Tag Archives: grief

Our Fallen Comrades

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(In tribute to Selina Bonnie)

“…and those who once paved the way for us

Are dying, one by one…”

This is a quote from my own poem, Fight, Fight, Fight, which I wrote in November 2017. John Doyle had just passed away, and I was upset and extremely pissed off. Bereavement and death is a fact of life; we all deal with it at some point. Many of us spend our lives grieving a grandparent, parent, friend or, unthinkably, a child. Death is a natural part of life; yet it doesn’t feel right to say that I can list, off the top of my head, at least thirty people who have died in the last ten years. Perhaps more than thirty. Disabled people, that is. Peers. Companions. Life-long friends. And no matter how many times we lose a friend, the sting is always acute.

I have been trying for the last ten years to understand the unique bond that holds disabled people together. It may be that organisations such as Independent Living Movement Ireland and the Irish Wheelchair Association created spaces over the years for disabled people to come together. Maybe it’s because only we, with our wealth of lived experience, can truly understand the exclusion and discrimination that we face on a daily basis.  When we share our experiences, we come to understand that it’s not “just us” and, over time, we realise that we are not the “problem”. And when one of us decides to challenge the system, we all do. As difficult as it can be, we understand that our personal must become political, in order to help those coming behind us. Of course this isn’t fair, but knowing that you’re supported by a unique movement, motivated by a genuine thirst for social justice and a desire to make life easier for everyone, makes the life of activism a lot more bearable. People who look out for you and genuinely care about you.

When we were born, our parents were told not to have high expectations. That we would never amount to anything. And that we wouldn’t live long. That speech seemed to have been given to parents of disabled children everywhere; I have heard and read those exact words, verbatim, so many times in my life. Thereafter comes the next part of the story: we proved them wrong. We earned our place in the mainstream. We progressed in life, despite the low expectations. Then we became examples, beacons of hope for the generations coming behind us. And as disabled people, we bonded through our victories and shared disappointments and became stronger. We became family. A modern-day family, with favourite brothers and sisters, and pains-in-our-arses that we begrudgingly admire, sometimes even partners and soulmates.

Very often, disabled people came together for a common cause, but as we began to open up to one another, we realised that our commonalities went much deeper. We shared the trauma of overmedicalised childhoods, and as we became more comfortable with each other, we started to wonder if we could, in fact, have a better quality of life. With our peers behind us, we felt emboldened to take risks, to reject the pity of strangers in search of equal rights. As children, or newly disabled people, no-one told us that we didn’t have to put up with injustice. Through getting to know our peers, we figured that out for ourselves.

That’s why it’s always such a bitter pill to swallow when one of our precious family members is taken from us, far too quickly. As a collective, we have broken through so many glass ceilings, but in a personal sense, disabled people have become my closest friends, the people I trust most. If I need advice on parenting, on adjusting to life with chronic pain, or even on what kind of dress would suit me, it just so happens, without me thinking twice about it, that I will seek out a fellow disabled person. I have bonded with people over finding the right Personal Assistant, the pros and cons of working freelance, how to pace myself during pain flares, how to eat a healthy diet on a budget and with minimal effort – all things that, with the greatest of respect, a non-disabled person may never have to think about. I have friends who’ve taught me parenting tips; how to maintain my wheelchair; how to apply for benefits and council housing. Sometimes, after writing a disability-related blog, a friend will share it with an organisation or a new group of people, and I in turn return that favour. We’re not all happy-clappy all the time, but we do help each other, and we know we have only to ask.

It sounds terrible, but I’ve developed a sort of “death fatigue”. I’m so tired of bad news, of funerals, of grief. This thought floods my mind as I try to comprehend the loss of Selina Bonnie, who was one of Ireland’s fiercest activists. It still feels wrong to speak of her in the past tense. Not only did Selina fiercely believe in the importance of accessibility, so much so that she worked as an Access Officer in South Dublin County Council for twenty-two years, as a proud Indian-Irish woman, she embodied the meaning of intersectionality, supporting LGBTQI+ rights, as well as becoming heavily involved in campaigning for the reproductive rights of disabled people. 

In fact, she was a proud Ambassador of the (Re)al Productive Justice initiative, a project which is the brainchild of the Centre of Disability Law and Policy (CDLP) in NUI Galway. Through this project, Selina was generous in sharing the physical and attitudinal obstacles she faced in accessing fertility treatment and, subsequently, maternity care, and in doing so has made a real contribution to the advancement of reproductive rights for disabled people. I had the honour of working with her on this project, and I was floored by her boundless energy, her tireless mission to educate others on the importance of a rights-based approach, and her willingness to become vulnerable by allowing her story to be used as an educational tool.

Selina also contributed to Conversations about Activism and Change, and in recent days, I’ve felt simultaneously grateful for and awful about this. When I pitched the idea to Independent Living Movement Ireland, I stressed the importance of capturing a history of disability rights, in our own words. The unspoken insinuation was that over the years, so many stories have been left unwritten and are now lost, with many of those involved in the early days of the movement passed away. In promoting the book, Selina herself acknowledged the loss of these stories, and was adamant that we begin documenting our own history. I only hope that she was happy with how her story was captured, and that Selina’s words inspire future activists for generations to come.

The only thing left is to offer my condolences to Selina’s family and all who knew her and to offer them a virtual hug. I also extend arms around my own disabled family, who have endured too many losses over the years. May we always speak about them, may we live the lives they fought for us to have, and may we continue the fight. Selina, and indeed all the disability activists who have sadly left this world, will never be forgotten, for their activism and their friendship. 

Grieving and healing

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‘They say time’s supposed to heal you, but I ain’t done much healing,’ are the lyrics that most struck me when I heard Adele’s new song ‘Hello’, for the first time. They certainly aptly describe how I feel about the fact that I, like so many other people across the country, didn’t manage to get tickets for her upcoming concerts in the O2 and in Belfast in spite of trying to phone Ticketmaster from 8.30am onwards on Friday 4th December (God loves a trier, right?) and reports later revealed that tickets had sold out within five minutes of going online. I won’t lie. I was gutted, but later made light of it when I offered my kidney in return for Adele tickets on Facebook (that offer’s still there, by the way. Message me here, on Facebook, on Twitter… whatever suits).

I’m just about over it now. If only real grief was so easy to deal with.

Today will be the seventh year I’ve marked mum’s birthday without her. Seven years. I’ve counted it up a few times because I still can’t believe she’s been dead for so long. She’s been dead for six and a half years. I haven’t had a proper conversation with her, touched her face or heard her voice in nearly seven years. Breaking it down like that fills me with panic, because when she first passed away I thought that I would be unable to function without her. I didn’t think I could. At the start, there were days when I would go to work in jeans and hoodies. There were other days when I couldn’t face going to work, or eating, or doing anything remotely productive. Then there were the constant thoughts. My last words to her were not ‘I love you’ or ‘Thank you’… (It annoys me that I can’t remember what they were, but I know they were nothing remarkable). If only I’d known how sick she was, I would’ve, could’ve, should’ve… What were her last thoughts, was she scared/happy/sad…? I was consumed by these pointless thoughts for nearly two years, and they nearly destroyed me. For my own wellbeing, I’ve learned to let them go.

In an attempt to ‘get my act together’, I reluctantly agreed after three months to go to the Parish Centre in Tullamore for counselling. Bless them, they were nice, but the lady I spoke to spent most of the time asking me about my disability. ‘Right, so, you feel guilty because you didn’t get to say goodbye to you mammy… here, tell me something, do you dress yourself in the morning? Aren’t you great?’ At the end of the session I lied and said that she had cured me of my grief and I didn’t need any more counselling sessions. In fairness, the bizarre experience did cheer me up for a while (purely because it was like it had happened in a parallel universe), but then I found myself facing my own feelings again, and I didn’t like that. So instead of dealing with them, or at least acknowledging that I had them, I decided it was my job to look after everyone else. (I genuinely love looking after others, don’t get me wrong). Is Laura okay? Is dad okay? Is Stephen okay? Is Alex okay? Is John Paul okay? Are the goldfish okay? I took on as much as I could in order to avoid coming face-to-face with the gut-wrenching pain that was losing my mother. This wasn’t their fault, and I was more than happy to do it, but my obsession with their well-being became a tad unhealthy to the point where I couldn’t decipher what I felt myself.

Even when it came to selling our family home, two years later, I remained steeled against falling into sentimentality. We had to sort through all of our mum’s stuff, which was the hardest thing I’ve ever done (you know, apart from losing those Adele tickets). I tried to be practical and sort everything into ‘valuable’ i.e. jewellery, handwritten books, her drawings and paintings, photos and ‘crap’ i.e. keyrings, pencilcases, receipts, empty notebooks. Us three girls did this together and Laura and Alex started reminiscing. ‘Aw, remember when mum wore this? And the day she bought that?’ I walked out on one particular occasion. I didn’t want to remember. As far as I was concerned, mum had been dead two years and grieving time was over. I had to move on with my life. I wasn’t going to get sucked into the past again. It was too painful. If I had to talk about mum in the past tense, it would mean that she was truly gone, and I wasn’t ready to acknowledge what that meant yet.

Fast-forward three years, to 2014. Much had changed. I had my own daughter. We lived in our own house. Everything was good, brilliant even, when suddenly I started to feel a grief so intense it felt like it was choking me. I’m not sure whether it was the passing of a family member in April 2014 that triggered my grief, but I felt the loss of my mother as strongly as the day she was buried. Every part of my body craved her, to see her, to hear her, to have her meet Alison. I felt lonely for her. I wanted to chat to her. This was nothing new, usually these feelings would pass as the days wore on. They didn’t this time; in fact they intensified. ‘To hell with this,’ I thought, annoyed, ‘I have a child to mind. Cop yourself on.’ But I couldn’t. Ignoring my grief wasn’t going to work, not this time. It got to a point where I could barely face getting out of bed. I forced myself to take time off work to recover and embrace these feelings. It was difficult but I learned so much about myself during this time. I learned that I tend to take on too much, that I become overwhelmed too easily, and that keeping things bottled up comes back to haunt you eventually. But equally I realised that I was stronger than I thought, that I had somehow managed to keep things together and that I would eventually regain the ability to do these things again once I took the time to take care of myself emotionally.

When I first read about the five stages of grief, I thought that the grieving process would be over once I’d entered and ‘completed’ each stage (the stages are denial, anger, bargaining, depression and acceptance). I imagined the ‘acceptance’ stage as some sort of finishing line where I would be able to think of my mother without bawling like an idiot. I thought that it would be like the ending of a Disney film – soppy and sentimental, but over. Some days I think I’ve conquered this grief, but in the last twenty-four hours I’ve heard ‘The Fairytale of New York’ twice and I’ve cried in public, twice. (Once was at an office party so hopefully my colleagues just thought I was pissed.) My mother once told me that ‘Fairytale’ was her favourite Christmas song, so every time I hear it my soul wells up with sadness that I try to suppress. Sometimes I can do it, other times I fail miserably.

I’m not an expert but from what I’ve experienced over the last six years, and from listening to others’ experiences of grief, it is a process that never ends. Although I’ve had to learn how to function without my mum, it doesn’t mean that I don’t miss her, and I still shed a tear or two at the most inappropriate times. And though it’s not convenient, it feels somehow liberating to acknowledge and embrace these feelings when they arise instead of trying to push them down all the time.

I guess what I’m trying to say is: mum, I love you. Some days I think of you more than others, and there isn’t a day that goes by that I don’t miss you. I won’t be able to contain my grief all the time, but hey, I’m only human. All I can do is try my best to make you proud every day. Happy birthday. Big hugs. I’ll have a Knickerbocker Glory in your honour (I’ll do what I have to do).

 

PS Seriously lads – those Adele tickets – all prices considered. All unnecessary organs up for grabs.

Just a date

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It’s funny how the human mind can make associations, how a chill in the air or a familiar smell can wash over you and bring you back to a time and place that you thought you’d never have the good fortune/grave misfortune of experiencing again. For example, when I see my own breath fog up against the black sky for the first time every October, I know that Halloween is just around the corner, with Christmas nipping furiously at its heels. I know as I chomp on a contraband Easter egg after Alison has gone to bed at night that the slight red tinge in the sky is signalling the arrival of summer. I smell the barbecues, the freshly mown grass, the faint titter of laughter wafting gently through our windows.

And despite the improvement in the weather (well, normally. At the moment it is freeeeezing), I begin to feel cold, heavy, wary. Sometimes I feel sick with restlessness and anxiety as memories, good and bad, swoop in and strangle me until I can’t breathe. May used to be my favourite month of the year, and in many ways, it still is. For me, May signifies the beginning of the end of school and college. It reminds me of a photo that was taken of my brother and I when I was five, celebrating my brother’s ninth birthday on 18 May, just me and him, with an icecream log. Mum wasn’t there because she was recovering from her c-section; my sister had been born almost a fortnight beforehand, on 7 May 1989.

Exactly twenty years later mum closed her eyes for the last time.

I’m sure that it’s an absolute bitch for my sister to have to share her special day so selflessly. I’m sure that no-one wants to sit around moping on their birthday, getting all maudlin about the past. Birthdays should be happy days. Personally, though, I’ve always found birthdays to be a bit of an anti-climax (apart from my 21st when John Paul proposed in front of my family and friends. That was an awesome birthday), to the point where I would actually rather if the day came and went without being marked or acknowledged at all.

And for years I felt the same about my mum’s anniversary, which I try in vain to separate from my beloved sister’s birthday. Can the two be separated? It’s a struggle every year to experience such happiness and sadness at once. How have I managed it? Trying to pretend that the anniversary didn’t bother me, that’s how! Oh so it’s mum’s anniversary today? Well, she was dead yesterday and she’ll still be dead tomorrow, so what difference does a date make? It’s Laura’s birthday, let’s not forget that!

Trying to deny the sadness didn’t work for me in the long run, and last year five years of suppressed emotions hit me suddenly like a freight train. I had to take a considerable length of time off work to feel normal again. Note to the readers: don’t bottle up your emotions. They will come back when you least expect and bite you on the ass. Hard.

For the first couple of years after mum died, I went through the motions. For the first anniversary, I insisted on holding lunch in our house after the anniversary mass for all my relatives so that I didn’t have to face my emotions. It worked; I was so busy in the lead up to the event that I barely had time to think. The second anniversary, I stood beside the grave with my aunt, husband, sisters and brother, then proceeded to go out that night and get wasted (in the name of celebrating Laura’s birthday of course). By the third anniversary, I had an almost three month old baby with terrible reflux and I spent the whole day crying because I felt like an inadequate mother. I had been so hard on my mother and yet, she managed to raise four of us. At that stage, I was seriously debating whether I had it in me to raise one.

Yet somehow mum was there, guiding me. Some days, it just wasn’t enough. I needed to hear her voice. I longed for the opportunity to ridicule her childraising advice. I wanted her to tell me I was doing something wrong, nagging me to the point where I’d lose it and ban her from seeing her only grandchild. I needed her to remind me that I was not alone. And she did, in her own way. I managed to push past the fear and the preconceptions I had of myself, and do the very best for my child, the way my mum did for me.

This year, I will try to embrace the date and try not to suppress my emotions. I promise to allow myself to feel the dread, the sadness, the emptiness. I will grieve for what we lost, as well as what we could’ve had. Most importantly, I will remember that the 7 May is a day of happiness and celebration, and acknowledge that people enter and leave our lives in the strangest of ways. And even though this day is tough, simply because of a date on a calendar, I will be thankful for the fact that I had such a wonderful mother who gave us a sibling who is intelligent, beautiful and loving. (Laura, I can hear your head exploding from here).

For me personally, 7 May will always be a strong reminder that good things happen, and bad things happen, and after they do, all that is left are memories, both beautiful and terrifying.

Rest in peace Mum, and thank you for bringing Laura into all of our lives. I think of you and miss you every single day. And happy birthday sis, make sure you fill your special day with lots of wonderful memories. xxxx

Mama Mia!

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Since writing my last blog post, I feel somewhat lighter, happier, as if I have been freed from a horrible prison. And now I have the confidence to say that there are days when I, an amateur mummy, worry that I’m doing the wrong thing. Have I allowed Ali to eat too much chocolate today? Is that glue toxic? Where did she pick up  on that phrase?  and so on.

I was never under the illusion that motherhood was easy. In fact, I imagined it to be so much worse than it is. Until I had Ali, I didn’t ‘do’ kids. They were dirty, nosey, smelly creatures who pervaded every area of your life. However, no words could describe the love I felt when the nurse placed her in my arms. Suddenly, it felt as if I had changed. I was not Sarah any more, I was Alison’s mummy. And my own mummy was not there to tell me what to do or how to cope with this shift in identity.

It’s almost obligatory at Christmas to think of loved ones who have passed away. In my case, the feeling of loss is intensified by the fact that Mum’s birthday is this Monday 15th December. She would’ve been 57, only a ‘young wan’. It doesn’t help that her favourite Christmas song is ‘Fairytale of New York’ which so happens to be played everywhere about fifty times a day in the run up to Christmas. People look at me in shock when I don’t squeal in delight when it starts. Well, now you know why.

Becoming a mummy myself has been the greatest privilege of my life, but constantly wondering if I’m doing the right thing can sometimes be draining and isolating. Torturing myself by saying ‘I can’t even ask my mum’ doesn’t really help, all that does is send me into a self-pity fest. I find myself wondering how she did it with four; when sometimes I struggle with one, bearing in mind that I have Cerebral Palsy and wasn’t always the self-sufficient being I am now.

There was many a time when I truly resented my mum. Like all the times she made me attend physiotherapy and speech therapy after school when I really wanted to be at home writing poetry. Like the times she made me type out my homework on an old Sirius computer with an eerie green and black screen, when I wanted to write in my copybook like my classmates (to me it’s all the better if the teachers can’t read it). The final straw was when she sent me to the National Rehabilitation Hospital when I was sixteen, for intensive physio, speech and occupational therapy. I was livid because I was missing school, and the auditions for the class play (which I had written). Surely I, living with the disability day in, day out, know best what I need? Mum didn’t seem to see it this way.

Mum pushed me hard, often to the disgust of other parents. ‘Keep that foot straight’, ‘Speak slower’, ‘Look at what you’re doing’, she would bark at me. I would give her the doe-eyed look, the one that said, ‘You heartless bitch’. She seemed to find this hilarious. She revelled in this bitchiness. Often she and I would be about town and somebody would come up to her and say something like, ‘I feel sorry for the poor creatur.’ To which mum would respond, something along the  lines of, ‘You feel sorry for her? What about me, I have to put up with her all the time!’ or ‘My daughter doesn’t need your pity. She has more brains than the two of us put together!’

My mum was not just a mother. She was Una, a sister, a friend and a nurse to half of Tullamore at some stage. When I was pregnant, all of the nurses in the outpatients department had stories to tell about her, which usually ended in ‘well, I will never forget how your mother helped that man/woman that day.’ Mum used to tell me that nursing broke her heart. She listened to so many stories and carried them with her to the grave; to this day I couldn’t tell you any of them, but I know that some of them affected her deeply because she told me so.

Mum was elegant, witty and caring; she could also be forgetful and embarrassingly inappropriate. She spoke her mind at all times, which often had hilarious consequences. She wasn’t perfect by any means, but I couldn’t have asked for a better mother. She is the reason I am who I am today, and if I can do half a good a job with Ali as she did with me, then I would be a very happy camper.

So happy Christmas, I love ya baby, I can think of a better time, when all our dreams come true.

Happy birthday Mum. You may not be twenty-nine and a bit, but you will never have to use the purple rinse either. Thank God for small mercies.