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Growing Up in The Shadow of Sickness

2.0 from 3 votes
Wednesday, October 03, 2018

LONDON, UK - Gaby Koppel's daughter, Sarah, was life-threateningly ill as a child. She talks to other women who survived childhood sickness, and asks if a traumatic experience at a young age affects the paths you choose as an adult?

I'm finding Nancy Payman difficult to read. We've met in a chic Temple Fortune café where on-trend affluent people sip lattes and nibble delectable little morsels. Superficially she fits right in.

With her sleek dark hair, astonishingly bright blue eyes and a long, swishy, summer dress, if you passed Payman, 37 on the street outside you'd assume she was another of those confident and worldly young women who flit in and out of the North London boutiques. But as she puts down a bag of M&S groceries and settles into the chair opposite mine, I think I can detect something else — maybe a quality of vulnerability, a fragility or underlying sadness. After a while I begin think it's just the fact that she's so desperate to make things better — for other people, for the world — in the same way as she was made better when she was a child.

As an infant, Payman nearly died of an acute and rare kidney condition. The fact that she's well now, and possibly, that she is here at all is because a doctor was willing to act on a hunch. Though happily married with two young children of her own, she'll never know when a relapse is just around the corner. She had one last year that kept her in and out of hospital for five months. It was touch and go and she's understandably shaken by the experience.

She was fifteen months old when her mother, TV executive Jane Lush, found her in her cot, bloated with excess fluid. After being rushed to Great Ormond Street Hospital, she was diagnosed with a rare disease FSGS nephrotic syndrome which is caused by the immune system attacking the kidneys. One high profile sufferer of the rare disease was New Zealand rugby star Jonah Lomu who died from complications aged just forty. Jane and husband Peter were told that eventually Nancy would need a transplant, which would have a limited lifespan because her body would continue to attack the new kidney. A life of successive transplants seemed inevitable, and the doctors predicted that the first one would be needed when she was about four years old.

In the event, they managed to keep that at bay, but there were years in and out of hospital, until one of her doctors got permission to try a chemotherapy drug not usually used for her condition. The result was far better than hoped. Though the therapy doesn't necessarily work for other sufferers, Payman went into remission and remained symptom free for twenty years.

But I'm interested in the bit before that, when she was a child and an adolescent. Did she realise how serious her condition was?

"I knew there was something wrong with my kidneys but I didn't fully understand the dangers," she says. "I didn't like all the injections and the prodding and the poking but I didn't ask many questions. When I was a teen, my parents told me I was high risk for a transplant. But they were good— they didn't treat me any differently than other children. The only thing was when I was at school I had to have different lunches without any sodium."

Nancy has worked for a number of Labour MPs, and for the Holocaust Educational Trust — motivated by a strong social and political awareness. "It sounds cheesy," she admits, "but you are more aware of people's pain and suffering because you've seen it at first hand."

She thinks she's been deeply influenced by spending so much time in hospital surrounded by a wider range of people from different faith backgrounds, social and economic classes than she would otherwise have encountered.

" I am more spiritual and idealistic than average— but," she shrugs "maybe that's just my personality."

A year after her relapse, Nancy is organising a walk in Richmond Park to raise money for kidney research, and raising a Labrador puppy she hopes will become a therapy dog to go into hospitals and hospices.

Could Nancy's altruistic impulses be linked to her brush with death? Of course it's true that lots of people who have never been ill also organise sponsored walks and act generously or selflessly in all sorts of ways. But I 've often wondered about the effect of growing up with a life- threatening illness, because I've watched my own child do just that.

Sarah, now 22, was born with a rare and lethal heart condition which has required multiple operations, but then came the double whammy — she developed a scoliosis or curvature of the spine which called for more major surgery to correct and is now kept straight by a lot of metalwork.

When she was small, people would often say to me a propos of her heart condition, "Ah, Sarah, she's such a spiritual child", and I would grit my teeth behind the smile, because I thought they were projecting onto her a romantic Victorian notion of illness.

But as she grew it became difficult to deny that just like Nancy, Sarah had grown up to have a keen sense of empathy, and an uncanny ability to connect with other people. She also spent school holidays volunteering at a day centre for young people with profound learning disabilities, and at the age of nineteen had her hair shaved off to raise money for them. This summer she was on the leadership team at not just one summer camp but two — one for Jewish youth and another for refugees.

She tells me that she was very aware of being supported by all the doctors and nurses, and a sense of guilt made her want to turn the tables so that she was the one providing support instead. Within her social circle, she's conscious of being the one others turn to talk about their problems.

If anything, Sarah's view of her illnesses is that of a survivor. She admits to feeling 'proud' of the long scars that bisect her chest and back, and talks in glowing terms of the cardiologist who oversaw her childhood care. However traumatic it may have been for us as parents, for Sarah the overall impact on her mind-set has been more positive than negative.

Psychologist Janina Scarlet agrees that a childhood spent in hospital often has a deep affect through to adulthood. She thinks children who have experienced long-term sickness can seem more mature, and though she's keen to emphasise how difficult it is to generalise, she says that those who manage to take something good out of adverse events, such as life-threatening illness are likely to become more empathic toward others. She says this 'post-traumatic growth', is what comes from a healthy response to physical and emotional pain.

The flip side of this is that the children who cope less well with what has happened to them might be more likely to experience anxiety and depression. She says that they can find it difficult to handle conflict with a loved one and can struggle to form attachments.

For Scarlet, all this is personal. She grew up in the Ukraine during the Soviet era, and a few months shy of her third birthday was exposed to Chernobyl radiation which compromised her immune system, resulting in severe nosebleeds, migraines, seizures and chronic nausea.

Eventually her Jewish family was allowed to leave the USSR to seek medical treatment. Now living in New York, she says that her illness initially left her traumatised and fearful. It's not a coincidence that she's made psychology her profession— she wants to share what she learned from her own experiences as a patient. Scarlet says that learning to face her difficult emotions helped her to become more courageous, and she's developed a method of working with traumatised youngsters to build what she calls a 'superhero' narrative for themselves to overcome their anxieties. It's a way of helping them find that healthy post-traumatic growth.

"For example, someone who experienced child abuse might then become an advocate for survivors of child abuse, and someone who experienced severe illness in childhood and help others as a teenager or as an adult by visiting hospitals or by working on projects to increase awareness and support for others."

It seems to me that both Nancy Payman and my daughter Sarah have done that quite instinctively — both have looked for a way of translating their vulnerability into strength. As Sarah says, "I can be other people's support system. I just love helping them, but it's hard to say exactly why."

Nancy echoes this, "If I had gone down the path of emotionally battling with the disease it would have eaten me up. I have made a decision to walk hand in hand with it— to accept it as part of who I am and try and turn my experience into something positive."

Nancy's 15 mile walk round Richmond Park will take place on Sunday 30 September to raise money for kidney research.

Books by Janina Scarlet include:

Superhero Therapy: A Hero's Journey through Acceptance and Commitment Therapy (Robinson)

Therapy Quest (Robinson)

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Author: Gaby Koppel
Source: The Jewish Chronicle Online
2.0 from 3 votes
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