Excerpt from the book Le Roseau penchant Published in Cercle Psy of May 2018 with the kind permission of Fauves Editions
She had everything she needed to be happy: a loving husband, three lovely daughters and an exciting job. If only everything had gone as planned... A banal scoliosis, a classic operation "a priori". Except that the spinal cord was affected - medical hazard or bad luck - she wakes up paraplegic. From then on, life would never be the same again. She discovers the handicap, the imprisoned body, the status of patient, the daily life in the hospital. Infantilisation and re-education.
With a brutalized family life and uncertainty as the only horizon, how to find an identity when everything escapes us? How to face fear, calm one's grief, express one's sorrow, one's anger? And to take life in hand again.
With a singular writing style, sometimes poetic, sometimes harsh, always carried by a delightful language and without ever losing her sense of humor, Nadalette La Fonta Six depicts a universe of suffering and despair, sometimes splashed with joy. For this story is that of a struggle but also of a rebirth.
First meeting with myself.
My first memories were of a belly, like a balloon.
Then nothing. Then my legs, dead, inert. No more panic than that, I wasn't even sure they belonged to me anymore. And my mind going from one to the other, free.
And I was told that it will be long, slow. Maybe for nothing.
And they all left. Jacques went home, the doctors elsewhere, the caregivers to another room.
And I, in this bed, could not avoid anything, nor run away from anything. I was there.
Sleeping. When I woke up, I was still there. Powerless body, without movement, without action. Posing, pausing, resting. Nothing.
Emotions surge. Fear, sorrow, anger, in a loop. Powerlessness.
Objectively I can't do anything, I can't do anything anymore.
Days and days, nights and nights.
Nothing I would want, nor avoid, nor run from.
My life instructions are no longer useful. Paraplegia.
I'll have to learn. Hopefully, walk again.
Nothing is as it was before.
My body no longer exists, I can no longer rely on my mount.
I am waiting.
Coping, learning, relearning everything about my body. The revelation of my awakening was to integrate my body and to heal with it.
On this initiatory path, after the crucifixion - operated and open for nine hours the first time, then reoperated for four hours, the spinal cord, which controls the legs, damaged, and open from the neck to the kidneys - and before a possible resurrection, there was a descent from the cross.
Before trying to repair myself, I had to protect my broken body, the envelope that remained of it, now so fragile. The chosified body.
I was pierced with two titanium rods from top to bottom, and had screws all over my back. Hence their fear of breaking me further, perceptible in all the caregivers since I had regained consciousness, which had quickly become, instinctively also my fear of being broken. I could feel their fears and they were giving the LA, amplifying my own.
I was going to live for several months in a mold, a hard plastic corset, which would be sealed every day as soon as I was lifted up, like an armor around me. Increasing my sense of isolation.
It had to be built, and ten of them set about it, united in effort and oozing anguish from every pore, even though they had done it hundreds of times. It was vital that I be corseted, the sine qua non of the life I was about to face.
One morning, ten days after the operation, they took me to a plaster room, cold and icy. Like Christ descended from the cross, they carried me, supported me, naked, trembling, petrified. They just concentrated on the gestures to be accomplished, as fast as possible, as well as possible, hoping to avoid any fatal accident, any fall.
They surrounded my whole chest with cold bands and plaster. One held my head, two held my shoulders and arms on either side, two others supported my shoulder blades, the sixth, my waist, others managed my legs. The orthopedist was wrapping the bandages around my body, the twenty hands moving to, and holding me, and letting him do it, Then he covered me with plaster that he warmed up. I was partially rested on a stretcher. Then he cut the plaster with a saw, me in it, him stretched to the extreme. And I will be decaissera, désincarcera. Very gently, to rest me exhausted. Finally in the safety of the stretcher. The tension dropped in the room.
The way of the cross.
The next day, we moved on to the table phase, which was just as symbolic.
The operation straightened me out, I am straight, taller, but I can't stand up anymore.
What is the point of living like this for hours on end, every day, strapped to an uncomfortable massage table, in a sort of immense refectory for bruised bodies?
The feet rest on wedges, the legs are tied, in fact I'm tied all over, and the table has to stand up, me with it. The horror. The movement is tiny. Minute and violent.
After two months of lying down, the body only knows the zero degree of bed rest, the blood no longer circulates, the feet, which no longer exist, no longer touch the ground, the muscles have disappeared. Verticalizing means straightening up to 90 degrees. To the standing position.
Fear for me, I must not fall, I must not collapse like a rag doll. We'll go slowly. WHERE? Get up, get vertical again. It will be slow. That word I can't imagine. And slow is really slow.
The controller is placed in my hands, two buttons, upright, down lying. I don't want to take it, I'm scared to death. I have the impression that if I touch this controller, I will confuse everything and explode against the walls, the ceiling. It is fear, my fear that I finally meet. I am overcome with terror, in my body, in my lungs, flooded with oxygen, gasping, in my worried, questioning, anxious eyes, in my tight, acidic throat, in my burning esophagus, in my racing heart. Pure fear. The fear of fears. Snippets of the days just past pop up, infest me, amalgamate with the fear in the present.
Fear of falling, falling from the table, the bed, the stretcher. And the body that gives up, absences, nausea, dizziness, loss of consciousness, the white, the cold, the weakness.
They try to reassure me. It is normal. But I know they are on the alert, worried, they monitor my blood pressure, my breathing, my oxygen. At the slightest drop in my blood pressure, they plug me in, they stop, they stop. And I remain, waiting, in apnea, terrorized, tetanized.
And at the beginning, we didn't talk about sessions, just a few moments, even moments on the table, once or twice a day, under intense surveillance, a few minutes in an ocean of precaution, in a universe where I was transhipped like a corpse, where any new manipulation was organized like an emergency convoy
I am slowly straightened up, degree by degree. And at five degrees, it is again the dizziness, the chamade. One goes down again. Without ground, without feet anchored in the ground, the brain disconnects, without reality, without reference. I don't feel my legs anymore, but my body capsizes. And I beg to go slowly, to come back more extended, to stop.
At the same time as the angle was increased, the deformations of the legs and feet were discovered and tried to be stopped with weights and counterweights
Their real ambition is sixty degrees, it will take more than two months to get there and endure it. For weeks the table wavered, between nothing and not much, and it was already so hard, so exhausting, so dizzying. Then one day, the same minimal journey was made without respiratory assistance.
This body, that I had never listened to, directs, demands. It expresses itself with violence, by all my organs that I discover, by my legs and my feet, heavy, dead, inanimate which are twisted like those of a disarticulated puppet. And it is impossible to dominate. It no longer obeys me, it does not progress, it does not repair itself, it does not heal, its recovery is not certain. Paraplegic.
The time it will take him is like drowning, we talk about months, we talk about years, without any guarantee. He's my boss now.
Then, tame the space that is no longer infinite, and limited capacities.
First manipulated, carried, moved by force by others, always harnessed like Joan of Arc, I learned to crawl on my bed, to mobilize my arms to straighten up, to handle my legs, to almost sit up, to slide from a bed to a chair, then to a rehabilitation table.
My life became what my body could handle. Only that. And it was only credited with the possible scope of action, narrowed, fragmented, reduced with paraplegia.
I would have gladly accepted the strenuous efforts, the heroic sessions. But my body wasn't up for it. The little I pulled on my arms, left them high, inflamed, forced to rest. I was not able to roll my chair by myself. My back, even if corseted, stiffened at the slightest shock, my shoulders, my shoulder blades, destroyed, anemic, could not even support my carcass alone. I was limited to small, measured efforts, small weights, small gestures.
And every other day, my legs were tested. We measured the energy of my muscles or rather its absence, muscle by muscle, in all positions. To make a catastrophic assessment, let's admit it.
I couldn't run away anymore. Even if I said get up and walk, it didn't work like that anymore. I was in the tunnel, and this time I had no desire to stay. If I didn't regain my faith, I was going to be dissolved into the disability, put away.
Yes, there were temptations in the background to give up, to let go of the case, but less than one might imagine.
Prison bed, barriers.
An insulating enclosure.
No other body hugging or embracing, tight, reassuring near mine. I am parked on this infamous pudding that inflates and deflates according to a capricious breathing rhythm, mechanically rocking me because that is all I have left, the mechanics of a lost movement. And this noise, this permanent, throbbing wind that has invaded my days, and especially my nights, and relentlessly gives rhythm to the mist that takes the place of my life.
I have been lying for days in this square where no one can reach me, delivered to the care, toilets and others, washed, protected, palpated, examined, naked or half-naked, dressed, undressed, soaped, rinsed, always lying, always lying.
Dragged in a shower bed, naked, towards the shower room, with the jet, lying down as always, impotent.
Pleasure of the water at the beginning but also so much tiredness, and the rage which goes up to be delivered to the other until my intimacy.
Diapers, well protections, but they are indeed diapers, diapers that I am made to wear!
My arms that can no longer embrace anyone, they have already understood exactly how little accessibility they have, they know how to manage by proximity the meager vital possessions.
My arms struggle to keep the pen, the phone, the Kleenex, the things I could avoid negotiating, asking for, within reach.
I know to keep them in a space I can reach. And with them, my few freedoms. And that these objects, futile, are the keys to the world. To be able to write, in order to freeze an idea, a need, an information that will otherwise fly away before I communicate it.
MY phone. And MY charger. To speak, but little, and to hear their voices. I never liked to call, but what a joy, when night falls on Garches, the silence, to be able to just hear the sounds of a loved voice, to simply say good night. I avoid conventional calls that make me repeat the same answers, which are not answers, to the same questions. But what a joy it is to hear the words of love and true tenderness from those closest to me.
A lot of text messages, pretty, tender, poetic that I read back. SMS to organize, contact, keep in touch. I'm not at home, but I'm still alone in knowing which closet to find the blouse that's hidden.
And I can write a few emails quickly enough, to resume a conversation, to give news, to take news. I have a lot of friends, all over the world, and the letters and boxes of chocolates are pouring in. And I want to exorcise the leaden blanket that seized me, the handicap. I declare on Facebook a reality that is both terrifying and embellished. Hospital, disability, grim environment, but smiling, peppy, positive, delighted with visits from my own, delighted with my first outing in a wheelchair, delighted with being strapped to a standing table, delighted. At least officially.
And I also have MY Kleenex, MY water bottle and MY dried apricots.
For everything else, you have to ask now.
Ask, ask, what a horror, no privacy, Even this kind of serving is not recognized to me as a territory, a space of my little freedom. "There are too many things on your table. But if it's MY table, get out, leave me alone, let me decide about this space, without your trays, your basins. I'm reduced to having my ass washed and having lunch in the same place, on my table.
This bed which moves, goes up, goes down, goes up-load, goes up body, with the mattress with air which chuinte like a metronome, this bed which, far from being from now on a haven of rest, softness and sensuality, accomodates however with avidity my tiredness, my pains, my incapacities.
And the horror.
This bed where my belly twisted with pain, unable to evacuate, full to screaming, swollen, painful, panic, fear of bursting, of dying, invaded from the inside by my stool.
This bed to the barriers of which I clung to, finally, to empty myself, alone, ashamed, expelling a mountain of my body, letting go shamelessly, all shame, just to the urgency of the need, to empty myself so much and so much, without end, days and nights during, just obsessed by this idea: to shit to cry.
This bed where I lie, confined, reduced to the immobility of my legs, going so far as to talk to them, to beg them to wake up, to have them positioned by others, to try to stimulate my failing muscles, ready for anything, even to accept the exacerbated sensitivity of my skin which electrifies, burns, twists, and the wounds of my feet which deform, collapse, collapse.
The bed where I pretend to exist in the evening, writing messages, phoning, swallowing a film, a meal to be able to reasonably say basta, it's over for the day, we draw the curtain, we close, we forget, I'm not even afraid to sleep.
I am alone with myself, not as bad as I could be if... If we don't think about the time that passes, about the time that is lost, if we don't think about these stolen moments that can never exist again, about this imprisoned existence, about what I have lost, about what is taken away from me, about running through the city, about climbing a rock, about walking along the beach, about dancing, about loving and being loved, about enjoying or not enjoying, about lazing around, about sharing a walk, a trip, an escapade with the other.
There is no more escape, I am here in this bed, the only option available today.
Stockholm syndrome -already- : I made myself allies of its barriers and I put my gris-gris within reach, within reach, this absolute rule which governs my life from now on.
In this bed, I am sad...
Excerpt: The Leaning Reed