Why I’m writing again

It would be incredibly pretentious of me, having started writing again only four months ago, to say that I would love to write full time. I’m certainly no JK Rowling or Marian Keyes or Cecelia Ahern. Yet, the more time I spend with my ridiculous thoughts, the more I find myself leaking them onto this page and, more specifically, this blog. And the more I feel that, Yes, this is what I want to do.

From a very early age, I have been acquainted with the written word. My mother, fearing that I would not be accepted into the local mainstream school, taught me to read at the age of three. I was reading before I was potty-trained at the ripe old age of five. When I was in Junior Infants, I had already read all of the class readers. I was bored, which the teacher was not expecting.

I have always been encouraged to write. At a basic level, I was given an electric typewriter at school, and it was through using it that I communicated my basic human needs, such as the need to go to the toilet. I had to type out all the answers to the teacher’s questions, as my speech was on a par with someone who was heavily inebriated. I remember, even at this age, thinking how degrading it was. As far as I was (and still am) concerned, I can talk, I do my best to be understood. It’s up to those to whom I’m talking to, to make an effort to listen.

Even now, however, this doesn’t always work in practice.

When we were making the RTE Documentary, ‘Somebody to Love’, I made it quite clear that my speech was the only part of my disability that I would change, because I feel that people tend to link my slurred, incoherent speech with my cognitive ability. For example, if I have to make a phone call to someone I don’t know, they tend to ask me to put my parents on the phone, or they hang up on me. ‘Call back when you’re sober’, ‘Is there anyone there with you’? ‘Listen, I’m hanging up because I don’t understand what you’re saying,’ are pretty standard responses when I call somebody who doesn’t know me. I dread phone calls, and firmly believe that every single person on the planet should have email or text. So. Much. Easier.

It’s been twenty-five years since I started primary school, and a lot has changed since then. I use a laptop instead of a typewriter, and I can make myself understood when needs be. I’m a wife and a mother; instead of being a dependent, I’m heavily depended upon. I’ve a degree in Trinity and relatively good experience of the working world. Yet, I’m still perceived by (some) people who don’t know me as a victim of unfortunate circumstances, who will never enjoy a decent quality of life; who is in some way inferior or lacking.  I endure the staring, the tutting, the ‘isn’t it terrible, the poor pet’, because to verbally object would be futile, like throwing petrol on a roaring fire.

And this is why I’ve started writing again. Admittedly, it would be a bonus if, one day, it became a way for me to put food on the table. For now, I’m just happy that the writer’s block is gone and I’m able to write once more, knowing that at least my words will be understood, even if I’ve nothing of importance to say.

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Mama Mia!

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.

Facing my demons

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.