Category Archives: health issues

Enough is enough

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I’ve decided to take a career break from work. Six months, to be exact. It’s something that I’d been toying with for a while but couldn’t quite bring myself to do. I work in the area of Independent Living and I’m passionate about the rights of people with disabilities. I love working with my fellow leaders. But I also love writing, and I want to have more time with my daughter, so I’m off. And it is blooming scary, I tell you. Not only because I’m not bringing in a wage, but because I’ve always worked, it’s a crucial part of my identity.

That said, I will never regret all of the time I’m enjoying with my daughter, who is now three-and-a-half and great fun to be around. She’s energetic, imaginative, cheeky, and growing up all too fast. I admit that there was a time when depression clouded my time with Ali; everything seemed hard, an effort; I didn’t think that I was enough for her. But now that I feel more like my old bubbly self again I intend to enjoy every second with her.

Since Alison was born, I’d always been afraid that I’d never be good enough for her. I was overly conscious of how I was perceived as a parent with a disability. I worried that Ali would resent me for having her, that I would become a burden on her. I’m not at all afraid of this now. Today, Ali and I walked to the shop alone together for the first time, me in the wheelchair holding her hand, her on the inside of the path. It was the best feeling in the world, because heretofore I wouldn’t have trusted myself to do this. I am finally starting to see myself through my own eyes again, not through the eyes of others.

It’s amazing how we expect so much of ourselves, but we never step back to admire what we have done. We don’t have time, we are too busy, it’s not enough. For example, I told myself that I would be an established journalist with my first novel written by the time I was thirty. I wanted to be fit and able to walk everywhere unaided so that I could keep up with Ali. Since turning thirty, I’ve been bitterly disappointed in myself that I’ve done neither of these things. It was more than disappointment, it was pure disgust, self-abhorrence. It sounds dramatic, but for months I could barely look at myself in the mirror without this disappointment washing over me.

Recently, however, something changed. And for all the things I teach my daughter on a daily basis, a month ago, she taught me the most important lesson of all.

It was evening-time. Ali and I were watching telly and I said to her, ‘I love you,’ to which she replied, ‘ I love you too mummy’. I thought for a moment. Lately, I’d been feeling grossly inadequate: I’d been in too much pain to play football, too tired to play chasing and I’d say she would have baulked at the sight of another defrosted spag-bol, cooked in bulk about a week before. ‘Ali,’ I said, ‘how would you like a new mummy?’

Ali was intrigued. ‘A new mummy? Is she nice? Who is it?’

I replied, ‘I don’t know yet. But this mummy would be super cool and play football and basketball and chasing and tie up your hair and do your buttons and go for walks. Well, what do you think?’

Ali shook her head and looked at me, placing her small hand gently on my shoulder. ‘I don’t want a new mummy. I just want you.’

Pathetic that I should need such reassurance from a three year old, but little does she know that those four words, ‘I just want you’, have changed my life so dramatically. Physically, the aches and pains seem to have faded significantly. I have more energy and a new positive outlook on life. I feel I can do anything because this little person looks up to me. I just want you.

And being so happy has made me realise that my fantastic husband is still my best friend. He has been incredibly supportive and just wants to see me happy. He is more than happy to see me tapping away on the laptop, trying to come up with literary masterpieces. He never tells me that I am crazy or deluded, though I am probably both!

From an early age, we are encouraged to compete against each other. In school, we are encouraged to study hard in order to be the best. Even under-tens partake in handwriting competitions, poetry competitions and art competitions, we have sports competitions. When we are eighteen, we sit the most competitive exam invented, the Leaving Cert, in order to get high points, to be accepted into a course so that we can pursue a challenging career. We push ourselves to be the best employees, the best friends, the best partners, the best parents, often to the detriment of our physical and emotional health.

And now, I’m saying enough, or more specifically, that I believe that I am enough. I will still give my all to everything I do, but I won’t be beating myself up if I don’t succeed. Today, at least, I feel happy and free, and if my daughter and husband still love me in spite of the self-berating and toing and froing I’ve been doing over the last few years, then I must be doing something right.

Just take it easy…!

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I’ve been sitting here for the last half hour staring blankly at my laptop, opening website after website, reading dodgy articles on thejournal.ie. That’s not why I sat down. I sat down to finish off a journalism assignment that I started two months ago. This sounds like I’ve been dragging my heels, procrastinating this assignment. I have not. In fact, I have researched four thoroughly different articles, all half-written, because I couldn’t decide which one I wanted to write more. Don’t get me wrong: this information will undoubtedly come in handy on a later date. But this article was going to be amazing. I mean award-winning amazing. That’s not quite what I see when I read it back. I’m now afraid to open it in case I feel an uncontrollable urge to delete the whole lot (again). I’m a relentless perfectionist to the point of neuroticism: in other words, I think I am losing my sanity.

The first half of my life was dominated by people pushing me to achieve my potential. I’m not saying that this is a bad thing at all: if it wasn’t for these people (my parents, teachers, Occupational, physio and speech therapists, etc), there is no way that I would be sitting here in my own house writing this blog. Somewhere along the way, I took over, setting ridiculous standards for myself. I wrote a play in Transition Year and later helped to produce it when it was staged by my classmates, some of whom were less than thrilled when they landed male roles (it was an all-girls school). It took the best part of a month to recover from  the exhaustion and my mental health was in tatters. Did I take it easy that summer? Nah! I instead got a summer job with the Tullamore Tribune, where I worked until two weeks before fifth year started, putting aside the money for a holiday in a feckin respite centre in Roscommon (not Ibiza) a year later. I know what you’re thinking. I’m wild. Woo! Then fifth year saw me abandon all forms of human contact as I threw myself into studying for the Leaving Cert. Worried by the prospect of ending up permanently unemployed, I spent eight hours a night (4-12) studying in Fifth Year, much to the despair of my broken-hearted parents who were actually expecting me to collapse dead on the floor with exhaustion. I have  to do this, I would say to myself. I have to prove to everyone what I am capable of. I will not be defined by my disability.

Somehow, I managed to dodge a prolonged stay in a facility with padded walls and men in little white coats and I made it to Trinity College. Phew, I thought, I can relax now. And I did for the first two years, until my marks counted for something, and guess what? The  old Sarah  came back in third year, and so did that irritating voice. You got a scholarship to study here, for God’s sake. There’s no point in doing things by halves. And without the nagging of my parents and (then) fiancé (now husband) I was free to stay up  working till 2-3am on  essays, presentations and my dissertation. I lived off sugar and cereal like every other student. I would turn up for tutorials, bleary-eyed, wondering which book was being discussed today (I only read a selection of novels. Anyone on that course-and you know who you are- who read every prescribed novel/play please step forward for your gold medal). Although I let my hair down a little, I didn’t exactly have a roaring social life in college. I will admit that I did go on three foreign holidays during my college years with friends from home, but the details of those are a little hazy (though not nearly hazy enough)!!

Earlier this year, I was thirty. Like many, I looked back on the aims I  had set myself for when I reached the  big milestone: have a  Master’s degree in Journalism and be actively working in the field; maybe write a novel or a book of poetry;  do a Masters in Disability Studies. None of these were goals I ever reached, and sometimes I feel as if I’ve let myself slide into complacency. On the other hand, I have such a wonderful husband who supports everything I do and without whom I’d be lost, my daughter who makes me smile from the start of the  day to its end with her hilarious antics and a lovely place to call home. I am so lucky, and it wouldn’t hurt me to stand back and count my blessings every once in a while.

Ugh, look at this blog. Look at the dust on the mantelpiece. Look at the laundry piling up in the back hall. Maybe I’ll do some dusting. Maybe I should fold more clothes. Or maybe I’ll just … take it easy and watch some TV and deal with it all tomorrow. It will be still there tomorrow, along with my unfinished assignment.

Maybe, one day I’ll learn that everyone has their limitations.

That nobody is perfect.

Sometimes I  need to take it easy, and hopefully one day, I’ll be okay with this.

Facing my demons

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It’s amazing what we as human beings are prepared to do to ourselves in order to avoid facing our feelings. It may be throwing ourselves into our work, in order to make every minute so busy with activity that we haven’t a moment to contemplate anything else, or it could be self-medication with whatever drink, drugs or substance we can lay our hands on. However, there comes a point where we can no longer do this and the only way to eradicate the demons that mercilessly control our lives is to face them and disempower them. And this is exactly what I am about to do.

Almost a year ago, my husband and I took part in a documentary ‘Somebody to Love’, which explored the challenges facing people with disabilities in finding love and forming romantic and sexual relationships. Partaking in that documentary was one of the most difficult things I have done in my life. The intimate nature of the recording and production meant that there was nowhere to hide from our feelings. We were in our own home,  our own environment, laying our private lives bare for Irish viewers to dissect.

Watching the documentary back, I can see myself trying to stifle my husband’s words, trying to stop him from saying something ‘stupid’ or ‘dangerous’. By ‘stupid’ and ‘dangerous’, I mean the truth or, more specifically, our truth. Our truth is that we felt frightened and alone. We felt that we constantly had to prove ourselves, that we  knew what we were doing, when in fact we did not have a clue. We’d never cared for a newborn before, and we were terrified, but we couldn’t let it show. In short, we were denied the right to be first time  parents: to cremate the bottle, to hold the baby upside down, to make mistakes.(By the way, I am neither condoning nor encouraging this behaviour. Please read the instruction manual that comes with your child).

One of the worst moments of my life was the day my husband and I were supposed to take Alison from the hospital, It was a Monday, and I was recovering marvellously from my section. I was feeding Alison well, and she was thriving. I was even walking a little using a walker, having had to use a wheelchair for the last three weeks of the pregnancy. However, I felt emotional and like shit; my section scar was sore, I was missing my own mother like crazy, and it felt like fluid was leaking from every bodily orifice. And this was the moment that the  head midwife, ward manager or whoever she was told me that they had ‘concerns’ about my ability to take care of my daughter. My heart broke. In that moment, it felt like Alison had died. I rang my husband and told him to take  Ali with him and leave me behind, because it was me, not him, that they had the problem with. Reading it now, it seems like the rants of a crazy person, but in that moment, it made sense. After numerous phone calls to social workers, public health nurses and Offaly CIL, we were allowed home, on the condition that a Public Health Nurse could come to our home every day and monitor our ‘progress’.

Nearly three years have passed , and now one of my best friends, who also has Cerebral Palsy, is excited about welcoming her new arrival in January. But after witnessing what  we contended with, she is starting to worry about how she will be perceived after the birth of her c child.. She will be a mother, not just an object of care, and it’s vital that she is enabled, without fear of judgement, to care for her child, It makes me furious to think that she, that we, have to think this way about the most precious event in any mother’s life, when children are being neglected by their parents every day.

and so I would urge her: If you by gross misfortune have to contend with these obstacles and attitudes, please have the courage to speak out.  This is only the second time I have done so, but I feel so much better. Only through our honesty can we truly help others and deconstruct the negative attitudes that have the power to destroy us.