Going out. Hooking up.
This week we had the first meeting of a Sheffield support group for families affected by Huntington’s. When I say “we”, six people turned up and only three of us were actually local. And one of the six was Diana, our regional advisor, and another one was a man who we gradually realised had nothing to do with HD at all but had heard me talking on local radio earlier and just rocked up for a cup of tea and the craic.
But hey! You’ve got to start somewhere….
The Salvation Army had given us a cavernous room set out like a lecture theatre with a tea urn at one end and a flip chart at the other. We huddled together at the tea end and chatted, awkwardly at first. Why have we come here and what do we want out of a support group? And are we really in such a minority to want a support group at all?
I can see why people would not want to get involved. Huntington’s is like a tightrope that you walk along precariously, not daring to look down but keeping your eyes on the middle distance (maybe this is a terrible analogy as I have never walked a tightrope and don’t have the slightest intention of doing so.)
The tightrope is also like a perpetual conveyor belt taking you somewhere you don’t want to go. You know what is ahead but you can’t focus on it because you’ve got to stay upright in the here and now on this spot. So in any group of people with HD there is always going to be someone at the next stage along and it’s like seeing your future, not in a good way.
Nick had wanted to come, though, and I guess we’re at the “nothing to lose” stage – he knows he can’t pretend he’s not ill, he’s in a wheelchair and can’t stop moving and his hands and feet bash out of their own accord every few seconds. But this is how it is, and he’s come to terms with that and doesn’t want to hide any more. As a result, he doesn’t get half the stares and comments that he used to. Now, if anything, people are accepting and often gravitate towards him as someone interesting to talk to.
I took him to the theatre yesterday; he had really wanted to go, and I thought it would be a nice thing to do for us both. Which it was – but coloured by the phenomenal strain of sitting beside a person with HD who can’t keep still in their wheelchair, whose wheelchair is creaking and croaking like a ship in a high wind, and moving slowly forwards and downhill on the carpeted slope. I realised that I just hadn’t thought this through at all. He could not get comfortable. With every fidget and shudder the wheelchair would jolt forwards or sideways another few inches, and every few minutes his arm or a foot would lash out and I was terrified he was going to whack the woman on his left.
I was supposed to be on his left but he kept moving away, and so every few minutes I would yank the wheelchair back and vaguely into place. Hanging on to the handles and crossbar with both hands, as if in a hurricane now, it took all my strength. Never mind “Macbeth” on the stage, the real drama was happening right here.
I genuinely thought someone might complain, as happened with the autistic boy recently in the cinema, but everyone was so kind. The ushers were fantastically helpful and when Nick (to my amazement, as the first act finished with me sweating and spent as if it had been me on stage) said he was having a great time and wanted to stay, I asked if we might possibly sit in the box. They were so kind. Nick had to negotiate a couple of steps up there but it meant he had a choice of two seats, the wooden chair in the box or his wheelchair, and we were on our own and not barging into anyone, and the poor people who’d been behind us could have an unrestricted view.
The ushers settled Nick in his new seat while I went back to get our coats and make my apologies, and by the time I got back to him, a woman who’d been right behind us was next to him in the box engaging him in deep conversation. I had thought she’d be really pissed off but she was sweetness itself, telling him about the restoration of the theatre and asking him how he was enjoying the play. Afterwards we had several people smiling and chatting to him almost as if we really were VIPs emerging from the Royal box.
So, I’m glad we did it. I have an ache all down my side and bruised hands and arms from the holding on for dear life, but Nick had a fabulous afternoon and actually so did I, but don’t ask me to do it again any time soon.
It’s the Nick factor though – continual small crises (and sometimes big ones) combined with an unusual charm that seems to draw people in. There is rarely a day without incident (he went to the theatre with one hearing aid as the other one had broken for the third time in a week, what with his flinging it across the table when he takes them out. He has already snapped the robotic arm for the remote control that was replaced yet again two days ago. And at nine o clock last night as I was lying blissfully in a steaming hot bath at home, I got a call on the batphone saying that he had broken his aerial (how???) and couldn’t watch TV.
This is Huntington’s. This is our daily reality, and there are variations on the theme for everyone, but it’s why I feel the need for a support group – just to tell someone, just to have someone else say, yes I know what that’s like. There was someone there at the meeting on Tuesday who didn’t have that with anyone else, and I so felt for him.
So we decided that we would keep meeting, even if it’s just three women and a dog for the time being, and knowing that a lot of people don’t want to be involved because they’re only stepping on to the ladder up to the tightrope and really don’t want to have to face these problems just yet.
We’re going to do some fun stuff. Food seems to be the main theme for the moment, and being around animals, and maybe (God help us) some singing of songs. It’s like the first tentative going-on-a-date where you just need an activity alongside the real business of getting to know each other.
Get in touch if you want to join us, or if you already belong to a group and have any tips. Just please don’t suggest the theatre – although, having said that, panto season is coming up and perhaps that’s one place where audience participation and a comedy wheelchair will be actively encouraged.