The following is text from a talk I gave at the Aoraki LIANZA AGM, when we were asked to share stories about librarianship.
My mum was many things. She retrained, like me, in her mid 40s, first getting school certificate and going on to becoming a kindergarten teacher here in Christchurch. Before then she had been a stay at home mum – but not a stay at home woman. When she got to London in the late 1950s the biggest town she had been in was Christchurch – and that had been passing through to board the ship that took her to Europe. Mum and Dad were from Southland – Dad from Gore, and mum from Mataura. They left as soon as they had the opportunity. In 1960 they bought a VW beetle, and drove it from London back to NZ – following what became the hippy trail: Yugoslavia, Persia, Afghanistan, India, over to Australia, and then to NZ.
She had a great sense of humour, and she was adventurous.
She was a smoker. She smoked all her life, until her late 50’s, when she stopped, so she had emphysema in her later years. It killed her in the end, and it caused a lot of health problems on the way.
The moment I want to talk about is after she had a mastectomy for breast cancer. She was pretty stoic about that: the recovery rates were good, and though she had breathing problems, she had a good life. She told me the worst thing she expected from having the mastectomy was going aqua jogging afterwards. I suggested a prosthesis, but her concern was more about the fact that unbalanced with only one boob she would just spin in the water.
After the operation she never wore a prosthesis when she went aquajogging.
A few months after the mastectomy her health started to go down hill. She couldn’t get enough oxygen into her bloodstream, and it got so bad she was admitted to the ICU.
I’m not sure if you’ve been in the ICU, but its an amazing place. Big screens, hooked up to sensors had all of mums vital signs measured in real time. A nurse was with her all the time. She wasn’t getting better. I called my Brother to come down from Hamilton, and we took turns sitting with her reading Alexander McCall Smith books about generously proportioned women who were adventurous and brave. A year or two afterwards I was recognised by some of the ICU staff who had been listening as intently to the stories as we had been reading them. You forget that you’re never alone in hospital.
The problem was oxygen. Mum just couldn’t get enough into her blood. She had been a smoker, and her lungs were damaged. She had been on courses of prednisone, and she even had a breathing thingy at home, a machine that humidified the air for her.
I walked into the ICU three or four days after she had been admitted, and the atmosphere had changed. Mum was looking a little better, and more responsive. The nurses seemed relieved. Some of the doctors took me aside and said that the problem hadn’t been with mum’s lungs after all. They were pretty certain it had been a bad reaction to herceptin – a very rare side effect from a normally really useful anti cancer drug she had been given to reduce the chance of relapse. Aas they were talking I looked over and saw a printed journal article lying beside mum’s notes. The article, the single one in the world, that talked about the side effect. The authors were German, and had published somewhere that had been picked up by Ovid.
Someone, one of the ICU doctors maybe, and done some research and looked up mum’s symptoms and history. And they found the answer.
In Dunedin the University Medical Library and the part of the hospital the ICU are in are connected over a street by a bridge. I remember thinking that maybe someone in the library had helped, I knew they often did. I thought about the system that means they could find the article, the databases and the search tools, and the digital literacy required, and I thought, I want to be part of that. I want to help. I want to be a tiny part of the system that means that someone else’s mum gets a diagnosis, or a treatment, or at least some comfort from knowing what’s going on.
A few years later I was given the opportunity to retrain, and like my mum, I took it. Now I have the privilege to work with people who believe in open access to information, in making the results of all medical trials available. Sometimes people think I’m a bit predictable when it comes to the solutions for fixing the currently broken scholarly publishing business model. That’s OK. But I don’t come from some ivory tower position. Its because that open access saved my mum’s life. She died a few years later, from the trouble with her lungs. She’d be proud of what I’m doing now.