In this piece I will say a bit about my a mother who had brain tumours. I understand now why it took so long to write it! Never easy to write about one’s mother.
My volunteering at Headway was originally with an art project in mind about the consequences of my mother’s brain injury. The idea was to draw on the experience of volunteering at Headway and gain a more objective grasp of living with a brain injury. I hoped to engage members in creating textile artworks representing their experiences. How naive and ignorant I was! Even though I prepared by reading scientific books about the brain, I soon realised I knew nothing and stopped trying to ‘understand’ with this mind-set.
Each week, during our Tuesday volunteering morning meeting Tasneem, our volunteer coordinator, goes through what we need to know about the various affects of brain injury of two members. As she explained the various conditions, I slowly recognised small signs that related to a small brain injury I had and which had been left unexplained to me by medical professionals. At first this unsettled me, while at the same time I felt so lucky. Now seeing these signs like fatigue, mumbled speech, lack of memory meant I acquired a better idea how to manage them. I also felt overwhelmed by the care and support I received from Headway East London. I had not been used to this level of acceptance, understanding and support. Becoming aware of the basic affect of brain injury is vital to everyone. It is one of the last obstacles in raising public conscientiousness, for no one is immune the possibility of a brain injury or of caring for someone who has had a brain injury.
At first I volunteered in the Headway art studio, ‘The Arch’, and then I began to volunteer in the main reception area. This means interacting with members in different way than helping with producing an artwork. I noticed some small similarities between some members and what I had known of my mother’s behaviour, like jerky movements, the ‘flat-affect’, the unintentional tone of voice, etc…
My mother had her first operation at the age of 23 in 1950, just five years after World War II. From being a messenger for the resistance during the war in France, she became totally dependent on others. From being seen as a heroic figure, she was now seen as a mad woman.
I was born the year after her first brain operation. I have only known a mother with a brain injury. During post-war France structures for social care had been eroded by the war. The social care available was from the Catholic charitable order, which had operated during the war. There were two options for any parent unable to look after their child; adoption or leaving them in an orphanage and recuperate them later.
By volunteering at Headway East London, I understand how my mother’s brain injury affected her. There was the unpredictability of epileptic fits, mood swings, lack of memory, lack of a routine, a vital dependency on others, constant nervousness, speech intonation which on reflection mislead her intentions. Coming to Headway I witness the main difference of care between the 50’s and 2018. It is a startling, optimistic and moving revelation.
My mother died at the age of 30, soon after her third operation. It was normal for my brother and I to be continually on the ‘look out’ of what might happened next. Normal to be connected and disconnected from her at any moment for any length of time, especially when hospitalised or in times of recovery from surgery. Whenever we met as adults, my brother and I remembered her well with a deep affection and missed her warmth.
During two of the ‘family days’ I was able to attend at Headway East London, I observed entirely different responses from members who were parents to their children, as to what I had known as a child. This of course is due to the uniqueness of the individuals, their injury and family circumstances in present time UK, and to the evolution of science and social care across the decades, but also to the extraordinary safety and specific culture of care, provided by the staff at Headway. It was a revelation to witness the caring way some mother, father, or partner interacted. They seemed to bridge any disparities in the communication between the injured parent and their child, as if they were emotional translators so that the child remained occupying the safe space one wishes for every childhood. Of course this happens in most families, here it appeared to me with greater care and sensitivity.
On one occasion during a painting session, I observed a father (a Headway member) trying to communicate to his daughters how to mix a particular colour as she was reaching the end of her a painting, while at the same time one could see he felt overwhelmed by the liveliness and noise level in the room. His face grimaced as if in pain. He quickened his efforts with a raised tone of voice which did not match his kind words. The children looked confused. His efforts in persevering with his instructions only aggravated their bewilderment. The mother who stood by immediately understood this disconnection between father and child and resolve it by explaining the father’s intentions and comments with a calm voice. Both father and child relaxed and all returned to the enjoyment of the day.
During these two family days, I grasp a deeper understanding of Headway’s Moto: Submit to Love. This soul and love was what my brother and I inherited from our mother beside her brain injury, and I believe what many sons and daughters from parents with a brain injury inherit across time.