I’ve been feeling sad this evening. I’d not planned to write about it, mainly because I couldn’t work out what I was feeling or why. But as I got ready for bed I was thinking about my day and I finally worked out that frustration and longing were at the centre of this sadness.
For the last twelve years I’ve been a playworker. Every summer’s been dominated by busy, varied days, hanging out with kids. This year’s no different but I’m finding it much tougher than I’ve ever done before. It’s drawn into sharp focus the current limits of my body.
I would always have said patience was a key skill for this type of work but never before have I needed patience to the same degree – patience not with the children but with myself.
My tics mean that everything I do takes more time. Every movement needs to be planned and communicated to someone else, and if I do this badly or I’m not appropriately supported I quickly go from being a useful member of the team to being an additional worry for my colleagues. This is hard.
My frustrations are not limited to work. I really regret my inability to be spontaneous and self-sufficient – to pop to the shop because I fancy a bit of chocolate or to nip out and post a letter. People often say, ‘Not having any time to yourself must drive you mad.’ I realised tonight it’s not so much time alone I miss but more being able to do things without negotiation.
I don’t want to sound unappreciative. I’m given endless, amazing support, and explaining what I want to do and negotiating how to do it is key. The care and attention I get from my friends and colleagues enables me to do many things I couldn’t do at all otherwise. This makes me feel even worse when I let my feelings get the better of me and I’m short with people I care about.
The deterioration in my mobility isn’t something new. Exactly a year ago I was weighing up the pros and cons of getting a wheelchair but I don’t think I ever expected the difficulties to be so long-lasting. At that time my mobility felt like a crisis to be overcome. This year I know it’s something I need to learn to manage in a new way. To continue to be a good playworker, colleague and friend I have to develop different ways of living, working, and playing.
I can miss my independence and fret about being a nuisance as much as I like – it’s inevitable that sometimes I’ll feel sad. But I need to remember this won’t change anything for the better. A year ago I managed the challenge to my mobility with practical solutions, like moving house and getting the wheelchair. Now it’s time for my way of thinking to catch up. If I want to avoid feeling frustrated and unhappy I need to develop new skills, strategies and strengths.