A Lot Like Eve

by Joanna Jepson

  “Hey! Hey! Come and see … do we look like twins? You and me?”

  I watched us in the mirror. “Do we look like twins?” I repeated, smiling.

  “Yeah, go on! Are we twins?”

  “We’re not twins, Ali … I’m nineteen and you’re seventeen!”

  “But look. Go on!”

  I looked. His eyes were alive with gleeful expectation. My eyes that had been almost permanently swollen from the daily outpouring of tears were now empty and pale, framed by dark shadows.

  “Tell me I look like you.”

  “Do you want us to look like twins, Ali?”

  “Yeah! You and me.”

  “But why, Ali? You’re my brother we already do look like each other.”

  “Noooo.” He frowned with frustration. Then he moved and kneeled up behind me in the mirror and looked at himself. Putting his dry, creased hands up to his ruddy cheeks, he pleaded with his reflection for a moment.

  “I don’t have Down syndrome face. I look like you.”

  In that late May evening sunlight Alastair’s words suddenly toppled the weight of intrusive ugly labels under which I was now collapsed, depressed and crushed. Right now I was the picture of normality that my brother wanted to reflect. Resembling me was his validation. As we knelt there by the window, squeezed between a chair and the airing-cupboard door, the world outside was all at once forgotten in that image of brother and sister before us in the mirror. There we were, for a moment, unassailable by the shallow judgements of teens who’d fed for too long on a diet of celebrities and supermodels. Whole and complete, simply occupying the features that were ours: features that contained our storylines and bore the harmonies of belonging with each other. There was nothing else in that moment with which we could have been compared and pronounced defective.

  I smiled at Alastair, yet I knew that it was the jibes and taunts of his own foes that made him insist that we could be as indistinguishable as twins. I leaned forward, looking at the architecture of my bones and teeth reflected before me. What would it be like to simply inhabit this face without letting the commentary of strangers reach beneath the layers of appearance and wring the life out of me? I looked at Alastair, noticing the facial creases and slants that were supposedly symptoms of his disability, but seemed only to form irrepressible expressions of mischief and frustration, joy and love.

  I wanted to stand between him and the world, barring access to anyone who might bring their inadequacies and, even inadvertently, dump them on him. But that would deny the world Alastair.

  Mum had said that he would make some people feel afraid. And in a strange way that was part of his gift, being able to lift the veil on people’s pomp and pretence. Because when people were busy keeping up appearances Ali wouldn’t fall for their good impressions. The workmen digging up the road in their high-vis jackets were no less exciting to talk to than the Bishop in all his robes. I guessed that Mum had been right when she told me about people’s fears, because if people were trying to hide behind their cool exterior then Alastair could be a very risky person to know.

  While the rest of us were chomping on that morsel of forbidden fruit hoping for a bellyful of satisfaction from playing God over everyone else, that bite of fruit was never properly digested by Ali. Where we might fall over ourselves trying to suck up to the eminent and successful, Alastair remained somehow blind.

  Disabled? You betcha! He was out there living his life without the same armour the rest of us fashion for ourselves. It left him naked and an easy target for those who might be shown up by his lack of pretence. It wasn’t that he denounced or mocked people’s power plays, it’s just that that wasn’t what he responded to in people. When we might notice someone else’s brilliance and translate that into a judgement about our own inadequacy, or when someone else’s badness begins to bolster a sense of superiority in our own mind, that twist didn’t take place in Alastair.

  Somehow the Fall fell differently on him.

  And so, therefore, did the Light.

  I remembered back to the evening when old friends had come to visit Mum and Dad, in shock and tearful apprehension over the news that their newborn baby girl had Down’s syndrome. I thought about how my parents had stayed up late into the evening with this shaken couple listening to their fears and trying their best to answer their questions. I remembered how Alastair, returning home from an evening out, had heard voices in the sitting room and gone in to greet the guests. And how, on spying the carrycot with sleeping newborn, he had exclaimed, “Ahhh a baby!” and shot across the room to kneel beside her and, making the sign of the cross on her forehead, had said, “God bless you in the name of the Father and of the Son and of the Holy Spirit.”

  Ali was a vision of life lived out in the light, nowhere near the cover of a fig tree. He reached for the value in people that was beyond their posturing. Like when he was given his first camera and the developed photos were sent back and we saw the people Alastair noticed and thought worth photographing, each one an important, deliberate click of space on his film …

  The postman leaning his bike against our hedge.

  The postman waving and smiling as he rode off.

  The refuse collector bow-shouldered under the weight of a bin, saluting at his photographer.

  The refuse collectors hanging off their truck waving.

  Mum, in her dressing gown, curled up in her favourite chair in the nest, before everyone else was up.

  Me, asleep.

  Rosalind, asleep.

  Edward, the cat, curled up on the end of Rosalind’s bed.

  Dad sitting up in bed with cup of tea and Bible open on his lap.

  The workmen shovelling cement in the middle of our road.

  Eric, the elderly and infirm veteran from further along the street, resting on a garden wall.

  The driver of a lorry leaning out of his cab with his thumb up.

  Butterflies mating.

  Alastair saw value that lay beyond status and appearances. But it didn’t always work the other way around, it was an unfair trade-off. And here in front of the mirror I heard him count the cost. Feeling the sadness behind his desire to look more like me I wrapped my arms around his neck and leant my head onto his shoulder. I wished we who loved Ali could have been the only voices that really mattered. To have had the power to swat and bat away all accusations of abnormality from his consciousness, to have been able to instill in him the knowledge of the complete adoration and love that he inspired in us, despite all the infuriation he could often provoke.

  I had watched Alastair go forward for healing at every healing service possible. Any time a preacher had asked from the stage where the person with a bad knee or slipped disc was, because God had told him He wanted to heal it, Ali would shoot up to the front ready to receive healing of Down’s syndrome. But God never did tell any preacher man that He was minded to set someone free from that kind of disability. Maybe Ali eventually realized, in those moments spent waiting at the foot of the pulpit, that Down’s syndrome wasn’t on God’s list of problems to be sorted. I, meanwhile, had always watched on, nervous that God might see Alastair’s faith – which was acres larger than a mustard seed – and somehow heal him. But I was always glad when He didn’t. I didn’t want Alastair to be returned to us devoid of that extra chromosome, unrecognizable and incomplete. There was no version of Alastair that wasn’t infused by Down’s syndrome, just like there was no version of him that wasn’t infused with our blend of English-Scottish-Scandinavian DNA.

  Though I would happily have seen the Down’s label scored from his medical records, I didn’t want my brother to no longer be himself. The label might have had its uses in the early days, like a metronome setting a more appropriate tempo for Mum and Dad and their expectations. But beyond that it was useless. Alastair didn’t need a diagnosis to help him index his capacities and gifts and the meaning his life would have. Down’s syndrome was a word used by doctors and social workers, or by people who felt the need to make
him feel that that was all he was. But Down’s syndrome wasn’t a definition Alastair needed; he was too busy living out the meaning of words like courage, determination, strength, enthusiasm and encouragement to be undermined by negative expectations.

  Now that I realized how the label had become a taunt to Ali’s mind I wondered about surgery once again. The accusations of being handicapped hurt him, not because it made him feel inferior, but because they made him feel he didn’t belong, as if he wasn’t really one of the rest of us. Would the loss of Alastair-ness be compensated for by him feeling ‘normal’ if, in some hypothetical Swiss medical technology laboratory, a way of removing that extra chromosome became possible? And would we let Ali make the decision to fix a problem that only existed as far as others made it a problem? Or would we realize that some things in life get broken when we try to fix them?

  Where for most of us the snares set by others snag on the fabric of our ego, for Ali they cut into him, causing him to question his place and belonging and worth. There is no surgery for that: he had to live in the struggle and costliness and richness of that reality and we had to be with him in it. Looking at Alastair there it became clear to me that we had to help him inhabit himself so rootedly that the snares and snarls of others wouldn’t pull him out of who he was. Maybe it was grace, a kind of protection, which kept Alastair, and those like him, from the bungling, mangling attempts of medical cures, and drew us to look in a different direction for wholeness?

  And what about the offer of surgery that still lay open to me? Mr Harrison had been good to his word and kept the date in his diary. There were six weeks until that date and I looked ahead towards it, for the first time in several months. Here now, away from church and sermons about Abraham it began to look different. It seemed less like a temptation put there by God for me to proudly resist, and more like a gift sitting in the open hand of a God I’d not encountered for a very long time. A God who seemed more like a mother, an older sister looking at me the way I looked at Ali. Someone understanding, and compassionate, and kind. A presence, gently beckoning me to stop trying to be so perfect and together. To see that it was OK to let the leaves of self-righteous pride fall away because He had me covered already. A presence who wasn’t planning how to smite me for taking the gift laid open to me, but who was giving me the choice and either way would find a way to make me whole, with or without the facial reconstruction.

  This was freedom. Knowing that all was not lost … that I would not be lost, whatever decision I made.

  * * *

  When Dad had brought me home from university my doctor had talked to me about the need for anti-depressants. The idea did not appeal. It seemed like denial; cheating the reality that I was hurting. So I tried hard to do better; I tried to pray the darkness away and tell my fear that it wasn’t the Truth. I carried little cards in my pocket with Bible verses written out on them by Dad.

  “For the Spirit that God has given us does not make us timid; instead, His Spirit fills us with power, love, and self-control.”1

  “Cast all your anxiety on Him because He cares for you.”2

  “The peace of God, which passes all understanding, will guard your hearts and minds in Christ Jesus.”3

  It was just like a monumental game of mind over matter that I called faith, and which was really my proud and desperate attempt to prove to God that I was deserving and good enough. I couldn’t see that this was just another variant of suppression and denial.

  But our soul knows its way home, and the truth cracks its way out between the fissures in our integrity somehow, and sooner or later it etches its insistent presence on the canvas of our bodies if it finds no other voice. Which is possibly why my throat had become such a battleground, constricting so tightly that the thought of solid food was unbearable. The relentless roiling of anxious dread in my tummy, an aching tremble in my limbs, my mind dark and hopeless: whatever Bible verses I was reciting they weren’t doing the magic trick I expected of them.

  Now, sitting in front of the doctor, explaining my reluctance to turn to pills, he told me, gently, that I was breaking under the strain. “Think of when someone breaks an arm,” he suggested, “it gets put in a cast to protect it while it heals. For you it is the same, you need something to hold your mind still while you heal and become strong again. Imagine anti-depressants as that cast.”

  I wanted to know myself as that; unbroken, strong, healed. There had been a summer, in 1992, when I had felt what that was like. Three fabulous weeks in which I headed out to Romania with 26 other teenagers to help build a church and run a children’s summer camp in the Roma community. It was the first time in my teen years that my face didn’t seem to be noticed. I was able to take an affectionate place in everyone else’s banter and to be able to return it freely, not screwed up in shy angst over the irrelevance of my affections or unsure they would be welcomed. The vivacity of our post-exam high spirits and our excitement at the Transylvanian adventure ahead of us broiled these friendships, forging them in laughter, camaraderie and deep trust, sealing them for decades to come.

  Several Etonians were on the trip, among them Bear Grylls, and, clearly happy to be free from an all-male environment for a little while, they lavished their grandiose flirtations upon the girls. “Santa Joanna!” Bear would drawl in exclamation, opening arms wide towards me, “Quien en el mundo es más maravilloso que tu?” It didn’t matter that 50 seconds later he was mooning over Santa Victoria as she walked across his path with another pile of bricks. “No one, Bear! No one in the world is quite as wonderful!” I laughed back shyly over my shoulder.

  Those weeks in Romania went way beyond just feeling included, merely on the receiving end of everyone’s graces, patronized but still not really a person in my own way. The bliss of that trip was finding I was as lively, generous-spirited and ordinary as everyone else. For those weeks, I larked, I laughed, sang children’s action songs to bewildered Romanian children and felt as if I was growing into new rooms; becoming an undiscovered version of myself.

  That freedom, that unselfconsciousness to give of oneself without fear that you’ll be rejected because your jawbone has grown a little too enthusiastically was surely the freedom that surgery would make possible. My mind skipped ahead of the doctor’s words about anti-depressants to the thought of being un-cast from negative reactions and living unfurled from that small, tight place. It wasn’t that the surgery was going to change who I was, it would just give a chance for me to come out of hiding. That was what I wanted.

  Notes

  1 2 Timothy 1.7

  2 1 Peter 5.7

  3 Philippians 4.7

  14

  About Face

  Six weeks later I stood in front of the mirror in the hospital bathroom trying to fix the image before me in my mind, so that in years to come I would be able to remember what it was like to be here on this side of the knife, in this face.

  Eleven hours later I was tucked up in morphined oblivion on the intensive care unit (ICU) I’d been to visit the day before. During my stay here I saw little but heard everything I needed to know: the arrival of my Mum and Rosalind, the scrape of their plastic chairs as they sat down by my bed, the scrape of one chair and the footsteps of one of them leaving.

  Then the nurse’s kind voice, “Would you like me to see if she’s OK?”

  She wasn’t talking about me.

  It was Rosalind who had left, unable to stomach the sight of me; ventilator in mouth, garish bruising across a swollen face that now, finally, deserved the nickname “Chipmunk”, and two tubes sewn into my neck, draining blood into two bottles either side of me.

  “Perhaps if you could … I think it’s just shocked her a bit”, Mum replied.

  From the darkness I tried to heave my eyes open.

  I saw the edge of the tape holding my nasal feeding tube in place and beyond it my Mum’s arms and hands reaching across the sheets to hold my hand. Then sleep overcame me once more.

  Into the disorienting tu
mble of delirium I plunged. Pumped with enough anaesthetic to last eleven hours, swiftly followed by morphine and antibiotics, despite repeated attempts to bring me round I only wanted to surrender to sleep. Mum and Dad called my name, holding up a Get Well card in front of my face, and I tried to follow the words but couldn’t hold my eyes open long enough to catch who it was from.

  Eventually, it was decided to let the pain wake me up and I was moved out of the ICU and into a side room on the ward. One by one the tubes were removed from my wrists, nose and arms, but I held onto my self-medicating morphine button, and the two bottles of blood remained on either side, my steady companions safely catching the blood away from my throat.

  Shakily I tried to stand up for the first time, my legs trembling with doubt that my muscles would uphold me. My stomach was now concave, the loss of weight had become dangerous and my brand new hospital pyjamas hung from my bony hips. Despite the constant instruction to drink, the challenge was more bother than it was worth; my lips were swollen open and it required too much effort to keep the water from spilling back down my chin, and so I avoided the indignity of it. Mr Harrison didn’t care for my laissez-faire attitude and we had our first altercation. Though I vigorously shook my head at him when he threatened to put the nasal gastric tube back down I knew that ultimately he would win the battle. And so each sip, each cup, each pint of water became my daily goal.

  Then there were mirrors; the undeniable proof that what felt so alien about my own face indeed was. For a while I tried to avoid them, not wanting to see what this swollen facial bulk actually looked like. The emergence of my features was a long way down the road. Mr Harrison had told me that I would need another operation to build my chin and that it would be a year before the swelling would go down fully and my facial tissues and muscles would settle into their new shape. For now the days were for waiting and learning to sip water, prune juice or whatever else Mum and Dad could liquidize.

  In those mute weeks I carried a clipboard around to make myself understood and, inhabiting a quiet place in the social whirl of visitors coming and going during the long, hot summer, I watched and listened in. Life lay ahead with a new kind of unpredictability. Who could tell if it was nursing that I wasn’t suited to or whether it was just the fall-out from the bullying. I wasn’t sure that I wanted to start again and find out. But sooner or later I would have to discover what life was going to be like now. What ground would it be built upon? Would this new, squarer jaw really be the foundation of a different existence? In moments of impatience I wanted to know what life now held for me. I wanted to know what I was going to look like. The only response was the reflection of a chubby, shortened face in the mirror with Hannibal Lecter-style caging across my teeth. Whatever life was going to be, I couldn’t seize it yet. But the waiting left me with the question: who might I become once I had choices, once I began living in the spaciousness of a different life?