UNSUBSCRIBED ‘ IN PAIN (2016)
As Psychotherapist and artist Pierre Mertens focusses on chronical pain and vunurable people. This is the text of one of his lectures.
I will tell my story from the three worlds in which I have spent my life.
I am a visual artist and therefore I illustrated this essay with images of artworks of colleagues and of myself.
I’m a psychotherapist, and that’s why I’m seeing pain as something that is both physical and psychological, always in interaction with each other.
I was also confronted with pain through the birth and death of my firstborn child.
How we think about the end of life and being born a lot of things run in parallel.
These three different worlds are connected through my life. This essay is a first attempt to connect them to the outside world as well.
I invite you to look with me at art and life, in bloom and decay, like roses.
Slide 2
When, in 1998, our centre for psychotherapy celebrated its 25th anniversary we chose ‘Scars’ as the theme of our symposium.
For the invitation, we used the second photo of series I made for an exhibition with children of the then heavily polluted and industrial Willebroek. The portraits were taken as lung radiographs an I placed against the cold blue tiles of the kitchen the castle.
Slide 3
The picture of the child with scars was printed on large scale, so that the invited person got literally the damaged child’s body in his hands. This was a statement in the post Dutroux year where child abuse was prominently actual. Scars because psychotherapy does not want to leave pain. Even when scars are the result of pain from long time ago.
Slide 4
Coetzee writes: We do not stare at scars, which are places where the soul has struggled to leave and been forced back, closed up, sewn in…
John Maxwell Coetzee (° 1940), Nobel Prize Literature 2003
Coetzee, in his novels, reveals no lonely pain.
Slide 5
In the previous Venice biennial, Belgian artist Berlinde De Bruyckere overwhelmed the entire art scene with a masterful aesthetic work ‘Cripplewood’. She showed immense images of mutilated fragile beings in which she enlarged the pain so that you could literally feel small and craw on it like an ant.
Slide 6
At the biennial this year, I was struck by the great painting of Safec Zec in the church of Dela Piéta. Virtuously painted on newspapers be rise the deaths to life of the thousands of asylum seekers in the Mediterranean.
Slide 7
This baroque church reminded me of the former commissioners who wanted to glorify the pain of martyrs by art, but also wanted to scare the sinners with the terrible punishments in hell.
Slide 8
They have been replaced by hail-white galleries and museums that have become plain servants of the big money.
It is significant that many artists today seek the pain to say something about our contemporary consumption driven society.
With all our reimbursed care, the Belgian suicide rate is one and a half times higher than the European average, because consuming alone does not make it happy.
Slide 9
Some artists even seek pain in their performance, such as Ambramovic, who makes physical and psychological pain the subject of her art and for example shatters her body with a rose.
‘Pain is nice’ said a 45-year-old client, whom I will call Anja now. In the same interview, she asked for euthanasia. Anja was hospitalised in psychiatry for an eating disorder when she was 17 year old. During a guided walk she was hit by truck and ran a skull fracture. She suffered a slight spasticity and a lot of physical pain.
Slide 10
A few years later, young Anja knew to convince a gynaecologist to remove her uterus without any medical indication. Neurosurgeons performed more than 10 surgeries in the last 3 years, but the pain remained.
After the death of her father who she cared for till is end the pain invalided her. Anja stopped working and longed for her own death. Thus she knocked on our door for euthanasia because of unbearable psychological suffering and physical pain.
Slide 11
I referred her to a colleague because, when she really demands euthanasia, I want to stay on the side of life as psychotherapist. I gave her also the alternative to talk to me about her pain and her death wish, but I would not help her die.
She chose to go to therapy with me, perhaps because I did not answered literally her demand and this was in contrast to the gynaecologist and surgeons. I just offered her to listen. She fell in love with me, an impossible and unacceptable love and this was also painful. But in her in love, I saw a sign of life and she did bit by bit her story.
Slide 12
Anja turned out to be sexually abused by her much older brother and when her mother caught her, she was blamed and stopped eating. Becoming a woman seemed to be dangerous. Later in life her fathers did also sexual proposals from her father.
There was never been spoken about all of this, not in psychiatry, not with the gynaecologist and certainly not by the surgeons.
People who suffer from chronic psychological or physical pain often relate to the health system such as outpatient asylum seekers. They hardly dare to tell their real story.
Slide 13
For them I developed the group therapy on PAIN, which combines
therapeutic proximity and unconditional recognition of pain that you normally only find in self-help groups. As therapist I try to remain with the pain of the participants, how unbearable it is. This recognition for their pain is needed to counter the long-standing resistance they built to the healthcare. Only then will there be space for self-reflection and change.
Slide 14
The three artists I mentioned are incorporation pain, injuries, violence and cruelty. Also this Jewish Boltanski who builds his entire oeuvre on the deaths of Auswitch.
All these works of art are made in respect and involvement with the subject. Therefore, they grab us at the throat and show them what the world usually keeps hidden.
Slide 15
The world turns its head (back) away and denies the pain. Those who are not involved run away and the person who suffers is usually left alone. Therefore, images like this are necessary. This iconic picture put an end to the years of war in Vietnam
Slide 16
Or this image of the mother’s love for Joshua, her untreated child with hydrocephalus in Manila. The child was born last year in an academic hospital through a caesarean section. A hospital where everything was available to help Joshua. But the surgeon sent the parents away without treatment. When I met Joshua, he had a head circumference of 95 cm. But the surgeon does not see that anymore.
Slide 17
Through my daughter Liesje, who was born with spina bifida and hydrocephalus I have been faced with these handicaps for the first time.
I remember compelling society that, when it comes to new-born babies, she only shows smiling mothers and reduces suffering by preventing red-buttocks by pampers.
According to the paediatrician, Liesje would not get the next day, then no week, then no month. He immediately linked her birth with dying and so he destroyed every sparkling hope. When you take away the hope of parents, you risk killing the child.
As a result, Liesje did not receive the treatment that could immediately give her a fair start to her life. As a result, she became more severely disabled than she was at birth.
Slide 18
As a father to Liesje, I experienced the caregivers as outsiders, they were a part of the pain instead of being a first step towards a solution. Her announced death was the first and only answer from the paediatrician to our pain. After three months, Liesje was still alive and we changed from hospital. There we got the right information and Liesje was finally treated. We finally got perspective and hope.
Slide 19
I was indignant and angry and I set up a self-help group to fight with fellow parents for proper information and better care.
Liesje became a happy child. She went to an ordinary school, even though she was walking with a wheelchair. She was playful and had a great sense of humour. Liesje was very popular and when I brought her to birthday parties, the parents often did not even know Liesje was in a wheelchair. Their child had told Liesje came, but not that she was a bit different.
Slide 20
Liesje comforted me in the sense that comfort means “staying with someone else’s pain.” Do not run away. Liesje didn’t. This I learned from her, not running away also as a psychotherapist.
My most beautiful therapeutic successes were not the result of genial analytic interpretation or the use of a psychotherapeutic technique. Real change occurred when my client was finally able to share with me his most unbearable pain. Endless minutes of raw pain. Sometimes I had to count in myself 21, 22, 23, to bear the pain and remain with my client. At that slow powerless moment, something new popped up.
Slide 21
When Liesje died unexpectedly just before her 11th birthday, the result of a medical mistake, and we were left behind without having Liesje to comfort us.
For a long time, I did not want to share the sadness of her death because exactly in that pain I still felt the contact with her. But the pain of the unrealistic desire to get her back became unbearable. I swallowed her and buried Liesje in myself.
Slide 22
Only ten years after her death, I could write a book about her. Liesje, searching for words for the birth and death of a special child. Words because sometimes words are like killing weapons, because the world speaks differently about her disabilities than how they occur in daily life.
Liesje is still alive in my work for Child-Help, an organization that has already contributed in developing countries to providing timely neurosurgery to more than 50000 children with spina bifida and hydrocephaly.
Slide 23
Did you know that the medical literature began in the nineties that her disability did not or hardly occurred in Africa. Now we know that the incidence there is much bigger than here. The children did not even get into the statistics. Still not now, because the registration of the world health organization of children with disabilities starts only from the age of three. Without treatment, the vast majority dies and they do not seem to exist for society.
Several of the children we helped in the nineties now work in our projects as a social worker, nurses and even one as a medical doctor. In each project we also support a self-help group because parents learn from each other to their fate back in their own hands.
Slide 24
To me as Liesje’s father, It is difficult to that in estimation half a million new born children with spina bifida per year remain under social radar.
For future mothers, the gynaecologist says that her unborn child with spina bifida or not viable or will suffer an unbearable pain or will not have any acceptable quality of life. Therefore, in Belgium more than 90% of these children are eliminated during pregnancy.
In the Netherlands, 22 live-born children with spina bifida were killed with knowledge of the department of justice. New England published the so-called Groningen protocol setting out the selection criteria for killing a child with disabilities at birth.
In this work I made a foetus with spina bifida that says “I’m looking for a lawyer”. I became his lawyer in the meantime, but I seem to advocate for a lost case. The medical evolution is going so fast that ethical reflections we always comes after irreversible facts.
Slide 25
At the request of Independent Living, an international association of people with disabilities, I wrote in braille on glass, the letter by which Hitler deployed T4, his elimination programme of persons with a disability of psychiatric diseases. I placed it in a room full of worn children’s clothes and orthopaedic technical aids. The work was to be seen in the royal library of Naples and in the Museum Dr. Guislain in Ghent.
Slide 26
I estimate that 80 to 90% of children with spina bifida in developing countries do not have access to the necessary surgery. They end like Joshua in Manila, blind and with a giant big head or die a slow death.
The world returns its back for suffering, pain and death.
Slide 27
Why are we so afraid of death?
I was present at the death of my grandmother. She had two daughters. Both of them where remotely waiting, each in a different corner of the hospital room for the last breath. My grandmother threatened to die so lonely in the presence of her two beloved and loving children. I took her head in my arms and told who was in the room and that they were with her. So my grandmother calmed town and died in my arms.
It is as simple as this: Proximity means ‘not walking away’.
That’s what people need in both when dying and in pain
Slide 28
We live in the illusion that pain can be avoided or excluded.
We live in the denial of sickness and death and when we face it, we suddenly seem to be the only one who faces it.
A world without ‘shit’ is ‘kitsch’ says Kundera, in his book ‘the unbearable lightness of being ‘ . A plastic rose does not wither but also has no smell.
Slide 29
Being touched in my own flesh and blood this has changed my focus in art. I became interested in how the world relates to the vulnerable individual.
My further oeuvre would play outside my studio on the axis between mass and individual pain. Between society and minorities.
Slide 30
I worked several months with a woman who suffered from Alzheimer disease on a
double show, presenting her work in the Institute’s gallery and pulling me back to the furthest corner of the elderly home. With artistic interventions, I underlined the reality of life in an institution. The painted objects were used by residents and thus became part of their living environment. The visitors to the exhibition came where no one normally comes. Because in the end station of life, we rarely get visits.
Slide 31
Last year, I disguised as a notary and sold the places in the tourist town where the homeless were driven out. According to the city council of Antwerp, they dirty the touristic city’s view. On a public auction, I sold a piece of the subway hall, a corner of the central station, a sidewalk, a bank in the city.
Slide 32
With the income, I made a homeless newspaper with colleagues, artists. Dirk De Wachter, Guiliaume Bijl, Koen Vanmechelen, Tom Lanoye, Vaast Colson and many others sent in a work of art free of charge. More than 2500 copies were sold in the streets by homeless people for 2€ each. In the gallery we sold the numbered and signed newspaper for 20 €
Slide 33
As a psychotherapist, I am focusing more and more on people with chronic pain.
They usually come late with us. They have tried everything, but their complaints remain. Under pain, I understand both chronic physical pain and prolonged psychological suffering with successive depression and hospitalisations.
When it comes to physical pain, they have already undergone multiple operations, implanted pumps or electro stimulators or tried out for years all sorts of heavy medication. Some lost a lot of money in the alternate circuit. Many participants are medically out-treated. They became through their many years of pain completely isolated.
Slide 34
Loneliness, poverty, failed treatments with the connected associated inconveniences are often experienced by them as a greater pain than the initial injury or trauma. The pain clinics refer them finally to our centre for psychotherapy.
This is often experienced by the client as humiliating.
Psychologizing the pain they initially see as a denial of their real physical suffering.
Slide 35
Nevertheless, most of them agree on our proposal to “let the pain be” and let the body to speak. This because they have experienced for years that the pain does not go away.
They feel not helped and think they see through the failing health system. They feel their pain is not really heard.
They experience the help, like I at the birth of Liesje, as part of their suffering instead of being a first step towards a solution.
Slide 36
Their pain became a clew. The more they tried to dislodge that knocker, the faster he came. By no longer pulling the knot, the ropes relax and this make moving forwards posible again.
Together with supporting fellows, they rewrite their story, with the facts of their lives. Through the self-help of the method, people are invited to come back to their strength and not just give their “fate” to the “doctor” or the “psychologist.”
Participants report that they are getting stronger from the group experience to come to live their lives
Slide 37
One of the most important results is that people get out of their isolation. They learn to talk about their pain and learn better to estimate how much their friends and family can take. It allows them to reactivate or expand their relationships.
Recognition and acceptance open the way to introspection. Under the pain, old traumata are often hidden, which now finally get the attention they deserve.
Slide 38
Most people who come to this group therapy of pain, like been victims of neglect, violence or sexual abuse as a child like Anja did. Often this has never been spoken because the somatic complaints demanded all attention.
Chronic pain often appears to be associated with an incorrect channelling of aggression. Unconscious or unauthorized anger for what has been done to them is then suppressed and compensated for years for hard work, exceeding the limits of its own body. Until the body says ‘stop’, and merges.
Anger elaborated on themselves is causing chronic pain.
Slide 39
By becoming aware this anger and directing this anger the cause and not on themselves, the self-destruction reduces which can be an important component of the pain.
The PAIN group can also be seen as a group for trauma patients. Misleading treatments are experienced as a recurrence of the trauma. This insight creates the most realistic hope and faith in change for most participants. They understand what has happened to them and they re willing to get started with it.
Medicine, as well as psychotherapy, have a mostly the ambition to cure.
Most caregivers unhook when cure is no longer possible. You must heal, die or as Joshua disappears.
Slide 40
From a disability you never cure
People with disabilities, as well as chronic psychiatric patients, do not want to live in the ghettos built for them last century.
They are now soliciting the outpatient healthcare industry, which unfortunately does not get the time or the means for it.
We can learn a lot from people with disabilities. They have learned to adjust their environment and lifes to their limitations and do not expect to cure their disability.
Slide 41
They claim that their quality of life depends more on an accessible and welcoming society than on the handicap itself.
Coping with chronic pain requires a different approach than the false hope of cure.
Where hope of vital importance is for cure, false hope becomes part of the pain. Also when dying. This I learned, both in coping with Liesje’s death and in my work as a therapist: fighting pain increases the pain.
When people accept their death and stop fighting, they often take hold of their lives and really say goodbye to those who love them. The ropes relax and dying getting sense and the farewell gets the place it deserves.
Slide 42
Solving ‘medical’ pain, if it succeeds, is often a denial of the meaning of that pain.
I do not plead for a thorough fight against physical pain, on the contrary. I would be pleased to have a fraction of the money going to cancer treatment research to go to research on effective end-of-life pain relief. I am convinced that all physical pain at death can be controlled. Sinless pain as a result of meaningless treatments, we all agree on this, must avoid at all times.
I especially advocate listening to the mental pain that is part of the physical pain.
Chronic pain and supportive dying guidance asks the best caregivers because helping to cure is much easier than dealing with chronic pain and dying.
Slide 43
Dying counseling is the opposite of surgery.
I work in Africa a lot with neurosurgeons. The doctors who opened for Liesje the door towards valuable life, but the doctors who chased her into death.
One of them, a very nice man who has already done a lot for our children in Africa, sighed about the attitude of some of his colleagues and asked me what the difference between God and a Neurosurgeon …
He laughed, “God does not think he’s a neurosurgeon.”
Slide 44
Dying are often unsubscribed in pain. Those who choose in their work not to walk away from these mental and physical pain will live the most beautiful human encounters, although sometimes they will have to count in themselves to not walk away.
We need to learn to read between lines of pain. To hear signs, to feel words, to smell loneliness, to see sorrow.
Slide 45
I end up with this boy’s dream with spina bifida from Uganda.
I asked him : what would you like to be later?
Doctor, he said.
Why did I ask?
“I want to be there for kids like me”
Medicine and care in the vicinity