Tuesday Thoughts: Weathering the Storm

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To my followers in Ireland and the UK, I hope that things have settled back to normality after the devastation of Storm Eowyn. Apparently, it was one of the worst storms that we’ve seen in our lifetime, and it’s predicted that these so-called “weather events” will become more prevalent in the future. As an island country, there’s only so much we can do. What are those who are living beside those idyllic sea views supposed to do, surround themselves in sandbags and hope for the best?

I must be honest: the only other storm I ever took seriously was Storm Ophelia in 2017. Others didn’t take it quite as seriously, alas; I remember looking outside to see a couple walking past the house, as if it were merely a brisk winter’s morning. Moments later, a leaning tree, firmly rooted in the patch of grass outside our front gate,  blew to the ground, the roots exposed, reminiscent of the uncovered spokes of a bicycle. All things considered, we fared well during that storm; no-one got hurt, our property (including the rabbit hutches outside) remained intact, and we never lost power. Surely if we could survive Ophelia, we could survive anything, right?

As the weather warnings intensified, I contacted my friend Orla who came the night before and helped us to heap everything into the shed. We charged up the portable chargers “just in case”, and I prepared food for the next day. Being honest, part of me thought the whole thing was a pointless exercise. When I went to bed that night, the wind was gathering pace, banging around the windows and walls. Still, I slept for an hour or two, but when I woke, the room was clothed in darkness. Even though I’m a forty-year-old woman, I feel no shame in admitting that I’m afraid of the dark. I reached for my phone and noticed that the battery icon was white, not green, which meant that it was no longer charging. Shit. We’ve lost power.

There was nothing I could do at five o’clock in the morning, so I waited until the sun rose to get out of bed. Everything I would normally do in the morning was now scuppered by this lack of electricity. I’ll just make a coffee…no, wait… I’ll hoover… oh, I can’t…. and so on. The dogs were whinging at me, clearly unimpressed that they weren’t getting their morning walk. However, I think the situation became clear whenever I opened the back door and the two of them nearly blew away on their quest for their morning constitutional! After that, they were happy to bunk down in their crate and wait for the chaos to pass. And it occurred to me that was all I could do, too.

Orla texted me, concerned at our lack of power. “Is there anything I can do?” she asked, and unfortunately at that stage, there wasn’t. But we were extremely lucky: at 2pm, without any fanfare, the power returned. We all hastily showered, stuck our phones onto chargers and prepped food in case we lost it again. Alas, I know that not everyone was as lucky, and we offered assistance to anyone we could think of who might have needed it. Four friends stayed with us until their power came back, and it was an honour to help. After all, it’s a horrible feeling to be stuck in the dark, feeling like there is no-one to turn to.

Very few of us, except the cold-hearted (and I don’t know anyone who falls into that category), would refuse help to anyone who needed it. The trouble is, we don’t always know, or can’t always tell, when someone needs help. And afterwards, we always feel terrible that someone has endured suffering alone, and we admonish them: “Why didn’t you tell me? You know I would’ve been there for you.” Of course, logically, we know this – but sometimes, when you are caught in the eye of your own personal storm, it’s difficult to explain the devastating impact of the damaging gusts raging around your mind. 

You can’t catch a breath. You can’t even think straight because your brain has automatically switched to survival mode. All you can do is grab onto something and hope you don’t fly away. You learn to become numb, because you can’t handle the guilt that goes hand-in-hand with feeling your emotions. For me, I don’t like letting people down. No feels like an impossible sentence to utter. So, rather than setting boundaries, I hide and pull away. 

And boy, did I hide. I left a beloved writer’s group (but rejoined today – hurrah!). I didn’t make contact with anyone, choosing instead to watch reruns on Netflix (up until last year, Only Fools and Horses was the only television programme I watched, or binged). Each day was a long struggle, from the time I woke to the time my head caressed the pillow again. And it didn’t have to be. I could have called someone, asked to be rescued from the storm. But I was ashamed. I was haggard and browbeaten, my confidence having flown away. Eventually, it dawned on me that sitting around waiting for the confidence to return was not going to make it happen.

I’m still in the baby steps phase, but I only made two New Year’s Resolution this year: one is to write as much as possible, even if I think it’s shit, and the other is to do everything in my control to ensure that, in low moods or dark days, I have some kind of emotional powerbank charged at all times, ready to use in emergency situations. Last year was tough. I lost four friends within a twelve-month period whom I think about every day, and the fact that human life is fragile has not escaped me. Of course, toxic positivity is just as dangerous as negativity, but I need to ringfence my emotional health, protect it from the storms of everyday life.

That said, in writing this I do not intend to trivialise the damage caused by Storm Eowyn two weeks ago. To those of you still waiting for power or water to return, facing repairs to your properties or cars, or have lost food due to lack of electricity, I’m thinking of you. The government needs to be prepared. We can – must — do better in the future. We must be more prepared for storms yet to come.

Tuesday Thoughts: A I A I NO!!

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I think my eyes have gone square from staring at the screen all day. After a lazy Christmas, I started back to work on an editing job I’m doing for one of my clients. Editing is a slow job, and frankly, nowhere as exciting as writing. It’s handy, though, insofar as I can fit it around other things, like pretending to write a novel and housework. I like to take my time, reading sentences aloud to make sure that they sound right, double checking grammar and punctuation, and sometimes I even learn something new if I need to verify something in a dictionary or thesaurus.

Working freelance means that I can work when I please. It suits me, especially now that chronic pain has made its way into my life. However, the reality may be that my editing days are numbered, thanks to AI. Who’s going to pay me to do something that an algorithm could do for half the price, if not for free?

It will come as no surprise to you, dear reader, that I consider the written word to be important. I studied English literature for four years, reading masterpieces that came from the quills of Chaucer, Shakespeare, Milton, progressing to Austen, Bronte and Dickens, then edging ever closer to the modern day with Elizabeth Bowen, George Orwell, Helen Fielding. I learned that the longer nineteenth century novels were serialised, due to the cost of printing. As we moved into the mid-twentieth century, novels became shorter (three to four hundred pages). Becoming a published author was a feat that was increasingly slipping out of reach.

However, thanks to the invention and widespread provision of the internet, it seems that any auld gobshite can write and publish whatever, whenever they like. It doesn’t even have to be “good” or to a publishable standard whatsoever (and many instalments of this blog should be treated as cases-in-point). All considered, it’s probably the worst time to consider a career in writing. The market is saturated. We’re told that publishers have gigantic piles of unread masterpieces in their offices, loitering around the shredder. Writers really have to love what we do, otherwise many of us wouldn’t even get up out of bed in the morning.

And if that wasn’t enough, we’re now competing with AI as well. The irony shouldn’t escape us that we humans were the ones to invent and hone AI, and now we may well be surrendering our jobs to them. AI has been around for some time; it’s not a new phenomenon. When I was studying in Maynooth in 2019, some of my classmates joked that they were going to put their essay ideas into some sort of essay generator and see what came out. (They didn’t, thankfully!). Now, AI seems to be able to do it all – content writing, editing, even fiction writing. Which sort of makes sense, right? After all, there are basic formulae for certain types and genres of writing. In this respect, writing is like maths.

But writing is not like maths. The truth is, that even when a writer follows a pattern, for example, start, middle and end, he/she squeezes a little bit (or a lot) of his/her soul into the work. A little personality, a deeply hidden fear, a scar that never quite healed properly. For many, myself included, writing can feel like flashing at the world behind the safety of a screen. Often, it’s a cry for help, understanding and solidarity. Say what you like, but how can a preprogrammed algorithm have the same effect?

Think back to when you first started reading. I know I loved Enid Blyton’s “jolly goods” and her descriptions of the Famous Five’s midnight feast; I related to Roald Dahl’s Matilda at a time when I, too, felt misunderstood by the world around me. Dahl himself had experienced a troubled, violent childhood at the hands of his teachers, and no doubt he found writing to be therapeutic. Don’t dare tell me that a reader could connect with an algorithm in the same way.

And yet, many writers like me are fearful of the future. As it stands, many writers are seen as charlatans, daydreamers who sit around all day, hoping for good fortune to fall into our laps (or keyboards!) The only thing we can do is keep writing.

We all deserve the privilege of telling our own stories. And let me tell you, however crappy or unpolished my words may be, I’m certainly not in a hurry to give away that privilege.

Tuesday Thoughts: Last Day Promise

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If you are reading this, congratulations! You’ve made it to the end of another year! It might not seem like a huge achievement, but believe me, it is. This year alone, I have lost at least four wonderful friends and activists – Selina, Peter, Leigh and Emmet. One loss can be difficult to digest, but losing four people has been hard going, in fairness. At first, when Selina passed, I felt trapped in a state of disbelief and paralysis. How could someone be here one day, and gone the next? II rattled me into a haze, but the passing of Leigh shook me right out again.

Life is short. Shorter than we think. My little girl, with whom I once spent the days playing Sylvanian Families and doing arts and crafts, will officially be a teenager in six short weeks’ time. I officially am in the fifth decade of my life. It may seem cliche, but there’s something about turning forty that makes you stop and reevaluate a number of things. What’s important, and what’s just not worth the worry. I need to remember that worry is wasted energy, and that the need to feel in control is a form of anxiety (according to the motivational speaker, Mel Robbins). Covid should have taught us that we can’t control the external world, all we can control is our reaction to it.

You may have noticed that I’ve started blogging a lot more. The truth is, for every blog you read on this site, there are usually another two attempts in a Word Document somewhere, which never see the light of day because I don’t think it’s good enough. And while I think that a writer should indeed practice their craft in private, labouring away at the little parts and tweaking them to their liking, more experienced writers have taught me that if it’s perfection that I’m striving towards, it’s unlikely that I’ll ever publish anything. With this in mind, I hope to spend much of 2025 learning how to be comfortable with rejection. This means starting to send pieces into actual publications instead of hiding them away on my laptop. Even as I type this, the very thought terrifies me. I tell myself that I’m not *that* kind of writer, the type that deserves any kind of validation. If I keep going as I am, I will always be safe, but I will never make progress. (This realisation was not made on its own; it’s the advice of many established writers: Stephen Fry, Vanessa Fox-O’Loughlin, Dave Butler to name a few.)

I know that I should be doing a year plan , but since I’m only still recovering from a period of mental ill-health, I think the best approach right now is a daily or weekly one. My resolution is to be kinder on myself, not harder, as the hard approach fills me with shame and doesn’t really get me anywhere. I think 300 words a day is a reasonable aim, and anything after that is a bonus. I would also love to drum up more editing work from somewhere. As crazy as it sounds, the reason I enjoy it is because it’s a completely different approach to writing, and editing other people’s work while trying to retain their individuality has made me a better writer. It’s also led me to edit my own work more, and to produce tighter pieces (well, not today – this is a tad waffly, isn’t it?)

And I’d love to finally finish a full first draft of my novel. I still believe that Rachel’s story is worth telling. It’s the story of a woman who is struggling, her identity stretched between being some sort of supercrip and being someone in dire need of help. Someone who, like all of us, needs to stop listening to that negative inner voice and to confront her demons. It all sounds very serious, but actually she’s a feisty character and those who have met her seem to like her. Hopefully you all will get to meet her too, in the near future!

Here’s to 2025! Looking forward to seeing you there x

A Tribute to Emmet Grogan

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I honestly don’t know where to start when writing about this extraordinary gentleman. Part of me doesn’t want to write anything at all, preferring instead to stay in a bubble of soft denial, but experience tells me that this approach will not serve me.

The irreplaceable Emmet Grogan has left this world, and it hurts like hell contemplating a future without him.

I met Emmet when I was seven years old. We were both doing a “summer camp” in Clochan House. At that age. I had no concept of myself as being any way different, and I was suspicious of his wheelchair. What struck me about him when I met him first was his confidence. He knew that he deserved to participate in the world around him, a belief no doubt reinforced by his loving parents, Tommy and Mary. He loved showing off his piano skills, leading many a singsong when we stayed in Clochan House.

I remember the first proper conversation we had. I was ten years old and we were in the Harriers cycling around the track, me on my red tricycle, he on his handcycle. We started chatting about school and how we hated being told what we could and couldn’t do. From that evening, we always sidestepped the awkwardness, and a friendship developed that I too often took for granted.

Emmet became what I refer to as a “core friend”. He was among the first people I invited to my twenty-first, to our wedding, Ali’s christening and any other events we held. We didn’t speak every day, but he held such an important place in my and JP’s life.

We worked together for a year in Offaly CIL, and I was delighted to have a friend around to make the day go quicker. He designed the OCIL website and took great pride in his work. He was constantly asking for feedback, being eager to please and wanting to push himself professionally. He was a good laugh to work with, and I really missed him when he left.

As we grew older, I understood more about how pain affected him. Emmet had quite a severe form of Spina Bifida, and sometimes he was in so much pain, he couldn’t even speak. He’d had so many operations, and had been plagued by kidney infections for as long as I could remember. When I was sick, it was surmountable, but whenever Emm was sick, it really wiped him out. What struck me as we grew older together was how easily we could discuss these realities of our impairments. He never complained, but neither did he pretend his ailments didn’t exist; he wasn’t a supercrip, he was human. It was this humanity and authenticity that led me and so many others to gravitate towards him. But he wasn’t a misery guts either; he had a wicked sense of humour that was often unexpected. Understanding where he was coming from and trying to meet each other where we were at allowed us to share a friendship based on honesty, respect and love.

Emmet loved life. I slagged him many times over his love of going for coffees or a pint, either on his own or with friends. And why not? What he really loved (I hope) was catching up with friends. He also loved his annual family holiday to their mobile home in France every year, and usually came home either bronzed or as red as a tomato. 

Emmet loved his family, who meant everything to him, not only because of the assistance they offered, but because they truly encouraged him to be independent. They were his safe space, never stopping in their mission to ensure he had the highest possible quality of life. And I know how much he appreciated this. He was very much his own man, but his family always had his back. It’s very rare that such a balance is found when a family member has such a severe impairment. The line between empowerment and overprotection is a fine one, but his loving parents managed it perfectly. I know this because he only ever had good and positive things to say about them. And they had such a gorgeous relationship. Emmet was never a burden – he was a son, a brother, a cousin, an uncle. His family needed him just as much as he needed them.

I have cried so much in the last few days, yet I don’t think the reality has hit me. I’ve lost so many friends, but this is somebody who I never thought I’d have to contemplate living without. Rest easy Emmet. God knows you deserve it. X

Friday Freewrites: Back to School

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Alison is exhausted. Between the demands of secondary school and all her extracurricular activities (especially basketball), she is looking forward to having time to unwind and hang out with the many friends she’s made since the end of August. I am so proud of how enthusiastically she has embraced secondary school. She’s going to the Sacred Heart School in Tullamore, my own alma mater, and she wants to be involved in everything from badminton to book club.  It’s no mystery as to why I need to drag her out of bed every morning, typically with the cheesiest song I can find on Spotify playing on full blast on her Alexa. Yet, she hasn’t yet asked for a day off just because; she’s missed school because of a vomiting bug. She wants to be there. Mind you, she’s not buzzing about the homework but, as far as I can make out, she feels like an important part of the school community.

Alas, it took me a little longer to feel that way.

It’s developmentally normal for teenagers to question their parents’ decisions, and at thirteen, I could not work out why my parents would opt to send me to a two-storey Catholic School, when there was a modern, accessible school right next to it. I don’t remember being consulted, and so I already had reservations as I entered through the front door and ambled towards the Dining Hall. I had always attended mainstream education. Throughout primary school, I sat in the classroom with my peers, but truthfully, some of the teachers were softer on me than they should have been. No homework done? Aw, you were tired last night? Don’t worry your little head about it! When my mother found out, she was furious. She and my fourth class teacher joined forces to let me know that being lazy was going to get me nowhere. Honestly, I hated them both, but had they allowed me to drift, I would have had no choice but to drop out of secondary school. And let me tell you, I love them for it now. I shudder to think where I would be now, were it not for their persistence! (Probably sitting at home, pretending to be a writer of some sort. Oh no – wait…)

That said, I spent the first four months of secondary wondering if I was really built for a mainstream education. This was 1997, and Special Needs Assistants (SNAs) were not commonplace. I’d used an electric typewriter for eight years in primary school, but I’d left it behind; they’re heavy beasts, not easily transported, and they are loud! Whenever I typed, it sounded like a mini machine gun. I had an old computer at home, a Sirius – a basic beast with a green screen that had the most basic word processor you could ever imagine – but nothing at school. I remember sitting in class, being afraid to ask teachers for a copy of their notes and praying that I would be able to decipher my own scribbles whenever I got home. I was constantly in trouble for having no legible notes or being late for class. It was a frustrating experience, because I knew I was capable, but I had no way of proving it. That gangly thirteen-year-old could never have imagined applying to study English in Trinity College a short six years later.

The school seemed determined to single me out. At one stage, I wondered if I should wear a cone-shaped hat on my head, just to make sure everyone knew that there was a wobbly alien wandering the halls. Being the only person in a year with over a hundred preteen girls with a visible impairment felt scary. On one hand, I was proud of the effort that I was making to blend in, but the imposter syndrome was on overdrive. I remember that the principal at the time, the lovely Mrs McManamly, organised an occupational therapist to come and do a seating assessment, I was measured up for an orthopaedic chair. With my arms folded, I declared that they were wasting their time as I wasn’t going to use it, so that there was no point in getting one.

Oh no, Mrs Mc winked at me. We’re not just ordering one. We’re ordering one for every class.

Was she serious? Imagine the teasing I’d get while I sat on my specially purchased pink throne, one in every classroom! Anyway, it didn’t make good financial sense for the school. If they were prepared to do that, what would they be expecting from me in return, straight As? When was I going to have fun?

The first (and only, as I begged them not to purchase any more) pink orthopaedic chair came and stayed in Room 22 for six years, the room I used most. Even at that young age, I quickly recognised the difference in my pain levels. Around the same time, in January 1998, following an embarrassing meeting in the CRC with my mother and form teacher (who would ultimately turn out to be one of my favourites, but back then, I was still terrified of her!), I received a basic laptop for school and a Windows ’95 PC, with a special joystick, keyboard and HP Printer for home. I could take my work home on a disc (which, unlike the ones I used with the old Sirius at home, weren’t actually floppy). This was a game changer, not just academically; my classmates were intrigued by the mini laptop, and we started typing notes to each other under the guise of working on assignments. Occasionally, the teacher would cop on to what we were doing, with the embarrassing consequence of having to read out what we’d typed to the rest of the class. No punishment mattered, because we’d laugh about it on the way to the next class. That is how this would-be loner made friends in school.

By the time I was in second year, Dad’s fried/work colleague David had sourced a Windows laptop, which I guarded with my life. At this stage, my classmates were well-versed in carrying my laptop and schoolbag to the next class. While I was grateful for their help, it occurred to me that I didn’t want to be grateful, because it meant that there’d always be a power imbalance between us. Little did I know that good old Mrs Mc had thought of a solution to that, too: an academic assistant, someone to take my laptop and schoolbag from class to class, as well as taking notes and filing them. Now, a big pink chair was one thing, but surely having an actual person following me around all day was going to be a huge obstacle to maintaining any real friendships? She’d probably force me to study all the time and tell the teacher whenever I was passing notes. How wrong I was!

By the time I started third year, I finally found my stride. Caitriona (and from TY onwards, Anne) took me from class to class and took notes. Sometimes they’d sit beside me, usually in classes where I needed their help, while in other classes they would sit at the back and take notes, and both instances allowed me to interact as an equal. Given that neither lady had any formal training, the support that they both gave was top-notch. They never ratted me out when I forgot to do my homework, playing along as we rifled through folders knowing that there were no printouts in them. Their support was invaluable, but I called the shots; I was solely responsible for my own assignments and grades. Later, Caitriona would invigilate my Junior Cert, and Anne my Leaving Cert, offering me some comfort during stressful times.

Once I overcame the embarrassment of needing this assistance, I started to accept myself, and the Sacred Heart played a huge role in my becoming comfortable with my disabled identity. I blagged my way into Transition Year by promising to write a play, and during the summer of 2000, I found to my surprise that I could write a play, because the teachers believed I could. Not only did I write (and later edit) a play, I convinced the teachers to allow me to stage it, and I also helped to produce it. Now, I thought this would make me unpopular in my year and that I would be ostracised for having this privileged position, but surprisingly it had the opposite effect, and I made some loyal friends who stood by me during those tough Leaving Cert years. Because of this, fifth and sixth year were easier, because I no longer felt alone or a burden: I was Simply Sarah.

I shied away from PE, but I threw myself into everything else.  I sharpened my culinary skills. I tried guitar lessons. I went surfing and canoeing in Achill, thanks to Mrs Healy’s support, the same teacher who encouraged me to write “Waiting for Anna”. I did my work experience in the old Tullamore Tribune office on Church Street, which was up a flight of narrow stairs, and forged a working relationship with editor Ger Scully who, even now, always publishes my work if it is good enough. For the first time, I started to contemplate a future that involved real qualifications and a meaningful job, maybe even a career.

Although I found the Leaving Cert years tough going, I still enjoyed school. By now, I felt like I was truly part of a community. Mornings began with Sr Frances in the office, who I loved winding up; the more she advised me to take it easy, the harder I worked, just to annoy her. She often printed out homework from the evening before and filed it (I’d leave my laptop in her office in the evenings after “Afterschool Study” from 4-6 each evening). Whenever I refused her help, she’d call me “stubborn as a mule”, to which I’d bray with laughter. 

What I loved most about school is that the teachers didn’t treat me with kid gloves, and I was punished for forgetting homework, or not knowing my definitions, just like everyone else. I remember the fuzzy feeling of being able to complain with my peers about Ms So-and-So’s bad mood or how much homework we got. Because I was regarded as a swot, my classmates would often request my notes or assignments, and we became experts at committing (tiny) acts of plagiarism. They repaid me in their own notes and by making me laugh, usually during English class, much to the frustration of Ms McKenna. Had I not been such a keen English student, I have no doubt that I would have been expelled!

It’s hard to see when you’re in a fog of adolescent hormones, but I will be forever grateful that I went to the SHS. The career guidance teacher, Mrs Lynch, was instrumental in my decision to go to Trinity and consequently live independently in Dublin, a move that I hadn’t even contemplated to be possible. She also nominated me for a Bank of Ireland Millennium Scholarship which enabled me to live on-campus in Trinity for four years without financial worries, while I read English Studies (well, read when the notion took me). Later, Ms McKenna became an informal source of guidance, and I was so grateful for her time and friendship.

No-one knows what future holds, but I hope Alison’s journey through secondary school will be just as enlightening and fulfilling. Ultimately, though, she has to follow her own path, and I can’t wait to see where this new journey takes her. Hope she has as much fun as I did.

Sunday Reflection: In Preparation for 2025

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In almost every way, I’m afraid 2024 has been a bit of a letdown. Like a lot of writers, I sat down a few days ago to do an evaluation of my year and disappointingly, in terms of productivity, this has been the year that I’ve done the least writing since I started writing ten years ago. I feel like I let myself down – a whole twelve months without much to show for it. My year began with a trip to the doctor’s office in mid-January, crippled with the most paralysing bout of depression I have ever experienced. She asked me some uncomfortable questions, which made me realise how bad things had gotten, and filled me with indescribable shame. 

I withdrew from everything. I stopped texting friends. Stopped trying to achieve any hint of literary genius. My editing course, which I started a year ago, remains only halfway completed in a cloud somewhere on the net, which is so unlike me – I’ve always flown through my writing related courses. And poor Rachel has been wantonly abandoned in favour of mindless Netflix binges (namely, Taskmaster binges), which is definitely out of character for me – I don’t watch telly really; I didn’t even watch much of it when we were in lockdown, opting instead to try writing flash pieces and to work on the compilation of Conversations about Activism and Change. I’ve lost my confidence, not that I was abundant in it to begin with. 

While I became overly comfortable in my cocoon of fog and self-hatred, a whole year of promise and opportunity passed by. Listen, you must admit that it’s not difficult to become disheartened by the state of the world around us.  I would strongly advise against binge-watching Reeling in the Years for the years 2010-2019, especially if you still have any hope for the future of humanity. Plus, the last few Covid-riddled years have not been easy on anyone, and I’m sure I’m not alone in becoming comfortable in my own company. It was too much time to think, to reflect on all the wrong turns I took, little bothreens that led to dead ends, the many mistakes I’ve made along the way.  

Staying in your head for too long isn’t good for anyone, especially since it’s now universally acknowledged that our toughest critics are the people who look back at us in the mirror. Also, through listening to various podcasts, Mel Robbins being one of my favourites, I’ve come to recognise that my own thoughts about myself are not necessarily true, and that we are hardwired to be risk-averse, because our brains are designed to protect us, a thought regularly echoed by one of my writing mentors, Maria McHale. This way of living, apparently, is not conducive to the creation of art. Indulging in art is risky, because it necessitates opening your soul and using the most personal of experiences to create something that other humans can relate to. 

I cannot waste another year frozen in time, watching any prospect of a writing career sliding down the toilet, and so I am renewing my commitment to keep writing, no matter how demotivated I feel, or how shit I think my words are. Apparently, not everything a writer produces will be dripping with brilliance – who knew? When I started out ten years ago, I thought that churning out novels would be effortless, once I got the hang of it, of course. Enid Blyton could bash out two “jolly good” novels a year, so surely I, too, was capable of it too? Turns out, it’s not that straightforward. Enid Blyton didn’t have to wrestle with the distractions of the Internet – possibly the worst enemy of the would-be prolific writer.  

Also, just because teenagers are more physically independent doesn’t mean that you are redundant, whether you are the taxi-driver or the clothes-washer. And my daughter has no interest in divulging anything that’s going on in her life, until it’s nigh on ten o’clock at night and my eyes are getting heavy – then absolutely everything comes out (and I must admit, I secretly love it!) Being a parent will always come first, but right now I’m relearning what my role is. On one hand, I have more time to write (and more time means less excuses –  theoretically I should be able to blog every day); on the other hand, I spend my time ensuring that all sports gear is washed and dried ready for impromptu matches, and keeping an eye on those cursed WhatsApp group chats. I have so much respect for people with more than one kid, who need to be in two places at once. 

I wanted to post this, firstly as a promise to myself to get more words on the page, regardless of how lousy I think they are, and secondly, as an attempt at solidarity to anyone who’s coming to the end of an equally unproductive year, especially if you, too, have had your plans scuppered by mental ill-health. I see you, and I want you to know that we are worth more than our productivity, that achievement is relative, and even making tiny steps beats doing nothing at all.  

Finally, a warm thank you to those who refused to leave my side this year – you know who you are – especially my rocks,  my husband and daughter. I am so lucky and I love you all x 

Tiny Thursday Thought: Elves not quite Shelved

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It is the 5th of December, and Archie, Sparkles and Ellie, Alison’s elves, have not arrived yet, the lazy sods. Gang, I have searched all the usual places, but I cannot put my hand on the troublesome trio. But I thought, it’s not a huge deal. After all, Alison is twelve now. She’s nearing the end of her first term in secondary school. She’s gone to two teenage discos, has experienced her first crush. Too old for elves, right? She caught me putting them in the blender a few years ago, with Lotso sitting on top, so the game was up; she knows it’s me. But as I write this very piece, I’ve just answered the door to a package ordered in a hurry, containing replacement elves. Honestly, the things we parents do for our (preteen) kids!

Just last night, when I was having the usual bedtime chats, Alison surprised me by asking whether the elves were coming back. Because she’s old enough, I told her the truth: that the original ones are missing, and that I ordered new ones to come and stay. To my surprise, she handed me her two foot ornamental gonk, winked at me, and said, “I wonder if this lad will turn magical and do something when we’re asleep tonight.” This morning, she found him sitting up in the bath, a handtowel wrapped around his waist. Surprise, surprise: I’m not too inventive at nearly eleven at night. Now, she didn’t exactly squeal in excitement, but there was definitely a hint of a smile on her face. Even though she’s now in secondary school, with a schoolbag heavier than an army tank, she’s still just my little girl looking for magic.

Like many parents of my generation, I got sucked into the Elf on the Shelf thing against my will. My friend introduced Archie to our home (if you’re reading this, thanks a bunch Kate!) when Alison was four. She’d already been introduced to an elf called Archie in playschool, a sort of mini-police officer dressed in red, that reported back to Santa on a daily basis. To be honest, the whole thing freaked me out a bit, not to mention the toy’s creepy little face. The whole idea behind it is to report behaviour to Santa. Oh, and apparently if you touch it, the elf loses its magic.

Neither of these things I have ever said to Alison. It was something she learned at playschool, and explained to me as I looked in wonder, pretending not to know where Archie had come from. Controversially, I decided that if Archie was going to be a fixture in our lives for at least the proceeding eight years, then I didn’t want him to be a tattle-tale to Santa. Alison was an only child, and she deserved to have an ally. Mum and Dad were always on her back; she didn’t need a creepy little doll watching her every move as well. She needed a confidant, someone she could have a laugh with.

As the years have flown by, the elves have been on so many adventures, from wallet robberies, to playing concerts to packed-out audiences and of course, Alison’s favourite – the winter wonderland, which is all our Christmas ornaments laid out on the coffee table and dusted with flour (always an absolute nightmare to clean up). I’m a writer, and this is one of the few times it’s paid off: Archie, Sparkles and Ellie write individual notes to Alison; each note has its own distinctive voice, and as she got older, Alison started to write back. I would argue that there is no greater writing exercise than trying to get into the quirky minds of imaginary elves, at eleven at night. And if she’d written to the fairies too, well, let’s say they were some of the few times I’d wished I was a coffee lover. I’m simultaneously proud and ashamed of the BS I’ve churned out over the years. Then, of course, you have to keep track of said BS, because although you can’t remember whether you said that Snowflake’s hair was red or blonde, Alison remembers. (Yet I can’t include these notes in a professional writing portfolio. The injustice!)

By the time Alison was nine or ten, I was starting to run out of ideas for the elves. Think about it – six years times twenty-five days meant 125 different elf antics, all in the confines of my house! Two years ago, in desperation, I turned to Facebook and followed the Elf Idea pages, hoping for new antics. Some of the ideas are so elaborate I wonder if these people have jobs. Nonetheless, I’m all for making Christmas magic – to a point, of course.

This morning, however, as I was scrolling through Facebook instead of doing my morning pages (an exercise, a bit like this blog, where you write pure crap in the hope of eventually hitting gold), I came across a post from a parent who wanted the elf to punish the child for not doing well in a school test! If that wasn’t fecked up enough, other parents offered suggestions! Now, of course on bad days, I’ve pointed out to Alison that Archie, Sparkles and Ellie are reporting back to Santa, but my husband and I decided that we were the parents, *we* needed to take sole responsibility for disciplining Ali if and when necessary. I did threaten her once or twice, but on those rare occasions the elves have written saying that although Alison was naughty, they knew that she was a good child, a human child who makes mistakes. A lesson that, over the years, the elves have been more successful at teaching her than we ever could have been. A reminder to a little girl who is sometimes too hard on herself, that she, too, can make mistakes and still be loved.

This may be a bit controversial, but the idea of a wiry doll dressed in red holding a kid to account for their behaviour doesn’t sit well with me. Santa is one thing, but he’s not a physical presence in your house, and isn’t that the beauty of it? Can any of us, child or adult, be good and “well-behaved” every hour of the day? I think not. So why has expecting this behaviour from children, especially at a time of the year when they’re exhausted from routines and early mornings, not to mention friendships and the chaos of afterschool sports and matches, become the norm?

Talking to a disappointed Alison last night made us both so emotional. Because the truth is she needs those elves. It’s a form of communication between us about things that might be difficult to express. A reminder that we all need a bit of silliness in our lives, that we deserve to be loved in our best and worst times. And if that’s what those silly red dolls represent to my daughter, then I’d better go and google enough antics for the next twenty years, obviously while staying away from those stupid Facebook groups.

My little girl might not be so little anymore, but she’s reminded me that the little things are still the big things. And I’m so excited to see the look on her face when she comes home today.

Dear Martin Naughton…

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A letter to Martin, eight years after your passing

(written after going to see No Magic Pill in the Black Box Theatre, Galway on 9 November 2024)

Dearest Martin,

There are around six hundred thousand people with disabilities, the term you used, in Ireland. Yet, for some reason, you seem to have had the biggest impact on many of our lives, regardless of disability. You were an extraordinary man, even though, just like your peers, you were probably made to feel “less than” for not “making an effort” to walk or try to conform to mainstream society. You taught us that the discrimination we faced was not our fault, through discovering this fact yourself.

I consider myself an intelligent woman, yet until we met, I genuinely thought that it was my duty to push myself to become almost normal. I did not believe it appropriate to highlight my own weaknesses and shortcomings, for fear they would be used against me. Until I met you, I thought I was great for hiding my struggles, for beating myself into a world that I didn’t seem to fit into, for doing everything myself rather than asking for help. When we met for the first time in 2005, the first thing I saw was an older man with greying hair. What could this auld one possibly know about life, I thought. Little did I know that it was down to the actions of you and your friends that had enabled me to have the relatively sheltered mainstream life I enjoyed, and by “sheltered”, I mean I was sheltered from feeling the full effects of institutionalisation, exclusion and rejection. 

That June day, in Chief O’Neill’s in Smithfield, you shattered my world into pieces, and I found myself questioning myself and everything I’d ever been taught. Was it heroic or folly to try to hide the elements of myself that made people uncomfortable? You led me to realise that there was nothing wrong with me, and that there never had been.

I remember our first conversation. You asked me if I knew what a Leader Forum was, and I said yes. We both knew I was lying, because at the time, there was no such thing. Yet something about you told me that I had to “fake it ‘til I make it.” From that moment on, I watched as an entire movement came to you looking for answers. It seemed that you always knew what to say and do. What was that like, were you honoured or did it piss you off from time to time?

From that fateful June day, you have been in the background of everything I have done and achieved; living independently, working with Offaly Centre for Independent Living, and when I was presented with the opportunity to get married and have a child. I thought of you and how you and others had led the fight that enabled me to have these luxuries (yes, they should be rights, but I think we’d agree that we’re not quite at that point yet). You lived as you pleased; you didn’t answer to anyone, something that so many of us continue to aspire to.

Like many of us, I put you on a pedestal. I always expected you to have the answers. Did you like this, as so many people intimated, or did you feel lonely? Please know that watching you spurred myself and so many others to find our own answers. If you could do it, anyone could. I recall when I worked for you that summer of 2005, how frustrated I became with you for asking me to set up a Leader Forum, but neglecting to give me any hints as to how to do this on a practical level. Now, twenty years later, I understand why: you wanted me to find the answers myself, to take risks, to fail and learn from my mistakes. I guess I should thank you for trusting me, because since then I’ve taken plenty of risks which have led to a life that was beyond reach for many of your generation.

I remember watching the last “action” you would ever take in September 2015, and shaking my head in frustration as members of the general public asked what it was about. It made me wonder why you even bothered trying to make a difference. Then I remembered that you have seen the grey walls of an institution. You truly understand what losing freedom and liberty is like, and that’s why you dedicated your life to ensuring that it didn’t happen again.

I guess all that’s left is to thank you. Thank you for coming into my life during a formative time, when I was still ashamed of being associated with the “disability sector” in any way. Thank you for changing how I value others and myself. I’d always connected my own self-worth to the tasks I could carry out unaccompanied, buying into a widespread consumerist belief that wearing yourself out in the name of productivity was akin to a badge of honour. Thank you for teaching me that my wobbly body was not the cause of my exclusion. Thank you for granting me the permission to speak out against the systemic discrimination that we face on a daily basis.

I don’t think you truly realise the profound impact you had on people. Christian O’Reilly has made it his life’s work to capture your story, not giving up until he had captured the essence of you. I have seen “No Magic Pill” twice now, and although the actors portrayed the characters to an Oscar-winning standard, it’s the feeling that seeped through my being both times I’ve watched it. Paddy Slattery and Eric Fitzgerald portrayed you in different ways, but watching them, it was you I felt beside me, as if I was being given a second chance to say goodbye properly. That said, it might be argued that even after eight years, we are not ready to say goodbye. Between “No Magic Pill” and your autobiography which was co-written with Joanna Marsden, we can hold onto you for that little bit longer.

Most importantly, thank you for being you, without which many of us would not be enjoying true Independent Living. May we always be strong enough to protect everything you and others ever fought for.

Love Sarah xx

Thursday Thoughts: All in My Head

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(written 21 October 2024)

I’m sitting at my computer this morning, while my two dogs snore loudly on their bed beneath my black desk, the one I got last year in JYSK and assembled with the help of then eleven year old Alison. This is what every working day should look like for a writer: Microsoft Word open on the screen, the cursor blinking impatiently as it waits for you to input the masterpiece you are weaving in your head. It’s been almost ten years since I decided to throw any prospect of future employability away and instead pursue some vague ambition to become a writer. 

Most days, I enjoy it. Above everything else, as I have mentioned several times before, writing has often been the only thing keeping my fragile mental health from shattering into bits. If you, dear reader, have any perception of what this feels like, then you can also imagine how frightening it is when you feel yourself being pulled down that dark road of nothingness, and the thing that you normally rely on to pull you out – a string of words – refuses to materialise. Not only were the words not appearing, my will to sit in front of a screen while I bubbled with frustration was also fading quickly.

I’ve been wrestling with mental health issues for years, along with approximately twenty-five percent of the population. Over the last few months, I’ve recognised a pattern which sets the darkness in motion. First of all, I become tired, just like any ordinary person becomes tired. When I’m tired – and I’d wager I’m not alone in this – even the simplest things become overwhelming. There’s an extra load of laundry I hadn’t planned on tackling today. Alison’s bedroom may look clean, but if I open the wardrobe and drawers, I’ll have to deal with the crap in there. None of these things are life and death, as long as you’re in the right state of mind. 

As for writing a novel, well. You might as well say go and climb Everest, because neither seem possible when the black dog comes and licks your hand.

I know in part that the chronic pain I now live with contributed to this round of misery. It’s been four years, and yet I’m struggling to accept that what my mind wants to do and what my decripit body is able for is not in alignment. Lowering my standards isn’t in my lexicon, and that creates problems daily. Often, I go to bed frustrated because that load of laundry lies unfolded in the dryer, or because there’s toothpaste cementing on the side of the washbasin. I am a writer, but I’m also a stay-at-home mum and wife. If my husband can manage his job and bring in a wage, then why can’t I manage mine?

Then, of course, it occurred to me that the above narrative is not helping my mental state, and that the only way out is to be kind to myself. This is in direct opposition to everything I’ve trained myself to do over the years. Tough times? Push through it. Want results? Work harder. After a spell, the messages become nastier. What made you think you could write a book? What’s the point in applying for work, when your last full-time job was ten years ago? Imagine this on repeat all day, like a soundtrack on Spotify; sometimes the order shuffles a bit, but the core messages are invariably the same:  You are going nowhere. You have wasted your life.

Before the summer, while packing to go to Australia for a month, I just said enough. I had just turned forty. I’ve no novel, no marvellous collection of short stories, and not enough work coming in to justify my role as proofreader. But why do I rely on these titles to give me my sense of self-worth? I came in here into my office and took out Conversations about Activism and Change, which may be the closest to a published book I’ll ever achieve. And while it isn’t perfect, I now leave it on my desk as a reminder that I am capable of conceiving and completing a project. I can handle the monotony of transcripts and editing, and editing, and more editing. Now, I can be proud that the book has made a contribution to Irish disability history. A book that came from a throwaway comment to a friend about yearning to record the people’s history of the movement.

At the moment, it often feels as though I’m watching my own life from the outside, like a boring silent film, but I have started to chisel away at the glass and hopefully soon it will shatter completely. I’m impatient by nature, but now I’m coming to accept that I can’t just bounce back into the life that I drifted away from this time last year and expect to pick up from where I left off. That said, my friends have all been incredibly patient and understanding and have helped me in rejoining society, physically and mentally. I also know I need to be kind to myself. Losing so many friends in the space of a few months has hit hard, and I need to readjust to loving them in a different way to what I might like. But I am getting there, and it seems that writing might be the key.to unlocking my life, after all.

Tuesday Thoughts: Pain in the Ass

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(aka JP’s affectionate term for me. Just kidding)

 (This post was inspired by Julie Helen’s column about her quest for a new wheelchair. I strongly encourage you to read her weekly column on EchoLive, where she writes about a wide variety of topics from a personal perspective.)

It was the weekend of my mother’s fifteenth anniversary that I discovered the letter in my postbox outside, and I took this as a sign. I opened it excitedly, knowing exactly what it was. At last, after fighting for the guts of three years, I had an appointment to administer a pain injection into the buttock of my right leg. This couldn’t come at a better time. The appointment was for Friday, 7 June 2024, and we were due to go to Australia on 1 July. I shivered in excitement at the thought of running around after my sister Alex’s little ones, Cathal and Grace, playing with them on the floor. For the first time in four years, I might sleep for more than two hours straight! Imagine waking up refreshed! Thus, I’d have more energy to write, and do courses, maybe even start cycling on the trike again (I do 2/3 45 minutes sessions on the exercise bike a week, but it’s not the same). 

As the day drew nearer, I did an extra physio session every day, as I dreamt about my pain-free life, smiling as I imagined folding up the wheelchair and throwing it into the spare room. I was tired, but I didn’t care. All of my hard work would be worth it when I was back wobbling around the place.

I don’t know what I was expecting from a little pain injection but suffice to say I will never know. Friday, 7 June was a sunny morning, and I beamed broadly as JP drove us up the M50 towards Tallaght. It seemed the universe was working in my favour; there was hardly any traffic, we didn’t miss our turn-off, and we were parking outside Tallaght University Hospital at 9.15am for our 10am appointment. JP was excited too; I’m sure I wake him often, tossing and turning all night. We found our waiting area quickly, and at 10.20am my name was called. When we reached the room, everything was waiting: the team of doctors, the ultrasound machine, the bed covered in tissue. It was a moment of triumph. I’d been fighting for this moment since November 2022, when they told me that there was nothing they could do for me. And now my recovery was about to start at last.

I was helped onto the bed and a team of doctors carefully pulled down my trousers and started the scan. Suddenly, one of the doctors asked for the head of department to come down. Apparently, even though I maintained that he was rubbing his scanner over the painful area, they couldn’t see my sciatic nerve. Now, I’m crap at biology – my Junior Cert teacher regularly read out my test answers to entertain the rest of the class for the comedy effect – but I do know the sciatic nerve is the main nerve, and if they couldn’t find it, I wasn’t sure I wanted them anywhere near my ass with a needle. 

 I was asked to sit up and I was helped back into my wheelchair. I tried to act like a professional patient, but I couldn’t stop the stinging tears rolling down my face. Your injury is probably just a contusion, they told me. You couldn’t stay still enough for the scan, and we can’t really see any damage. We’re sorry.

This has gone on for four years, I said. So you’re saying this pain is all in my head?

No, no, of course not. We’re saying there’s no silver bullet (Martin Naughton might say “No Magic Pill.”) Keep up the physio, painkillers, TENS etc. Pain management must be a priority in the long term.

Dammit. They warned me that would happen, but I’d pushed for the injection anyway. I have never felt more stupid. Driving home in the car, I saw my fantasy of getting my twenty-year-old body back disappear. More importantly, my dream of walking around Australia on my holidays vanished into thin air.

I never used a wheelchair in my life until I was nineteen years old. Day after day, I pushed through pain and tiredness as I trudged around the Sacred Heart School, going up and down stairs, navigating through the crowd. This was on top of cycling to and from school, every day, for six years. I was pretty darn proud of myself, I won’t lie. I developed an irritating superiority complex where I thought I was better than other disabled people. I was integrating myself like a fridge into a kitchen, becoming invisible in the process.

I have never felt more valuable as I did in my younger days, and now I can see how problematic that is. I’ve written before about my experience of internalised oppression, and even at the ripe age of forty, I struggle to shake it completely. The truth is, I am ashamed of how my mobility has deteriorated. I tend to view it as a personal failure to push myself, to take care of myself, rather than the result of years of trying to make my body do things it’s not designed to do. Sure, I made a choice to use a wheelchair so that I could have energy to write these blogs and hopefully, with Ali in secondary school now, re-enter the workforce and get involved again with the Independent Living Movement. I know the reasoning behind my decision was sound, and yet I haven’t fully dismantled the years of internalised oppression, so let’s face it – I’m an awful hypocrite.

The realisation that I wouldn’t be walking around by the time we went to Australia hit home like a sledgehammer. However, when we stayed with my baby sister in Australia this summer, I was determined to show her that I was still the same active rogue I’d always been. She’d sourced a steel walking frame from her neighbour Dell, and not having the heart to explain that I don’t really walk too far anymore, I accepted it with a grateful smile, while loading up on painkillers. For the first week or two of the holiday, I hobbled around the house, knowing what I wanted to do, but too ashamed to say anything. The second weekend we were in Oz, we all took a road trip up to Jurien Bay. Our accommodation was accessible, so I could use my wheelchair the entire weekend. 

When we got back to my sister’s house in Clarkson, without prompting or any pre-discussion, my sister Alex greeted me at the car door with my manual wheelchair. No words, no “I know you need this”, not even “I think this is a good idea.” That evening, I set the table, unloaded the dishwasher and hoovered, and I know my sister was struck by the difference in my independence and energy levels.  Not having to pretend was a relief for both of us, and I was surprised by how easily she accepted my need to use the chair – without question. She didn’t say she was sad, or disappointed, or ashamed – that was purely the narrative I’d woven in my own head, a stick I was using to beat myself up with. 

It got me thinking about the wider issues of equality and acceptance which, if you’ve read any of my other blogs, you’ll have gathered is something that I’m passionate about. But how can I expect other people to subscribe to the idea that disability is located outside the self, if I don’t? If I continue to connect my self-worth to my body’s ability to adapt within a society which, directly or otherwise, serves to exclude me, my self-esteem will plummet through the floor! More pertinently, I am handing the systems that discriminate against me a viable excuse to do so, on a silver platter. And whether I like it or not, I am not just an “I”. I am a “we”, a part of a wider collective trying to change attitudes and remove barriers, something I will not be able to do until I change my own attitude towards myself and accept myself in all its wobbly entirety.

Being underemployed at the moment, I cancelled a load of my subscriptions, but one I held onto was an affirmation app, which sends me random affirmations during the day. I admit I don’t always read them when my phone pings, but this morning I just happened to flick through them on my watch, as I sat on the toilet. “I am allowed to take up space,” “It is okay to have a hard day,” “I am patient with myself”, and “I have the motivation to create change,”” are just snippets of the messages that come through hourly. We need to change the messages that we as Disabled People are absorbing and, consequently, sending back out into the world. Most importantly, we need to change the stories we tell ourselves, about ourselves.

I often feel like a right pain in the ass when I write this kind of blog, but this – along with other authentic voices of Disabled People – is the only way to change the narrative around disability, for ourselves as well as within wider society. When we take control of the narrative, we can write our own endings, hopefully depicting a fairer world of acceptance and inclusion.