I am not my body is a social documentary about euthanasia. In the summer of 2016, I met Claire, a now 34 year old woman in a wheelchair. I met her through her hypnotherapist who has been treating Claire for her unrelingishing pains in her right foot. He came to me with the idea to start a documentary on her life, her pain and her wish for euthanasia. The project resulted in this book that started of as a testament and finally turned into a message of transformation.
This journey has been a challenge on so many levels and there were times that Claire and I felt like abandoning it. For Claire the photos and the settings in which they were taken were confrontational; inviting her to revisit old trauma, challenging her beliefs on life and death and redefining her relationship with her parents and friends. In January 2017, Claire expressed her desire to start the process that would eventually lead to ending her life.
Her announcement was met by family and friends with mixed feelings, ranging from disbelief and incomprehension to acceptance and expressions of care and love. Among the multitude of medical practitioners who haven treating Claire for years on end, her wish to take her life was met with serenity, although it also left the doctors with more questions than answers on the moral implications of such ultimate act. Yet they always met their patient with respect; never imposing their personal beliefs.
On the 7th of January 1990 bad luck struck. Claire, 6 years old at the time, fell from her bicycle and hit her head on the tarmac in the Bois de La Cambre, a parc-forest in Brussels. A stupid small accident as she describes it now, but which would determine and prematurely end her life’s path. That same evening the headache and vomiting started and she fell into a coma for 3 weeks. The brain haemorrhage that resulted from the fall would leave her with impaired speech, epileptic seizers, and with spastic diplegia. This impairing condition caused her to be unable to un-flex her legs and feet into a normal stretched out position, thus condemning her to a wheelchair. During that time she started over her first year in school while receiving intensive physiotherapy in a medical centre her mother was working as a social assistant.
In August 1994, Claire went on a car holiday to France with her brothers and parents when catastrophe hit. Just outside Dinant on the motorway, one of the car tires exploded making her father loose control over the wheel resulting in Claire being ejected out and somehow finding herself under the wreckage. Although she cannot recall what actually happened the nightmares however, never went away. Only her severely scared back remains a silent witness of what had occurred that day.
As a result of the high pressure on the knee joints caused by Claire’s spastic diplegia she started to suffer from fractures and joint dislocations. In order to put her legs back into an outstretched position, thus removing the pressure on her joints when she would walk, she need to be operated on 4 locations on both legs. The operation got scheduled for the summer of 1996, and although the operation appeared to be a success, it did not help in regaining her mobility. More so, not long after Claire started to suffer from postoperative complications. One of the screws that were used caused for some tissue to go necrotic as a result of a bacterial infection over the period of a year and a half thus leading to two more operations on her legs.
In 2007 Claire needed another operation to relief tension on her left Archilles tendon. In 2009 she starts to experience pains in her right foot and for 3 years she managed that pain with regular painkillers. In 2012 the pain becomes too severe and she needs to quit her job. However, the doctors were not able to come up with a diagnosis. Non of the specialists she visited saw another operation as a viable option given the risks involved. Pain management trough pain medication such as morphine would become her only viable option while the pains would continue to increase in the years to come. Medical specialist remained puzzled whether her pain is due to an actual physical issue or due to psychological trauma.
As a result of Claire’s insistence, her pain specialist decides in 2017 to do an experiment in order to test the hypothesis whether there is an actual physical cause to her pain symptoms. By anesthetising the main nerve in her leg he was able to conclude that the pains are the result of nerve damage caused by her many surgical interventions. This conclusion made her legible to a specific form of intervention that would involve a surgical intervention where electrodes connected to a neuromodulator would be implanted into her spine for directly managing pain signals going to and coming from her brain.