CHAPTER TEN
The Long Climb
Sometimes, it takes time away to appreciate all that you have. We had another brilliant holiday up north with family. We visited the same old places we always visit, but this trip was different. I’m not sure what it was but, after everything that’s happened, those few days away made the world seem OK again. After months of reading and writing reports and assessments that endlessly detail all that The Boy can’t do, I’d forgotten to keep looking for everything he can. And it made me realize that if you spend your life focusing on everything that’s wrong, you might just miss everything that’s right.
While we were away we revisited an aquarium we’d been to when The Boy was younger. He didn’t remember having been there before, but I did. He was around six and, having spent £20 to get in, we spent a total of twelve seconds in there, with him shouting one long ‘NEMO!’ at the top of his voice as he ran the length of the place before we exited out to the daylight at the other end. This time, the darkness didn’t bother him so much and we stopped to look at each tank, taking everything in – we even sat through the sea-lion show. I hadn’t noticed it before, but there’s an inquisitiveness to him nowadays, a desire for knowledge that was always missing as a toddler. And as I looked around at the enthralled three-year-olds sitting around us watching the sea lion jump for the ball, I realized our lives weren’t so different. I can’t quite explain it, but in some ways it just feels like we’re living our lives on a different time trajectory to everyone else, that’s all. Like The Boy will get there eventually – he’s just following a different path.
There was so much we did in those few days. We caught up with family we hadn’t seen for a long time. Their reaction to seeing The Boy is always the same – they’re always struck by how much he’s grown, but also by his similarity to me. Despite how often I’m told it, I can never see it myself, but apparently we don’t just share the same dashing good looks, but the same mannerisms, even the same sense of humour. Nowadays The Boy’s mum often refers to him as Mini-John. How blessed he is.
We went to a barbecue where The Boy had his first go in a hot tub and then refused to get out until his skin had turned blue. And, back at Nana’s house, The Boy played endlessly with Monty the dog, lying on him, pulling him, and apparently teaching him to ballroom dance.
Magical times.
But the highlight of our holidays were our trips to the seaside together. Short day trips away – the seaside was only twenty minutes from Nana’s house. And those days with The Boy reminded me of my own childhood more than ever.
We went on an open-top bus tour and had the whole top deck to ourselves, trying to scream as loud as we could into the wind.…
A seagull nicked the Boy’s chips on the seafront as we sat and watched a Punch and Judy Show, then I wheeled The Boy along the pier in his wheelchair, racing unsuspecting old people in their mobility scooters. We found an old joke shop Dad used to visit as a little boy, and we bought some fake poo and a fart whistle. Neither of us knew what a fart whistle was until that day, but it’s become such a part of our lives since that it now seems strange to imagine a world without it.
But the highlight of it all was when we returned a few days later. When we go to the seaside we usually park outside the George Hotel – named, apparently, in honour of The Boy’s cousin. Well, this day there were no spaces, so we found ourselves in an unfamiliar part of town. As we were walking along to the seafront, I spotted something – a fish and chip café I remembered going to as a child that I thought had long gone. Thirty years later, there it was, on the corner, where it had stood all this time.
The Boy didn’t need any convincing to go inside. His escapade with the seagull a couple of days earlier had put him off al fresco dining for life. We took a table in the corner, exactly where we’d sat as a family, a generation ago.
And it was there, in that café, that I finally saw what everyone else has been telling me since The Boy was born. As he tucked into his fish and chips he looked up at me and grinned. How had I missed it for so long? It was plain as day. Sitting opposite me was me as a child, exactly the same age. Unmistakable. Smiling away, looking up into my dad’s eyes and knowing there was no place on Earth I’d rather be.
And as I sit here writing this now, I can hear my dad’s voice once more, bringing me back down to earth with a bump. ‘How much? Eighteen quid for two portions of fish and chips!? Christ on a bike, son, you’ll never be me.’
MY SON’S NOT RAINMAN BLOG
Daylight. Sleeping. Screaming. Olanzapine. Tests. Hospitals. Line up. Therapy. Making good progress. Scared. Laughing. Government agents. Lamotrigine. Day release. Voices. Fear. Smiles. Kindness. Canteens. Medication trolleys. Lithium. Surreal. Doctors. Brain scans. Paranoia. Nightmares. Despair. Venlafaxine. Spies. Tremors. Relapse. Home treatment teams. Dry mouth. Fifteen-minute observations. Psychosis. Risperidone. The black mouse. Reality. My Boy. My beautiful boy.
Over the next two years I was in and out of three different hospitals. I heard voices, I saw things that weren’t real, I had moments where I was the Lord of all creation and then returned to the absolute nothing of nothingness. I spent my time on locked wards, under twenty-four-hour observation and, finally, thanks to an incredibly generous and understanding employer, sitting side-by-side with D-list celebrities in therapy sessions in a private psychiatric hospital.
I was given numerous diagnoses from different experts in those two years. Psychotic depression, schizophrenia, schizo-affective disorder. In the end, they settled on bipolar disorder. I didn’t really care what label they put on it – it didn’t change the lithium or huge doses of antipsychotics I was put on. Turns out, if you’re a big bloke, it can take a fair old dose to reach the desired effect. I resented taking their medications and maybe recovery would have come quicker if I hadn’t. But I could never quite explain it to medical professionals, this need to see how I felt without mind-altering medications. I was forever trying to stop taking them, simply because I needed to know if I could get back to me. I mean, the real ‘me’, the ‘me’ I was before it all started. For quite some time, I couldn’t.
Sadly there’s no ‘cut’, ‘copy’ and ‘paste’ in life, no matter how much we might wish there was sometimes. For so long all I ever wanted was a window to pop up to ask, ‘Are you sure you want to delete 2005–7 and all its contents?’ And never has that been truer than when sitting here in front of Microsoft Word, knowing that with a few clicks I could just erase this chapter and the chapter before it. But happen they did and the ramifications of those events continue to this day.
There are so many memories of that period flying round in my head – all disjointed, all muddled up. I remember being in one hospital endlessly laughing with other patients as we sat around one evening watching One Flew Over the Cuckoo’s Nest in the TV room, casting each other in the different roles, the irony of our surroundings making it all the funnier. I remember the kindness of nurses who sat with me at 4.00 a.m. while thoughts swirled around my head, never quite making the journey into words. And I remember the air ambulance landing one afternoon, sadly too late for the fellow patient who found their own exit route in the bathroom with a razor blade.
I mentioned earlier that I don’t know the impact of that time on The Boy. He was around three years of age when it all began, too young to remember most of it, I think (and secretly hope). Every weekend he came to visit me in different hospitals, never on the ward, if I’m honest because I didn’t want him seeing the other patients. They were mad – not like me. Invariably we sat next to fish tanks in waiting rooms or, as I got better, in the garden or we went to the park. I looked forward to Saturdays more than anything. Without fail, he’d arrive with his mum. His smile, picking him up, me burying my nose in his neck, the smell of him bringing me closer to reality than any antipsychotic or therapy session ever could. He smelt of home.
I’ve probably said enough. This book, this story – it was never really meant to be about m
e. I don’t want to whitewash what happened, but I don’t want it to take over everything either. For now, it feels right to leave it there. My recovery from those days of mental illness has been a parallel story, not necessarily a different one. I should state that at the time of writing this, I’m well and have been for quite some time. I haven’t taken any medication for around seven years and I’ve not seen a psychiatrist in over four years. There was no miracle cure – I’m still far too sensitive, prone to mood swings and rubbish at relationships. And, although it pains the working-class man in me to say it, a long time in therapy helped.
It took a while to get used to the process. Sitting there, banging on about myself for fifty minutes. I never told anybody for years where I was vanishing to – sneaking away to spend my time in tiny consulting rooms that always looked identical; two IKEA chairs, a sign about confidentiality and a strategically placed box of tissues. Slowly, over time, with a psychotherapist I learnt to both love and hate in equal measure, I began to make sense of stuff. And maybe that’s the word to best describe what happened. Stuff (I’m sure there’s a more eloquent way to put it, but please bear in mind I originally wanted to write ‘shit’, so let’s look on the word ‘stuff’ as an improvement).
No matter how much I tell myself that what happened wasn’t my fault, every now and again I still feel a pang of guilt from that period, although not so much nowadays. Such is the stigma of mental illness, I suppose. With or without his autism, I will always wonder about the impact that my strange behaviour may have had on The Boy during such an important developmental stage.
As children we often look up to our parents and think they’re going to live forever. We place our hand in theirs and know the world will be OK. It’s only years later that we get a sense of their own fallibility, their own weaknesses. Other people are so often right – there is so much that binds me and The Boy; the shared sense of humour, the impulsiveness, even the same little birthmark we both have. But maybe the biggest thing we share is often overlooked by everyone. It’s our vulnerability.
CHAPTER ELEVEN
Separate Lives
I’m appalling at DIY. Appalling. If ever anything breaks in this house, the best The Boy can hope for is that his dad will write a very nice letter of complaint to someone. I don’t own a toolkit. Somewhere in one of the kitchen cupboards there is a hammer. In the dark recesses of the airing cupboard there might still be a spanner. The screwdriver hasn’t been seen since it was used to change a battery at Christmas.
Last year we ordered a new sofa. It arrived, and then I realized I had to get rid of the old sofa. I was going to freecycle it, but after endless Power Ranger battle re-enactments, it was no longer fit for human use. It was time to send it to the sofa graveyard.
The local council wanted £15 and two days’ notice to remove it. Fifteen quid! Two days’ notice! Looking back now, it seems a reasonable amount. At the time, though, I thought it was a rip-off. I’m not paying that. I would get rid of it for less. I was a man. With a car. It couldn’t be that hard to chop up a sofa small enough to fit into a Toyota Aygo. I would chop it up and take it to the tip myself. Like a real man would.
To keep costs down, I decided to do it all in one car journey. I began by smuggling out the cushions and backs with the other rubbish. I had to do it carefully, so as not to raise suspicion from the bin men. As in The Great Escape when the heroes tip the rubble from digging tunnels out of their pockets as they walk, I hid a cushion in each bin bag as I left them out. After just seven weeks, I was left with only the sofa frame standing upright in the lounge. What a winner.
I could still have paid the £15 but that was, of course, for losers. All I needed was something to chop up the frame. I went to the supermarket, where all the top men go for their DIY supplies and bought a handsaw for £5.99. I came home and started hacking at the frame. I was shocked to discover that it had foam inside it. I never knew. And it turned out you couldn’t cut foam with a handsaw. Or nail scissors. I nipped back out to the shops and picked up a pair of big scissors (I think that’s the technical term for them) for £3.99. Oh, and I needed some strong bin bags, of course, to put the bits of sofa in. I’d need the really strong ones – £4.29. I think I must have ended up putting the big scissors in one of the bin bags too, because they haven’t been seen since.
I continued hacking away. Sofas are stronger than you might think. After another couple of weeks of work, I managed to saw it in half, so it now took up double the space in the lounge and the handsaw was knackered. That’s OK, I thought, I’ll buy a jigsaw. I reasoned that it would come in handy in the future if I ever needed to chop some furniture in half again. I went back to the supermarket – £17.99. That’ll show the council and their extortionate fifteen quid. It cut the wood brilliantly.
I made another shocking discovery a couple of weeks later. Sofas have things inside them called ‘springs’ and springs are made of metal. My jigsaw wouldn’t cut through metal. And I know, because I tried. After another few weeks of research, I went to the local hardware store to buy some metal cutters. They cost me £19.99, but that didn’t matter, because by now I was a man possessed. I would show the world that I was a real man. A real man capable of chopping his own sofa into pieces if he chose to.
Today, it is nine months since the new sofa was delivered. And, as I write, the last remaining bin bag of the old sofa sits next to me, ready to be removed. In just 273 days and at a total cost of £56.54 (I needed more bin bags), I have won the battle. I have successfully stuck two fingers up to the council and their rip-off fifteen quid charge.
I’m only telling you this story because sometimes The Boy will act in a certain way and people will say, ‘Oh, it’s because he’s autistic.’ Well, it isn’t. Not always. There will be periods in his life when The Boy will do some really, really stupid things. And sometimes it will be nothing to do with his autism. Sometimes, it’s just genetics.
MY SON’S NOT RAINMAN BLOG
My wife and I separated in the summer, not long after The Boy’s fourth birthday, a few months after my final stay in hospital. It feels like I should state, ‘There were no other people involved,’ as that’s what’s said at moments like this. But there was very much someone else involved: The Boy. There was an unbearable sadness on both parts. If nothing else, sadness that we’d let him down, that we were no different from anyone else who’d said they ‘couldn’t meet his needs’. People have asked if it was him, if he was the cause of the marriage breakdown. No. Absolutely not. Circumstances didn’t help, certainly, but it could never be him. Whatever the reasons, they were only connected to his mum and me.
It was a difficult time in lots of ways. I went to stay with my mate Greg in north London. He and his lovely wife Susie put me up for a few weeks. And it’s so true what they say: you don’t realize what you have until it’s gone. I’d have done anything to be woken at 5.00 a.m. by the sound of the Disney Channel. I missed The Boy’s cry, his laugh, his smile, his screams. I missed picking dried-in breakfast cereal off the ceilings and walls. I just missed him.
Every Saturday I’d make my way across London on the bus and train to see him. And each Saturday I’d take him out because that’s what dads do on their weekend visits. Part-time parenting. We’d trundle off on a bus and then go and sit in McDonald’s for seven minutes, as that’s about how long he could sit in one place in those days. Then we’d get up and look at something else. We’d go to a museum up the road to look at the fish in the aquarium. Most children would wander round there for an hour but we were in and out in four minutes. Museum done. Truth was, we both hated those Saturday outings.
There are all kinds of experts who have written that those with autism have a lack of empathy, how they have no ‘theory of mind’ and fail to imagine a world outside themselves. Personally, I think it’s a load of bollocks. If anything, it has always felt like The Boy is too empathetic. He’s always fed off the moods around him. I’m constantly having to watch the pitch in my voice, ensurin
g it doesn’t sound angry or sad as he will react. Those Saturday outings were miserable for both of us. And they were miserable because I was miserable. As parents, we make the weather in all this, I have no doubt about that.
That said, there was one brilliant bright spot during that time that’s definitely worth talking about. It was on those long, cold Saturdays that we discovered The Boy loved a train ride. There was something reassuring about the noise they made, the movement of the carriages, the fact they never deviated and always followed the same route. Or perhaps I’m playing the autism card, as that’s what I’ve read those with the condition like, and it was just because sitting on the train was a whole lot warmer than trudging the streets. Or maybe he just liked trains. Lots of kids do. Living in London has its benefits now and again and one of them is that if you like a train ride, you’re spoilt for choice. Granted, there’s often a replacement bus service in place at the weekends, but for the most part trains shoot off in every direction all of the time. But there was one route in particular that stole his heart – the Docklands Light Railway.
Now, let me explain for the uninitiated, the Docklands Light Railway has trains with no drivers. That’s right, a driverless train. Who wouldn’t get excited by that? It’s known as the DLR for short: Disney’s Last Ride. I accept that there’s no driver because of the technological advancements that have been made in railways. But to a four-year-old autistic boy and his immature father, there’s no driver because that work of beauty standing on the platform with its red livery is a Magic Train.
That’s right, son. Your dad loves you that much that he’s taking you for a ride on the cheap-as-arseholes, warm, Magic Train.
There’s only one seat to be had on a train with no driver, of course, and that’s the front seat. As there is no cab in the DLR trains, you can sit at the front and look straight out through the large windows onto the track as if you were in the driver’s seat yourself. The two of us waited on the platform in pole position and, as soon as the train doors opened, we flung pregnant women out of the way to get to the seat.