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Do you believe in the power of community?

 

A Rare Community Connection

In Sickness and in Health

Ian and Meg Olsson have been together for 24 years. They are an impressive team; thoroughly likeable, social, active, and involved in their community, even after Ian’s retirement in 2001.

“To be accurate, I’ve had two retirements,” he said.

“My first retirement was in 2001, but I then started up a business with a friend and colleague.

“My second retirement was not on my terms. I had by this stage built a growing business, when in 2008 I started to notice that my health was deteriorating.

Meg was working at a fashion boutique when Ian’s health started to become a concern.

“I noticed that Ian was often very tired, and that he was quickly losing weight,” she said.

“I knew something pretty dramatic was happening.”

Ian was diagnosed with a rare blood disease called AL Amyloidosis in November 2008, but not without a long period of uncertainty and multiple tests.

“At that time it was estimated that AL Amyloidosis strikes about eight in a million people, with approximately 150 a year diagnosed in Australia,” Ian explains.

“Because this disease is so uncommon and the early symptoms are either non-specific or non-existent, we had no explanations for my failing health for years. It was in fact a relief when a kidney biopsy showed Amyloid deposits and we were finally able to put a name to the problem.

“AL Amyloidosis is a blood disease that currently has no known cause or cure. When I was finally diagnosed, I was given an initial prognosis of “six to nine months”.

“We simply did not accept this prognosis, and so we began to fight.”

The partnership of Meg and Ian was crucial throughout this time. With the diagnosis, the Olssons were afflicted with a disease without an existing community to provide support through difficult treatment and an uncertain future. At the beginning, they were each other’s best source of support.

“Ian was in hospital three weeks and at home two weeks throughout the first 12 months of treatment,” Meg said.

“I asked the nurses and doctors what I could do. When they tried to tell me there was nothing I could do, I knew that was not good enough!

“I started buying organic when possible, watching what we ate, and making everything from scratch.

“At one point, I felt Ian start to accept the diagnoses he had been given,” said Meg.

“I told him, ‘I’m not done with you yet’. He really heard me that day, and from that day on, Ian truly started to fight.”

The Olssons also drew on the support and kindness of their church, the Iona Community based in Sutton Forest in the Southern Highlands of NSW.

“The congregation all prayed for us, if there was anything they could do for us or to make Ian more comfortable, they would do it,” Meg said.

“One of the church family came and had coffee with me every week.

“I also had a very special friend who would meet me at 5:30 every morning, and we’d go for long walks, for two and a half or three hours.

“These walks would pass in comfortable silence, or we would chat. My friend had a way of talking that helped me see the world through the eyes of a child.

“She would point out dew drops on a spider web and imagine that the spider had had a party, and that they were the fairy lights. I found this perspective powerfully healing,” she said.

When they returned to Brisbane Ian and Meg quickly become involved with the Amyloidosis Support Group that operated in Brisbane under the auspices of the Leukaemia Foundation. The opportunity to meet other sufferers and hear from highly qualified speakers removed some of the “mystique” of the disease.

About 18 months ago, Ian, along with other sufferers of Amyloidosis and their carers, became involved with the Princess Alexandra (PA) Hospital Amyloidosis Centre which is part of the PA Research Foundation.

“We are able to raise funds specifically for Amyloidosis research and provide information (often to medical staff who know very little about Amyloidosis), and offer support to people diagnosed with Amyloidosis and their families.

“The Amyloidosis Research Centre gives us the feeling that one day, God willing, we will find a cure, but in the meantime the Support Group is there to makes us aware that we are not alone in our struggle.”

The Olssons are glad to report that Ian’s condition has abated, and though it’s not possible to say that anyone is ‘cured’ of AL Amyloidosis, or even ‘in remission’, their rejection of the initial diagnosis has resulted in Ian still being here today. Meg is also grateful for the strength she has found in her community.

“This experience has taught me that you’re never alone. That there are people out there, and to not be afraid to ask, because people are willing to give support,” she said.

“I’ve now been able to be there for someone who was in the position I was in eight years ago. I hope I am passing on that supportive community spirit that helped me through so much.”


Do you believe in the power of community? The Rainbow Neighbourhood: Creating Diverse and Inclusive Organisations event is coming to Fitzys Convention Centre in Logan on Saturday 20 April, 2016. To register, click here to visit our events page.