THE UNENDURABLE

In her beautiful memoir, The Shapeless Unease, Samantha Harvey talks about having to endure her life when it’s unendurable. She writes specifically about insomnia, but much of what she says feels so close to my own journey. This phrase, enduring the unendurable, has come to me many times in the last year. I’ve had chronic illness for a quarter of a century [Edit: I originally wrote quarter of a decade… brain fog!], and often my symptoms and the fall-out from the disease have felt intolerable, but then things changed in March of 2021. Since then I have been enduring the unendurable.

It actually started before March, perhaps late 2020. I developed a condition with an almost laughable name: Burning Mouth Syndrome. I thought it was a version of dry mouth, one of my many symptoms, but then it got worse, and worse, an ongoing sensation that I’d gulped down a hot cup of tea, that my tongue was scalded. Sometimes the tip was red and sore to the point of affecting my sleep. I’d weep with the awfulness of it. There’s something about pain and discomfort in the head/face that is particularly distressing. I eventually discovered two things that helped, holding chamomile tea in my mouth, and, bizarrely, pasting the affected parts of my tongue with cayenne pepper. At first I made a solution with water and powdered cayenne pepper, and then I just used straight cayenne pepper as it was easier…

And then, came March 2021. I did not want to write this blog, partly because of how much energy it would take to do so, but mostly because of what I’m about to write. I had my first AstraZeneca vaccine in March. It caused the worst ME/CFS crash I have ever had. I spent many days and weeks unable to do anything but lie in bed – doing what so many with ME/CFS know well: ‘resting’ but without ever feeling rested. I slowly began to recover and took the decision to have the second vaccine in June. The reaction was not as severe, but just as unrelenting. I am still not back to my pre-vaccine state. Essentially I have moved from mild/moderate ME/CFS to moderate/severe ME/CFS. All of my usual symptoms are doubled or tripled in intensity: fatigue, light/sound/skin sensitivity, brain fog, tinnitus, dry mouth, dry eyes, inability to walk for more than a block or so… And then there were other little delights, for example, at some point in September I had mouth ulcers so painful I thought I had an ear infection.

Essentially, on top of ME/CFS I have vaccine-induced Long Covid. I am a “vax Long Hauler”, as some call it. Yes, there are others like me. I am not an anti-vaxxer, and I know talking about my reaction will fuel the anti-vaxxers, which I do not want. It’s important I also say some people with ME/CFS improved after getting the COVID vaccine. I want you to read that sentence again before jumping to the conclusion that the COVID vaccines are inherently toxic. I’ll write it again: some people with ME/CFS improved after getting a COVID vaccine.

Unrelated to the vaccine, a low-grade sciatica I’ve had for years began to ramp up. And then it ramped up again, and again. To the point where I couldn’t stand on the affected leg in the morning the pain was so piercing, to the point I was weeping in pain (weeping is something I’ve been doing a lot of this last year). I went to a physiotherapist and he put me on an exercise regime, but I wasn’t getting better, I was getting worse. Finally I had an MRI in September which showed “Left L5 nerve root compression” or a disc bulge in my lower back that’s pressing on the nerve going down the left leg. Some googling and an osteopath put me on a different regime, but the pain is at times intolerable. Sitting for more than a few minutes increases the pain, lying down increases the pain.

Writing, reading, and resting have become almost impossible. To have ME/CFS and to be unable to sit or lie down is, well, a tiny form of hell. I can’t look forward to watching a mindless TV drama in the evening any more, as the only way I can comfortably watch TV is in cobra position. I’ve had to teach myself to sleep on my stomach, not exactly comfortable.

I was, I am, living on a variety of pain killers. I had a steroid injection in December, which for some can be a miraculous cure to nerve pain, but not for me.

The pain lessened, and then got worse, and now I’m in constant 24 hour pain or discomfort. Sometimes it’s as if there’s a burning coal buried in my calf, or that a hot iron is pressing against the back of my thigh. I can wake up in the night feeling as if someone has kicked me in the sacrum. I used to have some periods in the day without discomfort, but no longer. All this in spite of the pain medication. I’m waiting for another steroid injection, as I’ve been told sometimes it needs to be done in a slightly different place, but right now all I see in my future is pain, and fatigue.

Most of my waking hours revolves around trying to alleviate discomfort or heal my body. I meditate for long periods twice a day (lying flat on my stomach, the only possible position). I consume all the appropriate foods and supplements. I’m lucky to have a couple of skilled friends who generously offer their time and knowledge. I’d love a month or more at a spa with thermal waters and clinicians / body workers specialising in my various issues… or a series of MDMA trauma sessions in the Netherlands to give me a totally different experience of life, even if only for a little while.

But even if I knew where to go, these things are, for me, unaffordable.

My Burning Mouth Syndrome did improve, it’s not gone, but it’s much better, so there is that to be grateful for. And lately I started developing other weird symptoms: nausea and a short lived spike in my body temperature after eating or drinking something hot; my eyesight suddenly going blurry. And then, the other day, I was doing my cobra-position TV watching, and noticed a lump on my throat. It’s probably been there for a while. I haven’t exactly been paying much attention to how I look. My doctor thinks it’s a thyroid goitre, and has booked me in for a scan, most likely it’s just a watch and wait situation. It’s not giving me pain, and although I freaked out for a couple of days, it feels the least of my concerns.

What else about the year? Anything good at all? Well, yes. I try to remind myself. I turned 60 in August. I spent an afternoon with wolves.

And, I finished my novel in late spring, the novel that won the 2019 Bridport Prize. I finished it largely thanks to a Project Grant I received from Arts Council England, and The Literary Consultancy assessment and mentorship process that was part of the Bridport prize. Jonathan McAloon gave the initial assessment: a highlight of my writing life. He wrote “…of the fifty or so novels I have written reports on through the TLC, whether from first time novelists, those who’ve won a read like yourself, or established authors, your novel seems the most complete, and has given me the least causes to criticise.” My TLC mentor, Anna South, wrote in one of her final reports: “It’s very likely Samantha will prove to be one of those rare first person narrators who’ll live on in my memory long after I’ve turned the book’s final page.”

For various reasons the novel was ‘on hold’ for the rest of the year but it’s now on submission to agents.

And, also thanks to Arts Council England and to Sam Ruddock at Story Machine, I wrote four blogs that are mostly aimed at supporting writers living with chronic illness or disability. You can find them here. We recorded two podcasts where Sam interviewed me about my work and my life as a writer with chronic illness. I’ll make a post as soon as they’re live. Also part of this ‘project’, I led a webinar for writers with chronic illness, disability and other chronic conditions. While we did not discuss our situations in detail, the participants expressed how relaxed they felt knowing they were writing with others who knew chronic suffering. Some of them were experienced writers, including two playwrights. I shared my approach to writing, and the work that came out of the exercises was vibrant and exciting. What I did not expect was how nourished and energised–and relaxed– I, as workshop leader, would feel. Normally leading workshops on Zoom drains me, but not this time. Thanks in part to Sam Ruddock’s lovely hosting, but the main reason was simply being with those who understood what it meant to have one’s writing life impacted severely by physical challenges. Several of the participants expressed interest in further workshops, I’m truly hoping Sam and I will be able to do this.

Ronan taking over my job (most of writing is staring into space, right?)

But, after I’d finished my novel and was waiting for the next step in its journey, I stopped writing fiction. For the first time in many years I didn’t have a novel or short story to attend to, instead I attended to my multiplying physical issues. My mental health kept on spiralling downwards. I stopped reading. I haven’t read a book since October 2021. Normally I read at least two novels a month. I can’t read other than in cobra position–lying on my back or my side hurts too much, but mostly I stopped reading because I was just too depressed or too involved with all else.

I have felt so isolated in all this. My friends are, for the most part, dotted all over the world and I’ve found it hard to keep the connections. I send an email, and can’t follow up. I start a WhatsApp conversation, only to drop away for days or weeks – or months. And if I do manage an actual conversation, talking exhausts me. I used to be heavily involved in animal rescue on Facebook. No longer. Some days I can barely manage a single email. My to-do lists become longer and longer, or just get lost in the morass on my desk.

An astrologer friend of mine who I’d lost touch with, reached to me out of the blue. I managed to tell him a little of what was going on. He decided to check my chart: it is as if you have been in the centre of the world’s chaos. He also said things should ease gradually, oh that this be true!

I started The Shapeless Unease in January and while I’m reading it very, very slowly, perhaps this marks a shift. In the (distant) past I had an extended period of not writing, yet when I started up again I was, as if by magic, a better writer. I have to trust this will be true for me this time.

Sam Ruddock has invited me to write more on what it means to be a writer living with chronic illness, to share any supportive tips I might have. I’m excited about this, and daunted, given my recent track record of zero creative writing… As I put this sentence down, I realise I need to re-think what “creative” writing means to me. In November I started the Page-a-Day process with a dear writer friend. It seems to me I’m just cataloguing my woes, but my friend insists not. Perhaps she’s right. Perhaps one day I’ll read through, and find something beautiful.

I recently managed–forced myself really — to attend a five-day Arvon writing workshop in Devon where Samantha Harvey was one of the tutors (she’s just fantastic). This in itself is a massive achievement, I’ve not been anywhere for 2 years (I’m paying the price however, with a kind of tiredness you might feel after several back-to-back transatlantic flights). But…. I did make lovely connections, and have some unexpected ideas for another book, thanks to a chat with one of the participants over supper. How does a comic memoir about a ruby deal going catastrophically wrong sound? Synchronistically on Twitter I saw that Ruth Millington heads up an Extreme Holidays Podcast…  I asked if she might be interested and she is!

And, the physical story isn’t over.

In two days, on Sunday, I’m having laparoscopic surgery to remove a large and growing ovarian cyst. I’ve been putting this off but finally felt it was time to do it. They’ll remove both ovaries and my remaining fallopian tube. The last time I had laparoscopic surgery I healed well, apart from my belly button incision, but I was not as debilitated as I am now. If you can think of me, that would be lovely.

I have a wonderful new GP who told me to do some grief work around this operation. When I said I’d never wanted children, he leaned close and repeated firmly, Do some grief work. My partner has gathered stones and seaweed from the beach. I’ve added a stone from the ocean where we spread my mother’s ashes in Crete. I wish her to be with me now, more than ever. We’ll do the ceremony on Saturday. I hope for sun. I hope for a good day.

I simply hope.

For my book to be published. To be pain free. To no longer be in the centre of the world’s chaos.

And there is much to be grateful for. My partner, who goes through all this with me. It’s easy to forget sometimes it’s as hard to witness a loved one suffer as it is to suffer. I’m grateful for my brother, who checks in on me from whereever he is, Portugal, Brazil. For the friend who brought tea and food when my partner was away and I had to go to Accident and Emergency, and waited for me in the cold for hours until I was seen. I’m grateful for Ronan, who seems to know something is wrong.

I’m I’m grateful for trees. For stars.

And I’m grateful if you’ve managed to read this far. (Please forgive spelling /grammatical mistakes and looping repetitions, my mind is not at its best, to say the least!). There is an update below the tree.


Update, 20th February 2022
The operation went well, as far as I know. I was not warned about post-operative gas and experienced the most extraordinary pain for about 24 hours because of this. And then, the sciatic pain doubled. To the point of utter despair. I made a fundraiser to try and help me find answers, and it tells more of the story. I will soon write another blog about my process around this, which has not been easy – to ask for help.

Update, 9 March 2022
A new blog: The Unendurable – Part Two

Three previous blogs of mine on my physical situation:
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible

What Rough Beast

Letting go of what you have already written and starting a new creative project

My final guest post on Story Machine is up! How do you move on from one novel to another? It’s not easy, that’s for sure. At least not for me, but an unexpected situation helped… read about it here.

Ronan, my black cat, staring at me from his favourite box

Ronan, of course, is always happy to offer his advice….

Completing Your Writing Project

I have another guest post on Story Machine– an interview where I discuss finishing a writing project – a novel in my case. There are a number of questions, for example, “How do you maintain momentum to finish a first draft?” and “If I need help with my work, a professional editorial eye, where can I find it?” You can read my answers here.

Ronan waiting patiently (not!) for me to get off the computer….

Writing When Ill

I have a new guest post at Your Writing Launchpad that talks about what I do to help me get back to writing when my illness (ME/CFS) has chomped away at my confidence, or I am only able to write for a very short amount of time per day. The tips work for anyone however, and are focussed on how to create a daily writing practice that you can stick to. You can read the blog here.

Ronan cuddling close, staring at me with his big yellow eyes

My ever trusty ‘nurse’, Ronan (he does great acupuncture…)

On Writing First Pages

I planned on posting about this interview with me on the day it was published, in the hopes of getting the word out about this fantastic competition before the deadline, but then I had an M.E. relapse. Well, the First Pages Prize IS a fantastic competition, and now you have a year to plan to enter the next round! I wrote about my experience in 2019, and since then the Prize has gone from strength to strength. The prizes are exceptional, a substantial cash award, partial developmental edit, and consultation with an agent. So… sign up to their newsletter so you recieve news of when they are open for submissions again (they also now have an additional prize for creative non-fiction).

As I say in the interview:

For me, entering competitions is always worth it, even if I don’t place. It encourages me to look at my writing with a different eye, the eye of a reader. It encourages me to polish and edit.

And, I find deadlines extremely useful in getting me to the desk and working. I’m not sure I ever would have written as much as I have if I hadn’t sought out competitions to enter (and literary grant applications to complete!).

Grindstone Literary Ltd 2020 International Novel Prize

I was wondering why my phone was bombarded with tweets yesterday, I didn’t check what they were at the time as I was having a conversation with my better half in a café, a rare treat, and I didn’t want to interrupt that. And then I got home, and…. well, you could have knocked me over with a feather. I’d forgotten I’d entered this wonderful, fairly new competition. And then to see my name, and the name of my novel, presented like this, I couldn’t believe it. Just last week I’d finished a truly gruelling ten month editing slog getting Seagull Pie ready for submission to The Literary Consultancy for manuscript assessment and mentorship (part of my prize for winning The Bridport Prize First Novel Award) and then I came down with my expected physical crash, bedridden for nearly a week. Well, as you can imagine, this news perked me up quite considerably! There are some exceptional writers on the short and long list so I am truly honoured to have won. Catherine Cho was the judge, an agent at the prestigious Madeleine Milburn Agency.

This really does feel like an extraordinary end to an extraordinary year. In some ways I have been lucky, focussing on editing the novel has given me some respite from the pandemic. Some structure to my day. It’s not been easy, although I’ve so far managed to avoid COVID, my health has had many unpleasant twists and turns, but I was so glad I had this one thing calling me, every day, this story that means so much to me.

Thank you all at Grindstone Literary for your hard work in this competition, and to all those who have said such lovely things on hearing my news. 

IT’S NOT COVID

When coronavirus moved onto UK shores I noticed, whenever I said “I’m not well,” in reply to “How is your health?” I’d hurry on to add, “It’s not coronavirus.” And more recently (fewer syllables!) “It’s not COVID.” I suppose I was saying, “It’s not so bad.” Who was I trying to reassure? Me, or them?

Actually, during the early days of the pandemic, I was not especially afraid of getting coronavirus. I do not usually catch ‘normal’ illnesses (colds, flu etc.), and, during February and March I was enjoying a remarkable period of wellness, spending my time and thoughts on the second draft of my new novel.

Of course it very soon became clear that COVID-19 is not a ‘normal’ illness, and when my health deteriorated rather dramatically with some delicious new symptoms, the very thought of feeling even grimmer than I was already feeling seemed unbearable. In fact, I have no idea know how my body would react to the virus – I don’t have any of the conditions that would put me into the government’s ‘high risk category’.

What I do know is that some people who “recover” from COVID-19 are not, so far, fully recovering. They have similar symptoms to those who have ME/CFS. There is even a new term in the pandemic vocabulary: “Long Covid”.

With an estimated 25% of people with ME/CFS housebound or bedbound, patients suffering from the lowest quality of life of any disease to which it has been compared, including multiple sclerosis, and only about 13% of patients are able to return to full-time work, the potential for many new cases of ME/CFS in the wake of COVID-19 is no small matter.

Lockdown is opening up in England. But it is not opening up for anyone with the severer forms of ME/CFS. My own ‘lockdown’ life has been largely unchanged by the pandemic.  And, due to Long Covid, it’s possible the medical community – the world at large – will finally give ME/CFS the focus it needs, a condition of which my own GP said: “We do not know what it is, and we do not know how what to do about it.” Will she, at some point, be able to tell me, “I believe I can now help you?”

Which brings me to what I really wanted to share today: the question of whether anyone who is relatively well and able-bodied can understand the subjective experience of someone who isn’t. I wrote in an earlier blog: “In spite of finding my health issues tedious to dwell upon, just sometimes, I’d like someone to know, to really know what it is like to live in my body.

I tend to stay on the periphery of the ME/CFS communities because I often find myself lost in a depressive warren of questioning (Is there something I’ve overlooked? Should I find the money to pay for the more accurate Lyme/Rickettisa tests not available on the NHS? Should I be tested for Tethered Cord Syndrome? What about mould?), but recently on Twitter I stumbled across Vlad Vexler’s ME diary.

Vlad is a philosopher working in ethics and musicology, and, he has ME.

He has recorded over 50 two-minute videos, articulating beautifully and elegantly what it actually means to have a chronic ‘invisible’ illness. Many of his symptoms differ to mine, but I found myself deeply moved listening to him. The talks – more a conversation than a ‘talk’ –  are wide-ranging: how people with ME are judged and misrepresented when they temporarily function better; how people with ME have to fake and fabricate to enjoy simple pleasures; how people with ME are, in fact, too unwell to be “fatigued”, to name but a few.

Vlad has compiled these diaries on YouTube, and if you are able bodied, I urge you to watch them. Two + hours might seem a lot, but he is an engaging, vibrant speaker – even at his most ill. And, two hours or so is so very short compared to how long many of us have suffered with this illness – over 25 years in my case. And, if you have ME or a similar condition, I am sure you’ll find a great deal of comfort in his words. It is certainly a comfort to me to know there is this voice in the world, telling the world about us.

And, I worry he speaks to the ‘converted.’ So please listen, please share.

Vlad’s ME Diary Episodes 1-10 https://youtu.be/8ql5Lc3wM8U

Vlad’s ME Diary Episodes 11-19 https://youtu.be/agYrsFAfm5o

Vlad’s ME Diary Episodes 20-23 https://youtu.be/OWZut_i4g0g

Vlad’s ME Diary Episodes 24 https://youtu.be/lqVpTERA-Pk “It’s Not Fatigue”

Vlad’s ME Diary Episodes 25 https://youtu.be/Dz62cFl6TDU “Disability and Possibility”

Vlad’s ME Diary Episodes 26-54 https://youtu.be/5AtoIB0yJ8I

Covid-19 has perhaps shown many of us just how connected we are; and just how important it is to stay connected. It is often in the darkest times we deepen our humanity – we reach out to others (even if only via Zoom) and we begin to enquire into the experiences of those who have it worse than we do. In this way we make the world a better place.

Two previous blogs of mine on my physical situation:
More Things I Don’t Want To Talk About
On Being Invisible

Bridport Prize Award for a First Novel 2019

Judge Naomi Wood presenting the award

The Bridport Prize recently tweeted a link to a TV interview (see below) with me about my novel, Seagull Pie, winning The Peggy Chapman-Andrews Award for a First Novel. The tweet also said: “Dreams do come true.”

To win this prize, in such a prestigious competition, is a dream beyond my imaginings.

The whole process has been extraordinary: I actually forgot I’d entered the competition, and when, six months later I was told I’d made the longlist, I was stunned. To progress further I needed to send in an additional 10,000 words (my initial submission was 5000 words). By a stroke of luck, I had the words, I’d written them only a couple of months previously at the L’ATELIER writers retreat in France. But the words were very rough, entirely unedited. I had but a few days to send them in. I was in Brooklyn at the time, visiting friends. I worked frantically into the night. My friends barely set eyes on me.

I managed, but I knew the likelihood of being shortlisted with those rush-edited words was extremely slim.  Nevertheless, I ascertained the date when I’d be notified, as the next stage would require a further 15,000 words. Words I did not have. In just a couple of weeks I was due to attend the Banff Centre for Arts and Creativity’s Autobiography and Fiction with Electric Literature residency, a residency during which I was supposed to be working on a new project, a linked-flash novella, but thankfully the faculty did not mind me changing plans to work on Seagull Pie. In two weeks I worked harder than I ever have, and wrote 20,000 words. I had until the end of September to edit them, but given that another novel I recently finished went through over 50 drafts and took me nearly nine years to complete, this was all a very different writing experience for me.

I was positive I would remain on the long-list, and very happy to do so: there were 1,075 submissions for the award and twenty were long-listed.

I was absolutely stunned to be told I was shortlisted, and then, to win? I’m still reeling.

I feel I’ve had an affair with the Bridport Prize ever since the early days of my commitment to being ‘a writer’ (in my late 40’s). I’d thought of myself as a ‘novel writer’ most of my life (without writing more than a few pages of anything!). But, in 2007, after shelving a few chapters of an extremely questionable science fiction manuscript, I focussed on writing short stories. I entered a story into the Bridport Prize short story award in 2010. The story was a finalist, in the top 100 of 6000 entries. I was overjoyed, it seemed proof I could, actually, write. And then, just two years later, another story received a ‘Highly Commended’ award. I was over the moon. I went on to write other stories, and place in other competitions, but this commendation was a high point.

I stopped writing short stories and toiled for many years over a novel set in Sri Lanka. In 2015, I took a brief detour from this novel and began writing Seagull Pie. The story behind this work has been with me most of my life, and I knew one day I’d use it either in a memoir or a novel. In fact, in the mid 90s, when my sister-in-law and author Susan Swan heard about my time living in Donegal as a teenager, she said: “You absolutely must write this.” I kept putting it off, however, and two months after I finally began, my mother died. One of the main characters is based on her. I couldn’t continue. I went back to the other novel, finished it, and early this year signed up for the week-long retreat at L’ATELIER to re-enter the world of Seagull Pie.

I thought, “Now or never.”

That Seagull Pie has now won first place in the Bridport prize novel award category, is an incredible honour, especially for a story so very close to my heart. And my dream of becoming a novel writer? It looks like dreams do indeed come true. I know my mother would be so proud I won the award. I’m sad I didn’t get to see the smile on her face, I’m sad she didn’t get to see the smile on mine.

With judge, Euan Thornycroft from  A. M. Heath Literary Agents A. M. Heath Literary Agents

The powerhouses behind the award the prize are The Literary Consultancy, A. M. Heath Literary Agents and Tinder Press.The main judge this year was the wonderful Naomi Wood, author of The Godless Boys, Mrs. Hemingway and The Hiding Game. How could I not still be reeling?

I still have the second half to write, but it seems to me events are conspiring to make absolutely sure I don’t put it aside again. I’m extraordinarily grateful. Perhaps my mother is indeed watching over me, and giving the universe a nudge.

Letter to Banff

This August I was incredibly fortunate to have attended Banff Centre for Arts and Creativity’s Autobiography and Fiction with Electric Literature residency.

All Banff Centre’s programs are highly regarded, but when I saw they were working together with the illustrious digital publisher Electric Literature, and that the focus of the residency was to “explore the distinctions and intersecting themes between genres, such as when to be beholden to the truth and when to break free from it, writing fiction vs. memoir (and how to decide which is which), and teasing satisfying narrative threads from real life“, I knew I had to apply. I’m working on a fictionalized memoir based on my time living in Donegal as a child.

I certainly did not expect to get in, but I did, and I was also awarded financial aid from the Centre and a travel grant to help with costs.

The experience was exceptional: an extraordinarily diverse and talented group of participants, editorial consultations and group seminars with Electric Literature editors Halimah Marcus and Jess Zimmerman, group and individual discussions with guest faculty Meredith Talusan and Susan Choi. We also had the honour of attending a deeply inspiring guest speaker event featuring the Canadian poet, essayist and novelist Dionne Brand. There were two reading nights where all participants had a chance to read from their work.

Most of my time, however, was spent holed up in my gorgeous room (the Center’s accommodations have recently been extensively renovated) looking out onto pine trees and the mountains while tapping away at my computer. All my needs taken care of, and with only supportive writerly distractions, I managed to write 20,000 words during those two weeks.

This was not my first time at the Centre –  I participated in the Wired Writing Studio in 2011 (two weeks at the Centre and twenty weeks online mentorship with author Marina Endicott) – and I sincerely hope it will not be my last. While this particular residency was special because of Electric Literature’s involvement, the general atmosphere, surroundings and participant support at the Centre could not be more encouraging for anyone involved in a creative endeavour.

Thank you Banff Centre, thank you Electric Literature!

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