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 'nobody likes to feel they are intruding'.
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 these difficulties weren't 'all of me', they certainly shaped my life. I certainly knew that they were why my friendships over the years prior had either crystallised into things of absolute beauty or just cracked; after all, I could only bear to be around people that didn't request censorship or a heavily-edited version of me.
'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 an anecdote or two about how my difficulties have influenced my relationships. And I hazard a guess that lots of my blog readers do too. For me, it's been mostly for the better, but at times there have been some really tough moments too.
This summer, I had more time to think, and write, than I've had in three years. Growing, birthing and then and caring for a baby kept me...busy. I love being with my daughter, but seriously, the luxury of some childcare when I wasn't at work. Bliss! This gifted me the opportunity to reflect on how I want to spend my limited and—what a morbid thing to write— finite time.
Having a child blasted apart everything I had ever known about time. 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 the clock. My time away from my daughter started as about a half an hour each week, rising to say one hour a week when she got a bit older. All of this is for complicated and personal reasons (breastfeeding, not actually wanting to leave her). Nowadays things are different and I have a couple of hours each weekend, and maybe a little time in the evenings if I am lucky, to work on some of my writing or projects. This limited time really puts the wind in my sails, let me tell you!
It's not only the limited time that I have to write that makes me want to do it fast. 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 lifting them hurts— makes the passing of time quasi-visceral. I feel urgent and 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 ready to challenge that. I was also briefly a volunteer at a swimming school for disabled adults— I wanted to get to know these people on their terms, rather those hushed and sombre tones others often used to describe them.
Not too long after that I gained the nickname 'One Step'— short for 'One Step Too Far'. It had become clear to my friends that I often said things that others didn't. Sometimes friends would act shocked that I had voiced something, even though I felt sure they had felt or done some of these things too. Whilst I laughed (we all did), I didn't take this nickname as a compliment at the time. It made me sad that there were so many elephants in the room all the time. I felt like an elephant myself sometimes.
When I graduated and moved to a new city, I channeled my spark for talking about things some people found difficult to speak about by volunteering for ChildLine. One of the best things I've ever done in my life, it was fulfilling giving space to young people to speak their minds those— who often didn't know where else to turn.
Lots of volunteers felt nervous to pick up the phone, but I rarely felt anxious. I was praised by supervisors during my weekly shifts and soon 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 that 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 precede me.
Not long after my weekly evening shift at ChildLine came to an end, I took a year out of teaching. Exhausted and disillusioned by education, I worked a nine-til-five office job in the support services of a charity. The charity was established to provide emotional support and promote the equality 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. I felt good when someone felt able to open, words coming out of their mouths like birds coming out of cages. I had my own birds in my own cage. I could relate to that claustrophobia.
I quit that job after a year because being at a desk all day was destroying me. Whilst I hated the office environment, perhaps the themes were converging and all roads were leading me to Rome? Sitting in the office, I decided that I wasn't done with teaching and teaching certainly wasn't done with me. Everyone I had worked with had told me I was good at my job and not to leave! After a little research and a pep talk with myself, I re-invented the 'primary school teacher me' as a '"special educational needs" teacher me'. Surely all I had to do was to be the former, but with a lot more glitter and a heck of a lot more grit?
Alongside the singing and sensory play, my bread and butter was of a familiar flavour. I talked, and still talk, with families about things they aren't always able to talk about in any given context. Their struggles, their worries. Most days, 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 some might describe as awkward or difficult, but the university of life (or maybe just being me) has been working pretty well so far.
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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