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.

National Carer’s Week 12-18 June

This week  (12-18 June) marks National Carer’s Week, which is an initiative designed to give recognition to the estimated 180,000 unpaid carers across the country. These people are hailed – and rightly so – as heroic. Many carers have given up dreams of marriage, having a career, maybe juggling caring with raising a family. It’s noble and admirable, yet I find something deeply troubling about the narrative surrounding carers in Ireland.

I probably don’t have any right to be writing this blog.  I’m lucky insofar as my care plan doesn’t currently involve intimate personal care, just help with things like tying up hair, doing buttons etc. I mentioned before that one of the things I value most is my independence. That, and not being labelled a burden.

As a mother of one little girl, I’m ready to plop myself on the couch by eight o’clock in the evening. I love being a mother more than I ever thought I could, but sometimes it can be exhausting – answering incessant questions, doing role plays, going to the park. And this is without having to take care of toileting needs, inserting feeding tubes or anything like that. BUT I would hate to be in that dangerous position where I would view my own daughter more as an object of care than her own little person.

Traditionally, when a disabled person has a child, it is often assumed that the child will take on the role of a carer. Well, let me tell you – Alison has her little chores for which she gets rewarded, but she is not a carer. I have an excellent personal assistant service (not carers) that enables me to be the best mother I can be. I myself direct the Personal Assistant in what I need, and doing so allows me the energy during the day to write pointless blogs like these and spend some quality time with my daughter in the evening. And it allows my husband to enjoy an existence separate from me. I don’t have to worry about him harbouring resentment for me, because I’m not completely dependent on him. We are very much an average husband and wife.

It is harmful to reduce the identity of a person who has ‘high-dependency needs’ to an object of care. Everyone has the right to personal autonomy, to choose how and where they spend their day and with who. I know if I had ‘high dependency needs’ I wouldn’t want my parents, my husband or my child caring for me. I’d want someone fresh, not so emotionally involved, someone who could appreciate my individuality as well as know how to meet my needs. These sort of people are hard to come by. A FETAC Level 5 in Healthcare Support is useful from a practical point of view, but there is a danger that service provision is becoming overmedicalised, with less emphasis on finding out what the person actually wants and more about ticking boxes and providing a basic care plan and often wholly inadequate service.

If this government really cared about the needs of disabled people and their carers, then they wouldn’t dare contemplate cutting the Personal Assistant Hours or the hard-to-come-by Respite Grant. Instead of having a tokenistic approach to unpaid carers by dedicating a measly week to them, the government could alleviate the workload of carers by looking after the needs of the disabled person themselves and, as the late Martin Naughton suggested, allocating them funds so that they (and their families if appropriate) can choose the services they need. Martin called this putting disabled people ‘in the driving seat of their own lives’.

I’ve spoken to people over the last number of years who regard the possibility of acquiring a disability or impairment as ‘a fate worse than death’ and who, like me, would hate to become a burden on their families. But this attitude is a dangerous one. Centuries of conditioning has led us to believe that it’s our impairment that is the problem, and it’s not. It’s the manner in which Irish society and our healthcare system are constructed to make disabled people feel like they’re somehow ‘wrong’, problematic, inconvenient. We are now the only EU member state that hasn’t ratified the UNCRPD. In the UK, disabled people who cannot work are labelled ‘scroungers’ and I can see that attitude creeping in here now. I now believe that positive change is not progressive, and can be undone more quickly than it happened in the first place.

To all of you unpaid carers across the country: I salute you, and keep up the good work. You deserve recognition, not only this week, but every single day. But can I ask a favour? Please join us in challenging the system. Please don’t resent your loved ones for the care they need. They are not at fault. All of our lives would be so much easier if the dignity of disabled people and their carers were upheld through the provision of basic human rights.

 

D-Day

It’s the first day of the Leaving Cert exams, and I can’t stop thinking about my godchild, whose christening I remember as if it were yesterday, going in to sit what she’s been told are the most important exams of her life.

I was listening to the radio yesterday (not sure who – Matt Cooper, perhaps?) who was talking to students on air and generally saying listen – the Leaving Cert is important, but not that important. Study, but don’t stress. It’s not the end of the world. The Leaving Cert is not the be-all and end-all.

That’s certainly not the impression I somehow got when I did my Leaving Cert, fourteen years ago. I did Transition Year the year before, and I had been on a respite break with seven other friends with disabilities during that year (incidentally, that’s where I met my husband). The message I got from that week was that the best prospects for disabled people was in doing a computer course or going to the National Learning Network to do an endless string of courses in job preparation. Has my journey through mainstream education been a waste of time? I thought glumly. Now don’t misunderstand me, or interpret my reaction to be borderline snobbery, but I was afraid that society was trying to mould me into something I wasn’t. These courses are great, but I do think that students with disabilities should feel that anything is possible.

So, as a statement against the status quo, and because I wanted full control over my future, I decided that the only way I was ever going to do this was to get 500+ points in my Leaving Cert (yes, I am a little mentally unstable-how did you guess?) For nearly two years, I threw myself into my studies. I don’t know how I still had friends at the end of it because I never went out to the Harriers or the Bridge House. I don’t exaggerate when I say I spent a solid six hours after school, studying. Soon I became obsessed. If I was going to spend the time studying, I had to be the best. If I got 75% or less in a class test I would openly bawl my eyes out.

I remember my dad saying to me about a month before the exams that if I didn’t slow down, I would have a massive heart attack and be dead before the Leaving came around. He was so worried that he threatened to stop me sitting them altogether. I looked at him incredulously! What did he know? How could he possibly understand how it felt to be the only person in my year with a (visible) disability and so much to prove? Didn’t he know how important these exams were to my future?

No, and he didn’t care. Neither did mum. What they did care about was the fact that I had no friends apart from John Paul, about the fact that I couldn’t relax, or take an evening off study without having a massive panic attack, about the fact that at 12 o’clock they would walk past my room on the way to bed to find me still studying, my books sprawled all over my bed and me panicking because I couldn’t memorise that Irish poem or the ins and outs of the heart in spite of studying all evening, probably on little or no food and definitely no rest (food and rest is for the weak, yo.)

And yet, it paid off. I got enough points (bang-on enough) to get into Trinity to study English (the DARE scheme may have helped a little). The relief was immense; it took a long  time to get used to not stressing out over the Leaving. And just when I became accustomed to calmness, I had my dissertation and exams to worry about! I really wanted an Honours Degree, and I did study just as hard (albeit in the final few months!) and it paid off…

…and now I am a writer, spending day after day writing and researching, blogging and editing. Did I need a good Leaving Cert to do this? Was it worth the hardship? Personally, in spite of the hellish experience that was my Leaving Cert, I don’t think it’s fair or right at this point to be dismissive of its importance. How can teachers, parents, society think it’s okay to spend two years of a student’s life drumming into students that this is the most important exam they’ll ever sit, and then turn around afterwards and say that it wasn’t that important?

Yes, it’s true, no-one ever asks how many points you got twelve months later or (unless you’re an Irish teacher) you’re never asked about the main themes of A Thig Na Tit Orm. And yes, many of us do want our children to have a strong work ethic, but at what cost? Why are we still sending out the message that your worth as a person is based on one set of examinations, and lying to our young people, saying that it could shape your future for the worst or the best?

Because I’ll let you in on a dirty secret: your worth is not how many points you get. It’s how you use your talents to shape the future, be that through medicine, teaching or volunteering to help others. And guess what? Learning is fun – it’s true! I don’t mean school – I mean the learning you choose to do. I’ve done three correspondence courses so far and it wasn’t about the marks, it was about accomplishing little challenges. I loved them and can’t wait to do more.

So do your best in your exams, and spend the summer doing some proper learning. Learn how to cook, how to use the washing machine, how to budget. How to get a week’s worth of groceries for €25 so you can go out on a Thursday night. Meet new people and learn how to tolerate their quirks and annoying habits.

There are no grades, but these are lessons you won’t forget.

And Caoimhe, best of luck. No matter how these exams go, never forget that you are a kind and wonderful person and we all love you so, so much xx

My Literary Inspiration

Sometimes (okay, most days if I’m honest), I find myself asking why bother. Why writing? Why not an office job, a nine to five with a steady income and job security? On days when I have to drag  the words out of my head kicking and screaming, I end up on job vacancy websites, sobbing into my laptop as once again self-doubt, in all its cruel and soul-destroying glory, sneaks in again and does a happy dance in my stomach.

This happened again last night, when I had so much to do and couldn’t settle. I scrolled through the Word document that will be a novel some day (I’m trying the power of positive thinking starting….now) and I watched helplessly as the words seemed to merge into one big blob. I have to walk away when that happens. The temptation to end the struggle once and for all using just two buttons, delete and enter, is much too great when I’m in a panicky, confused state of mind.

But I digress. I got to thinking why I wanted to write in the first place. Louise O’Neill, award-winning author of Only Ever Yours and Asking for It (and, as far as I remember, sat in a few tutorials with me in Trinity- her and Ken Mooney are my claims  to fame) credits Margaret Atwood’s The Handmaid’s Tale (now a major TV series) for igniting her need to write. Incidentally, I’m a Louise fan too, and in particular Asking for It raises some serious questions about how we perpetuate rape culture and how we need to exonerate the victim of responsibility. After all, you wouldn’t ever say that a murder victim was partly responsible for their own demise, would you?

I’m an Atwood fan too, though the book that changed my life was Cat’s Eye, a novel detailing the complexity of female friendship, the far-reaching consequences of emotional abuse by a loved one and the struggle of trying to live with regret. Atwood is the master of description, and in Elaine  she created a complex character who is a product of her past and her regrets. In fact, if I think about it, this is what I’m trying to portray in my character as well.

Another book that changed my life was the text I read for my Junior Cert, To Kill a Mockingbird by Harpur Lee. I had read widely up to that point, mainly for pleasure, and Mockingbird was the first time that I considered that a novel could be a vehicle of promoting activism. Lee’s depiction of the inherent segregation of people in the sleepy town of Maycomb, Alabama and the widespread normalisation of discrimination, demonization even, made me feel cold. As a child narrator, Scout is taught both directly and indirectly, to judge people based on their differences, and yet Lee offers hope to the narrator. Yes, the innocent Tom Robinson, convicted of the rape of Mayella Ewell, is wrongfully convicted and later killed for trying to escape prison, but Scout learns to recognise humanity. In the touching scene where she meets the childlike Boo Radley for the first time, we learn that it is our perception of others that creates divide and not our tangible differences.

I still have nightmares about this last book (by no means the last book to have influenced my writing, but nobody will read a 4000-odd word blog about  it), George Orwell’s 1984. Like any good dystopian novel, the world of 1984 is not too far from the world we live in now. It’s a world in which the inhabitants’ thoughts are not really their own, where there are cameras everywhere, even in private homes, and where news stories are rewritten  to suit the agenda of the State and the real facts are chucked into a ‘memory hole’. Winston, an ordinary working class bloke, starts to question the oppressive regime under which he lives. He lives in a world where he cannot trust anyone, where he is not even allowed the privacy of his own thoughts. The reason why I had nightmares about  this book is because Winston is beaten into submission when he is placed in a room of rats. Loyalty means nothing in 1984, and neither does friendship or compassion. You think and do what you are told to think and do.

Sometimes I wonder whether I’d really be able to write a novel that would have the same impact on others as these three have had on me. Yet that little annoying voice inside says that I have to keep trying, because as far as I’m concerned, it’s better to have tried and failed than never tried at all. Right?!

The Innocence of Anna

Yesterday, my dad called in and delivered an unexpected surprise: an old newspaper article from 2001, written by two of my Transition Year classmates about the performance of my play, Waiting for Anna, in the Sacred Heart School. The paper itself is now tatty, dog-eared and smells damp, but the memory of that period of my life is as clear and fresh as if I were seventeen years old again.

 

waiting for anna 30007

Aforementioned Article published in the Offaly Express, 5 May 2001

 

A year before, I was sixteen, getting ready  to sit my Junior Cert with only a vague idea of what I wanted to do with the rest of my life. I hated study at the time (yes, believe it or not) and the prospect of going into fifth year made me feel sick.  So, in spite of the fact that I would be nineteen leaving school, a year older than 90% of my peers, I decided to do Transition Year and chill out. Little did I know that there’d be little chilling involved!

To get into Transition Year, there was an interview process. I was nervous and when it came to my turn, I was asked what skills I had to offer either by way of the Mini Company or other projects. Before the thought of writing a play had crossed my mind, the idea fell out of my mouth into the thoughts of Ms F, who was interviewing me to determine if I was a suitable TY candidate. Within twenty-four hours Ms H, the drama teacher, had sought me out and congratulated me on committing to write the TY play. It was madness. The only play I’d ever read was Romeo and Juliet, and I suppose Waiting for Anna does share similar themes: two teenagers falling in love against their parents’ wishes, running away to be together. Thankfully nobody dies; that’d be a tad extreme.

I set to work in the summer of 2000, spending all my time at the computer typing, composing, tittering to myself. I decided to have fun because I didn’t think anyone was ever going to actually read it, let alone play it out on stage. I got to know all the characters individually, each one based (and named after) someone I knew and loved. I laughed out loud, I sobbed into my chest. The first draft was completed on the 13 September 2000, at twenty pages long.

Writing Waiting for Anna was the most pure writing experience I’ve ever had. I had no perception of myself as a writer; it was just something I wrote. I never thought to edit or censor myself either, and all in all Ms H took very little out. Handing it over to be read by my classmates is one of the hardest things I’ve ever done. In the beginning, they  didn’t know I’d written it and felt free to pull parts of  the dialogue apart and make it their own, although these occurrences were rare. As the writer I was more than happy to walk away and leave my friends to their  own interpretations, but then Ms H insisted that I co-produce the play as well.

Anna consumed me. In many ways I became her. She was the unwitting victim of psychological and financial abuse at the hands of her boyfriend Tom, but this wasn’t a straightforward ‘good vs evil’ story. Tom’s life had been hard, whereas Anna came from a privileged background. Tom wasn’t evil; in fact he had a lot to be angry about: having to leave school early, losing his mother and bound to support his hapless, unemployed father. All he wanted was control over his life. And believe it or not, even though I wrote the bloody play, I can only understand Tom now, nearly sixteen years later.

And here I am, sixteen years later. trying to forge a career for myself in writing and finding myself envious of that confident seventeen year old who didn’t know any better. I miss her. She wasn’t self-conscious about every little thing that she wrote. She didn’t care who she offended as long as her message got out there. She would’ve had the confidence  to throw herself out there at the mercy of an unreliable audience.

She wouldn’t have hordes of short stories hidden away on her laptop, never to be read by anyone.

She would have finished her novel months ago without giving two flying figs how it would be received, if it made sense or if people would relate to the main character.

Some people become less self-conscious as they get older, but I seem to have become more so. A lot of it has to do with being a disabled parent, but that’s not the whole story. I’ve been told, both by people who know me and people who don’t, that their favourite blogs and stories of mine are ones where I share my own experiences. I do believe that the best writing has passion and personality and reveals a bit about the author, and yet doing so makes me nervous. Every time I press that ‘publish’ button up there, for a second I feel physically sick. Why do I do this to myself? What if I’m being annoying, repetitive, or coming across as self-righteous? Is it time to revisit the idea of getting a normal office job, and ignore the little voice that says I’m happier as a writer?

Obviously, owing to a lack of time-travel facilities, I’ll never be seventeen again, but hopefully that doesn’t mean that I can’t learn how to write again without the burden of self-consciousness.

As my friend used to say ‘what other people think of you is none of your business.’ Maybe, one day, I might fully agree with her.

 

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.

Enda the Line

 

Finally, after what seems like an inappropriately long wait, Enda Kenny stepped down as party Leader of Fine Gael at midnight on Thursday 18 May, and a new party Leader will be announced by the 2 June.  And predictably, many people in this country, including myself, are reflecting on the work (or damage, depending on who you’re talking to) he’s done over the course of his time as Taoiseach. Many of us will not be sad to see him go, especially the many people with disabilities that he’s let down so badly over his term.

Now, I am not saying that by any means that Enda had an easy job. Nor am I denying the fact that his predecessors, Bertie Ahern in particular, left a massive mess behind that Enda would have to clean up. However, during Enda’s time as Taoiseach, I have witnessed a frightening change in the narrative of disability in this country. Perhaps it’s merely age-acquired wisdom, because I don’t remember feeling this trapped as a disabled person during the early noughties. I went to college, I found it easy enough to find summer work and for a very brief period, I was even naïve enough to view myself as equal: willing to contribute to society and worthy of respect for it as a result.

I was just watching an interview activist Joanne O’Riordan had with Gay Byrne’s RTE series The Meaning of Life, in which Joanne discussed her experience with Enda Kenny. Kenny had promised her that the funding for P.A. (Personal Assistant) Services would remain untouched, and then turned around and delivered the blow that a whopping €130million would have to be taken from the HSE Budget, including a €10m cut to the P.A. budget. This soul-shattering announcement demonstrated how little our Taoiseach thought of our lives. This announcement drove activists with disabilities to sleep out in the cold for three days outside Leinster House until these cuts were reversed. It was both a victory and a slap in the face for people with disabilities, because although we were listened to, we realised that we would always have to take drastic measures to have our voices heard.

I worked in the area of Independent Living for seven years, and Enda Kenny was Taoiseach for four of those (since 9 March, 2011). Part of the reason I made the tough decision to leave my job in 2015 was because I found it too difficult to watch, as I saw it, the degeneration of the Independent Living Philosophy. When I joined Offaly CIL first, I was told to have passion. I was encouraged to get excited about equality for people with disabilities, to see the Personal Assistant Service as the key to achieving this equality. I was told that Independent Living was about freedom, control, choice. It was a liberating service with its own unique history and philosophy.

For me, Enda Kenny’s government destroyed all of that. Suddenly, service provision was about a hierarchy of needs, and the service became more about covering the basics rather than encouraging ability and individuality. When I spoke to people about this great ‘philosophy,’ I felt I was lying to them. I would ring my fellow Leaders and ask them to come into the office for a coffee and a chat, and they would tentatively ask me ‘are my hours going to be cut?’ I have to hand it to Offaly CIL, they did and still do resist cutbacks and they go above and beyond to protect Leader’s hours. But it infuriates me that because of Enda Kenny’s nonchalant attitude towards disability that my fellow Leaders continue to live in fear.

I’ll never forget reading the coverage of the three-day protest Martin Naughton led outside the Dáil in 2015 (unfortunately, I was out of the country at the time – yes, I really am just an armchair activist). Martin was asking for the opportunity for people with disabilities to have more control over their own lives by allowing money normally paid directly to service providers to be redirected to the experts, the person with the disability. The protest bore little results apart from a lot of negative press about Enda Kenny, with people by now being so annoyed with him that the focus from the public was more about what a complete tool he is as opposed to what Martin Naughton was asking for (the right for people with disabilities to truly experience Independent Living, in case you’re in doubt). And yet, even after talking to Martin and other disability activists, the future of our lifeline – the Personal Assistant Service – is constantly in jeopardy.

Oh, one more thing – some of you out there think that Leo Varadkar should take over as Taoiseach. And perhaps he should, but I’m personally a bit wary. Aside from the fact that our health system is currently a shambles, a report entitled ‘Make Work Pay for People with Disabilities’ recommends that people with disabilities keep their medical card, as well as raising the current cut-off point of €120 before they start to lose their Disability Allowance. Now, don’t misinterpret me – this is great progress – but given that a report from Inclusion Ireland in 2014 estimates the weekly cost of disability to be €207, it seems that there is a long way to go before people with disabilities can expect a decent quality of life. Also, there is a fear that this system could force people into work that they are genuinely incapable of, a bit like what’s happening in the UK at the moment.

So goodbye, Enda Kenny. Undoubtedly you did many great things for many people across Ireland during your time. You’ll have to forgive the disabled population of Ireland for struggling to remember exactly what they were.

And a quick message for your replacement, whoever you may be: We as people with disabilities have put up with enough shit over the last nine years to last a lifetime. We definitely are not in the mood to tolerate any more. Just thought you should know that.

Night off work

 

Me: I think I’ll take the night off.
My conscience: But you’ve got so much work to do.
Me: I’m tired, and not in the mood to work.
My conscience: You’re not going to get far with that attitude are you?
Me: I’ll feel better in the morning, and I’ll work twice as hard tomorrow.
My conscience: Hmmm, sure. And you have the cheek to wonder why your novel isn’t finished yet?
Me: Hey, I deserve a night off. I have a kid, kids aren’t easy, you know.
My conscience: You have one kid, she’s five and let’s face it, she’s far from a handful. (Pause) You know, you’d get so much more done if you deleted your facebook account.
Me: I only check it to see how my blog is doing.
My conscience: Hmmm-hmmm. Yeah, sure. Not to randomly scroll through photos.
Me: Oh here, forget it now, I’m definitely taking the night off. I need this.
My conscience: Ah, go on. You might as well. And if you want, we can even call this conversation work, if it makes you feel better.
Me: (eyes misting) Thank you.
And that’s Tuesday’s work done and dusted.

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.