Briony Ankor is a 30-year-old previous PhD student who just four years ago was diagnosed with a largely mysterious and misunderstood condition known as narcolepsy.
She suffers from a chronic neurological disorder of excessive daytime sleepiness, paralysis, cataplexy and hallucinations and with nothing stopping her, she is taking on a 1200 kilometre, two month journey of the Heysen trail to raise funds for narcolepsy.
There was no exact moment when Briony decided ‘ I am going to take on the trail and raise money’, hiking is one of her interests and the trail was something she always wanted to do.
With a decision made in late March this year, she started organising the hike. Learning how to dehydrate meals and planning each stop day by day.
She says that in Australia there is a very limited range of treatment options and hopes that what she can fundraise monetary wise can help improve that situation, but also through word of mouth, continue to create awareness of the condition.
“I am supporting Narcolepsy Australia because in Australia we only have very limited range of treatment options available. For a lot of people after a year or two, they start loosing their efficacy”, she explained.
“I have always loved hiking and I guess it would be easy to say that I want to do the trail because I wanted to do it. In essence it is true but a big part of it was proving to myself that while I may be struggling on the work side of things, I can prove to myself that narcolepsy doesn’t defeat me. That I am better and stronger than it. I can still go and do awesome things, it may not be the direction that i thought my life was going to be going. But I can still do things that are a bit out there.”
We met Briony about half way into her walk in Crystal Brook, when she stopped for a rest day, around day 41 of her hike.
So far her body is managing incredibly well for the pressure and endurance it has been under over the past month and a bit. She says that coming into the challenge, she wanted to prove to her brain which tells her she can do things, that it is right. Yes she can in fact achieve them.
“The hardest aspect to deal with is the brain fog because I am very academic and driven, it has been hard to put it back to what I can do, compared to my brain saying ‘ you can do so much more, you have been able to so much in the past’”, she says.
Before Briony was diagnosed, she was studying geo-spacial science, surveying, mapping, cartography as well as doing a little bit of teaching and some environmental science.
The final points for Briony having to give up something so important to her was the disrupted night sleep. She explains that her body and brain was not being given enough time to rest, leaving her with an even worse result in the morning.
“One of the hardest issues I have found is the disrupted night time sleep. It means that we don’t get to the deep stages of sleep that you need to give your brain a break and give your body some rest. That tends to lead to some brain fog, confusion, forgetfulness”, she said.
“I don’t work full time anymore and only do as much as I can which is frustrating.”
Her condition has been kind to her throughout the walk, with her body so exhausted both mentally and physically, she enters a ‘zombie’ state, and once she has had dinner, she sleeps incredibly well.
She expected the typical blisters but has found that mentally as well she is travelling along well.
Along the 1,200 kilometres Briony has come across several other people on ventures similar to hers and she has decided to document her trip as she goes along.
“There have been donations from people I have never met. The other really cool part is being able to tell people about narcolepsy and that is a really big part of this, getting the awareness out about it.” Briony is expected to reach Parachilna on September 29.
The hike has been well thought out and Briony has had to be smart with her food and drink choices, ensuring she is consuming enough calories to keep her going but also has enough food to feed her each day.
The question she has received many times is how on earth is going to carry all her food for the whole trip, but she has been strategic and whenever she reaches a main town, she has a re-supply box waiting for her at the post office, filled with dehydrated meals and a lot of hot chocolate sachets.
“All my dinners are home cooked meals that I have dehydrated and vacuum packed. It is really good because I haven’t had a single dinner where I have been like ergh I have to eat this, it is more like ‘yeah I have nachos for dinner’.”
“Breakfast is usually two serves of porridge and two serves of hot chocolate. I have found that I am eating at least twice as much as I usually eat at home.”
Along the way generosity swept Briony off of her feet. She has been offered accommodation from friends of friends, family friends friend’s. She is incredibly grateful for everyone who has lent a hand along the way.
If you would like to donate to Briony’s walk, you can do so here.