Chalk bones: a childhood illness and a trip to Lourdes
When Sinéad Gleeson was 13 the synovial fluid in her hip evaporated and her bones began 'turning to dust'. After months of pain, surgery and a long school absence came the prospect of a cure: a pilgrimage
Sinéad Gleeson with her brother Martin: she has to walk around the house while her hip is in plaster, to avoid blood clots. Photograph: family collection
Sinéad Gleeson with schoolfriends at their hotel in Lourdes: her wheelchair becomes a comic prop without making her the butt of the joke. Their kindness matters more than prayers. Photograph: family collection
The body is an afterthought. We don’t stop to think of how the heart is beating its steady rhythm or to watch our metatarsals fan out with every step. Unless it’s involved in pleasure or pain we pay this moving mass of vessel, blood and bone no mind.
One day something changes: a corporeal blip. For me it happens in the months after turning 13. The synovial fluid in my left hip begins to evaporate like rain. The bones grind together, turning to dust. It happens quickly, an inverse magician’s trick: now you don’t see it, now you do. From basketball and sprinting to bone sore with a limp. Hospital stays become frequent, and I miss the first three months of school four years in a row.
Doctors try everything to solve the mystery. First it’s by applying slings and springs, a jauntily named type of traction that sound to me like a clown duo. Then surgery. Biopsies. An aspiration, which suggests hopefulness but yields no results. My godmother visits daily, bringing dinners and soft toys that she has won in claw-crane machines, while my acetabulum continues to disintegrate.
The eventual diagnosis is arthritis, and doctors mention an operation called an arthrodesis, which, even in the late 1980s, they are reluctant to perform. “Especially on girls”, the surgeon tells my parents amid much throat clearing, but I don’t discover what he means until later years.
Today, as an orthopaedic fix, an arthrodesis is performed only on horses. I imagine washed-up pure-breds owned by sheikhs, dosed up on anti-inflammatories. A last resort for pain relief, it involves fusing the ball and socket of the hip together, using metal plates and screws. To heal fully the bone solidifies over 10-12 weeks, which are spent in a hip spica plaster cast.
It covers two-thirds of my body, from chest bone to toe tips, and it takes two people to turn me over. The cast is a jaundiced white; the layers of mesh weigh as much as an anchor. During 10 weeks of bedpans and confinement I learn how to heave its sarcophagus heft out of bed whenever my parents are out.
The bones slowly cleave to each other, rendering movement minimal and the leg shorter. It holds fast for 20 years, until two pregnancies 16 months apart act like a bomb going off in my bones.
Physiotherapy means mandatory swims, so for three months in winter my mother drives me to a pool daily. We get bored of the cold, and of the same blueness; of me swimming lengths of front crawl and breaststroke over mosaic tiles. Days become weeks, and I propel myself through lanes of lukewarm chlorine without incident. Until one night a group of rowdy teenage boys slam into my hip.
Unexpected pain has the effect of a power cut. My body stops; my brain wonders what has happened. No flailing; just stillness. I stare into the chlorine blur, wondering if the joint is damaged, sinking until a lifeguard dives in and fishes me out.
My grandmother once worked at a local pool, and she convinces her old colleagues to let me swim there when it is closed. Alone, with the underwater lights, the 25m pool feels eerie. All that blue, and quiet, the water shadows on the ceiling. I scare myself by wondering what lies beneath.
Each week I swim faster and get stronger. My body becomes an inverse: strong, taut arms; a weak left leg that refuses to move, to build muscle. It withers, and is still thinner than the right. I get used to my lack of symmetry.
The arthrodesis causes my leg to drag. I get used to the limp, the noise of the crutches, but gain a new self-consciousness. I avoid catching sight of myself in shop windows. Crossing a dance floor or a hall or any room bustling with happy, oblivious people, I slink along the walls, taking the long way around.
I enter rooms from the right, to disguise my limp. When someone asks what happened I always reply that I fell, because this shorthand is easier and quicker and less embarrassing than getting into the story.
And that’s just the nub of it. What I feel more than anything is overwhelming embarrassment. Shame over my bones and my scars and the clunking way I walk.
On an early visit to the surgeon, to check my spine for scoliosis, I am asked to wear a swimsuit. Mortified, I cry all through the exam, and the doctor, growing impatient, throws a towel over my lower body.
“There. Is that better?”
It isn’t. I am a self-conscious girl being humiliated for her sense of shame. Few of us escape teenage self-consciousness, but the complicated roots of female bodily shame are sown early. I know from pop culture that I should want to be looked at, but when I’m regarded I don’t know how to feel.
In 1988 I am 13, and Ray Houghton scores for Ireland against England in the European Football Championship. Women in headscarves light candles in churches in the hope that we’ll beat the Soviet Union (we draw) and the Netherlands (we lose).
In 1988 I spend all 365 days of the year on crutches.
In 1988 my mother brings me to an old red-brick house near South Circular Road in Dublin. The woman who lives there owns a small glass relic of Padre Pio, containing some of his bone. She rubs it over my hip with a susurration of prayers. My hip and the bones of a Catholic saint are briefly united, and although nothing happens in the weeks that follow, my faith stays strong. I develop a habit of dipping my fingers in the holy-water font at Mass and flicking a few drops on to my hip.
In 1988 my school announces a trip to France, including stops in Paris and Lourdes. Demand for places is so high that a raffle is held. I automatically qualify for a place: my crutches are the equivalent of a play-off clean sheet, and my best friend is allowed to be my plus-one. She’s Protestant, and her religion doesn’t feel the same kind of devotion “for the Virgin Mary”. Neither of us knows if Mary will intercede. All eyes are on me, because they all think I’m their chance of a miracle.
In the 1980s the cheapest option for a trip to Lourdes is bus and ferry; this is before budget airlines begin offering €37 flights to Perpignan and Carcassonne. Pilgrims will then sit next to nouveau-riche Irish off to “Perp” for a weekend of fizz and shopping.
When I make the trip in 1988 it is an epic, complicated journey. The ferry ducks and bobs across a heaving English Channel. Everyone stays in their cabins, vomiting, because of the sheer equilibrium and will required to make it to the bathroom.
Our coach rolls off through Rouen and on to the lush gardens of the Versailles palace. From there to Paris, with its cafes, the tower. We all take endless photographs and binge on souvenirs, but I can only think of the grotto and what will happen.
The drive south to Lourdes takes all night, and pain makes sleeping difficult. We pass vineyards, and I watch the stars, listening to the untroubled breaths of deep sleepers. I think about the baths and how, if I believe it enough, I will be cured.
The hills in Lourdes are vertiginous. They rise, fall and repeat like cartoon geography. Flanked by the Pyrenees, six million tourists a year visit Lourdes, the only French city with more hotels than Paris. The castle, or Château Fort de Lourdes, can be seen from all around; it was once attacked by Charlemagne.
Reports are not wrong: the roads are narrow, and the descent to the basilica is steep. Beside it the Gave de Pau is the fastest-flowing river I’ve ever seen. It loops around the Massabielle rock, where Bernadette saw her first vision of Mary, and it’s here in the rock face where the grotto stands.
The concourse teems with people, and this surprises me. I hadn’t expected it to be so popular.
Faith, that elusive, blind thing, is tangible in this place. There are physical signifiers everywhere, along with commodification. I avoid miraculous medals and crucifixes and buy a View-Master for my younger brother, with rotating rectangular shots of the basilica, Bernadette and the grotto.
Everywhere We Go (Everywhere We Go)
The hills are the reason I have to bring a wheelchair. Earlier, when my mother hears about the up-down nature of the streets, she borrows one from the Irish Wheelchair Association.
On the day we are due to leave from outside school, the coach eases into view and I cry in our car. The arguments have gone on for days: that I don’t need a wheelchair; that once I get into it everyone’s view of me will change.
My parents make a strong case: comfort, safety and those hypotenuse hills. Outside the car window there is excited chatter, with parents pressing extra francs into teenage hands.
My father promises he won’t load the chair into the baggage hold until everyone, including me, is on board. He waits, and discreetly heaves it on top of suitcases. The bus shudders with its weight. I just won’t use it, I tell myself.
It is spring when we arrive, the day not yet warm. When I look at the photos now I smile at my friends’ perms and shoulder-padded pastel blouses; my denim skirt and ankle socks.
Our shyness is palpable. The hotel bar sells cafe au lait in small white cups for three francs, which we ask for in untried French, and sip, feeling sophisticated. Paddy the bus driver says I never look him in the eye when I speak as he lifts the wheelchair from the bus. I refuse to get into it.
Missing the first three months of term in a new school has left me in a hinterland. Fast friendships have already formed, and I have been separate, an island away from my classmates. Now eight or nine of them, boys and girls, stand silently regarding the chair while I sink into my stubbornness.
I think of this moment many times later, and every time I remember the panic as a completely physical thing. The boys grab the chair and began to whizz up and down the road outside the hotel. They pull wheelies, spin each other around; it has a domino effect: everyone wants a go. The chair becomes a comic prop without making me the butt of the joke.
There in the French sunlight we laugh, and I love them for their kindness. It matters more than prayers.
The weight of water
When the Virgin Mary appeared to Bernadette in 1858 she revealed that there was a spring beneath Lourdes. Its waters, said to have healing powers, are funnelled into Lourdes’ famous baths. Housed in a stony structure resembling a cave, they are tended by sturdy women who have guided thousands of hopeful visitors into the water.
We queue, and when my turn comes I walk into the dark room. A woman asks me to remove my clothes and wraps a wet, white shroud around my body. She asks if I can walk without crutches, and I explain that I can manage short distances.
The bath resembles a stone trough, and, as with the grotto outside, it has a uterine shape. The power of these spaces, whether they’re of flesh or stone. The women guides me into the water, and the cold – the extremeness, the sting of it – is a jolt. The room is barely lit, and these women, with their strong arms, slowly dip me backwards. I am immersed with all my prayers and hopes, and for a moment the chill of the water obliterates everything. I want it to seep into my bones and make me new. And after months of thinking about how it will feel it is already over. My skin is instantly dry, but apart from the purple mottle left by the cold nothing feels different.
After dark, rain falls hard, sluicing down the hills in streams. Every night there is a torchlight prayer procession, with thousands of people carrying candles thin as stems. The wax encased in white paper with blue-ink images of Mary. With the weather and the geography, a teacher advises me to swap my crutches for the wheelchair, to leave my hands free to hold a candle. Flames fizz in the rain, and the crowd snakes around the basilica, murmuring prayers and rotating rosary beads in their hands. The mood is sombre but comforting. And in the middle of this crowd of believers my faith wavers: for the first time since my arrival – hours since the baths – I don’t think there’s a miracle here for me.
Two weeks later I return to the hospital for a pelvic X-ray. The doctor announces that my bones have deteriorated rapidly and that I will need a major operation.
The arthrodesis happens, and after 10 weeks encased in hip spica – I’m my own alabaster statue – a doctor attempts to remove it with a cast saw. Blade meets skin, and I try not to imagine what’s happening beneath the plaster. The pain feels like a scald, of heat spreading. I explain this to the orthopaedic doctor, this man I’ve never met, and he does that thing I’m used to male doctors doing: he tells me I’m over-reacting. A rotating blade is slicing into my flesh, but I need to calm down. When my mother starts to cry he demands that she leave the room. Fifteen minutes later I plead with him to stop, and he finally gives up, annoyed.
The next day the cast is cut away in an operating theatre under anaesthetic. Beneath the shell my limbs look tanned, but this is just 10 weeks of dead skin layers. There are multiple deep cuts. The leg swells that night, and a nurse applies a compression bandage. Every time it’s removed it pulls at the new scabs, and the bleeding starts again. Twentysomething years later I have six pale scars on my thighs and knees. Vertical lines, pink and fierce, telling a story.
Hips and makers
During my second pregnancy my hip deteriorates irreparably, and another surgeon explains the pain as just baby blues. Eventually I’m given a total hip replacement, after convincing a doctor that it’s the only solution to 24-hour pain. Granted as if this were a privilege rather than something essential. The familiar need to plead and convince, to prove myself worthy of medical intervention. My body is not a question mark, and pain is not a negotiation.
The new hip is five years old. I can cross my legs and cycle a bike for the first time since I was 13. It beeps at airport security checks, and my X-rays are a constellation of old and new metal. My scars are in double figures, but they are a familiar landscape.
The stories we tell come from within, from our marrow, and the well of our hips. Part of me wants to go back to Lourdes, to walk the hills with my ceramic and titanium joint. To view it through the eyes of my lapsed faith, my nonbelief.
Although I do believe.
Not in gods and grottos and relics. But in words and people and music. Our bodies propel us through life, with their own holiness.
Relic and bone.
Chalice and socket.
Grotto and womb.
There’s a Kristin Hersh song that in moments of distraction often floats up from the floor of my mind. I’ve rolled the words back and forth like oars; sung my children to sleep with it.
We have hips and makers
We have a good time
They keep me dancing.
Finally it’s all right
And it is all right.
Without these complicated bones I’d be someone else entirely. Another self, a different map.
This is an edited version of an article published in Granta’s New Irish Writing edition; Sinéad Gleeson is working on a book of essays