Editor’s note: Identifying information has been excluded from this article in order to maintain the anonymity of the author, as well as other friends and family of R. The reader should be aware that this article contains content about mental health issues like depression, suicide, and eating disorder.
On the afternoon of Monday 29th September 2014, I received the news that my friend R had taken her own life two days earlier. It was, and thankfully still is, the worst phone call I have ever received. R and I had first met at university four years before, and not only was she one of my closest friends, but also by far the biggest single cause of my becoming an intersectional feminist. Her influence on my writing and day-to-day life is impossible to quantify. I will always be immeasurably grateful for everything we shared in the tragically short time we had in each other’s company. This is my attempt to summarise the story of how our lives crossed, and how she made me a better person.
The first time R and I met, we had a rather stilted ten minute conversation with three other people where nobody had a clue what to say. For some reason that is still a mystery to me, I found myself recounting, in a misguided attempt to relieve the awkwardness, the story of falling over and breaking my leg at age six while playing tennis. To my surprise, for once this story actually got a response.
“Well, flying is just the art of throwing yourself at the ground and missing. Getting halfway there has got to be worth something.”
I replied, “I guess. But clearly it’s the second part, the missing, that presents the difficulties”
This exchange is paraphrased from Douglas Adams’ The Hitchhiker’s Guide to the Galaxy, one of my favourite books (the first part of a ‘trilogy’ of five – don’t ask). The series remained an inexhaustible source of humour for R and me for all of the time we knew each other. The ensuing four hours were certainly no exception. I probably scared off many potential friends by fan-boying relentlessly over Douglas Adams that evening. But it was worth it, because so did R.
I also learned something else important about R that night which was, for better and worse, a defining feature of the next four years of both our lives. As she put it, R was “very familiar with the art of falling over”. She had been diagnosed at the age of twelve with myalgic encephalomyelitis, or ME — a chronic and still largely untreatable illness. Symptoms include severe exhaustion after even mild physical or mental exertion, chronic muscle and joint pain, headaches, issues in maintaining a consistent body temperature and bouts of disequilibrium or, as I think R preferred, clumsiness.
Sadly, what also proved to be a recurring theme in R’s life was her struggle with mental illness. I think it’s safe to say that her experience of severe depression, anxiety and, in later years anorexia nervosa, helped to shape her in many and varied ways. Some outcomes, like her astounding empathy and ability and desire to support others, exemplify why I love her as I do. Others offered nothing but immense stress and pain.
The moment R began at University, she also found the freedom necessary to express her sexual orientation, which she had been unable to do before. She joined the university LGBTQ association (and, in later years, the Women’s Association and Disability and Mental Health Student’s Association), and quickly threw herself into organising for protests and other events aimed at raising awareness of LGBTQ issues both on and off campus. Her ability to articulate a point and wield her sense of humour as a weapon against anyone who dared to oppose social progression soon became legendary. Here she is lampooning foolish myths about bisexuals:
“Bisexuals are confused, promiscuous, cheating, experimenting and lying. This is all very impressive given that they don’t actually exist.”
Perhaps more importantly, many of us still remember fondly the more everyday work she did for the societies, including making new members feel immediately welcome, and providing support, comfort, and advice to anybody who needed it. She had an instinct for those in need of someone to reach out to them. I think her experience as a bisexual, disabled, neuro-atypical woman (or, as she often referred to herself, a queer, crippled, loony bitch) was instrumental in her ability to help people to the extent that she did. She came to exemplify the idea of an ‘everyday’ activist – somebody who realises that offering kindness, love, and support to those around them affected by any kind of social wrong is as important to social justice as involving yourself in direct action. I am forever grateful for her instilling that philosophy in me, as well as practicing it when I needed a shoulder to cry on.
R had soon confided much in me about the perilous state of her physical and mental health, as well as the often useless and sometimes downright harmful advice and opinions she had received from doctors, family, and friends. As she put it on her blog;
“Many of them assumed I was imagining the monsters, or at least exaggerating how many there were. Some even suggested that I was making them up altogether. Nobody was willing to look under my bed… I was judged for seeking out monster experts. I was suspected of actually befriending monsters… Because nobody else had seen the monsters my anger was seen as irrational. My reaction was seen as the problem, and the monsters as secondary.”
Due to both monsters and ill-informed monster experts, R’s time studying was fraught. She temporarily dropped out of University several times. She became all too aware of how difficult living an independent life with severe disability could be, and had more than her share of additional stress dumped on her by a cruel and vindictive system of what laughably passes for ‘social security.’ The urgency of the need for radical change in the welfare system first became apparent to me through R’s eyes. It became all too clear that, as important as a strong and loving support network is, it could never make up for the material deprivation imposed by an oppressive system of uncaring right-wing ideology and Kafkaesque bureaucracy.
Nevertheless, a mixture of honesty, bluntness and kindness set R’s sense of humour apart, and it survived the worst that the world and her own brain and body could throw at her. She would regularly point out that there was a painful irony in having clinical depression alongside the middle name ‘Joy.’ As she also remarked, it is only a matter of time before you cave to the pressure that kind of lived irony brings.
In the summer of 2012, R developed anorexia nervosa and began eating far less than she needed. The decline was gradual but brutal. She hated her body and was desperate to change it. Unsurprisingly, her depression deepened as well, and her physical health took a nosedive. At R’s best, a day out was physically taxing. Now, getting out of bed was not only generally impossible but sometimes actually dangerous. By the peak of the crisis, the multiple blankets and hot water bottles on her bed were the only things warding off hypothermia, as multiple bodily systems slowly shut down. She was dying, and I woke up every morning with little to do but keep watching, as emergency nutrition in a hospital would only provoke a worsening of the crisis in the days that followed. How much are you allowed to manhandle an incredibly sick friend for their own good? I still don’t know the answer to that question. I manipulated her. I sometimes moved her a little, without her consent, to prevent dangerous medical conditions arising from immobility. Occasionally she fought back, though she was always too weak to do any damage. When I judged it necessary to avoid complete starvation, I sat with her and effectively forced her to eat, despite the obvious psychological distress it was causing her. I sat with her for hours afterwards, often receiving the sharp end of her silent resentment, to ensure she didn’t throw up. I am not proud of it, but I would be lying if I said I would not do it again.
Eventually she was referred to a specialist eating disorders ward, which was thankfully only a few minutes’ walk away from our house. Just the referral gave her a little extra strength, and she managed to improve herself such that there was at least no immediate threat to her life. But actual admission was still a couple of weeks away. R’s parents had brought a wheelchair so that, with the help of others, R could have a little independence – despite being too weak to walk, she could still get outside and visit her beloved ducks at the local pond. One barrier stood in the way of this however – actually managing to build the damn thing. It wasn’t an enormous engineering project. It required two things that between us R and I had – commonsense, and upper body strength. But we still had to coordinate.
The first time we wanted to use it, I remember standing in the middle of the hallway by the front door trying to unfold the main section. It was much more complex than it looked (read, I am incompetent), with all manner of locks and safety devices to be released. R was lying on the stairs, trying to shout descriptions of what I was doing wrong, and how to solve the problem.
“No don’t pull that bit, you’ll break it! A little to the right. NO! YOUR RIGHT, YOU PLUM. Ooh, how did you manage to do that? It’s never done that before.”
The urge to break decorum and scream “Well if you’re so clever why don’t you do it then?!” was sometimes very strong, but I always resisted. It would only have elicited a response along the lines of “Because I’m the cripple here, you bottom quark”.
About twenty minutes later, when I was reasonably confident we had a functioning wheelchair, I went and sat down next to R to get my breath back. Instead, we both laughed until we could hardly breathe. It really struck me how the absurdity of life can survive even the worst crises. Here I was after all, with one of my best friends in the entire world, who was suffering from an immensely serious illness. Even now, her life was very much at risk in the long-term, and we both knew it. Yet, just for a moment, this could be made the background context to a simple burst of slapstick.
The last time I saw R, we had lunch at a pub. I was excited about starting my Masters course in a new city. We talked about how far we’d both come since the first time we met, and about Douglas Adams (we hadn’t really come all that far). We spoke about a band she had introduced me to and about Feminist activism. We discussed how she was struggling with a dip in her mental health, and how she was considering getting home support from the local community care service. We made plans for her to visit after I’d settled in. We laughed uproariously, as we always did. We hugged. I left.
A week or so later, I moved. R and I exchanged a few texts. I knew she had gone into hospital again, and lamented not being there to support her. I resolved to visit her, soon. And then…Well, you already know. It felt something like this.
“For a moment, nothing happened. Then, after a second or so, nothing continued to happen” – Douglas Adams
Everybody’s friendships are different. I can’t really sum up mine and R’s for you, but this short anecdote might go some way. Once, as I was walking with R to the hospital, we discussed how ridiculous it was that people still believe in this day and age that men and women cannot be friends because one of them will ‘always want more’. We laughed about applying this to our case. I pointed out that we saw each other wrapped in towels coming out of the shower innumerable times in our years living together and that, surely, if this ‘common sense’ had been true, given how sexy we both were, we should have been unable to resist leaping upon each other in a blur of animalistic lust. R explained perfectly why this never happened; even if we had had sex with each other, there would nevertheless have been not an ounce of sexual tension between us. Our relationship was so platonic it hurt. And it hurts now more than ever. I hope some of you here will relate to R’s and my story in your own way. Just one of you would be enough for me, because in one human’s story lies infinite complexity – a marvellous fact that appeared much less marvellous when I reflected on the 2000-odd words I had to tell this one.
Stigma still surrounds mental illness, and other invisible forms of disability. R was passionate about fighting this (in her last year, she became an advocate for a national mental health charity on precisely this topic), and despite big steps in the right direction in recent years we still don’t talk about it enough. We especially don’t talk about the importance of friendship and support in managing or even overcoming serious illness. People don’t know how to react when you tell them you’re depressed, or experience serious anxiety, or have an eating disorder, or suffer psychosis. Partly, I think this is because we as a society understand that mental illness is horrible, but not how it interacts with the bits of life that aren’t. And the truth is, it just does. It becomes part of life’s tapestry. This rarely makes it any better. I for one sometimes feel like the person creating my tapestry has dropped one too many stitches. But I think it’s the reason you find unexpected fragments of humour and decency at even the worst extremes. And, thanks to R, I’m never going to stop looking for them.