Sunday 24 June 2018

Fighting for fairness

Valerie Cox has covered many issues in her long career as a well-respected journalist. But she tells Joy Orpen, nothing has been more challenging than the issues she faced when her husband, Brian, fell ill while in Greece

Valerie and Brian Cox. Photo: Steve Humphreys
Valerie and Brian Cox. Photo: Steve Humphreys

When Brian Cox first met Valerie Fitzpatrick, he was busy forging a career in education, while she was working for the Irish charity Gorta. "I liked everything about her from the word go," says Brian. Given what happened to him much later in life, he might well thank his lucky stars that he fell for this bright, determined woman.

Ironically, their families were so opposed to a union between Valerie, then 22, and 30-year-old Brian, that they were still trying to dissuade them from marrying on their wedding day.

Thankfully, they failed dismally. Following the ceremony in 1974, the newlyweds set off in a VW Beetle, and began what would be just one of many adventures in their colourful life together, not least being the arrival of their children - Brian, a buyer for Dunnes Stores; Emily, who works in PR; Eoin, a garda; Maeve, a barrister; and Aengus, a journalist.

One of Brian's most noticeable traits is his love of things German. As a student, he spent time there - even working in an abattoir - to fund his studies at home. So in 1989,when the Berlin Wall began to crumble, he was asked to report on the situation for the Irish Department of Education. His family went with him.

"The kids had little hammers, for chipping at the Wall," says Valerie. "Brian, our eldest, being entrepreneurial, used to rent out his hammer to American tourists."

Over a period of 40 years, Brian (Senior) worked as an educator, including a significant period as a teacher at Notre Dame des Missions in Churchtown, Dublin. Meanwhile, Valerie, who had achieved an English degree from TCD, while rearing her children, worked for The Wicklow People, Independent News & Media and RTE. Four years ago, she completed an MSc in End of Life Ethics at UCC.

In 2016, Valerie and Brian became volunteers at a refugee camp on the Greek island of Chios. Then, just before Easter 2016, Brian fell ill. Two days later, he couldn't even stand. Doctors at the island's small hospital thought he'd had had a stroke; Valerie wasn't convinced - he seemed too alert. However, a few days later, he had a massive seizure, became unconscious, and was put on a ventilator in a private room. "That's what passed for ICU," says Valerie. "In spite of the difficulties, the staff and patients were lovely."

Fortunately, the couple had travel insurance on top of their usual medical cover. Valerie contacted Laya Healthcare, and soon efforts were being made to move Brian. Following initial logistical problems, he was transported by air-ambulance to Athens, and then on to the nearby private Hygeia Hospital.

Within hours, they learned that Brian was suffering from a rare reaction to the herpes virus (HSV-1) - the same virus that causes cold sores. According to Valerie, in about four in a million cases the virus enters the brain, usually affecting the temporal lobes (memory and speech) and, less frequently, the frontal lobes (behaviour and emotions).

"Seizures, coma and even death can result from the disease," she explains. Doctors feared Brian wouldn't last that first night. Thankfully, he survived with the help of a team of highly experienced consultants, who were caring for him in a state-of-the-art ICU.

A month later, doctors began efforts to wake Brian, but initially without any success. At that point Valerie, and her to-ing and fro-ing children, were staying in a spacious apartment nearby.

Her sister Iris flew to her side, as did Dave Heffernan, a close friend, who was a lay minister in Cyprus. "He composed beautiful prayers for Brian," says Valerie. "We also heard that the refugees we'd been working with were praying to Allah for us. Many wonderful people back home were also lighting candles and saying Masses for us. We are so grateful to every single one."

Eventually, Brian was whisked in a Lear jet back to Dublin, and taken to ICU at St Vincent's University Hospital. And though he had displayed a few wakeful moments, he was still mostly comatose. So he was totally dependent on staff for all of his needs.

But eventually, he did begin to wake properly. At first, he couldn't move a muscle, but with a lot of intervention from physio and occupational therapists, as well as his own family and friends who drew up a dedicated roster, Brian began to take his first tentative steps.

His recovery was long and arduous. Valerie says it was one tough battle after another to get Brian the services he needed. Attempts were made to consign him to a nursing home - but the family absolutely refused to consider this. They were also told he couldn't go into rehab because he was over 65. This, in spite of the fact that he had suffered extensive muscle damage because he'd been in a coma so long.

"He had such a rare disease; there was no care path for someone like him," Valerie says, the frustration and anger still palpable. So the family searched the world for a rehabilitation centre for Brian, but in the end he got a place at Leopardstown Park Hospital (a former hospital for wounded soldiers), which has a small rehab unit.

"It was like bootcamp," says Valerie. "He had sessions morning, noon and night, and that's absolutely what he needed."

Thanks to that intense programme, 16 months after he first fell ill, Brian was able to go home. In spite of his ordeal, he is as bright, charming and witty as ever. "He is himself again," says Valerie, "and editing a book he had completed before he fell ill. He walks with the aid of a frame, but otherwise can do most things for himself."

It's been a long, hard road for Brian and the family. But what upsets Valerie most is the possibility that people may be marginalised because of their age.

"I hadn't realised how exhausting it could be to get fair treatment when you're over 65," she says. "The autonomy of the person is just whipped away. If people could be given the supports they need to be treated in their own homes, it would save the State a fortune, and we'd have much happier people."

She also believes that Brian's unexpected recovery was due to the unstinting support he got from his children, extended family and friends.

Watch this space for more news of Valerie Cox's latest career as an activist for people with disabilities, especially those of a more advanced age.

For more information, email Valerie Cox at valacox1@gmail.com

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