Category Archives: health issues

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.

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 

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.

Tuesday Thoughts: The Baby Book

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Even though I have my own swanky writing office, I’m currently sitting in my kitchen typing this, the back door open so that the breeze on my face keeps me awake, and so that the dogs can potter in and out without scratching at the door every five minutes. In front of me, on the wall over this dining table, are two black frames full of baby pictures of Alison with her aunties, her uncle, her grandad. It seems as though my love for her is splashed across the walls of our house. Her playschool graduation photos hang in the hall; her communion photos are in the sitting room. 

I’ve always loved photos. When I moved to college, the inside of my tiny wardrobe was covered in photos of family and friends. Until I got my first camera phone, I would bring these photos with me to remind myself that I was part of something bigger.

I didn’t own a camera phone in 2012, when our daughter was born. I didn’t have a whole lot, in fact. But life goes on, and incidentally, people who try to tell you that you should wait until you can financially support a child are talking nonsense. You will never be financially ready, or ready full stop. We were both working part-time, and juggling childcare between us, and a lovely lady called Sharon. And because we were both working, neither of us had medical cards. When Alison was diagnosed with cow’s milk allergy in June 2012, she was prescribed Nutramigen, which was €12.33 a tin at the time, so three tins was nearly €40. Camera phones were the last thing on my shopping list.

When I look back now, I wonder if I should have tried to savour it all a bit more. It wasn’t as though I wasn’t warned about this. People warned me that the days would drag but the years would fly. Advised me to treasure every moment, because she’d be gone before I knew it. To really make the most of it. And to be honest, now that Alison is entering her teen years and I’m trying to figure out what my new role is, I feel awful for having taken it for granted. 

As Alison and I enter a new and trickier phase in our mother-daughter relationship, once again I’ve found myself questioning my parenting ability. I know my parenting was scrutinised by professionals in the early days, but these days I find myself to be a harsher critic than any nurse, doctor or social worker. I need to be more delicate. No, more direct. No, more lenient. No, stricter. I give her too much independence. I need to let go more. Come nine o’clock, I will have a pain in my head, as I’m sure all parents of teenagers do. And this is without the traditional worries of sex, drugs and rock’n’roll, which I know are only around the corner.

And I see now that I should’ve captured her a bit better. I didn’t keep the first lock of hair that was cut. Nor did I keep any of her teeth. I have videos of school concerts, blurry ones that were taken by my shaky hand. I have incoherent handprints, futile efforts to capture her at a certain age. I didn’t mark the wall every year as she grew taller – this is the one that I regret most. I haven’t even made a baby book. A book recording her first words, the first time she crawled, her first steps. I don’t have the hair from her first haircut. These things weren’t priorities at the time. My main focus was on surviving and giving her as much of myself as possible.

Yet, I have such lovely memories that are mine alone and I don’t need to share with anybody.

Memories of teddy bear cinemas on Sunday mornings. Of tea parties and picnics on the kitchen floor. Of doing all the things I’d swore I’d never allow my child to do; Play-doh, sandboxes, art involving glitter and paint. I remember midterm breaks that involved me bringing her to Mr. Price to buy a few bits for a Pinterest-inspired art project, especially around Easter, Halloween or Christmas. Clay figurines, lollipop stick houses. It was a joy to watch, as she got older, the improvement in her colouring or the increasing time she’d give to painting decorations. She would design our Christmas cards and handmake birthday cards for family and friends, projects that were thinly disguised activities to get us both from one day to another on days where I struggled to hold everything together. 

Or we’d walk down the canal and pick flowers (weeds), again killing time while she looked for “rare” flowers. I used to love these walks. We’d find conkers and helicopters, all of which were pocketed of course, then caused problems in the washing machine when they were undiscovered. I remember the long days we spent in the town park, chasing birds or looking for butterflies or ladybirds.

I remember teaching her how to read, making cards with words like “table”, “chair”, and “fridge”, and watching in awe as she stuck them to the correct objects around the house. I remember the first book she “read” on her own: Angelica Sprocket’s Pockets by Quentin Blake. I remember her first day of school, how lost she looked in her uniform, yet how enthusiastic she was. In fact, until last year, Alison rarely missed a day of school, such was her love of learning.

On the sad day when she decides to fly the nest, I will have copious amounts of artwork, stories and photos to look back on. But the most precious will always be my memories, of a happy, intelligent and truly unique child, which will live in my psyche until I take my last breath. I know that I did my best. And I have a loveable girl to show for it.

Tuesday Thoughts: Empty Batteries

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(written Wednesday, 20 March 2024)

There’s nothing more annoying than when your day is scuppered by a minor inconvenience. I can’t speak for anyone else’s kid, but I know mine is tired. It’s been a busy term with schoolwork and projects, bake sales and fashion shows, football matches and National Slow Down Day, mingled with visits to her new secondary school, weekend basketball matches, meeting up with friends and sleepovers. And as much as I want to sit on top of her sometimes to slow her down, I restrain myself, reminding myself she was practically locked up for six months of her childhood. No wonder she wants to do everything and make up for lost time.

Anyway, back to my day. Wednesday mornings are always slow, because of basketball training on Tuesdays, so I wasn’t surprised that the sprog ran out the door this morning with no lunch and, more importantly, to her mind at least, no mouthguard, without which she wouldn’t be allowed to play in her school football match. Luckily, we live ten minutes away so I hopped into my wheelchair and flew down to the school to drop it off. Now, the school is a kilometre away, which makes it a two k-round-trip, which is nothing to my wheelchair, an Invacare Storm. However, coming back into my driveway, I noticed that one of the “bars” had disappeared. One bar of five. 

So, logically, you might think, well that means you could get ten kilometres from a full charge. And you would be correct, if it wasn’t for the fact that my wheelchair is long overdue a service. Any seasoned powerchair user will tell you that four bars left doesn’t necessarily mean your battery capacity’s at eighty percent. If you’re a gobshite like me, you might even try to push the limits of your wheelchair battery, a dangerous game. You know in your heart, as you set out to the shop a mere four hundred metres away, that the sodding thing could stop dead without warning at any time. You know it, and yet you still take the risk, trying to ignore what the universe tells you.

Because the world goes on, right? Who has time to wait for parts to come when there’s dogs to walk, basketball training, shopping to do? My front tyres are beyond bald, and my back tyres aren’t far behind. You can actually see the rubber underneath, which I’ve never seen before. Beyond threadbare. Realistically I shouldn’t be using it at all. 

And it made me think about how we push ourselves to keep going, even when all the signs are telling us to stop. Resting and taking time off have become dirty words in our culture. I read somewhere recently that, thanks to the convenience of remote working, some of us are working sixty/seventy-hour weeks, for no increase in wages. We live in precarious and stressful times. The cost of living has become untenable. (I read a 1984-esque article the other day, which said that the cost of living was starting to come down. Sure, coming down from a twenty-year high). We’re working harder than ever, with little extra to show for it. 

In addition, this winter (in my unqualified opinion) has been one of the worst for bugs and viruses. Alison has missed eleven days of school this year. This is a child who was never sick; who, until COVID, had near-perfect attendance records. Now I find myself trying to ply her with vitamins and tonics in the hope of keeping her well. The obvious reason is that because we were locked up for so long, we weren’t exposed to any viruses and now our immune systems have gone to pot. And it isn’t just children, either; so many adults I know have been wiped out in the last few months by various complaints. 

The saddest part of this is that lockdown taught us some valuable lessons that we seem to have forgotten. Many adored the slower pace of life and swore that they’d never go back to normal. People started exercising more, cooking healthier meals, pursuing the hobbies they’d never found time for. We promised we’d always make time for our loved ones, and for ourselves. Now, we’re busier than ever, desperate to make up for lost time. Coupled with the barrage of news about Gaza and Ukraine (and as I write this, Leo Varadkar has just stepped down as Taoiseach. Never liked him; he never did answer my open letter), we continue to live in uncertain times. Then, haven’t we always lived in uncertain times? The Troubles, 9/11, the London bombing, Paris and so on. Such is the nature of the world we live in: it doesn’t stop.

That doesn’t mean that we shouldn’t, as I was reminded a few months ago when I hit a wall. Funny how it’s only when the battery has fully drained do I acknowledge that there might be a problem. I won’t go into the boring details of what caused it, but I will admit that I ignored all the warning signs. My chronic pain was flaring because of the cold weather, and I was wrecked from lack of sleep. But I was still able to keep house and parent, so it wasn’t serious, right? Wrong. Nonetheless, I completed the first stage of my editing course, but at a cost. I was like a zombie, with a chip – the slightest thing made me either angry, or cry like a baby. The more I tried to push through, the harder it got. It felt as though a force from beneath was trying to suck me into the ground.

When did you start feeling like this? My husband asked.

October, I sheepishly admitted. 

This was the end of January, after Alison’s confirmation. I was so exhausted, and I didn’t know why. I don’t have a taxing life. I don’t work 9-5, my child is now a preteen and I get help around the house. Yet, I ignored the warning signs. My chronic pain was through the roof, and instead of taking note and putting on my TENS machine, I was pretending it didn’t exist. Instead of napping to make up for the broken sleep, I was sitting in front of the laptop writing gibberish. I was officially empty. It was scary, but I’m slowly coming out of it now.

My wheelchair needs a full service, having not had one in nearly four years. Chances are I might have to apply for a new one, because at the moment I don’t trust it, and even the best wheelchairs have a shelf life. And we humans also have a shelf life. I am a huge fan of Mel Robbins, motivational speaker, (I wish I could apply all her advice to my life; I think I’d be on my tenth bestseller now), and in one of her podcasts, she pointed out that we have not taken time to heal from the collective trauma that COVID has triggered, and that as we rush back to normal, we need to find ways of processing that, as well as looking after ourselves physically and mentally. Coupled with international unrest and whispers of another economic crisis, we have not allowed ourselves to heal. So how can we be our best selves?

At the end of the day, my wheelchair is a tool, which can be repaired or replaced. But we are not tools. Our sole purpose is not to produce, but to live, love, and experience the world. In the grand trajectory of the lifespan of the universe, we are here but for a few short seconds. And in order to make a difference, we have to be in tip-top condition.

Go Easy

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I’ve grown up a bit since starting this blog. A few short years ago, when I wrote a blog for mum’s birthday, I mentioned my disappointment in failing to secure Adele tickets. I knew every word to her new album 25. But oh, how priorities change! Although my daughter is almost ten, I’m not as time-rich as I’d envisioned. I still have to parent, albeit it has become easier physically (though trickier emotionally – the joys of parenting a preteen, what with monitoring screen-time and conversations that turn into mini-debates). I’ve been so busy that I haven’t even had time to listen to Adele’s new album, but I’ve heard “Easy on Me” and it’s definitely a message that I want to scream at the top of my lungs.

World, go easy on me. No, that’s not what I want to say. I want to say: Sarah, go easy on yourself.

Almost twenty-two months. It’s been almost twenty-two months since the “old normal” disappeared overnight. The end of February will mark two years since Covid19 reached us here in Ireland. None of us could have imagined how much would change between then and now.

We were resilient then. We were prepared to do whatever we had to in order to curb the spread of this new virus. We stayed at home and worked in our pyjamas. We homeschooled the kids, against all of our wills. This was only going to be for two weeks, to flatten the curve, we were told (but nobody believed this). Our children saw out the end of the 2019/2020 school year at the kitchen table. On the day that the first lockdown was announced, our daughter had just brought back into school her consent form for her school tour, an indication that none of us really foresaw what was about to happen. On Sunday 8th March 2020, I stood in the Church at a pre-First Communion mass with a group of parent friends, speculating about this virus that we assumed was millions of miles away.

Four days later, Leo plunged us into lockdown, and the rest is history.

You know all this. I just wonder is anyone else where I am now. I feel exhausted, absolutely worn out. Like my daughter who is waiting in anticipation of Santa, I’ve been a good girl. I’ve done everything I’ve been asked. I’ve barely been anywhere in two years. Being captive in my own house, I willingly got involved in many activist groups (namely with ILMI, which I loved), and I gathered a collection of activists’ stories, which kept my mind from wandering into dangerous places. At first it was just for fun, but I never was one for doing things by half. I refused to acknowledge the glaring warning signs of burnout.

And I’m sure burnout is a common phenomenon. I’d imagine that those in the medical profession, who quickly discovered the meaning of the word “vocation” would scoff at the rest of us using that word. But that’s how I feel right now-completely burned out. I’ve written many times about how writing is my go-to tool in times of mental distress, but it is incredibly difficult to be in a creative mindset when the media is constantly reminding you that just as we get a handle on this pandemic malarkey, things change again. If you turn off your notifications, your partner or someone you randomly meet in town is always willing to bring up the dreaded “C” word.

To be honest with you, I’m at the point now where I would gladly shut out the world for a while and chill watching telly all day in my pyjamas. I’d love to remove myself to somewhere remote with a stack of books and read, write and sleep without interruption. I’d love to be on a train to Dublin for no other reason than to meet friends, eat good food and talk shite before heading into the city to look around the shops and buy unnecessary shite. I could still do this if I wanted to, I suppose, but it’s not the same. There’s always that undercurrent of fear. It’s not difficult to see why the so-called “conspiracy theorists” become so annoyed at the mention of restrictions. Some of these restrictions don’t even make sense. Mixed messages from the media, it’s all enough to make your head melt.

And the pandemic isn’t the only thing occupying our minds. We’re still working, raising our kids, caring for loved ones. We’re still experiencing the everyday drudgeries of life: bills, sickness, bereavements. It hasn’t been an easy time. So if you feel exhausted right now, I reckon that sounds about right. 

And if you feel this way, you are not alone. This cursed pandemic is far from over, but I say it’s time to indulge in some serious self-care. Turn off the news, turn off your phone, take a deep breath and go easy on yourself. 

We need to look after ourselves, and each other now.

Institutionalised

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I am eight years old. My parents are in the front of the car, I’m in the back. I’m the only one of my siblings who is being spoiled with one of these many trips to Dublin. They want to look at me again, to bend my legs back and forth, to mock me by “testing” the strength in my arms. At least it’s a day off school, I suppose, a day free from being reminded that unlike my classmates, I can’t knit. I can’t run. I am not like the others. The others don’t make these trips to Dublin.

I am outside a brown building. Coming out of the automatic doors is a little boy, around my age. He is wearing exaggerated metal splints around his stick-thin legs and walking like a tin man. He stands out, he’s too obvious; he might as well be wearing a bell and shouting “leprosy!” I’ve been threatened with these splints a number of times. A punishment for my legs, for not cooperating. Inside, I am stripped down, exposed. The experts stick markers to my legs and calls them diamonds. Then I walk and walk and walk. I am tired, but I am told to keep going. Push that body. Don’t let it defeat you.

Now I’m ten. We’re staying with my aunt in Belfast. Well, mum and I are staying here. We’ve been coming up and down for weeks, going to the Musgrave Park Hospital. I wear the special markers again and the computer shows the doctors how my muscles move. I walk up and down and up and down. The doctors tell me I am a supermodel, and it must be true, because only supermodels could have their bodies scrutinised and discussed at every angle. They’re recommending botox to loosen my muscles, so I can walk better. Mum tries to make a joke of it, saying that she would love botox. Perhaps, after all this time, this botox will make my life better. Yes, this is the miracle cure I’ve been waiting on since forever. After waiting in a hospital bed for what feels like days, they give me the injection to the back of my right calf, and I am disappointed. Surely to be made normal, I must be ripped apart and sewn back at the seams?

I’m fourteen. To appease my mother I’ve gone into respite, knowing that in spite of her insistence, I won’t enjoy it one bit. I wake up on the first morning to find a nurse, evidently bored on the night shift, unpacking my things. I’m angry, yet I don’t interrupt. There’s no point: she won’t understand my anger. Instead I lie there, silently watching her as she judges my clothes, raises her eyebrows at the sweets my mum packed me. She checks every corner of my suitcase. I feel invaded, but I’m not sure if I am justified in this. Maybe this is just something we disabled people have to put up with. I don’t like it one bit.

Transition Year and one month off my seventeenth birthday. I’ve written a play, and the year head has agreed to allow the drama teacher and I to produce and direct it. This is the beginning of a blossoming writing career. I have so much to do, but I am not in school. Instead I am in Dun Laoghaire, the NRH to be exact.  I am to get two weeks’ intensive physio-, speech- and occupational therapy. Have I any idea how lucky I am? I’m only in TY, I’m told. I won’t miss much. I am put on the children’s ward. The girl in the bed next to me is called Stephanie. She becomes breathless when she tries to talk, but she is sweet. She’s also frighteningly institutionalised. She is my age and has been here a few months, but has already forgotten what life outside is like. The happiest part of her week is when one of the nurses does her nails. Life here is regimented. On the first day I wake up looking for a shower, and I’m told that showers are not an everyday thing. Instead I am presented with a basin of soapy water and told to wash myself. On my days to shower, despite my insistence that I can manage, I am told that it is unsafe for me to shower alone. I have to tolerate a stranger touching me, seeing my bits and pieces (“nothing we haven’t seen before” they say cheerily)  as I am scrubbed much like a horse might be. The nurses laugh at my embarrassment. Typical teenager. But I am not a typical teenager. If that were true, I would be in my home economics class, not here. We go to bed with a video at half eight. I haven’t gone to bed this early since I was eleven. It’s not really an opportunity to rest, either: people need to be turned and toileted during the night, sometimes people cry out for assistance. I am only here for two weeks, but the memory of it will last a lifetime. They prescribe lots of physio. Even now, at thirty-five, I still do it. It’s good for me.

I’m still in Transition Year, back in the safety of my own routine in Tullamore. I’ve done work experience in the Tullamore Tribune, and my play is about to go live to an audience of four hundred people over two nights. It feels surreal; it’s what I’ve always wanted, and yet I feel like I’m on the outside looking in. I also feel exposed, as these characters are based on real-life people that I know and love. I also feel immensely proud and validated that my teachers trusted me with the task of writing and producing this play. In a parallel universe, we have to visit the National Learning Network as part of the “Community Care” module.  It’s an alternative to college for disabled people, people like me. As I sit listening I recognise its merits, but I also find myself wondering whether there is more to life. Will I end up in a day care centre in my twenties, drinking tea and making idle chit-chat about the weather? The prospect terrifies me, though I don’t know why. In many ways it may be easier than the mainstream route, but I am stubborn. Too stubborn sometimes.

So I enter fifth year, still terrified. I am just another number, I tell myself. Nothing special about me. I’ve convinced myself that the only way to avoid that day care centre is to study. I resolve to get enough points to get into Trinity, although I have no idea what I’m going to do after I get my degree. I become fixated with this aim; it’s the only thing that keeps me going.  My life revolves around school. I stop eating, watching with satisfaction as my belly shrinks into nothing. I am normal, I tell myself. I don’t stop studying until after midnight every night. I silently cry my way through lessons, despising my own weakness. I am lonely, but I don’t have time to go out gallivanting at weekends. I have no choice. I must do this. The Leaving Cert nearly breaks me, but I conquer it. Great triumph over adversity story. I am going to Trinity.

Trinity is a different world. I am equal here. With the right supports in place, I blend into the background, silently struggling with imposter syndrome. I can’t compete with these genii who claim to have been reading Jane Austen since they were five. I struggle in silence. I got a scholarship to go here. If I ask for help, people might think that I’m a dumbass and kick me out. I’ve resolved to leave when I am compelled to confide everything in Orlaith and Declan, the disability officers. They tell me not to leave. They also confirm something that I have suspected my entire life: that there is nothing wrong with me and that we need to use our inner fire to eliminate barriers for disabled people. I shamefully tell them I broke my electric wheelchair by bringing it across Front Square, but they don’t berate me (much!!). Instead they insist that the solution is to build a level-access pathway across the cobbles. I start to think that if an institution as old and as steeped in history as Trinity College is can make such dramatic changes, then there is no excuse for the rest of the world not to make these changes too.

During my time at Trinity, I learn so much more than how to write a critical essay. I learn how to be independent, how to cook, how to work and pay my bills. Every morning I wake up, and know that I have choices. I don’t always make the right ones, and having that freedom to fail and learn from those mistakes is vital. For example, one month I spend my rent money on God knows what and have to spend the next few months eating cereal. A hard but important lesson! I leave Trinity with the second class honour that was so important to me, though now I can’t remember why. I don’t even have the Latin parchment on display, I think it’s in my attic somewhere. After I leave college, I have no idea what I’m going to do. I feel like I’m leaving part of myself on campus, but with the grey buildings and the beautiful campanile and the leafy trees and students in their dufflecoats, I forget I’m not in the real world. The real world is cruel and it reminds me of my place: outside it. I apply for hundreds of jobs, but I do not get called for a single interview. What was I thinking, I berate myself, nobody would want a useless cripple.

Eventually, I am thrown a lifeline and Offaly Centre for Independent Living offers me a job. Mum tells me she was happier when I got offered a six-month internship with HP, an experience which would’ve cost me more money than it was worth. But I am delighted, and I still look back on my time there with fondness. My job is ridiculously easy. It is the emotional toll that is harder. I learn all about independent living and equal rights only to discover that these are only theories and that in reality Independent living cannot be achieved. I witness people becoming afraid to ask for what they wanted as the focus shifts to what people need at a basic level. There’s no money, we are constantly told at staff meetings.  We need to prioritise services, get people out of bed. Nothing we can do about it, we are told. Things are tight at the moment. I am an upstart, a troublemaker. I am not cooperating. I find myself trapped in an institution of my own, the dark depths of my own mind. I think back to my own respite stays of my childhood and feel physically sick at the thought of them being a long term arrangement, for me or for anyone.

It bothers me, even now in my position of privilege – I live independently, in my own home, with my husband, daughter and naughty little puppy – that there are people out there who are incarcerated by circumstances not of their own making. Many are living in hospitals either because their own houses are not wheelchair accessible, or because there are not enough ‘community supports’ like home helps and Personal Assistants, and it annoys me. It annoys me because I know that I am lucky. It annoys me because I constantly feel that I have dodged a bullet. It bothers me to hear about disabled people who are ready and willing to contribute to our economy being stuck at home because only their personal care needs are being met. It infuriates me sometimes that I was naively led to believe that disabled people could ever be viewed as equal when the story on the ground, as well as the lived reality, seems to be disturbingly different.

Sometimes, I wish I didn’t care. That I could get on with my life and writing and ignore the many rights that are being denied to disabled people at the moment. I’m not trying to make myself out to be a martyr, I promise. All I’m saying is why must there always be barriers to break through, obstacles to overcome? Why do I say the same thing over and over again to the point where I’m nearly boring myself?

Because, dear reader, I know what the alternatives are. And I never want to become institutionalised, in body or mind. I reserve the right to live a life of my own choosing, and I’m lucky to be free to exercise that right.

I am getting older now. My body – my fabulously unpredictable body – is letting me down in ways it never did before. It is scary, and I know that it is partly my own fault. But this is my vessel. It will never be perfect, it cannot be fixed, and nor would I ever want it to be. This was the way I was made – not worse or better, just me – and after all these years, believing that makes me stronger than any physio regime ever could.

Short Story: On the Edge

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

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

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

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

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

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

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

Soon this pain would be over.

Soon she would be over.

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

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

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

‘Wild night to be out for a stroll.’

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

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

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

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

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

‘You ok?’ she asked, forgetting herself.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

‘How did you know?’

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

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

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

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

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

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

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

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

Dog tired

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Some nights… well, okay … most nights, instead of writing (or as I write) I end up having in-depth conversations with friends over Facebook messenger. Being somewhat of a social recluse when I’m in full-scale writing mode, I think of it as maintaining an important connection to the outside world. We discuss many things, sometimes work related, a bit of banter about upcoming holidays, things like that. And I wanted to share with you one of the things many of us seem to have in common:

We’re bloody tired.

When you’re an activist like many of my friends are, you don’t want to be seen as weak. You’ve spent your entire life fighting for equal rights and opportunities. The last thing you want is to be perceived as less than or worse still, as a moany crip. You know what I mean: someone who brings all of their struggles in life back to the fact that they have a disability or impairment. Someone who’s perceived to do nothing but complain.

I know many people with disabilities who have great careers, lovely families (like mine), are able to drive, maintain a home and, if they’re lucky, a career and maybe even a social life. This is merely a dream for many. Yet in conversation with my friends on a one-to-one basis, they share their deepest fears. Are they losing the physical ability to do the things they love, or will they do so in the future? Will they be able to live independently if Personal Assistance is not available? Will they be perceived to be lazy or passive if they can’t give everything they have, 100% of the time? If they stop fighting, will they lose everything?

I have written before about how I spent most of my life trying to fit in. I remember particularly my Leaving Certificate, and how, even if it killed me, I would get enough points to study in Trinity. I remember the lunacy of staying up until one in the morning, anxious to get no less than 80% in all my exams and essays. I knew I was capable of it, but I nearly paid the price of my mental sanity. But I was so determined not to be defined by my disability that in many ways I rejected it, refusing to believe that I was impaired in any way.

For years now I thought I have been a firm believer in the social model of disability, that it’s society that disables us. And I do believe this: a lack of available housing, accessible transport and personal assistance constantly threatens to deter us from achieving our true potential. However, the reality remains that until these issues are tackled in their entirety, we must try our best to adapt within a society that won’t adapt to our needs. It might mean taking up employment in an inaccessible building, or forgoing the opportunity of job promotions because we can’t afford to lose our medical cards. Maybe it means highlighting our weaknesses and shortcomings so that we can access vital services. Maybe it means languishing in a day centre so that we don’t have to face the deafening echoes of silence at home in our childhood bedrooms or a residential institution.

Sometimes it might mean plastering on a smile so that those around us don’t realise the amount of pain we are in, how exhausted we are or how much effort it took for us to get out of bed that very morning. Because giving any indication of how impairment affects us is a major sign of weakness, right? Isn’t it akin to saying, ‘well, I’m not really equal, and I don’t believe really that we live in a society that disables us? My impairment is my problem?’

No, people – no, this is not what this means. At. All!

The problem is that we live in a society that, when it comes to disability at least, we are brainwashed to believe that our shortcomings are somehow our own fault. For example, prior to being pregnant with Alison, I never used a rollator. In my mind, I never needed one but in reality I was probably constantly falling over. Two days after giving birth, after spending three weeks in a manual wheelchair, I was determined to start walking again, using the rollator at first and then eventually walking on my own as I did before I was pregnant. This was my ultimate goal and it would make me somehow less of a person, less of a mother even, if I didn’t meet this goal. Where was I getting these ridiculous ideas? Mirrored by a society with their stereotypical ideas of what a ‘proper’ or ‘strong’ mother should be? Incidentally, it’s been six years and I never did get to a place where I felt confident walking without the rollator. The medical model of my brain is saying ‘oh, it’s because you didn’t do your physio, you didn’t try hard enough.’ In contrast, the social model tells me that I’ll never be any good to anyone if I’m exhausted trying to do things that in reality don’t really bloody matter!

That’s why, when Alison was two-and-a-half, I decided to get an electric wheelchair. I wanted to be able to bring her for walks in the park, down the canal, walk her to school like a proper mummy. Yet, although I know it’s true that the wheelchair gives me so much more independence, social conditioning sometimes makes me doubt my own judgement. It’s been drummed into me that physical ability, including the ability to walk (which many don’t have) is something which must be used at all times. On the other hand, if I didn’t have it, I would probably not be able to write this blog, have the energy to spend on playing with my daughter or to sit on the committees that I sit on now.

I guess what I’m saying, especially to my friends – those who I’ve spoken to about this at length – is that we need to stop measuring our worth and instead start challenging the ableist society we live in. Can’t hold down a full-time job, or are you struggling to keep up in education? Can’t seem to source a suitable place to live? Perhaps it’s because you’re competing without reasonable accommodations, which isn’t really a level playing field. I’m not saying play the ‘disability card’ and roll over and do nothing with your life, but of course you’re tired. You’ve been trying to claim your rightful place in society for a long time.

So take stock, take some rest and put the fighting gear back on, because the battle isn’t over yet. And take solace in the fact that you are definitely not fighting alone.

PS I apologise for the crappy quality of writing in this blog, but guess what? I’m tired!