Short Story: On the Edge

The pale pink light gave the room a heavenly glow. Siobhan lay in silence, watching the cavity of her chest rise, then fall, then rise again. The dripping noise from outside her window had stopped; the rain must have finally subsided. It had kept her awake most of the night, which meant that she was not jolted from the security of darkness to give Aoife her night feed. Michael was supposed to be on duty tonight, but Siobhan had supposed that there was no point in waking him up. He’d have only been cranky, and God knows there’d been enough bloody rows between them in the last few weeks to last a lifetime.

‘You’re crazy, woman,’ he’d said to her at the peak of yet another row where she had threatened to leave for good. She’d even had her cabin-sized wheelie packed beside her, although she wasn’t sure what she had put into it. The decision to leave had been, as in times previous, a spur of the moment one, made because she couldn’t bear those nasty voices in her head. This time had been different, however. She had really hurt him.

‘If you hadn’t wanted your precious baby so much, I’d still be normal and not a bloody psycho,’ she’d screamed at him as she walked away, the sound of her own sobs failing to drown out Aoife’s.

She’d come back of course, hours later, and she knew Michael was relieved, even if he didn’t want to show it. They should’ve tried to talk it out there and then, but they were both tired from the fight. The constant fighting. Fighting to make it through the days, the hours. This had been exactly three weeks before, and now the pair of them were walking on eggshells. It infuriated her how he always tried to say the right thing, always tried to give her space. If he could find it in himself to be as much of a cunt as she had been, then she wouldn’t need to carry so much guilt.

A crappy mother, a crappy wife, thought Siobhan as she peeled off the bedclothes and slid into the tracksuit bottoms that she’d strewn on her bedside locker just a few hours before. She picked up one of Michael’s hoodies from the shelf, not because of sentimentality but because the excess material hid her grotesque frame, the extra pouch that now hung around her waist, like an internal bum-bag. She inhaled as she peered into the cot at her sleeping daughter, longing to feel that special connection. Aoife’s thick lips smiled, something which Kathleen, Siobhan’s mother-in-law had insisted was just wind. Well of course it was just wind, Siobhan had thought. It seemed that Aoife was willing to settle in anyone’s arms but in the arms of her mother. Siobhan didn’t know how she felt towards Aoife, but it wasn’t love. It wasn’t hate, either. It was nothing.

What sort of mother feels nothing towards their own baby? A baby that she had yearned for since she was given her first baby doll by Santa at the age of just five years old? Three years of expensive and gruelling IVF had given Siobhan a daughter more beautiful than she could have ever imagined, and yet at that moment, Siobhan didn’t feel that she was cut out for years of self-sacrifice, of putting somebody else first.

Trying to stop herself sniffling in the dark, Siobhan padded towards the door, watching the sleepy scene. It was almost romantic, like a Cow & Gate ad. A gentle inner voice tried to persuade her to take back off her clothes, to lie down and try to sleep, but Siobhan thought it was too late now. She crept into the kitchen and rummaged through the medicine box, pocketing every painkiller she could find.

Soon this pain would be over.

Soon she would be over.

Despite the high winds earlier in the night, Siobhan hadn’t expected to be peppered with cold, misty rain when she opened the front door. She smiled to herself as she momentarily considered bringing an umbrella. Ha! She thought. People who are dead inside have little call for umbrellas.

She walked over the Whitehall bridge. The road was gleaming black from all the rain, and the usually busy Daingean Road was quiet. She had it planned: she would walk a few miles down the canal, then she would take all the pills until she felt a little delirious. At that moment she would succumb eternally to the murkiness, allowing herself to sink to the bottom. She supposed that people might be sad for a few days – her sister Aine would take it particularly hard – but in that moment she was grateful that her parents were no longer alive to feel the pain. She wished that she was more religious, that she believed that she would be reunited with her mam, whose voice she yearned to hear with every fibre of her being. But she wasn’t.

The wind was gathering pace again, a perfect time to venture nearer the edge. This way, she wouldn’t have to jump. She might have been just out for a midnight stroll when she was blown in. Nobody would have to know. She was just about to step closer to the edge when a gravelly voice behind her startled her:

‘Wild night to be out for a stroll.’

At first, Siobhan thought she was hearing things, because surely nobody in their right minds (she didn’t fall under that definition, she supposed) would be out at this hour? When she turned around, the sight of a shadow startled her. Despite the wind, she could detect the metallic smell of vodka from his breath. Yet this person was not staggering: he was trudging along slowly, as if carrying a great weight on his shoulders. She felt the hairs rise on the back of her neck, ready to go on the defensive.

‘Mind your own business,’ she said at last. Couldn’t he see that she wanted to be left alone? It occurred to her that he could be dangerous, maybe capable of rape or murder. But then again, wasn’t everyone? ‘I don’t have any money. Leave me alone.’

She half-jogged further up the canal path. It never occurred to her to walk back towards home, where there would be somebody waiting to protect her. What she did realise, however, is that she didn’t feel that she was worth protecting. She also noted that while she wanted to disappear, dissolve into the earth as though she never existed, she needed to have control over how it happened. God knows, she thought, it’s the only thing I seem to have any control over at the moment.

Her footsteps slowed, and when she was outside her own head she heard the hesitant footsteps behind her. The aroma of cigarette smoke was infused in the sharp October breeze. She sat down on the hill outside the old Daly farmhouse, inwardly cursing herself for doing so as the wetness crept in, leaving her derriere saturated. The violent wind had subsided; all she was left with was silence and self-disgust.

After a few moments, her companion crouched down beside her. He smelt of sweat, of old urine, of hopelessness. Bloody typical, she thought. Trust me to meet a drunk. Her partner inhaled, which started a violent coughing fit.

‘You ok?’ she asked, forgetting herself.

The man nodded. ‘Be grand in a minute,’ he said, wiping the tears from his eyes. ‘I’m well used to it by now.’ He reached into his jacket pocket and pulled out a long can.

‘You should quit the fags,’ Siobhan said, immediately hating herself for her own self-righteousness. Who was she to talk when she had the entire contents of her medicine box in her pocket, ready to take in one go?

‘I probably should do a lot of things,’ he answered her, his voice quiet. Siobhan heard the snapping of the can, and her stomach turned at the smell of fresh beer, presumably cheap. ‘You shouldn’t be out here so late. These parts can be dangerous for the likes of you.’ The beer trickled down his throat. He wiped his mouth with the back of his hand.

‘What do you mean, ‘the likes of me’?’

He waved his hand, fanning her words away. ‘You know exactly what I mean.’ He rummaged in his pocket. ‘Smoke?’

‘No.’ Her voice was firm. ‘I don’t smoke.’

‘Ha. It must be hard to be so bloody perfect.’

Siobhan was relieved to smell the smoke; sitting so close to him, her bloodhound-like sense of smell detected urine and old underarm sweat, with the slightest hint of shit. She yearned to escape, to be at one with the swirling brown water in front of her. She took a deep breath, then another. Already she felt like she was suffocating. It wasn’t the feeling of comfort that she had been looking for.

‘Perfect. Ha! If only.’ For the first time since they met, Siobhan considered how she must appear in her companion’s eyes: a silly little damsel in distress, a privileged housewife who couldn’t possibly know what real hardship felt like. ‘You don’t know anything about me.’ She stood up, putting her hand in her pocket, feeling safer as she held the pills in her hand. As long as she had a plan, however warped that plan might be, she felt grounded. More grounded than she had felt in a long time.

Her stomach turned to bile as she thought about events earlier that day. It had started as an average day, or at least what she now considered to be average. She found it difficult to believe that just a matter of months before she was the manager of the Tullamore branch of the Bank of Ireland, bringing in quite a generous pay cheque. They’d squirrelled most of it away, of course, being sensible and thrifty. Aoife had been a surprise, a most welcome surprise. Her mere existence was testament to the fact that even the most highly paid and expensive doctors can get things wrong sometimes.

Aoife had awoken at six that morning, demanding her morning feed. Siobhan should have been well-rested; Aoife had slept since half nine the night before. Instead Siobhan had laid awake all night, unable to turn off her brain which was thinking at breakneck speed. What if she had dropped Aoife when she nearly tripped over that loose tile in the bathroom earlier? Aoife’d had a tiny bit of red in her spit-up earlier which Siobhan had assumed was from the strawberry she’d eaten earlier that day, but now she was worried that it was blood. She should’ve checked, and she didn’t. What sort of mother would allow her own child to bleed to death?

Siobhan couldn’t live with the constant inner panic anymore. It didn’t take a genius to work out that Aoife would be better off being looked after by someone more experienced, someone who would appreciate her for who she was. She warmed inside as she thought of Aoife’s blonde eyelashes, the tiny half-moons of her fingernails, the dimples that appeared when she smiled. Aoife was perfect. She deserved better than the fighting, than a mother who didn’t know what she was doing.

Another hacking cough disturbed Siobhan from her daydreaming. She stood up, and adjusted her jacket.

‘Anyway, it was nice to meet you. I really must…’

‘It was this very spot,’ the man said to her, gesturing towards the canal. ‘Where they found her. You know, I come here every night, try to work out why… She didn’t even leave a note.’ He wiped his chin on the sleeve of his jacket. ‘They say she killed herself, but I reckon that’s bullshit. She had three kids… she was happy.’ He lit a cigarette, the blue threaded smoke lingering in the calmness; the wind had passed, as Siobhan had known it would. ‘I’d only seen her the night before. She was smiling, laughing, dolled up to the nines…’

‘Who was?’ She only asked because she assumed it rude not to.

‘Karen. Oh, Karen. Now I’ve made a lot of mistakes – I’m sure that’s obvious – but she definitely wasn’t one of them.’ He pulled hard on the cigarette, as if he was seeking comfort. ‘She had it all, believe it or not – looks, brains – her mother’s doing of course.’ He crushed the empty can into the palm of his hand. ‘You hear stories, don’t you? Tell-tale signs, people losing interest in their lives -goodbye notes – we got none of that. No explanation.’

‘I’m so sorry.’ She didn’t know what else to say.

He shrugged. ‘They say men don’t talk. I don’t talk about Karen. I don’t know… maybe I’m hurt, ashamed… She could’ve fucking said something.’ The trees rustled gently in the breeze. ‘In the beginning, it was so simple. She’d been selfish, a coward – I thought maybe it’d been some silly woman hormonal thing, but they have pills for that now, don’t they?’

Siobhan scoffed. ‘You men are all the same. You think that solutions are so simple. And that we’re hysterical little women who know nothing about hardship. You have no idea what it’s like to have no control over your emotions, having to act all normal when your head is completely frazzled.’ Her voice started to break as she thought of her daughter at home. ‘How it feels to be completely useless and to have someone depend on you…’ Her chest shook with hacking sobs; she could barely catch her breath. The man looked up at her, nodding his head.

‘There,’ he said. ‘It’s out there. You’ve said it. So you’re a crap mum.’ His candidacy surprised her. ‘I suppose you beat her black and blue when she cries…’

‘Well, of course not…’ She was taken aback.

‘Or spend your money on high heels instead of baby formula.’

Siobhan’s fists clenched. ‘How dare you…’

‘Or head off for evenings out and leave bubs home alone. Leave a bottle in the cot, be grand.’

She laughed at the absurdity of the last one. She knew he was joking now.

‘You’d be surprised,’ he shrugged. ‘I’ve seen it. But Karen wasn’t like that, and neither are you.’ He stood up, wiping his hands on his thighs. ‘Go home. Get a nice hot bath.’ Siobhan screeched as he slid his hand into her oversized jacket pocket, taking out the pills and throwing them into the canal. ‘Things will be better in the morning. You’ll see.’

‘How did you know?’

‘Woman, you’ve been rooting in your pocket all fecking night.  This isn’t my first time to do this, you know. After Karen, I swore never again. Not on my watch, anyway. If you wanted to kill yourself, you would’ve done it by now. We’ve been here all night.’ He nodded at the orange rising sun and grinned. ‘For all you knew, I could’ve helped you. Murdered you. Look at the state of me. Wouldn’t blame you for making that assumption.’

‘I guess we can never know what’s going on in other people’s lives.’

‘Nope.’ He started to walk away. ‘Unless we choose to tell people. How can people save us if they don’t know that we’re drowning?’

She watched him walk away, and how he walked with a sense of purpose. She supposed he had nowhere to go. But, she realised, he had done an important thing that night – he had saved her life. She was still shaking when she got to the front door. A white-faced Michael greeted her, his face filling with relief as he beheld hers.

‘Thank God,’ he said as she broke down, wrapping his protective arms around her. ‘I was so worried, I thought you might’ve done something stupid…’ Both their faces were awash with tears. ‘I’m so sorry… I’m so glad you’re okay.’ He squeezed her closer to him.

And then Siobhan whispered the words she had always found so hard to say:

‘Michael, I’m not okay. I think I need help.’

He nodded, and finally Siobhan felt the weightlessness she had been craving.

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Something Deep Inside

Three years later, I still can’t make up my mind what I want. I really thought that what I wanted was to be a full-time freelance writer, with nothing else to bother me during working hours – just me and my desk. I tell people I am writing a novel, or at least, trying to. So why have I just committed to spending the rest of this year, and some of next year doing Disability Studies in Maynooth? Don’t get me wrong – I have no regrets. It looks like an interesting course and it’ll be handy to have if I ever do decide to go back into employment in the disability sector.

I’ve had a really productive summer (evidently not blogging-wise but you can’t have it all). In February I was co-opted onto the Board of the National CIL which was a huge honour, and I’ve been involved in some interesting and thought-provoking projects. Most recently I attended an Independent Living workshop in Offaly which was facilitated by a fellow activist. The aim of the workshop was to get back to the roots of Independent Living and to reinforce the idea that as disabled people, we are the experts in our own needs. It was a great session.

One of the questions the facilitator asked us was ‘What are the barriers to Independent Living?’ Loads of great answers were given: lack of Personal Assistance, lack of accessible housing and transport. But I, ever awkward and different, gave the answer of ‘internalised oppression’, you know, just for the craic. The facilitator smiled.

‘Big words,’ she said. ‘Would you like to explain what that means?’

‘Sure.’ My hands were sticky with sweat. ‘Internalised oppression is when you come to believe all the negative labels given to you from outside sources.  It’s when you have been told and reminded of your limitations so much that you begin to believe them. As time goes on, you start to place limitations on yourself to the  extent where you hold yourself back from achieving what you are truly capable of.’

I have been involved one way or another in disability activism for the last fourteen years. I have seen people fighting for housing and personal assistance and accessible transport. Any progress in disability rights that was made prior to the recession has essentially been wiped out. (You are free to argue this point; I love nothing more than a good old-fashioned debate). Look, it took Ireland twelve years to ratify the United Nations Conventions for the Rights of People of Disabilities. Yet there is a long way to go before access to Personal Assistance or accessible housing will be recognised as basic rights. We are in the throes of the worst housing crisis this country has ever seen. Many families are living in abject poverty; it was just reported this week that current childcare costs can average twenty percent of household income. As always, the supports needed by disabled people to live independently are considered a luxury.

Is it selfish, given the current economic climate, for disabled people (aka people disabled by our society) to be demanding more? I’m sorry, but I don’t think so. In fact, I think disabled  people have been very accommodating over the last few years. There was barely a whimper when the charges for medical card prescriptions were introduced. The Mobility Allowance disappeared almost without warning, with nothing to replace it. in fact the only time disabled people caused a fuss in Ireland was when James Reilly callously threatened to retract a massive amount of funding from the Personal Assistant Service in 2012. Activists slept outside the Dail in the freezing cold for two nights in protest, and subsequently the cuts were reversed, a momentous occasion in Ireland’s disability history.

And as I watched the entire rotten saga unfold from the comfort of my armchair at home, I felt inspired. Not in a sort of ‘aren’t these cripples so brave’ kind of way, but it was the first time I realised that I had been so blind. It was 2012 and my little girl wasn’t even a year old yet. I had spent the whole year fighting my own battle, trying to prove to so-called health professionals that I was not a danger to my own baby. A year where I demonstrated with grit that I was more than physically capable of raising a child to the many onlookers around me, but then spent my nights lying awake, wrestling with fear and self-doubt, allowing my own tears to sting my face. Would I be physically able to raise a toddler? Would some well-meaning person report me for being a bad parent if I made a mistake? If I was struggling and had to ask for help for whatever reason (not necessarily disability related), would my child be removed from me? And yet, there was hope. People out there were protesting, demanding to be seen as equal. Demanding respect, demanding their rights.

And it was then that I realised that I was my own worst enemy. I was succumbing to fear rather than standing up and questioning the way I was treated and perceived. It took a long time for me to believe that I was a ‘proper’  and capable mother because parenthood isn’t perceived to be the norm for disabled people in Ireland. There’s horror stories and rumours everywhere. Most damaging in my case was that little internalised voice that led me to believe I was incapable.

My friends, I would put it to you that this little voice is the single biggest obstacle to true equality in Ireland. This is the voice that tells us that we are less than, the voice that  advises us not to voice how we feel ‘because no-one likes an angry crip,’ the voice that tells us that if we try harder to conform that one day we might be accepted as equals.

And this is the obstacle to true equality that I predict will be the hardest to remove. Why? Because whether your impairment is congenital or acquired, social conditioning dictates that *you* are different, that *you* must do your best to fit in.

I don’t know for sure at the time of writing this blog whether I want to work in writing or disability, or if (ideally) I get to do both.

What I do know is: Internalised oppression, I see you. I am naming you. And until my dying breath, I will strive (hopefully with others) to always challenge you.

Rebel Girls

My six year old daughter, like most children, likes a bedtime story before she goes to sleep. Her latest favourite book is Goodnight Stories for Rebel Girls, a collection of stories about famous women who broke the mould in some way. There’s over a hundred of them: Coco Chanel, Jane Austen, Amelia Earhart to name a few. However, no matter what ones we read, she always insists on reading the story about Rosa Parks. It’s the story of a woman of colour who refused to give up her seat on the bus for a white person. Eventually, thanks to Rosa Parks, apartheid soon became illegal.

‘Why did black people and white people not sit together?’ my daughter asked, confused. There’s a healthy mixture of nationalities in her class, and my heart sunk at the idea that she would, unintentionally, start to label them as different.

‘Because people are mean,’ I replied. ‘Sometimes people make up stupid rules to suit themselves and hurt others, for no reason. It’s a bit like bullying.’

‘People are mean to you too, sometimes,’ she observed. ‘They laugh at you, call you names. But you never get hurt, and you never give out to them or get angry about it. If I were you, I would.’

I looked into her round blue eyes and smiled by way of reply. Plenty of time when she’s older, I thought, to sit her down and explain everything. How I grew up in a mainstream environment where I spent too much time trying to fit in. How I fought to prove myself as a person of worth, in school, in college and at work. How hard I’d fought to prove myself as a worthy mother, not only to professionals, but to Ali and even to myself.

Tomorrow, the 8th March marks International Women’s Day, a day to acknowledge and address both the real challenges facing modern women and the fantastic achievements that women have made throughout history.

But today, 7th March 2018, marks an equally significant milestone: a solid commitment from our government to ratify the United Nations Convention on the Rights of People with Disabilities (aka the UNCRPD). The disabled population of Ireland has been waiting for this for nearly twelve years. And it seems inappropriate of me to admit that after all this time, after blogging about it so much, I don’t feel that lightness, that relief that I thought I would.

Oh, it’s a victory for sure – we have won a battle, all right – a battle we should never had to fight in the first place. The onset of the recession brought waves of devastation to the disability sector, and the aftershocks are still in evidence today. The disability budget was stripped down to the minimum, and many disabled people lived basic lives. Unable to afford their own accommodation or to get a job, many were forced to live with their families or in segregated/institutionalised settings. Fear soon consumed us, and many of us were left afraid to complain lest whatever we had left was taken away from us too.

I have spent my adult life hearing stories about wheelchair users being trapped on trains, about disabled parents living in fear of their kids being taken (and sadly I’ve also heard stories of people who’d love to become parents but don’t have the energy to fight the system/jump through hoops as we did), about people going for countless job interviews and never getting a job.  And as much as I’d love to think it would, ratifying the UNCRPD isn’t going to mean anything unless we truly believe  that we are equal and that we are willing to start a new narrative.

Tomorrow, on the 8th March, International Women’s Day, I will be thinking of all the wonderful rebel women I know, especially those with disabilities. The ones who fought to be educated. The ones who decided that they didn’t want to spend the rest of their lives in the back room of their parents’ houses. The ones who had lots of sex and had babies. The ones who continue chipping away at the inequality they face, both as women and disabled people. I’ll be thinking of my mother, who didn’t believe in mollycoddling me, who taught me how to be self-sufficient. I’ll be thinking of my daughter, the future generation, who I know will take it upon herself to make the world a better place for the rebel girls of the future.

And tomorrow, I’ll continue to lead by example, as best I can.

 

A Future Within Us

I lay on the hard, unmade bed that I hadn’t really been able to sleep in the night before, and closed my eyes, trying to drown out the medley of Dublin city traffic below me: the deep hum of the Dublin buses, the screeching of random sirens, the faint echo of heavy footfall. Noises that were once so familiar to me ten years ago, as I lay on my overly-narrow single bed in Botany Bay in Trinity College. It should’ve felt like home, and yet, never have I felt so out of place.

I shouldn’t have been lying in bed at half three in the afternoon on such a momentous day as the 23rd September, 2017, a day that I worked so hard towards for the guts of a year. I had left my colleagues behind in the  Mansion House to celebrate the lives of those who had established the Independent Living Movement. An event that I had put everything I had into, turning down paying jobs and little tidbits of work during the summer in the process. I wanted to give all my energy to this event.

Two hours beforehand, I’d tackled one of the things on my bucket list: I performed a piece of drama that I’d co-written in front of two hundred people. As I climbed the stage, I thought I could feel a brick beneath my posterior, I was so nervous. I felt overwhelmed with emotion as I played ‘Rachel’ out on stage, a disabled mother struggling to escape the negative labels placed upon her by an indifferent society. The only way I can describe the experience is ’emotional nakedness’. The tears – and the anger – were evidently mine, not Rachel’s. I couldn’t have dreamed of the positive feedback, and yet afterwards, I wasn’t elated – I was physically sick.

Afterwards, I told myself that it was stress. I panicked because I was filled with fear that I’d pushed it a little too far this time, that once again I had seriously overestimated my physical stamina and taken on too much. But it wasn’t that at all. And it’s only this morning when I feel semi-normal again that I realise when I’ve felt that particular sensation before – the feeling of darkness, heaviness in the pit of my stomach – and it was when my mother died.

Or more specifically, the moment of realisation that she wouldn’t be around for me any more and, as a fully-fledged adult (I was twenty-five when she died) I would now have to shoulder a lot more responsibility for my own life.

It’s easier to be a sheep than a shepherd, easier to follow than to lead. Many of us have followed for years. When Martin Naughton died last year, it felt like the bedrock of the disability activism world was slowly starting to wear away. You could always count on the seven activists that ‘By Us With Us’ honoured on Saturday to lead the way. to spearhead the protests, the fight. Who can we look up to now?

And then it occurred to me that although an intimate knowledge of past successes in disability activism are crucial, we need to trust ourselves and have real belief in our own ability to pave the way to the future. By the way, this nugget of wisdom is coming from someone who has absolutely zero self-confidence and who is still learning to assert her right to use her own voice, the result of years of internalised oppression and being underestimated by those around her.

It’s taken me three days to recover from the emotional rollercoaster that was Saturday (even though I missed most of it) and to get my head around the fact that although the pressure is off in many ways, there is still lots of work waiting in the future. And we – not anyone else – will have to be the ones to put ourselves forward. One of the things that I did manage to gather on Saturday is that there is a general consensus that society is now going backwards, and that the ratification of the United Nations Convention on the Rights of People With Disabilities will not guarantee us our liberties.

That  will depend on us. On every single one of us.

School lessons

So, Alison is back to school on Wednesday. I know not every parent will agree with me but I for one cannot work out where that summer went.

Kids have a tendency to surprise you, though. Just this morning Alison had expressed trepidation about going into Senior Infants. ‘The work will be too hard,’ she moaned at me while I scoffed at her. Ten minutes later she had orally completed the first twelve pages of her new Phonics workbook. With Alison, I’d be more concerned about her getting bored than struggling. If she were to get bored, she’d lose interest and thus would begin the descent of a slippery slope into delinquency and mischievousness.

I suppose I’m still aghast at how much she’s learned in the last year.  Her reading skills are better than mine were at her age (it pains me to admit this), and she spent the summer doing Tullamore library’s Summer Reading Challenge. (This is where kids are challenged to read ten books over the summer. She read forty, easily). She’s retained most of her Irish and has been randomly coming out with statements such as ‘Six plus five is eleven’.

So she’s doing well which is a relief, because I had concerns about her starting at just four and a half. But of course academia, mathematical prowess and literary genius is not the be-all-and-end all either.

As the daughter of a wobbly mummy, Alison has learned that it’s good to ask questions about disability, and boy does she!! ‘How come you could walk before without a walker, but not now?’ ‘Why do you use  a wheelchair when you can walk?’ ‘How come these footpaths are not ramped? That’s very dangerous.’ I’m raising a mini activist. Together we are becoming a force to be reckoned with.

In addition, Alison has learned to deal with having a sort of celebrity mummy. If she thinks people are asking too many questions, she’ll change the subject with a kind of ‘who cares about that auld has-been in the wheelchair’ attitude. It’s so normal to her that she can’t work out what all the fuss is about. I used to worry that my disability would drive away some of her friends, but actually I’ve established a rapport with them all and subsequently lost my wondrous tinge.

I’d also consider her to be kind. I’ve tried to teach her empathy, sort of ‘how would you feel if’ scenarios. She can identify if people are being unkind to each other and she tries to include people. Sure, she’s not perfect, and if she’s part of a clique she’ll get caught up in it. But she also knows when she’s in the wrong – she’ll look at me with her big blue eyes that say, ‘sorry mum, please don’t give out, I love you!’

And what have I learned? I’ve learned that there’s more to being a mum than the ability to run around after your child. I’ve learned that I am in fact not an alien and am just the same as other mums. This year, I’ve made the nicest mum friends whom I love chatting to and I no longer have any qualms about asking them to help me out with lifts to birthday parties. I’ve learned how to let go and share my hilarious parenting fails with them instead of constantly being worried that they will judge me as a parent or report me to social services!

I’ve learned to enjoy motherhood – I mean, really enjoy it. I’ve learned to love myself, and take care of myself. Whereas before I felt like a fraud, I now know that Alison and I mean the world to each other.

And isn’t that the most important lesson of all?

 

 

Flying Low

Readers, this summer my husband, the little ‘in and I decided to ‘staycate’ in Ireland. We spent a lovely week in Galway and then the two of us went north for a wedding towards the end of July. It’s been a nice summer, but now my husband wants to go abroad later in the year. And while I’d love to, part of me couldn’t be bothered with the rigmarole. Believe it or not, it has nothing to do with flying with our  five year old daughter – she’s more sensible than the two of us combined – but rather the worry about bringing the wheelchair with us.

Don’t bring the wheelchair, we’ve been told before. Rent one instead. Well that’s all well and good, but the truth is I like my wheelchair. I’m used to it, I personally don’t think it’s overly bulky or heavy (125kg),and it means in the airport I can take my time, if I check in early. Admittedly, however, I’ve only brought it once, when we went to Salou in 2015.

This was with Ryanair.

I am not exaggerating when I say I rang their customer service a thousand times to give the specifications of the wheelchair – the weight, make, dimensions and the fact that it had a dry-cell battery. Oh, and the fact that the back folded down. And it was, after all the phone-calls and emails, a hassle-free experience.

I have an Invacare Kite. The same wheelchair as my friend Dani McGovern.

Dani was in my house last Wednesday. She’d called over with her husband John and son Logan and we chatted about how excited she was about little Logan’s first time on the plane (they were going to Birmingham for the weekend with her sister, her brother and their kids). They’d only been away as a couple in Lanzarote  a few months before so they had no reason to believe there’d be any issues this time either.

But when I read Dani’s sister Sharon’s Facebook status yesterday afternoon, I immediately felt sick. The story, which Dani shared with the Irish Independent today, was that there was no issue with Dani’s flight over to Manchester, but on the way home she was asked for the voltage of her battery which she was unsure of (Neither of us have been asked this before. You’re normally asked if it’s a dry or wet cell battery. Wet cell = no flysies. Ours is dry cell). She was given the option of flying without the wheelchair (Dani can’t walk, unless she’s harbouring a secret I don’t know about) or getting off the plane.

Can you imagine being told that your legs were going to be amputated or somehow decommissioned? I’m talking shite now, aren’t I? That’s how much sense flying without Dani’s wheelchair made. So really she had no option but to disembark the flight, leaving her husband and her young son (who, like any two year old, went beserk without his mammy in his eyeline) and wait for the next flight, an hour later, where by some miraculous intervention her chair suddenly wasn’t a ticking time bomb and she could fly! Makes sense, doesn’t it? (Just like my handwriting).

What wasn’t detailed in the article was that this isn’t the first time Dani’s been messed around when flying. We went to Mallorca in 2007, Dani, John Paul and I, and we’d brought Dani’s manual chair for me because taxis over there don’t take electric wheelchairs of the size Dani’s was at the time so we thought we’d have her small one for taxis (and for me if I got tired). Good thing too, because when we landed, the cabin crew arrived with the manual chair but there was no sign of the electric one! Panic is not the word, lads – it was like we’d lost a limb. Eventually it reappeared on the carousel – how it got there I haven’t a clue. In the meantime. our accessible taxi had threatened to leave without Dani, in a foreign country where we knew no-one.

Dani never went to the media about that, and she was within her right to. But if she had not gone this time around she would’ve inadvertently been saying that this treatment is ok, that it was somehow her fault. But it isn’t, and was not.

In short. Dani is more than ‘a girl in a wheelchair’. She’s a college graduate, a woman who’s been living independently since she was nineteen, a woman who’s worked hard to prove herself in every way, and in spite of some negative running commentary is a fantastic wife, loving mother, loyal friend and passionate advocate. She certainly didn’t deserve that treatment.

And in telling her story, she is reminding us that none of us do.

Unproductive Days

Lads, for the last half an hour I’ve been sitting looking blankly into the laptop screen silently willing the urge to write to wash over me. And these are the first few words that I’ve managed. So, instead of marking today down as an unproductive one, I’ve decided to be sneaky and write this blog and mark it as work. Genius or what?

I ‘came into work’ at 9.30pm this evening with the intention of researching an article. That hasn’t happened so I’ll have to do it tomorrow.

When I started writing a novel two years ago, I told myself I’d be finished the first draft within six months. Ha. Hahahahaha. I should’ve been a comedian! New aim is to have it done by this Christmas. Oh, and possibly a play too. And a few more newspaper/magazine articles. And play a part in a major event organised by disability activist group, By Us With Us in September.

What do you mean, these are totally ridiculous, unattainable goals? Well, I’ll show you…

I didn’t manage to write much today. But I did manage to bath my child, bring her to the hairdressers and to a birthday party, complete with card and present.

No, I’ve written sod all. But I did manage to clean and hoover the house.

It’s hard to explain, but when I don’t manage to write, I don’t feel like myself. In fact, I’m grumpier, harder to live with, and sometimes this borders on self-hatred. When I see everything I expect myself to do written down on paper/on the screen I can see how ridiculous it is.

I’ve been pushing myself a little harder lately, conscious that the summer holidays will eat into my writing time. I know I won’t be blogging as much, and that my working week will be at least halved.  I might get one or two days a week to work, and the rest of my time will be my daughter’s. And rightly so.

If you had told me ten years ago when I started and abandoned the novel I’m working on now that I’d be a writer with a handsome husband who supported me and a beautiful daughter who loved to read, I would’ve called you mad.

If you have told me that I’d be totally obsessed with the Independent Living Movement, I would’ve scoffed. I hate committees and commitment and yet both seem to be dominating my life at the moment.

I’m coming up to the third anniversary of the July night that I was determined to end everything, once and for all. If you had told me then that I would come out the other end and start to recover, even like myself a little, I wouldn’t have believed you.

And I think of that Sarah back in 2014, who was struggling to stay together for five minutes at a time, and how thrilled she’d be to have a novel on the go, some freelance work, a little blog and a real opportunity to help people. And not in an arrogant way, I think of how far I’ve come from three years ago, just by taking one day at a time.

Suddenly, not being able to focus and write a few words doesn’t seem like a big deal, because I know there’s  always tomorrow.

And it’s great to be able to believe that.

Delicate Scent of Summer Dusk

I really shouldn’t be blogging tonight. I’m lucky enough to have a bit of work to do, work that I might actually get paid for. But I can’t concentrate.

I don’t know whether it’s because I’m ‘overdoing it’ as my two friends and husband protest that I am, or whether it’s this lovely weather distracting me and giving me an intense dislike for my desk at the moment. It’s been gorgeous these last few days, and my mantra is to make the most of life before it disappears through your fingers as fast as dry grains of sand. So I’ve been in the park, going for walks and trying to clear my head. And then I sit at my desk, and nothing happens.

Just half an hour ago, I took a break from my desk to bring out the bins, and as I stood there absorbing the fresh air and fanning away the midges, the smell of the warm air brought back memories: memories of having barbecues growing up that lasted until it got dark; memories of walking to the shop with a single pound coin in my pocket to buy sweets for all four of us; memories of having cycling competitions with my two younger sisters (in my younger, fitter days) around our estate, only coming back in when the other kids were called home too.

I really hope that one day, Ali will enjoy this freedom, but right now I don’t think she’ll ever be as free as we were. The dangers that were there when we were kids are still there now, and coupled with social media (I get the irony, believe me), you really can’t tell who is watching your kids and what images they have of them. Ali is only five and I’ve already taught her my address and phone number in case we ever get separated for whatever reason. We’ve done stranger danger, although how much of it she really understands I don’t know, and I worry irrationally all the time. This is normal, right?

I remember after the terrorist attack in Paris in 2015, I didn’t sleep for about two weeks. I got paranoid about every little noise in the night, about being in crowded spaces, about helicopters and planes overhead. And I’m not sure why it worried me so much, because I remember going to Coalisland (In Co. Tyrone, Northern Ireland) every weekend with my parents as a child and being stopped by soldiers at the border. Both of my parents worried about their Southern Reg car – it was dangerous at the time and it certainly made you stand out as an outsider and in the wrong area, a prime target for petrol bombs. As kids we were terrified, but mum and dad seemed to take it in their stride. They were used to it, it didn’t faze them. And if it did, they never let it show.

What  were they supposed to do, never go north? Or move back up and never go south? They did neither. We continue to travel back and forth to see our family, and will always do so, even if Brexit does mean tighter borders between the UK and Ireland (and after the attack at the Ariana Grande concert in Manchester this week, it’s looking like a possibility).

Our world is not safe, yet it has been reported that never before in history has it been safer to be alive. Polio, the plague and other diseases are almost entirely eradicated. Vaccinations against deadly diseases such as measles and malaria are widely available. Life expectancy is now into the seventies at least. And we will be spending the rest of our lives worrying about terrorism, bogeymen, rapists and the likes.

Listen, I’m not suggesting for one second that we should let our guard down and ignore what’s going on in the world. Nor am I saying ‘oh well, the world is an evil place, sure what can we do?’ Of course we must be seen to be strong in the face of barbarity. But our children deserve to live free of fear, because they are going to spend enough time worrying about things. Our children deserve to live, and to try and carve out a legacy to leave behind them for their own kids. They deserve the freedom to make their own mistakes and the freedom to recover from them.

They should be free to ride their bikes into the sunset, embracing the sweet smelling fragrance of a summer dusk.

RIP to those who were killed in Manchester 22.5.17, and condolences to your families.

Memories of Mum

As the most loyal of my followers know by now, May 7th marks two completely separate events: my little sister’s birthday and my mum’s (now eighth) anniversary. Of course they’re not separate at all; every year until the end of time (or of our family’s time anyway) we will think of the joy that Laura Ann Maye brought into our lives while weeping for our beloved mother who we miss more than words can describe.

Laura is twenty-eight this year, but it’s hard for me to think of her as older than eighteen, getting two birthday cakes at her birthday dinner and screaming as her hair caught fire from the candles. She’s in Helsinki now, working as a Postdoctorate Research Fellow at Aalto University (I double-checked this on Facebook), and yet I still think of her as my ‘little’ sister even though in many ways, she’s more of a grown-up than I’ll ever be.

Every year, memories come flooding back to me, and as I’ve already extensively spoken about my grieving process, I thought I would instead share some of them with you to show you what an amazing, quirky, and often downright inappropriate lady my mother was.

  • ‘Girls! Oh my God girls, get up quick, it’s 8.15! You’ll be late for school!’ I jolt awake, not even thinking about how dark it is and turn on the sitting room light to discover that it’s not 8.15, it’s 3.45am and mum has looked at the clock backwards.
  • Interesting fact – mum handmade all of our communion dresses as she disapproved of the ‘poofy’ look. Everyone thought mum had bought mine in Laura Ashley. Mum also handmade a lot of her own clothes – jackets, dresses, skirts, waistcoats.
  • Mum was the worst at accumulating shite (no other word for it), collecting keyrings, little notebooks, Harrod’s beanie babies, candles, little pebbles. That was fun after she died, trying to decide which collection meant more to her! Not.
  • Mum was an artist. In her early days she did a lot of portraits, then she went through a phase of drawing violins, then front doors surrounded by pretty flowers. She made her own Christmas cards. She even painted designs on the little doorknobs on the kitchen presses. She loved bright, bold, primary colours. She did an interior design night class in Portabello College. If she had pursued this line of work. she’d be famous now. Beyond a doubt.
  • I have a ridiculously sweet tooth, something I inherit from my mother. It was her that introduced us to sticky toffee pavlova and knickerbocker glories. Honestly, I don’t know how we’re all stick thin either. Think that my siblings and I should donate our bodies to medical science.
  • I wouldn’t classify my mum as a scary person, but by God – the day she found out I’d told Sr Concepta in fifth class that my computer at home was broken and I had to write everything down (which was a lie, I just hated the computer) she called into the school, marched up to my class and said ‘Sarah Maye, get your ass out here right now!’ She ate me. Till the day she died she never lived it down.
  • We did get to spend some quality time together though, like all the times we went for various appointments, first in the CRC and then in Musgrave Park in Belfast. I remember walking up and down corridors and halls with these bobbly things all over my thin little legs and mum telling me I was modelling these special diamonds. I also remember falling in love with the doctor in Belfast (I was ten) and mum telling him all about it. Morto.
  • I also remember coming home from a respite holiday in Roscommon when I was eighteen and walking in the front door. The first thing my mother said was ‘What the hell is that thing around your neck? (It was a new chain, from JP) Who is he?’ After explaining to her that I’d met a boy and we were now an item, she smirked, took up the A4 pad that was on the coffee table and started explaining the birds and the bees, with explanatory diagrams. Lads, I’m not joking – she knew what she was doing because it was the best contraceptive ever. A year later and JP and I were still nervous of leaving the ‘holding hands’ stage. All I could picture was that bloody diagram.
  • I’ll never forget the day that Laura came home for the first time, and mum saying I couldn’t hold her until I fastened my dungarees on my own. The fact that I remember this should illustrate how real the struggle was. She placed her in my arms and I remember thinking how tiny she was and more to the point, how unexciting she was. For a while all she did was snooze in her Moses basket and lie there waiting to be fed and changed (lazy git). I couldn’t wait for her to grow up and play with me. And to be fair she, Stephen and Alex were the best siblings ever.

    But Laura and I are close too. I’ve been privileged to watch her through school and attend both her college graduations. Laura, I’ve no doubt that mum is immensely proud of you and what you’ve achieved. And it’s so unfortunate that your birthday is also her anniversary, but you know what? She wouldn’t want you to be miserable on your special day.

So have a lovely day and don’t feel one bit guilty about it, because the 7th May may have taken Mum from us, but it also brought you, and we are all so lucky and grateful that it did xx

1-7 May: Maternal Mental Health Week

I was just scrolling through Facebook this evening, you know, doing some important web-based research, when I saw a post saying that it was Maternal Mental Health Week this week (May 1-7). According to talkingmums.com, up to one in five women experience mental health issues either during pregnancy or in the year following birth. Yet, out of these women, only 7% of them are typically referred for specialist help.

How many of you, like me, have suffered from PND, yet never admitted it to a doctor or health professional? How many of you out there are still suffering?

I’ll never forget the moment I knew for sure I was suffering from PND. Alison was only three months old and we had just discovered (or rather, the Public health nurse finally believed me) that she had a cow’s milk allergy. We had Ali put on special formula. She started gaining weight and became the happiest baby ever, sleeping through the night and everything.

I should’ve been happy, but I wasn’t. Relieved, yes. Happy? No.

All I wanted to do is disappear. I was just waiting for the right time.

I had this vision of having PND as standing over your baby’s cot with a pillow in your hand or wanting to throw your baby down a flight of stairs. While I appreciate that some women feel like that (and this doesn’t make you a bad person – you’re unwell and need help), I didn’t. I felt that my daughter was the most perfect person in the world and that she must have done something truly horrible in life to end up with a mother like me.

I didn’t know that PND meant looking in the mirror and being repulsed by the pathetic specimen staring back.

I didn’t realise that ignoring it wouldn’t make it go away. I ended up in the doctor with chest pains, shoulder pains, stomach aches and yet the doctor couldn’t find physiological reasons for any of them. She prescribed painkillers which didn’t seem to help. I always denied feeling down or depressed. Big smile on my face. Sure what would I have to be depressed about?

By May 2014, I could barely get out of bed. I wasn’t eating properly. I was crying all the time; it was all  I seemed to want to do. In order to get from one end of the day to the other, I had to measure my time in hourly units. Then half-hourly, and towards the end, minute by minute. If I can hold myself together for ten more minutes I’ll be grand, I would think to myself. But of course, I wasn’t grand – far from it.

When I took time off work, I considered my treatment options. I know it sounds ridiculous and shallow, but the thought of going on antidepressants filled me with dread. I wasn’t too keen on counselling either as my previous experiences were quite negative. But I knew I had to do something, so I started writing. Writing how I felt. Writing about my flaws. Writing about my talents. Suddenly, I felt liberated. I’m not recommending this course of action over medication or counselling, but writing was my saviour. It’s something I enjoy, am (reasonably) good at and writing my thoughts and feelings down helped me to own them, and then let them go.

Postnatal Depression has changed me into someone different to who I used to be. I am more sensitive now, and I hate myself for it. I’m still conscious of how people perceive me as a mother. In addition, I now have to make a conscious effort to look after my mental health, to recognise the signs of feeling sad or overwhelmed and act on them before they take over. I also have to be careful. I love helping people, but I have a tendency to internalise their problems to the point where they become my own problems. Sometimes I need to step back, say no and this is hard. I hate doing it.  But I have to remind myself that if I don’t mind myself, I can’t help others.

This week is National Maternal Mental Health Week, and while it’s great to have a platform to write about PND and mental health, the issue of maternal health shouldn’t be confined to a mere seven days of the year. We need to open up the conversation to all mothers, make them feel supported and not feel alone. When I published my long preamble about my experience with PND, I was convinced that either no-one would read it or that it would be dismissed as being a tad melodramatic. What I didn’t expect was the hordes of girlfriends, as well as women I’d never met, emailing me their stories and reminding me that I was not alone. Thanks to those women for validating my story and for making me feel that my depression was completely normal.

And if you are reading this, and you are silently suffering from pre- or post-natal depression, you are not alone either. Look after yourself and get the help you need. Trust me – even mothers who appear to be perfect can suffer silently.

You are worth the help. And after the fog lifts, life becomes so much simpler.

You are wonderful. You are beautiful. You are everything to your children, and they deserve you just as much as you deserve them.

But you can’t pour from an empty cup, so look after yourself.