Monday, 8 September 2014

45. Of mothers and children

Writing the blogpost about talking to teenagers made me think…

What if my children were small? What if I couldn’t say with a fair degree of confidence that my cancer will be sent packing? What if I had to tell my children something that is too dreadful, too big? And what if I didn’t have a husband who can provide a safety net for them, taking over when I am too tired or too distressed to explain that I am too tired or too distressed?

My mother with her three daughters in 1969 (more of her later)
Writing that blogpost about teenagers made me think of Amanda’s experiences as a child.

Amanda has intellectual disabilities. Her father died in a car crash when she was tiny, and when she was 14, her mother died of cancer. Amanda was an only child.

Amanda is my colleague and my friend. We didn’t start off as colleagues. We got to know each other in 2007, when she was a participant in my research study on What is it like for people with intellectual disabilities to have cancer? Her recovery from cancer involved a grueling year of chemotherapy treatments. She spoke eloquently about her experience and we published her story.
Amanda and her cancer story (2008)
Amanda was so keen to help doctors and nurses learn how to communicate better with people who have intellectual disabilities, that I recruited her to work at the university as my co-researcher.

Since then, Amanda and I have travelled across the UK and abroad, giving talks together about cancer and breaking bad news. To her delight (and, secretly, mine too) our picture made the French newspaper (local one, but still) and the front cover of a Dutch journal.

Amanda was keynote speaker at the first international symposium on cancer and intellectual disabilities
(France, February 2014)

What made me think of her last week was not so much her own cancer experience (although I must talk to her some more about that, this time as a fellow cancer patient. Now that I am struggling through chemo myself, I wonder how on earth she kept going?).

What made me think of her was a question I asked her, years ago.

“Out of all the things that have happened to you in your life, what has been the most difficult?”

It could have been all manner of things. To say that Amanda has had her share of difficulties in life is an understatement. Apart from losing both her parents in childhood, she has had to contend with the brain damage she was born with (leading to mild cerebral palsy and intellectual disabilities); living with an aunt as an infant whilst her mother recovered from the car crash that had killed her father; bullies at school; physical and financial abuse by her foster carer in her 20s; a diagnosis of non-Hodgkin’s lymphoma at the age of 30; and an aggressive programme of cancer treatments.

Which would she pick? I wasn’t prepared for her answer, which came without a moment’s hesitation.

“The worst thing of all was that my mum didn’t tell me she was sick. I still regret it now. She never told me that she was dying… She wanted to protect me. Of course, things like that are upsetting, but it’s definitely better to know. She used to be in a bad mood all the time, she used to shout at me, it was horrible. And of course I didn’t understand why!”

(We made a short YouTube video where Amanda talks about all this to me. You can watch it here. The poor chap filming it was utterly taken aback by our interview, and horrified when he had to ask her to repeat things a few times because of background noise. We laughed, reassuring him: Don’t worry! We have talked about this lots of times already! Amanda speaks it in front of large audiences!)

Writing that blogpost about teenagers also made me think of my own experience of having a mum with cancer.

It is not something I have really thought about before, because I was far too young to realise what was happening and have, as only children can, always accepted our home situation as perfectly normal.

But with me having cancer and my mother dying, suddenly, there it is with a brand new clarity.

When I was barely two years old, my mother had Hodgkin’s lymphoma.

It never seemed strange to me that she was often in hospital, that various family nurses pitched up at our house to look after us (my sisters were two years older and one year younger), that the three of us were sometimes farmed out to stay with various neighbours or relatives, that we were regularly put on the back of my mother’s bike to go and see the doctor at the hospital, that she was often tired, that we would have to play quietly in the living room whilst she rested in bed. That was just how it was.

In the same way, it was normal that it was just the four of us. My father had left suddenly and unexpectedly, not long before I was two. He never came back.

Now, I am putting these facts together, and I am flabbergasted.

How on earth does a young mother cope, being suddenly left as sole carer for three children under the age of four, having a cancer diagnosis and going through intensive chemotherapy treatment? (Only when she was dying and I was newly diagnosed with cancer did I realise, by talking to my older sister who has always known this, that all my mother’s hospital admissions, appointments and bed rests involved chemotherapy.)

But whilst I sailed happily through childhood, my older sister didn’t. Being the eldest, being much more aware, being a highly sensitive and perceptive child, and feeling too much responsibility too young, she saw that our mother was ill, or tired, or red-eyed from crying. My sister was worried.

But when she asked about it, our mother would put on the brightest smile she could manage and deny it. I’m fine! Everything is fine! Tralalala!

Oh, it makes my heart ache. For Amanda and for my sister, who were confused by a changing and worrying situation that was impossible to understand.

Presented with conflicting evidence (I can see that mum looks ill/angry/upset & mum says everything is OK), which is the child going to trust? Her own worrying observations and feelings, or her mother’s glossy reassurance?

Thinking about what my son said (“If nobody explains things, you are just left with lots and lots of questions”), who were these young children going to turn to with their questions and their worries? My sister was far too young. Amanda was disabled. There was no other parent available, no other source of safety. They were vulnerable and they were alone.

But my heart aches, too, for the mothers.

Both were undoubtedly consumed by worry about their children. They were single mothers (my own mother traumatised by her recent new single status).

Amanda’s mother knew she was dying. My mother was not predicted to survive either. (The doctors, apparently, were amazed at her recovery.) They must have been utterly devastated by their situation. No wonder they wanted to protect their children from such distress.

It’s bad enough for me, with a happy prognosis, a rock of a husband and children old enough to look after themselves. Even now, I find myself regularly unable to cope with family life in a way that would make it into the Book Of Outstanding Parenting Skills.

If my outlook was less than rosy, I doubt whether I’d be able to tell my children. I certainly couldn’t do it on my own, and I couldn’t cope with supporting them through the situation. I would need all my energy to survive each day.

On top of that, these were the 1960s. Remember, even doctors might not tell you about your cancer in those days. My mother, apparently, was advised by some official person that she absolutely mustn’t talk to us about the divorce, or about being ill. (Years later, she expressed regret at having listened to that advice.)

If only the mothers could have had more support. If only these little girls could have had more support.

Then, perhaps, they would not still be coming to terms with the memory of not understanding, not being told the truth, not being able to trust your own feelings. Thirty years later. Fifty years later.

They are both amazing women. This post is a tribute to my mother and to Amanda’s mother, but also to their wonderful, strong daughters who have survived childhood traumas.

My mother with the three of us, about a year after her cancer diagnosis

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