Tag Archives: wheelchair

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: 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.

A Wheely Wise Decision

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(Don’t worry, I’m groaning at the awful pun. too).

Three weeks ago, I finally reached my breaking point. It had been coming for a while, and I had dodged it successfully all this time, but I couldn’t avoid it any longer. I had been awake with pain for two nights in a row, and was so painfully tired that I thought I would vomit. I actually did no less than ten Covid antigen tests, thinking that there was another explanation. There wasn’t.

I was just tired. Tired of pretending that my pain didn’t affect me. Tired of trying to keep myself mobile, without having the energy to do anything else. I hadn’t written anything in days, and consequently I was snapping at my daughter over the slightest thing. I was crying at the smallest, insignificant inconvenience. Three weeks ago, I’d had enough, and so I sat at my laptop and opened the pinned tab that had been saved since October, and I said fuck it, and I bought the wheelchair that I’d been himming and hawing over since I received my long-term pain diagnosis in November.

Then I cried. Big, ugly, wailing tears. What had I done? Was I admitting defeat? Holding up my hands and saying that I was giving up hope of getting my mobility back? I wondered what my mum and dad would think, after all my years of physiotherapy and cycling to school. I only started to use a wheelchair in my twenties. Would they be disappointed, or would they understand?

When I calmed down and thought about it rationally, I knew my parents wouldn’t mind as long as I was happy (besides which, I’m almost thirty-nine, so I have to stop worrying about what they, and indeed other people, think). And I also had to consider my priorities. I need to write more than what I’m currently producing, and I also need to look after my family, physically and mentally. I won’t be able to achieve any of this if I am exhausted. Those I love deserve better – hell, I do, too. For too long, I have been obsessed with proving my worth, a worth tied up in the traditional mantra of lots of output and productiveness. But even a machine cannot work to its full potential if its parts aren’t working properly.

I’m not a machine, I’m a person. And the wheelchair isn’t a part of me – it’s a tool.

The wheelchair arrived at last on Monday morning, in a big cardboard box. Initially, I was going to put the box straight into the spare room, but my husband stopped me.

“You’ve not spent all that money on a wheelchair just to have it gathering dust,” he said, hauling the box into the kitchen. 

After unboxing the wheelchair, I realised that I was looking at the answer to many of my problems. I tested it out around the house, leaving the footplates off so that I could propel it with my feet. It’s light, and for me, it’s far easier than trying to use an electric chair in our house, as I’d been doing on and off for the last three months. Today (Wednesday) marks day three of using the manual wheelchair, and since Monday, I’ve done four loads of laundry, written this blog and added 1,500 words to my novel, prepped meals and swept floors. And I’m still wrecked, but at least now I’ve something to show for it, which wasn’t the case this day last week.

Photo shows a lovely blue manual wheelchair, sans footplates.

Cerebral Palsy is not progressive. However, years of unsteady gait, falls, kneeling on the floor, and pushing ourselves to do things that our bodies were simply not made to do are bound to take a physical toll. You might have noticed that I’ve had a hard time accepting this. And as a dear friend pointed out to me recently, I shouldn’t. I’ve always been fiercely independent, and deciding to use a wheelchair more often will only enhance that. Less falls will lead to less pain. It might even lend me the energy and impetus to get back on my exercise bike, and hopefully onto my tricycle in the summer. My friend’s tough love approach has prompted me to focus on the future with excitement and hope (although if she reminds me again that I am pushing forty, she may get a clip around the ear).

Today (1 March) is International Wheelchair Day (which I didn’t know was a thing until this morning, but is quite timely, all things considered), a day for reflecting on and celebrating the positive impact that wheelchairs have on the people who use them (it is estimated that over 40,000 people in Ireland alone use wheelchairs either full or part-time). It is also worth remembering that the barriers that wheelchair users encounter – steps, inaccessible buildings, undipped footpaths – can all be fixed in order to promote inclusion for us all. And although we have made great progress, there are always improvements that could be made to ensure that services and amenities are accessible to everyone.

There you have it, my first blog in months, all thanks to me using my shiny new wheelchair to conserve my energy. Now off I go to tidy my kitchen, make some dinner and hang up some clothes.

Wheel Independence

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wheelchair.JPG

My poor, sad, neglected wheelchair (sad face)

 

 

I have really missed blogging here for the last two weeks (I’m back, yay), but to be honest, I just needed a break. I felt wiped, depleted and I know from hard  experience that when I feel like this it’s better to take a breather rather than having a meltdown and sobbing in my jammies at the side of the canal at 4.30am (ahem, apparently). I have been busy though with activism, and I got my submission in to Date With An Agent (I hope – I never enclosed an SAE to acknowledge my entry but I know my  future award winning novel will totally be selected), so that could account for why I’m that little bit more tired.

Or maybe it’s because for the last month and a half, I’ve been without my electric wheelchair, and the extra physical effort of walking everywhere is taking its toll. And thank God it is finally getting fixed tomorrow, because I am wiped.

My dear mother, who spent the first five years of my life doing physio with me every morning, was dead set against me using a wheelchair. We lived in a two-storey house when most of my disabled friends lived in bungalows. She wasn’t too keen on me having a wheelchair in college, although she understood the reasoning behind it. Growing up in a mainstream world led me to believe that one’s value was largely based on their physical ability to do things and to get around.

When I had Alison, my friend advised me that I wouldn’t want to miss out on doing things with my daughter, and so I got myself an electric wheelchair. Being ambulant I don’t think I’d have any chance getting one off the HSE. And for the first time since becoming a mother, I wasn’t housebound. I could take Alison for walks whenever I wanted, long walks and still have the energy to come home and do some housewifey things, and write my masterpiece. This is why the phrase ‘confined to a wheelchair’ annoys me so much. A wheelchair doesn’t confine, it liberates! Without it, I feel confined, trapped within the limitations of my body.

I firmly believe that when we are given access to tools like wheelchairs, technological aids and Personal Assistance, we are enabled to become the best us we can be. There is great strength in acknowledging that your physical impairments are not the problem, that society needs to address the needs of people with disabilities and be more inclusive. Above all, I believe that people with disabilities need to drive this change themselves.

It came to my attention over the weekend that student Kathleen McNamee, senior editor of the University Times, ‘cripped up’ or explored Trinity College campus in a wheelchair. What’s wrong with this, you might ask. Isn’t it great that people without impairments are trying to see the world through the eyes of a wheelchair user? Well firstly, Kathleen is not a wheelchair user; at the end of her article she wrote: ‘While I will be happy to hand my chair back tomorrow morning, I am also aware that not everyone is afforded this opportunity’. To me this implies that she sees the ‘problem’ as the wheelchair,  not the inaccessible environment. Also, why did she have to ‘crip up’? Why didn’t she look for the experiences of full-time wheelchair users who navigate the campus on a daily basis?

Secondly, I felt that the article was a little unfair on Trinity. When I carried out an access audit in 2004, we identified all of the problem areas and efforts have been made to fix things: the pathway through Front Square, there’s now a lift up to the Pav (the on-campus watering hole) and ramps to the buildings in Front Square. Things are far from perfect, but they’re improving.

Irish Rail, however, seems to be getting worse. A friend of mine told me recently that on principle she refuses to give any train station 24 hours’ notice of her intention to travel because she sees herself as equal. Today I had to travel by train (I had no wheelchair, just my rollator) and didn’t give notice, so I had no reason to be disgusted when assistance didn’t appear in Tullamore (even though I rang an hour beforehand), leaving me no choice but to fling my rollator and myself off the train. Had I been in my wheelchair I’d probably be writing this from Galway!

So to summarise, I’m looking forward to my wheelchair being repaired in the morning and to getting my independence and energy levels back. My normal life back. I know I should make more of an effort to get fit, and some might think I shouldn’t be so lazy. Feck that. My daughter needs a mummy who has the energy to do things and go places with her, and I need the energy to write, and that’s exactly what my wheelchair offers. It doesn’t matter how you get there, as long as you do!