The preventable death of Maeve Boothby O’Neill
A lament for Maeve from a friend who loved her
Today’s post is from Bethan Knight. Bethan lost her best friend Maeve Boothby-O’Neill to ME in 2021, a death that shouldn’t have happened. Maeve was an exemplary human being who changed Bethan’s life. Bethan is a writer and essayist, aiming to be a better disability ally, and honouring Maeve’s memory in grief.
Warning: this post contains upsetting content, including the death of someone with Very Severe ME. It’s OK to sit this one out if it feels too close to home.
If you have never had to see the death of a person you love dissected and described all over the news, then I’m not really sure I can describe it to you, but know that this involves snarky internet commentary about the most traumatic events of your life.
As the inquest has progressed, we have heard more reporting into the horrors of Maeve’s death and how ME affected her. How she faced ignorance and ableism and was failed by people who were supposed to help her. She has become famous for something she never wanted; for dying. But I want to talk to you about Maeve as I knew her.
The beginning of a beautiful friendship: how we met
I first met Maeve in an A-level Classics class, and I was awed by her wit. She always did the reading (and then some). She had an unquenchable thirst for knowledge, that was clear from day one. She also had the most spectacular curls I had ever seen (better even than Julia Roberts in Pretty Woman). We were friendly, but not close, and so when Maeve moved away to Bristol it was a shame but I didn’t think much else of it. A few years later we reconnected through Facebook over a love of Wes Anderson and similar (but not identical) political views. She told me that she hadn’t been able to go to university because of ME, and like a lot of able-bodied people I didn’t quite grasp the seriousness of the illness. As I write this I almost committed the faux-pas of calling her patient, but as she once told me: ‘Patience implies I have a choice. And as you know, I’m bloody short tempered.’
As the years progressed and her condition worsened, ME meant that in person interaction would wipe Maeve out for weeks. We weren’t able to do any of the activities we’d have loved to do, such as go out for dinner, or go to the cinema and argue about the film afterwards. I couldn’t pop over for a coffee and we couldn’t stay up listening to Amy Winehouse until 3am. Maeve couldn’t have visitors: it would cost too much physically, and she needed to preserve her energy for everything you and I might take for granted (reading, brushing her teeth, washing her hair, going to the hairdressers. Her beautiful curls had to get the chop).
Despite this, our friendship blossomed. Maeve was an avid reader, she shared with me her love of E.M. Forster and George Eliot, and I read Middlemarch on her recommendation. When reading began to hurt her eyes too much she turned to audiobooks (courtesy of our local library), and she was always the go-to for audiobook or podcast recommendations. It would blow her mind to know that Alastair Campbell and Rory Stewart - two men from across the political divide - have a podcast together.
Maybe I’m Amazed: What it was like to be Maeve’s friend
When she had the ability she believed in hand-making her cards. She is also the only person I know of who still sent thank you cards into adulthood: impeccable manners. She once knitted me a pair of socks and I’ll treasure them always.
She challenged me when I needed it, she could always get me to see another outcome or a different point of view. One of the qualities I most admire in her is that she was securely intelligent and so she never made me feel stupid. Rather, her thirst for knowledge was infectious. In the last few years of her life she was teaching herself Irish; her Irishness was important to her and it is a theme in her novel. She even influenced me to pick it up on duolingo, although these days my Irish can just about stretch to dia duit.
She was a gifted writer and encouraged the same creativity in her friends. She had all these magnetic ideas and was generous enough to pull other people into their orbit: when she was at school she would write songs and friends who had never before sung in front of a public audience joined her on stage. During the pandemic we were amused by interviewees flaunting their intellectual prowess over Zoom, so we started Shelf Absorption, a website where we interviewed people about their bookcases. Maeve would always hit me with: ‘Shouldn’t you be writing?’ (the answer is yes, but that I am not). She was the most meticulous researcher, and her common complaint with modern books she read was how poorly fact-checked they were. Whilst this is true, I can’t think of many writers who would send me on an expedition to the National Archives to look at a foreign office memo from 1922. Knowing her was one of my greatest adventures.
Due to Maeve’s pacing and determination she was able to write most of her first book, The Alchemists, before she died. It took all of her remaining energy and she dedicated 20 minutes, on a good day, to her craft. Although it is unfinished, and she never had the opportunity to read it back to herself, I think her novel is amazing. The world deserves to read it - and so they will when we get it published.
Maeve left me with so many gifts. One of the most important is the friendships that I made through her. The community that I have inherited from her helped me to endure the horror that has been reading about the inquest. Maeve’s childhood friend Una told me that ‘at some point we have to figure out how to let it end for us so we can have our relationships with her back’. I think that writing this is the start.
I was able to see Maeve before she died. She could barely speak, and I had to whisper because she was too sensitive for loud noises. She told me that all she wanted right then was to be able to drink sparkling water (she was so dehydrated). I wasn’t able to hold her hand or to give her a hug, and I had to wear a mask. We told each other that we loved each other and that we were glad we had been friends. Maeve said that she had wished we’d been closer when she had been less sick. I often feel bitter about what ME has stolen from Maeve and the people who loved her. It took everything. Whenever I am in danger of being consumed by bitterness I remember that one of the last things that Maeve said to me was that she wanted me to have choices in life. That’s who she was: even at the end, she was thinking about people other than herself.
Living in a world without her: Maeve’s legacy
Maeve is not just a statistic or a news story. She was a person. She was exceptional, but disabled people do not need to be exceptional in order to deserve to live. Maeve wrote that she had the potential to be an asset to humanity, and I’d like to reassure her it wasn't an unrealised potential. She would have contributed more to the world if she had been allowed to live longer, but even in her death she left us with so much. She touched the lives of everyone who knew her, and she changed mine for the better. So, if anything can come from her death it is this: do not let disabled people be forgotten.
Waiting for the miracle: hope for change
Maeve and I would often talk about the future, and almost all of our imagined futures included a cure for ME. We would be living together in New York or somewhere peaceful like Connemara. She was going to teach me to write in cursive and I would bore her senseless about pop culture. We spoke about the future all the time, because one of the things we had in common was a love for life and all the absurdities that come with it. We spoke about living together and meant it, because neither of us thought she was going to die so soon. All of the scenarios we prepared for were ones where Maeve was alive; she wanted so badly to live and to live well. The only one we didn’t discuss was the one I am living in, where I am supposed to go on without her. To do so is made possible by two things. One is that love never dies, even when a person does. Hope is another. Maeve spoke of a cure and of research funding to help the millions missing to ME. One of her last bits of writing opened with Leonard Cohen’s Waiting for the Miracle:
‘And me, I'm up there waiting/
For the miracle, for the miracle to come.’
At the time of writing, 700,000 people in the UK are living with ME. How can we help them? We will find a cure. But we also need to listen to people with ME and advocate on their behalf. Listen to them. Believe them. There needs to be more research and it needs to be fully funded. Doctors, nurses and social workers need to be better informed about how ME affects a person, and family carers need more respect for the extent of the efforts they go to.
To the millions missing: Maeve didn’t forget about you, and neither will I.
Thank you for sharing that very moving personal memory of your friend Maeve. I couldn't agree more with your comment about how disabled people should not be forgotten. We are often invisible in the ableist society we live in. Sadly, Maeves death is yet another tragic reminder of how disabled people face systemic violations of their human rights such as the right to quality health care.
Maeves preventable death renews my determination to fight for a health service which provides high quality health care for people with ME. I would encourage everyone who has the health to do so to contact their local MPs and the Health Secretary about the coroners prevention of death notice. We need to put pressure on the powers that be to take the lives of people with ME seriously.
It's lovely to hear about Maeve, and to be reminded that she was a real person not a case in the newspaper. Thank you for sharing this I hope it helps you and all those who loved her.