Photosensitivity is a rare condition that, if you haven’t heard of it, sounds like something out of science fiction.
The sensation of sunshine causes the skin to break out in a blistering rash. Once any hint of ultraviolet radiation is gone, the rash fades within several hours. But while it is present, exposed skin becomes red and bumpy, itchy, and painful.
The disease is little studied or understood, and while there are ways of managing the condition and lessening the symptoms – there is no cure.
Sufferers are essentially allergic to the sun.
Photosensitivity is an intriguing medical anomaly – but for Launceston’s Eliana Robinson, it is her everyday life.
She jokes that one day, she will be able to write a great vampire novel.
“People could write me off as being a complete vampire fanatic,” she said.
“Because I have to live in darkness. And I burn in sunlight.
“It’s a bit of a romantic take on the condition – and it’s great research for if I write paranormal romances. Like, I’ve really got the lifestyle down pat.”
For many years, Ms Robinson was forced to cover herself up completely – wrapped from head to toe in protective fabric.
After long-term desensitising treatments that teach the skin not to see sunlight as an enemy, she no longer has to hide her face when she goes outside – even though the light still causes her to feel fatigued and uncomfortable.
Doctors have told her she won’t ever be able to lose the thick, dark glasses that reduce the pain in her eyes. She is also still extraordinarily sensitive to temperature: fluctuating wildly between uncontrollable cold shivering and a feeling of burning up.
Short of a miraculous advance in scientific understanding, she will never be completely – as she puts it – normal.
So bearing her daunting inventory of health problems in mind, what she is in the middle of doing may seem like madness.
Ms Robinson is undertaking a two-week solo walk from Launceston to Hobart, raising money for trauma support service Enterprising Aardvark.
She knows the risks. But Ms Robinson has something to prove.
“I was at home, watching the Project, and there have been all these stories about people doing something like this – walking across the country or across a state for their causes,” she said.
“And I thought, maybe I could do something like that.
“Walking is something I can still actually do. I wanted to look at what I still could do, instead of constantly being told what I can’t do – even within my own mind.
“I really wanted to do something that would encourage me to get off the couch, with some sense of purpose.
“I figured, I might feel better about myself after this walk, and I also might be able to make other people’s lives better as well.”
Ms Robinson developed photosensitivity through a series of interweaving health issues that she calls “a best friends club filled with the worst people you could ever be friends with”.
She has dipped in and out of ill health since birth, due to an autoimmune disease that weakens her organs and creates a litany of other symptoms. It causes her to fall ill remarkably easily: most recently, with a double-lung infection.
It was the autoimmune disease that made her susceptible to the water-borne illness that she came down with when she was 17, while swimming in Queensland. And it was a reaction to medication she was taking for that illness that caused her photosensitivity.
Her life so far has been a series of complex, interrelated conditions that make the simplest of activities exceedingly difficult. And now, she plans to spend a minimum of two weeks outside, in the elements, undertaking strenuous exercise, alone.
But Ms Robinson said she would rather put up with the pain than spend another minute inside in the dark.
“I’ve got things I want to do,” she said.
“And that’s why this walk is so important to me, because it’s going to take a lot of personal strength and personal endurance to get past the fact that it’s going to hurt like heck.”
Throughout her 29 years struggling with her health, Ms Robinson has found refuge in pop culture.
She loves the Cressida Cowell series How To Train Your Dragon.
“People make fun of me for loving dragons as an adult, but the woman who wrote the books is like 50,” she said, with a smirk.
She writes fan faction online, and designs furniture based on her favourite sets in films.
In a blog, she records her thoughts about the epic stories and worlds she devours – the fantasy quests where outsiders prove their worth.
“[It’s] a reminder of fun, colour and courage,” she wrote, about How To Train Your Dragon. “Possibilities and acceptance, inspiration and familiarity.”
“I’m still looking for my New Berk,” she wrote once in a period of homelessness, referring to the dragon-friendly utopia in the third How to Train Your Dragon movie.
Homelessness and poverty have been side-effects of Ms Robinson’s illness. She has struggled to find an employer that would hire someone so unusual-looking, and has spent her adult life scraping by on Centrelink payments. She wants a job, but has found workplaces are reluctant to take on someone with ongoing health issues.
It’s a state of affairs that is cruel, but not unusual.
The unemployment rate for people with a disability in Australia is double the general rate – only a quarter of people with a profound disability are employed. Forty-five per cent of those with a disability in Australia are living either near or below the poverty line. That’s more than double the OECD average, and out of the 27 OECD countries, Australia ranks at the very bottom for the relative income of people with a disability.
Here’s the Australian Human Rights Commission: “People with disabilities are more likely to experience poverty, live in poor quality or insecure housing and have low levels of education. They are often socially isolated, with fewer opportunities to take part in community life.”
That’s been the case for Ms Robinson for her whole life, and she’s sick of it.
Walking from Launceston to Hobart in spite of her personal barriers seems completely crazy – but the long-distance walk is her own epic quest.
It’s her own hero’s journey: an opportunity to prove her worth, like the characters in the stories she loves.
“Poverty and disability both have these very tight chains around me, and I want to break the both of them,” she said.
“I know that financially, this walk isn’t going to change anything. But I’m hoping to actually use it as a bit of accreditation, like in my CV – to show employers that are disinclined to believe that I can do anything because of my disability.
“If I can do this, then clearly I can stack boxes. You know?”
There is a line in the song Speechless that she was listening to when she decided to attempt the walk: that talks about how you can’t choose when or how you’ll die, but you can choose how you’ll live your life up to that point.
“I can go days just locked in a room, like Rapunzel, going out of my mind,” she said.
“Then comes night time, when I can go out and feel normal.
“But everything’s closed and everyone’s in bed. There’s this isolation.
“And you start to think, I’m never going to do anything, I’m never going to be anything. And it starts to eat at you – like my illness. I start to feel like I just have to sit around and wait to die. But eventually I thought, nope. I don’t want to do that.”
So she’s setting out for Hobart.
- Donate to Eliana’s walk through GoFundMe, at gf.me/u/trnzpi
“I DID IT IM IN HOBART BROKE HOMELESS BUT I DID IT”.
Two weeks after setting out from Launceston and travelling on foot along the Midland Highway, sleeping in public bathrooms and staying up all night in roadhouses, surviving on muesli bars and the goodwill of strangers, Eliana Robinson arrived at the Elizabeth Street Mall in Hobart and sent a text message. Exhausted, freezing, recovering from two bouts of hypothermia and with no home to go back to, the 29-year-old was elated.
She had set out with nothing more than a First Aid Kit, two bottles of water, a change of tights, a hi-vis raincoat, an umbrella, and ‘a couple of hundred muesli bars’: meagre belongings to solely rely on for two weeks in the elements. But the goodwill of others ensured she arrived. Eliana found – for the first time in her life – that the kindness of strangers emerges if given an opportunity.
Eliana’s walk raised $375 for support service Enterprizing Aardvark. Less than she hoped, but the journey was always more about proving her worth than raising money.
Eliana has a rare autoimmune condition that makes her essentially allergic to the sun, called photosensitivity. She is on Newstart despite the capability and desire to work, and has spent her life dipping in and out of homelessness. Her disability and poverty forever interlace; locking her out of a full life. She has frequently despaired, and describes spending days at a time alone in her room, in the dark.
Eliana’s endeavor – a mid-winter walk along a highway with meagre supplies and only partly-planned accommodation – would most likely not be recommended by most health professionals. (Even to someone who didn’t have a disorder that caused them to break out into painful blisters in sunlight.) But sensible or not, for Eliana, it was revolutionary.
She spent one night curled up inside a toilet cubicle at Perth. Four businesses sponsored her journey with a room: Ross Caravan Park, St Andrews Inn at Cleveland, Robinson Cottage at Oatlands, and the Glenorchy Best Western Motor Inn. She spent a hallucinatory night straining to stay awake and watching the football at Mood Food roadhouse at Kempton. Another hotel room was paid for on her behalf as a gift along the way. And she spent two nights in the family homes of strangers.
“Sometimes it went better than I thought it would,” Eliana said.
“Other times it went completely off the grid, and would have been quite disastrous if I hadn’t been helped.”
Jenny Sims overheard Eliana asking a shop assistant how she could get a lift to Oatlands. Eliana was running behind, and had to make her arranged accommodation check-in. Jenny dropped Eliana off, dropped her back the next morning so she could continue the walk from the same point, and then put her up when she reached Oatlands by foot.
“It’s not something we would normally do – we don’t pick up hitchhikers or that sort of thing,” Jenny said.
“It was a gut instinct, I suppose. She had her big backpack and her big black glasses – I just spoke up without even thinking.”
Jenny’s household tends toward meat-heavy dishes, but she cooked up a big meal of potato bake, chickpea stew, and green vegetables for the vegetarian guest. After dinner, she heard Eliana and Neil, her husband, giggling away to Monty Python, and a silly Western movie.
“She’s been on my mind a lot since – how people can slip through the gaps, and just be so, seemingly, unsupported,” she said.
“We’re not in a position to do a great deal, but you can’t leave somebody without a bed or without food. I don’t know exactly how she got into her situation; it seemed like all these different things compounded.
“She never complained once, she was very positive about the whole thing – she’s an impressive lady. I really hope somebody gives her an opportunity.”
Eliana had been walking in a thunderstorm for four hours when she met Keturah Matepi-Triffitt, David Triffitt, and their children Hannah, 10, Lydia, 9, Ezria, 5, and Judea, 4, who were driving past Bagdad to their home at Ellendale. They paid for a hotel room for her, and after she finished her walk, they came and picked her up and took them back to their home.
Eliana has since travelled back to Hobart to go to a video store closing down sale with the Triffitts: Mrs Matepi-Triffitt told her to consider them her own family.
“I think that meant a lot to her,” she said. “She isn’t in contact with her own family.”
Mrs Matepi-Triffitt said that God put Eliana in their path.
“She’s been an inspiration to us, really,” she said. “She’s a very clever young lady; ambitious, determined – when she sets her mind to something, she’s loyal to it.
“She’s very genuine, very honest: no shortcuts for Eliana. And the beautiful thing about Eliana is that she did this charity walk for the homeless and the needy when she’s lost her own accommodation.
“It is so courageous that she would set out and do this for others, when she is struggling with the same problem.”
As for Eliana, she said that before setting out on her walk, she didn’t believe that help, kindness or community spirit truly existed.
She sees small towns as being in a “help-each-other scenario”, as opposed to her experience of Launceston. For her next rental, she is looking at affordable places in George Town instead of the city.
Her walk also exposed her to a sense of adventure that she had only experienced second-hand before, through her favourite books and movies.
She came across cows “as big as a BMW”, and heard wallabies scurrying past in the dark. In Hobart, she enjoyed feeding seagulls at a bus stop. The walk was the first time she had seen sheep; she herded a flock off the road somewhere past Oatlands. “It was so cool, it was a mum and a dad and a bunch of little lambs, and they were so cute,” she said.
The roadkill she saw sickened her; she was terrified during her games of Russian roulette with passing trucks, and the sight of a beheaded deer made her throw up. But she loved the smell of the timber trucks; a smell which was entrancingly similar to a new book.
“Every time a wood truck went past, it was a cozy reminder of being at home in bed, reading my book,” she said. “That was a big surprise, I loved that one. It was a much more pleasant smell than the cattle trucks.”
In fact, the saddest part of the journey – during which she cheerfully admits she feared she would die from cold and exhaustion more than once – is that it’s over.
“It was difficult, it was tough, it was gory, but it was worth doing,” she said. “I feel improved, and better, and stronger for doing it, both physically and emotionally.”
” I’m just sad now that it’s over with, and I have to come back to reality.
“Reality is so stark and caging that it can feel like the walk never happened – but when I step up and go ‘ow’, I’m like ‘no, it happened’. It’s nice having the blisters as a reminder.”