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You wasted a lot of my life. Nothing you did was ever real.
*
In the weeks and months that followed my diagnosis I received dozens of suggestions about how I might combat my decline. Some fell into the category of tonic and these included several exotic examples, such as a paste made from mixing water with powdered scrapings from reindeer-horn velvet. I was also advised to start my day with warming spices, so that I might have a ginger or a cinnamon tea. Or I could have eggs for breakfast and cook them with turmeric and cumin.
Other suggestions have been less to do with ingestion than the functions or processes that I could add or alter within my body. In one of the loveliest examples a friend espoused the medical benefits that singing could offer me. A more prosaic example was that I could slow the progression of the disease by chewing my food more slowly.
In some cases, these suggestions have been delivered with little confidence. Perhaps they’re offered if a person feels awkward and wants to think of something positive to say – so that it might be something they’d heard about from someone or caught as a snippet on the radio. On one occasion I received a text from a friend to inform me that a new drugs trial in India had yielded miraculous results. I texted back to ask for more details but, unfortunately, he was unable to be more specific. I wondered if he might have the name of a town or medical institution so that I could narrow it down a little but, no, it was just something that was happening broadly within the nation of India.
Others have been far more confident in their approaches – strikingly so. I’m particularly thinking of two parents from Tom’s previous school in Portugal. In both cases, I didn’t know the people involved that well and they had first learnt of my condition from chatting to another parent in the playground. In the case of these two women it was interesting to note some common attributes to their communication style. Both times the initial engagement involved gently touching my elbow and very sensitively, very earnestly, leading me away from a mingled group of parents. What I then noticed was the closeness of the physical space they occupied, so that the intensity of the eye contact lent the exchange a certain gravity and seriousness.
As for the suggestions themselves, they were both to do with diet. I have noticed that people can be at their most fervent when making claims that this or that diet can combat my decline. I group these two approaches together because each person espoused a dietary regime which, as far as I can tell, appeared to be the diametric opposite of the other. So that one of them was suggesting a diet based exclusively on fats and animal protein, whilst the other suggested a vegetarian diet of brown rice, sea vegetables and pulses.
As these two separate discussions continued, and the volume of parents surrounding us thinned significantly, it became clear that these two women weren’t actually prescribing a bespoke cure for my specific neurological condition; in fact, it wasn’t entirely clear that they knew what my condition was. It didn’t appear to be the case that the diets could specifically prevent my motor neurones dying. Instead I was offered the reassurance that they themselves, and their family – as notably healthy and flourishing individuals – were also following this dietary regime and that anyone else in their right mind should be doing the same. As time went on, and we met repeatedly in the playground – and it became clear that I wasn’t following their guidance – the looks on their faces conveyed a saintly form of disappointment. I had been offered the way but clearly lacked piety. In this respect, it seemed that I hadn’t been approached by two friendly and knowledgeable parents but by two variants of the same religion.
The list of cures I receive continues to grow. It seems important for some people to feel that they can do something about what’s happening to me. Sometimes this is offered in a caring or despairing way and sometimes it’s evangelical. But in all cases it feels like a frustration with the idea that things happen: the idea that we all might grow old or that any of us might contract an illness or a disease and not be able to do anything about it, or the idea that none of us really possess control over our lives. For many people this is clearly unbearable and intolerable, so that just being is frightening – and that the only possible sane response is to be doing something.
*
The loss of motor neurones begins with a display – something visible just beneath the surface of the skin. You could watch my wrist and observe tiny pulsing movements working their way up my arm – like a trapped cricket trying to find its way out. Or if you were to place an open hand on the side of my neck, you might wait there for a moment and then suddenly squeak or let out a little ‘Ooh!’ as you snatch your hand away.
These are the flickerings of a light bulb before the plink and fizz of a blown filament. Tiny faltering premonitions of loss – a kind of panic or disturbance in a muscle that is losing its sense of purpose within the body. For some reason, these twitches make me think of earthworms after the rain – when the soil is claggy and they come to the surface for oxygen: the way they blindly pop out of the soil, flailing and wriggling in the unnatural habitat of the air.
When I hold Gill’s hand the sensation transmits through the ends of my fingers or through the muscle at the base of my thumb. It’s hard to feel her flinching from the movements of my body – from the subcutaneous crickets and the earthworms popping up for air. Hard to reassure her that at least the fibres are still looking for connection – that they haven’t given up – that it’s not the end.
But these fasciculations are beginning to get less frequent now – like that moment at the end of a garden fireworks display when the nostrils are pleasingly filled with sulphur and the last firework in the box fizzles out and someone hands you a sausage roll, and you’re standing by the embers of the bonfire watching the ghost of an image from a burnt-out sparkler.
*
A couple of times in the writing of this book I’ve discarded more extended metaphors that attempted to convey what this disease is – and its effect on the body. In the first, I was describing a steel suspension bridge: the way the bridge appears to function normally, whilst up above, and out of view of the traffic, the cables supporting the stanchions are snapping one by one. Over time, fewer of the cables are taking more of the strain until, finally, a steel stanchion begins to creak and wobble. From this point, decay continues much as it did before but now visible and obvious.
The second of my abandoned metaphors employed the image of a corner shop, in which shelf items mysteriously disappear through the walls or the floor. Increasingly, the stock appears sporadic and the shop becomes less useful as a place for anyone to reliably buy their groceries. Sometimes the shop door opens and the visitor looks around, having arrived here through habit, forgetting that the place has fallen into decline. Others still choose to come, if they have the time, remembering what it was – or they maintain their shopping habit out of nostalgia and affection.
It’s so easy to reach for these metaphors of loss and decay, and I think this has something to do with the absence of concrete information about what this disease actually is, or what causes it. No one appears to know why or how or when motor neurones die within the body; why the line of communication between brain and muscular tissue breaks down. It remains a mystery, so that in thinking and writing about my degenerating body, imagery and imagination can be everything. This is the reason why, despite writing about the removal of extended metaphors, I’m nonetheless tripping over smaller, rat-size examples of imagery darting in from every angle.
But when reaching too far into metaphor, the experience of what something actually feels like becomes lost – and because I feel this experience so profoundly within my body, it’s description that really matters to me. I’ve had my moment here – descending into metaphor – to help explain the little I know about how this disease works. But I don’t experience the disease, I experience my body, and this is what interests me. I know enough not to think that sea vegetables or reindeer velvet can delay its course. Of course, somewhere out there, a reason exists for why these neurones die, and there’s probably something out there that will stop this. Maybe it is sea vegetables! But these dart-throwing investigations can’t be anything to do with me – not whilst the shamans are still shaking their sticks at the moon. They don’t interest me.
All that interests me is being with people – and with my body as it dies – and writing about it.
*
On the other side of the room Tom and Jimmy are flapping on our bed like unnetted herrings on the deck of a trawler. Gill’s laughing and the boys are squealing, but I’m over here with my recliner all the way back resting my tongue on the floor of my mouth. It’s unusual to be this much on the outside of an escapade, not even to be enjoying the fact that my children are so happy. I could be in an adjacent hotel room or in a split time frame. There are other moments when I will sit and enjoy: laughing or smiling at acrobatics, or boofing a pillow into someone’s face. But on this occasion my recliner is tilted back and I’m interested in the difference between the roofs of the two terraced houses I can see through the window. The slate on one roof is clean and new, but where the roof becomes another property the roofer has left the moss-barnacled slates unchanged. It’s the same roof. A shared roof. But the two parts are cared for as if they exist in different continents.
Gill and I can still talk and talk when we get the chance, and I can still read books to the boys, but this evening my facial and tongue muscles have grown more tired than usual. I spent the day on the phone to estate agents, solicitors and various health professionals. I became hoarse quite early on in the day and then the susceptible muscle at the base of my tongue began to ache. I used my reserves and now I’m spent. So I’ve tilted myself back in this moment and taken myself away. To a time, perhaps a year from now, when the voice is gone and the face is gone. And my hands can no longer make signs. Preparing for disability is like going on holiday somewhere new and wondering what clothes to pack. For now, I’m scouting it out. Just temporarily – just for an hour or two. Being elsewhere, in an expanding private world; a world I will get to know. I’m glad to feel it first. Preparing for when I will be looking out at the life of my family. Knowing that I was out there once. The clown. The protagonist. The herring.
Doctor Tiago’s Hydroelectric Power Plant (#ulink_bbc4cf0c-8cae-5e8b-9531-46671e3d52f1)
In the moments before Doctor Tiago called me in, I was propping up a wall with my shoulder. When you spend a lot of time in hospitals being undiagnosed, you start propping up walls and lounging about and picking your nose in waiting rooms. And not being prepared for certainty when it comes.
An hour or two before, Doctor Tiago had been scratching away at my body with a pin. But before all this, I’d been lying on my front and waiting. I could hear him scrabbling about, trying to find something. I heard the clasp of his bag. I heard him stirring the contents around. The thin metallic sound of a cabinet door being opened and shut. A drawer sliding open and then slamming shut. He’d been searching in the room for something sharp. I realized that later. I don’t know where he got the pin from. Thinking about it, I was lying face down: it might not have been a pin. What was it? This wasn’t the first time he’d taken to me with something sharp. He’d made some preliminary etchings on my last visit, but this time he was dragging the pin rapidly across and around my back and legs in wide swirling motions; an impressionist holding their brush at the very tip of the handle, standing back from their canvas and operating in broad strokes. He’d stop for a moment and then start again. Then he’d have another thought and drag the pin wildly in a different direction. And when I sat up he was holding his chin and thinking.
‘Your face is lopsided.’
‘Is it?’
I really like Doctor Tiago. His smile is perhaps the broadest and most expressive smile I have ever encountered. It is so broad and all-encompassing that it seems to subsume his entire face, right up to his eyebrows. A couple of months earlier he had found me wandering the corridors, having arrived at the hospital for a non-existent appointment. He seemed much more like a very young and enthusiastic uncle than a doctor. On that occasion he set up an impromptu clinic in what seemed like a stationery cupboard and we went from there. In all my time with the hospital, I was never really aware of how appointments happened. They just did. It was all quite miraculous. And so I don’t mind that he put so much effort into trying to find a brain tumour. He was clearly misled by my face. Even the neurologist who did my CAT scan said I had a brain tumour. They couldn’t find any evidence of a tumour. This didn’t matter. They remained convinced. Cheerfully so. Apparently a brain tumour is great news.
I wonder why it is important to know. It always seems so very important, particularly for doctors. But surely they seldom know. Or they seldom really know. Doctor Tiago ‘knew’ I had a brain tumour within five minutes of meeting me. But this wasn’t knowing; this was confidence. We’d have had a better conversation without confidence getting in the way. There’s so much to simply not know about the body. I’d prefer a person who really knows about something (like Doctor Tiago) to tell me all the myriad fascinating things they don’t know. Because however much a person knows about something, that knowing is minuscule compared to what they don’t know. A scale demonstration of this would involve standing next to a mountain and pouring a kilo bag of sugar on the ground. Standing back and comparing these two mounds would give the onlooker a visual comparison between the little that is known about anything by anyone (the sugar) and the vastness of what is unknown about everything by everyone (the mountain). None of us know. Even the most knowledgeable amongst us don’t know. Doctor Tiago didn’t know. I’d like to have spent more time with Doctor Tiago not knowing.
This was the third time I had seen Doctor Tiago. Each time he would make me clench my teeth and then he’d nod with certainty. This time I clenched my teeth and he seemed less certain. He was smiling less. I watched him chew on the end of a biro, weighing up whether to buy me a fantastic new train set or book tokens. Instead he sent me along the corridor to a woman who inserted much more serious and painful needles. I asked her about the brain tumour, but she wasn’t particularly interested. I liked her as well, but at no point did she give me the impression that she was my relative.
It was about an hour later when we walked back in to see Doctor Tiago. He was now seated at a desk fiddling with a piece of paper and this was when Gill noticed that his leg was twitching. Not that he wasn’t smiling any more. It’s just that on this occasion his frown needed to be displaced elsewhere within his body. In this case, to his right femur and the quadriceps that were supporting it. And this time he had a medical student with him who stood squarely and uprightly by his side, reflecting an air of high rank on Doctor Tiago to which, to his great credit, he seemed entirely unsuited. Because here was his smile again. I wonder if this is all a doctor needs. Just an engulfing smile. Its irradiating and detoxifying effects. He had clearly decided on the train set. Of course! Doctor Tiago would never fob me off with tokens. We were all back together again. But, actually, there wasn’t much of an interval between this smile and Doctor Tiago telling me that I had motor neurone disease. Or not that exactly. Not that I had this disease. Just that it would be impossible for it to be anything else. I like that. It’s perfect manners when handling bad news. It’s not that it’s the thing. It’s just not all the other things.
I had placed motor neurone disease on the same shelf in my brain where I keep the phone number for Dignitas in Switzerland. This was on a high-up shelf in the outhouse with a broken tricycle and an unused bread maker. Immediately prior to receiving the diagnosis I had been slouching in the corridor. I was holding my phone and browsing inanely through online drivel with my thumb. This was just a few moments before.
When I started crying my head was parallel with the desktop. The sob I experienced was just like the deep vibration of a kitchen tap after the mains water is turned back on. A series of metallic shudders through my spine. A chug. A gurgle. And then water. I remember looking up at Gill. She was crying more gently as she looked down at me. I was over her knee by this point, with my neck arched up towards her. And on her face was the shock of sorrow. Not for herself. For me. I will never read a face like that in a moment like that again. It’s a wonder to know, that with all the muscular variation the human face is capable of, some permutations are as unique as fingerprints.
We said our goodbyes. Doctor Tiago came out from behind his completely inappropriate desk. His hug confirmed that he was indeed my uncle. I hadn’t been imagining this at all. I’m glad that I was diagnosed in Portugal. To be amongst these warm-hearted people. In most other places, doctors seem to belong, or aspire to belong, to the notion of a particular caste or stratum. But doctors in Portugal carry themselves like people who just walked in off the street and put on a white coat. Which is what they are. Which is exactly what all doctors are. It’s just that doctors in Portugal appear to know this.
In the corridor, Gill and I ran into Paula, the medical secretary of the neurology department. She’d been expecting us. She stood there in her white coat, with her eyes moist, and her hands clasped as if she was cradling a young chick. I owe a lot to Paula. If it wasn’t for Paula, I’d still be limping around the ground floor of Coimbra hospital, somewhere near the impenetrable network of lifts. The Portuguese health system was a little tricky for me to understand. But I had Paula, so I didn’t really have to understand anything. By that time in Portugal, after my wife and boys, I’d talk to Paula more than anyone else. She’d push me around the hospital in a wheelchair and drop me at the train station after appointments. For some weeks Paula had been perfecting her version of Leonard Cohen’s ‘Hallelujah’on the ukulele. She’d been sending me various versions as MP4 files. And now I understood. She’d known about my disease long before Doctor Tiago. I later spoke to her about this and she confirmed my theory to be partially true, but not entirely. In fact, she said that Doctor Tiago knew; he just didn’t want to admit he knew. It made him feel too sad. Maybe he was better at not knowing than I’d given him credit for. After hearing this, he went up even further in my estimation. I already loved him; there wasn’t much further up for him to go.
‘You will suffer. You know this, right?’
We’d rented a very old car whilst in Portugal and it had a cassette player. We just regarded it as an artefact and told Tom all about this strange device. And then a month into having the car, Tom was fiddling with the buttons and out popped a cassette. Of fado music. It had been raining all winter and we’d been driving around in the rain playing it ever since – unaware that our car had been thoughtfully preparing us for tragedy. So it felt like we understood this moment. This moment with Paula.
‘It will be hard, you know? It will be very hard.’
Paula dropped the tiny chick on the grey-tiled floor.
‘You must be happy, Gill. Oh, Gill, you must be strong!’
She cupped Gill’s face in her hands.
‘Because Joe will be handicapped. His body will stop working. Almost completely. You will see.’
She was a little closer now. Almost nose to nose.
‘He will die. You know this, right?’
She took both of us by the hand.
‘You must love life. You must be happy!’
As Gill and I staggered along the concourse I felt I had to try and mention this thing about Dignitas. Or something like that. I’m not so brand-orientated that I would have insisted on Dignitas. I needed to admit to this general idea – to spit it out – but it felt like the mains had been turned off again or someone’s boot was stuck in the pipe. I was trying to talk. I was trying to cry. My hands were on my knees. I was trying to communicate but only spit came out. A thick, gloopy spit. Down my shirt and all over my trousers. And I was sweating. I was trying to say what I had now just remembered. My Dignitas plan. But Gill was pulling my arm, as if she thought this was not a plan but instead something to do with the piece of tarmac I was standing on. So that if she could pull me away from that spot I would be OK. How unlike tourists we must have seemed in that moment. Pulling and wrenching as doctors and porters and patients in hospital gowns parted around us.
*
Really bad news is a little like medieval weaponry. It isn’t precise like a bullet or a machine-sharpened blade. Part of its brute effect comes from blunt power, so that extensive collateral damage is caused to areas already weakened for a variety of other reasons: areas that are sometimes quite a long way beyond the originally intended location. In this sense, they both destroy and clear away. They bring forward endings in a more timely manner – tidying away what had already grown weak. And I think it’s not possible to be properly aware of such quiet, broad-reaching devastation, so that it’s only discovered later when performing an innocuous task – like reaching for some tinned tomatoes in a cupboard – and you notice some white part of the bone revealed in a place you would have never expected it.
I couldn’t have known it at the time, but a lot more became visible to me in the days following my bad news, and I don’t think I’m alone in being someone who walks around with all kinds of weaknesses that go back many years – almost as far back as it’s possible to go in a life. In the hours after Doctor Tiago diagnosed me I would not have been aware of this, of the soreness and the calcification that had existed for all this time. And that’s why the very worst kind of bad news – whilst seeming, of course, really bad – can also perform the same function as a brace applied to wonky teeth, or metal pins through the spine. It can take some time for its brutal benefits to become clear.
When I now look back at that early devastating comprehension of my condition, I see that it was necessary, in a way, to dig and scoop away at an area that should have long ago been knocked through – like a section of blown plaster after a leak; as if this wasn’t simply bad news, or advanced notice of a premature end, but also a long-overdue resolution.
*
I spent five days crying. There were intermissions when I could build fantastical, ornate wooden tower blocks with Tom. These periods enabled fresh fluids to be taken in, so that I could begin again at night-time or during the school day. During those nights I awoke several times to cry. Often I had just been dreaming of the diagnosis. And then, sitting up in bed, the expectation was that the day would flow in to dissipate and dissolve. When it didn’t, it was as if dreams had lost their function. It was an unschooling of the ways in which bad dreams are meant to be dispersed. Sleep was diminished. And waking was never quite achieved.
I had no previous facility for crying. No track record. I think I could take the image of Doctor Tiago in his white coat and replace it with one in which he wears a white hard-hat. Tiago the Engineer, overseeing a vast hydroelectric power plant. He had pressed a button or pulled a lever, because it began in that moment. It swelled up somewhere from a series of large, loosely fitted metal parts. So that I was just a vessel. A pipe. A tap. A drain. I was not the beginning and not the end. Something is running through me. I’m in the car or lying in bed and all the metal parts of Tiago the Engineer’s vast hydroelectric power plant burst and split, and then the water comes.
I now realize what Doctor Tiago and the other neurologists were doing. It was quite an artifice. I admire it now because it helped me a great deal. They dispersed my fears with their wonderful array of smiles. They needed me slouched against walls, bored, complacent. Because if I had been led incrementally towards diagnosis, I would never have gained entry to this vast hydroelectric power plant about which I had never previously been aware. They have to lead you towards it while simultaneously keeping it outside your field of vision. And suddenly, there you are, with other people who’ve made the same journey. Other recipients of this sudden violence. Perhaps they feel it in other ways: as a conscious fall from a high place or perhaps a sense of having misplaced something important, like the whole universe. In this place of vast latent power and unfathomable depth. And without this place, or outside this place, loss is never really felt. Outside, loss is dispersed, and becomes a kind of unseen haze. But here, down here, it’s felt. I found this out. Down here there is nothing but feeling it. The power of it.
I can walk for miles in this underground cavern and remain as I am. And I do. But up above my children are growing older. They’re living a life with Gill in a place I don’t know. And all the time I can see them from here. A life that works. The boys older. Life happening. I’m not getting closer to any of this. It just gets smaller and darker and fainter as it disappears into the distance. And then the water comes. And then it comes. And it does.
*
I was eating scrambled eggs, watching the milk pump out from Tom’s mouth as he spooned up his cereal. It was a natural and effective overflow that meant he didn’t have to regulate the amount of milk or cereal he was shovelling in. Gill had her back to us, making packed lunches, and over Tom’s shoulder I could see Jimmy trying to mount a sofa that was several hands too high for him. I got up and went through to the bedroom to lie down on my side. I pulled the pillow into my bottom lip and squeezed my face together, wringing it out, so that the pillow became damp around my eye socket. I could hear Gill telling Tom to get his shoes on. Then my diaphragm started chugging. It felt like hiccups but was more rapid and rhythmical. More like a pulsing. I rolled over on to my back and pulled the pillow into my teeth. There’s an ambient, wheezing noise that accompanies this kind of sobbing – a layer of treble that makes it sound as though I’m pleading for some kind of mercy. I had a toy once that made this noise when you turned it upside down. It was supposed to sound like a cow, but it was more like a smoker’s wheeze. I was tucking my knees into my chest and breathing more steadily now. I heard a door open in the next room, and Gill was stating something assertively. I knew that she was gathering up Tom’s schoolbag and I wanted to say goodbye. I could tell the episode was almost over and I sat up on the edge of the bed. This was the functionality of tears that I became used to in those five days. I knew I needed a moment after the exertion, like knowing when I need a cup of tea. I had my hands on my knees and looked around. Nothing had changed. Then I went back into the kitchen.
When the crying came at night, I’d be squeezing the duvet in my fists and thinking very acutely of the physicality of Tom and Jimmy. It must have been something close to focused meditation because I would imagine their current form, then focus in on the changes that I imagined would take place in their bodies in the years to come. I would imagine the lengthening of Tom’s lean legs and the broadening of his V-shaped jawline. I imagined the fine, fair hair that would appear on his face. I imagined his length and strength and the cheekbones that would one day underline his gaze. With Jimmy, I love and marvel at the width of his feet and hands. I imagine him continuing to be broad and solid. His shoulders would thicken and his jawline would be rounder than Tom’s. I imagined him shorter than Tom but more burly. In Jimmy’s case I also felt guilt that I knew his physical shape and form, but that he would never remember mine. He would often nap on the bed with his chin cupped in his hands and I would talk to his sleeping body and tell him how sorry I was.
Over the Portuguese winter it rained continuously in the mountains, and the eucalyptus that burnt all summer now smelt green. Descending the mountain, we’d wind down through these forests and the warm microclimate inside the car created ideal conditions for precipitation. Any thought or awareness or reflection simply switched it on. The road snaked and seemed to further dislodge all the salty snotty liquid within. I could have leant forward and found the button on the dashboard. And it would come, rising up through the pipes pooling inside my head. Then I’d hit the button again and it would stop.
During those days it felt like some figure was cutting around me with a pair of scissors; moving me with the blades to cut close and accurately. And as the paper turned, more of me would drop down and I knew that it wouldn’t take long for the scissors to have made their whole way round. I would be imagining the boys and Gill. Living in a place I might not know – a life that worked but which was alien to me. The boys older. Life happening. And I was looking at all of this from the outside. I clung to Gill, but I saw her and Tom and Jimmy connected by something that I wasn’t. They seemed somehow in place and as they should be. And though I was holding on, I wasn’t connected in the same way. Until this time I’d just assumed that we were formed from a single piece. That something like this could never happen. A little family of four pinched into human form and then hardened. Set. Finished. So that one figure could never be the person outside observing all these parts. That it would necessarily become a complete form made up of three figures is one of the things I discovered in this cavernous place. This is a concept that I looked at and looked at and looked at and looked at again and again, and I could not understand it. And all the moments that had upset me in the past were in one place. And this moment of upset was in another place. It was an entire physical feeling. And when it came my body curled inwards like a fortune-telling fish on a hot palm.
*
When the five days of tears came they filled the spaces I had never known. Unused rooms. Forgotten rooms. The places where I might have been. It crashed through barriers and washed away impediments like they were blades of grass. It carried me away – it carried everything away. I bobbed on the surface of this rising, moving water, my arms outstretched – a little man being carried away. There was no need to call out; there was no other way to travel; only water. Nothing was left behind. No selves in tiny corners, no scary thoughts left buried. A bowl of chocolate ice cream, which I ate when I was five, went by upon the surface of the flood. A teacher half remembered, a scrap of brown carpet, the car I crashed when I was seventeen, a painted wooden block – all bobbing in the water along with me.
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