There are different types of pain, for sure.
Osteoarthritis announced its arrival through a pair of scarlet, kitten-heeled winkle pickers one day just after my 19th birthday. A burning sensation in the tendon at the back of my foot. At 19, that kind of pain is almost always temporary, rarely alarming. I put it down to the shoes and that uncomfortable sensation subsided, a minor inconvenience.
Over a decade and many subsequent years of pain later, I am recovering from my first total hip replacement. The tipping point: in May last year, my right leg suddenly seemed to become an inch longer than my left, causing a debilitating limp. Depending on who I spoke to – the chiropractor, the GP, the osteopath, the physiotherapist – the culprit was either my left leg which had finally worn down and shortened, or my right leg that had hyper-extended in an attempt to compensate for the damage in my left hip joint. No one seemed exactly sure, but whatever the case, in practice it meant that the shortest of journeys became gargantuan missions. A lengthy trek to reach a different tube line within a single station (worst offenders: Baker Street, Green Park, but most of all the Satanic maze that is the new Kings Cross) or any kind of uphill walk was overwhelming; standing up from a too-low seat, excruciating. I started needed assistance at airports (though I can’t lie, riding in the golf buggy as you zoom past your co-travellers, arduously trudging, is super fun. I sometimes waved). But my energy was sapped, and the dull ache in my legs at night began to make uninterrupted sleep a distant memory. It felt more than a little ironic that I was in the midst of working on a performance project with the Royal Ballet (albeit singing on stage, not dancing!), at a time when it was often a struggle just to make it from my home to the rehearsals. My horizons, already narrowing over the years, became ever smaller.
I had been vaguely diagnosed with some kind of bone condition at the age of 12, but I’m almost certain I wasn’t warned of serious future consequences. My mother had taken me to Great Ormond Street Children’s Hospital, as she was worried about my rate of growth, where I was checked over by a consultant. (This was an odd concern on my mother’s part, considering from her side at least, we’re not a tall family – my grandfather clocked in at 5 ft 4”). “Growth hormones might be an option”, he said, though I retorted I’d rather move to Japan where my short stature would go unremarked, than take any of his nasty chemicals. Definitely the burgeoning obnoxiousness of a pre-teen, but I also remember finding this doctor arrogant and insensitive, so perhaps it was justified. He finally diagnosed me with a disorder of some sort that meant I was unusually flexible (which explained my favourite party trick: a jump into the splits, Fame style). He advised that I should avoid doing stuff like falling off horses and protect my vertebrae (‘no wrestling’). Can do, doc. I grew to a respectable 5 foot nothing, and we thought little more of it.
Daniel and I, aged 12 & 13
By the time I was 19, anyhow, there wasn’t much room for an additional, unwell child. Family life at that time was chaotic, dominated by the moods of my beloved, but increasingly psychotic brother. Daniel was just 16 months older than me, and this was still during a period where, at times, he could be clear-eyed, lucid, funny, sweet, entirely his usual self. We’d recall a childhood memory together, or prepare lunch or share a joke in the kind of shorthand that only siblings are able to. Then perhaps ten minutes later with my heart sinking, I’d overhear him murmuring to himself, intently deep in conversation with – who? He wouldn’t say, knew enough that it was something he should still try to conceal, skittering between the cloth of two worlds. It felt like a betrayal, an awful exclusion. But despite the daily thrum of anxiety and fear, looking back I can see that there was still a wellspring of hope. I think I was almost casual in my belief that Daniel’s story would end happily. Partly because in the midst of a painful situation, it’s unbearable to consider an alternative, and partly because as children we’re raised on happy narrative arcs – difficulty, climax, resolution. This was simply the conflict before the positive transformation. A blip, a phase, the struggle of the butterfly to drag itself out of the cocoon. We’d get through it. Just a question of finding the right place, the right drug, the right support system, the right therapist.
Not long after, I relocated to Berlin for love. I moved in with my then-boyfriend and his small son, Luka, and began teaching at the Berlin School of English. It was March when I arrived, and winter was still bleeding its chilly way into spring. Thin ice on the cobbles, then just a little later the dense white candelabra of the chestnut trees. The musty smelling, cathode-lit shops selling retro clothes, and the still smoke-filled cafes on Kastanienallee. Sitting in Kollwitzplatz under an limpid blue sky, bundled up in duffel coats, drinking espresso with the sunlight winking into our upturned, grateful faces. Dark history lapping at our feet, the elegant water tower that doubled as Luka’s kindergarten was marked with a plaque acknowledging the wartime torture and murder of resistance fighters deep in it’s basement. The daring stories of escape to the West that I heard from my East German students; the metal and glass ‘Palace of Tears’ construction where relatives crossing the border would say their goodbyes; the eerie Geisterbahnhöfe, ‘ghost stations’ beneath East Berlin whose existence was erased from GDR subway maps, their signage removed and walkways blocked, but through which passengers from the West would still pass, glimpsing heavily armed, phantom guards peeking back at them between narrow slits.
Netzplan S-Bahn Berlin
My colleagues at the BSE were a fantastic collection of wanderers; American James, an avuncular teddy bear with a pock-marked face, returning to teaching after many years of outdoorsy work in California. I see him standing by the photocopier with a sweet, apologetic smile, “I haven’t used one of these in years…”. Wendy, a pretty dark-bobbed Canadian girl with her German fiancé. Emma and Eoghan, the warm, witty Dublin imports and eccentric, impish Bryn, a man only just taller than me who often slept overnight in his leather jacket on the sofa of the staff room, went through phases of rarely washing, but was adored by students and staff alike for his almost Zen-like and methodical teaching manner, and total disinterest in material gain or status. And John, one of the directors, originally from Birmingham, always in a crisp white shirt and with a killer sense of the absurd that’d leave me in fits of laughter.
After hours, we’d convene at Windhorst, a candlelit cocktail bar just 2 minutes down the road on Dorotheenstrasse where the owner, Gunther, would mix my favourite Gimlet: gin, grenadine, crushed ice and lime juice. Or on weekends, we’d gather at the beer gardens on Oranienburgerstrasse – I’d take the yellow tram from home past the synagogue with its expressionless, armed sentries, past Tacheles, the graffiti painted artists’ squat, and find an obscured entrance into a sun-dappled courtyard with a shanty-bar: nailed together wooden off-cuts, beers cold and slippery straight from the ice-bucket.
Tacheles, Berlin // Credit: http://www.bushtrash.de/bilder/tacheles/tacheles.jpg
While my life in Berlin offered me a longed-for normality, a distance from the difficulty of home, the physical pain itself intensified. One day, throwing my leg over a high railing to catch a tram on Friederichstrasse, I felt a twinge. A couple of hours later, I was in agony, immobile on the floor of my Prenzlauerberg apartment. My back? My hip? My boyfriend came over immediately, and I was taken to the local hospital, and injected with muscle relaxant, causing the spasm to subside. X-Rays and MRI scans ensued. Lying flat in the tube, I remember being fascinated by the sound of the scanner, and the music that the electricity passing through the gradient coils created. It was an alien music, beautiful in its own brutal way, and I could clearly decipher voices and words within the sounds. Was this a small glimpse of how it felt to be my brother, I wondered? The esoteric, the divine, emanating so secretly, so personally in daily life? It was a state of wonder, and also privilege – I am the one chosen to receive these communications! But for Daniel, like most experiencing psychosis, these encounters were unstable, toppling him so quickly from a seemingly untouchable place high on a sublime peak, to the abyss below. Exaltation became condemnation. The hands that had just so recently borne him aloft became claws intent on tearing him apart.
The German for MRI, ‘Kernspintomographie’ became my favourite word, trotted out for the amusement of friends at parties, and randomly inserted it into conversation whenever the opportunity arose (or didn’t arise, for that matter). I don’t recall being particularly worried about the results. Perhaps I was enjoying, for once, being the sick one, the attended-to one.
A few weeks later, Dr Kaiser called me in to receive the results. “Well, the good news is that it’s not cancer”, he began. Cancer? Ok, I hadn’t even considered that. “You have the hips of an elderly woman and you’ll need an operation within the next 5 years”. I think the word ‘unceremonious’ would apply nicely here. It turns out that the consequences of the diagnosis I’d received at 12 was actually more serious than the consultant had conveyed or I suppose, understood. I rode home (or ‘drove home’ as my students would always literally translate from the German) through the southern suburbs on the bus, tears streaming, the summer streets seen through an aqueous glaze. I remember a woman who was sitting opposite leaning over with lowered eyes, offering me a pocket tissue and quickly withdrawing into her own space. A small gesture of kindness coupled with a kind respect for my privacy. Funny the tiny moments one recalls, so many years on.
A couple of years passed and at the age of 23, I returned to London. In the meantime, Daniel’s linear narrative had become a circular one. Released from the psychiatric ward, then a few nights or weeks of tranquillised sleep and minimal day time activity. We became well-versed in the odd vernacular of neuroleptics, their quasi-Latinate names. First-generation Largactil (now discontinued), Stelazine, Haloperidol. Newcomers Risperidone, Clozaril, Depixol, Quitiapine, Olanzapine. He was tried on them all. Supplemented with Epilim, Procycladin, beta-blockers, anti-statins, Temazepam, Diazepam, Valium as required. Side-effects: total exhaustion, intense restlessness, a shuffling gait, significant weight gain, ‘blank affect’ (no smile, no emotion, no one home). Fingers writhing, feet incessantly tapping, the beginnings of movement disorders, possibly irreversible.
Amidst this all, my mother’s ever hopeful nature just about sustained Daniel, but the flip side of this optimism was perhaps an unrealistic sense of what he could do, achieve, be. Reduction of these toxic medications was an understandable move so that he could begin to return to a semblance of normal life, but each time this would result in an increasing wakefulness, a rising mania. Then soon, night as a battleground, his body and mind tormented by unseen abusers. Smashed windows, doors, furniture shattered, scattered, broken. The weary dawn light revealing a puckered landscape, the wooden floor cratered with the force of these impacts. My mother would call the glazier, the locksmith. The neighbours called the police. As a last resort she’d call the hospital, though only in the worst instances, knowing full well what it would mean: indefinite sectioning, heavy drugging, sometimes compulsorily so, my brother calling day and night, begging like a terrified, abandoned child to come home. Then the hard fight of the tribunals – the legal recourse to get him out of where she’d been forced to put him in the first place. Her lioness instincts as a mother were to bear, bear, as much as she could, beyond the limits that everyone around her saw despairingly were being transgressed in this painful, impossible love.
Last year, after my leg gave out, a summer trip back to see friends in Berlin for the first time in several years had to be cancelled. Despite my determined efforts, I only made it 10 minutes down the road with my wheelie bag before admitting defeat and turning back. In January of this year, I finally met the surgeon at the Royal National Orthopaedic Hospital, and he confirmed total hip replacement – eventually on both sides – was the only option. I’d expected endless waiting lists, and cancelled appointments, but in this instance, the NHS seemed to be in great shape. Once the decision had been made to get a replacement, everything moved fast. Arrangements were made for a May procedure. Meanwhile, my anxiety grew: I was afraid to be a patient, not having ever been casually admitted overnight as a child. My associations with hospitals so far: arrogant professors, misdiagnosis, locked psychiatric wards and the death of close relatives. But there wasn’t really much choice remaining, just a future of worsening debilitation.
So Jasper and I woke at dawn, 4.30am on Tuesday 26th May 2015, and travelled up to Stanmore by taxi and tube to arrive at 6.30am. In the pre-operative assessment, I explained to the nurse that I didn’t want morphine, or as little as possible. Despite one friend who had the same procedure gleefully telling me he was high as a kite and enjoyed it enormously, I know from experience that most opiates make horribly, feverishly sick. “Ah yes, morphine. Just tell them you’re allergic else they’ll give it to you. It’s only popular because its cheap and effective”. Jasper and I laughed afterwards at her candid talk, but it was excellent advice and I was given oxycontin instead, a painkiller beloved of many pill-popping Hollywood stars.
Me about to be wheeled into theatre
There were a few other surprises in store for us. For a start, everyone seemed a bit unclear about which hip was being replaced. The admission papers said the left one. But it had in fact remained undecided after my last consultation. I thought I needed the right one doing more urgently, though both were in a damaged state. After tentative discussions, they drew a big arrow in marker pen on my right knee. Cue jokes – For God’s sake, don’t give me a knee replacement!! It’s the left leg, right? Did you say right? No the left! No one seemed to want to make the ultimate decision, and only literally at the very last minute did we settle on the right side as it was causing me the most pain.
Amin, the anaesthetist also popped by before the operation to advise me against a general anaesthetic. “We’ll give you the same stuff as Michael Jackson – you’ll be semi-conscious but you won’t remember a thing!”, he proposed merrily. You mean the stuff he OD’d and died on? Amin, with a delighted grin: “The very one!”. It’s definitely the case that black humour prevails in hospital settings. Later, Amin did the moonwalk just before he stuck a cannula into my hand. I was pretty high by the time they wheeled me into the operating room, and was conscious long enough to see the head surgeon yawning. “Sorry”, he said to me, “my little daughter is sick and kept me up all night”. Yep, in retrospect I must have been really high as I didn’t panic and it only occurred to me afterwards that he was essentially saying he was knackered and possibly infectious. MJ’s propofol took effect, and I remember nothing else until I woke up in the operating room, to see the assistants scrubbing down. Shivering from the effects of the epidural, they gave me a ‘bear blanket’ (a kind of inflatable thermal device) to keep warm, left me in the recovery room and then half an hour later wheeled me back onto the ward.
One minor irritant of having arthritic pain is that a certain proportion of people oddly assume that you are a fully-signed up member of the Conventional Medicine Brigade and that they are about to single-handedly enact a Damascene ‘Alternative Therapy’ conversion. “Oh you’ve got osteoarthritis? Then you’ve GOT to try Hatha yoga and you must take Vitamin D capsules and Omega 6. I’ll send you a web link”. No shit, Sherlock. After this occurred over the course of many years, I longed to whip out a kind of pre-typed summary in response, though marauding around waiting for an opportune moment to throw somebody’s presumptuous yet well-meaning advice back in their face is not a particularly pleasant thing to do.
So I contented myself with just imagining the letter:
I had to put my tie-dyed turban in the wash today, so you probably missed the fact that I am made up of at least 68% hippy. Before you continue to dispense advice, it may save us both time for you to know that in my several years of chronic pain, I’ve already tried the following:
- Cranio-sacral therapy
- Bowen therapy
- Acupressure & Acupuncture
- Chinese medicine aka 2 months of brewing putrid herbs and holding my nose to drink them, three times a day
- Pilates and Yoga: Hatha (mmm…nice…lots of lying down), Hatha Flow (a bit less lying down), Kundalini (white robes, enjoyably trippy Sanskrit chanting), Bikram (yoga in a sauna), Iyengar (yoga with mystifying straps and wooden blocks)
- Swedish massage; Sports massage; Thai massage; Biodynamic massage (lady with ultra-sound machine interpreting the gurglings of my stomach)
- Feldenkrais Therapy (apparently, each of my legs represents my relationship with my respective parents)
- Procaine injections: whereupon a part-time gynaecologist called Helmut injected me with a drug chemically related to cocaine (“but legal”, he helpfully clarifies). Cue weird lucid dreaming, lots of weeping, but no long term pain relief. Helmut later calls me to sing me a song on his guitar recounting our treatment session. I think he’s drunk.
- Dietary exclusions: wheat, dairy, sugar, fermented products, mushrooms, tomatoes, chocolate, orange juice, juicing. In real life: staring forlornly/off-puttingly at other people’s food, especially croissant and coffee combos
- Supplements: Multi-vitamins, Glucosamine Sulphate, MSM, Omega Everything, Krill Oil, Rosehip extract, Turmeric, Pau d’Arco, Spriulina, Aloe Vera juice, Magnesium, Potassium
And yes, in case you’re wondering (you probably are), I have also considered psychosomatic factors as a potential aggravator, so you should know I’ve also tried the following: counselling (person-centred approach), psychotherapy, psychoanalysis, the Hoffman Quadrinity process (screaming and bashing pillows with baseball bats – very cathartic), Satsangs with enlightened masters, Family Constellation Therapy, Avatar training. All awesome, but didn’t help me regain lost cartilage, or alter the shape of my bones.
Thanks for your concern.
Proof: Yoga in the Chicken Shed, Ibiza
Maybe it’s because of the current background of threats to the NHS, maybe it’s that I’ve never experienced the NHS first-hand in such an intensive way, but I was truly impressed by the standard of care. Sure, it’s not perfect. Sometimes it takes time for a nurse to respond to a call bell. Sometimes the nurses aren’t great at communicating and you have to ask the same question a few times or to a couple of different staff members. But mainly, they and the health workers were calm, friendly, informative and kind. And furthermore, I was treated by a world-class surgeon and his team, and afterwards cared for, monitored 24/7, accommodated, medicated and fed for 4 days straight, entirely for free. What a privilege! (And yet – it shouldn’t be a privilege. Or better put, it should be everyone’s privilege to appreciate).
View from my Hospital Bed, RNOH
I also felt doubly blessed that as I lay recuperating on the ward, I knew I was there on an upward trajectory, the path of recovery and improvement. In the bed opposite me, there was a woman just a little older than me recovering from the removal of possibly cancerous bone tissue. Neither of us felt well, we were both in a lot of pain, (mainly from the after-effects of the anaesthetic and the side-effects of painkillers), but how much more difficult to bear, I thought, if you also have to endure the anxiety of not knowing what chaos, what mutiny might be unfolding within your discomforted body.
And I also thought a lot about my brother and how it must have been to stay for so many nights and years in the various institutions to which he was admitted. So much of his adult life was spent sleeping in a hospital bed very much like this one, the same thin white curtain dividing the single beds, the same paper pill cups and proffered glasses of water, the same regulated routines played out, both soothing and monotonous.
Some things are hard to remember, their excavation an intricate and painstaking process. And sometimes what breaches the sea wall of memory is unexpected: the particular angle of sunlight through a window; the smell of floor detergent mingling with microwaved ready meals; the sound of keys clattering. Anxiously standing in the airlock between two extra-heavy, plexiglassed doors, the gulp of worry as you enter the ward, not knowing how he’ll be today. It’ll be ok, it’ll be ok…to him, to each other, repeated refrains, mantras, we don’t even need a happy ending, just a bearable one now. Some days he is clean shaven, and dressed in unfamiliar clothes and we are led to his bedside where he is curled up between clean, white sheets. He is, for a moment, the little boy we once knew, vulnerable and sleepy.”He’s had a good day, today”, the nurses say when he hasn’t been disruptive. The good days are calm, and a little expressionless, the waters flat and mirror-like. Bad days are raging fury, chaos, bitterness, no sleep. Fear of him. Fear for him. Impossible binaries.
These days I have buried deep into the earth of me. I don’t mean to say that I can’t describe them, create neat sequences that chart the course of events, reconstruct key moments, even say how I felt. But in truth, those kinds of words can only sketch out the barest perimeters of the scene.
When I was a child, I watched my grandfather paint watercolours, one brushstroke over the other to create opacity – a dark night sky – or transparency – scant cloud over a luminous moon. In the same way, to fully convey those days to you, I’d need to paint my own layer upon layer within these lines.
I’d start with the colour of loving somebody for as long as you have drawn breath: this is the pale wash that covers the canvas. Then, parallel strokes whose edges bleed and merge: this is the inseparable nature of that love, a brother and sister as children sleeping, their arms entwined. Then the fixed lines of perspective, like inevitable but unknown fate, accelerating and narrowing into the distance. These lines converge at the vanishing point, where the story begins, Daniel calling me aged 15, crying, from an airport in a foreign land: I’m so scared…I think I’m going to disappear. Above, a darkening sky, a flock of crows hemming the land, we cannot shake them off. And finally, in the foreground, a single, stubborn fleck that lights the landscape, the white-gold flame of hope.
Daniel and I, aged 6 & 7
There are different types of pain, for sure. The first small ache in the body, which tells you that something is amiss, and should be attended to. Debilitating pain, where the fear of the unknown (a hospital admission, an operation) is finally outweighed by the knowledge that you cannot continue in this way. A history of collective pain, such as the Palace of Tears, still haunted by final departures, uncertain futures. The pain, too, of watching the person you once knew and still love slowly vanish, even as their body persists, a mourning with no graveside, no clear end.
And then, there is the phone call one sunny August afternoon that says: it’s over. And all the years of longing and grief struggle and rise up into one single, contorted sound that doesn’t belong to you, but to a wounded animal; a cry that contains everything that you had hoped for, and everything that has now been lost.
There are many kinds of comfort too. An injected analgesic that brings temporary relief until the worst has subsided; a stranger on a bus who reaches out with a small offering that says, ‘I’m here with you’. A mother’s unyielding, uncompromising love. The medicine of laughter.
The comfort of a friend’s fierce embrace that holds you together just as you’re falling apart.
Daniel and our beautiful mum