“Three of these kids belong together, three of these kids are kinda the same. But one of these kids is doing his own thing, now it’s time to play our game…it’s time to play or game. Can you guess which kid is doing his own thing?”
I’m not one of the kids who belong together any more. When Trisha was still here, our ‘tribe’ shifted regularly for years, sometimes by our instigation, moving house/area, but mostly without us wanting it to. Now Trisha’s gone, I get the feeling my tribe is shifting again.
When Trisha was diagnosed, we were shifted out of our tribe. The wider group of people we associated with moved on as our lives diverged: we weren’t having children, we could no longer buy a house so house prices were nothing to do with us, we no longer had careers to tend. Our lives became run by MS and our topics of conversation were about medical tests, symptoms, treatments, care management, knowing the location of the nearest accessible toilet, wondering whether urine will come out of those trousers, the cost of dry cleaning, and so on. The good friends stayed but a lot shifted us along.
We shifted to people affected by MS, whether they be sufferers and their families/friends, carers, and so on. We’d go to MS Society branch lunches/coffee mornings in York, South Cumbria and the North East. Symptom sandwiches were washed down by a cup of shared care concerns and tales of embarrassing lapses in bodily control. As Trisha’s MS progressed, we’d have less in common again with the people going to branch events. It’s frightening to see someone deteriorate from the disease you have. Particularly when the statistics say that, one day, you’re likely to be in a similar position. When you’re the worst affected person in the room, as Trisha was, you know you don’t really fit any more.
Even with progressive diseases, you do come across people who are in a similar position to you. Your tribe becomes smaller but they’re there. You all get what it’s like to sleep with one ear and eye open. You all get frustrated by officialdom’s increasing lack of understanding for your challenging circumstances. You all share the same worries about the future that none of you have or can plan for. You all hate the state you’re in but fear the alternative. It’s a long and stressful tightrope to walk. I fell off.
When Trisha died, I stopped being a carer. When I talk to people who are still caring for loved ones with MS, I can sense a subtle shift in the dynamic. I’m not saying I’m being shifted, far from it, these people are dear to me. I’m just becoming very aware that my position has changed. Whilst I have the history of being a carer, I’ve moved from that to somewhere else. I’m the widower of an MS sufferer who died. It’s a completely different place. I no longer have to watch a loved one suffer, juggle the constant demands of being a spouse and carer or worry for the future of someone who depends on me entirely.
I’m free of those feelings now. Others have taken their place. I miss Trisha, I grieve the life we had, especially in the early days we were together, pre-MS. I even miss the later, crap years. It’d mean she’s still here. I’d still have a greater sense of certainty of who I am or, at least, what role I had. I guess my natural ‘tribe’ is different now. I’m not trying to replace those who’ve stuck with me throughout, I’m trying to add to them. I’m a widower without children: I have a new title, a new role in life, even though I don’t really know who I am. (As an aside, is it just me or, when you look at how the death of a spouse is covered in the media, does grief only really count when the couple have children? Is my grief as a non-parent somehow lesser than the grief of a widow/er with children? We’re people too, you know? We loved, we lost, we hurt. But I digress. Again.)
So, here I am, still figuring out where I sit in the grand scheme of things. The upside-down kid among the right way up kids.