I want to smash something, because the frustration in here [points to chest, body, head] needs to be out there. The kitchen would be a good place to start. There's lots of metal. Metal makes such a great noise, especially when it hits. Not like flesh. Thump, thud. Crash, bang. And glass, everything's so apparent when you break glass. Instant regret. Most of all though, I want to destroy the books and ornaments, standing in their straight fucking lines, sitting squat in their smug safety. “Oh look at me, I belong here, in this order, I've been here a while now, prettifying the place up, waiting to be read, holding lots of memories between my pages, in my form.” I want to rip them off their shelves and throw them as hard as I can against a wall. Instead, I'm just sitting here, with my fingernails in my forehead, trying not to gouge lumps out of my face.
They had tissues today. I only cried once. Can't stand it when I cry in public. It makes me feel so weak and as if someone might touch me. I don't like being touched with kindness, because I'm scared it'll all come out then, and I won't know how to make it stop. Don't touch me with kindness. Hit me. Hit me really fucking hard so I have to lock my knees and clench my fists and stick my chest out. The fighting stance. I can do that. I have to do that.
It was a silly thing, a short story called 'Welcome to Holland'. We'd done one of those group exercises first: imagine you win a holiday and spending money, but you've only got twelve hours before take-off, list the things you need to do. It would be kinda great, wouldn't it? Fifteen parents sitting 'round in a circle, all of us knowing that we couldn't take advantage of the prize, because we can't leave our kids, our disabled kids. The first thing we'd need to do is refuse the offer, even though we desperately need a break and good luck doesn't seem to come our way that often.
But just imagine you get on that plane and you're on your way to Italy. I've always wanted to go to Italy, to see Michelangelo's work in its natural environment, ride a Vespa, visit the Vatican. Of course, you might read some guide books to pass away the time during the flight and familiarise yourself with the territory. After a couple of hours you land, but when you get off the plane you notice the sign 'Welcome to Holland'. That's what it feels like when you give birth to a child with a disability. All those things you were looking forward to, where you thought you were going, they disappear in a moment and you're find yourself somewhere else.
The words started happening next, key phrases: 'exile, resentment, alienation, exhaustion, sadness, loneliness, guilt, frustration, anger, disappointment, isolation' … it's endless. We all agreed there is no light at the end of the tunnel. It's like staring down the barrel of a gun and being repeatedly shot in the face, except you don't die, because you can't die, that's not part of the contract, you just have to keep on keeping on, it's your responsibility and you can't escape. That's not what we thought we were signing up for. No one there, in the first flush of pregnancy, considered they might still be changing nappies or pushing a pram (wheelchair) twenty years later. Your kids grow up, leave home, get on with their lives, independently … Nah …
I remember when I was pregnant. At thirty eight weeks I went to hospital. “Please take this baby out of me,” I begged, but they refused. “He's too big,” I said. They disagreed, six pounds max they reckoned. I knew something was wrong. Three weeks later I had to be induced. He didn't want to come out. We were poor then, not even a pot to piss in, only thirty seven pence between us. It was a blasting hot June day. I walked to the hospital, couldn't afford a bus or cab. They forced my husband to leave me, sweltering, worrying, on my own.
The next day they shoved something up me and in me. It's tough being induced, going from no labour to hard labour. Seven hours of the most abject pain. I pleaded for an epidural. Eventually an anaesthetist arrived and insisted I pull my knees up to my chest. Lying on my side, my body shaking itself apart, feeling as if I was disappearing. Thank God for my husband. He recognised the signs of medical shock. Threatening violence, he cut through the intransigence of the midwife and other staff, making them to listen to me. They'd ignored me for so long that I'd actually birthed my son's head while curled in an impossible ball. He was slowly being starved of oxygen. Unbelievably, the midwife had failed to notice this simple fact. He came out at nearly ten pounds and unbreathing. They took him away. Alarms went off. Doctors crowded into the delivery suite.
“What's happening?” I said desperately.
They didn't answer.
“Is it dead? What's the matter with it?”
I tried to sit up, but a midwife pressed me into the mattress.
Later, back on the ward, I studied his little face. Half of it was covered in an angry blue mark. “It'll turn pink,” they said, “once he's fully oxygenated”. He was very quiet, fast asleep. I wondered into the nursery, situated next to the nurses' station. A woman at the far end, in a yellow dressing gown, was settling her baby. She turned around. “Can I see your baby?” I asked.
She started to cry. “He has a cleft palette.”
“What's his name?”
“Can I see him?”
“No one else has said that after I've told them.”
He was beautiful.
I went back to my own bed and slept until morning. Breakfast. Strict visiting hours. No telephone. Jordan was, indeed, pink and the birth mark on his face had become red. I didn't like it. Why couldn't I have a baby that looked normal? What would people say?
A doctor arrived, poked about in the crib momentarily, then stood straight to address me. “ … A fifty fifty chance of being a cabbage.”
He repeated himself.
“Get away from me. Get away from me and my baby. Get away. Get out.” My voice rose, I started to throw things at the doctor. Matron came hurrying down the ward and demanded to know what he'd said or done.
He repeated himself.
Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage. Cabbage.
She frogmarched him off the ward and then ushered me into a private room. I can't remember anything else.
Three months later the diagnosis was confirmed by CT scan. My son had (and has) Sturge Weber Syndrome. A facial birthmark, following the line of his trigeminal nerve, is reprepeated on his brain. This capillary abormality interrupts the normal electrical activity. About two hundred people in the UK 'suffer' from this condition and there is a wide spectrum, in terms of how the disorder affects individuals. They couldn't offer us any prognosis.
To a certain extent, the future is always unknown.
Fourteen years down the line and we've been through a lot. Jordan's first seizure was at ten months. They couldn't stop it, apparently that's a feature of Sturge Weber, intractable epilepsy. It did stop eventually, either of its own accord or because they finally managed to pump him full of the right combination of drugs. These little 'adventures' happened every three months for the next God knows how many years; one week in hospital, fervantly fussing by his bedside, followed by two months of rehabilitation, only to find ourselves back in hospital within a matter of days. A situation like that tears a hole in your life.
I could go on and on about: the time they declared him brain dead; the time there was no doctor available on a children's ward to site an intravenous line so we were bundled into the back of an ambulance and blue lighted across a city in rush hour; the time I watched an anaesthetist repeatedly shove an intubation tube down my son's throat in an effort to maintain his airway. It does something to you. It did something to him. Every bout of seizures not only increases the chance of a further cluster, but also, kills part of his brain, turns it to bone, steals a little bit of him and sets him up for further complications.
And you don't even have the luxury of just seeing your own child suffer. No, intensive care units, where the stools are on wheels so they can kick you out the way quickly, are full of children struggling to survive. There was the five month old baby, born prematurely, drowning in his own mucus, crying and crying and crying, until he stopped crying, then I knew he was going to die. Or the car accident victim, with his eyelids taped down, completely on his own, I sat holding his hand for an hour one day, it wasn't right that he should be so lonely …
As I say, been through a lot.
“Do you have any worries about the course?” the facilitator asked. Jesus yes. I've not done this before because I couldn't do it before, perhaps there's only so much reality one person can take. I don't want to go delving about in how I feel, what my expectations are, hopes, fears, dreams, bloody nightmares. As my mother used to say, 'it doesn't bear thinking about'.
“That I'll be defensive,” I replied.
She didn't ask me to justify my response. She didn't insist that I unpick it and work a way round it. She simply nodded. I liked her instantly.
Do you feel numb, blank, guilty, tearful, unable to cope, irritable, angry, suspicious, frightened? Do you have problems with sleeping? Are you easily startled? Do you have trouble concentrating? Do you deliberately isolate yourself? Do you find it hard to make decisions? Is your memory shot to pieces?
Define anger. Is that when you want to rip someone's head off and shit down their neck? Is that when you walk down the street, carrying a bottle back from the off licence, with your hand curled one way rather than another, just itching to crack open a skull? Is that when you attack people for no apparent or obvious reason? Is that how you can comprehend why someone might stab their wife to death/be a suicide bomber/get involved in a pub punch up?
Some nights I drink myself into oblivion.
Some nights I do worse.
Isolation, real, imagined, self imposed??? Despite all the anti discrimination laws, essentially it's no better. My kid still looks weird. People still try to talk with/to/at him in a language it takes his brain longer to sift and save, so he stands there, looking like an idiot, being unable to understand or articulate. If he were to say he wanted to get married, have children, that would be considered an outrage. He doesn't have the same opportunites or expectations. No, no, none of us do, everything's dependent and contingent but, broadly speaking, we're in agreement with regard to who, what, when, where and how. He can't even pattern those concepts and, because he's part of me, I find myself alienated from them as well.
The world's not a very friendly place if you don't fit in. What to do? What to do? Round peg, square hole. I guess you can hope the hole's bigger than the peg, in which case it'll pass fairly easily, like a soft stool. Alternatively, you can jam the peg through the damn hole, shaving off the sides, using brute force, but it might get stuck or damaged. Arse. Or you could get a big fuck off drill and make the square hole round. I mean why is the hole square in the first place? I've tried arguing with it, about its inhospitable squareness, pointing out how that invalidates the roundness of the peg, but that's got me nowhere. Fuck the square hole. Holes aren't meant to be square in any event. What bastard decided on all those frigging angles? Bloody squarist.
Back to the anger, the alienation, the suspicion.
Feeling murderous and armed with a drill for a number of years isn't healthy. I've ended up kind of twisted, head-wise, gut-wise, and I don't know how to straighten this out any more, or whether I should even try. Thing is, there was this one time when Jordan was really sick. The doctors, well, they couldn't make him better, stop the seizures, get him above a three on the coma scale. I asked a healer to come see him, she did some stuff I couldn't understand and then turned to me and said “He's in there, but you've got to go get him. He's very frightened and really lonely”.
“Yes, you've got to bring him back.”
“How do I do that?”
She touched my hand … I sat by his bed all night, eyelids pinned open with matchsticks, WILLING him to come back, I've never wished so hard in all my life, and he did, come back, sometime round about dawn. The first word he said was 'Mummy'. That's my boy. God, that's my boy, tough little bugger, just like his mum, balls of steel, doesn't care what the odds are, what anyone thinks or says, doesn't give a rat's ass. I fight so he can fight to stay alive. I fight so he can have some quality of life. I fight because I don't know how else to be, what to do with it all, where to let it out or how to direct it. I'm like an AK 4fucking7, useless at targetting, loud and noisy, but you can drag me through a river, lose me in mud, get me covered in sand, and I'll still fire bullets, all over the place like, but it's usually sufficient for some purpose or other.
It's changing though. They got us to do this exercise where we had to pick out a postcard from a selection on a table. I chose some African art, man emerging from a stone. I don't really know why. One of the other parents chose a beach scene at sunset. He was talking about it and said 'it's because it reminds me that there's beauty out there'. I couldn't stop the tears. Bastard. He looked over at me and he was crying too. I guess we're all casualties, casually, by accident, in our own way.
I decided to buy myself some rose tinted spectacles, not metaphorically, literally, pink ones, round, £2.99 from some dreadful hippy shop, utterly useless for stopping UV rays, totally wonderful if you want the world to take on a different hue, warm and friendly. I don't know if it'll work, but the physical tends to impact on the emotional in ways I don't fully understand. I've got a lot to learn.
And then I heard this, “We are the universe manifest trying to figure itself out”. What a thought. I'm composed of star stuff. Everything that has existed, does exist and will exist is part of me. Maybe I don't need to let it out or let it in, it's already there, doing its thing, working itself through. Suddenly I didn't feel so alone or as if I had to hang onto Jordan for grim death. There is no death, no struggle, no finality, end or beginning, it just IS. Scary as shit, to be everything and nothing all at the same time. Got to be open though, got to let go, work with it not against it, but I don't know how to be vulnerable, how to accept, what will happen if I stop fighting. Won't there be a big hole if I give up the anger? Perhaps there's a hole already, where I've been eaten away. Does it work like that? I don't know, I simply don't know, but in the words of Otis Redding:-
“But there was a time that I thought
Lord this couldn't last for very long
But somehow I thought I was still able to try to carry on
It's been a long long time coming
But I know a change is gonna come
It's been so long
It's been so long
To live too long
But a change has gotta come
So tired of suffering and standing by myself and standing up alone
But a change has gotta come
And I know
And you that
And I know that you know
That a change is gonna come”.
I've taken my fingernails out of my forehead.