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.

Four weeks 'til Head On

**Note: I was listening to the Dirty Dancing soundtrack while writing this update, so this blog post doubles as a Head On update AND a fun game of 'find the Dirty Dancing references'. There are six in total, let me know if you find them all.**

"We have so much time and so little to do. Strike that. Reverse it." — Roald Dahl

Progress for the exhibition was slow this week — I spent most of it having the time of my life in Hobart sitting on my parents couch eating chocolate. But no one puts Baby in a corner, not even Baby herself, and I managed to get off my butt and take a few more steps towards making the exhibition a reality.

But first...

1. An exciting announcement!

I'll start with the good news, because that's more fun.

I’m happy to announce that, in addition to my exhibition at the Head On Photography Festival, I am a semi-finalist in the Head On Portrait Prize for my image ‘Uncle Jack at Marios’.

I didn’t quite make it as a finalist, so I won’t get to take part in the portrait exhibition….buuuuut my portrait of Jack will be included in a slideshow projected alongside the portrait exhibition at the Sydney Museum. So it will still be seen by the hungry eyes of Head On patrons, and I think that’s pretty great.

The portrait is part of my Human Family project, you can see more portraits from the series here.

Uncle Jack at Marios

2. Quotes for stuff

At the start of the week my budget for the exhibition was still made up of guesses (not even educated ones!), so it was time to put some concrete figures against my expenses. I'd be a fool to believe I could hand over my credit card and hope that everything turns out okay.

I sought quotes for printing the posters and postcards, as well as (gulp) what the exhibition itself will cost to print. Individually the figures weren’t too shocking, but I know that my total costs are starting to reach the absolute limit of what I can afford.

To figure out the total damage, it was time to do a budget…

3. Do a proper budget

At the moment I’m only working 2 — 3 days a week. Once I pay my rent and buy some lentils there isn’t much left over to put towards the exhibition, so I need to make every dollar count.

There are some expenses that are critical to my participation at Head On, like the cost of the prints, return airfares for the opening and closing weekends so I can put the prints up and take them down, plus accommodation.

Things like postcards and posters are nice to have, but aren’t essential, and will be taken off the list if they don’t fit in with what I can afford. This is what my final budget looks like:

  • Exhibition prints                               Big Bannar                  $700.00
  • Airfares (opening)                            Jetstar                         $100.00
  • Accommodation (opening)              TBC                             $150.00
  • Airfares (closing)                              Jetstar                         $100.00
  • Accommodation (closing)                TBC                             $150.00
  • Postcards (500)                                Kwik Kopy                  $194.76
  • Posters (20)                                      Officeworks                $179.00

Grand total                                                                           $1573.76

Ouch — that’s quite a hit!

At this stage it doesn’t look like the postcards or the posters are going to get printed, and hopefully I can find some crazy cheap sales for my flights and accommodation, which will bring the total cost down closer to the $1,000 mark. Fingers crossed, otherwise my credit card is about to experience parts of itself it didn’t know existed. Either way, I may need to do some fundraising in the near future to help cure this overload.

4. Post Sharon Ward’s GBS story

Sharon got in touch with me after I posted a callout for GBS survivors to share their story. Her devastating experience with the condition, and the other impacts it’s had on her life, really touched me.

You can read more about her GBS story here.

5. Create a media pack

The lovely folks at the Sydney Hospital are really supportive of the exhibition, and will be putting a media release out about it through their communications department.

I've written a few of these releases before, but they mainly concerned renewable energy projects. It’s much harder to write about your own work, and something that's personal (although some people at my old company seemed to have very close connections with the hydroelectric plant they worked on...).

I had a crack at writing my media release this week, but it needs more…umm...I'm not entirely sure. I’ll do some more research, and spend just a little bit longer coming up with some engaging copy about Rebuilding Jay Knight. My aim is to send it to the hospital and upload it to this website by next Sunday.

That’s it for this week. Stay tuned for next week’s update, when I’ll either have 90% of the exhibition planned, or I'll be announcing its cancellation. Fingers crossed it's the former. This post was considerably lacking in visual content, so I'll insert my current to-do list below.

On a side note, after finishing the Dirty Dancing soundtrack I've just realised that it DOESN'T include Solomon Burke's 'Cry to Me'. What? Surprising considering it was such a pivotal piece in the movie. I'll leave you with that important observation, and here's a link for your enjoyment.

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!'.