Guillain-Barrè syndrome

Two weeks 'til Head On

"It is not so much our friends' help that helps us, as the confidence of their help." — Epicurus

This week was a big one. With only two weeks until I hang the show, it was the last chance to order my prints so they'd be ready when I leave for Sydney. My exhibition is listed on the Head On website and in their hardcopy catalogue, so it would have been a bit awkward if people showed up to the Sydney Hospital and there weren't any photos on the walls. As you'll see later in the post, I managed to make my selection and get my butt to the printer to sort it all out.

Thanks to the fundraising campaign I was able to upgrade my prints, which brings me to 'official exhibition update point number one'...

1. Fundraising campaign outcome

I launched the campaign to help decrease the overwhelm of my exhibition costs. I thought my target of $2,500 was ambitious, and if I raised enough to cover the cost of my prints it would be a success. Thanks to your generosity I reached my full target with a day to spare, this is amazing!

I can't find the words to express how grateful I am for your support, other than to say a heartfelt thank you to everyone who donated to my campaign. I'm looking forward to putting the show up in a couple of weeks and sharing it with you.

2. Exhibition prints ordered!

With the success of the fundraiser, I was able to walk confidently into the printer this week to order the prints I'll be showing in Sydney.

Up until now I'd been looking at printing on self-adhesive canvas to stick directly onto the sandstone, but that would mean I'd have to throw them out after Sydney — what a waste! Thanks to the fundraiser I was able to add Gatorboard to my order — a strong mounting board that my prints will be stuck to. This means I can bring the prints back to Melbourne to hold another exhibition (...once I've recovered from this one).

I was also able to pay the extra fee to have the prints sprayed with a sealant, making them more resistant to rain and UV damage (very important considering they'll be outside for three weeks!). 

It took me a while to choose the images that will be shown. To do this I made a scale diagram of the exhibition area which gave me an idea of how many prints I could put up and what size they should be. I found it hard to reducing a book of 50 images to a 13 image exhibition and still tell the story, so I just did the best I could within the restrictions.

The current layout and the exhibition location is below. The layout isn't final — if you have any constructive suggestions I'd be happy to hear them.

3. The postcards arrived!

I picked up my postcards this week. They look terrible, but they're here. The print quality isn't great — the image is a lot more contrasty than the original, and the highlights are well and truly blown. There's not much I can do about it now — I have 500 of the things and I'm not going to get them reprinted.

I'll be using about 40 of them to send to the folks who contributed to my fundraiser, and the rest will be coming to Sydney to throw around Head On venues and let people know about my little exhibition.

4. Jay at work

This week Jay and I did some filming at his office — my old office — which was fun because I got to catch up with a lot of old work mates. By the time I got there, all he had left to do for the day was write an email, so that's what I shot.

Afterwards we recorded the first part of an interview which will provide the foundation for the documentary. We were battling all sorts of noises during the interview — trains, motorbikes, school kids, and a chirpy birds. I haven't checked the audio yet, but my fingers are crossed that the occasional car engine isn't too distracting from Jay's incredible story.

Anyway, that's it for this week's update. I'll leave you with twenty seconds of Jay typing...

Rebuilding Jay Knight: Life after Guillain-Barre syndrome is a photo essay and book by Emma Murray.

See images from the series here.

Read the book here.

What is GBS?

Guillain-Barré syndrome (GBS) is a severe disorder in which the body's immune system attacks part of the peripheral nervous system.

Usually our immune system protects us from foreign material and invading organisms, however, in GBS the immune system starts to destroy parts of the peripheral nerves.

Initial symptoms of GBS include varying degrees of weakness or tingling sensations in the extremities (arms or legs). In rare cases the disorder starts at the top of the body, the first symptoms in this instance might be trouble chewing and swallowing.

As the disorder progresses these symptoms can escalate until certain muscles cannot be used at all. In severe cases the person will be almost totally paralysed — no use of arms or legs, extreme breathing difficulties, and unable to talk. Most patients reach their weakest point within the first two weeks.

The sudden and unexpected onset of GBS  can be devastating. Most sufferers spend upwards of three months in hospital and take up to a year to recover. Eighty to ninety per cent of patients make a full recovery, however for some the nerve damage is so severe they are left with permanent weakness, numbness and pain.

References and more information

Call for people affected by GBS

I'm currently looking for people affected by Guillain-Barrè syndrome who would like to share their story as part of an awareness campaign I'll be launching in March.

If you have suffered GBS, or someone close to you has, all you need to do to participate in the campaign is send me a written account of your GBS experience (1 — 2 pages), accompanied by some images before and after GBS affected your life (4 — 8 images).

Submissions are encouraged from people anywhere in the world. If you are living in the Australian cities of Melbourne, Hobart, or Sydney, I also would love the opportunity to meet with you to hear your story in person and take your portrait.

The campaign will aim to unite those affected by GBS, and bring more awareness about the illness to the wider community.

If you would like to be involved, please send your submissions to with the subject line 'Let's take GBS head on!'.