A few years ago, sitting on an awkwardly-shaped plastic chair in a Medical Humanities seminar, I had one of those life-changing moments that are as thrilling as they are rare. Professor Neil Vickers, Professor of English Literature & the Health Humanities at King's College London, was speaking about people becoming sick and those around them pulling away, retreating. As a group, we discussed this phenomenon, and whilst I don't remember the exact dialogue, I imagine we said things like 'people don't know what to say so they say nothing', 'they feel too embarrassed to broach the topic', 'people are worried about saying "the wrong thing"' and 'they don't want to be disrespectful and intrude'.
This seminar hit close to the bone. I imagined all of these were the reasons why people had tiptoed around me or, more precisely, around the aspect of my identity that burned bright in my core: my mental health problems. Whilst they weren't 'all of me', they certainly shaped my life. I certainly knew that they were why my friendships had either crystallised into things of absolute beauty or just cracked; after all, I could only bear to be around people who didn't deliberately keep me at arm's length. 'Serious illness often changes the way others see us. Few, if any, relationships remain the same', writes Professor Vickers in the synopsis of his forthcoming book, Being Ill: On Sickness, Care and Abandonment, '[...] This book focuses on our sense of self when ill and how infirmity plays out in our relationships with others' (Reaktion, summer 2024). As a person with one of the most stigmatised (and contested!) mental health diagnoses, I have a few stories of how my difficulties have influenced my relationships. And I hazard a guess that lots of my blog readers do too.
This summer, I had more time to think (and write) than I've had in three years (pregnancy and baby have been keeping me very busy). I love being with my daughter, but seriously, what bliss! The luxury of some childcare when I wasn't at work, gifted me the opportunity to reflect on how I want to spend my limited, and—this a morbid thing to write— finite time. Ultimately, there's nothing like caring for something as all-day-and-all-night all-consuming as a baby to make you re-evaluate your relationship with time. Having a half an hour reprieve a week from a newborn, rising to say one hour a week for an older baby (when I felt able to leave her without milk; I was breastfeeding and try as I might she didn't drink from any bottles) and nowadays upped to maybe two or three hours a week of toddler-free time (if I'm lucky) to write or work on something. The limited time really puts the wind in my sails, let me tell you! Not only that, but seeing a human grow before your very eyes— first they fit in the crook of your arm, then blink and they are so heavy you can barely lift them— makes the passing of time quasi-visceral. I feel urgent; I realise there's no time like the present to write things. I want to rip the wrapping right off.
Surely though, this constricting of my time means one thing if I am going to continue to write and talk about the things that mean something to me: constraint. I am hoping this will be the productive kind— as in, constraint engenders creativity (I guess there's only one way to find out, right?!). As I approach another birthday in my thirties under this new-found constraint, I can't help but notice that I have always enjoyed the opposite of 'pulling away, retreating' from things that, like illness, people don't always quite know how to talk about.
This summer I decided to acknowledge that, for as long as I can remember, I've gravitated towards topics, themes and even people, that make some people pull away, retreat. I'm just the same as everyone else. I don't know how to talk about these things, but the difference is that I'm generally willing to give it a try. I love words and their possibilities— most of all, their emotional possibilities. Sometimes this is scary; sometimes my willingness is naivety or foolishness. Sometimes I am wildly off the mark like an amateur at archery. It's got me into trouble a few times. Sometimes though, it lands.
My CV can be read through this lens of willing to give it a try. When I was at university I did a summer internship in a HIV and sexual health charity. As a team, one of the things we did was deliver sessions on sexual health and contraception in centres for people with learning disabilities, as well as young people (many of whom would be described as neurodivergent today) with difficulties going on in their lives. I could see how important it was that they had the opportunity to ask questions to people who weren't there to judge. A little before that, I was the go-to person in my village for my childcare skills for children who also nowadays would be called neurodivergent. Whenever anyone spoke negatively of these children, I was there poised (politely, of course) to challenge that. I was also briefly a volunteer at a swimming school for disabled adults— as a child I had seen how disabled people were discussed, in hushed and sombre tones.
Hushed tones have never sat right with me (and nor have sombre). Maybe that's why I got the nickname 'One Step'— short for 'One Step Too Far' because I often spoke about things that others didn't. I didn't take this nickname as a compliment at the time, but after university, I channeled this spark for less talked about topics by volunteering for ChildLine (one of the best things I've ever done in my life). It was fulfilling to give space to others to speak their minds, those who often didn't know where else to turn. I was praised by supervisors on my weekly shift and they asked me to mentor trainee volunteers. The irony was not lost on me; I had some kind of a flair for listening to young people who needed to talk, when the same could have been said (still could be said?) of me. It takes one to know one. I did tell the supervisors I had experience of mental health problems, but I didn't tell them about my BPD. The last thing I wanted was the label, with all its baggage attached, to go before me.
Not long after my weekly evening shift at ChildLine came to an end, I took a year out of teaching (exhausted and disillusioned) and worked a nine-til-five job in the support services of a charity. The charity was established to support and promote to the rights of people with 'visible differences' (a term that it still not widely used). I immersed myself in a world of people affected by birthmarks, scars, skin conditions like vitiligo, differences in their limbs, the size or shape of their faces and so on, and what used to be commonly referred to as disfigurements. Perhaps it's more accurate to say that I immersed myself in a world of people struggling not as much with their visible differences as with incessant negative stereotyping, hurtful comments, staring and discrimination thrown onto them by the world. Once more I found myself listening to people's stories that I felt needed to be heard on a societal, as well as personal, level.
Whilst I absolutely hated the office environment, perhaps all roads were leading me to Rome? I decided that I wasn't done with teaching and teaching certainly wasn't done with me. I re-invented the 'primary school teacher me' as a '"special educational needs" teacher me'. All I had to do was to be the former, just with a lot more glitter and a heck of a lot more grit. Alongside singing and sensory play, my bread and butter became talking with families about things they aren't always able to talk about in any given context. Day to day I discuss and reflect with adults as much as I work directly with children. I've never had training on how to hold meetings or have conversations that might be classed as awkward or difficult, but the university of life (or maybe just being me) was working pretty fine. And still is, I think.
Some threads that run through your life are woven so deftly you don't even notice them being spun. My awareness of this thread has, until recently, been a tenuous half-awareness, albeit one hard-won from prising open difficult truths clamped like pearls in wary shells. This summer though, I dared to acknowledge just how much this thread energises and enriches my life. Under the auspices of my new-found constraint as a mum, I want to follow this single, shiny thread and see where it just might lead me.
When I was at school there was an affable, gentle RE teacher who told a story from the Bible I've long since forgotten, but the kernel was: if you are good at something, it is a waste not to follow your strength. I am flawed in both how I listen and what I say. Yet, I try to remain open to the possibilities of language and be willing to see what words— both others' and my own— might be able to do in the world. If you have an interest that exerts a pull so strong, then I think this in and of itself is worth following too.
How about you? This feels embarrassing for me to write (no surprise there then, as the emotion of embarrassment is never far from me!). I am thankful to a friend for talking about writing with me recently as this conversation got me thinking more about some of the themes in this post. I hope this was helpful for some of you to read. As always I would love to hear from my blog readers!
Rosie x
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