Round my Hometown

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I was born and reared in the Midlands town of Tullamore for nineteen years.

Between the ages of nineteen and twenty-five, I decided to spread my wings and I moved to Dublin while studying in Trinity. I loved Dublin and living independently, and I think my favourite part was being able to get around so easily, whether it was in my electric wheelchair or using public transport (buses and Luases, I mean. The DART is notoriously dangerous and unreliable for people who use wheelchairs or have mobility difficulties). The Luas in particular became my lifeline when I was living out in Rathmines, and I used to use it coming into work in Trinity during the summer. When somewhere is easy to access and get around, it really adds to your quality of life. At one point, I was both working and studying. It was great.

Although I loved Dublin, I knew that I couldn’t afford to stay there after I graduated. So I moved to Mullingar, then Portlaoise before finally choosing to stay in Tullamore. It was great to be in a place that I felt I belonged in and that I thought I could get around easily and independently. And to be fair, I could – until I started using a wheelchair. Suddenly, certain areas of Tullamore didn’t seem so welcoming to me any more.

I’ve always believed that disability is defined by the obstacles that are created by society rather than one’s individual impairment, and I believe that reasonable accommodations such as ramps, clear signage, wide step-free doors and loud signals at pedestrian crossings can go a long way in ensuring our town is accessible to all who use it. In 2014, the Offaly Leader Forum (now the Laois/Offaly Leader Forum), which is a group of people with varied disabilities – physical and sensory – organised and conducted a full-scale accessibility review of Tullamore, the first of its kind in ten years. As people with disabilities, we were the experts in identifying barriers to access in town. The group took the undertaking seriously, taking photographs and compiling reports, and subsequently these reports were compiled into a hundred-and-one paged document, an impressive achievement by any standards. We then presented it to town councillors in Tullamore Town Library (which is accessible, according to our audit) and urged them to see Tullamore through our eyes.

Since making our presentation, the Laois/Offaly Leader Forum has established good working relationships with our town councillors, who we have met with several times to voice our concerns. Through doing this, we are now working together, and we have urged the council to consult us whenever they make changes in the town. And recently we discovered that our annoying persistence is starting to pay off.

Little changes and repairs are taking place all over town, but for me the most significant of these is  the ramps that have now been installed on the top of Main Street and at the Srah Roundabout. I live in Glendaniel, which is ten minutes’ walk from the Town Park, Lidl and Alison’s primary school, Scoil Mhuire, and the installation of these ramps means that I no longer have to proceed beside the footpath on the road onto traffic coming off the roundabout. It’s safer for me, my child and for the poor drivers who I’m sure don’t want to dent their cars on my wheelchair…! And the best part of the repairs is the knowledge that as a group, the Laois/Offaly Leader Forum, were taken seriously and listened to. But then again, we were dealing with people we knew for years, and people who have always supported the Laois/Offaly Leader Forum, for example Eddie Fitzpatrick and Declan Harvey (among many others, of course). Isn’t that the most important thing: being able to truly be an equal part of your community?

Now, more than ever, I’m looking forward to raising our child in a town that means so much to me. The town where I went to school, and developed a passion for writing. The town where I got my first summer job in the Tullamore Tribune, as well as my first ‘real job’ in the Offaly Centre for Independent Living Ltd. The town where my neighbour, who used to live eight doors down us, remains my best friend.

I have to admit, Tullamore always was a pretty great place to live, but with these little changes to our town, it can become a great place for everybody to live independently.

The Trump Card

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Like all of us, I woke up this morning to the horrible news that Donald Trump has been elected President of the United States. (Slow clap for those who elected him). Everybody I’ve spoken to so far is absolutely terrified of the wider-reaching implications this will have. Acclaimed author and recently turned television presenter Louise O’Neill wrote a long status on Facebook this morning expressing her fear for all people, including women, children and people with disabilities.

Once I saw the words ‘people with disabilities,’ I knew I had to write something in response.

Being an average Josephine on the other side of the pond, I can’t see what (some of) the people of America would see in Trump. He’s rude, obnoxious, racist, sexist, and every other ‘ist’ you can think of. He’s a modern day Hitler, with a warped vision and he doesn’t care who he has to hurt, sideline or destroy in order to reach this vision. But I have to admit, I wasn’t that surprised he was elected. The vast majority of people want change, but many are afraid of what would happen if it actually came about.

Just look at our own situation in Ireland for a second. We had a general election back in February, and everyone I spoke to about it was adamant that Enda Kenny would not get in again. His government made one of the biggest threats to Personal Assistant Services in the history of the State. Cuts made to welfare allowances, the creation of the giant money pit known as Irish Water… I could go on incessantly. And yet, our only alternative was to vote Independent (which I did) or to vote for Fianna Fail, who led the country into recession in the first place. (Whoever voted for Gerry Adams needs their heads examined).

So here we are again, and what are we going to do about it? Have a good old moan. Rant about it on Facebook. Write a blog.

After all, we can’t change the world, can we? We’re only small, insignificant people. So why bother, right?

This is exactly how I felt in work a year and a half ago. Working in the area of Independent Living for seven years and hearing about how hard people had to work to reach their goals. How many obstacles stand in their way: negative attitudes, inaccessible environments, fear of losing their benefits and their medical cards. I started to wonder how we could change all this, and my head hurt. And the more research I did into the discrimination against people with disabilities, the more disheartened I became.

Whether we are interested in history or not, our personal history, and our wider social history, are the cornerstones of who we are. And for me, as a disabled person (a person disabled by society) it was only when I became aware of this history that I developed a clearer understanding of what I was up against. Hitler’s T4 Projekt, which involved the ‘mercy killing’ of an estimated 700,000 people with disabilities, was a horrific act, but yet people with disabilities continue to fight for their basic rights, to live in their own homes, to do whatever they want whenever they want, to be recognised as equal. Elsewhere across the world, disabled women across the world continue to be forced into sterilisation, for fear that they will inflict more disabled children upon society. This is perceived to be a bad thing, because society dictates that it’s a bad thing.

Now that I know about all of this stuff, I can’t unlearn it. Born during the wrong era, in the wrong country, this could’ve been my fate. Who knows – the way the world is going it still could be.

As many of you know, I’ve been trying to  write a novel for over a year now, and the theme of the novel is exactly what I discussed above. It’s about a woman with Cerebral Palsy who’s been moulded by society’s low expectations of her, about her struggle to express her individuality in a world that wants to define her, and how, like all of us, the past has left a permanent impression on how she sees the world and her thought processes. Can a person ever be separated from their past?

Can our society?

The majority of us want a fair and equal society, but unfortunately this may have to happen in spite of, not because of, those in power. From the moment we are born, we are part of a machine. Some of us are seen as the core components, others merely the decorative extras. Some still are perceived to be the silicone packets that come in handbags – no-one seems to know what they’re for. We still live in a world where physical ability is prized over everything else, where impairment is seen as a weakness, where medical advances and robotic legs seem to be favoured over inclusiveness and equality for people with disabilities.

So Donald Trump is now the president of the US, and I think that instead of tearing our hair out we need to remain strong and calm, be we people of colour, women, men, children, people with disabilities. We need to look to the future and strive to achieve the world we want to leave to our children. We need to stand together, exercise love and understanding, and never settle for anything less than acceptance and equality. Change will only happen when we instigate it

After all, history should be used as a lesson. And if we don’t learn from it, then we shouldn’t be surprised when it repeats itself.

Halloween Tricks and Treats

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I am absolutely exhausted. I keep forgetting that I’m not Martha Stewart and I’ve spent a good part of today baking and making little treats with Ali. JP says that we were making memories, but that’s not what I would’ve called our kitchen circa 3pm this afternoon. Think confined space, sticky gloop and hand grenade. Funny how none of that is captured in those expensive baking magazines, eh? (In hindsight, marshmallow top-hats would’ve sufficed. Making muffins was pure madness, especially for someone who is almost allergic to baking).

Ali was harping on at me for ages to have a Halloween party, but to be honest, I don’t think Halloween is that big a deal. It certainly wasn’t in our day, when the majority of costumes were plastic masks and bin liners (I haven’t seen a kid in a bin liner in yonks). I certainly don’t believe in holding unnecessary gatherings which require cleaning up of any description unless it’s not in my house. We didn’t have Halloween parties, although some of the other children did. They were weirdly extravagant affairs, with material costumes and Halloween decorations.

I remember how I used to almost resent mum for this lack of effort, for this apathy towards what was such an important holiday. She didn’t even let us go trick-or-treating on our own: instead, we were bundled into the back of the car and escorted to her friends’ houses, where we would stay for half an hour at a time. I wasn’t impressed that she would let my older brother Steve go by himself. I remember the really early days, when Steve was still trick-or-treating, emptying our bags, trawling for cash. We’d usually be able to stump up about four pounds and Steve would walk to Egans the next day and buy four hundred penny sweets which would be long eaten before we’d touched all the monkey nuts we accumulated.

I  don’t think anyone in our house liked Bairin Breac, so every year mum would bake two apple tarts (which we sometimes ate after Trick-or-Treating) and hide punt coins wrapped in greaseproof paper. No ring shite for her; she made mauling her apple tart worthwhile. She also bought sweets for the trick-or-treaters, which was rare at the time, and I know for a fact that certain trick-or-treaters changed costumes and visited our house more than once! (Won’t mention names though – the past is the past and all that). And that was Halloween.  No frills, no party games or bobbing for apples. Pretty boring really.

And then one Halloween night, in 2001 to be exact, Dad got a phone call to say that his mother had passed. He looked so forlorn, so lost, and so tired, having only come in from work fifteen minutes before.  Fifteen years have passed, but in many ways it doesn’t feel like it. It’s something that all we cousins remember even now. After all, gatherings at granny’s was often the only place we were all together, and now that was gone. Her wake and her funeral happened during midterm, and us girls went back to school, a little bit emptier.

As an adult, the feeling of loss is what I now associate with Halloween, but as a parent, I want Alison to remember Halloween for the right reasons. I want her to remember fun and happiness, and not sadness. I want her to remember the lengths we went to to decorate, to make treats, to enjoy each other. But sometimes I have to remember to calm the f**k down.

As scary as it is, there’s certain things I just can’t control. It’s taken me a while to learn it, and one day, she will learn it too. It doesn’t mean that I’ll stop trying to make her happy. Although next year, I might just decorate shop-bought madeiras instead. And in doing so, I’ll be teaching her something important: there’s no point in trying to be something you’re not.

The Beauty of Writing a Novel

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Anyone who knows me will know that for the last sixteen months, I’ve been working on my first novel. (Well, I say with optimism that it’s my first, but after this experience I may well decide never, ever to attempt this again).

I’ve dedicated myself fully to this project. I even bought myself a bigger desk, twice the size of the dinky thing I’ve worked at for the last year, in the hope that the words will flow as freely as they tend to pop into my head when I’m on the loo or cooking dinner. And, I have to admit, it works for the most part: I have my own ‘office’, I go to ‘work’ everyday, I set myself proper writing deadlines.

The truth is, when I started to write this story last July, it wasn’t supposed to turn into the massive 130,000 word mess it is now. It was just an idea that I had in my early twenties, one of many throwaway ideas that came back to me. I’d tried writing this particular story before, but got bored after 4,000 words, and assumed that the idea was unworkable. Little did I realise that in the space of nine years, this idea would become all-consuming and that I would never be happy, not really, until it’s out of my system. And hopefully, the first crappy draft will be written by Christmas, though I may be over-optimistic at this stage. (by the way, first drafts are supposed to be crappy, so I’ve been told).

Writing a novel is both tremendous fun and an enormous pain in the backside. I’m in control of my main character. I can make her do anything I like (although a lot of the time she goes off and does her own thing). Making everything tie together seems to be my biggest challenge at the moment, along with organically tying in important statistics and facts into the fabric  of my story.

And it’s tiring. At the moment, ‘work’ seems to consist of opening Microsoft Word and staring at the words for three hours. Some weeks are more productive than others, and it’s during the bad weeks that I try to tell myself that if this was a ‘real’ job, I would have to grit my teeth, sit at my desk and work regardless. I’m creatively wrecked at the moment, but I’m afraid that if I don’t sit at my desk every day and plug away at it, nothing will get done.

That, I think, is the crux of it. Fear. The fear of being made to look like an idiot if I can’t manage to get this book finished and into the hands of readers. Fear that if my book is never published that I might have to abandon the prospect of having a writing career and start all over again. fear that nobody will like my book, or understand where the main character is coming from. I have successfully managed to push fear just to the edges of my brain so that I can write freely. I try not to think of you guys, my audience, too much so that I can stay true to my character and the situations she finds herself in.

I’m also afraid of success (getting ahead of myself I know) and afraid that I am offering more  of myself than I’m willing to give. Having Martin Naughton pass away has only cemented my desire to continue, in my own small, insignificant way, to change the world. I don’t want my daughter to grow up in a world where disability is something to be pitied, an ‘other’. Nor do I want her to live in a world where the only disabled people worth talking about is the ones who ‘triumph over adversity’ ‘defeat the  odds’, achieve more than people expect of them. All of our stories are worth telling: the successes, the failures and everything in-between.

I don’t want any regrets on my deathbed, any ‘what-ifs’. All I want is to make a difference and not rest until it’s made. And writing’s the only way I know how to do this.

In this spirit of determination, I will keep going, in the hope that I have something worthwhile to contribute.

A Tribute to Martin Naughton: Activist, Campaigner, Friend

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I woke up with a start this morning, the darkness threatening to suffocate me. My sleepy brain told me that I had woken up in a world that was different than the one I opened my eyes to yesterday, which was the thirteenth of October, 2016.

Then I remembered. I felt my stomach close in on itself as the events of the last twenty-four hours rushed back to my memory: Martin Naughton, prominent disability advocate and all-round good guy, passed away yesterday aged sixty-two, following a short illness. There is nothing worse than hearing the news, via social media (so tacky), that someone who made such a huge impact on your life has died. At first I thought (hoped) it might have been a hoax, a rumour, but as the Independent and RTE published their stories, the reality of our loss hit home.

Everyone in the disability world knows Martin. He’s our representative, our ‘go-to’ guy. If the Independent Living Movement was a mafia, he’d be our Don; he was always trying to think of new and seemingly radical ways of equalising the playing field for people with disabilities. (such as giving us full control over our lives in the form of Direct Payments – I know, outlandish, right?!)

Martin had an impairment called Spinal Muscular Atrophy, and spent his childhood in St. Mary’s Hospital in Baldoyle, where he developed a strong stance against the institutionalisation of people with disabilities.  He became a youth leader and coach there, and became a strong advocate for people with disabilities. When he went travelling in the US, he saw the disability movement in action first-hand and on his return to Ireland, immediately set about bringing Personal Assistance here. This began with ‘Operation Get Out,’ a programme designed to move people who had been institutionalised back out into the community and culminated in the development of Ireland’s first Center for Independent Living in Dublin.  There are now around 25 CILs across Ireland today, thanks to Martin.

Martin dedicated his entire life to trying to achieve equality for people with disabilities, but the first I ever heard of him was in 2005, when I was looking for a summer job in Dublin. My Personal Assistant arranged for me to have a job interview with him in Chief O’Neill’s in Smithfield. She didn’t know much about him, so I’d pictured a stern-looking man in a suit, wielding a pen and ticking boxes as I spoke. As it turned out, I didn’t do a lot of talking during that interview, but I’ll never forget it. Martin’s kind, soft features put me at ease as he spoke passionately about the need for Leaders (people with disabilities) to take full control of their own lives and to have a platform from where they could voice their concern about their Personal Assistant Services. This platform was called a Leader Forum and it was my job to help him put it together. This experience later enabled me to help establish forums in Laois and Offaly. I could see that this was a man with a rare combination of passion, vision, and stubbornness. He would not rest until he realised his goals.

That September, Martin would lead the biannual Strasbourg Freedom Drive for the second time, and although I couldn’t go, it awakened in me an awareness that issues facing people with disabilities in Ireland are commonplace across Europe. During this Freedom Drive, people with disabilities across Europe convened at the European Parliament with key demands, which invariably included the deinstitutionalisation of people with disabilities and the recognition of the Personal Assistant Service as a basic human right. The slogan for the event was ‘Nothing About Us Without Us.’

I started working with Offaly Centre for Independent Living Ltd in 2008, and thanks to Martin, I had a clear idea of what I wanted to achieve. However, I soon discovered that it wasn’t as easy to motivate others to fight for equal rights. During the recession (that we’ve apparently come out of), a time when ‘cutbacks’ instilled more fear in people with disabilities than any other word, Martin was actively protesting against these cutbacks. He and other activists took the drastic measure of camping outside Leinster House, and their perseverance was worth it when the cuts were reversed.  Just last year, in September 2015, he organised another three day protest outside the Dail where he expressed his disappointment to our Taoiseach, Enda Kenny, on hearing that investments were going to be made into residential institutions.

Martin is a celebrity, and we all loved to see him coming to Offaly. In 2010 he agreed to be filmed as part of a promotional DVD Paddy Slattery and myself made for Offaly CIL Ltd, called ‘My Life with Me in It,’ in which he explained how he established the Independent Living Movement and how he helped Michael Nestor establish Offaly CIL. In October 2011, when prominent US advocate Judy Heumann came to visit us in Offaly, Martin came to meet her, noting the many similarities in the struggles for independent living for people in the US and in Ireland. That day, he introduced me to Judy as a hard-working Trinity Graduate who was passionate about forwarding the Independent Living Movement. It was the highlight of my seven years’ service with Offaly CIL. Despite the fact Martin met so many people every day, he had still taken the time to get to know me as a person and believe in me as a person. I’m crying just remembering that moment!

And in spite of his many achievements, Martin always strove to achieve more. The Offaly Leader Forum (now the Laois/Offaly Leader Forum) organised a celebratory event in September 2015 to mark twenty years of Independent Living in Offaly. While other speakers were maudlin about the past, Martin focused instead on the future, warning us that must never become complacent in our pursuit of equality. Before his passing, he was actively campaigning for the introduction of Direct Payments, insisting that we must believe in our ability to take control of our lives and to achieve our potential in everything we do.

Nobody could accuse Martin of not achieving his potential. And now that he has passed from this world, we have to ensure that his legacy lives on, never for a moment doubting that we deserve anything less than to live with dignity, respect and choice in our own communities.

Codladh go sámh, a chara. You will be missed, but never forgotten. Thanks for everything xx

International Cerebral Palsy Day – 5th October

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It came to my attention earlier, as I was devising a work plan from now until Christmas, that the third International Cerebral Palsy Day will be marked tomorrow on 5th October. And as a CP’er myself, I felt compelled to write a blog about it. (Also, I haven’t blogged in a reeeeeeeeeeally long time. Sorry about that. Writing a novel isn’t as easy as I thought it would be and sucks up a lot of my time these days).

For the uninitiated, Cerebral Palsy is a disability which is caused by damage to the brain before, during or after birth. The condition itself can range from mild to severe, depending on the damage sustained and the part of the brain affected. Cerebral Palsy is a non-progressive impairment and cannot be cured, although medication and speech- and physiotherapy can enable the person to have a better quality of life (apparently, when they remember to do it).

I’m not going to lie to you, though – me being the politically correct little shit that I am, there’s something about an International Awareness Day for CP that makes me uncomfortable. It could be partly related to my reluctance to admit that CP does bring with it annoying limitations such as fatigue, muscle pain and blah blah blah, when I would rather be perceived as being invincible, capable of absolutely everything. It also has something to do with the fact that for the last seven years, I’ve been programmed to believe that disability is constructed by an inaccessible and exclusive society, not one’s individual impairments. So, in other words, your impairment doesn’t matter, but your motivation to challenge injustice does. That’s something I firmly believe.

Another myth I need to shatter is that disability is something that can be overcome. No, it bloody well can’t, okay? I’m not going to wake up in the morning, or go on a pilgrimage to Lourdes and be miraculously cured, and you know why? Cerebral Palsy is not a disease, it’s not contagious. What needs to be ‘overcome’ is society’s obsession with cures, with an almost unnatural desire to eradicate disability/impairment through medical science and technology. We seem to forget that Hitler also had ideas on how to create a disability –free society, which resulted in the ‘mercy killing’ of an estimated 700,000 people with disabilities.

On a positive note, however, some things have improved slightly for people with Cerebral Palsy. If you’ve ever read Christy Brown’s My Left Foot you’ll note how the language the author uses is very much of a certain era; Brown indiscriminately uses words such as ‘handicap’ and ‘cripple’ to define himself, words which are deemed offensive nowadays. Also, during Brown’s darker moments, it is easy to see how his thinking is directly influenced by a society that sees him as problematic, different, and how to a certain extent he’s internalised the negativity of those around him. Nowadays, children with Cerebral Palsy are well educated, are often integrated into mainstream education, and some of us even get the chance to bullshit our way through university (see ‘Why Getting An English Degree Was So Terribly Important’). We have families of our own, we drive, we hold down jobs (albeit with difficulty at times; it can take a person who has CP three to five times the amount of energy to do a simple task that a non-CPer does).

Having said that, I hate the slogan ‘I may have Cerebral Palsy, but it doesn’t define me,’ because that’s balderdash. Of course it does. It makes every achievement more special, be that getting a Masters Degree or buttoning your blouse by yourself. The reality is that many of us CPers work harder than most to gain the same results as someone without CP. My Leaving Cert nearly killed me, and that’s  no exaggeration. I spent two years in constant pain after having my daughter from lifting her and getting up and down off the floor. And if time was wound back, I’d do the same again, but there’s no denying that the extra demands I put on my body took its toll. Furthermore, if I’m honest with myself, that’s why I stepped back from a traditional job in favour of writing: at least this way, I can work to my own schedule and rest when I need to. (Not to say that I don’t intend on going back to work, but I’d be lying if I said I didn’t enjoy the freedom to work as I do now. Ironically, though, I’m working more than fifteen hours a week on my writing now, and I’m not as tired as I used to be. Funny that).

Oh, and I’m also obliged to tell you that as International CP Day is a ‘thing’ now, presents are customary. Don’t worry, it needn’t be anything major. Twenty euro in a card or a box of Milk Tray will do just fine.

 

To Alison on your first day at school

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Alison at eighteen months

 

To my beautiful daughter, Alison,

 

It’s ten past nine on Monday, 29 August 2016 and you have been in bed just over an hour. Since then, I’ve spent the time running around like the proverbial blue-arsed fly trying to make sure I’ve everything ready for tomorrow morning. Another big milestone in your life.

Your very first day of primary school.

I marvel at myself for how I can sit here and type that sentence so dry-eyed and straight faced, my thoughts still coherent enough to write this blog proclaiming my undying and never-ending love for you. I should be in a heap in a corner somewhere, sifting through your baby photos, pining for the years I will never have again with you.

But I’m not (Don’t worry though, mummy isn’t some sort of insensitive bitch, promise honey). Not yet, anyway. As nervous as I am, I’m also really excited about it

I don’t know if you know it, but there was a time when I didn’t think I was good enough for you. There was a time when I believed you would be happier without me, that I wasn’t a good parent. And then you started to walk, to talk, to count, to recognise your colours and shapes, to sing little songs over and over again. Things that I taught you. You kept mummy going in the darkest days; you were the light, your butterfly kisses the fuel of my strength.

You are so beautiful, inside and out; don’t let anyone tell you outside. You are so kind, gentle and loving that any one of your classmates would be lucky to have you as a friend. You’re also a bit of a messer, so I’m anticipating a lot of notes home over the next few years. I think auntie Alex is in there somewhere!

 

Alison, as you may know, mummy spends every night in her office, trying to  write the best novel ever written (okay, a little pretentious, but who’s judging? Let me enjoy my delusions in peace). Mummy often gets frustrated, thinking she is going about things the wrong way, and sometimes wonders if she should’ve stayed at her job. But then, Alison, I look at you – the stunning, clever girl that you are – and I know that I will never regret the extra time I had with you. Sure, some days were crap (especially when it was raining or mummy was PMSing), and others were fabulous (when the sun shone), but they were memories made together that I will eternally treasure. Thank you so much.

Honey, when the time comes I want you to follow your dreams, no matter how far-fetched they seem. I want you to be always happy in who you are and not to be afraid to be yourself, no matter what. Fitting in is overrated – take it from someone who never did (and never really wanted to, either). Don’t ever be afraid to stand up for what you believe in.

My daughter, my little girl, my only one – have a fab time at primary school. You’re going to Scoil Mhuire, which used to be my favourite place in the world. It was there I became who I am and developed a sense of myself  as a person. School taught me that I would always have to fight to be recognised as equal, but that the fight would invariably be worth it. School taught me that in order to be trusted and respected that I would have to respect others. Most of all, the fabulous teachers there encouraged me to write which has been my sole ambition since I was a small girl like you.

And as I say to you every night, thank you for being my daughter. I am so lucky to have you. I love you princess. Just please-stop growing up, okay? If for no other reason, just so that you will always fit in the hollow below my ribcage xxxxxxWIN_20151128_192444

Four Years Old (poem)

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for Alison

 

A doctor’s visit can be healing,
But not as instantaneously as mummy’s magic fairy dust.
The beating of a butterfly’s wings entertains you for hours.

You don’t need any help, and yet you need me,
Your head slots so perfectly into the hollow beneath my ribcage.
Your soft hands always so busy, so dirty
Creative delicious mud pies or digging for buried treasure.

Your lips purse together into invisibility when you’re looking for something,
Hands behind your back, swaying to and fro, grabbing at my heartstrings.

Every night, you sit, pen in hand, practicing your letters,
You tell me that you want to learn. Well, you are also my teacher,
As I am yours.

You teach me that time is sand slipping through my fingers,
You teach me that what I am is all you want, that perfection in your eyes, is me.
You teach me that sometimes you need to make time to pick dandelions out of the grass.

We both know that you will never be four years old again,
And that one day you will tower over me with a mischievous smile,
But still I will hold you and rock you like a baby,
My daughter, my Alison, my world and my life.

The Elusive Word – Poem

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Words? words? Where are you? I can see
Your shadows lurking behind that great big wall in front of me,
Whispering and giggling like schoolgirls in the yard,
Can’t we just be friends? Must life be so hard?

Words, oh words? Come out, come out to play,
I’ve only a short time frame, I’ve not got all friggin’ day,
So let us all cooperate and jot down a line or two,
Why can’t you be as kind to me as I have been to you?

WORDS? Come on now, I won’t chide you again,
You better come quick smart when this paper meets my pen,
You were so excited when my bum cheeks hit the loo,
And now there’s only silence – WHERE the **** are you?

Fine, then. Be like that. No, really – I don’t care!
Stay away forever! Only come back if you dare!
It’s not as if I hope to depend on you for a living,
And that when you come skulking back, I’ll always be forgiving.

Words, I know you’re in there, but please, do not leave;
Perhaps a good night’s sleep will grant me some reprieve?
I know we fight and argue, we don’t always agree,
But we work so well together, don’t you think, you and me?

Words, just come back – I want us to be friends,
We can talk it over, I want to make amends.
Please don’t make me write a shitty poem just for the sake of writing,
Otherwise people will likely guess that we’ve been fighting.

Oh crap. Oh well, tomorrow’s another day,
Let’s hope by then my dear old muse can think of things to say.

The Secret Agony of Postnatal Depression

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(Me and my little princess)

Sometimes the hardest thing about being a writer is writing about real feelings, about your reality. Once the words are out there, you’re opening yourself up to merciless scrutiny and possible criticism. But I’ve decided that in order to be free of the most horrible experience of my life, I have to write about it and share it with you. And I’m so happy that I’m finally in a good enough place to do it.

(written Wednesday 22 June 2016)

It is one o’clock on a Wednesday afternoon. All is quiet, now. We’ve spent the whole morning talking to a lovely woman who is interested in our story of how we, two parents with various degrees of Cerebral Palsy, found the whole experience of having Alison and whether we would have any advice for the so-called medical professionals if they ever come across a case like ours again.

We are not a ‘case’, of course. We are people. Real people with real feelings. Talking about how we were doubted when we had Alison and when we brought her home first is always draining. As a person who loves to bottle things up and have that bottle explode at the most inopportune times, talking openly and honestly about what is going on in my head is something I hate to do.

So why now? Well, maybe it’s because no matter how hard I try to deny it, the fact that I had postnatal depression will always be part of my identity. I will never forget how I was made to be so afraid that I had to go through it alone, even though I know that some friends tried to help me. They couldn’t of course. I had to help myself.

I was nine weeks pregnant when I self-referred to a physiotherapist and an occupational therapist. I wanted to be the best for my baby, I wanted to improve. I wanted to show people that I was capable. Deep down, I wasn’t sure if I would be. The last time I’d cared for a baby was when my little sister Alex, six years younger than me, was born. Dressing and feeding a doll wasn’t going to be the same thing, I knew that.

Anxiety lingered where excitement should’ve resided. Our Public Health Nurse started visiting when I was twelve weeks pregnant, asking questions that I didn’t know the answer to. How are you going to feed the baby? Change it? Carry it? (Apparently my plan to wheel the child around the house in a buggy was inappropriate; a sling was more suitable. How was I going to get the baby in and out of a sling?) It didn’t really matter – they had come up with a solution, they knew best. Sure what did I know? I wasn’t a medical expert, like they were.

But if they were medical experts, then I was treated like a medical marvel. We’ve never come across this sort of situation, I was told countless times. What did they mean, this ‘sort of situation?’ Surely I was just a normal woman, having a baby? I was told that I’d have to be under general anaesthetic to be sectioned, and it was only the week before the section when we discussed our concerns with the anaesthetist that a spinal was considered. Then there was the apparent issue of me being  left alone with the baby. I spent months trying to illustrate how, if I got help with basic tasks such as bottle making, washing and cooking, being alone would not be a big deal. I later heard about how everybody was apprehensive, watching me with bated breath, expecting me to fail.

Alison Mary Fitzgerald was born on the 9th February 2012 at 11.52am, weighing a sizeable 8lbs 4oz. She was, and remains, the most beautiful person I’d ever met. As I held her in my arms I was blown away by her huge blue eyes, her physical strength and her flawless, unblemished skin. Immediately after the birth the lactation consultant showed me how to breastfeed. I hadn’t really considered breastfeeding, nor had I any interest in it, but Alison took to it easily and I watched her ‘help herself’ it occurred to me that if I could do it, then I would always be useful. Even with my horrible, mangled body I would still be useful.  Even if I couldn’t do anything else for her, I could do this. And if I  was her main source of food, then no-one could take her away from me.

Warped thinking, yes, I know. But I wasn’t thinking straight at this stage anyway.

I was a fog of hormones, crying from hormones and  tiredness. But finally, everything was in place. We became claustrophobic in that small hospital room, the three of us, and by Monday, all I wanted to do was go home. There was no medical reason why this couldn’t happen. John Paul was staying with a friend and that morning, it was just me and Alison in the hospital room. I looked into the little cot and sang ‘Baby, now that I’ve found you’ to her, studying her little hands, her thick head of hair. I promised her there and then that I’d always do my best by her, that I’d always love her. just as I was doing this the anaesthesist came in, grinning.

‘Do you remember calling me a legend last Thursday?’ he asked. ‘I recorded it in case you don’t!’ He checked my stitches, which were healing  nicely. ‘So are you off today? There’s no reason why you can’t. You’re recovering well.’ My heart soared. The ward manager agreed.

‘You’re doing really well,’ she said, ‘and we need your bed. What time is your husband coming in?’

‘Ah, soon,’ I said, packing my belongings. ‘Can’t wait to go home!’ But I was nervous too. I’d never handled a newborn baby before, and here I was, her primary caregiver, and like so many first-time mums I didn’t have a clue what I was doing.

The trouble was that I wasn’t like other first time mums.

I was just after feeding Ali when the head midwife came in. ‘I’m going home today, aren’t I?’ I said excitedly, gesturing at the half –packed suitcases on my bed. The midwife smiled, her lips pursed and shook her head.

‘Not today,’ she said. ‘You see, we have… concerns that you might be a danger to your baby, that you might drop or hurt her. What we’ll have to do is ring your social worker, your public health nurse and the Centre for Independent Living again and just verify what supports you’ll be getting, see if they think you’re ready to go home.’

‘But I’ve already done all that,’ I cried, my words an indecipherable screech. ‘Everything’s organised. I spent my whole pregnancy getting everything ready. How can you say we’re not ready? I can’t believe this is happening…’

The midwife shook her head. ‘I can’t understand what you are saying,’ she said. ‘Can you take out your phone and text out what you’re saying, like we agreed last week?’

Tears fell out of my eyes as I looked at the perfect sleeping baby beside me. I could hurt you, I thought to myself. I shook my head dismissively and instead rang John Paul, not letting Alison out of my sight for a second.

‘You have to take her,’ I sobbed down the phone. ‘There’s no point. They won’t let me take her home. You take her, you look after her. I’m obviously the problem, so you take her.’

A startled and breathless John Paul burst into the hospital room fifteen minutes later. ‘All right?’ he said casually, looking at the nurse. ‘Sarah said that you won’t let us home with Alison…’

‘Oh no, that’s not what we said at all,’ the midwife gushed. ‘We merely wanted to make sure that you two would be fully supported when you got home. So the Public Health Nurse will be out to ye every morning…’ I waited for John  Paul to protest angrily, but he remained calm. ‘And she’ll be a great help, no doubt. We’ve also ordered Sarah a cloth sling which she can use to carry Alison in her wheelchair. It’s sixty euro, so…’

‘I’ll get that,’ John Paul said confidently, although I knew by his reaction  he’d no idea where it’d come from. ‘And all going well, we’re going home tomorrow?’

‘Of course,’ the midwife said, although I felt like a royal idiot at this stage.

Getting home, away from the maternity hospital, felt surreal. We arrived at our house where my P.A. had decorated the house with ‘It’s a girl’ signs. Our family was waiting inside, armed with presents for me and Alison. There was even lasagne, and cake from friends. It was lovely. But I still felt like crap, as if I’d escaped from prison and that at any minute the midwife would come and try to take me back.

And so I began the journey of motherhood constantly feeling like an imposter. As those early days wore on, I began to feel tired. The physical effort of breastfeeding took its toll, but I persevered nonetheless, determined to do it. It took me forty-five minutes to do a nappy change and outfit change, and the fact that Alison had reflux and spewed during each nappy change didn’t make the process any faster.

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My aunt informed me that now that Ali was born, I would always chart life events through the life of my child.

Alison was eight weeks old when I started to feel odd. I wouldn’t say miserable, and I didn’t think I was depressed. But I definitely didn’t feel like myself. I put it down to exhaustion, physical and emotional, as well as recovering from, as my aunt put it, major surgery.

One night, when John Paul was at work, I sat looking at  Alison in her buggy. She was crying frantically and I was bent over her, ready to pick her up. Suddenly I felt light-headed and the room started spinning. All I could see was Alison’s head smashing against the floor, blood splattering everywhere. They were right, I thought with trepidation, I can’t do this. I’m going to hurt her. I phoned my friend, and when she arrived I was holding Alison in my arms, shaking with the relief that she was okay, and that I hadn’t hurt her.

But one day I will, I thought, and they will take her off me for sure. It’s only a matter of time.

I say ‘one night,’ but in truth, there were many, many nights like this. And if it weren’t for this friend, I don’t know if I’d be writing this blog right now. She saved me from myself more times than I can count.

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As part of my bail conditions, the Public Health Nurse came nearly every day, for nearly six months. We would try to look together, calm, pretend to know what we were doing. However, Alison had severe reflux which gave the Public Health Nurse the perfect excuse to drop by, sometimes twice a day, often unexpectedly, to weigh her. The house could be a tip. I could be wrapped in my purple and white bathrobe, curdled milk encrusted in my hair. To this day I firmly believe that Ali picked up on my nervousness, which in turn exacerbated her reflux to the point where she was throwing up whole feeds. She also had colic, but that was nothing compared to the pressure I felt to show people that I was able, capable.

‘Do you think it’s a cow’s milk allergy?’ I asked one day, as my heart ripped in two watching Ali spew another feed over yet another newly changed outfit. The Public Health Nurse smiled and waved her hand dismissively.

‘I doubt it,’ she said. ‘Do you know how rare that is?’

By Friday of that week, I’d had enough of this shit and brought Ali to the doctor, demanding a letter for the A&E in Mullingar, that I wasn’t going to be fobbed off any longer. It was the June Bank Holiday of 2012 and the hottest weekend of the year. We spent it in Mullingar hospital where the doctor finally prescribed Ali Nutramigen, a soya-based formula. I felt like kissing his feet in gratitude. Between the Saturday and the Monday Ali gained four hundred grammes and the heart-wrenching colic dissipated instantly. The colour came back to her face  and she became a happy baby, full of chat and smiles.

‘You see?’ my husband said as we came home from the hospital. ‘You are a good mother. You know exactly what you’re doing.’

I closed my eyes tightly and desperately wished it were true.

***********************************************************************

I went back to work in August 2012, for fifteen hours a week. Fifteen hours a week filled with anxiety, wondering how she was. Fifteen hours a week that I had to hand her over to someone else. Some days I would look forward to the break, until Alison left the office with the childminder. I knew I couldn’t have it both ways, but it was still so hard. It’s something I still struggle with, but I suppose every mother does, to some degree.

It was around this time that a horrible, mean voice moved into my headspace, and I was feeling too low and vulnerable to tell it to fuck off. Whoever this voice was, he/she/it was intent on destroying me. It was the voice that told me that I was going to drop Alison whenever I picked her up. The same voice told me that Alison was not safe in my care, that she would resent me as she got older because I wasn’t a normal mum. If I spilled something or knocked something over, the voice would never fail to criticise.

Alison turned one on 9th February 2013, and I’ve never felt relief like it before or since. Relief that I hadn’t caused her any serious harm or injury. Relief that she was home with us, celebrating her birthday in the company of friends and family. Relief that the first year was over. But I also felt anger. Angry that I had lost so much enjoyment with her because I was constantly worried about what others thought of me and my parenting skills. Angry that I would never be good enough for this little girl, no matter how hard I tried.

As Ali bent over her birthday cake and grabbed the flame, burning her little hand, I burst into floods of tears in front of my friends and family.

‘Don’t worry,’ my dad said, hugging me tightly. ‘Her hand is fine. She didn’t burn it too badly.’ I looked up at him and smiled, relieved that he didn’t know the real reason for my tears. Ali hadn’t been afraid to grasp that candle; she’d been strong and fearless. I’d felt that way too when I was pregnant. Now, all I felt was constantly afraid and so, so useless.

And my biggest fear was that somebody would guess how I was feeling, and threaten to take my little girl away from me. So I stayed silent, plastered on a smile and threw myself into the monotony of work and my daily routine.

***********************************************************************

I started to have thoughts of suicide, as they say, when Ali was eighteen months.

I’d no intentions of going through with anything, but I had it all carefully plotted out in my head, just as a back-up plan. Knowing it was there made me feel safe, happy even. (Don’t worry, there is no backup plan now. If there was there would be no way that I would even mention it on a blog).

John Paul and I would have a row, and I would storm out of the house, vowing never to come back. Sometimes I would take pills with me. Sometimes I would storm out and walk around for hours. I would come back. John Paul would say that I needed help, but we would both agree that we could not live under the scrutiny of nurses and social workers again.

He was tired, as was I. tired, and alone. So, so alone.

***********************************************************************

We moved house in 2014, to a bigger house with a lovely garden and lots of storage. And, it seemed, mirrors everywhere. We had no mirrors in the last house we’d rented and I found it difficult to deal with seeing my inadequate self everywhere I looked.

It was a tough year. My nephew died at thirty-four weeks gestation, which really affected me, having had my own baby just two years beforehand. I was grateful that Ali’s birth had been so straightforward, but also felt guilty because Kaleb’s should have been too.

Ali started crèche, which meant she was sick every week with one thing or another. It was an exhausting, sleep-deprived time. John Paul and I would stay up with Ali at night, then head into work the next day, frustrated when we weren’t able to function properly. And the voices spoke louder than ever, telling me I was useless, inadequate, nothing but a waste of space. I was constantly tired to the point where I myself was sick all the time.

One day I went to the doctor’s with swollen glands. I had had a tummy bug the week before, which had wiped me out completely. I sat in her surgery, answering the routine questions.

‘I can’t go on like this,’ I said. ‘I’m sick nearly every week, and I’m constantly tired.  I’m taking my iron. What the hell is wrong with me?’

‘That’s what having a baby does to you, I’m afraid,’ the doctor smiled. ‘Unless – well, how are you feeling in yourself?’

I stiffened. ‘I feel grand, great. Why?’

‘Sometimes physical symptoms can point to an underlying emotional problem,’ she said. ‘Has anything particularly stressful happened over the last while?’

‘Well, we moved house, and my nephew died this year,’ I explained. The doctor nodded.

‘That’s probably what’s causing it,’ she said. ‘Just try and take it easy.’

As I left the surgery, I thought of how one of my college friends had recently sought help for postnatal depression and how she had bravely posted about the whole experience on Facebook. And I remember reading it and thinking oh, if only I could be so brave. So strong. So honest with others, and with myself.

***********************************************************************

By July 2014, I was exhausted. I was ringing in sick at least once a week, and producing no work whatsoever in the office. All I could do was stare mindlessly at the screen, scrolling through random Independent Living sites, taking nothing in.

And I hated myself for this lack of productivity. (You’re nothing but a waste of space)

I would come home in the evenings, and spend time with my lovely daughter, playing on the floor with her, silent tears running down my face from the pains that radiated from every fibre of my body. (You will never be good enough for her)

I wanted my house to be perfect, my daughter to be perfect. But how could that be when I wasn’t perfect? When I looked in the mirror, all that I saw was a deformed nobody, an imposter waiting to be exposed. I was a terrible wife and mother, and I was convinced that the two people I loved more than anything in the world deserved better.

‘Where do you think you’re going?’ my husband asked, his face shocked. It was half one in the morning, at the end of July and I had been in bed. Now I was awake, looking at him from the doorframe of the sitting room, fully dressed under my bathrobe. And all I saw was mess. In reality, it was a couple of dirty dishes, but it might as well have been thousands of dirty dishes; I hadn’t the energy to deal with them. If only someone had given me the memo that a couple of dishes wouldn’t signal the end of the world, but there and then, I couldn’t deal with it.

I couldn’t deal with anything.

‘I’m off,’ I screamed, jumping into my wheelchair. ‘And you can go and fuck yourself for all I care. I won’t be back. I mean it this time.’ John Paul tried to stop me but I tore out past him and headed out into the darkness. I didn’t know where to go so I wandered around aimlessly for hours, watching the cloudy sky gradually become brighter. The grey haze enveloped me as I sat beside the canal, and cried, and cried and cried.

Later that morning, I went into work, sitting mindlessly in front of my laptop. After about an hour two of my colleagues collared me.

‘You look dreadful,’ said one, surveying my dark circles. ‘Something has to give. You can’t go on like this.’

‘You need a break,’ agreed the other. ‘Before you crack up.’

My initial reaction was oh shit, I’m going to lose my job, but they were right. I couldn’t go on like that. We agreed that two months off work should help me to feel like my normal self.

Within two weeks of being off work, I felt more like myself again. which was odd, because I thought that I would hate it. I absolutely loved being home with Alison, and getting to know her better.

And then, I started writing again.

It began as a few words here and there in an empty Word document. As the weeks wore on, I began to write out the thoughts in my head, and they didn’t look as stupid as they sounded in my mind. I wrote exactly how I felt, staring at the words until I smiled. This was how I felt. And as I explained in a previous blog, I began to understand why I’d felt so shit; so many things had happened that I’d repressed, including the death of my mother and the way I’d been treated after Ali was born. I started to blog about them and it made me feel happy and peaceful in a way I hadn’t felt in years.

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I didn’t write this very long preamble because I want sympathy. I wrote it so that I can say that that horrible part of my life is over. I’ve never been happier, although loving myself is going to take a bit longer. I still have bad days, but everyone has; none of us are perfect. The main reason I’ve written this, however, is because it breaks my heart to think that there might be other women out there, suffering as I did, afraid as I was to speak out and ask for help. I know it’s easy to say this now, but there is no shame in having PND. It’s an illness, a horrible, horrible illness, and nobody should have to wrestle with it alone. And if you’re reading this and can relate to any of the above,  please ask for help. I’ve heard that there are so many great counselling services out there and I’ve read and heard so many success stories. Don’t hold off – just do it. You are worth so much to so many people.

Most of all, you owe it to yourself. Because despite what those head demons are constantly trying to tell you, you’re actually pretty damn fantastic. You really are.