“Everybody out there is winging it to some degree, of this we can be pretty sure.” ― Amanda Palmer
After bringing the Jay Knight prints home from Sydney, I packed them into a box and put it in a corner of my room.
"That can't be it," I thought. "Is this it?"
Now that I had the prints, I was keen to show them somewhere in Melbourne, The only problem was that I had a serious lack of funds and connections, so finding a venue was going to be tough.
I tried pushing the idea of a Melbourne exhibition to the back of my mind, but, having to look at the box of prints everyday just made me want to think harder about where I could hold a local show.
After writing my final blog post about Head On, I was looking at photos of the prints at Sydney Hospital. And then it hit me.
"Why don't you ask Melbourne Hospital if they have a space you can put the prints?"
Of course, why was I trying to make it hard for myself. Plus, Jay had spent the first two months of his treatment at The Royal Melbourne Hospital, it seemed like a nice connection for the exhibition.
I emailed the communications department and explained about the project, and asked if they had anywhere suitable.
"Yes. We have a dedicated area for art exhibitions. It's free in four weeks, does that suit you?"
The prints hung at The Royal Melbourne from 27 June — 18 July, and we had a special opening event in the first week. It was so great to share the experience with Jay and Jo, and all of our friends who weren't able to make it to Sydney.
Having already done one exhibition, there were a few things that were easier. But, because it was a new venue, there were a few new problems that I had to overcome. I'm looking forward to developing my knowledge further with my next exhibition (whenever that may be).
For now, here are some photos from the show at the The Royal Melbourne Hospital.
“The feeling is less like an ending than just another starting point.” ― Chuck Palahniuk
I travelled back to Sydney over the weekend to a) see if my Head On exhibition prints were still standing, and b) if they were, take them down and bring them back to Melbourne.
The Head On Photo Festival has been a bittersweet experience for me. The Rebuilding Jay Knight exhibition was my first solo show, so there is a natural amount of excitement that came with that. There was also the added satisfaction of knowing that my exhibition had to be accepted — my images were reviewed by a panel of experienced professionals who deemed them worthy of inclusion in the festival. I can't deny I enjoyed the feeling of validation it generated.
But, the exhibition was in Sydney. The prints were up for three weeks, and, apart from brief moments on the first and last weekend, I didn't really get to experience it. Also, considering the content of the exhibition is so personal, it would have been nice if more of Jay and my friends could have been there to see it.
But enough belly-aching, these are just lessons that will help improve the quality, and my enjoyment, of my next exhibition. For now I'm happy that I just finished my first solo show!
Here's a summary of what happened on my last weekend in Sydney.
1. Artist and subject talk.
Jay joined me on the final weekend for an 'artist and subject talk' about the project. I have no embarrassment in saying that the talk was a big fat failure!
While I tried my best to publicise the event, my network in Sydney is non-existent, and I failed to achieve any traction with the outlets I contacted.
Fortunately, Jay was staying with his cousin and her family, and they insisted we do the talk anyway. Here's a photo of Jay doing his thing.
2. Time for inspiration
After the talk on Friday, I had to wait until Sunday to take the prints down. This gave me a chance to see some of the other Head On exhibitions, and check out the World Press Photo exhibition at the Library.
I walked all over the city to see different exhibitions, and took my camera with me so I could practice a bit of street photography. This is something I used to do regularly, but had let slip due to the terrible excuse of 'busyness'.
It felt good to be out taking photos for the hell of it. A few of my favourites are below.
3. Goodbye Sydney
On Sunday I went to the hospital and took down the prints. They were surprisingly simple to take off, but not easy. The gaffa tape/double sided tap combo proved to be extremely strong, and the only way I could get the prints off was to yank them off with brute force. I'm sure if I'd taken a moment to think about it I could have come up with a more graceful way to remove them, but this was the quickest. It was also the most entertaining, especially for the people waiting in emergency who watched me spend the better part of an hour wrestling my prints off the wall.
Despite the speed at which I took the prints down, I left the hospital behind schedule, and had to hustle if I was going to make my flight on time. I rushed up to Hyde Park to jump on the train at St James Station, and was stopped dead in my tracks by the incredible light filtering through the trees. Despite my tight time schedule, my inner photographer made me stop and take a few photos. It was a nice way to conclude the end of my weekend, and my Head On experience.
“Do what you can, with what you have, where you are.”
― Theodore Roosevelt
1. The prints
Before I talk about the exhibition I have to send out a big thank you to David Johns and the team at Fitzroy Stretches for doing such a great job of the prints. My outdoor exhibition posed a number of problems, and Fitzroy Stretches offered me some fantastic solutions without compromising quality.
I picked up my prints on Tuesday, along with my cut-to-size gatorboard, and mounted everything on Wednesday. The self-adhesive canvas came in very handy, all that was needed was a little trim.
If you have any printing needs, you can check out Fitzroy Stretches here http://fitzroystretches.com/
2. The exhibition is open!
I flew to Sydney first thing on Friday morning, with my mounted prints, and met my buddy Riccardo at the hospital. Ric studied with me at RMIT and had conveniently moved back to Sydney the week before the exhibition opened. Here he is putting a print on the wall.
It took us a couple of hours to get the prints up, and it was SUCH A RELIEF when we finished. The double sided-tape was solid, and for extra staying power we put gaffa tape on the sandstone first. I'm confident that the prints will still be there when I return to take them down in three weeks. A big thank you to Ric for holding my hand through the whole thing (and making sure I didn't take short cuts when I lost interest in the last 30 minutes).
The exhibition isn't perfect, but, as my first solo show, that was always to be expected. This has been a valuable learning experience and I'm looking forward to improving on what I've done here for my next exhibition.
With the prints up on the wall, I've spent the rest of the weekend in Sydney with family and friends who had also travelled to see the Head On Photo Festival. It was really nice to celebrate the exhibition with everyone, particularly my family who came over just for my show.
3. Thank you!
I'd like to acknowledge and thank everyone who has supported me during the organisation of the exhibition.
In particular, thank you to: Mum and Dad, Jess and Judd, Rob Gale and Jessie DiBlasi, Jay and Jo, Ellen Parker, Riccardo Raiti, Fitzroy Stretches, Laetitia Shand, Ruth Wilson, Daniel Bennett, Amanda Jones, Anna Bamford, Ron Seidl, Guy Little, Rebeccah O'Halloran, Pam Nichols,Natasha and Marcus, Caroline Wallin, Jeff Faris, Ray Bisson, Lauren Wise, Mark Sorrell, Alex Horwood, Kate James, Meg James, Renee Hill, Stephanie McCorkelle, Harr Chen, Gavin and Vicki, Louise Weigall, Einat Maman, Sarah Pestrucci, Danielle Conlan, Marie Eon, Xiaoye Lan, Linda Forsberg, Christina Redlich, Melita Chagas, Carryn Bertram, and Syed Anwar.
“Well," said Pooh, "what I like best..." and then he had to stop and think. Because although eating honey was a very good thing to do, there was a moment just before you began to eat it which was better than when you were, but he didn't know what it was called.” ― A.A. Milne, Winnie-the-Pooh
After the flurry of activity last week, this will be a short update (I'll pretend not to hear your sighs of relief). I've worked hard on the exhibition over the past five weeks, and majority of the work is done. All that's left to do is pick up my prints, get them to Sydney safely, stick them on the Gatorboard, and put them up at the hospital.
Holding an exhibition in a different state has been a bigger challenge than expected. If the venue was in Melbourne I'd be able to pop in every week and test different hanging methods, but a weekly flight to Sydney was out of the question.
I still have a few concerns about sticking the prints to the sandstone walls, but when it comes to hanging I'll be heading to Sydney with a plan A, B, and C, which will hopefully cover all my bases. Which brings me to an exciting delivery I received this week...
1. Introducing my industrial-strength permanent outdoor mounting tape!
I specially ordered a 10 metre roll of this stuff from California. Before my trip to Sydney I bought a two metre roll from Bunnings for $10.95 (pictured on the right), my order from the U.S. (pictured on the left) cost me $32.90 (including 12.95 postage). Bunnings must be making one hell of a profit!
Sticking my mounted prints to the sandstone walls is plan A.
I'm a little worried about the grip of the tape on the walls, so plan B is to adhere contact to the sandstone wall first to create a smooth surface for the tape to stick to. I'm confident that this will hold for the three week exhibition.
If that doesn't work, plan C is to stick the prints directly onto the sandstone, which I know will hold but will render my prints useless by the end of the exhibition. This is my absolute last resort.
2. Enjoying the lead-up
With most of the planning over, I've been left with a lot of time to enjoy the anticipation of holding my first solo exhibition. From the experience of my graduate group show, the reality of an exhibition isn't as exciting as what's built-up in your imagination the weeks prior to it, so I'm allowing myself to revel in my expectations, and the satisfaction that I've done everything I can to make the show a success (whatever that means).
3. More Jay filming
I sat down this week and reviewed a two hour interview I recorded with Jaylo last Friday. The more I shoot the documentary, the more I realise Jay's story deserves better than my amateur film-making skills (maybe Tara Brown and her team — they're free at the moment, right?). I'm sticking with it though, and will hopefully end up with something that people can connect with.
In the mean time, here's a minute from the interview where Jay talks about not being able to find a park at the Royal Melbourne when he first noticed his symptoms.
And that's it! The next update will be much more exciting because the exhibition will be up!
On Friday I'll be sending an email to everyone who contributed to the fundraising campaign with a preview of what the exhibition looks like (considering you guys are the ones who paid for it). On Sunday I'll have the regular update with photos of the exhibition and news about the Head On Photo Festival.
"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...
“There is nothing better than a friend, unless it is a friend with chocolate.” ― Linda Grayson
Mmmm, chocolate. In the context of this blog post the above quote doesn't refer to actual chocolate, though that usually solves most of my problems. It's inclusion refers to my first point of update on the Rebuilding Jay Knight Head On Exhibition...
1. Fundraising launch
I launched a fundraising campaign this week to help alleviate the pressure of my ever-growing exhibition costs (more about that later), and thanks to your generosity I’ve already achieved over 50% of my target! That’s incredible!
It’s very humbling to have such amazing support from my friends and family; your contributions mean I no longer have to have an awkward conversation with my landlord about where this month’s rent went.
It also allows me to present myself in a more professional way at the Head On Festival, which will help raise my profile as a serious photographer person lady (I'm still working on the wording for my business cards).
So: thank you. I am extremely grateful for every dollar donated so far.
The campaign finishes on Friday 15 April (or Thursday for my international friends). If you’d like to help take me closer to my goal, just go to https://igg.me/at/gbsheadon, pick your perk, and click ‘contribute’.
2. Budget update
After seeking a proper quote for my exhibition prints, my expenses increased this week by a significant amount. My travel costs also increased after checking available flights that fit in with my timeline.
Geeeeez, can’t a girl catch a break?
I did a total inventory of the damage, the updated figures are below.
Exhibition prints $1300
Return airfares Melbourne to Sydney (x 2) $400
Accommodation (x 4 nights) $400
Total: $2,500 (that’s $700 more than what I calculated last week...sheesh)
This kind of news would usually see me immediately curled up in the foetal position, but the early success of the fundraising campaign means I should be able to absorb these increases.
FYI: I'm saying yes to any kind of photographic work at the moment — assisting or shooting. If you know anyone in the market for a serious photographer person lady, I'd appreciate you passing on my details.
3. I’m on the map!
The full Head On program was finally launched on their website this week, including my little exhibition. Click here to go to my Head On exhibition profile. Also, here’s a screenshot of ‘Rebuilding Jay Knigh’ on the Head On map (damn that character count).
4. Jay in the gym
Jay and I worked hard at his gym this week as we continued work on the documentary ‘Rebuilding Jay Knight — one year on’. Well, when I say we worked hard I really mean Jay worked hard (his new trainer Allan made sure of that!).
I spent most of the session sitting on the floor trying to hold my camera still (and failing miserably).
It’s been a year since I was in the gym with Jay, and it was so great to see the progress he’s made in that time. There's still a lot to do on the documentary, but I'm looking forward to bringing all of the audio and footage together and crafting it into a story.
That's it, amigos. Next week's update will be a big one — I will have chosen which images to exhibit, and ordered my prints (gulp). The fundraising campaign will have finished, and I will have picked up my postcards. I don't want to jinx myself, but I think this exhibition might actually happen!
**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.
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.
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.
Sharon first experienced her GBS symptoms on the 1st of April 2009. She calls it the worst April fool's joke she's ever gotten.
Sharon had a day off from her job as an optician for a scheduled doctors appointment. The doctor asked her when the last time she had a tetanus shot was. She couldn't recall, so he gave her one.
The next day Sharon woke up she was unable to walk or use her hands. It took doctors two and a half months to properly diagnose Sharon with GBS, eventually successfully identifying the condition after doing a spinal tap.
Sharon says those two months were hell: "In and out of Drs office's putting me on antibiotics, not knowing what to do for me. In and out of hospitals for tests and more tests, my health was deteriorating. I was throwing up from the antibiotics, had diarrhea C-Diff (Clostridium difficile). low blood pressure. I was passing out all the time. I couldn't eat, the smell of food made me sick. I actually could taste hormones and antibiotics in the foods. My feet and hands hurt so badly. The mid section of my body is where everything settled. I have incontinence and it affected my female parts."
Following her diagnosis, Sharon was started on IVIG treatments — Intravenous (IV) immunoglobulin (Ig) — a common treatment for disorders of the immune system.
She became a resident at two specialised Rehabilitation Nursing homes; "Living with old people being so young wasn't much fun. I was in a wheelchair til I advanced to my walker. I lost fifty plus lbs. The smell of food was unbearable. Fresh fruit, cheerio's, ensure drinks and one-fourth of an eggo was my menu. The lowest my blood pressure got to was 46/28 — that's unheard of. I was on anti-anxiety, depression meds, I cried all the time. The weakness and tiredness took over. My feet hurt so much I wore special aloe socks. My feet were so sensitive, that the sheets on the bed felt like they were razor blades cutting my toes."
Sharon broke her foot when she collapsed one day and landed crushing her ankle. She required surgery to insert plates and screws. Her appendix also became inflamed and needed emergency surgery, and on another occasion Sharon ended up in the the hospital for seven days because she was having difficulty breathing. She was put onto oxygen and breathing treatments and developed asthma. She had an interstem device installed in her hip so she could urinate, but it became infected it needed to be removed. On top of all of that she also started have reproductive problems, and had a complete hysterectomy.
"Here I am today to tell my story, with still a lot of residual side effects. I'm unable to work — I loved my job too. I've got divorced since I became sick, and I lost my Mom to cancer. I'm now living at home with my Dad."
“If it weren't for the last minute, nothing would get done.” ― Rita Mae Brown
I found out about my acceptance to the Head On Photo Festival four months ago, but, much like studying for a major exam, I’ve only just started doing any real work to prepare for it. In my defence, it took three months to confirm at venue. There wasn’t much I could do before that.
I didn’t hold much hope of finding a venue that met my requirements (in a central location at no cost), so I was rapt when I found a home for my exhibition at the Sydney Eye Hospital.
After announcing the exhibition to the world on social media I realised I needed to give myself a kick in the butt and organise it, otherwise I'd end up slapping prints on the wall any which way and it would end up looking like a grade three school project.
I’m a complete novice at this kind of stuff, but I’m hoping for something a bit more polished than blue tack.
At the start of the week I sat down and wrote a list of tasks that needed to be done. This is what it looked like...
1. Inspect my exhibition space
The most important action for the week was a trip to Sydney to see and measure my exhibition space. Carisa, my contact at the hospital, said that the area was ‘partially outside’, so I needed to know exactly how much was outside, what implications that had for my prints, and how I would hang them.
I flew to Sydney on Thursday, and after an hour of tourist time I went up to the hospital to checkout where my exhibition would be. The location is fantastic — close to Circular Quay, major train stations, and key Head On venues like the Museum and Library. Here are some photos to show you where it is and what it will look like.
That's where my exhibition will be. Pretty cool, right?!
The awesome things about the space are the amount of foot traffic that goes by, how visible it is, and the fantastic location. The challenges with the space are that it’s completely exposed to harsh sun and rain, the hanging surface is sandstone that I can’t drill into, and I’ll need to direct people to it from Macquarie St.
A couple of problems to add to my to-do list for this week.
2. Poster and postcard design
I haven’t been to many photography festivals, but at the ones I’ve been to the photographers all had posters and postcards, so I think these are very important things for me to have in order to look like I know what I’m doing.
I drafted a couple of designs and sent them to Lauran (correct spelling) at Head On. She approved them. Now I can go and get them printed. I’m not sure where I'll put the posters, or who I'll give the postcards to, but I feel very professional and important for having organised them.
3. Post Judy Teys GBS story
After Jay’s story was published in The Big Issue, I received an email from a lovely woman called Judy Teys who suffered GBS in 2007. Judy shared her GBS story with Jay and I, and she agreed to let me publish it on the blog in the lead up to the exhibition.
You can read Judy’s story here
4. Start filming for Jay 'one year on' videos
When the exhibition opens, it will be exactly one year since Jay left the rehabilitation centre. In that time he’s made a lot of progress; walking unassisted, using his hands, and returning to work part-time. I want to document the improvements Jay has made since the end of the book, and the workarounds he's come up with to the problems he's still having.
I decided to use video because a lot of Jay's story revolves around motion. I started the project recently by filming Jay doing simple tasks around his house. To give you an idea, here’s some sample footage of Jay making a cup of tea (shout out to the awesome Susan and Karl mug in Jay and Jo’s cupboard!). In the end product, the audio will be Jay talking about his experiences. For now I've added some music to hide the banter between Jay and I while we shot.
That’s it for this week. I’ll leave you with some footage of Circular Quay I took during my flying visit to Sydney. This entire blog post was meant to be in video form, but I quickly lost my enthusiasm for that. I think I've been watching too much Casey Neistat.
In 2007, Judith Teys was 59 years old, very healthy, married with a devoted husband of 38 years, two lovely children, grandchildren, and two dogs. She had a great group of family, friends, and neighbours and a job she loved. It was from this lovely life she was pulled out of overnight by Guillain-Barré syndrome (GBS).
On Monday the 3rd of April, 2007, Judy woke with a terrible pain in her left arm to her elbow, over the next four days the pain slowly spread through her body. She saw a number of doctors who advised she had a pinched nerve, and that she should go home. Her pain relief was gradually upgraded from nurofen, to panadene forte, to valium, and endone. All with no effect. By Friday, Judy was finding it hard to stand.
On Saturday morning Judy swung her legs over the side of her bed to get up, but fell instantly to the floor. She had no strength in her arms or legs to push herself back up, and was rushed to hospital by her husband.
Judy was x-rayed, had blood taken, put in the ICU, and had a catheter inserted. Several doctors were trying to diagnose her when a neurologist was called in. He asked Judy five questions, said she had GBS, and ordered a transfusion of Intragam (a blood plasma product). Judy had five, three-hour transfusions over five days.
After eight days in the ICU, Judy was taken to a private room where she lay paralysed from the chin down. She spoke with a whisper, taking a gasp of air between each word. She had lost all sense of taste, hated the smell of tea and coffee, and no interest in food. Everyday Judy’s husband fed her jelly, custard and Sustagen drinks, but it wasn’t enough to prevent her losing 10 kilos in the first month of her illness.
As she was completely immobile, Judy had to be hoisted in and out of bed, showered by someone else, and turned regularly to avoid bedsores. Sometimes these actions were comfortable, and sometimes they were very painful. As she lay paralysed in her bed Judy got quite hot, and rotated six wet face cloths over her face and thighs. Most nurses were great and kept wetting the face cloths for her, however one thought it was ‘not necessary’ and refused to – making Judy wait until she had visitors.
Toward the end of April Judy moved to a rehabilitation hospital at Mt Olivet for more specialised care, which is where she stayed for 23 weeks. She went to occupational therapy each morning, 5 days per week to relearn how to hold a spoon, pickup sticks, open pegs, do jigsaw puzzles, and play with plasticine. In later months she would learn how to hold a pen and to try to write, and cook biscuits and pikelets.
Throughout her time at Mt Olivet, Judy’s nerve endings were repairing constantly and she felt unusual sensations throughout her body that she describes as wriggling under her skin.
Judy’s voice slowly came back after weeks of speech therapy. At first she managed to talk without gasping, then spoke in a high-pitched like she was on helium gas, next she adopted a deep, gravely voice, and finally in September she regained her own voice.
Judy stood up for the first time on the 19th of July — four months after her diagnosis. Her husband had to buy shoes two sizes bigger to accommodate her walking splints and the fact that her feet were still very swollen and painful. She also wore ‘moon boots’ to bed each night for two months to correct her 'foot drop'. She slowly graduated to a rollator, then an aluminium frame, and a walker.
Judy is thankful to the dozens of physio patients she met during her stay who helped her get through the daily highs and lows. They provided an internal support system, and gave each other advice and criticism, encouragement and congratulations. Discussion in the dining room consisted of daily bowel successes or failures, and what the doctors, nurses or physios should or should not be doing. Judy especially thanks the many different patients who sat next to her at meal times, many between 80 and 90 years of age, who helped by cutting up her food, holding her cup, adding salt and pepper, and picking her cutlery up off the floor.
Judy had her exit appointment from the hospital on the 30th of October, 2007. In November she stopped using her walking stick, and was able to do light housework, walk her dogs (one at a time), and got her drivers licence back. By January 2008, despite still feeling pins and needles in her feet, Judy was able to return to work one day per week.
In April 2009, two years after her illness started, Judy had increased her work load to three days per week, could walk both her dogs, and get out of the bath and put her stockings on without any help.
During her illness, Judy says that the GBS and CIDP Support Group of south east Queensland was of great help. Click here to visit their website.
Like most people, I hadn't heard of GBS until someone I knew had it — my friend Jay. This is his story.
One evening in July 2014, Jay opened his back door and whistled for his dog, Riley. When he couldn't make a sound he though it was a bit strange, but he carried on with his evening and didn't think too much more about it.
Jay woke up the next day and sat at his dining table to eat his breakfast. He took in a mouthful of his soggy Weet-Bix and started chewing, he tried to swallow but couldn't. Drinking was also a challenge.
By that evening Jay was in a hospital bed in the neurology ward at Melbourne Hospital. His breathing was laboured and his legs were starting to weaken. Whatever had prevented him from whistling for Riley the night before was spreading through his body paralysing his muscles.
The following week Jay was diagnosed with GBS. At this point he was completely paralysed, and was transferred to the Intensive Care Unit for close monitoring. Unable to breathe or eat by himself, he had a tube inserted through his trachea connected to a machine that breathed for him, and a feeding tube inserted into his nose.
Jay spent the next four months recovering in hospitals — until he had enough strength to breathe by himself. From hospital he was moved to to the Royal Talbot Rehabilitation Centre to keep building strength and learn how to walk, talk, feed himself, and do many other daily tasks we take for granted.
While Jay was in rehabilitation, I was studying photography. My biggest assignment at the start of 2015 was a documentary book — I had ten weeks to shoot it and it had to follow an interesting story.
After visiting Jay a few times at his rehabilitation centre and seeing the progress he was making I asked if he would be open to having his journey documented. He agreed. We started shooting at the beginning of March 2015 and finished on the 27th of April — the day Jay moved back home.
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
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 email@example.com with the subject line 'Let's take GBS head on!'.