chapter sixteen: follow up

At twelve months follow-up the longitudinal aspects of the project are becoming apparent in the absences and changes amongst the group. Dave wasn't there, for example. 'Dave from Dundee the Scots Amputee' as he became known to us couldn't make it, on account of he died. He died as he lived, though; in another car crash. Trapped by his prosthesis he unclipped the leg and crawled out into the road only to be collected by a passing truck.
And Sara (without an 'H') has exercised her right to withdraw from the study. We're told this by Sarah (with an 'H') who knows the neighbour of the therapist's boyfriend's best mate who heard from one of his football team whose sister works there that Sara was an in-patient at the local loony bin. The audit trail was a bit cold by the time we got the information but the shiver that went around the group wasn't entirely down to the cold room we were booked in.

Jo was there again though. I saw her at six months when I wasn't being very sociable and we exchanged a few desultory emails but nothing since. But for the last week since the date has been creeping closer through my day per page diary that I nicked from the therapist's office last time I've been wondering what she'll be like, in terms of recovery obviously.
And when she walks in, well sways is more apt, it's clear she's in good shape. For most women losing weight would be a bonus but Jo has put some weight on and is looking all the better for it. She has a shape, a body and the corporeality of it transforms her from a patient to a person. She hasn't so much recovered as been cured. And she's either been on holiday or a sunbed.
The other women immediately crowd her in a protective huddle, probably curious and jealous in equal measure. My old mate from the very first meeting looks over at me and rolls his eyes to the ceiling. I don't think we've exchanged more than a dozen actual words but we communicate well enough. He still walks with a limp and the facial tics are more pronounced. On the online message board he informed us that since his wife had died (breast cancer). He's taken early retirement (from the Dept of Work and Pensions) and now does voluntary work with a charity for kids with acquired impairments. I posted a few things myself and even made some contributions on a blogging site, for all the good that did anybody.
When everyone turns up we're a round dozen. Then the therapist comes in. That's Eric. Or Dr. Eric. Dr. Eric Bristol, BSc. PhD, to give him his full title. Well, it's nice to know that some people can make a success out of the shit that hits the rest of us. It's uncharitable perhaps but I can't bring myself to congratulate him. He wrote to me asking permission to quote from my blog but I turned him down. Well, it's not like it’s held him back. But then he got in touch with another angle and I felt I could probably work with that so here we are again, happy as can be?

I certainly wasn't happy with life at six months post op. The research project just felt like a slap in the face and a reminder of all that had gone wrong in my life. I started to feel very negative and angry and the support from the support group didn't always feel...well...supportive. There were too many private issues and agendas. Everyone seemed to be trapped in their recovery and the privacy of the process militated against sharing the experience .
It was about that time I started with the diary. It didn't feel like it was much use at the time but then somebody suggested I use a star chart. Fucking hell! A poxy star chart. It sounded preposterous; like being back in primary school. But you know what; it worked. I could see the patterns developing and I could get some control of the mood swings, the depression and the angry outbursts. And crucially I started to appreciate that I was in denial too, although I'd have denied it at the time, of course.
The whole on-off thing with Caroline was pivotal. Sometimes I felt as if I couldn't live without her and then a quick look at the map convinced me I couldn't live with her either. We tried though. Look where that got us. Now the whole world knows what kind of mess I was in.

That’s when I got the email from Eric inviting me to continue the project with a view to taking a leading role in the 12 month follow-up. I wanted a new start. I needed a new start and this was it. I was sceptical at first but I went along to an open appointment type session and things went well. I opened up a bit and he told me about his plans for the project and when the cleaners started to sweep up round our feet and empty waste bins noisily he suggested a beer at Hannrahans.

I must admit to having warmed to him a bit since we shared that taxi after the pub. He told me he was a twin. They were crossing the road, him and his brother, aged twelve, going to their aunt's who lived locally to show her their school photos. The car pulled out from behind a bus and accelerated just as Gordon stepped into the road to check for traffic.
'He was always the more active one, y'know, much more athletic, good at P.E., played football, did gymnastics. I was the geeky student. Head in a book, usually a dictionary or some kind of reference work.....He deliberately told me to stay on the kerb. Always looking out for me.
'Well, he did a perfect cartwheel. Just perfect. Crap landing though. No style. Face down in the gutter....broken neck, fractured skull, and a kind of surprised look on his face like he shouldn't really have been there. His school photo was in his hand, or it was in his hand when the car hit him.....'
Eric hands are shaking so much he spills his pint here and then spends two minutes apologising to nobody in particular while he mops it up with beer mats.
'Sorry', he says, brushing an invisible trace of Stella off my jeans.
'Sorry. Anyway......the photo had flown up into the air and it fluttered down and landed on his chest. It looked like a scene from one of those movies where the dead are identified for the relatives in case they can't recognize them.
My mum was standing across the road then. She'd come dashing out when she heard the brakes and the screams. I don't remember any of that. It was completely silent in my memory. She stood on the opposite kerb and she looked at me with what must have been pure hate. She always liked Gordon better. And I just stood there and cried while my brother went cold in the street'.

The traffic outside makes the windows shake. The couple at the next table are trying to look like they're not listening. I'm trying to think of something to say that isn't completely useless. Eric saves me the effort.
'You don't need to say anything. Not to me anyway. Everybody has their story; everyone has their reasons. I suppose I went into this line of work because of what happened to Gordon. I didn't consciously set out to be a grade A student but after that I just went for it. I couldn't compete with his energy when he was alive. I couldn't compete with his memory when he was dead. So I studied. And here I am'.
I look up and can see the taxi driver asking at the bar where his fare is and I gesture to him with the pint glass to meet us outside in two minutes. He nods and points at his wrist.
'Now you said you weren't keen on the follow up when I emailed you last time......'
I started to interrupt but he waved it away.
'No. It's ok. Remember, everyone has their reasons. But you have your story too. I know there's more to it than you've let on and that's ok but you've got a contribution to make. Think about it at least, huh?'
We drink up and go.

That was immediately after the six month follow-up. Now we're getting ready for the annual review. Eric is enjoying his new role as director. There's a new cohort of patients, all coded, ethical clearance approved, and ready for the meeting. Except this time they won't be watching Jim the biker cop; we've got them a new film to watch.

The technicians are out front making sure the connection with John Hopkins is ok for the video link. This is now part of an international initiative and I know Eric has his eye on a little lady from Baltimore so there's added incentive for him. Well, good luck, fella.
But before the show goes global the old gang are gathered again. Eric's already given us the psychological argument but it's superfluous now. We're here because we want to be here. We're here for each other. We've been through the storming, the norming and I think we've even gone right past the performing phase of group work. This has the feel of a High School re-union and we all have one more job to do before we move on to the next part of the project where we get to buddy up with one of the new people. Our last official job is to tell our story as journey. I say official job because thanks to a big ESRC grant we are now being paid as 'expert patients' and will receive credit, though not copyright, when the book deal comes out.
Despite this carrot four people have taken the fifth amendment. There are three drop-outs and Sheila can't make it cos her daughter's about to give birth. We have fifteen minutes each. There's five of us left. Work it out for yourselves. Just like the first time I'm on last.
We begin with a moment's silence for absent friends. I shouldn't but I can't help but think of Caroline. I shake my head to clear away the uncharitable thoughts and concentrate instead on the people who should be here now.

Observances made Jo is first on. And despite her outward appearance she is not so good. I know this because…..well, ok, I admit, we went out on a 'date' once. Date is perhaps too grandiose a term to describe the evening. We had been taking part in one of the web based fora that the project organised. It was a mediated event with one of the psychology post-grads convening the meeting. Everyone seemed very down.
When that was over we both went into one of the private chatrooms and she told me she was feeling very low at that point. Well, I was feeling vaguely chivalrous so I asked if she'd like to meet up and talk, in realtime. I imagined she might say yes but I thought this was an offer for future consideration.
'Go on then,' she said. 'You've persuaded me. You still living up by the park? How about we meet in the Palace? Half an hour?'
What could I say? By the time we got back it was close to midnight and I'd learned that she lived alone, was divorced with two grown up kids, one in work with the civil service in Carlisle and the other at university in Salford. Her ex was an architect, her neighbours were great and she ran her own furniture design business from home. And home was in Totley. Oh, and that she hadn't had sex since two months before her accident. I was still doing the maths when she almost choked on her coffee. She blushed.
'Don't know why I said that', she offered. 'You must think I'm terrible', and with that she made a move to grab her handbag. I thought she was about to go but she took a tissue from the bag and blew her nose. For a minute I didn't know if she was having an allergic reaction or was laughing at the sheer ludicrousness of the situation. She was crying.
'All the time I was in hospital I was thinking I might never have seen the kids again. Is that selfish? I didn't care about anybody else and after a while I didn't care about them either. I couldn't even be happy I was alive and I even tried saving my tablets till the sister found the stash and I had that interview with the psychiatrist, you remember?'
We all remembered. She was such a popular member of the group any absence was a loss to us, however temporary. She was beside me on the settee by now. Poor cow. Confessing suicidal feelings and all I could think about was where the condoms were and was I really up for this.
'The psychiatrist was pretty good actually. She said the group was doing me good and she didn't write me up for any meds. In fact she took me off the Prozac'.
'You were on Prozac?'
'Oh, yeah. We all were. Except you.......Sorry. I saw your notes'.
'Oh'.
'Sorry........ Sounded like a bad accident'.
She snuggled into my side.
'You want to talk about it?'

At about three a.m. I noticed her breathing had become very quiet and slow. What a result. Bored her to death. Great seduction technique.
I went to get a duvet from the cupboard and tucked her up and turned out the light and went to bed. The alarm said 03.15 when she crawled in beside me. The next time I looked at the clock it said 10.21 and there was an empty space beside me and a note beside the phone. Do you call that a date?

Eric gets the thumbs up from the head techie and goes out front to address the assembled cripples while the pictures from Massachusetts filter onto the screen.
Spiel over he synchronises the video clip and the trans-Atlantic audience settle down for the show.
The lights dim. The screen glows. The commentary begins.
'Gary was a university lecturer. He lived in Sheffield.’
And here a map is superimposed over the commentary, no doubt for the benefit of the American audience.
‘His girlfriend lived in Guildford in Surrey, south west of London. The trip was 300 kilometres exactly, door to door. They both got to know the M1 motorway pretty well..................'

The whole performance lasts for fifteen minutes. My allotted span of fame, as predicted, and for the last ten Jo joins me at the back of the auditorium. We hold hands and pretend it’s the cinema.
After the show is over everybody is at The Red Deer, crammed into the corner furthest from the toilets and nearest to the bar. Good beer, comfy seats; it's brill. Then there's the briefest lull in the self-congratulatory hubbub and old Alan, my mate, has to go and ask the question......

'Oh petal, you were having those black outs, weren't you?', bleats Mary. She's one of the medical admin staff. Knows more about our collective medical histories than the entire professoriate of the combined universities put together.
'Oh, don't, sweetheart! Don't you say a word'.
'He can't chuffin' remember it anyway', says her brassy young accomplice. 'What do they call it, a fudge?'
'A fugue state, Clarice. A fyoooooooog state', corrects Mary. 'If you're going to read confidential records at least get the terminology right, dear'.
'Yeah, well, we could all do wi' a laugh, so go on the Gary', and at this point Clarice holds out an empty Breezer bottle like a microphone.
'You could make it up and we wouldn't know the difference anyway, mate', says Alan.
They all laugh. Bastards.
'Ok, somebody get me a pint of Stella and I'll tell you the bits I can remember. I'm sure it's therapeutic'.
'Hold up' says Eric, fishing in his pocket for the mini cassette recorder he always carries, 'I can feel a paper coming on'.
Nick arrives at that point and with the whole cast assembled I feel it's probably the right time to finish the story.