)? This strains my powers of mime and can produce very interesting expressions on my listeners’ (actually: watchers’) faces. Also, some words like “tea-break” are easy to gesture (T and break), but easily misunderstood (I never wanted broken tea). Sometimes, I realize, it’s better not to say anything. A lesson I should have learnt years ago.

If talking is hard, telephoning is even harder. My survival skills, like drawing pictures and making hand gestures, don’t seem to help. Worst of all is ringing a business in London. London seems to run faster than where I live, and I’m slow anyway. Often it goes like this: ring, ring, ring, “Hello?” Having breathed out during the rings, I now have to take a breath to speak. This gives just enough time for the other person to say three more hellos and put the phone down. Sometimes they’re so speedy that they start (what they assume is inaudible) swearing before their handset has quite reached its cradle. I try again. Repeat – and rather more swearing. When I do eventually get to speak, most people don’t understand me. They know I’m drunk – they can hear how I slur words, and I’ve already tried to irritate them, which they don’t think funny. (Few ask whether I do.) Anyway, they’re busy and have much more important things to do than wait for me to breathe.

Often they ask me to repeat something. I take a breath and try again. The more forbearing ones suggest I get someone else to speak to them. I try, therefore, to call someone else in the house; I shout “Hello”. From the phone comes “Hello”. “I’m trying to call someone to speak to you.” “Can you call someone to speak to me?” “I’m trying to.” “Will you call someone!” I turn away from the phone and shout “Hello”. “Hello” from the phone and our non-conversation starts all over again.

Unfortunately, my bad language can upset people in ways I never intended. When staying at a clinic and just about to telephone a friend, the phone rang. Remarkable! Telepathy! But it wasn’t my friend. An unknown voice said “How are you darling?” Wracking my brains as to who this could be, I asked who was speaking. Answer: “Paul, you do sound bad.” “I’m not Paul.” “Darling, I’m so sorry.” “I’m not Paul. I’m Christopher.” “Don’t worry, darling, I understand. l hope you’ll soon be feeling better. I can tell from your voice how low you are.” It’s difficult to disengage from a conversation when whatever you say gets you further onto the hook. All I could offer was many “good-byes” – none of which were understood – and put the phone down. At least, however, I did discover that even strangers know that I am low, and also that Paul was bad – though whether ‘interesting’ or criminal, I didn’t know.

Bad language isn’t good for work. Once potential clients hear my voice, they quickly decide they don’t want to talk to a drunkard and hang up. With those I have to ring back, it’s even worse. While I was struggling to speak, one woman thought I was a ‘breather’. So far, however, I’ve evaded the police – or perhaps they just can’t think of a way to interview me?

What’s the point of answering phones if no-one understands me? I realized I should try to learn few essential words – one each week. The first – and most invaluable – was “NO”. In any situation, this is a safe answer, so qualifies me for any job. Next, I learnt “DON’T”. A vital defensive word, this is always useful, and would guarantee my safety from any misguided help. Next came “I”. This lets me personalize all communication. These three words suffice for all needs, spanning as they do from “NO” through “I DON’T KNOW” (true practically all the time) to “AYE”. I therefore felt no need for any more, so stopped learning in case I wore out my brain.

One advantage of depending on writing to ‘speak’ is that everyone knows where to find pens and pencils so nobody needs to trouble me. The only guaranteed place is my desk. For some mysterious reason, the working ones migrate to equally mysterious destinations. The white pencils (who ever invented these? and why?) and dried-up ballpoints, however, don’t. Fortunately, nobody wants dried-up ballpoints. Nor do I. But at least I can always throw them on the floor. It must be worse for surgeons. Surgeon carefully draws incision line on patient. Pen doesn’t mark. Try again, pressing harder. Patient screams. In desperation, scribble frantically until pen finally works. But now surgeon is faced with the most challengingly complex incision in his life.

Speaking badly has other advantages too: I no longer need to fend off PVC window salesmen with “Has Jesus saved you yet?” They get sufficiently fed up talking to me: a good excuse to not answer the phone. (Actually I don’t need an excuse – if it’s out of reach I can’t get to it in time). Mostly, however, bad speech – like bad language – is a disadvantage. Of all disabilities, not being able to speak is the most acutely frustrating. It seals many doors. Even my hospital’s speech therapy department’s door is entry-phone controlled. All Internet help-lines to officialdom and business lead to “contact us”: a telephone number. For data-security, many organizations won’t speak to my wife, as she’s the wrong gender to be Mr Day. (I tell her to say she’s had a sex-change, but still no luck.) By this simple stratagem, they halve the risk of fraud. Only male impostors can succeed. Fortunately, from my grandmother, I had learnt “do as I say, not as I do.” Unfortunately, this is no longer helpful advice. Whatever I say makes no more sense than what I do.

I can cope with all this, even not speaking, but the worst thing of all is dependency. Having to depend on people who don’t care is wearing. Depending on people who do care is even worse. I become a burden they would never give up. This is not a good thing to do to other people. But I have no choice. Or have I?

Before I became ill, I used to do too much. Working, building, single-parenting; growing food, volunteer projects, lecturing, writing – every waking minute. Fortunately, I enjoyed everything I did. Some people have to do as much but hate it. Nonetheless, it was too much. What could I give up? Anyone who has been in this position knows the answer: nothing. There was, however, an alternative: get ill. I now can do hardly anything. Just as bad speech has forced me to learn to edit hard and not say things, so does incapacity force me to prioritize and not do things. I also have to learn to prioritize and limit what I ask of others.

Alternatively, I could look forward to the next thing to go wrong – something new not to cope with; something to make all previous problems seem bearable.