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

 

A new career in Greek Reality TV?

In my last blog, A Cretan Story, I mentioned the Greek TV show “Pame Paketo” (Πάμε Πακέτο), who I’d contacted as they help connect one with ‘lost’ people from the past. I’d emailed them in early September about wanting to find Manolis Anitsakis or someone in his family. Manolis was the man who took care of me and my brother while my mother was in hospital after the car accident, the man who’d found us an apartment to live in, the man who’d bought me a puppy and a hedgehog and who fed me kadaifi and baklava in his family’s café. Within a few days Annita, one of the Pame Paketo team, replied to me via Facebook and said they would like to do a story, which meant they found someone. I did not know who. Over the next days I chatted at length to Annita. She wanted to know everything I remembered, asked me if I’d be willing to go to Athens in a couple of weeks to record the show. The thought overwhelmed me, as this would be just a few days before my planned-for trip to Chania. David was away, I couldn’t find a cat sitter, my health was particularly low. And a reality TV show? It just didn’t seem the kind of experience I was destined for. But I said yes, of course, thinking what HAD I got myself into.

Well, this for starters…


My hotel was by the sea, with a spa and a pool and a great breakfast buffet. I slept and swam and let the sauna get me into some kind of presentable shape for filming the following evening.

At the Pame Paketo studios, my first hours were spent sequestered away in a small room with my translator George Fassoulakis. The other ‘story’ on the show was being filmed. I wasn’t to leave the room, as whoever they’d found was also in the building, and we were not to cross paths until the show.  I was brought a substantial salad and coffee and endless sweet cakes. George and I chatted. I learned he spoke 5 languages and translated for the UN in Brussels. At some point I was ushered into hair and make up looking like one person, and then ushered back to the small room looking like another. Finally we were ‘on’…

Everything is in Greek (other than when I speak) but if you listen closely you can hear George doing simultaneous translation – I now have a profound appreciation of this skill.

As is revealed to me on the show, Manolis died from cancer in the 70’s, only ten years after my father died (more about this here). Manolis did not marry, but he had two sisters, who’d also died. But the sisters each had one child, Stella and Mihalis. This is surprise ‘meet’ on the show, Manolis’ niece and nephew. In the “Paketo” (packet – the enormous white box) that Stella opens is the obituary of my father written by Manolis, and a gift I’d chosen for Manolis or whoever Pame Paketo would find: a pair of silver cufflinks my mother made some years ago. Neither Stella nor Mihalis knew who they would meet, only that it was someone asking about their uncle Manolis.

As they read the obituary, they began to remember. Stella remembered a dinner with my parents; she remembered that Manolis was distressed he had to leave Chania for a few days, and so she took his place at my mother’s bedside in the hospital. I did not get to meet Manolis, but to meet Stella and Mihalis, who’d been there then, who were a part of my ‘lost’ history – well, it felt like a another strand woven in the net beneath me that has been forming ever since my visits to Chania, a net that will catch me if I ever fell. I have realised that most of my life I have been floating in space without a way to get back to the mother-ship, without anything to catch me if I fell to earth, but now there is a way back  –  tentative and delicate, but definitely there.

And then it was a wrap and everyone was pressed into the night. Stella and Mihalis and I promised to meet again in Chania, which did, a week later.

Manolis Anitsakis

The show had a section of me being shown photographs of Manolis that I’d never seen, it was very moving for me.

Manolis Anitsakis (the woman second from left was Manolis’s first cousin, Marika Vlassopoulou, who was a writer and general director of broadcasting)

I was flown back home the next day, but not before I managed to have lunch with my ex step-aunt for the first time in over forty years, and then coffee with my ex step-father, also for the first time in over forty years. He came to Athens airport to meet me, and we sat perched on uncomfortable chairs, while around us travellers dragged their hand luggage to departure gates or stared glassy-eyed at flight information displays. My step-father and I caught up as best we could given the circumstances. I almost missed my flight.

The whole experience felt like I’d slipped briefly into another dimension, one which still exists out there,  just waiting for me to return. And I can feel those strands, connecting me to the mother-ship. Thank you Pame Paketo for your part in this.

I’m still looking for three of the people who were in the car accident: an American couple, and a Greek man, whose first name I believe was Costas. I’d also like to meet Mihalis, who played with my brother. A son of a fisherman. Mihalis was about eighteen then (1968/9), so in his mid sixties now. Perhaps another show…

A Cretan Story

Did you have a good holiday? a friend asked after I returned from a 16-day trip to Chania in Crete. I paused, unsure how to answer. Yes, I spent a couple of hours on a beach, soaking up the sun. Yes I drank wine watching the sun turn the sea into colours I couldn’t name. Yes, I ate lingering meals in bustling tavernas, but ‘holiday’ didn’t feel like the right word.

The trip was, in fact, part funded by an Arts Council travel grant to work on a new project, but I can’t say I did much of that either. I did talk all things writing with my travelling partner, author Robin McLean. I kept a diary. But actually sit down and work on a project? No. My days were so intense and full at times I felt if I had one more emotionally affecting experience or interaction I might simply explode onto the Venetian cobblestones of Chania’s old town.

You were on a pilgrimage, my friend said after listening to my attempts to answer her question. A good word. I had in fact returned to the scene of events that changed the course of my family’s life.

I was born in South Africa in the early 60s. My mother, Berrell Jensen, was a famous artist and sculptor, and my father, Tony Jensen, was studying for his PhD and embarking on his own career as an artist. Apartheid was at its height. When I was seven, my parents decided to immigrate to Europe.

In the autumn of 1968, while my father was finishing up selling our house in Johannesburg, my mother and I took my brother to boarding school in Scotland and then travelled through Europe to Chania, in western Crete. My mother was interested in Classical sculpture, and Chania was known for its community of artists and bohemians.

Photo from 1968/9

Thanks to Manolis Anitsakis, a Cretan man who befriended us, we settled in quickly. Our small apartment was on the harbour, an apartment Alan Bates apparently lived in during the filming of Zorba the Greek. I remember burly men on the port, cleaning spiny black sea urchins and holding them out to me to wrinkle my nose at. I remember seeing an elderly woman dressed in black, scars ripped across her face (Cretans were brutally treated during the Nazi occupation).

By mid December my father had completed what he needed to do in South Africa. He picked up my brother at the end of the school term and they arrived in Chania to join me and my mother. On the 5th of January 1969, to celebrate my brother’s 10th birthday, we drove to a taverna just outside of Chania. With us in our car was a local Greek man and an American couple my parents had met. Manolis drove separately to meet us at the taverna. I remember bouzouki music and dancing and plate smashing and laughter. I danced with Manolis: he was not tall, I felt like a grown up. The night seemed endless and wild and wonderful.

Chania in 1968/9

During the drive home, in the early hours of January 6th, my father lost control of the car, swerved off the road and crashed into a tree. My brother and the American man pulled me out of the car, telling me not to look back. I saw blood on the American man’s arm as he held me. The full moon shone down. I heard the sound of crickets, the hiss of the car’s engine.

In my ears I could still hear the song everyone had been singing before we crashed: Σιγά σιγά. Slowly, slowly.

What I remember next was Manolis with me at the hospital, asking me if I was hurting as he walked me down some stairs.

My father died in the accident from head trauma, although I only found this out later. My brother and I were uninjured apart from bruises. The American man’s girlfriend had a broken leg and collarbone. My mother had chipped vertebrae. I don’t know what happened to the Greek man who was in the car with us.

Photo from 1969

My brother and I lived with Manolis and his family. When my mother was released from the hospital, she told me my father had died. Everyone in the house was wailing. I was not even sure I was sad. I did not know what I was feeling. I felt nothing. I rubbed my eyes and made noises as if I too were weeping, but I was not. I wanted everyone else’s weeping to stop.

I am sure as I stood there that terrible night trying to look back at the car smashed into the tree, something in me closed down, and I became disconnected from a deep part of myself.

Well, the story is a long one. But we ended up living in Chania for nearly a year, with trips back and forth to South Africa. My memories from that time are confused. We went on to live in Athens for a few years, before moving to England when I was twelve.

Although I went on to study Ancient Greek and Classical history and culture at university, and although I made two ‘holiday’ trips to mainland Greece, I did not return to Crete, I did not contact anyone from my past (including my Athenian ex-step father). I did not have their phone numbers or addresses.  I never knew what happened to the American couple. My mother never wanted to talk about what happened in Chania or her second marriage. She blamed herself for the car accident, saying she should have been the one driving as my father had bad “hand-eye coordination” (my mother was in fact a skilled driver, having learned from a man who raced cars).

Last year I returned to Chania for the first time since 1969. I’d booked just two and a half days, primarily to spread my mother’s ashes in the sea. I knew she loved the Mediterranean. I did not think I would need to spend longer. I might try to find out where my father was buried, perhaps. What else was there to do? I’d spend a week ‘holidaying’ in the Peleponnese instead.

The moment I stepped onto the streets of Chania it became clear I needed to find out everything, explore everything. In the short time I had I did what I could to re-trace steps I’d taken as a child. I wanted to find out what happened to Manolis, I wanted to find people who might remember us. I wanted to stand in the exact spot the car crashed. I wanted to know the names of the American couple and the Greek man who’d been in the car.

I did manage to find my father’s grave: he is in Agios Loukas cemetery, his bones in a pillowcase in another man’s grave.

Sandra JensenFinding the grave changed me. As I stood there, white marble shimmering everywhere, the smell of beeswax candles and the red Bougainvillea growing near, my father came into focus. For the first time in my life I felt he actually existed. Before this moment he’d been a person in story, not even my own story.

Also, for the first time I felt how tragic it was for him to have lost his life so young. He was only 33.

I have virtually no memories of him.

I tried to find Manolis, or at least his family, to thank him for taking such good care of us. Two and a half days was not enough time. Several people said I should contact the Greek TV show “Pame Paketo” (Πάμε Πακέτο), as they help connect one with ‘lost’ people from the past. I did contact them on return home, and in mid-September this year was flown to Athens to record a section for their show to discover who they’d found. The show will be aired on November 1st at 22:00 EEST (also archived on YouTube, I’ll post a link in a new blog when its up! – Edit, 5th November: here it is – the YouTube is edited, full version of the show is here).

In Chania, when I showed people – anyone, random shop owners, policemen, waiters – photographs taken by mother, their eyes would well up, seeing how their town used to look. And when I told them story of my childhood, their eyes would well up again. I was so moved by this response, their concern, their questions. It was as if what I told them had happened to someone in their own family.

So, of course, I had to return to Chania. I’d been considering writing a linked story cycle called ‘Labyrinth’, involving myth, prose poetry, fictionalised memoir – a literary attempt to “story,” or make sense of the often dreadful and meaningless events of existence, reconfiguring them as something more real and transformative. I applied for a travel grant, received one, and so I arrived in late October.

Obituary of my father from 1969, translation below

Again, I walked the streets with the old photographs in my bag (and cat food for the strays), and I’d talk to anyone willing to talk back. No one refused, in fact quite the opposite. My experience of last year was only a dip in the water compared to what happened this time. People pored over the obituary Manolis had written in a local newspaper which I’d recently found. They looked at the photographs, they wanted the photographs. We met for coffee, for wine, for more talking.

I continued my ‘research’. I did not find the names of the others in the car accident – hospital records are lost. A lawyer is looking into court records, but I have not heard back. I managed to walk up the stairs of the apartment where we used to live, but got no further. It’s been turned into small hotel and there was no one there to show me the rooms. I did not find the spot where the accident happened. I did not find Mihalis, the son of a fisherman who used to play with my brother.

Sandra JensenBut as a Greek man I met said to me: You may not find everything from your past story, but you will find new things. You will make new beginnings. You will start a new story.

So. Holiday. Pilgrimage. A step into the labyrinth of my past, reconnecting with the self that I lost on that Cretan road in January of 1969. The beginning of a new story.

And although I will continue to develop the writing project mentioned above, I think I’ll begin a novel. The Greek novel, is how I’m referring to it.

Robin McLean and I are considering running a writing workshop in Chania next October, so I am returning there again. How can I not? Chania can be your home town, someone said to me when I’d told her I never felt I had a home. I do now.

~~~

English translation of the obituary of my father, written by Manolis Anitsakis (translation and notes by Nicolas Sampson):

 It’s been one month since the tragic moment a ‘foreigner’ passed away in this land.

We know a few things about this foreigner. He was a psychology professor and an amazing artist from Johannesburg, South Africa.

And this ‘foreigner,’ he made us love him so much in the short time we knew him. It doesn’t take long to evaluate the worth of a person, and Tony Jensen was an outstanding one. [Here the author uses the term ‘anthropos,’ playing with the double meaning of ‘person’ and an ‘outstanding human individual’.]

Earnest, dignified, modest, leventis [a ‘fine man’ — this is one of the best compliments a Cretan can offer] and in control. He never bragged, even though he had every reason to boast on account of his superb education and his brilliant career.

He loved life and he loved perhaps even more to learn things. He loved the world and its people. He loved Crete, too, turning it into his chosen spot for his vacation, but Crete seems to have loved him in turn, perhaps more so, keeping the 37-year-old forever with her.

We will be denied from now on his noble figure and his leventi-style poise as he made his way down the Chania streets alongside his wife and his two children, whom he adored.

Yet we still see him in our minds and will never forget the beauty of his soul, and wish him with all our heart that the soil that covers him, the Cretan soil that now keeps him, to be light and gentle on him.

We offer his venerable mother and his beloved wife and children our warmest [deepest] condolences.
Anton Jensen with Sandra Jensen

On Loneliness

You know you are in trouble when you find yourself welling up after a friendly encounter with the phlebotomist.

She inserted the needle, asked me how my weekend had gone. I was lost for words – I couldn’t even remember when the weekend was let alone how it had gone. She made a commiserating sound, a little ‘Ah’. And then, don’t ask me how, we found ourselves talking about how we hated cleaning. I told her of a long-ago job as a house-cleaner, how I was very good at making a house look tidy, books patted into place, vases placed just so, a chair shifted slightly… but dust and grime remained in great swathes if you looked close enough. ‘So,’ she said, ‘You were one of those cleaners,’ and we laughed.

I left the office, and that’s when my eyes welled up. It had been days since I had a conversation with someone that wasn’t via text or Skype or cell phone.

I’ve lived a remarkably solitary life for the past nine years. Almost an extended silent retreat, but one I didn’t consciously plan.

For some of those years my partner and I lived in the countryside and, when he was away for work (which he is for 4-6 months of the year) two weeks or more could go by where the only direct contact I had with another person was the postman. We are now living in a town, on a busy street lined with little shops, but nevertheless when my partner is away, other than Skype and phone calls with friends in other countries, I have very little meaningful interaction with others.

A number of things contributed to this situation – travelling the world and living in several different countries in the past 15 years – wonderful, but not conducive to setting down roots or building a local community. Not having children. My 25+ year long chronic illness (M.E./ CFIDS/ late-stage Lyme type). In fact my health has deteriorated to the point where it’s a rare day I can go out and be engaged in activities with other people.

And, there is the fact I’m a writer, a necessarily solitary occupation for the most part.

In the first years I tried to use the time alone to my advantage. Dozens of short stories fled my fingertips, I began my novel. I developed my online community. I even started a Facebook Bosnian stray dog and cat rescue group. I wasn’t lonely. It wasn’t a problem. Perhaps I had a natural inclination towards solitude: my mother used to tell me that as a child she’d often find me in my room happily ‘contemplating my navel’. I’ve often described myself as an “anti-social social” person.

But I have become increasingly aware that I am not just frequently alone, I am lonely. Perhaps I have always been lonely, but due to the ‘well-developed coping mechanisms’ a therapist once told me I had, I have avoided this realisation.

When my mother died two years ago, sadness was so all-encompassing it was almost a friend. Over time the sadness receded, always there yes, but in the background, no longer filling my every moment.

I focused on finishing my novel. I finished my novel. What was I left with? Myself, shorn thin of coping mechanisms.

Writing can be a lonely business. Having a chronic illness is a lonely business, especially an ‘invisible’ one. Life is a lonely business. Dying is certainly a lonely business. And yet, and yet. We are together in our alone-ness and we are surely together in our desire to connect deeply with others, to feel ‘met’ and seen and understood.

So, what to do? Perhaps it begins by acknowledging what is. I started writing this blog some weeks ago, and since then there has been a delicate, tentative shift, something I can’t quite put my finger on, but it feels like a beginning. Sometimes simply letting others know how I am feeling, rather than just soldiering on, changes things. Letting people see the dust hiding behind the furniture, letting them know that while things may look OK on the surface, they are not so OK underneath. And in doing so, in taking this risk, I feel not quite so alone.

There are many articles on the “epidemic” of loneliness, so in fact I am not alone in my experience.

Here, for example, is an interview with John Cacioppo, director of the University of Chicago’s Center for Cognitive and Social Neuroscience: Chronic Loneliness Is a Modern-Day Epidemic

And another in the New York Times, which is mostly about the loneliness that affects the elderly: Researchers Confront an Epidemic of Loneliness which quotes Emily Dickinson on loneliness: “the Horror not to be surveyed.”

Things We Don’t Want To Talk About

Things We Don't Want To Talk About - Menopause

I’m sure there are many things we don’t want to talk about. But the ‘thing’ I’m referring to is menopause. It’s not exactly a sexy subject. More often than not, it’s referred to as a kind of joke (Google ‘Menopause jokes’), oh the horror of a menopausal woman. And those of us who are going through it often try to pretend it’s not really happening, an embarrassed flap of hands when a hot flash occurs, Let’s move on. I don’t want to be a bother, I don’t want to be considered ‘past it’. Old. Et cetera.

Essentially there is a culture of silence regarding menopause: a report by the British Menopause Society found that half the women going through menopause haven’t visited a doctor, as many are ‘too embarrassed’. And yet the symptoms can, literally be catastrophic. I know, because they were for me. I’m writing this blog in the hopes it’s a small step to help break this silence.

I actually started menopause about 6 years ago. I experienced mild hot flashes (or ‘flushes’) – quite pleasant for someone who is usually cold, and I put on weight, which was a blessing as I’m underweight. The most debilitating symptom was breast pain, so extreme I had difficulty sleeping. I tried bio-identical progesterone bought from the USA, but it didn’t make any difference, and then symptoms slowly improved and I’d only have the occasional, mild hot flash.

About a year and a half ago, the hot flashes began to increase in number and intensity. At the time I was working with a herbalist to treat my 22 year-long chronic immune system dysfunction (possibly as a result of contracting South African Tick Bite fever). We were not sure in fact if the hot flashes were viral in nature or hormonal, as they were not responding to herbs that commonly help. I was also working with my GP and he was taking a slew of tests. I saw an infectious diseases specialist, an ENT specialist. No tests showed anything wrong. I asked about hormones, and he told me blood tests would just show I am post-menopausal.

By March of 2016, my symptoms had rendered me almost completely housebound. I’d have 8 – 14 hot flashes a day, a few at night. They did not last more than a few minutes, but for those minutes I was incapable of doing anything at all. Generally I’d have to lie down. Hot flashes were not just ‘sweats’, they were like having sudden onset jet lag, being dunked in far too hot bath and having a panic attack (racing heart rate, dizzy, pressure in my abdomen) — all at once. Sometimes I couldn’t even talk, or open my eyes. In between hot flashes I was OK. I’d begin to do a little work on my computer, and then, wham, another one would hit and I’d have to lie down on my office floor. Or I’d think , it would be nice to go out for a walk, and ten minutes into the walk, I’d have to hunker down on the sidewalk until the flash was over. I felt ambushed by my body, unable to function for any length of time.

I stopped going out. I stopped exercising. I got very depressed. I didn’t know what was going on. I tried other herbs. I tried cold packs. I tried to ‘think’ myself cool. I did deep breathing exercises. The hot flashes were worse after eating and so I thought perhaps I had histamine intolerance, and I radically changed my diet. I did experience an initial improvement, I think simply because I was eating better. And then the flashes just got worse, and worse.

I thought about trying bio-identical hormones again. I found a private doctor who would prescribe these. I mentioned it to my GP and he agreed it might be worth a shot. Neither of us mentioned “HRT”. I didn’t know much about this other than the muffled but clanging alarm bells. Didn’t it increase the risk of cancer? Although I had not researched the facts, it seemed clear HRT was NOT something to even consider. And clearly my GP thought the same thing.

So, in February this year, I booked an (expensive) appointment with the private doctor. Blood tests showed I had rock bottom levels of oestrogen, progesterone, testosterone and DHEA. I had expected the doctor to prescribe perhaps one or two transdermal creams, instead I she sent me away with 2 transdermal gels (testosterone and oestrogen), a vaginal suppository of estradiol and a micronized progesterone pill to take at night. I felt a little overwhelmed.

I felt even more overwhelmed when, after doing the research I should have done before making the appointment, I discovered bio-identical (or ‘body-identical’’ hormone therapy (BHRT) is actually not that different to taking HRT. There are still risks associated. I worried: was I doing a terrible thing to myself? I worried even more when after two weeks things just seemed to be getting worse. And then at the three-week mark, there was a sudden change. Instead of 14 hot flashes, I had 3 or 4. At the four-week mark, I had none.

Was I celebrating? Yes I was. And, what if I’d received treatment last March?

In the process of getting my blood tests I discovered there was a nurse at my GP practice who specialised in menopausal issues. The female NHS doctor who ordered the blood tests the private doctor needed – my regular GP was not available – who told me this, also told me in the past HRT was overprescribed, but now, due to the cancer scares, it’s under-prescribed. She told me there are now different kinds of HRT available on the NHS, better tolerated kinds. She told me that in fact in addition to alleviating symptoms, there are health benefits to HRT: it can increase bone density and some say it can protect one from  Alzheimer’s.

I had already booked – and paid for – my appointment with the private doctor so I didn’t pursue getting treated at my GP practice.

Actually, once my catastrophic symptoms stopped, the first thing I felt was rage. Rage that I had not been given adequate information or care by my GP. I changed practices, and now have a female GP on the NHS who is prescribing BHRT (all available on the NHS…) and who is monitoring my progress and symptoms, so I don’t need to fork out buckets of money to a private doctor. I have also learned that starting BHRT or HRT earlier rather than later is safer, and increases the benefits to bone-density. It might have been better if I had started a year ago. Or even 6 years ago.

Perhaps if I had been more vocal about what was going on (I thought I had been), perhaps if I didn’t ‘present’ with a complex case, perhaps then my now ex-GP would have said, Have you thought of HRT? and talked me through the options. I don’t know. What I do know is that what I went through was entirely preventable, and that after a year of near total inactivity, I’m still very debilitated.

If you are a woman ‘of a certain age’ please don’t suffer in silence. If you are a man (or woman) who loves a woman ‘of a certain age’, help her find support. This is an excellent online forum on menopause and all things HRT / BHRT: Menopause Matters.

Losing My Mother

Berrell Jensen as a young woman, South Africa

Berrell Jensen as a young woman, South Africa

My mother, Berrell Jensen, died on the 25th of July at Mercy University Hospital, Cork, Ireland. Nine weeks ago, today. She was 83. Losing her has been profoundly devastating for me, perhaps all the more because we had a complicated, often estranged relationship.

In the last years of my mother’s life I would sometimes wonder how I would feel when she had gone. I imagined relief, mostly. She was physically suffering and lived reclusively. I felt, for the most part, burdened by these facts. Although I admired and appreciated the extraordinary things she’d done in her life, I could not locate feelings of love for her.

Perhaps I ‘lost’ her when I closed my heart to her, aged 13. Perhaps it began earlier. At critical times in my life I felt my mother failed, betrayed or abandoned me. Although being a rebel and a feminist, and a role model for many people, she did not prepare me for the challenges of becoming a woman. When my first period came, I thought I was dying. I waited for her to come and ‘make it all better’ but she did not and I washed my sheets in secret, and from this moment viscerally felt myself shut her out. But the seeds of this process started earlier, when she unwittingly – or uncarefully – exposed me to her sexual life and to her brief but violent second marriage. The list goes on. Her inability to help me through depression and bulimia, although in her work as a community centre director, she was instrumental in assisting others who had mental illness; her subtle chauvinism in her behaviour towards me; her endless and lengthy advice on what I should be doing with my life, without asking me what I thought; her rage when I wrote to her about a deeply transformative experience I had which concerned my father’s death in a family car accident.

Berrell Jensen Netherlands Bank commission, Johannesburg 1962

Myself and my mother, as she worked on one of her copper ‘wallpaper’ commissions for the Netherlands Bank, Johannesburg 1962

The truth is my mother felt guilty for all these things. She felt she’d neglected me when she had had to work. She believed my father’s death was her fault: she should have driven, he had drunk too much. She blamed herself for my bulimia, and even, I suspect, for my decades long chronic illness. However she lacked the skills to talk to me – to anyone perhaps – about her feelings. In my 20s, during the worst stages of my bulimia, she wrote to me and said I needed to pull my socks up and get on with things, that I could not blame her or my father’s death for what was happening to me. Words that can only have been written because of her feelings of helplessness and remorse. I know this now, I have known it for some time. I went on to work on my issues with therapists and healers and spiritual teachers, and I learned so much: how to truly feel what was going on for me rather than rationalise it, how to talk honestly and directly with others. I learned how to take responsibility for my life.

But at no point did I choose to use what I learned when I was with my mother. I remained resolute in my early decision to exclude her from anything that was tender or vulnerable. Even in the few years I lived in the same country as her, I only made sparing visits, focussing on accomplishing any ‘jobs’ needed around the house. I gave her advice on nutrition, and made her monthly orders for supplements. I helped her out with her computer.

I would cry when I left her, acutely feeling her loneliness. Nevertheless, I did not choose to spend Christmas with her, which she spent alone for decades. She said she hated Christmas, and preferred not to do anything, and I pretended I believed her. I did not choose to visit her on her birthday, not even her 80th. Her birthdays were also generally spent alone.

I would cry when I left her, acutely feeling her loneliness… Now that she is gone, I understand this: we were close. So very close. I felt everything that was going on for her, and she me. Perhaps in this one way it is understandable that I found it so hard to spend time with her. It was too painful. She did tell me once, that she woke up in the night weeping.

Berrell Jensen, publicity shot, Santam Bank, Johannesburg, 1966

Berrell Jensen, publicity shot, Santam Bank, Johannesburg, 1966

My mother had much to weep about. She might have been one of South Africa’s most famous artists in the 50s, 60s and early 70s; she might have marched with women in the Black Sash against apartheid, she might have changed people’s lives with her social work in Belfast and London, but she was also a child of an alcoholic mother and she experienced her father as emotionally distant, a man who thought women should be wives and mothers, perhaps secretaries, but not activists or artists (she paid her own way through university in South Africa by driving a taxi). As a young child she was confined to her bed for a year due to meningitis. Also as a child, she was raped by a member of her family (now deceased), and fought off another rape as an adult. She dropped her aspirations to study for her Masters degree in order to support her family. She inadvertently witnessed one episode of her husband’s several affairs – this one with her best friend. She survived a horrific car accident that killed him, an accident that occurred the night of her son’s 11th birthday. She single-handedly raised her two children and supported her mother-in-law, often taking on work that was gruelling and very poorly paid. She lived frugally all her life and, in her last ten years, in difficult circumstances in a damp and isolated house.

She died in hospital, from kidney failure, lung congestion and heart-related complications. I was with her for most of the last two and a half days of her life, two and half days that changed everything I’d ever felt about her.

I arrived on a Wednesday evening, a late flight. The moment she saw me she tore off her oxygen mask and a monitoring device stuck to her forehead, and she opened her arms and said, “I just wanted to see you.”

The moment I saw her, my heart opened. The heart that had been shut for forty years.

Table glass covered, in copper, brass, enamel, created by Berrell Jensen

Table glass covered, in copper, brass, enamel, created by Berrell Jensen

During those short last days, we frequently gazed long into each other’s eyes. We talked little. Her mind had been failing and I don’t know what she was conscious of, but it seemed to me that she was in a state of grace, that the language spoken between us was deep and profound, there were no words needed. (She did once say loudly, “I love you my darling” – silencing a discussion of bodily ailments between two other patients in the emergency ward.)

She would smile if I smiled, but otherwise there was no need. We both felt our love for each other, of this I am certain. And I told her I loved her, often. Words I had never said before. She would nod, and smile, and I knew she was telling me the same thing.

On Saturday afternoon she started to fail rapidly, and the nurses and doctors made me leave the room while they ministered to her. I had only one wish at this point, which was that I would be with her when she died. I was not.

And so began the grief. I felt as if someone had taken a hacksaw to my chest. The pain was unbearable. Is still, when it visits. When a dear friend told me, It is unbearable, I knew she understood.

Pain made greater by remorse, by regret.

Totem, in bronze, Berrell Jensen

Totem, in bronze, Berrell Jensen

I regret not listening to the voice inside me that said, I should be there now, I should be there now, for the five days prior to my actual arrival before she died. I regret not listening to the intuition that told me, also five days prior, she would die on Saturday and so stopping the doctors from putting the feeding tube down her nose on Friday. I regret not removing a suction tube on Saturday morning from her other nostril, a tube that caused her so much discomfort. I regret the hours I did not spend at her bedside in the hospital. I regret the many things I did not tell her during the hours I did.

But these are small compared to my remorse for not overcoming my decades-long resistance to being with her, talking openly with her; my remorse for not spending time with her in her last years when she suffered so much and was so lonely; my regret for not doing the many things I could have done to make her life a little easier, a little less lonely. I needn’t have done anything drastic, but on my infrequent visits I could have sat quietly with her, asked her gentle questions. I could have given her the space to share with me, if she so chose. Or we could have just sat, and gazed out the window at the birds she loved.

Perhaps those two and a half days of precious connection have put into sharp focus what I have lost, what could have been, had I managed to set aside my list of accusations.

Commission for public building in Capetown, aluminium, by Berrell Jensen

Commission for public building in Capetown, aluminium, by Berrell Jensen

Many have said my mother was always a difficult woman, independent and stubborn, and so I should not blame myself for her situation. I have been told that had I taken more time to truly be with her, it probably would not have made a difference. Perhaps so. But knowing these things does not change how I am feeling.

I have been told I shouldn’t be feeling regret and remorse. For me I sense these feelings as a kind of teaching, a way to deeply remind me again and again to be truly present to what is, to live my life in such a way that I never again cut off emotionally as I did with my mother; to remind me to keep my heart open. I thought I was protecting myself from pain. I know the pain I feel now is all the greater because I closed myself to her.

There is more to write. The grief that we die at all. The incomprehensibility of this fact.

Berrell Jensen, late 60s or early 70s

Berrell Jensen, late 60s or early 70s

More mundanely, the catastrophe of what is expected of next-of-kin when someone dies. The amount of work involved is so contrary to what is really needed at such a time, work which brought me to my knees. The first thing one nurse said to me after my mother died, was: “You have to contact a funeral director.” I could barely breathe, let alone begin to know the steps involved in just this one thing, let alone navigate what was required for probate (the meaning of which I only learned after my mother died).

I am sharing my experiences and process (if you are still with me!) to encourage others not to make the mistakes I made, to be prepared, if just a little, for the death of someone close. To prepare for your own death.

I ask you now: think of those you love, are close to – in spite of difficult or complicated or estranged relationships. Is there anything you would regret not doing, not saying, should they die? Do it now. Do not wait. Do it now. It might feel too uncomfortable, it might feel it would cost you too much – financially and emotionally, it might feel as if it would take too much time, but please, do it now.

And, if you have not yet had to handle the post-death affairs of someone, find a friend who has and ask them if they might be on stand-by should and when the time arises for you to do it.

"Biosphere" Approximately 1 1/2 feet in diameter, Berrell Jensen

“Biosphere” Approximately 1 1/2 feet in diameter, Berrell Jensen

Write a will. Make sure it’s legal and valid. Put it in a safe place, known to your nearest and dearest or lodged with your lawyer, along with a list of all your accounts and financial institutions and all important documents – passports, birth certificates and so on. There are a number of websites which outline what you should do to prepare for your death, things that will make it a great deal easier for whoever has to handle your affairs, for example: One Day, You’re Going to Die. Here’s How to Prepare for It

Last but not least, what do you do when a friend of yours is grieving? The thing most people seem to be concerned about is intruding. I am sure everyone is different, but for me, all expressions of concern or love were and are much appreciated. It means a lot to me, the hundreds of little notes, the ‘Likes’, I receive on my Facebook posts, the emails sent. I may not be able to reply, but believe me, I see and have read every one and have been comforted.

Other things to do if a friend is grieving: if you can, cook a meal and drop it by. Offer to clean the house, go shopping. Even just getting basic groceries seemed an impossible task sometimes. If you can, do these things without asking. Send cards, little silly gifts.

And ask questions about the person who died. Perhaps I am unusual in this, but I so desperately needed, still need, to talk about my mother. About everything – the horrors that happened at the hospital. Her last moments. My remorse for the things I didn’t do in her life.

I need to share these things over and over again, not to wallow, but to help the emotions flow through and out. To keep my heart open. I need to talk, to honour my mother’s memory, to tell the world how much I truly loved her, even though I only discovered this love in the two and a half days before she died.

Berrell Jensen

Note: I have been honouring my mother every Saturday on Facebook with posts about her artwork and her life. If you would like to see more please visit me there.

The Guardian Obituary: Berrell Jensen
Architectural Association Obituary is on this page, scroll a bit:
Architectural Association Obituary
Or as a PDF on the ART ARCHIVES – SOUTH AFRICA website which also has a listing of my mother’s exhibitions and other references: Berrell Jensen