Exhausted and still in pain
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.
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 which I placed against the cold blue tiles in the kitchen the castle.
The picture of the child with scars was printed on large scale, so that the invited person literally held the damaged child's body in his hands.
|Pierre Mertens 'scars'|
This was a statement in the post Dutroux year where child abuse was actually prominent. Scars, because psychotherapy does not want to leave pain. Even when scars are the result of pain from long ago.
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.
|Berlinde de Bruyckere 'Cripplewood'|
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 crawl on it like an ant.
At the biennial this year, I was struck by the great paintings of Safec Zec in the church of Dela Piéta. Virtuously painted on newspapers implying the dangerous journey of the thousands of asylum seekers in the Mediterranean.
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.
They have been replaced by hail-white galleries and museums that have become 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 us happy.
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 a truck and sustained a skull fracture. She suffered a slight spasticity and a lot of physical pain.
A few years later, young Anja convinced 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 he died the pain made an invalid of 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.
I referred her to a colleague because, when she really demanded euthanasia, I wanted to stay on the side of life as psychotherapist. I gave her 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 had not answered literally her demand and this was in contrast to the gynaecologist and surgeons. I just offered to listen to her. 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 tell me her story bit by bit.
Anja told me that she had been 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 there were also sexual proposals from her father.
None of this had ever been spoken about, not in psychiatry, not with the gynaecologist and certainly not with the surgeons.
People who suffer from chronic psychological or physical pain often relate to the health system such as asylum seekers. They hardly dare to tell their real story.
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 a therapist I try to remain with the pain of the participants, however 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.
The three artists I mentioned incorporate in their artwork pain, injuries, violence and cruelty. Also Jewish Boltanski who builds his entire art work on the deaths of Auswitch.
All these works of art are made in respect and involvement with the subject. Therefore, they grab us by the throat and show us what the world usually keeps hidden.
The world turns its head 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
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.
Through my daughter Liesje, who was born with spina bifida and hydrocephalus I was faced with these handicaps for the first time.
I remember complaining to society that, when it comes to new-born babies, it only shows smiling mothers and reduces suffering by preventing red-buttocks by using pampers.
According to the paediatrician, Liesje would not survive one day, then not a week, then not a 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.
|Liesje, Leen, Pierre & Maarten Mertens|
As a father to Liesje, I regarded the caregivers as outsiders, they were a part of the pain instead of being a first step towards a solution. Her predicted death was the first and only answer from the paediatrician to our pain. After three months, Liesje was still alive and we changed hospitals. There we got the correct information and at last Liesje was treated. We finally got perspective and hope
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 mainstream school, even though she used a wheelchair. She was playful and had a great sense of humour. Liesje was very popular and when I took her to birthday parties, the parents often did not even know Liesje was in a wheelchair. Their child had told them that Liesje would be coming, but not that she was a bit different.
Liesje comforted me in the sense that comfort means "staying with someone else's pain." Do not run away. Liesje didn’t. Even as a psychotherapist, this I also
learned from her, not running away.
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 to myself 21, 22, 23, to bear the pain and remain with my client. At that slow powerless moment, something new popped up.
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.
It was only ten years after her death, that 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 lethal 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.
|Keilla and Pierre Mertens|
Did you know that the medical literature available in the nineties stated that her disability did not or seldom occurred in Africa. Now we know that the incidence there is much bigger than here. The children did not even get into the statistics. Not even 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 die 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 one as a medical doctor. In each project we also support a self-help group because parents learn from each other to take their fate back into their own hands.
To me as Liesje's father, It is difficult to accept that the estimated half a million new born children with spina bifida per year remain under the social radar.
Mothers-to-be are told by the gynaecologist that her unborn child with spina bifida is 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 terminated during pregnancy.
In the Netherlands, 22 live-born children with spina bifida were killed with knowledge of the department of justice. The medical journal ‘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". So, for a time I became his lawyer, but I seem to advocate for a lost cause. The medical evolution is going so fast that ethical reflections always come after irreversible facts.
|Pierre Mertens T4 letter from Hitler in Braille|
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.
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 turns its back on suffering, pain and death.
Why are we so afraid of death?
It is as simple as this: Proximity means 'not walking away'.
That's what people need both when dying and in pain
We live with 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.
|Painting Pierre Mertens|
Being touched by my own flesh and blood has changed my focus in art.
I became interested in how the world relates to the vulnerable individual.
My future artwork would play outside my studio on the axis between mass and individual pain.
Between society and minorities.
|Tandems of Alzheimer|
I worked for 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 home for elderly people. 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 at the end of life, we rarely get visits.
|Pierre Mertens & Dries Segers: Undercover|
With the income, I produced a homeless newspaper with artist colleagues, 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 €
|Berlinde de Bruyckere|
As a psychotherapist, I am focusing more and more on people with chronic pain.
They usually come late to us. They have tried everything, but their complaints remain. Under pain, I understand both chronic physical pain and prolonged psychological suffering with eventually depression and hospitalisations.
When it comes to physical pain, they have already undergone multiple operations, implanted pain pumps or electro stimulators or tried out for years all sorts of strong medication. Some lost a lot of money in the alternate circuit. Many participants have exhausted all medical remedies. They became, through their many years of pain, completely isolated.
Loneliness, poverty, failed treatments together 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 felt by the client to be humiliating.
They initially see psychologizing the pain as a denial of their real physical suffering.
Nevertheless, most of them agree with our suggestion to "let the pain be" and let the body speak. This because they have known for years that the pain does not go away.
They experience the help, as I did at the birth of Liesje, as part of their suffering instead of being a first step towards a solution.
Their pain became a clue. The more they tried to dislodge that feeling the more entrenched it became. By no longer pulling the knot, the ropes relax and this make moving forwards possible again.
Together with supporting colleagues, they rewrite their story, with the facts of their lives. Through the self-help of the method, people are invited to retain their strength and not just leave their "fate" to the "doctor" or the "psychologist."
Participants report that they are getting stronger from the group experience to enable them to live their lives
One of the most important results is that people no longer feel isolated. They learn to talk about their pain and are better able 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 traumas are often hidden, which now finally get the attention they deserve.
Most people who come to this group therapy of pain have been victims of neglect, violence or sexual abuse as a child as Anja was. Often this has never been spoken because the symtomatic complaints demanded full attention.
|Performance of Ambramovic|
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 of hard work, exceeding the limits of its own body. Until the body says 'stop', and merges.
Anger directed towards themselves is causing chronic pain.
By becoming aware of this anger and directing this anger on the cause and not on themselves, the self-destruction reduces what 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.
In medicine, as well as psychotherapy, the main desire is to cure.
Most caregivers give up when a cure is no longer possible. You must heal, die or, as Joshua, disappear….
|Pierre Mertens: 'larme de la justice'|
You can never cure a disability.
People with disabilities, as well as chronic psychiatric patients, do not want to live in the ghettos built for them last century.
This is why they are now talking to the outpatient healthcare industry, which unfortunately, does not give the time or the required means to it.
We can learn a lot from people with disabilities. They have learned to adjust their environment and lives to their limitations and do not expect a cure.
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 to the false hope of cure.
Where hope is of vital importance … 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 they find there is sense in dying and the farewell gets the place it deserves.
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. Senseless pain as a result of meaningless treatments - we all agree on this - must be avoided at all times.
I especially advocate listening to the mental pain that is part of the physical pain.
Chronic pain and supportive dying guidance require the best caregivers because helping to cure is much easier than dealing with chronic pain and with dying.
I work in Africa a lot with neurosurgeons. Doctors who opened for Liesje the door towards valuable life, are also the doctors who chased her into her 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 if I knew what the difference is between God and a Neurosurgeon.
He laughed, "God does not think he's a neurosurgeon."
|Pierre Mertens: hearing signs (sign language)|
There is insufficient awareness of the pain of the dying. Yet those who choose in their work not to walk away from such mental and physical pain will live the most beautiful human encounters, although sometimes they will have to count in themselves , as I have as a therapist, to ensure they do 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.
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, …..I asked ?
"I want to be there for kids like me"
Medicine and care in the vicinity