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.
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.
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!
I am engaged in a writing practice with a friend, a practice I call Page A Day. We write a page – of whatever arises – every day, and share with each other. In the past I have had some success with this practice, producing short-form work that I could edit for publication. These days it seems to be mostly a kind of journal. I’m not happy about that, but there is not much I can do, it feels. It is what ‘comes up’. There was one piece my friend said she thought should be published in some way, part of a longer essay perhaps, as it was about one of those subjects no one likes to talk about, not if it applies to them: the subject of loneliness. It’s the same with chronic illness, and death/grief, the other things I have in fact written about in this blog, not really wanting to, but somehow feeling compelled to do so. I have written before about loneliness, but I suppose it’s asking to be talked about again.
This isn’t an essay, but it’s the best I can do for now. At the end of the blog I will copy the “page a day” I wrote.
As a writer, and an introvert, I actually need to be alone for long periods, to create, to recharge, but being alone and loneliness are two very different things.
Loneliness is of course a ‘side-effect’ of having a chronic illness. And, as I wrote in the above mentioned blog, there are other circumstances in my life that contribute: my beloved partner David’s work takes him away for nearly six months of the year (each trip about 10 days to two weeks long) and the fact we don’t have children and that we have moved around so much and don’t have roots where we live. Most people our age have full lives and families and enough friends, so it is hard to make connections – particularly for myself, being a writer and so my ‘work’ is at home, but mostly because I am chronically ill.
Friends drop away. This is a fact for those with a chronic illness. We often have to change plans last minute, or we can’t travel far to meet people. These limitations have a knock on effect: in the end it’s just too much trouble for people to fit into our limited lives. And, when I’m sick, I feel quite vulnerable, there are not many people I feel truly comfortable being sick around. Instead I tend to over exert myself to fit in with their level of energy. So it’s easier just to wait things out before I suggest meeting up for a tea or coffee. But it’s a vicious circle: loneliness actually alters the immune system. And another great article in The Cut on this subject: What Loneliness Does to the Human Body by Ashley Fetters.
I have a number of close friends in the world, but very few living near me. Yes, there is the phone and WhatsApp and Skype, but it is absolutely not the same as meeting in person. I can literally feel it in my cells, a shift, a brightening even, when I’m with someone and engaged in a meaningful interaction.
I have in the past year made a concerted effort to make sure I at least get out and sit amongst people at a café, and my monthly writing workshops are not only a fulfilling experience for me, but have also brought some lovely people into my life. But still, I have frequently found myself in that empty, despairing place that is loneliness.
This is the piece I wrote during one of these times:
When I go upstairs for my lie down, Ronan follows me, and if he doesn’t I call him. He usually starts to knead and purr by my side and hopefully will curl up next to me. I put my arm around him. Sometimes he moves away a little or stretches and I stretch out too, so that a part of me is touching him. Sometimes I hold onto his tail. I love the softness of his fur. The warmth of him. But it doesn’t ease my loneliness. I’d like someone in the house. They can be doing their thing in their own room, but I want someone nearby. Just to know they are there. The worst is at night when I’ve watched too much TV, too much Code 37 Sex Crimes and First Dates. When I’ve had enough of TV I feel the dark cloud fill my stomach. Usually I get up and go to the computer, but I know I should sit with it, and just be with the feeling, to let it come through. To be present with myself, with my loneliness. To be the person in the house, just there, doing their thing.
I had to keep it all hush-hush until the award presentation on May 3rd, but oh it was a happy moment when I heard my memoir/creative non-fiction manuscript won second place in the Stockholm Writers Festival First Pages Prize. First prize went to Sara Johnson Allen, and third to Sarah Fuchs.
As I recently said to Lizzie Harwood, Vice President and First Pages Prize Founder (and author of the wonderful memoir “Xamnesia“), it is very unusual for a writer’s prize package to not only offer a really generous award in financial terms, but also to cover festival fee, accommodation, a travel stipend AND developmental editing of the first pages. I very much doubt there is another competition that does this, anywhere.
With this competition, it felt to me the Festival was not only hoping to give encouragement to the prize-winning writers, but really looking to support them to take a step forward with their work and their career. It’s nice to win competitions but then you go back to your quiet little room and try to face the blank page yet again. It’s a short lived ‘high’. But winning one of the prizes for the First Pages Prize felt totally different, as if I had been taken by the hand and guided, supported, inspired, encouraged in my long term journey of being a writer.
I had not been to the Stockholm Writers Festival before, nor to Stockholm, and to be honest I was bowled over.
The Festival has a very specific focus: to help writers find their path to getting published. In fact you cannot enter the First Pages competition if you have a literary agent.
There was so much about the Festival that impressed me. I have been given an award for my writing in public before, but it was a fairly short-lived moment in the spotlight. This time, the judge, Paul McVeigh, spent some time talking about each of the entries and what it was that impressed him. I am sure I was not alone amongst the winners in feeling a little weepy with gratitude as I sat there, listening to what he said. The prize was also presented by Jonas Nabbedo, Vice Mayor of Culture and Clydette de Groot of the de Groot Foundation (who generously support the prize packages), and they both gave heart-felt and inspiring talks about the importance of prizes for writers, and about the importance of writing. After this, all three winners had the opportunity to read from the first page of their manuscript. I love giving readings (I flubbed my lines!).
The Festival’s organisers keep the participation numbers fairly small, and this means that although I may not have managed to befriend everyone, it still felt intimate and easy to forge connections. The sessions I attended were exceptional, including Jane Friedman‘s “How To Get Your Book Published”; Julie Cohen’s “Learning Story Structure from Pixar Films”, Jess Lourey and Jennifer Dahlberg‘s “From Traditional to Indie” and Paul McVeigh‘s “Creating your Platform”. And although some sessions overlapped, it was possible to have a ‘taster session’ with each of the faculty during one of the events. I was able to spend 20 minutes with Cassie Gonzales on ‘Making Your Dialogue Do the Heavy Lifting’ for example.
I learned SO much. I have a notebook literally packed with scribbles.
I pitched my novel to two highly regarded agents. I have never I’ve done this before – not in person. Terrifying, but great practice. Both agents want to see the novel, and one in particular I felt a strong connection to (I must do another read-through to make sure it’s in the best shape possible!).
I also was honoured to be able to spend time with Clydette and Charles de Groot. What a pleasure! And special mention should go to the efficient (and gorgeous) team of volunteers who were on hand whenever I was confused, or lost (or lost something!).
I did make friends during the weekend, and I want to return to Stockholm as the little I saw I loved. So all in all a truly spectacular, informative time.
If you have read my previous two blogs about my ‘health situation’ you might wonder how I manage to participate in such a full-on Festival. The truth is it is incredibly challenging. I usually spend about 15 of each 24 hours lying prone in some form or other – trying to sleep. sleeping, resting. And this was 15 hours of sessions, events, walking, connecting…. It was hard. Very hard. At times I felt horrendous. But I was also doing something I love to do: spend time with other writers. Usually I get quite ill after such intense periods of activity. So far I’m just mindlessly exhausted (hence how long it’s taken me to write this blog), so I’m crossing thumbs all the positive energy from the Festival has helped my immune-system.
Photography: Birgit Walsh Photography
(The photograph of the volunteers which was taken by Catherine Pettersson Founder of the Stockholm Writers Festival)
I shared my ‘invisible illness‘ blog on Facebook, and in the comments someone suggested I had more to write on the subject. I told her writing the blog made me quite depressed, putting my health situation ‘out there’, in public. For me it seemed to concretize what was going on, to make it all the more real, all the more inescapable. And not long after writing the post – although I can’t prove a connection (there were other factors) – I had a serious CFS/M.E. relapse, putting me entirely in bed for nearly a week. It was the most serious relapse I’d had for months. Imagine having a severe tropical illness, or something like pneumonia, and you are in hospital. You are on the road to recovery, but still bed-bound. This is how such a relapse manifests for me.
I had felt something coming on for several days prior, one of my least favourite chronic symptoms rachetting up: a sensation of pressure in my head, combined with intense bi-lateral tinnitus increasing in volume from the time I wake in the morning until I go to bed, at which point it is almost unbearable. I can do nothing but listen to the clanging, a tone of a school alarm alerting you to a change of class, or the sound of a fire alarm in a public building. It is this particular tone. I’d have a digit removed if it meant this symptom could magically disappear. It started about 3 years ago, and occurs every single day. It’s worse when I’m tired or ill, but it’s always there. An alarm going off inside my skull.
What I haven’t written about my health situation is my anger. My profound despair. My hopelessness. My depression. Much of the time I ‘manage’. I’m good at managing. If my symptoms are fairly consistent and not entirely debilitating, and if I can apply some kind of routine to my day, and if, every so often I am well enough to get out to meet with a friend, I am not angry. I am not despairing. I am managing. Those emotions sit there quietly in the back waiting until I am once again thrown into incapacitation as I was last week. Then I think to myself, “I cannot carry on like this, I just cannot.” When I am so debilitated I can’t write, I cannot see friends, I can barely even read. Life doesn’t feel as if it is worth living. These are hard times.
I went through a protracted period of incapacitation about a year ago, and I realised I had to take stock. If my life was to continue like this, then what? I was at the end of my tether. I have been suicidal in my life, I have had several breakdowns, but this was not that. This was taking a good hard look at my situation. The facts. I knew I needed two things: nature, and a community. I needed to be in a place where close friends would be willing to come to me, to sit quietly perhaps, to make me a cup of tea. Or not, just to be in the house, so I can hear them chat away to themselves. The clink of cups. A kettle boiling. When I am ill it is often better for me to be alone, but I like to know there are people nearby.
Until that point I was very isolated. I had no friends in this city I’d been living in for five years (word of advice: if you have a chronic illness, are a writer, do not have a ‘job’, have no children, do not go to church, and your partner’s work takes them away for nearly six months of the year, do not move to a city where you don’t really know anyone). It’s not that I don’t have friends, I do, several wonderful friends, but most of them do not live in the country I live in. Isolation is well documented to adversely affect health.
So, I forced myself to teach once a month (doing any kind of regular work, a normal ‘job’, has been impossible for decades, as I never know when I might be too ill to do the work).
My teaching has brought a handful of beautiful people into my life. But it’s not enough, particularly since they don’t live within walking distance. This is what I call community. Someone next door. Someone across the way. A tiny village.
Nature is our minuscule patio filled with the sound of the industrial fans from the shop beneath us and the shop beside us. The patio is also a thoroughfare for those working in the shop below, so is never private. There are no parks near enough for me to walk to, and although the English Channel is but ten minutes away, it entails crossing a highway. This might not seem like a big deal but I am so noise sensitive (hyperacusis) going near this road actually hurts.
We need to move, not just because where we live is not conducive to my health, but also because our overheads are unsustainable. And then I worry: if we move far, to a new place, what happens to the friends I’ve managed to make here? Will I have to start over? What about the wonderful psychiatrist homeopath I am able to see nearby on the NHS? The TCM practitioner I’ve just found? There are so many other factors that make any kind of move complex and difficult, let alone the actual move itself. This is barely conceivable for me to manage.
Everything feels like a catch-22.
I have avoided talking about my anger about my illness. It’s not present right now. Anger is not an emotion I feel frequently. I can count on my two hands the times I’ve actually been enraged. I’m not suppressing anger, it’s just not there. But I am angry about my illness. I do not feel I signed up for this. I remember a friend, some years ago, telling me I did not seem like a sick person. I do not have the profile of a chronically ill person, whatever that is. Does anyone sign up to be ill? No, of course not. Also, I do not believe we are given these challenges by the universe to “teach” us something.
But we do have an opportunity to take a look at how we react to challenges, how we are ‘with’ whatever is going on. We can learn from what we are going through.
In the early years of my illness, when it manifested as bouts of acute bacterial and viral infections, I learned something: if I fought what was going on (a literal physical sensation of trying to push my body, my discomfort, away from me), it worsened the symptoms. If I physically relaxed, and was ‘with’ what is, things eased. I did not get well, but my experience of whatever was going on improved.
Now that the progression of the illness has changed, now that each day includes long periods of discomfort, I am neither with nor against what is happening. I am simply bearing it. Even when I tell myself “I cannot bear this.” I am bearing it. I have no other choice. I will not end my life, even though sometimes it feels as if my life is ending me.
I have avoided talking about my despair. In my blog about having an invisible illness I linked to a post in the New Yorker about memoirs of disease. One of the memoirs is ‘Sick’ by Porochista Khakpour. I haven’t read it. I had come across it some time ago, and thought I should. Porochista Khakpour was finally diagnosed with chronic Lyme disease and treated with antibiotics amongst other things. A few days ago I decided to find out how she was doing. What I discovered was the thousands of dollars it took for her to be diagnosed and treated. More money than I have, far, far more. She raised much with crowd funding. I am not sure I could do this: my shame around my illness prevents me (another thing I haven’t written about). And then I learned she is still not well. By the time I finished reading all this, I could barely breathe. I don’t have the money to pay for this kind of testing or treatment. And even if I do, it may not make an iota of difference.
I was at rock-bottom. Sick, despairing, hopeless.
But at the bottom there is nowhere else to look but up. Once again, I knew I had to take stock. I had to turn my focus to the aspects of self that are not my illness.
I recently won a prize for my writing (I cannot announce the details publicly for a few weeks), and I am reminded: I am not just a sick person. I am also a writer, even if all I can do is to think about what I would like to write. I am also a friend, even if all I can do is talk to you on WhatsApp.
I am still here and the day will unfold with its challenges. I haven’t given up yet.
I recently read a lovely post on Instagram, the words of a brave young woman who had CF (cystic fibrosis), it moved me deeply to hear how this she described the challenges of her short life, as it felt so similar to my own challenges. I hesitated in commenting as I felt my health situation could not compare, but perhaps someone out there needs to read how my life is for me, and perhaps not feel so alone.
Like most children, I used to pretend I was able to make myself invisible. It seemed I was quite good at it, I could enter and leave rooms without anyone noticing, I could ensure a teacher would not choose me to answer a question.
But the kind of invisibility I am writing about now is quite different. I am seen, but not seen.
For the past 24 years have a chronic illness (variously diagnosed as M.E./CFS or CFIDs or possibly chronic Rickettsia, a lyme-type pathogen), which to the “chronically well” goes largely unnoticed. Much has been written about ‘invisible’ illnesses and the challenges of having one, and I’ll put some links below this post, but I suspect it is mostly people who either have an invisible illness, or those caring for them, who read these things. So I’m writing this in the hopes that someone stumbles here, who is unaware of how an invisible illness is experienced by someone who has it.
To most people I look fine, I sound fine. I seem to be doing things healthy people do. I don’t have a feeding tube up my nose, I don’t have to walk around with an oxygen tank, I don’t even have an inhaler. I don’t have a terrible skin affliction. I have all my hair. In fact I am lucky to have a lot of hair. I am rarely pale. I walk at a normal pace, for the most part, although this is generally because I’m trying to keep up with a chronically well person, I hate to be a drag. My illness is so invisible, that even when I tell someone, I feel really dreadful, they carry on treating me as if I am feeling perfectly fine.
Actually, this is often my preference: to be treated as if I am as healthy as I seem. My illness is a boring subject for me, having had it now for so long.
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. There are a few people who have a good idea – usually those with a similar illness or the loved ones of those with a similar illness. I also do not want to be pitied, or to have people give me that Oh you poor thing look.
Generally I try to keep my health situation to myself. Illness is like death and grief. For the most part, people don’t want to have anything to do with it, and if I do talk about it, instead of simply asking, Tell me how are you affected by this, I’d like to know, most pull their eyebrows together and frown sadly, which is meant to look sympathetic but really is a kind of defence. I know, because I’m guilty of doing this myself. I also had one friend who would do everything she could to hear me say, Things are good before she would continue her conversation with me, or she would somehow find something in what I said to prove to her that I was doing better, that all was fine, and tell me so.
Or, people carry on as if the illness (or the grief) simply doesn’t exist. Being on the receiving end of these approaches is challenging. I may be chronically ill, but I am also so very many other things, and, I am often feeling really awful, in spite of appearances, and it helps me to have all of my ‘selves’ included in a friendship.
If you lived with me, my illness would not be invisible. You would see that just two hours after getting up in the morning, I am forced to go back to bed for an hour or so (on a good day). You would see me do some work for perhaps three or four hours at most, and then you would see me spend the rest of my day mostly lying prone. You might see me out and about, doing reasonably well, and then suddenly crashing, and then you’d see me desperate that I cannot be at home, in bed, instantaneously. You would see me leave the house in the evening for my weekly ukulele class, and you would know what an enormous undertaking it is for me. I haven’t taken a class in anything for years because I just felt too awful. I still feel too awful (in fact I’ve gotten progressively sicker over the years) but now I’d rather be taking the class than not.
If you lived with me, you would see that my symptoms usually increase over the course of the day, so that by the time I go to bed, I’m entirely overwhelmed by them and can barely think or speak. If you lived with me, you would know that a mumble means Night night, I love you.
The disease has changed for me over the years, there was a time when I would in fact a few weeks of relative health, and then severe viral or bacterial infections of some kind. But now, it is a daily experience of navigating relative levels of discomfort.
I am chronically ill and yet I attend to my writing, I attend to my animal rescue work, my friendships, my family, and I attend to my teaching commitments – all done in those few daily ‘useable’ hours. I can’t say I attend very well to these things, but I try.
I even manage to travel, and to participate in some events that demand a great deal of me, and I’ll seem just fine. I might even be just fine. Until I get home, and then, usually, I will get so ill I have no useable hours at all for a few days, or even a few weeks.
This is how it has been for years. You might suggest that I don’t do anything in those few hours, I should experiment with resting the entire day, or that I don’t go on trips. The thing is, I have spent so very many entire days in bed and I want a ‘normal’ life, and so those useable hours, those trips, are precious to me, they make me feel as if I too am a chronically well person, if only for a little while.
There are other interesting challenges associated with this ‘invisible’ illness ( although for some people it is not so invisible, many with M.E. / CFS are bed-ridden or have to use a wheel-chair). One is the name ‘Chronic Fatigue’. Most people will imagine how it is when they are tired. But Chronic Fatigue is not ‘fatigue’, it is not tiredness, it isn’t even exhaustion. It is frequently the severe, all-encompassing, crushing weakness and aching one might have with a serious flu or tropical illness. And then there is the multitude of other symptoms that would fill an entire blog post.
And then there is the unasked for advice. I understand this impulse, I have it myself – to try and ‘fix’ whatever it is that is wrong in someone else’s life. I’d much rather be listened to than given advice, I am a font of advice for myself, I don’t need anyone else to give it to me, unless you have a similar heath issue as myself, and have genuinely found something that has helped you or something you truly think worth trying. However, one of the main ‘problems’ with M.E. /CFS is that no two people have the same set of symptoms, and what ‘works’ for one person may not work for another.
M.E./ CFS is not a considered a terminal diagnosis, yet ME/CFS patients are at increased risk of all causes of mortality, especially suicide. Few people know this. In fact, no-one really knows what M.E. is. My own GP admitted: “It’s a name for something we don’t know what it is, and we don’t know what to do about it.” Personally I think these chronic illnesses are often the result of a kind of ‘cocktail’ – a pathogen and trauma. I’ve tried everything from Mexican Shamans to immunologists, but to no avail. So I try to carry on with my life.
Recently I had brief brush with a frightening, and often terminal disease: cancer. After a few terrible hours writhing in pain in A&E on a Saturday night, a mass was found in my pelvic area, and thought to be a suspicious ovarian cyst. I was fast-tracked for further investigations and then scheduled for an operation to remove both ovaries and fallopian tubes, the cyst to be sent for analysis. For 6 weeks I lived in a new dimension: a dimension where what I had was not chronic, but acute, possibly life-threatening. I cannot say it felt good to be able to tell people of my ‘new’ health situation, but it certainly felt different: everyone was well-informed about cancer and the potential ramifications. I had little explaining to do, and a lot of wonderful support. I no longer felt I was moving through the sludgy, invisible world of my chronic illness, instead everything became pin-sharp and bright – interwoven with a great deal of fear. I was afraid about the cyst, and about the operation. It was my first.
M.E. / CFS does not make me afraid, but it does make me feel extremely limited. I feel the illness has taken away much of my adult life. I realise this is a negative view, and that perhaps I have also learned much because of the illness. I have learned compassion, at least, for those who are in a similar situation.
The operation was not only a success, but miraculously they found no cyst, and only one fallopian tube was removed as it was severely twisted. On hearing this I felt so grateful, so very alive. I try to remember these feelings as I return to my ‘normal’, invisible illness. And that in spite of all, I am here, I am alive, and I am well enough to be writing this, for this I am truly thankful.
Some more information on this subject:
17 Things Healthy People Need to Hear During Invisible Illness Awareness Week
Invisible Disabilities Association
But You LOOK Good
One of many informative pamphlets produced by the above association
The Challenges of Living with Invisible Pain or Illness
Also well worth reading: New York Times article by Lidija Haas on “Memoirs of Disease and Disbelief”
Thanks to a Canada Council for the Arts Grant I am a participant at the 15th International Conference on the Short Story in English, taking place from June 27-30, 2018 at the University of Lisbon in Portugal. The theme is: “Beyond History: The Radiance of the Short Story.”
In an age when private lives appear to be ruled by the force of historical events, we are contradictorily challenged by creative achievements that, even if originating in History, develop a self-sustainable energy, a radiance, so to say, that supersedes material circumstances and/or envisages alternatives for them.
The 15th International Conference on the Short Story in English brings writers of many nationalities to Lisbon, a city where the cultures of the world meet and stories of history unravel around every corner. In this scenario, fiction writers in English, or authors who have been translated into English, together with scholars of the short story, will join in reading sessions, roundtable discussions and panels, as well as in the more traditional paper presentation sessions.
In celebration of the 30th anniversary of the foundation of the Society for the Study of the Short Story, the Conference looks forward to the opportunity of highlighting the variety of ways in which the Short Story becomes a specific form, blurs the boundaries with other literary forms, goes beyond the written medium and borrows from other artistic processes/languages, shaping itself anew in an endless process. Indeed, proving to be an extremely resilient medium, the Short Story has been changing throughout the times and aesthetic tendencies, without losing the kernel that makes it a distinctive mode of the human expressive genius.
On Thursday, June 28th, I’ll be on a panel discussing Flash Fiction in Method and Meaning with Nuala O’Connor and Tracey Slaughter, and on Friday, June 29th I’m reading one of my short stories as well as participating in the round-table discussion on Politics and Short Fiction, with Garry Craig Powell, Rebekah Clarkson, David James, and Robin McLean:
“An age-old question for many writers and artists has been to what extent should politics intrude on art: should we write above politics or face it head on? Can fiction affect or even transform the political climate? Should it even try? Then again, is it even possible to avoid a political stance of some kind?”
You can download the program of events from the website – there are a number of exciting authors reading their work, and a packed program of panels. See you there!