THE UNENDURABLE, Part Two

It’s just over a month since I wrote The Unendurable, a month since I had my operation to remove a large ovarian cyst, and two weeks since I created my fundraiser. The response to the fundraiser has been utterly overwhelming, so too all the messages and notes sent to me, many from dear friends, many from people I’ve never met at all. I haven’t managed to thank everyone. I’m sorry about this, know that you are all in my heart and that I’m so very, very grateful.

Every day of these past two weeks I’ve wanted to write more, to express something that perhaps is inexpressible, a healing process I had no expectation of. Perhaps this process began when the pain started, last March.

I’ve not been able to write about any of this, because the operation triggered yet another severe ME/CFS “crash”. I was told recovery would be two weeks, but no matter how long I rest, tremendous exhaustion isn’t alleviated. Even my sutures aren’t healing well (I’ve just finished a course of antibiotics). Other ME/CFS symptoms are flaring up- swollen glands, feeling as if I’m coming down with something. There are precious few moments available to do something unrelated to my physical state–from resting or taking my numerous pain medications and supplements, doing my physiotherapy movements, or going to medical appointments and therapeutic sessions.

Most of these appointments I would not have been able to do without the support from the fundraiser, and I’ll write a little about these first.

I had a consultation with a private surgeon. Not an uplifting experience. The situation in my back, at least according to the MRI done last September, is rather worse than was initially implied. It’s not just a disc bulge but “an extruded prolapse on the back of a broad based prolapse eccentric to the left.”  This pinches a nerve root, hence all the pain I’m in.

He listed my options (in his opinion):

– do nothing, many such issues resolve in a year, but my year is pretty much up.
– have another nerve root block, but since the first one only helped about 15%, he didn’t think more would help.
– have the operation, a microdiscectomy. He outlined all the (frightening) risks, and the post-op protocol – 5-6 weeks of no sitting, perhaps propped up in bed with pillows. This alone terrified me, given how long it’s taking me to recover from a relatively minor operation.

The surgeon told me he typically gives an 80 to 85 % chance of surgery benefitting my kind of symptoms, but due to my health profile, it would be 70 – 80%. My gut instinct is it could be even lower.

I was quite depressed after this consultation. Thankfully, just afterwards, I had a face-face consultation with the lovely NHS physiotherapist I mentioned in the fundraiser, the one who’d talked to me about central sensitization, where the brain sends out ‘this is dangerous pain’ signals when perhaps the pain is not as bad as that (and just to be clear, the pain I’m feeling is as bad cuaas I feel it, but it’s possible, due to the trauma of the past year and ME/CFS, my pain threshold is lower than it might be). He was lovely, and suggested I at least try another approach, a kind of CBT of movement of the body, very, very gently teaching the body-mind to try movements I’ve so far freaked out about – and not done if at all possible – for fear of them causing me pain. It was a relief to at least consider something else before going for surgery, and would take time, weeks, months.

The next day my throat lump was scanned. It’s a benign thyroid nodule, nothing to worry about. A huge relief (unfortunately the drive there and back, about an hour and a half in total, caused excruciating sciatic pain for the rest of the day/night. Car seats seem designed to do this!).

In the meantime, thanks again to the generosity of everyone donating to the fundraiser, I’ve been doing sessions of acupuncture with Nik Tilling who specialises in pain. Initially he treated the ‘reason’ for my pain, the disc prolapse, but then he worked on settling my nervous system (in constant ‘fight/flight’), and, well, my whole being. Nik is one of the most empathetic people I’ve ever met, sessions are closer to therapy/healing sessions.

I’m seeing a cranial osteopath and she too is focussing on settling my nervous system, and healing the damage done by the operation, and misalignments of my spine/sacrum. I’ve had one clinical massage session with another specialist in this area and will be having one this coming week.

Also, my dear partner has been doing healing bodywork on me, something I’ve not been comfortable with in the past. Partly because it is his ‘job’ and I felt it would just take too much from him to be working on me too, in particular at this time, when his own work situation due to the pandemic and Brexit has been horribly stressful, uncertain and worrying. 

With all this, the pain is still there–last night it was as if my calf was being squeezed in a vice and as I write this a burning snake of pain wraps itself around my thigh–but something else quite profound is shifting in me.

And it is this I really wanted to write about.

As I said in that fundraiser, “To be asking for help, for funds, for myself, feels absolutely the opposite of what I ‘should’ be doing, when I know there is so much suffering that I could assist in alleviating. The truth is I’ve never found it easy to ask for help, of any kind.”

Well, in addition to the fundraiser, I steeled myself to make a post on a local neighbourhood website to see if anyone might be willing to ferry me to and from some of these appointments, in exchange for writing help. I didn’t expect any response, but over a dozen people volunteered, and most don’t want anything in exchange. Amazing.

And the other night I spoke to someone who knows physical pain intimately, an animal rescuer amongst other things. A very dear friend (who also truly knows pain) put me in touch with her. In addition to sharing what has helped her, this lovely woman invites me to her house in Ojai, California (one of my favourite places in the world ) where I can soak in her warm pool and learn from her experience. A total stranger, inviting me to her home. What a gift! The dear friend who introduced us has also invited me to her home in the States, in a town that abounds with amazing practitioners and another friend to her home in Austria where she would give me sessions…

So, how to fully express what it means to me to be receiving such incredible generosity? Of course I’m grateful, but it’s more than that. Something seems to be working through layers of past trauma, breaking down an unhealthy idea of how I should ‘be’ in the world. It’s kind of crisis of identity. I’ve had ME/CFS for 25 years but I’ve tried to pretend it wasn’t there and pushed myself to continue to be an independent, ‘strong’, do-it-alone sort of person. And now I can’t be this person anymore. The pain has forced me to surrender, to let go of who I thought I was, who I thought I should be. And in letting go, support and kindness and love just keeps flowing towards me.

I’ve often thought of my mother in the past while. Yes, wanting her to be alive, so I could hear her voice, but also because of who she was, how she behaved in the world. Such an extraordinary person. Someone who also believed in being independent, in not needing help. Someone who helped others, not the other way around. She was a powerhouse of a woman – a force of nature, people said – until her 70s, when things started to crumble, when her way of dealing with life was no longer possible (make a sculpture, build a house, organise a community centre, dig a garden). She was suffering from a variety of debilitating issues (including pain) yet spent the last years of her life alone, lonely, isolated, because she could not bear to be seen as vulnerable. She pushed people away – even dear friends, and family. She once told me she’d wake up in the night weeping.

I could so easily have walked the same path, ended up alone and isolated and afraid.

After one of my healing sessions I had such a powerful wave of loneliness wash through me. Not that I don’t know loneliness – chronic illness and chronic pain are lonely conditions—but this felt deeper, stronger, a loneliness I’ve probably had most of my life, ever since the car accident that killed my father when I was seven. Or earlier. Perhaps, even it’s my mother’s loneliness, or further back, her mother or her mother’s mother, or even further back. This wave of loneliness seemed almost touchable, so that I could truly acknowledge it. And in other sessions, acupuncture, for example, something similar is happening around feeling joy (I can hardly remember when I last felt joy), seeing if I can allow an opening for this, and for transformation in all areas of my being.

So, while I’m still in pain 24/7, still crying with it sometimes, I sense a possibility. I can’t see how it will look yet, but it’s brighter than where I’ve come from.

I have you to thank for this, all of you who manage to read these long posts; all of you who have reached out to me in so many ways. Thank you.

What is next? The NHS has put me forward for another kind of injection, ‘radiofrequency denervation‘ (essentially cauterizing the nerve). I’m a bit nervous about this and the surgeon didn’t even mention it, but it’s not till May so I have time to consider. [Update: I was given incorrect information – it’s just another kind of steroid injection.] I have enough in the fundraiser to explore not only acupuncture, cranial osteopathy and clinical massage but other modalities for several weeks. I’d so love to take up the kind invitations to stay with people in a healing environment–I’ve often said if I could wave a magic wand for myself it would be to be in nature near warm water–but I need to be much stronger to make any kind of journey. I wonder if this will ever be possible, given how unwell I’ve been for so long, over and above the pain. I’ve known of some approaches that have worked wonders for others with ME/CFS, intravenous glutathione and vitamin C or a PEMF mat – pulsed electromagnetic field therapy – for example (some studies used PEMF for Long Covid and chronic pain). And these would eat up my entire fund and more, so in the meantime I will try to keep myself open for ‘what wants to happen’ – an approach I use in writing, actually!

[Update: a friend just read this blog and said that in my wording of the very last sentence she heard the old voice of scarcity and limitation, that I shouldn’t assume the support I’ve been given would be over… so once I feel more sure about what might help, perhaps I’ll do a new fundraiser –argh, even writing this feels once again SO uncomfortable!]

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

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

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