About Sandra Jensen

I am a writer. I was born in South Africa and have British and Canadian citizenship. I have over 40 short story and flash fiction publications, including in: World Literature Today, The Irish Times, Descant, AGNI, The Fiddlehead and others. My work has received a number of awards including winning the 2012 bosque Fiction Competition and the 2011 J.G. Farrell award for best novel-in-progress. I have been awarded Professional Writer’s Grants from the Canada Council for the Arts, the Arts Council of Ireland and Arts Council England. The novel I have recently completed, Ten Virtuous Acts, is a literary adventure set in Sri Lanka during the civil war. I was a guest writer and panellist at the 12th and 13th International Conference on the Short Story (Little Rock, Arkansas and Austria); an invited participant at The Galle Literary Festival, Sri Lanka in 2011 and a six-time participant of the Sirenland Writer’s Conference in Positano, Italy. I attended The Banff Centre’s Wired Writing Studio in 2011/2012. I administer the In Memory of Vučko and AWABosnia websites, raising awareness and funds to stop animal suffering in Bosnia-Herzegovina. I live with my partner, David Crean and my foundling cat, Rónán.

More Things I Don’t Want To Talk About

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.

On Being Invisible

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:

Six Common Misconceptions about the Chronically Ill

What is Invisible Illness? (+ How to Explain it to Others)

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

 

15th International Conference on the Short Story in English

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!

Diving into Story

I’m offering an afternoon writing workshop on Sunday 3rd June 2-4:30pm in Hove at the Tree of Life Integrated Health Centre. (Note: these workshops are now held monthly. Please see the Workshops and Teaching page).

We all have a story to tell, and our stories matter. Stories give us the chance to be heard, stories help us find out who we really are; stories connect us to others and perhaps stories help the world become whole.

We don’t always consciously know what stories we have within us to write, and even if we do, we often avoid actually putting pen to paper. Sitting down to a blank page is a dive into the unknown, a dive that takes great courage. We seek safety by putting on our ‘editor’s cap’ too soon, or by waiting for inspiration before we start writing. If we focus on what our story is going to be about, whether the writing will be good enough, or whether anyone will want (or not want) to read it, we stymie the creative process.

This workshop will support you to discover the exhilaration and power of writing without preconceived ideas about what you should be writing or how you should be writing it, a thrilling and sometimes life-changing experience.

Your stories may be inspired from personal life, your intuition or your imagination, it does not matter: you will be encouraged to step out of your own way and open up your ‘child eyes’ to whatever wants to be expressed on the page. The focus of the workshop will be how to stop thinking about writing and to actually write.

By the end of the workshop, you will have begun at least one story, and you will leave knowing how to continue. No formal writing experience necessary.

For bookings and enquiries please sent me a message or make contact via the Centre on +44 (0) 1273 220159 / info@tolcentre.com.

Though none of us will live forever, our stories can. As long as one soul remains who can tell the story, the greater forces of love, mercy, generosity, and strength are continuously called into the world.“~ Clarissa Pinkola Estés

Writing on the Edge of the Sea

To live — Do you know what that means? To undo your belt and look for trouble….” the words of Zorba, of course.

I’m very excited to announce that Robin McLean and I are leading a writing workshop in Crete this October, the first in a series called ‘Writing on the Edge‘.

Writing on the Edge of the Sea‘ will be a generative and boundary-busting workshop limited to 10 participants, held in the truly gorgeous harbour town of Chania (which has two beaches, the Mediterranean still warm enough for swimming…).

Look for trouble. Come. Details on our website.

 

What Has Been Given To You To Say?

As some of you know I was lucky enough to teach three creative workshops for the Fairway Galle Literary Festival in Sri Lanka in January, as well as a workshop for the British Council in Colombo.

One of the workshops, ‘How To Face The Blank Page’,  was part of the Festival’s outreach North-South programme, hosting students from 8 different national university English Language departments. About 45 students participated. Given the island’s only too-recent civil war, it was inspiring to be working with a classroom of students from different ethnicities of the country. They did indeed face the blank page and some wrote powerful pieces about the war and its aftermath, and they also wrote about the tsunami which took the lives of 35,000 Sri Lankans in 2004.

The two other workshops for the Festival were on Flash Fiction and ‘Diving into Story’, for younger people. For the British Council, my workshop was also on Flash Fiction and was also for younger people. Originally the numbers for this workshop were limited to 20, but at the last minute the number of participants bloomed to 65 when a teacher from one of the schools found out about the workshop and asked if her whole class could join. I have not taught those numbers before, so was a little anxious but the children were not only amazing, so was their writing, as you’ll read below. I took heart in our future, to know there were so many young people with a deeply adult understanding of themselves and the world we live in.

One of the prompts I gave for a short piece was called “Your Gift.”

I asked participants to put aside for a moment any fear of pride, lack of confidence or disbelief in themselves and to imagine the planet is in dire danger (not hard to imagine). I told them the gods had given them two gifts, the first being great skill in expressing themselves, the second something important to be said. I asked them to sit silently for a moment and then to write down the answer the question, ”What has been given to you to say?”

The answers were deeply moving. I read many of these out to the participants and in one case they all stood up and applauded. I read them out myself not just because the children were shy, but to encourage them to hear the beauty and strength of their words. Sometimes it’s easier to hear that in another person’s voice.

I have been collecting some of the pieces, and wanted to share them here:

Look around you. Look at everything and everyone around you. Who are they? What do they mean to you? If you left now and never saw them again, how would it affect you? Would you feel guilty for doing something, or for not doing something? Would you feel guilty for saying something, or for not saying something? If so, then do it. If so, then tell them.

~ Nora Deemer, age 14, Elizabeth Moir School

***

I Live in my mind a brave fearless charming and charismatic young girl with power to change the world. I Live in my life a snivelling scared stupid bitch without even the power to speak up for herself . I Die in my mind noble and valiant thousands of others weeping for me. I Die in my life wishing the girl I fantasised was actually me.

~ Rusandi Rosini Ranasinghe, age 14, Visakha Vidyalaya

***

When someone tells you that they want to make a change in the world, don’t let your narrow mind tell you that it’s not possible. Think about it, in the big picture, it may seem like all the issues in the world have already been addressed and solved, but break the picture to look at the gaps, the missed brushstrokes and the half shaded colours, has every single issue in the world reached a solution?

Ranuli Palipane, age 17, Musaeus College

***

Polluting is something we as humans do and it’s harming our planet. What should we do? We all should be recycling, it’s a good habit and it will save our world and animals. We should also teach our kids, if we have any, to up-cycle. Did you know that every one minute a garbage truck full of plastic is dumped in our ocean? It has to be stopped. Plastic survives for a long time. Did you know that 25 years ago a cargo ship carried 50 containers over the pacific ocean and one of the containers full of toy rubber ducks fell into the water? Still today 200 of those ducks are floating around in our big blue sea.

~ Neve Grace Coleman, age 9, homeschooled

***

And, there’s this one which made me smile: In response to the prompt: “The worst teacher you’ve ever had” (hopefully I won’t be on that list!):

For a challenging subject, he was the last teacher we wanted. We actually needed someone to show us how to strategically find x and solve y, not one who failed while trying to disprove age old theorems and claimed to have seen ghosts in the school hallways in broad daylight and tried to pull off a Matilda to move a marker with his mind. clearly, he was deprived of attention as a child, at least that’s what we thought.

~ Ranuli Palipane, age 17, Musaeus College

***


Note: if you attended one of the workshops and would like to send me some pieces you wrote there for publication on my blog, do let me know! You can email them via the Contact form.

Links:

British Council in Colombo
British Council Literature website in the UK
British Council Literature on Twitter

The Galle Literary Festival on Facebook
The Galle Literary Festival on Twitter