On staying above the surface

4thmarch-35

I’m sitting here in my college flat in Oxford, chained once again to my laptop screen, reading with muted desperation about ‘diffuse alveolar haemorrhage.’ It would be fair to say that in some ways, I’ve come really far since the events of my latests posts, some of them written nearly 11 months ago now. In others ways, however, not so much.

I’m a parent to a little girl now, who toddles at my side and lacerates me with her cries as I rush to class through our front door. I’m a postgraduate student with course mates and professors and supervisors, who submits thousands of words per month and receives brief appraisals in return. My world has expanded beyond the tiny details of motherhood, encompassing lectures and procrastination and cumulative hours spent craning over library books. My daughter thrives in the care of others, her own life detangling from my own and opening up beyond my reach. And sometimes, more frequently than is healthy, I’m left alone in the tumult of my slow-recovering mind.

Almost a year lies between me and the night when I genuinely believed my life was over. But in some ways I’ve barely moved at all. Still that time is lingering, alive and vocal beneath my skin, stressing the precariousness of the life we’ve built and rebuilt since those weeks of waking nightmare. I start some days with what can hardly be called a ‘start’ at all, slowed by a heaviness in my heart and limbs and gut which makes even 11am lectures feel elusively early. I blink the blurriness from tiny words on endless pages; I blink the self-replicating cobwebs from my brain. I fight the feeling of my body spilling over its own margins and sliding into fatigue.

Meanwhile the sickness holds my body together as if with nothing more than thread. When I sleep on my back it’s with pillows underneath my knees, because there are days when even gravity seems powerful enough to bend them backwards out of joint. I brace my elbows for the needle-thin pain which threatens dislocation, each time I lower my small daughter to the ground. There are entire meals I can no longer make because my elastic fingers bend under the pressure. I monitor the way I sit and stand, carry groceries and ascend the stairs. I pause after each and every fit of laughter, listening with bated breath for the angry bubbling of a haemorrhage. I breathe through the chronic crackling in my lungs, burying the worries over what it might mean somewhere out of sight so that I can exhume it in a doctor’s office later. I have headaches which feel brain-destroying and neuropathic pain which sears bone-deep, no matter where it spontaneously arises. Orgasms feel like the edge of death –  but I won’t admit it and even that won’t stop me, because if you’re young and married and madly in love and everything is temporary and you can’t close that gaping hole of longing with consummations of that love, then what is life for anyway?

Sometimes I’m stuck mourning whatever special ingredient it is I’m missing which bars me from a normal life. And yet I know it could be so much worse – so I walk with powdered-glass pain grinding in my joints and feel absurdly grateful for it anyway. I put off academic work and admin and errands to indulge in my daughter’s love. I become lost in my husband’s embrace, getting liberally drunk on this most beautiful of things while my body still allows it. When you’ve made so irreversibly conscious of life’s fragility, the status quo moves along at a different pace.

So here I am, toeing the knife-edge between sanity and dysfunction. The balance was too delicate to write about at first. My world was overturned and scrambled and squeezed, in all its disorder and despair, into the rigid parameters of postgraduate life. It took all the energy I had to keep my head above the water; to try to step out of my situation and see it in full view might have derailed me. But the teaching part is over; between now and mid-August I’ll be left alone to learn the course again at my own pace. I’m sitting here now writing because while I’ve maintained a facade of normal functioning, betrayed only by my occasionally empty seat in class, my insides have been writhing for an outlet. Finally I feel the need for a space to revise the status quo, recalibrate my lenses towards long-term goals, and share this debacle with others who seek to carve room for themselves in a world which doesn’t yet have a cultural space for them.

-L

 

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An Illness that Lasts a Lifetime

“I have chronic illness. For those who don’t know what chronic illness means, let me help: the word “chronic” comes from the Latin chronos, which means “of time” (think of “chronology”), and it specifically means “a lifetime.” So, a chronic illness is an illness that lasts a lifetime. In other words, it does not get better. There is no cure.”

“An illness that lasts a lifetime.”

Of course, in these matters, perspective is everything. It’s been almost four months since my last post here, and in that time I’ve come to understand the power of perspective like never before. My lungs healed through early summer but my mind, rattled by that near-death experience, was just getting started on its descent into madness. It is probably best that I didn’t write here as it happened, and infect the internet and the EDS community with any more of that most devastating disease called Hopelessness. I’m sitting here at my parent’s house in Scotland now, three days away from moving to Oxford, and I’m finally far away enough from the events of this summer to look back at them without descending into panic.

Near-death experiences are extremely disruptive, especially if the cause of the experience remains unresolved; if the sufferer is not yet ‘out of the woods’. I went home from the hospital in May to three months of paranoia and sleeplessness. Several times a day I checked my face in the mirror, grinning manically to ensure that both sides worked and that I was not, as I feared, having a stroke. I lay awake at night, bone pain and head pain coming together to remind me that my body was a mistake. I slept best during the day, and even then only if my daughter allowed it. Beautiful moments with my husband and my child were punctuated each time by grief; by anger and sadness that this was not forever and perhaps not even for now. I tried to beat Death to it, telling myself that I was going to die young and all of a sudden, and that there was nothing left to do but wait. I sat at the grave of my husband’s mother, who died young of cancer and left her children to grow up without her, and asked her to put in a good word for me up there. I was convinced that I was already trundling down the very same path as her.

And in all that time I almost never cried. I was too dead-locked by what I believed to be the ugly reality of human life, that we are here for no reason and close the circle when we die for no reason. I was trapped in a rationalist stalemate, that if my husband’s mother died and if factory farming continues and if people all over the world are suffering and if some babies are born just to feel hungry and die, what right did I have to ask for life? To be angry over my lot? To even hope for better luck? I was spoiled already, my good fortune had been too potent, the only thing that made sense was that my life become a series of losses until the end. The universe has to balance things somehow. And so I couldn’t even cry, because what room was there for self-pity in a world where worse things happen? I became wordless and emotionless, persisting and wading through the heaviness and ugliness of truth.

Or so I thought.

It was such a nightmare. I am still not certain how I got from there to here; part of me is genuinely afraid that if I try to look too hard and retrace my steps in too much detail, I’ll get sucked back into it all again. What I can say is that I did a crash-course in psychotherapy, four hours a week throughout the month of August, and felt after 17 hours of therapy like my lenses had been recalibrated; like the same pain and weakness mattered less; like I had been set free. My last session was an outpouring of tears and I still cry frequently now, when I sink into cloudy recollections of what that time was like. They are tears of self-pity, yes, but they are also tears of gratitude, that I am even in a position to be able to say I was.

I no longer check my face in the mirror every hour. I no longer lie awake at night, aware of the biology which keeps me alive. Experiencing symptoms no longer sets off a spiral; instead I can work through the pain until I forget that it’s there, emboldened by the power of the mind. The moments of pure beauty which punctuate my life are, for the most point, untainted by grief. And I believe, more than ever before, that I am capable of the challenges ahead.

“You were assigned this mountain to show others that it can be moved” is a quote my older sister recently showed me. She is much better at coping with hard times than I am, and so much better at being happy. I know that at least part of it is due to a faith she has that her suffering is not arbitrary. There are so many things I have learned about the costs and the benefits of living with chronic illness, and so many things I will learn in the year to come about striving for happiness and greatness with it, too. I will share it all with you, in the hope that you come to believe in the marginalisation of your own illness as well.

Lynn

Twenty-Four

It’s 12:11 AM in Austria, and I have just turned 24.

My birthdays are usually marked by the end of a school year or an exam period, but during pillow talk with my husband just now I realized that the full stretch of my time as a 23-year-old is the longest I have gone without doing a single piece of academic writing. My last degree assignment was handed in on the 11th of May 2015, and I haven’t done anything that would count as ‘work’ ever since.

Instead of CV-building, I spent my year being pregnant, getting married, having a baby, and raising that baby. I wasn’t intending to have a year-long maternity leave, but now that I’ve seen how badly Ehlers-Danlos Syndrome has interfered within this period I’m convinced that deferral was the right decision. Nevertheless, I’m awash with birthday blues: I didn’t want to turn 23 when I did, and I don’t want to turn 24 now.

Maybe it’s inching towards the milestone that is one’s mid-twenties. Closing in on it serves as a constant reminder that by now I should have had a dozen internships, and should have drawn my education to a close, and should be paying my own way already.

I fully realize that my problem is not an isolated one; that it is a generational phenomenon, this extended adolescence. Half of my parents’ friends, all of whom benefited from illustrious careers in the oil industry dating over 30 years back, are once more housing the offspring who had left years ago for university. But it is so much easier for me than for the rest of my generation, to take this time guiltlessly and spend it exlusively on raising my child. Part of my birthday blues stems from precisely this – that 24 seems so old for me not to be standing on my own two feet yet.

I’m a year behind already because I was expelled from school at the age of 16 and took a life-changingly pivotal and useful year out to pick up the pieces. I am at least partially in line with the ‘gap year’ contingent. But I’m in the middle of my second gap year now and can’t shake the feeling that I’m a bit too old for this life stage. I’ve found my spouse and had my first (and possibly only) child, which is more than I’d ever imagined I would achieve by this age, but I’m painfully far behind in all other facets of life.

At what point did birthdays become less a cause for celebration than an opportunity to measure the adequacy of one’s current progression in life?

As much as this break irks me, I know that I can’t have it any other way without making major sacrifices. I could take the first job which comes up, put Clio in daycare, and skip out on my masters degree, all while doing nothing to address my physical deterioration. I am fully and guiltily aware that there is another me out there, somewhere, for whom this scenario is the only available option.

But I’m not her. So instead I live in the center of Vienna, out of my husband’s support. I sleep as much as I can (although, from what feels a little like PTSD, I rarely sleep much). I feed and hold my baby, but am often left alone thanks to my husband and the friends who have stepped up to help. I do no housework, collapsing on the sofa while my husband cleans up after me and tells me firmly not to contribute. We take walks late at night, at a slow and easy pace. I interact nervously with strangers, acutely aware that they don’t know my context and, as a result, don’t know why my hands tremble as I handle loose change. And so my husband often takes over, allowing me to fade into the background as I please. We hug wherever there is physical and temporal space, feeling the miracle in each moment. And when I keep him up with worst-case-scenario talk at night he listens and diffuses, no matter what he has in store for the next day.

I will never know what I’ve done to deserve this easy ride in life; and it is because of this that I can never, with a clear conscious, complain about any of the recent catastrophes relating to my health. I am even reluctant to accept the status quo as mine. I have learned with more force than ever that nothing is fixed.

So I watch the number pass me by.

24.

Everything I have ever achieved has been in debt to someone else.

When will I be too old for this scenario?

Or worse, will this illness lock me into this mode for life?

-L

 

 

Home & the fairness of being sick

A week ago today, I was in bed with my husband and daughter for the first time since being released from the hospital. It was an unsettling homecoming; I’d been offered a longer stay and would have taken it, if my husband hadn’t been so eager to leave. While we waited I made rounds in my room, pulled up a chair to the gigantic window, painted my nails and watched the huge and ancient trees outside my window sway. It was a space I’d been grateful for since day one, with a routine which I’d grown accustomed to. Packing up to leave felt odd, and while waiting for our discharge papers I curled up one last time to sleep there.

The doctors and nurses gave incredibly friendly goodbyes. We knew we’d be seeing each other three days later, which made things a little less heavy. They adored my daughter and coddled her one last time, and then left with resounding orders to call them if anything went wrong. My father-in-law came to pick us up, and took us straight to their townhouse in the center of Vienna for a barbeque in honour of his step-mother’s birthday. My daughter screamed for the majority of the car ride, unable to cope with the jarring change of scenery. She screamed some more when extended family members overwhelmed her with attention. I sat down to a meal, wearing the only clothes I had – the black tank top and floor-length skirt that I had thrown on during that terrible moment, when I was waiting for an ambulance and choking on my blood. It was as strange as everyhing else had been during the six days that preceded it.

I dreaded going to sleep before we had even reached the door to our central Viennese flat. I walked into the room where I had walked around in circles, trying with all the power I had to avoid teetering over the edge of a panic attack. It still bore the chaos of that night, in the clothes and books and dishes which were strewn over each surface. My husband had been back several times since, transferring clothes and food so that he could stay fresh in our hospital room. But the last time I had been there I was sure that I was going to die.

When I walked up to the bedroom and eased onto the mattress, I saw the corner of the sheet which I had first stained with blood, when I turned on the light and saw that my hands were covered in red. There hadn’t been more than three hours in this flat between my arrival from the airport and my departure in the ambulance, so every corner of it reminded me that I was still susceptible to sudden death.

When the time came and we lay together side-by-side, my husband was kinder than I’d ever expected. He’d been getting distracted, he said. He’d been resentful in spite of having, at 25, the kind of love that many people dream of. Things will be all right as long as he never allowes himself to forget what he has again. It was a story I wanted to believe. Instead I told him about my own, darker understanding of events; about the sheer randomness of my near-death experience, and simultaneously the perfect sense it made. I’ve been so lucky for so long that I’m overdue a life-destroying catastrophe.

My husband disagrees vehemently, but I know I’ve won a brilliant lottery in life. I was born in a part of the world which guarantees my basic needs. I have a mother from the other side of the globe, who allowed me a distanced perspective on what culture really is. My father has given me a life which is vastly inaccessible to most of the world, and is still securing me now. I’ve lived all over the world, attended international schools, been free to spread my wings.

But more important than what I’ve been allowed to see is what i’ve been allowed to feel. I’ve been miserable and alone, I’ve dabbled in self-harm and bulimia from the age of 11. I’ve had my humanity ripped away by societal sexualisation and familial neglect, and spent the majority of my teen years reeling from the impact. I’ve gone from being a well-liked, intelligent, pretty and popular child, to a suicidal, overweight, academically dismal and socially leprous teenager. I’ve fallen into a passionate love which was challenging and illegal, with a guy whose only purpose in my life was to get me back on track.

And so I’ve felt what it is to be empowered again, to return to the school that kicked me out, to recieve awards in front of the same teachers who had, a year earlier, ejected me from their classes and dismissed me as a lost cause. I’ve been admitted into the universities of my dreams, twice. I know what it’s like to grow heavier and heavier and feel utterly powerless as it happens, as well as what it’s like to start from zero at the gym after five years of being overweight, and sweat myself out until I’m slender and strong and unrecognisable. I know what it’s like to start anew in a city where nobody knows me, and find that everything I thought I knew about myself was a lie – that the friends I made could re-write me as funny, and mature, and passionate, and athletic, and attractive. I know what it’s like to meet the guy who I think is too good to be true; to be seduced and to let go and dive in; to find that this too-good-to-be-true young man is serious, and he’s booking us plane tickets to travel the world within two months of meeting; to find, at every turn, that his love is real, that he has planned, with no subtext and no doubts, a life in which you are the center. And I know what it’s like to have a baby by that man; to be filled with worry from the very beginning and to see, when that baby came out flawless, that the universe has given you permission to be happy.

I am in an extremely privileged place now. I found the love of my life at 19 years old. I married him and had a perfect, beautiful child at 23. I’m four months away from the best education that the world has to offer. The parents I used to despise, and who used to despise me, are now here for me, making everything possible while I try to find a place to stand alone in the world.

How could I possibly complain about anything?

If EDS kills me, it’d be the balancing act which gets me back to zero and makes up for all the people in the world who never got the chance to know security or joy.

It’s an approach which made me anxious on that first night, in a self-absorbed kind of way. Sensible as it may be, the prospect of death still destroys me. I want to have my first job and rent my first flat from my money alone. I want to see my husband out of this limbo, making an impact with his brilliance, happy. I want to see the girl and then the woman that my daughter will become.

So I’ve struggled, being here at home, pretending to be normal, trying to sleep at night when the second I’m lying down in the dark I’m aware of my breathing, listening for that angry gurgling in my lungs, looking for the blurriness which comes with stroke. I slept only two hours at a time for the better part of a week, because before long I’d be awake, panicked by the thumping of my heart. There have been entire days where I feel like I’m on the edge of a yawn and, no matter how many times I try, can never seem to breathe deeply enough. At times I won’t get out of the house until it’s late afternoon, and then by the time I’m on the street I’m craving my bed again. I don’t sleep, but I lie around staring at the ceiling and fearing the insides of my body.

Throughout, my husband has picked up the slack I leave behind. He takes our daughter for walks so that I can sleep. He cooks and cleans and does his own work from home on top of it. He makes phone calls on my behalf, looking for the psychiatric help which will get me sleeping and unafraid of living again. My daughter, meanwhile, is more anxious than ever – awake throughout the night after three full months of sleeping right through. She panics if we leave her range of vision, and sometimes panics if it’s simply not me who’s holding her.

The rhythm of our lives has changed. I see others and envy them, for their normalcy, their lack of fear, the trust they seem to have in the permanence of their lives. And at the same time I feel a new energy struggling beneath the weight of all this doom. I’m writing more in the past two weeks than I have in the past year. Fiction is stirring in my brain again. My husband hugs me tighter, twines his arm around me on the bus, holds my hand on the street, looks for kisses and recieves them, gladly. We can’t bridge the last gap and consummate that love. I have no idea when that will be possible. Sometimes I wonder if it ever will be again. But it is like we have woken up; like even that constant love-making was part of a catatonic dream.

If I never have a pulmonary hemmorrhage again, this may one day turn out to be a blessing.

-L

Bleeding Lungs: exist at your own risk

And so I’ve spent all of my first week in Vienna orbiting an oxygen tank; a hospital bed; my small and traumatised family.

I’m all right here. I feel semi-safe. But I’ve never been in a situation in which no protocol exists for my ailment – in which not a single professional in this building knows what it is, why it happened, how to treat it, or how to even prevent it.

And so I sit here, day after day, feeling unprotected and hopeless, even in the one place where I am most likely to survive.

I have had a very hard time, coming to terms with this new dimension of my condition. I’ve disintegrated when no one is looking, wondering if I’ll get to see my daughter grow up, or even if I’ll last long enough to make it to university this October. I’ve slept in short plunges during the day, and woken up at 9pm sharp each night for long sessions of insomnia.

I woke up last night gasping, snapping into a sitting position, torn apart by directionless panic, looking wildly around the dark room. Everything was blurry, my eyes were failing, my brain was bleeding, I’m having a stroke, I’m having an aneurysm, press the button but will the button save me? Will the doctors who rush in be able to stop it? Will they even be able to discern what is happening before it’s too late to act?

Instead of pressing the call button I pressed the light switch. I put on my glasses. The room cleared; smudges sharpened into lines. My eyes were all right. I was, as far as I could tell, not on the immediate edge of death. But my face did tingle, my lips did suddenly feel separate from the rest of me as I pursed and pouted and stretched them into a smile to ensure that both sides worked. Was I then, as I’d imagined, on the edge of a stroke which would drive me towards the edge of death?

I would ponder that question, restlessly, all night. I am still awake now as I write this, having failed to ever close that tortured inner monologue. I want to swipe the past six days away and return to a week earlier, when I did 100 burpees and ran 2 kilometers and could see my old body re-emerging with even harder edges than before and when the only thing I had to worry about was my increasingly unstable joints. I want to banish this condition, escape these episodes. But I realize that Ehlers-Danlos Syndrome is so intricately woven into my body – in some ways it is my body – that to do so would mean banishing the connective tissues which allow me to exist.

How do you cope with the possibility that sudden death could take you, in a single moment?

How do you cope with the knowledge that there is no cure and that nobody can help you?

How do you continue as a mother and a wife when everything you are is being ripped apart by uncertainty?

On Friday night, my husband and I made love again. This time more gently, but this time I was ahead of myself, lost in the emotion, falling over the edge of excitement. My heart throbbed dangerously up against my throat. Blood rushed deafeningly through my ears. And when it was over, I jolted out of bed and dressed to hide the encounter beneath my clothes. From the metallic taste alone I knew immediately that I would have to call for help.

My lungs gurgled angrily, deep inside my chest, as I breathed. I was not coughing or choking but I knew what had happened and it terrified me. The first nurse heard nothing and believed none of it; but I forced myself to cough red into napkins and was immediately taken seriously. The head doctor that night was an authoritative woman, Meryl Streep-like and at least twice my age, who comforted me like a child with her hand on my back. It felt strangely right, and strangely wrong, to be both a mother and the poor young girl that she regarded me as in that moment. At the time she felt sorrier for me than I did for myself. I suppose it’s because she felt powerless, too.

And so I now know that orgasms may kill me. Those early days in the spring of 2012, when my husband and I were still new to it all and drawing all the passion we could out of our overpowering chemistry, stand out in my memory like a cruel joke. I’d thrown my body into the relationship long before my heart and broken down each gendered assumption with my desire. I discovered that most obscured component of my Self – a lover who finds ultimate freedom in those private corners, and indulges almost obsessively because it is one of the greatest gifts of life. A couple who, four years and a baby later, still sexes each other to sleep each night.

I can’t even begin to describe the soul-destroying pain of desiring him and knowing all the while that it could cost me my life.

So here I am now. No one can help me. All I can do is try to help myself. No breastfeeding. No salt. Low weight. Strong muscles. No laughter too loud, no crying too deep, no fear too petrifying, no orgasms at all.

But to be monochrome and monotone – is that really what life is for?

The head doctor came in to see me at 1pm, trailed by nurses who fawned over Clio. My husband explained that we would like to leave now. “If you are not feeling so good you can stay another night,” she said meaningfully, “or two nights, or however long you need.” She then agreed that if I leave and don’t feel good I can always return. My main problem, I told her, was sleep. Nights scare me so much after what has happened that I wake up thinking the same thing that happened to my lungs is happening to my brain.

I waited for her to make a suggestion; to make some empty remark about how it will ‘all be better soon’. Instead she cast sorry eyes on me, her own despair apparent. “You’re so young,” she said regretfully, again just as clueless as I. I watched her. On the inside I wailed Is there nothing you can do? On the outside all I could do was nod silently in agreement.

“So young,” she repeated, and then she turned back to the group conversation.

Yes. I am. I am not even 24 and my body is trying to drown itself. How can I expect it to last me another 60, 20, even 10 years? How can I go home and not be scared of the fact that there won’t be doctors a mere button away? How can I stay here and not feel equally unsafe, when said doctors don’t have a clue what it is they’re dealing with?

I’m sitting here in the bed I’ve occupied for six days now, too fed up to cry.

Bleeding Lungs: mind vs body, body vs body

Today I was told by the doctors in the ward that I could go home. My blood test results, which they didn’t expect much from, wouldn’t be ready until the following Tuesday, and they had no idea what to do with me ’til then.

“Don’t they want me to see a rheumatologist?” I asked my husband, feeling alarmed.

From their correspondence in German he relayed to me that “the rheumatologists in this hospital have seen the info but don’t know what to do with it. They said there’s nothing they can do.”

“What about the doctor who diagnosed me?”

“They called him three times. When he finally responded he said he doesn’t know what to do.”

“So he isn’t even interested? He doesn’t even want to meet?”

“He said we can seek an appointment with him if we want – but he doubts he can help you.”

I was bogged down again by hopelessness, but by now it’s a feeling I’ve grown used to. The doctor who diagnosed me is the highest professor of Rheumatology in the country, and even so, when I met him in my 17th week of pregnancy last July, he had to google ‘EDS and Pregnancy’ in order to be able to write something helpful into his report.

So there was nothing left. Blood test results that they expected nothing from. We would have gone home, I suppose, if my husband hadn’t become sick with food poisoning the night before. Instead, because neither of us were fully capable of caring for the other or our child, it made sense to stay just one more night.

It was strange – the only useless word which enters my head to describe this. Strange to be in this hospital room, sleeping in separate beds, doing the work of keeping ourselves and our daughter sufficiently alive even if shattered. Strange to have been thrown into this situation after being physically apart for 3 weeks, and mentally distant for much longer. No chance to re-adjust to life together; we had certainly tried, tangling ourselves up in my first night at home and making slow love which so overwhelmed me that my heart hammered and a pulmonary blood vessel burst.

So tonight as his father asked the difficult questions, I thought about what this meant. Many tiny ruptured blood vessels. One medium-sized one. Bleeding so severe it spurt up through my trachea and left barely any room for air. The direction of my condition seemed clear. The incurability of Ehlers-Danlos Syndrome seared my mind. I stared head-on at the realization that this may happen, again and again, worse and worse, until finally one day there’s so much blood that I can’t breathe and then, in one microscopic moment, that’s it, life over, everything I’ve found and built and felt and loved left alone to dissolve or exist without me.

“You must always be in proximity to a hospital,” his father said thoughtfully.

Yes. No more faraway hikes or bike rides. No seeing the outermost corners of the world.

“This is very unpleasant news,” he noted.

Yes, yes it is.

And then the philosophical questions about death; about whether or not to fear it, about the futility of fearing it. I addressed the conversation from a place of abject numbness, as though building the soundtrack for my funeral.

So when my father-in-law left we stood together in front of the bathroom mirror, covering our shared trauma in a smearing of weak humour. “On the bright side, once this is all over you can find a new wife who will save yourself all this trouble,” I said with a smirk.

“Do I get to keep Clio?”

“Depends if I’m around to share her or not,” I said, leaning over the side of the cot to kiss her cheek.

“Don’t… say that…” he said in a faint protest, which started full of humour and ended with hurt.

As I lingered at my daughter’s cot he emerged in the bathroom doorway, tall and solid and approaching like a wall I couldn’t pass.

“It’s just a joke,” I said dismissively, suddenly unable to make eye contact.

“All right, then,” he said with a tired humour, “fine. None of this matters because if you die I can just find someone else.”

“Yup.” I smiled awkwardly and made to slip past, accustomed to our current phase and its physical frigidity. But a strong arm locked around my shoulders from above, and my husband drew me into his chest, and he squeezed with a passion which was almost unfamiliar. “How could I ever find anybody like you?” He buried his face in my neck and breathed. “How could I live without you?”

I hadn’t been receptive to the seriousness of the words, or the embraces which are usually, these days, so fleeting. I was still in a light-hearted, make-fun-of-it-all mode, and waited to be released so I could move past him towards the bathroom and casually brush my teeth. But with his tall, quiet certainty he clamped his hands onto my upper arms and led me backwards towards his bed; he lay me down and lay his body over mine; his weight soothed me, easing me into the mattress; and he kissed me like the very first time, over four years ago, on a spring night in his student flat in Edinburgh. “I love you,” he broke out through tight chords of hurt. “I can’t imagine a life without you.” His kisses deepened. “I don’t think I could do it.” Words breathed into my hair, the despair in each of us too much to sustain a moment more of eye contact.

We did all we could before Clio began to cry. But an hour later, when she was asleep, I slipped out of my hospital bed and rounded the room towards his, woke him with caresses and dove straight into the ritual we’d begun, breathing ‘I love you, I love you, I love you’ a thousand times over into the dark space around us.

It was strange. Ending, lying together in our hospital room, in his hospital bed, the large and ceiling-high window open to the almost tropical pattering of rain in the night outside. My heart thudding hard, my lungs threatening to dissolve, my center still silk-like with the after-effects of pleasure. I lay next to him, his head on my chest, my chin in his curls, and felt that finally, for the first time in so long, we were stripped raw and fused together, the agonizing love in both our bodies drawn out and mingling. A cloud around us, formed by our expanding souls.

And I cried.

I’ve been crying in private. I first cried at this hospital when my emergency care was over and I was on a bed in a room with two elderly women and my baby, in her stroller, fast asleep. I had no idea that we’d get to stay here together. I still thought she would be going home with my husband; without me. I felt the tearing pain of my broken body and my motherhood, sparring. She whimpered in her sleep and I moved the stroller back and forth from my curled position, chin on knees, knees to chest, hollowed. She needed me. I couldn’t help. I couldn’t be her mother. I have never hurt so bad from sickness.

Since then I’ve cried on and off when I’m on my own, when I finish a phone call with my parents or an online conversation with somebody else that I love. But I’ve never cried in front of my husband. I’ve felt guilty and ashamed for bringing him back into the very same hospital when he’d been, so often as a boy, with his terminally ill young mother. I’ve felt unworthy, unattractive, a person tethered to him by circumstance, rather than a person that he’s chosen to love. So my eyes and my emotions dried up around him. I couldn’t even cry if I’d wanted to.

And there I was, finally, in his warm arms in the dark, the rain cutting through the night outside, feeling hot tears in my eyes. It was the most cathartic experience I’ve had in a long time; possibly since before Clio was born. It was the first time in months that I felt his love for me and knew that it was real, that I was safe, that my life was not a sham. So I cried, feeling the weight of the days and the bad news and the fear rise up in a lump in my throat, and I allowed a tremble to betray my emotions, knowing for sure that I finally could. I cried and he held me closer, asked me what was wrong, understood when I said “nothing new,” and guided me back to calmer breathing. I felt more understood, more light, more cradled than I ever have before. And we held each other, caressed each other, and breathed together like we were still those first-year university students, minds vacated of all but each other and the moment, discovering with our hands and our lips what love really is. So I cried, because it was so beautiful and so couched in an atmosphere of death, of normalcy waning away. How long would we get to bask in this? It was so strong and overwhelming that I dreaded the end of the moment too much to enjoy the moment itself. As it happened I was already grasping to hold on to it, knowing it was just a taste, a pause in circumstances of blood and tangible mortality.

I’m alarmed by my body’s fragility. By my close proximity to death. By making love to my husband, after it triggered such a deadly catastrophe. But I also remember the way I coughed on my back in the dark in our apartment, my husband’s voice as he said “that doesn’t sound good,” my realization that I needed to turn on the light, my shock at seeing that the spittle was wet, deep red. The way my body fought for life in spite of the blood vessels that failed it. The way I, in spite of it all, somehow managed not to panic and breathe, breathe, breathe. I know the body has precedence over the mind; that it can drag you and your consciousness kicking and screaming from this world, no matter how determined you are to live. I’ve witnessed it second hand with the death of two family members. But there is something to appreciate in the struggle. The feeling, perhaps, that although it is a genetic disorder which touches every millimetre of my body, it and I are on the same side.

Can we talk about beating this,  the way we would talk about beating cancer or ebola or pneumonia? Can you beat a fundamental and irreversible flaw in your design? Can you even contain it, when such weak spots are so deep inside that nothing we can do won’t be disruptive?

So many questions. So much rage. I can only go to bed.

Bleeding lungs

Last night was the scariest night of my life.

It was dark, it was past midnight, I’d just arrived in Vienna, we were tangled up together after spending almost 3 weeks apart while I attended some routine appointments for my daughter in Scotland. My heart was racing, I began to cough hard, and when I turned on the light there was blood in my hands.

Cue making circles around the room, struggling just to breathe, while my husband called emergency services for an ambulance. Trying to get dressed while my head threatened to descend into panic. Those sudden, certain thoughts that I was going to die. Looking at my husband as he ascended the stairs to dress my daughter, trying to sear an imprint of his image into my mind that could last me past my death. The way my daughter’s cries ripped through my soul.

Three paramedics appeared just as I was calling my parents to tell them what happened and, potentially, to say goodbye.

I was given oxygen. I was taken to an ambulance. I saw the inside of an emergency room, blood drawn from places I’d never before thought were routine, the small bones in my wrists screaming with pain while needles dragged against them. I breathed, again and again, for people who wanted to listen. I felt the angry gurgling of blood, thick in my chest.

I had a CT scan; I was told I could not feed my baby. I wondered if this would be the end for us, and shoved that sadness into a deeper place so that I could exhume it later.

I felt the sudden heat from the injection, tried to breathe in and out as instructed, and when it was over, I saw the half-dozen staff members who’d been treating me, huddled around the screen in confusion.

“Your lungs look very worn out,” I was told by a confounded doctor. “Have you had a serious infection before? Bronchitis?”

I told them I had smoked, “when I was an irresponsible teenager.”

“This isn’t what smoking does. The only way your lungs would look like this is if hundreds of tiny blood vessels decided to bleed at separate times. And that you can sit up and talk with your husband normally makes no sense.”

“I can run!” I said, dumbfounded. “I can do 10-hour hikes. What you’re saying makes no sense!”

“I agree,” he said, shaking his head doubtfully.

By then my husband had appeared with my daughter. It had been two hours since I’d watched him ascend the stairs, thinking it would be the last time I saw him, and I sighed with a deep, sad gratitude.

Initially I was placed in a room with two others – both older women who looked like they had smoked too much- and when my husband left with the head doctor to discuss my medical history, I sat in a ball at the foot of the bed and reached out to sway my daughter in her stroller so that she wouldn’t cry. It didn’t take long before I was crying, myself. When would I see her next? How would she cope without my milk? Would I get to see the woman she becomes? Would she have to grow up without me?

It wasn’t long before I was removed from the room and placed into my own. “You’ll be alone with your baby,” the nurse said, to which I sighed with relief. When my husband and the head doctor re-emerged, we organised diapers, formula, a breast pump and a baby bed. We spent most of that night awake, trying to feed my screaming daughter formula. When I held her she closed the material of my hospital gown into her fists and made for my breasts, and I felt the most atrocious pain at having to refuse her. And so I kept her at arm’s length, to prevent her from getting any ideas, and I spoon-fed her water to replace the tears streaming down her face. It is difficult on a deeper-than-primal level, to watch your child cry and feel afraid to hold her.

“The head doctor is convinced that this is your EDS,” my husband informed me, “given the diffuse nature of it.”

“Yes,” he said, walking into the room. “I don’t think any of the doctors in this hospital have seen anything like it before. We’ll get you seen by as many people as possible, but you may need to follow up at the University Hospital. I’m sure all the researchers have never encountered this in their entire careers and will want to know more.”

Great. An elusive problem. All there is to do, I suppose, is stay alive and wait.

 

 

 

 

 

 

On being uprooted, step by step

The clock has just struck 12 and it is now the 1st of May.

I’m in my Edinburgh flat with my parents for one night, and it’s been over five months since I lived here properly. On December 14th I was taken for a four-day stay in the hospital and from then on, my time in this place was limited to one or two or three-night stints.

I’m lying here in bed with my tiny sleeping daughter, 19 weeks and 5 days old, feeling like a stranger to this place. The fact that my husband is not here with me, but at our temporary flat in Vienna, adds weight to the sense that an era is ending for me. This is the bed where my husband and I woke up each morning to go through the motions of our final year at university. How is it possible that I slept here each night, first to study and then, when the studying was over, to say long goodbyes to my closest friends while writhing for full days in morning sickness? Or, when the summer had gone, to live out my last few weeks of pregnancy with shopping and cooking and maternity yoga and watching every movie in the cinema with my husband?

I’m listening to a song I played on repeat during those sessions of morning yoga. ‘What’s going on’, by A Perfect Circle – a band I’d loved since my Egyptian ex-boyfriend introduced me to the band in 2008. The song is old, but to me it was new, because while I waited for my life to change irreversibly I sought a reconnection with the earlier, teenage me, and the music which that teenager loved. Now it is embedded in the feeling of those days, when I had all the space and time in the world to enjoy the growth of life inside me, and it makes me shiver.

Have you ever felt sick with nostalgia? Nostalgia so heavy it threatens to split your breastbone down the middle?

Between September and December time slowed into a steady stream. One day blended into the next. I had midwife appointments and doctors appointments, and those little milestones were the only things which gave structure to my life. One warm September day, after an appointment with my obstetrician at the hospital, I boarded my bus home in the wrong direction. I was alone; nobody missed me at the flat and I didn’t have another appointment for several weeks. So I shrugged, played music on my iPod, and enjoyed the scenery as the bus drew me further and further from the city centre, through sattelite towns and untouched fields. I was in the front row of the upper deck and bathed in sunlight. It took me two hours to do the full circle back into the city centre, taking me past the student halls where I’d lived in my first year as a student, but I didn’t care. I’d bought eggs and milk from the farmer’s market in the hospital lobby and all that was left for me to do was go home and cook them.

During the time I was there alone, there were days when I didn’t leave the flat. I filled them with Arrested Development and sewed together the tiny moth-holes which had eaten into my cashmere sweaters while I travelled during the summer. I researched pregnancy nutrition, cooked huge batches of healthy vegetarian chilli and curry, and made green smoothies every morning. I read a book on Yoga for Pregnancy and Birth, and watched a montage of birth videos. When I did leave the flat, I walked through the residential grounds where  I had spent my first year in Edinburgh and my first year away from home as a University student, and, pregnant belly in full view, climbed Arthur’s Seat like I had so many times before.

When my husband joined me in the beginning of October, he was working on a research project for the university. In his spare time, however, we made a habit of frequenting the movies. We saw The Martian, The Lobster, Sicario, Suffragette, Spectre, Macbeth, Carol, and Krampus. I don’t know what the order was, but we huddled against the cold air on our way there and held hands as the movie played, and it was when we were able to turn off that we felt the closest to each other. On Halloween, we took a long walk through the city – transformed, by its reputation for ghoulishness, into a kind of macabre carnival – and surveyed the costumed drunkards who roamed the streets. The night was cold but not windy, and pubs set their tables outside on the streets so that spectators could drink and take in the excitement. We went to the Whiski Rooms, which loomed above Princes Street, and had Sticky Toffee Puddings. We had no friends to celebrate with, but were perfectly fine with each other, witnessing the moment together.

As December neared, I woke up one late morning to find him erecting a small and gangly Christmas tree in our living room. We wandered Edinburgh’s Christmas Market in search of decorations for the tree and he spoke German with the vendors in order to haggle down the price. We ate waffles and I took two tiny sips of his mulled wine, and we laughed and played around like we did when, several months into our relationship, I decided to let go and dive in and we became madly and giddily in love. When we bought candles for the tree (my first time lighting candles on a tree, a slightly unnerving event), the sight of it was so warming that we happily spent the night in our living room, reading and writing and coexisting in a blissful peace. “We have to take a picture with Clio under it when she arrives,” he said enthusiastically. It pained me that we would not get to spend Christmas with that tree, but would be abandoning it for my parents’ house up north. After three winter breaks from university spent apart in our respective family homes, it had been our first christmas tree together, and our first as a married couple.

At the start of December, I began seeing a Chirporactor to resolve Clio’s breech position. I would take the long busride into a beautiful part of Edinburgh that I’d never seen before,  and spend half an hour being tapped and massaged into a better shape. My husband would be there to meet me outside when I was done, and we’d walk back together in the moist Autumn air.

I had thought I was due to be induced on the 7th of December, but was instead told that because my daughter had not turned, we were at risk of a c-section. So we researched all that we could about breech babies and how to turn them, and during a walk home from another chiropractic appointment, we entered a leisure centre only five minutes from our flat and bought 12 days of membership for only £12. It was a beautiful swimming pool with a victorian glass roof above it, so that if you floated on your back you could see the clear sky or the rain pattering above you. We gathered our bathing suits and showered, and because of the allure of my large, high belly, ended up speaking with a middle-aged woman about birth, breastfeeding, children, and the rest of our lives. We swam together, my husband holding my legs up as I did hand-stands in the water and willed my daughter to turn. We came home feeling wonderful, and had been all set to do more swimming if it weren’t for the appointment on the 11th of December which turned everything upside down.

I remember calling my parents on the bus back from the hospital, feeling like everything was falling apart. I remember having to speak to each of my parents separately, explaining each detail – small head, smallish body, no water, emergency C-section in two days – within earshot of half of the people around me. I remember feeling, just from his body language, that the gentleman in front of me was listening in closely. And I remember, when he got off at Princes Street, turning around to say to us “I hope everything works out for you two. You’re in good hands over there, I’ve been working with them for years.” I remember feeling absolutely raw as I looked up and thanked him. We returned here, to this flat, but what happened that night has exited my mind. It must have been nothing but stress.

I swam only once more, the Sunday morning before my C-section. I remember feeling like I had lost the moment, like things were happening faster than I could work to change them. I remember being angry with my husband, because he had refused to give me extra room in bed the night before and had necessitated my transition to the bed next door. I remember being sad because our day out at the Christmas Market, giggling and enjoying, was the last time we’d been so carefree and happy. I remember feeling like it had come too soon, no labour, no preparations, just a sudden date on the calendar to demarcate the slitting open of my body. And all the same, I wanted it to be over.

Our days in this flat come back to me often, and I remember them with a sad nostalgia. Even at the time, as we took walks on grey and sandstone streets, strewn with autumnal leaves and dark, curled trees, and I said to my husband how I’d love to live in one of those stone houses with a garden so close to the center of the city, I could feel the subtle, tearing knowledge that our time there was short-lived, delicate, soon to be over. We would not live in one of those stone houses because my husband didn’t want to settle here, in this city I’ve grown to love so much. I realized that even a few months from then we’d be living with my daughter in Vienna, and that once my year in Oxford ended, there’d be no knowing were we would end up next.

But this isn’t the worst part of what I’m feeling now, as I sit up in the bed I bought nearly four years ago so that my husband, then boyfriend, could sleep alongside me each night. The worst part is that our last few months in this flat were free and absolutely beautiful and a privilege for expectant parents, and yet they were wasted on stress. My husband agonised over his situation, in limbo and unable to start the career or further study which our friends were all currently investing in. I agonized for him, beginning just as strongly to feel guilty for the ample time we spent doing basically ‘nothing’. There was joy, in bits and pieces and tiny drops. But often we kept to ourselves, too nervous about the direction of our joint life to speak those worries out loud and make them real.

When I came back here today and surveyed the space, my heart hurt. This flat has our lives all over it. Our art is on the walls, my exercise ball in the corner, my maternity yoga drawings still blue-tacked to the wall beneath the mirror where I practised. Our books line the shelves and the desk, reminding me of all the things I intended to read in that time and didn’t. Our folders, titled ‘International  Political Economy’, ‘Black American Fiction,’ and ‘Dissertation’, still lie here in piles, the work untouched as though we had shuffled through notes during essay-writing just yesterday. A tortoise-shaped clay teapot, bought in Singapore the summer before I began at Edinburgh, perches on an open shelf in our kitchen, while at least four dozen wine and beer bottles, consumed throughout our time here from September 2014 to December 2015, line the top of the cabinets.

We are everywhere in this flat. Traces of us, our thoughts and concentrations splayed onto lined paper, notes shoved into binders, books shuffled into shelves, clothes put on and shed off, the pull-up bar we used to keep ourselves strong, all lie here. This is my home, the one place where I am most concentrated and where my heart and soul are stored. It belongs to us, we designed it, we furnished it, and it will be here, no matter where I go. So it is no surprise that it agonises me, to come here and feel like I’ve been forced to leave it behind.

We came here today on the premise of collecting some final items to bring to Vienna. I saw the kitchen, empty of food, its cups and glasses and crockery unused. I walked into the closet and saw some of my neglected clothes, strewn and hung and folded away in drawers. I saw the empty hangers where my husband’s used to stay, before he took them, bit by bit, to Vienna. And it dawned on me once more that, while I an rooted into this home, my ties too rigid to cut, he has vacated this place readily and even enthusiastically.

My heart is heavy, as though trapped beneath the ancient wood of the foor. It is 2:35 AM, and I need to be up by 8:oo. My final sleep in this flat for a long, long time will be 5 hours, if not less. And then I will get up, and pack away the things I intend to take with me. More of my life, sucked out of this space. I will then rush to meet two of the few remaining people in this city that I knew in my years as a student, and introduce them to my baby girl. It will, most likely, be the last time I ever see either of them. And then what is left of my life in this city will, bit by bit, dissolve.

It wouldn’t be so bad, if I felt that I had a home besides this one.

L.

 

Underdog

Sometimes I forget that there’s anything wrong with me. I’ve been getting plenty  of sleep – something which I know is not thought to be common among new mothers – and as a result that all-too-familiar disintegrating pain has been unable to seep into my limbs. I focus less and less on myself now that Clio is here. There isn’t any sitting around fearing the future now; if I’m scared, it’s because leaving clio for 8 hours a day to study or work feels unnatural and somehow criminal. Mommy guilt is here to stay, I suppose. But with pregnancy my post-diagnosis slump began to lighten, and now I have poured my heart and soul into the wish that my daughter can grow up to be healthy and normal. Worry for your child is unnerving; but unlike worry for your self, which can leave you paralyzed by hopelessness, worry for your child is electrifying. It shocks me into action. It becomes about what you can do, rather than a sad, slow ballad about what you can’t.

So I mean it when I say that she has brought me back to life. From December of 2014 onwards, I lived as though my faculties were already declining. I agonized over even the minutest signs of decay. Now I forget, until I wake up to hold my daughter and find that a finger’s out of place. I forget, until I feel the consequences of a gut which has begun to sink. At the time I become frustrated. I remember the degenerative effect of breastfeeding, and cling angrily to the attachment parenting that I know, deep down, I may regret enacting in the future. But for a while I was able to ignore what is happening.

My hip almost came out of joint recently. I was sitting on my bed in my parents’ house in Scotland while my Aunt and Uncle cooed over my daughter. Cross legged, I bent over to pick her up. But as I lifted her towards me my right hip socket balked in a hideous pain and my whole body froze in alarm, as though a wave of electricity had rattled its way through me.

Never mind, the voice inside my head said dismissively. I ignored the fact that I had almost dropped my baby and settled her in my arms. But it happened again. And again. And abruptly I gave her to my aunt, so that I could shift, in carefully demarcated lines, my femur back into place. There was a click, loud and heavy, as I shakily left the bed. It was back in place.

Maybe it’s a one-time thing, I’d told myself over the week that followed. I exercised without a hitch, but found my wrists and fingers swollen and floppy in the aftermath. And here I am, after my hip has yet again petrified me in alarm.

There is something demoralising about the slow decline. I don’t know where I’ll plateau, or what I’ll have to get used to. I am reluctantly aware that breastfeeding is an agent in this sudden, painful worsening. I feel silly complaining here when there are others of my type who move in wheelchairs and get their nutrients through an intravenous tube. I know I have it easy in comparison. But it’s still so new, this realization that I am not normal and that the normal, brimming, fast-pace life I’ve envied in others is probably never going to be mine. I am still thinking in terms of things lost.

I suppose this is one of the many functions intended for this blog. How do you come to terms with the realization that you are out of the normal race in life? How do I get over the internships I didn’t do, the thin list of extras on that goddamn CV, out of the ever-present feeling that I’d struggle from sheer exhaustion?

With my limited experience, all I can tell myself and others is that it is important to start  from Zero. You are an underdog in life, and everything you do with your limited energy is worthy of praise. So walk, eat, think, rest, whenever you can. Be a mother, a sibling, a daughter, a friend, and do it as well as you can. Do that course or that job or that project, even if it’s all you can do at the time. Living with a chronic illness or another disability is an extracurricular of its own. It teaches you pacing, empathy, humility, patience. Even getting enough sleep is an achievement.

The things you accomplish may feel small in number, but you are starting from zero. And you’ll find that if you accept this truth about yourself, and do things little by little, step by step, your accumulated efforts will yield greater results than you ever thought possible.

 

A note on breastfeeding

On thursday night in our apartment in Vienna, the three of us decided to watch Beast of No Nation (2015). The two-hour movie is about a boy in an unnamed African nation and his descent by war into the life of a child soldier. It seizes you with its spellbinding cinematography and takes you on a lobeast_imgng spiral into hell. Its plotline remains as ambiguous to you as it is to the child soldier himself, whose only choice in navigating the fog of war is to follow closely behind his ringleader. When he eventually escapes, you feel like you are coming up for air.

I can’t name a more profound film. My husband, on the other hand, felt that the cast were too dehumanized to stir up essential viewer sympathy, and found the descent into hell a little too long and windy.

Last night, in an attempt to demonstrate to me what he meant, he showed me Hotel Ruanda (2004). It depicts a sliver of real history from the Rwandan Genocide and puts forward real people in the midst of excruciatingly disrupted lives.

The contrasts between the two films are innumerable; Hotel Ruanda plays like a thriller, while Beasts of No Nation is a work of horrific art. Both had good and bad things to say about human nature. But I left Hotel Ruanda feeling sick with sadness, and it wasn’t for the reason I expected.

It was a late point in the film,  when the Hotel Ruanda was at carrying capacity with over a thousand tutsi refugees. Water and electricity had been cut off; people had to lower buckets into the chlorinated swimming pool in order to survive. Beyond the walls of their hotel were hundreds of thousands of people being hacked to death, and millions more determined to end the lives of the few that were left within. Thrilling, edge-of-your-seat moments are what this movie is made of, but this was the slow disintegration of their final line of security. An escape mission had failed, and if the murderous masses didn’t get them first, dehydration would. “In two days we’ll all be dead,” Paul said. People were giving up.

The next scene was of a hotel hallway in the middle of the night, lined with people who had nowhere else to be. Some were spread out on the floor and trying to sleep, while others sat and smoked or whispered dismally. You feel the unreality of their situation; harmless people whose lives have been paralysed. Harmless people with nothing but a hotel wall between themselves and the crowds who want to hack them into pieces with machetes for things they haven’t done.

Then one of those people filled the screen. A woman and her infant, curled up on the floor, the baby at her breast.

Ruanda breastfeeding

Hotel Ruanda (2004)

It hit me like a ton of bricks. I’m sure there are other women who know what I mean; it’s nothing that would have caught my eye so strongly before. But the situation she was in, the men with machetes who were targeting her baby, suddenly became real. I felt the most overwhelming pity, and affection, and companionship, and my daughter was fast asleep on my lap and I brought her up to my chest, feeling the urge to draw her back into me again.

The feeling stuck with me all night, like being trapped on the searing edge of tears. I couldn’t kiss my daughter enough times.

There’s only one other time I felt this way. It was back in January, in the middle of those most difficult early weeks, when I was exhausted and in a blur. A Columbian policewoman had found an abandoned newborn baby on the edge of death, and breastfed the tiny girl to save her life. The text left me neutral, but the video was different. The tiny infant was at her breast, suckling with that familiar, fragile look, and it seemed inconcievably cruel that unlike other babies, who are born and held close, she had been dumped in the woods alone. I was jolted out of my post-natal delerium and spent the next few days awake enough to shower my daughter with all the love I had.

There’s something special about breastfeeding. It is said that the strongest natural high available to human beings is the one which comes after a natural labour and delivery. I had a C-section, but I still can’t recount a more blissful and simultaneously peaceful moment than when I heard my daughter cry and laid eyes on her for the first time. Women briefly revisit that high when they breastfeed – a gentler dose of oxytocin – and while the first few weeks are gruelling, the months which extend beyond that are beautiful. I look forward to the moments, cut at intervals into each day, when we get to put everything aside and bond. Sometimes my wrist grinds out of place, and I’m reminded that breastfeeding hormones are putting my fragile joints and my precarious stability at risk. Sometimes, when she’s suckling and I’m awed by her inexplicable beauty, I remember that there will come a feed which is her very last. Both of these thoughts hit me with a gut-deep sadness unlike anything I have felt before. In all my life I had never imagined that one could feel this way.

There are innumerable differences between myself and a woman seeking refuge from the Rwandan Genocide. There are innumerable differences between myself and a woman down the street. But when I see a woman nursing her child, I feel a rush of warmth and companionship. I know that we have that one special experience, and that one special feeling, in common. It is a bridge through which empathy can travel. It has forced me to care about women the world over, in a new and visceral way.

What is achieved when such a potentially boundary-crossing ritual is forced out of the public sphere? Why must something this beautiful and primal and common among women be tainted by patriarchal politics? Where is the use in having an anti-breastfeeding movement at all?

This is still a man’s world. And in places where gender relations are coming under

tara-ruby-breastfeeding-firefighter

Photo by Tara Ruby

pressure, what better way is there to put a woman in her place than to re-inscribe her newly nurturing body as a sexual one? What better way is there, in forcing nursing women to exit the public sphere, to remind new mothers that their society was not, in fact, built for them? A firefighter in New Mexico is in trouble with his Station because of a photograph in which his wife nurses their child while wearing his uniform. A judge in North Carolina told a nursing mother that her act was ‘absolutely ridiculous’, and forced her to step outside, in spite of the fact that public breastfeeding is legal. A republican state represenative named Josh Moore had this to say about the issue: “if it’s a woman’s natural inclination to pull her nipple out… than [sic] you should have no problem with a man’s natural inclination to look at it and grab it.”

The bill Moore was defending, which attempted to illegalize the public exposure of female breasts and thus isolate breastfeeding women, is just one example of the incredible amount of energy wasted on this issue in the USA.

Breastfeeding has been found, in study after study, to provide babies with the best start in life. The WHO report on breastfeeding emphasises that it may be continued “up to two years of age and beyond.” So enjoy it. Do it as often and for as long as you want. Do it wherever you want. This is a short-lived gem of motherhood. Don’t let politics destroy it.