A Portrait of the Artist as a Chronically Ill Young(ish) Woman
Looking at Disabled Role Models
“It is no measure of health to be well adjusted to a sick society.”
J. Krishnamurti
I have always wanted an excuse to reclaim the title of James Joyce’s novel, A Portrait of the Artist As A Young Man. The book, about an introspective, thrill-seeking, bookish, young artist, felt like it wasn’t for me, but at the time, I wanted it to be.
The title presents two labels that I haven’t always felt entitled to. Firstly, being an artist, and secondly, being chronically ill. It might also sound strange – how could you possibly struggle with these self-identifications? If you make art, you’re an artist. If you are chronically ill, well, then you’re chronically ill.
The two terms are strangely loaded. There are gatekeepers, but what I’ve found over time is that the worst gatekeepers exist in your mind.
Being An Artist
I accepted I was an artist, when I had been making *quite weird*, though dare I say it, thought-provoking performance art, or “moving art installations” for many years in galleries or theatre festivals, and then I got to the point I would only accept work that was paid (badly).
The term ‘artist’ has felt ‘loose-fitting’ after I left my precarious arts career in London a couple of years ago, to move to Jerez de la Frontera, a small city in the very South of Spain. I was teaching English as a foreign language, also making short films about the interesting artists I met here, when I was hit with a flare-up of my disease and we entered the pandemic.
Hereditary Spherocytosis (HS) causes debilitating and chronic anaemia. I had it worse than ever, and my creative outlet, my literal lifeblood was taken away from me as I was forced to think primarily of paying the bills. I had jokily told everyone when I left London that I was “retiring”. I didn’t know how prophetic that statement would turn out to be.
After a life-changing surgery, along with the support of my wonderful partner, I was able to return to my first love: writing. Writing has been the old faithful that got me through many a rough patch, including illness.
I Am A Chronically Ill Person
This is a new mantle I have taken on. Strange I know. I have been ill on-and-off throughout my life. Yet I had the privilege of youth to carry me through. It was in my late 20’s that the hospitalisations and never-ending visits to the doctor began.
I didn’t talk about it. I could disappear in my bad moments and re-appear to invent myself when I was better. I moved through jobs and friends. I noted that people in my network took my absence as a lack of commitment to the cause, whatever it was, friendship or art. So, I learned how to move on, keep going. I am good at that. But I’m done with it now.
During my last bout of illness, months stretched to years, and this was the catalyst to accepting that I was chronically ill. I didn’t want pity – in fact, I want nothing more than to expel the negativity of others, and the fact I’m treated differently when I’m unwell. The binary distinction of “unwell Rebecca” and “healthy Rebecca” is damaging. During unwell periods, I was always good and always me, even if I need more support than usual.
I stand up to be counted as a chronically ill person with invisible disabilities. It has informed the way I create and see the world. I’ve had unpleasant experiences because of it, but it doesn’t take away the sum of what I am. I have decided not to look for ways to cope with, what the chronically ill philosopher and thinker Krishnamurthi called, “a sick society”. The other sickness I deal with is a society that values productivity over health. Accepting that will not cure me.
I choose to find my own ways of coping. I will live as I am whatever the consequences. I write about accepting illness as it is, instead of ways to ‘cope’.
In this process of discovery, I look for people like me, creative people working online; discovering or re-discovering characters in novels, films, or the public eye. In a world that turns away when I’m unwell, I want to see something, or someone, that looks back and holds my gaze.
Misfits in Novels
“...today’s mistake is going to cure me of being too romantic. I have come to the conclusion that it is no use trying to be romantic in Avonlea. It was probably easy enough in towered Camelot hundreds of years ago, but romance is not appreciated now.”
[…]
“Don’t give up all your romance, Anne,” [Matthew] whispered shyly, “a little of it is a good thing—not too much, of course—but keep a little of it, Anne, keep a little of it.”
Anne of Green Gables
One of these characters is Anne of Green Gables – a supposedly ugly, scrawny little orphan with a vivid imagination and propensity for grandiose verbiage, appearing one day in a rural Canadian town and turning the life of unmarried siblings, Marilla and Matthew, upside down. Anne is not written as a chronically ill character, but she is traumatised by her early childhood at the orphanage, and therefore ostracised by the townspeople (until she wins their hearts!).
Due to her past, she is no stranger to isolation and consequently develops an inventive inner life, which helps her cope with demanding situations. I have never resonated with a character so strongly, except perhaps Jane Eyre in her childhood phase. The beginning scene made a great impression on me. When Jane Eyre is locked into the red room after a temper tantrum (a reaction to being mercilessly bullied by her cousin) and believing the room to be haunted, she falls into a fit of “hysteria” that leaves her bedridden.
‘Hysteria’ was an idea prevalent in Western society for around 2,500 years – it was a term often ascribed to women suffering from physiological and mental illness. The term challenged the idea that there would be any real or physiological cause for the distress, which simultaneously undervalued the pain or incapacity of the patient. It was all in the mind.
This was explored in the wonderful and critically acclaimed documentary, Unrest, directed and filmed by Jennifer Brea, a woman whose life changed dramatically after she became bedridden with Chronic Fatigue Syndrome (CFS), previously known as ME.
In the Victorian era Sigmund Freud developed the theory that people who had suffered great trauma internalised it, so that it later manifested itself as physical symptoms such as fits, fevers and fatigue, a.k.a. hysteria. This meant men could be diagnosed too, but it was more commonly diagnosed in women.
Brea believes these ideas have persisted in medical attitudes to illnesses prevalent in women, despite development in neurological sciences, which have improved understanding of the causes of CFS.
I do not have CFS, but I’ve had periods where I’ve been bedridden. When I am fatigued, my cognitive abilities are impaired, I go from being an overly verbose person to barely able to communicate. It affects my moods and sensitivity. My disease has also led to other medical problems that aren’t knowingly connected to HS.
Last year, when I joined a Facebook group of HS sufferers, I realised that a lot of my seemingly unrelated symptoms were experienced by others too. Yet I had internalised a lifetime’s worth of accusations of hysteria and hypochondria.
I am now in the long overdue process of recognising when low moods and confusion are connected to my physical state, rather than being the result of a personality deficiency, as I’d previously believed. Because of this assumed ‘deficiency,’ I spent years dimming the light of my personality. The courage of people like Jennifer Brea have been revolutionary in helping me understand that my issues don’t define me, and I am gradually turning the light up again.
The Beauty of Illness in Popular Culture
“I don't do anything in order to cause trouble. It just so happens that what I do naturally causes trouble. I'm proud to be a troublemaker.” Sinead O’Connor
When I talk about representation of illness being beautiful, I am not elevating suffering to a higher realm. Illness itself isn’t pretty. Yet I want to contradict the unimaginative pessimism so many ascribe to it. When I talk about my illness, I’m being open, practical; I’m choosing to trust you. I inwardly roll my eyes at down-turned lips and faux sympathy.
I understand that it’s because public understanding of illness has been fossilised by media representation. It’s sad, tragic and even glamourised.
One public figure who has openly talked about chronic illness is Sinead O’Connor, who revealed in 2007 that she had been diagnosed with bipolar disorder, though in a recent interview, revised it, attributing her flare-ups mostly to PTSD as a survivor of abuse. A wise, intuitive, mind-blowingly spiritual singer and musician whom I deeply admire, I believe she should be recognised primarily for her music talent, but the media circus is often more interested in tearing her down.
She was known as “a trouble-maker" after she destroyed a picture of the Pope during a performance on Saturday Night Live. As Ireland’s sweetheart, a young doe-eyed woman with the voice of an angel, it caused shockwaves in the conservative Catholic stronghold of her mother country. In fact, Sinead's criticism of the church diminished her career. I also wonder if her unflinching honesty about her illness contributed to her image as a ‘trouble-maker’.
I recognised a similar ‘punk af’ spirit when watching the documentary, Crip Camp. Starting off in Jened, a hippy camp for disabled youth in the year 1971, the documentary busts myths and uncharitable preconceptions about disabled people from the off. We see disabled teens talking about being dismissed, ignored, denied privacy or ability to develop their own personal, individual or sexual expression. This is cut through with grainy footage of the same teens boogying, smoking pot and kissing as any teen in America would have been doing at the time.
In fact, Jened paved the way for a disability civil-rights movement in the US, partially led by disabled activist trailblazer, Judy Heuman, the Angela Davis of the disability movement. We follow them from large demonstrations to occupations in congress offices, whilst the Black Panthers send solidarity missions in support of their cause.
I can’t describe the joy the film instilled me with, and after some recent despondence, ignited a passion to dust off my old social justice activist hat.
Openness is Punk AF
I feel gleeful when I see disability embodied with passion and vulnerability, whilst shouting for the right to be heard. As a result of her honesty, Sinead O’Connor has had to deal with incredible amounts of public abuse, and her fantastic contribution to music has often been overshadowed by her public battles with illness.
In a recent discussion on the Blindboy Boatclub podcast, the interviewer, known as Blindboy, refreshingly chose to ask questions only about her music and creative process, leaving it open to her to mention her struggles, and therefore frame her own narrative.
Historically, Sinead has refused to be apologetic about her openness: she has put “cries for help” out on social media and says she has done this to destigmatise mental illness and suicidal ideation. In the interview with Blindboy, she simply says that when she is ill, she is unable to work, and that usually her creative process is slow and intuitive. She says there is a propensity for depressive states to be conflated with creativity, but that’s another glamourisation of illness.
Recently, professional tennis player Naomi Osaki has been criticised, but more overwhelmingly lauded, for her decision to withdraw from media interviews at the French Open due to her mental health. It resulted in her being fined and threatened with suspension. My chest tightens in sympathy, and I bow down to her courage. I imagine that as a woman of Japanese-Haitian origin, there is only more pressure and less space to be open and vulnerable.
Another hero of mine is Nina Simone, an otherworldly talent diagnosed with bipolar disorder late in life. Nina was always uncompromisingly Nina, but she bore the burden of the world’s view of her, and her career nosedived after she expressed radical views on Black Power.
I wonder if she’d been alive now, whether the world would be a kinder, more nurturing place. Like Sinead, I don’t believe her pain improved her music; her life experience, yes, and her unique insight. Love, support, and validation never diminished anyone’s ability to glitter, IMHO.
Illness isn’t a downward spiral. It’s something to manage. It’s not beauty or joy or ‘punk af’ within itself, but those things can go hand in hand in the life of somebody with chronic illness if society lets it.
This month I will provide you with a sensory watching/ reading/ listening list based on what I wrote about:
Read:
A Portrait of the Artist as a Young Man, James JoyceBonus recommendation:
The Country Girls Trilogy, by Edna O’Brien (O’Brien’s own delicious modernised version of James Joyce's novel)Anne of Green Gables, by L. M. MontgomeryJane Eyre, by Charlotte BronteYou can get these below on a list I’ve made on an affordable online UK bookshop, sourcing books from independent booksellers. They are also affiliate links, which means if you buy a book I will get 5p or something.https://uk.bookshop.org/lists/list-of-books-the-portrait-of-the-artist-as-a-chronically-ill-young-ish-woman
Listen:
The Blindboy Boatclub podcast with Sinead O’Connor.
Skip to half an hour in if you only want to hear Sinead O’Connor!
Watch:
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