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Guest blog from the author of 'Don't Wake Me', on healing after the loss of her son

(7 Posts)
KateMumsnet (MNHQ) Thu 13-Jun-13 15:23:33

Today's guest blog is from Rahila Gupta, whose play Don't Wake Me: The Ballad of Nihal Armstrong describes in verse the life she had with her son, Nihal, who was born with severe cerebral palsy.

The play, which has received rave reviews and been nominated for two Off-West End Awards, is a rollercoaster of loss, grief, joy, strength - and, throughout, Nihal's wicked sense of humour. Here, Rahila describes how she came to write it.

"How do you respond when your future is stolen from you? Writing as therapy is a well-known strategy of coping with grief, and it has always been my refuge. But in the process of healing myself by writing about my son who had cerebral palsy, I found that my words also reached out to parents; especially to parents of disabled children, who may have felt marooned in their unique and lonely experience.

With the help of a friend, a theatre director, Guy Slater, who was also coming to terms with the loss of a young woman with cerebral palsy, to whom he had been a guardian figure, I turned my story into a stage play.

In June 2012, Don't Wake Me: The Ballad of Nihal Armstrong had its first outing in a theatre. I stood on stage holding hands with Jaye Griffiths, the marvellous actor who breathed life into my story with passion and tenderness, looking at the audience, tears streaming down their faces as they gave us a standing ovation that seemed to go on forever. How had it come to this?

The feeling of sheer ecstasy of bringing my son, Nihal, to life - to eternal life - swept over the deep loss I'd felt as the hearse had stood outside our front door and I had held on to the banister, refusing to go to the funeral, my father gently attempting to pry apart my fingers, the imprint of the banister still clearly visible in my mind's eye.

"Oh my darling, my little love,/Tying and untying our bond,/Cannot hold you nor let you go,/Can't stand and fight nor abscond."

Jaye weeps as she says these lines in rehearsals. Her tears have me weeping too as I remember the rollercoaster ride that lasted 17 years.

Nihal was born in 1984 after a difficult birth which ended in a Caesarian section, after which he spent nearly a month in the special care baby unit as he struggled for life. His kidneys failed, he had fits, and he suffered brain damage. He had been starved of oxygen at birth. As a result, he was unable to use his arms or legs, sit or stand unaided, feed himself, crawl or even roll over because every muscle in his body was tight and beyond his control.

Yet at seven months old, I discovered that he understood the names of the various parts of his face. I would sit him on my lap and hold his fisted hand close to his face and ask him to touch his eyes, nose and so on. He would bring the relevant part of his face down to his hand. Despite the global damage, by some miracle it appeared that his cognitive abilities had remained intact.

I felt at once elated and deeply depressed. The joy of being able to communicate with him was soured by the knowledge that his awareness of being imprisoned in a non-responsive body would only bring him pain. There were times when he was older when he sobbed his heart out (and not just when he was listening to a Celine Dion song). He couldn't always tell me why but his frustration twisted my guts.

Even when I demonstrated this 'game' to the professionals, they did not believe the evidence of their eyes. The established orthodoxy was that self-awareness in children happens around the age of 18 months. Any earlier and it is the parent that comes under scrutiny. But these milestones are based on able-bodied children who are too busy crawling, sitting, and sucking their toes to be interested in a game which required such stillness. I wasn't arguing that Nihal was a genius - merely that he was bored.

Over the years, as we battled to get him into mainstream schools, we were to meet this attitude again and again. Nihal dealt with this by refusing to be tested except if it was done by stealth or by someone who had gained his trust by believing in him. This became self-defeating. The less he co-operated, the more it looked as if my claims were based on fantasy. The breakthrough happened at the age of eight when he began to use facilitated communication. An A5 alphabet board would be placed before him and if you held his hand he would spell out words, sentences, paragraphs. He would tell surreal jokes, let us enter into his world of warped morality and wonder of all wonders, do some school work.

Nihal made his way right up to GCSEs in Maths and Science. We had won the right for him to sit his two-hour exams over four hours over a whole week because he got easily tired. We had asked for eight hours and we were going to lobby the Board again.

But then... I found him one charcoal grey morning, on Christmas Eve, heartstoppingly still.

My heartland had been nuked. I set up a charity in his name - the Nihal Armstrong Trust, which gives out small grants to families of disabled children for equipment and services that the local authority will not fund. It allowed me to keep in touch with the world from which I had been so brutally wrenched by his death. Writing this play was another way of keeping in touch.

Every time it is performed, Nihal comes alive for me. I think the play speaks to all parents because all of us want the best for our children. But it speaks especially to parents of disabled children who feel more alone and confused than most - championing our children against a seemingly hostile world and, at the same time, feeling incredibly sad on behalf of our children whose disability prevents them from living the lives that we had dreamed of. At least, that is what the audiences at Chickenshed theatre and St James theatre have said to me."

'Don't Wake Me: the Ballad of Nihal Armstrong' is showing at the Cockpit Theatre in London now (3-22 June). Tickets are £12. From 5-25th August it will be at the Gilded Balloon, as part of the Edinburgh Fringe Festival

SameDifference Thu 13-Jun-13 16:40:40

As a child disabled since birth, I have to say this is one of the most beautiful articles I have ever read.

I've been lucky enough to see the play which was an absolute pleasure to watch.

I also have both Cerebral Palsy and (at least) average intelligence. So I have believed from a very young age that all other children with Cerebral Palsy are, like me, of average intelligence. Anyone who says otherwise- especially when there is so much evidence to prove them wrong- is wrong.

Your love for your son comes out so clearly in this piece, as it does in the play.

JustGiveMeFiveMinutes Thu 13-Jun-13 17:47:46

I listened to Rahila's interview on Radio 4 recently. Her encounter with the Occupational Therapist completely floored me. It's a story that will stay with me for a long time.

TeWiSavesTheDay Thu 13-Jun-13 20:00:01

Really beautiful post, thank you.

HairyMaclary Thu 13-Jun-13 20:21:48

I think the impact of the frustration and boredom of young children who are cognitively 'normal' in a body that is not responsive is massively underestimated. My son has CP, far milder than Nihal's but we saw this from very early on, now at 8 he can start to express it verbally. It's very difficult to deal with, for him and us.

It is a lovely story, written beautifully. Thank you for sharing.

saintlyjimjams Thu 13-Jun-13 22:00:47

Beautiful post thank you.

And FC getting an outing the UK - fantastic stuff. My son is severely autistic and has recently started to communication using a communication aid - suddenly, as a teenager, people are beginning to realise how much he knows and understands, although tbh he has been demonstrating it for years. I was of course seen as in denial during his early years.

He's lucky - he can use his communication aid independently so there's no doubt in anyone's mind, but I know many FC users, and know how difficult it can be for their voice to be accepted. I first came across FC many years ago via Lucy Blackman's wonderful book, Lucy's Story & realised there was hope for my son.

I hope to be able to see the play one day.

FoxPass Sun 16-Jun-13 12:41:50

Beautiful post, Rahila. Reading it I can feel your love for Nihal. I am going to Edinburgh festival so I am going to see Nihal's play.

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