Eight Things I’ve Learned About Chronic Pain

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Religious followers of this blog will know that I’ve experienced chronic pain in my sciatic area for the last five years. I noticed it after a particularly nasty fall in the back garden in 2020 but only became concerned when, six months after the fall, the pain hadn’t subsided. Since then, it’s been a rollercoaster of medical appointments, of being told it was sciatica, muscle spasms, periformis syndrome and many other things. And, of course, one medic had the gall to suggest I was imagining it, that it couldn’t possibly be as bad as I was saying (apparently, I like lying in bed every night, doing stretches at half three in the morning for the craic.)

My birthday was in April, and to celebrate I was gifted an unexpected diagnosis. After years of plaguing her, my doctor, who believed me from day one, ordered a hip x-ray. Now, I wasn’t expecting anything to come of it, but three days later, she phoned me to say that there was significant wear and tear in my right hip, and that the results could pinpoint exactly what’s causing the pain. At first, I was stunned, and a little annoyed with myself. Had I done this to myself? Since then, I’ve spoken to so many people who have arthritis too, and the majority of them struggle to articulate just how debilitating this pain can be.

Having Cerebral Palsy is not a big deal, because I’ve never not had it. However, as I get older, I find that I have aches and niggles I’ve never had before. Adapting to having CP comes naturally, as there’s never been a time when I didn’t have it, but chronic pain, although it’s kind of connected to the CP, has been a bit more of a learning curve. Here’s what I’ve learned about having this new CP (although a Google search told me some of the same things, I’m more into learning the hard way).

  1. Chronic Pain is not your fault:

    Admittedly, I naturally walk with my leg turned in, but despite appearances, I do try to walk as straight as I can. It took me a long time to acknowledge and recognise that chronic pain is not a punishment, and that being hard on myself was not going to change it. Sometimes you can do everything right and still end up in pain. This leads me to my second point…

  2. Physical pain can lead to crappy mental health:

    Being in pain is exhausting. I’ve finally succumbed to taking pain medication at night so that I can sleep, but on days where I’m in pain and tired from a poor night’s sleep, the world becomes a dark place. Even the simplest tasks become laborious and time-consuming. Your brain lies to you, telling you that you are useless, a burden. This can lead to feelings of failure and inadequacy. Therefore –

  3. Pain management must come first in your priorities:

    It doesn’t matter how busy you think you are. If you skip the physio, neglect to slap on the TENS machine or push through without the medication, chances are you won’t be able to do what you need to do anyway. In order to be your best self, you need to take control over your pain management. Eat well, drink your water, and rest when you need to.

  4. Pacing is not a dirty word:

    I continually fight this one. After all, we live in a society where “being busy” is seen as a badge of honour. I tend to get overexcited when I have a pain-free day, and I run around the house like a lunatic, scrubbing bathrooms and hoovering only to be left in agony for days after. I think what you’re supposed to do is prioritise tasks and do them at your own pace, with plenty of rest in between. I’ll keep working on it!

  5. Pain can be lonely:

    Most of us don’t want to be seen to constantly complain. As a result, I often find myself withdrawing from activities and meetings that I once enjoyed. I don’t like telling the same story, over and over. Sometimes, I don’t have the energy to be social, and I end up watching Netflix in binges when I could be meeting people out of the house, and this only heightens my inner shame and sense of failure. However, it’s also important to remember –

  6. You are not alone:

    When I eventually found the courage to talk about the impact that being in pain was having on my physical and mental health, I was surprised to hear that so many of my friends were also wrestling with pain, and as long as I don’t fall into a pit of self-pity, I can support and be supported by those who love me most. Many people experience chronic pain, with diagnoses like fibromyalgia. Sometimes people are not believed, but this experience does not make your pain any less real. Thousands of people are in the same boat – take some comfort in this.

  7. A bad day does not mean a bad life:

    I’m having a bad day today; I cannot shake the tiredness and this is slowing me down. It’s frustrating, especially since, in my mind at least, I have nothing to be tired about; no job to go to (hoping that will change soon), no toddlers, and not nearly as much writing being done as I’d like. However, I must admit that I have good days too, especially those spent with family and friends, and that overall, I’ve achieved a lot. Parenting a teenager is not for the faint hearted!

  8. Wheelchairs and walking aids have no moral value:

    Over the years, I’ve heard people saying that they want to be able to walk without aids. My thing is that I’d like to walk more with my rollator, as I did before my hip started giving me trouble. Some days I manage, and some days I can barely stand. My pain and energy levels vary. What doesn’t vary are my duties as wife, mother, and writer. I do get some invaluable help, but overall, meals still need cooked, laundry done, dogs walked. My wheelchair enables me to carry out these duties. I am not lazy; in fact, I am trying to stay as independent as possible.

    Phew! If you made it this far, thank you. I only hope that it helps someone who needs it, whether you’re experiencing chronic pain yourself, or a loved one is. Now, if you’ll excuse me, I’m going to stretch and pray for a good night’s sleep afterwards.

The H Bomb

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Trigger warning: This blog uses the word handicap which may be triggering for some readers.

Having a thirteen-year-old daughter is tricky. She’s constantly pushing for more independence, and her friends are the most important things in her world right now. So, whenever she agrees to spend time with me, I grab it with both hands. Last week, I planned an impromptu trip to Dublin, just for a wander. We were at the Jump Juice counter in the Ilac Centre on Henry Street, and I’d just ordered when, in the corner of my eye, I noticed Alison storming away without me.

“Hey! Where you going?” I grabbed her arm and she swung back around to me.

“That lady called you a smelly handicap.”

“Eh? How do you know that?”

“I heard her. She said ‘oh, I wouldn’t go near that smelly handicap.’ So I thought I’d follow her and punch her lights out.”

A large part of me brimmed with pride. Alison is embarrassed by me, because I am her mum, and cool teenagers are not supposed to admit that they have parents, and certainly not “special” parents. Yet, she was willing to throw herself in front of me to protect me from attack. Little did she know she’d picked up a sword to join so many of us in an ongoing battle to be recognised as equals – God, to merely exist.

I first heard the word “handicap” before I started primary school. Mum spent hours nattering on the phone to her golfing buddies, going on about pars and handicaps. She’d naively hoped that I’d always be oblivious to the negative connotations – the shadow of “cripples” begging during the Middle Ages, “hand in cap”, their survival dependent on the generosity of others. She could have warned me that people would call me names, or that they wouldn’t accept me, but I might not have believed her. I never got any special treatment at home; my favourite expression from my childhood is “No disability will ever excuse you from emptying the dishwasher.” My parents always expected me to do my best at everything I did. But the other side of that was that they taught me that I did not deserve to be treated less favourably. It was not okay to be othered, and to tolerate it was to show people that I deserved this treatment. They encouraged me to speak up for myself.

Granted, having been born a chatterbox, I’m not sure how much encouragement I needed. In first year of secondary school, I was advised that I would not be allowed to partake in PE, or the practical elements of Home Economics. After attempting the basketball drills, I conceded with the PE teachers, Ms Ganly and Ms Healy, that I was probably better off sitting the classes out, but I really wanted to do Home Economics. What I saw was the probability of having to do meal prep in the future; there was little doubt in my mind that I would someday live independently. What my teachers saw, I imagine, was a wobbly girl with shaky hands dancing around boiling pots and sharp knives. In fifth year, I told the teacher, with all the confidence I could muster, that I would be doing Home Economics and partaking in the cooking elements. By this stage, I was already cooking lasagne and pasta dishes at home every week anyway. Impressed (or frightened) by my insistence, she agreed. Soon this smelly handicap was bringing home dinner from school for the family every Thursday evening. The Chinese stir fry was a particular favourite, and now it’s one of Alison’s favourite dinners, too!

But hearing the words “smelly handicap,” thirty-six years after hearing it for the first time, made me feel sad. Like many of my disabled family, I have always fought to dismantle the man-made, societal barriers that block me from accessing my true potential. Yet hearing the word “handicap” the other day brought to mind early Junior Infant days when I, having just learned how to walk, used to meander towards the toilets, and the kids in the older classes would dig each other in the ribs and walk beside me, as if they were trying to trip themselves up. Now, I had no concept of walking any differently, so thankfully the other kids were around to tell me. My friend Peter pointed out to me that, like me, he did not know he had Cerebral Palsy until it was pointed out to him. In fact, he told me, Cerebral Palsy (CP) was initially named “Little’s Disease,” so-called after the doctor who “discovered” it for the first time.  However, Peter pointed out, CP has always existed, alongside many other conditions and impairments, and this fact remains constant throughout the ages. What has evolved (a little) is how we label and consequently perceive and treat disabled people.

For me, hearing the word “handicap” throws me back to a time when I believed there was something wrong with me, and that I had to justify my place in the world. I spent my teen years believing I was not good enough, despite the academic results showing me otherwise. Going to Trinity and seeing how many resources they put in place to enable me to live independently, offered me a valuable perspective I’d never considered before. Learning that I was not a burden lifted a weight of responsibility from me that I hadn’t known that I’d been carrying. 

However, whether we like it or not, our experience of life colours our outlook. And even though, from an outsider’s viewpoint at least, I’ve achieved great things – a university degree, a job, marriage, our child – all of these blessings were underpinned by an inner belief that I didn’t deserve them, that I was just an imposter, waiting to be unmasked.

I’ve written about internalised oppression before, and my stance remains unchanged: I think it is one of the toughest barriers to true equality for disabled people. All our lives, we are constantly told, by a society that purports to know better, what we can and cannot do. We are told that we are a burden. We watch as those who tend to our needs, family members who we crave a relationship with on an equal basis, become burnt out. The dynamic shifts; we cannot possibly ever be equal in that position. People pity family carers, yet the governments still fails to understand that when our human rights are granted, pressure on those who love us also eases.

No parent should ever vocalise a wish to die before their children do. This has been an issue for decades, and the discussion is always the same. In order for the lives of disabled people to improve in a meaningful way, the government must commit to taking a rights-based approach. The government must change how disability is framed in our society. This won’t come naturally to a government that left an eleven year gap between signing up for the United Nations Convention on the Rights of People with Disabilities (UNCRPD) and its ratification. There’s always a great deal of conversation around the provision of disability services, but the government rarely address groups of disabled people themselves (or Disabled Persons Organisations, also known as DPOs) in making these provisions.

And I cannot help but wonder if it’s this lingering culture of seeing us as “other,” as those “smelly handicaps”, that prevents us from being seen as equals. Othering us makes it easier to deny our rights, to keep us separate from the mainstream. If you have not experienced this “othering”, you cannot imagine the effort it takes to try and come across as “normal”. How we sometimes try to hide the “unsavoury” realities of our impairments in the hope it leads to acceptance. How frightening it can be to ask for assistance, personal or technological, for fear that such a request may lead us to be seen as incapable. Kudos where it’s due: many aspects of our towns and cities are becoming more accessible to people with all kinds of impairments. Disability awareness training seems to be more commonplace.

However, until our human rights are truly recognised and met, the legacy of the “smelly handicap” will always be hiding around the corner, ready to take us by surprise.

Wednesday Wonderings: Five Years Ago Today, the World Shut Down

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Today marks five years since the first Covid-19 lockdown in Ireland was announced by An Taoiseach, Mr Leo Varadkar, on 12 March 2020. Five years on, I’ve been reflecting on the surreal events that unfolded afterwards. Although everything is now back to normal, and many things are “as they were” before restrictions were announced, part of me cannot help but wonder whether as a society, we have collectively dealt with the psychological, emotional and economical impact of that uncertain period, which was followed swiftly by events that continue to unfold in Ukraine and Russia.

It was my good friend Shelly and late friend Leigh who first alerted me into thinking that this emerging virus in China was something to be worried about. I read back some of our group chats from late January/February 2020, and shake my head as I am reminded how the three of us tried to pre-empt what would happen next. I predicted that they might have to shut the schools for a few weeks, while efforts would be made to contain the virus. No-one could imagine the chaos that unfolded during the following weeks and months.

On the morning of 12 March 2020, while everyone around me was stocking up on tinned goods or toilet roll, I remember walking around Dunnes Stores looking for a nice Easter Egg for Alison.  I remember that I bought a few groceries as well, but I didn’t know what to buy. I just bought two bags of pasta and some noodles, along with four bars of soap (the pumped bottles were already sold out), while looking at people’s heaped trollies around me. The Easter egg was my priority. I could sense that Alison was going to lose so much in the coming weeks; she didn’t need to lose the Easter bunny as well.

Afterwards, I came home, feeling sick to my stomach. Despite being an avid reader of dystopian fiction, I didn’t know how I was going to deal with this uncertainty, nor how I was going to guide my eight-year-old daughter through it. That day, in an effort to distract myself more than being worried about my child’s education, I printed off a large number of worksheets from an educational website, thinking that if the world was about to be thrown into chaos and unpredictability, that it would be best to try and create some semblance of routine for the sprog.

That afternoon, when Alison came home from school, she’d just been informed that school was to be closed for two weeks, but even at the age of eight, she was clever enough to know that it would likely be longer. She asked so many questions, and for the first time in our lives, we had no answers. We sat watching the news as Leo Varadkar announced the lockdowns. John Paul had just started a career break, and I remember the relief that he would not be working and exposing himself to the virus. I became institutionalised very quickly, accepting isolation as the way things had to be. Like millions of us, I threw myself into work and homeschooling in to keep busy, trying to suppress my nervousness at the uncertainty around me. (What are the psychological effects of this now, I wonder?)

The world was thrown into autopilot, and slight lunacy. It became an offence to meet up with others, to take a drive into the mountains or to the beach, or to travel further than a 2km range from your home. Only one person could go shopping from a family at any given time. We had to mask up and keep our distance from those we loved, not only for two weeks, but for the guts of eighteen months. Hugging a friend was seen to be first degree murder. The message was, do you want your granny to die, all because you couldn’t resist giving your loved one a quick cuddle in the supermarket? What long-term effect is this messaging still having on people, especially children? 

In July 2020, Alison attended a socially-distanced drama summer camp in the local youth centre. I was apprehensive, but more concerned about my only child becoming too isolated from other children. After the second day, her drama facilitator messaged me to say that my eight-year-old daughter had told her that she had predicted the coronavirus pandemic, that she’d had a dream the week before restrictions announced that told her that something bad was going to happen in the world, and because she hadn’t told anyone she believed, essentially, that she was to blame for the entire pandemic. My heart turned to ribbons as I thought of the psychological burden that my little girl was carrying This is the unspoken impact of the OTT messaging behind the pandemic. We, her parents, were stunned as we explained, repeatedly, the scientific reasoning behind it. It took a long time to convince her, and even now, I see the damage that carrying that awful “secret” did to her.

Nobody in their right minds would ever want to return to those dark days of lockdown, although I will admit that it took me a long time to regain the confidence to put myself back out there and claim my life back. I became institutionalised in the safety of my home, going from somebody who went to Dublin at least twice a month, just because, to someone who didn’t go anywhere, until last year. 

We’ve had a rough few years that we simply have not been allowed to collectively recover from: COVID, the Ukraine-Russian conflict, economic instability, and now fecken Trump, so as we reflect on five years since the lockdowns were announced, we must remember that we have been through a great deal of collective trauma, and to give ourselves a break. And to congratulate ourselves, too, for doing our best in such unprecedented circumstances. 

Review: Dara O’Briain’s “Recreation” and the StayCity Aparthotel

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It’s been a week since John Paul’s birthday, and what better way to celebrate than enjoying his Christmas present? Yes, reader, you’ve read correctly: for Christmas, I got JP tickets to see his all-time favourite comedian, Dara O’Briain, in Vicar Street. It’s been JP’s ambition to see the man himself live since those poverty-filled weekends of 2008, when we couldn’t afford to go out and we sat in watching Dara O’Briain’s comedy DVD on repeat. Almost a fortnight ago, on Friday 28 February, we crossed that from our bucket lists, marking both our first time to see the comedian live, and my first time in Vicar Street.

Now, I’d never been to Vicar Street before, but was delighted to find a limited number of accessible tickets online (If you’re a wheelchair user, I suggest booking early to avoid disappointment). We travelled from Tullamore to Dublin via train, and I prebooked a wheelchair accessible taxi in advance on the FreeNow app, an act that felt like a game of Russian roulette. I will say that although I booked the taxi on the Tuesday, four days beforehand, my driver and vehicle was only confirmed a few minutes before arrival, and as the driver hadn’t specified where to meet, we had a fun impromptu game of Find the Taxi Driver. Nonetheless, he was very helpful and I marvelled at how easy the process was. Booking an accessible taxi in an urban (not city) area can be impossible, even with all the advance notice in the world. And if you use the FreeNow app, the fare can be deducted from your debit/credit card, meaning no fumbling with wallets as you are getting out of the taxi.

When I initially booked the StayCity Aparthotel, I was wary despite the high ratings left by previous guests. The StayCity is located around the corner from Vicar Street, which is crucial if, like me, you happen to be directionally challenged. I was expecting a basic hostel setup, and in many ways, it is basic; there are no frills. However, it was exactly what we needed. The accessible apartment was spacious yet cosy, with a wooden floor in the bedroom-cum-kitchenette and non-slip tiles in the roomy ensuite. The bed was at a comfortable height for a wheelchair user to transfer onto, unlike some other hotel beds that I’ve found to be too high. The bathroom was well equipped with plenty of handrails (blue for contrast of colour), two emergency cords (one beside the toilet, the other in the shower), and a good-sized sink with a long mirror and space for the wheelchair underneath. 

Having freshened up, it was time for the gig itself. Vicar Street is known as the perfect venue for comedy shows. We entered Vicar Street via the back entrance, where the staff were helpful and courteous. The bar area, which is right in front of the theatre entrance, is laid back and intimate also. While I loved this aspect of it, it fell on JP to order drinks as the bar is quite high.  The room itself was slightly bigger than I expected, but tables are quite close together, creating that feel of togetherness and comraderie among the crowd. I should at this point mention that, as far as I could make out, there are only four tables in the entire room suitable for wheelchair users, and each table is located in a corner of the room. This would have an impact on how many wheelchair users could attend any one gig. However, the atmosphere was cosy, with everyone giddy to see the show. 

Finally, when Dara took to the stage, suffice to say he didn’t disappoint. He is a fascinating mix of experienced seanchaí, dramatic actor and that neighbour you’ve said “good morning” to as long as you can remember. He’s quick-witted and razor-sharp, baiting and successfully reeling in front-row audience members into his quirky anecdotes. However, Dara’s set is far from a series of gimmicky stories. Like any great writer/entertainer, he bares his naked soul to the audience as he relates, in an honest and touching way, the whirlwind journey behind his search for his birth parents. We, the audience, experienced that journey with him, the dizzying highs and the crushing blows. Dara allowed us into his heart in the same way that everyone watching that night welcomed him into ours.  

In a turbulent world riddled with uncertainty, comedy is more important than ever before. I wanted to share this piece with you, as a wheelchair user who’d always assumed that attending a Vicar Street gig would be too awkward. I would highly recommend staying in the StayCity Aparthotel and reserving the accessible room (we paid €140 for bed and breakfast, where we would have been stung for €200+ elsewhere). The combination of decent, affordable accommodation, with its location near Vicar Street, made for an enjoyable, relaxing evening.

Remembering the Father and Mother of the Independent Living Movement

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Judy Heumann and Ed Roberts are both recognised as prominent figures in the international Independent Living Movement. It is remarkable to think that two complete strangers from opposite ends of the United States would come together to spearhead what would evolve into an International Disability Rights Movement. This month, as we mark the anniversaries of their passings (Judy – 4 March 2022; Ed – 14 March 1995), I find myself reflecting on how the actions of these two individuals led to the formation of an army (in modern terms, a collective), that fought for equal rights for disabled people worldwide.

When I first started working with Offaly Centre for Independent Living in 2008, my first assignment was to research and understand the origins of the Independent Living Movement. I knew about Personal Assistance, but nothing about the existence of a civil rights movement for disabled people. I also knew about Rosa Parks’ refusal to give up her seat on the bus, but I’d never heard about the feisty New Yorker, Judy Heumann, who led a demonstration shutting down the streets of New York, before orchestrating what would become known as the “504 sit-in”. Nor had I heard of a young Californian called Ed Roberts who conquered his self-pity and established the first Center for Independent Living, after setting up an informal team of assistants that helped him live independently while he studied at the University of California in Berkeley.

Ed and Judy (I refer to them by their first names as I think of them as comrades or allies, not faraway idols) are often referred to as the Father and Mother of the Independent Living Movement. Both had polio, but Ed had acquired polio later in life, at the age of fourteen, and so he perceived himself differently to how Judy did – his journey to self – acceptance saw him transform from “helpless cripple” into a “star”, whereas Judy says in her autobiography, Being Heumann, that she always believed that she had a right to exist on an equal basis with others. Ed was also more significantly impaired than Judy, and one of the obstacles to his attending university was finding somewhere that could accommodate the 800lb lung he slept in at night. Ed was the first wheelchair user to attend the University of California and eventually, he was offered a wing of Cowell Hospital, the on-campus hospital, which he accepted with the caveat that he could treat it as a dorm, not a medical facility, with the same freedoms that non-disabled students enjoyed.

The establishment of the first Center for Independent Living in 1972, led by Ed and a group of disabled University of California students who dubbed themselves the Rolling Quads, marked the beginning of a battle for disabled people to have their civil rights recognised. By sharing their experiences and witnessing the nitty-gritty of each other’s lives, they formed a strong bond among themselves based on a mutual desire to enjoy a better quality of life, as equal citizens in America. Progress proved slow. In 1973, the Rehabilitation Act was passed, but Section 504 – which rendered it illegal for state-funded services to discriminate against persons on the basis of disability – was vetoed. Age-old excuses of cost of adaptations were trotted out as valid reasons to not sign the regulations, so passing the Act was merely paying lip service to equality for disabled people. 

By 1977, a frustrated Judy had had enough. In her eyes, and the eyes of her supporters and fellow activists, sitting around waiting for something drastic to happen was time wasted. Using her experience of successfully suing the State of New York for denying her a teaching licence as she was perceived to be a fire hazard, Judy and what was referred to at the time as an “army of the handicapped” gained access to and refused to leave the offices of Health, Welfare and Education in San Francisco. Judy was highly organised, and soon various committees had been established to organise food and bedding, as well as entertainment. Nonetheless, the physical impact of sleeping on mattresses on the floor was roughly felt by many protestors, many of whom developed bedsores. Despite this, it seemed that the protestors in San Francisco knew that there was too much at stake to back down.

In the later stages of the sit-in, Evan White, a news reporter, had amassed an impressive amount of footage of the protests. He described his jubilance at having the honour of sitting in during “meetings of strategy” with disabled protestors, as Judy led long meetings with fellow protestors every evening that often lasted into the wee morning hours. Everyone was given a say, and a job to do. By a stroke of luck, a nationwide television strike enabled Evan’s recorded reports to become front and centre of the country’s viewing schedule. This worried Califano more than the sit-ins themselves; it had the potential to damage his public image as a politician. On the twenty-fourth day of the sit-in, Section 504 was signed, a feat that was achieved by the will and determination of a strong collective of disabled people. (If you want to find out more about this sit-in, I recommend watching the award-winning Crip Camp on Netflix). 

Indeed, if we as activists can learn anything from Ed and Judy, it is that disabled people working together is the best way to attain our human rights. Having experienced discrimination and exclusion firsthand, we know best what we need. Although our lives are better than they were fifty years ago, we still battle to hold onto those hard-won rights that activists such as Ed and Judy, and here in Ireland, that Martin Naughton, Michael McCabe, Dermot Walsh, Ursula Hegarty and so many others fought for us to have. We must also come to accept that we work best as a collective. Nothing will change if we wallow in self-pity. Instead, we must use our experiences to make a better, more inclusive future for all of us. We owe it to Judy and Ed, and we owe it to ourselves, to never settle for a lesser life than the one we aspire to.

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.