MONTY MODLYN

Monty Modlyn hosted a late-night phone-in on LBC in the 1970s. He was warm, cockney-cheeky and consistently upbeat with callers who rang in.

‘Monty, I put all the washing in like it said to, and it came out proper mangled. Ruined it was.’

‘Oh, sweetie, I’m really sorry to hear that. What’s your name by the way, my love?’

‘June.’

‘June, that’s a lovely name, and a lovely month. Now, June, dearest, and I’m not trying to be cheeky, but maybe it’s a chance for a new wardrobe?’

‘Oh, I don’t have money for that. Not since my husband went and everything.’

‘Oh, June, I’m so sorry, dear. When did he die?’

‘Oh, he’s not dead, Monty, he went off with my sister.’

‘Ah! Definitely time for a new start, my girl: out with the old and in with the new, as my mum used to say.’

‘Your mum was right, Monty, I’ll buy a dress in the sales tomorrow. Why not?’

‘Yes, why not, my love, and you take care and show a bit of ankle when you can.’

 Den, Paul and I were fourteen. It was New Year’s Eve, 1975. We were in Paul’s bedroom listening to Monty’s programme, taking the mickey out of him and the callers, and shutting out the world around us. Even though I giggled inanely, I was secretly seething – how had it come to this? Inwardly I longed for better times, imagining other pupils from school in reverie, dancing and necking the night away.

The numbing comic mediocrity of that night mirrored the years to come in my twenties and thirties after I was diagnosed with myalgic encephalomyelitis (ME). A sentence taken in relative solitary, life happening elsewhere, ceaseless days of drudging melancholy enlivened by snippets of humour and companionship, a life stubbornly endured in the hope of better times to come. 

When I first became ill at twenty-six, my friends clubbed together to send me, like an Edwardian lady taking restorative waters, for respite cure at Tyringham Naturopathic Clinic. The residents were moderately wealthy (it wasn’t Champneys: here was faded grandeur), often overweight and emotionally fragile, mildly invalided, and occasionally included elusive celebrities seeking a bolthole from the world. A TV star was recovering from relationship upheavals in a suite on the top floor when I was there, and only appeared occasionally at breakfast in a purple chiffon dressing gown and giant sunglasses, to peruse and touch various fruits in a bowl before rejecting them, then disappear up the stairs with a steaming cup of hot lemon water trembling in her hand, her famous red hair aflame and pouring out behind her. 

In the ornate gardens, surrounded by statues of Greek gods and marble nymphs, lay the longest man-made pool in Europe. Sun worshippers sitting around the pool, mainly female, average age sixty plus, were sometimes drawn to the presence of a frail young man in a swimming costume lying by the water but never getting in. I was that young man, and was soon being mothered by various older women, and enjoying the attention. Betty told me about her daughter, who had recently been diagnosed with ME, then also known post-viral syndrome (I never liked that word, ‘syndrome’). ‘That’s what you’ve got, I stake my life on it!’ she said excitedly. ‘And what you need to do is give in to it!’ 

Tyringham was built over powerful ley lines, and attracted shamans, white witches and spiritualists. Betty’s friend, a small nervous woman with beetle-black eyes, declared that she was a healer and told me I was a healer too, but that I was too open, and my energies were being drained by negative forces. ‘Protect your centre with golden light,’ she said, her hand drawing an invisible circle around my bare stomach, ‘particularly when your mother is around.’ 

Not all medics believed ME was a real illness. Fortunately, my GP was more enlightened. He’d read about the condition and when I saw him after Tyringham, he offered the same diagnosis as Betty. The diagnosis, however contentious, would offer some temporary protection and sanctuary. There was a problem, though. I remember an Alan Bennett play shown on television when I was about fifteen. A bourgeois party was taking place in a grand house. A well-coiffed woman strode in and declared with gusto, ‘I have cancer!’ and, after initial silence, received a smattering of polite applause. Betty was well meaning but also triumphant in her diagnosis, but ME was nothing to crow about. It lacked real legitimacy, no lasting badge of honour would be awarded for fighting it or staying the course, and the controversial diagnosis soon became a curse. 

Advice for getting well was so contradictory. Rest or exercise? Fight or give in? Live with the condition or live despite it? Any kind of exercise, even gentle walking, soon exacerbated muscle pains and weakness, but should I carry on and do it anyway? Later on, medics and therapists suggested carefully graduated exercise as a possible way forward. But for someone whose energy had long gone, and who was impatient and wanted quick results, their strategy was near impossible. In any case, I rapidly found that I could do very little except lie down and fester, and dwell on my symptoms. Even reading was too tiring, my eyesight and brain fogging after a few lines. I was confused, berating myself for not trying hard enough to get well but fiercely hurt and defensive if I was disbelieved or if someone intimated – as a few did – I was faking. OK, bring it on: Pretentious. Moi? Paranoid. Who’s been talking about me? Hypochondriac. Maybe? But if I were, couldn’t I also be ill? Don’t know. Well, fuck you, then!

I left my job as a student nurse, and vacated my room in a co-op in New Cross to go back to my parents and their tiny flat in Haywards Heath; my bedroom big enough for a single bed and a small CD player. I disappeared into a stupor, lying in bed for maybe twenty-three hours a day for the first six months. Ethereal voiceless music, glorious cascading waves of kora strings, hoots and rumbles of sixties, spaced-out Miles Davis, or deranged celestial whoops and enchanted gobbledegook from the Cocteau Twins’ Liz Fraser were a constant, sometimes soothing, occasionally unhinging, companion. My mind would be transported to somewhere else, high, tripping, heat through my temples, my body left for dead on the slab. 

I had no choice but to try and sleep my way through, getting up to eat with my parents in the evening, and watch a little television. Dennis Potter’s Singing Detective took me over and became a totem for my submerged psyche, the convoluted detective plots and blackly comic forties hospital crooning, the anti-hero Marlowe’s hot peeling psoriasis skin, his diseased erotic dreams and surreal cinematic suffering, all mingling with my own confused imaginings and disconnection from the real (healthy) world. My parents loved it too (echoing our shared enjoyment of Potter’s Pennies From Heaven when I was a teenager). We laughed at the incongruity of uptight doctors and nurses dropping bedpans and stethoscopes to suddenly tap dance and lip-synch to Bing Crosby and the Andrews Sisters (‘Don’t Fence Me In’ carrying particular resonance), Dad smiling over at my glassy-eyed infatuation with Marlowe’s nurse played by a young, sexy Joanne Whalley. 

Listless days in a gloomy half-light were often accompanied by cassettes of books narrated by friends. These included a painfully arch reading of Gertrude Stein’s Blood on the Dining-Room Floor, and my friend Beatrice’s feat of endurance reading, Carson McCullers’ The Member of the Wedding, in a strange, shaky Southern States drawl, where sometimes she was so tired it became impossible to decipher what she was saying. Words and phrases got lost along the way, but the message came through and I was hooked, twelve-year-old Frankie’s story resonating with my own sense of longing and despair. Frankie is bored and trapped by life and becomes obsessed by her brother’s wedding and with his bride. Beatrice’s drawled narration created a strange atmosphere, another level of recognition and attachment to Frankie’s predicament and spirit:

‘Because she [Frankie] could not break this tightness gathering within her, she would hurry to do something. She would go home and put the coalscuttle on her head like a crazy person, and walk around the kitchen table. She would do anything that suddenly occurred to her – but whatever she did was always wrong … having done these wrong and silly things, she would stand, sickened and empty, in the kitchen door and say: “I wish I could tear down this whole town.”’ 

Another friend, Tom, sent a tape of Chinese meditation and breathing exercises, narrated in his deep, resonating actor’s voice. From the poem of Fang Sung Kung, Tom spoke evenly and encouragingly:

With a high pillow I lie on my bed;

I keep my body comfortable and relaxed.

I breathe in and out naturally,

And say the word quiet and relax silently.

I think of the word quiet as I inhale,

And the word relax as I exhale. 

I never got near to the end of any tape before sleep set in, but the familiar voices were welcome, and my friends’ acts of kindness made me feel that I wasn’t alone and helped keep me going. 

I also made tapes for them, endlessly stop-starting cassettes, jamming together ‘record’ and ‘play’ buttons, trying to find a feel, a merging flow and theme to the music, carefully nuanced to fit the mood and taste of each friend, tape boxes scattered across my bed, my head zoned in and frazzling. I was moronically obsessive, barely able to talk, let alone take a break for the toilet; nothing mattered more at that moment, and each tape completely exhausted me. Sometimes I’d finish only to find the important final track wouldn’t fit (days before digitised music and cue times) so I’d start again, taping over, scribbling again over my cramped spidery writing on the index cover, editing out the guilty overlong track to fit in two shorter ones: Fela Kuti’s expansive polemic ‘ITT’ giving way to Leonard Cohen’s ‘I’m Your Man’, neatly segueing into Al Greene’s ‘Belle’. Damn, J. J. Cale’s ‘Magnolia’ would have worked better. Start again! 

Being ill and marking time at home was familiar fare. I’d experienced fevers and pneumonia as a young child in Mombasa, a quiet shuttered room (waiting for my parents to come in and check on me), delirious daytime sleeps held in the safety and relief of cool white sheets, then repeated colds and flus throughout puberty and into my teens. 

At school in Sussex, I missed a day a week on average, often Thursdays (double chemistry), occasionally feigning symptoms to encourage sympathy and more time off. I once heated the trusty family thermometer in a mug of tea. The mercury shot fatally off the scale. When I retrieved the thermometer, its end burst and mercury dolloped onto the floor, separating then re-coalescing, then separating again as I tried to scoop it up with a spoon. A line of small silver balls slid under the fridge and I started to panic, fearing mercury was as poisonous as arsenic and as explosive as plutonium. 

In the early stages of ME, I contracted pneumonia and was sent to Guy’s Hospital. After a week I recovered enough to go onto the ward rooftop terrace. It was like a World War Two TB sanatorium garden, only high up and surrounded by concrete and glass: young men in regulation striped dressing gowns flaked out on deckchairs, basking in the sun, some with eyes closed, no longer moving, as if they were already dead, others chatting and playing cards. I shared a cigarette with a man about my age, sitting on his own. He showed me fine, hard, grey pellets running under his skin and along the veins on his arms and legs. 

‘I tried to kill myself by swallowing mercury,’ he said. ‘It didn’t work, obviously.’ He saw I looked relieved. ‘But now they’re saying they can’t do anything. The drugs to reverse the mercury’s flow haven’t worked and sooner or later the mercury will collect itself in my heart. And that will be that.’

‘Jesus!’ I said.

‘Exactly,’ he replied, with a kind of grin. 

The drag on the cigarette made me dizzy and breathless. I gave my pack to him. ‘Thanks, and don’t worry, it won’t be wasted, I’ll have plenty of time to finish them,’ he said, lighting up another. He added that death would be agony, as his liver was already toxic. Yet he sounded so matter-of-fact and gave an ironic ‘thumbs up’ when I left him. His slow, monotone voice haunted me for weeks after I was discharged.

When I was a child, Mum had enjoyed my company when I was off school, sometimes colluding in my illness to keep me home. She loved our slow, giggling dances (as did I) when I returned from school for lunch, a frozen Birds Eye TV meal in the oven, Frank Sinatra’s ‘Cheek to Cheek’ circling on the turntable. But when I arrived home from Guy’s Hospital, she wasn’t there. She’d suffered a breakdown and was recuperating in a small psychiatric hospital in Hove. We visited her in her dormitory, a row of pictures of me, my sister and my nephew, arranged on her bedside locker, and while we were there she never stopped crying. But she had close friends in hospitals, a strange boarding-school camaraderie, someone to look out for her, and an old woman with long, wild, grey hair came over and hugged me and said she’d been praying for me too. Mum looked on sobbing, and said, ‘I love you so much but I’m an awful mother, I should be there for you!’ 

On her return, she wanted to smother (the extra ‘s’ is mine) me, my illness relegated and merged into her own anxieties, disaster storylines and maternal guilt; the tragedy of the perfect son cut down by a sickness no one understood, and a pitiable mother who was unable to help. After her drugs kicked in, she resurfaced and did her best, an ally of sorts, and we tried to help each other. But Mum’s melancholic fateful take on things was dangerous. I tried my best to be practical and positive about my health – it was the early days of my illness, after all – but a heroic yet catastrophic narrative was sometimes hard to resist. I put my own dark comic spin on my predicament, lacing my illness with stories of slapstick medical mishaps and a surreal gallows humour. The comedy of misfortune sometimes devalued things, pulled the rug from what I was going through, and helped cast me as some kind of hapless idiot. But if I was serious and told things how they really were, I worried that I came over as needy and overly intense: one extreme to the other with nothing safe or easily digestible in between. 

Mum would wait by the front door of the flat, jumping at it as soon as Dad turned the key to come inside. A catalogue of woe and recrimination would follow, Dad fending her off and walking breathless down the corridor, his energies spent by the time he looked in on me. Once he stopped me in my tracks (just as the plaintive, lonesome whistle was about to blow): ‘I’m sorry, I know you’re going through it, but I can’t listen straight after your mum has had me. I’m tired, but I’ll come in later and you can tell me how you are then.’ I understood but my eyes smarted with hurt. I’d hear him go into the kitchen where Mum waited with an ensnaring cup of tea, and she was off. After a while came a pained roar: ‘For Christ’s sake, just shut up!’ My own voice quietened in solidarity with his plea for silence. 

My sister was worried that Dad coping with me being ill at the same as dealing with Mum’s depression might kill him. The guilty family story of Dad’s heart attacks following a marathon weekend of summer gardening in 1974 still resonated. I remember his flagging energies on that Sunday, regimental lines up and down the garden, the aggravated, guilt-inducing sound of the mower, and his obsessive impatience to get it all done in one go. We determinedly clung on inside, trying to drown things out with the TV (‘The Big Match’) turned up, feeling bad but also staking our right to relax, to be lazy and not help, justifying inaction with the rationale that it needn’t all be done in one go. 

Dad didn’t die, but after his heart attacks, any time he was late home from work would have Mum wringing her hands and saying, ‘He’s gone, I can tell, we’ve just got to get on with it.’ Now my sister was worried that my illness and its demands would finish him off for good. Life repeats itself, and, like Dad, I have no patience and rush headlong into things, hoping my fragile energies will carry me through. Moving house, I’ll frenziedly pack into the small hours for days before, and then have the new house (magically replicating the one before) settled, boxes unpacked and flattened for recycling, pictures hung, kids’ toys stacked, books and CDs on shelves, only a couple of days later; and then I let go and collapse.

It’s always been my choice to push myself and I’ve never listened when someone said ‘slow down’. Not much changes: I’m writing about past illness while I’m ill with flu, flirting with reality, those loose shadowy sentences and opaque turns of phrase. I’ve also been nursing my eight-year-old, who’s had the same flu, while writing about myself being off school being nursed by my mother. 

My first venture out of my parents’ flat to an ME sufferers’ group was new and yet also horribly familiar: the Sussex village church-hall setting, resourceful flower arrangements (‘Can they really be plastic, Vicar?’), Women’s Guild posters, Round Table litter initiatives, the generously flowing teapot, Barley Cup (I hate Barley Cup) and Fairtrade instant coffee, homespun shawls for sale for use on frozen, immobile legs. A well-meaning, parochial Archers vibe I’ve always recoiled from. Then the sight of mummified limbs bound in the same cheerfully patterned shawls, sticking out from wheelchairs parked up in the front row, overbearing, anxious parents waiting behind to ride their kids’ chariots like Ben Bloody Hur, young women crumpled in the chairs, their deathly pale faces, disarmingly insipid smiles and angry eyes, coiled in on themselves but wanting to shout: ‘Understand me, I’m sick, you fuckers!’ 

Speakers talked about gaining acceptance, applying for disability benefits and where best to buy natural sheepskin pads to prevent bedsores. It was overwhelming, the air full of desperate coping, defeat and hurt, and I wanted to escape. But I listened, my lips slowly separating into the same insipid smile, the hint of a grimace; and next meeting I’d be wheeled in on my own wheelchair. 

My rickety collapsible chair was hired from a local charity and was too small. I hated it, and I hated being in it. I felt self-conscious in public, though occasionally I indulged in the mystery and fantasy of a heroic young man (Firefighter? Soldier? Or poet?) tragically struck down in his prime.

‘Oh, it breaks my heart to see a fit-looking young man like you in a wheelchair.’

‘I ain’t fit, lady, but thanks for your concern.’

‘Oh, you lovely cheeky boy!’ 

I could stand up unaided and walk a short distance, so the wheelchair was used for journeys over a few hundred metres, to avoid exhaustion and overexerting my muscles. The wheelchair was hard to push and I’d sit rigid, my muscles tensed, my eyes closed (wishing it all away), feeling guilty for making a fuss, always questioning if I should be in it at all: cue the accusatory column (‘Monsters Amidst Us’) on page seven of the local paper with a picture of a perky, seemingly able-bodied driver climbing out of his Ferrari, which he’d just parked in a disabled parking space. Of course, there were many reasons why his sports car might have qualified for a disabled permit, weren’t there? 

But tongues like to wag, and if I stood up and miraculously walked from my wheelchair, I confounded expectations. When my friend Beatrice and I arrived on a windy day on Seaford seafront, we couldn’t stop laughing, as, first, we attempted to lift the wheelchair out of the boot, and then fold it out and reattach its missing wheels. She pushed off and a front wheel fell away and I tipped forward onto the floor. We were in hysterics. An old couple in a car visibly tutted, and the woman tapped angrily on her passenger side window as if we had transgressed some convention of disabled behaviour and use of mobility equipment. The following week’s page-seven headline could have set the letters page on fire. 

At my third local ME Association meeting (the second meeting, attended in my new wheelchair, had passed in a fevered blur) I met Adrian. As if attending an old-fashioned introductory agency for the enfeebled, an older woman spotted we were both men and both young, and pushed our chairs together. We smiled shyly at each other, but I detected a welcome energy in his obvious discomfort at being there, a glint of red and anger in his eyes. We ended up talking about music rather than being ill, a mutual way of escaping, and would meet later to swap tapes we’d made for each other, my esoteric tastes for relaxing to kora music and Philip Glass less to his taste than Public Enemy and the wonderful testosterone-filled Soweto beats he made for me. He was new to the game, and I was cast as an unwilling veteran, ready to show him the ropes, but we both preferred to hide from view and neither of us would attend a meeting again. 

I hunkered down at home, endlessly sleeping, numbing pain and unwanted thoughts with the prescribed opiate DF118: a low-key medicinal heroin, a soft landing, a warm cave to crawl into, to lie up and wait. Despite its unfortunate effect of bunging me up, it was insidiously addictive and even more soulful than the Valium I used to steal from Mum’s handbag when I was a teenager. 

I felt so ill and alone in my illness that sometimes I fantasised I might not wake up from a sleep. More often, though, I went to sleep wishing I’d wake up feeling miraculously better. But each day was Groundhog Day and I woke wrung out, a heavy head on the pillow, bones and muscles aching, brain slurring, my vision blurred at the edges. 

ME took away my ability to read books. Ironic when I had so much time, but a page would finish me off, words jumbling, my eyes dropping between the lines, white noise, sugar-melt between the letters. Brain scans at St Bart’s and St Thomas’s would later show that there was neurological brain damage, reduced blood flow at the brain’s stem affecting various cerebral hemispheres and cognitive functions. While brain stamina was reduced and the parts of my brain that took in and utilised information were compromised, the sections of my brain to do with imagination became increasingly stimulated and warped: endless fitful, drooling daydreams and deep REM sleeps full of surreal colour and vibrancy. As soon as I closed my eyes it was like I was tripping, a ready tap of Kool-Aid to turn on and dive into. The escapes were welcome and made up for my inability to take flight in the books still piled beside my bed. They became less taunting and more comforting, the few familiar ones stimulating random flashes of memory, the unread ones offering infinite possibilities and leaps of imagination from their titles alone. 

The ME Association magazine clanked through the letterbox each quarter. I eyed it warily: the crude War Cry font and cheap paper (before some ME sufferer’s celebrity parents raised its profile and turned it glossy), the black-and-white cover with a young woman in bed, curtains drawn, numerous pill bottles scattered all over her bedside table, defiantly smiling up at the camera from a chasm of pillows. There were some useful advice columns, rallying pleading letter pages, doctor and therapist trials and regimes, but just flipping through it made me relieved that I couldn’t read it properly. Its prosaic drabness, its well-intentioned mantra to gain medical acceptance and its passive-aggressive need to constantly justify and defend the illness filled me with a sinking feeling, drowning in the maudlin hopelessness of it all.

I tried diets suggested in the magazine – the worst and most debilitating being the anti-candida diet (no yeast, no sugar, no wheat, no dairy, no alcohol, no fun) – and I kept to each of them religiously, hoping they’d get me well, but somehow knowing that they wouldn’t be enough on their own. In desperation I tried healers, some good, some bad, but nearly all well meaning and doing their best to help. In the right hands, a stranger’s light touch over the body was deeply relaxing – skin tingling, breathing slowing down, purple hues through the eyelids. In the wrong hands? Beware the self-proclaimed weekend Reiki Master, because neuroses can also be transmitted through touch! 

I learned to compartmentalise my illness, my expression of it, from everyday life. It was safer to unbuckle and let go with a therapist or healer, but less so with people I was close to. If the phone rang, and I was well enough to get up, I’d seek privacy by taking the phone into my room, my reactions initially slow, as if I couldn’t remember how to get the words out. Then I’d warm to the task, adrenaline (a sickly, destructive drug in my case) coursing through me so I’d suddenly be wise-cracking, surreally making light of things (‘Yes, the wheelchair wheel came off and I practically catapulted into the sea’). My strained laughter echoed how Mum often behaved, switching from the darkest depression with us at home to suddenly screaming with laughter down the phone. Then the light abruptly went out and I was punch-drunk, slumped against the ropes again. 

A breakout every few months from the tedium of diets and illness was to really go for it and binge. Vodka! I couldn’t tolerate a drink for years, in fact a sip of wine or beer completely exhausted me, but sometimes I would escape to Tom’s house in New Cross and drink a Stolichnaya from the freezer in one sitting, my rabid energies unleashed, singing songs at the top of my voice, clowning and yelling it all out. 

After a session when several bottles had been drunk, Tom’s housemate Ben rallied enough to drive me for my appointment at the London Homeopathic Hospital on Great Ormond Street. Hangovers blissed out everything; no responsibility or need to face up to reality. The car meandered, my nausea turned and rose, and I felt like I was parachuting, enjoying the gravity pull, out of control but somehow safe and not about to die just yet. In the toilets my piss bubbled and steamed, the cubicle taking on the smell of a doss house. When blood was taken, it spilled apologetically from the side of the needle, watered down and thin, as if from a faulty optic. The phlebotomist shook what frothy pink liquid was left in the tube and said there must be something wrong with the syringe because blood didn’t normally look like that! Alcohol, with its false disinhibiting adrenaline, had carried me like a small boat riding excitedly across the waves, to later smash against the rocks and return me waterlogged, retreating into bed for weeks to try and recover, dreaming of the next time. 

Beatrice loved visiting me at my parents’ flat. My illness, Dad’s failing health coupled with Mum’s depression, the juxtaposition of a mahogany carved chest, African sculptures and fine Persian rugs crammed into our small flat, spoke to her of faded colonial grandeur, of a family tragically on the wane. Mum came alive when certain people were around and Beatrice was in her thrall as she spun sad tales of her cruel Indian convent, of escapes to the thruppenny seats in the post-war West End. In her later stories, I was cast as the poor gifted son, always destined to be ill. Beatrice smiled fondly at me when Mum said this and then laughed sympathetically when I tried to dilute the atmosphere by making jokes. 

Beatrice told me I should write about my illness, the post-colonial malaise that afflicted us. ‘That’s your story, that’s what you should tell,’ she said, and here I am, finally well enough, writing it down.

And Monty would be proud of me were he still alive, squashing any doubts about baring myself in public:

‘Everyone has a story to tell, darling, so why not tell yours?’

‘It might not be interesting or relevant to anyone, Monty.’

‘Stop with all that, just tell it like it is and let the readers decide, and while you’re about it, show a bit of grit, or ankle if there’s any to show, people tend to like it.’

*

Monty Modlyn was published in 2021’s ‘A Wild and Precious Life – A Recovery Anthology’ wonderfully edited and curated by Lily Dunn and Zoe Gilbert.

it can be ordered here https://unbound.com/books/recovery/ and here https://www.amazon.co.uk/Wild-Precious-Life-Recovery-Anthology-ebook/dp/B08GXBKQ16/ref=cm_cr_arp_d_product_top?ie=UTF8