Thursday Thoughts: All in My Head

(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

(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.