The importance of finding time to curate my bubble of joy by Sue Jackson

A head injury or a stroke is an event, but the recovery is a process, and quite a long, drawn-out process for all concerned, not just the person with the brain injury. We’re about eighteen years on from my husband’s brain injury and six-and-a-half years on from his stroke. While the majority of the time my focus has to be on the day-to-day and sometimes moment-by-moment reality of trying to work full-time whilst also being a sole carer for someone with multiple cognitive impairments, at the start of the year I try to make time to stop and reflect on what I’m finding most difficult to cope with and how I might explore finding ways to help myself deal with it better.

A long time ago I read a wonderful book by Mira Kirshenbaum called The Gift of a Year. In it she talks about some of the problems facing women. According to her, mine is the gender that is expected to put other people’s needs first, but in the process of running around subsuming ourselves to facilitate the lives of others we end up putting our interests, hobbies, dreams and ambitions onto the back burner. She points out that we can have so many things on the back burner that stuff starts falling off, and thus we lose important parts of ourselves.

Starvation from those things that matter to us, be they mental, emotional, physical or spiritual in nature, leaves us with a profound lack of energy, vigour, vitality, and enthusiasm for life. Such inanition increases our vulnerability to stress leading to increased emotional reactivity, problems with decision-making and fatigue. If prolonged, it can lead to burnout. Our hobbies and interests, dreams and ambitions, self-care and social contact aren’t optional extras, they’re important ways of giving our lives meaning and are vital for our health and wellbeing. Lives without those things are tough, and all those affected require treating with compassion and forbearance. Something that seems like it is in increasingly short supply in our society. So, what to do?

In her book, Kirschenbaum suggests giving yourself a year in which you take small amount of time for yourself on a regular basis to do one thing for yourself. She suggests 15 minutes, which isn’t very long; indeed, it’s such a short amount of time that it’s difficult for other people to complain about. It doesn’t sound like it would be long enough for you to achieve anything, but if you read her book, you’ll be surprised at what the women who follow her suggestion do with their time and where it leads them.

Following Kirschenbaum’s lead, each year I try and identify a theme I think will be worth exploring. For example, early on there was the year of learning where I read a lot of books and other materials to educate myself about what had happened to my husband and how I could best support him. It would have helped if I’d been signposted to useful stuff by the healthcare professionals involved in his care, but that didn’t happen. Then there was the year of radical honesty where I experimented with expressing how I was feeling which unfortunately went slightly pear-shaped and ended up being dubbed the year of the f-bomb — hmmm. And more recently there was the year of grace and patience when I realised that having chosen to stay with my husband, I needed to learn how to stop being angry about what had happened to us to be able to explore various ways in which I could keep calm and carry on.

It’s not easy making yourself OK with something that isn’t OK. The stroke has changed my husband in lots of ways, and I’ve had to relearn his character and personality. Every single thing that we do, and every aspect of the way that we live our lives has changed. The mental effort involved in dealing with that has been overwhelming. Thanks to the stroke, my husband is more emotionally reactive and prone to stress and anxiety than he used to be, which can negatively affect his cognition, and if he sees me getting stressed it makes him worse. As a result, I feel like I have to spend a lot of time pretending that I’m OK even when I’m not.

There are times when it feels like this situation requires me to be the human equivalent of a self-pruning bonsai tree; containing and controlling myself as much as possible and getting thoroughly bent out of shape in the process. Because on top of having to work, run the house and provide his care, it regularly feels that if I want to keep him at optimal cognitive functioning, I’m only able to have reactions that he can cope with. So, no eye-rolling and sighing with exasperation when I’ve been told the same thing for the umpteenth time. No sub-vocal swearing because I’ve been interrupted so many times I now have no idea how I’m going to get my work finished in time. And certainly, no crying because I’m over-tired, I’ve got a migraine that feels like someone stuck an ice-pick through my left temple, and he’s forgotten the conversations we’ve had about what we’re going to be doing and he’s distressed and unhappy at being reminded and now his paranoia has come out to play and he’s accusing me of being deliberately unhelpful and wanting to make him look bad which makes me feel sick with anxiety that he could even think that. (And, breathe…)

Having managed to acknowledge, address and reduce my anger (and, yes, the associated effing and jeffing) about how we’ve both been forced to change, I decided that my theme for 2024 needed to be something more positive, hence the year of curating my bubble of joy. This has turned out to be more than simply cultivating an attitude of gratitude, important though that is. And while reading (currently my only hobby) can give me great joy and is fabulous as a restorative escape at lunchtime or in the evening, it’s not a practical response during the day. For instance, sticking my nose in a book at the point where the cat has brought the bin over on himself and redecorated the floor with the contents in his pursuit of the cat nip that I’d chucked out because I thought it was way past it’s best isn’t going to work. This time last year I realised I need to work at keeping my humour muscles strong so I’m more likely to see the funny side of situations like that. After a year spent exploring the different ways that people find humour and joy in their lives, I find my older self is still as inspired by Billy Connolly’s joy in life and observational humour as my younger self was.

I’ve also discovered that while watching Billy’s back catalogue of films, stand-up shows and travelogues is a joy, passively watching and/or rehashing someone else’s material (which my brother and I used to do in the school playground to amuse our friends) isn’t as powerful as having my own brain get creatively humorous with what’s in front of me. Practise helps, and so I’ve taken to trying to give myself 15-minutes three times a week to work on writing funny stories. It means that when I’m doing routine tasks where my brain can wander and start ranting about how difficult things are, I can redirect it to thinking about my storytelling instead. As a sole carer my time is very limited and most weeks I only get the 15-minutes on a Saturday morning, and not always then. It makes such a difference when I have the time to do it that I will continue with it this year when my theme is ‘creating space’. Who knows where that will take me? What I know from previous years is that it will be interesting, at times challenging, and by the end of the year I will have learned a lot about myself and probably other people too.