Imagine waking up every day with waves of fatigue rising through your body. Your muscles ache, you struggle to remember simple things or even hold a conversation; the smallest actions leave you exhausted. You spend your days in a different world, isolated from those around you. Yet nobody can see this invisible illness which can destroy the lives of those it invades.
“I try to describe the fatigue, I tell people it’s like maybe you physically walked really hard, then you stayed up for three days in a row, and then you got drunk, and then you didn’t sleep, and then you try to get behind the wheel of a car and drive,” said Bob Gawron. “It’s like every cell in your body is fatigued, it’s a dropping sensation. I’m fatigued all the time. It never stops.”
In 1989, aged 37, Gawron’s illness was triggered by an office renovation, which aggravated a chemical sensitivity which had been present since childhood.
“Over the course of six months I kept getting flu-like symptoms, and then this one time I got the flu and I just never recovered,” he said. “That initial level of illness was profound. Looking back at it I can’t even understand how I was able to work through that.”
Over the past twenty five years Gawron has experienced fluctuations in symptoms and varying degrees of severity. In the early years profound waves of fatigue were the most aggravating. Then it was brain fog, the cognitive symptom that can rob the ability to recall a name or focus on a conversation. Along with arthritic like symptoms, chemical sensitivity and intense muscle pains, the effects have been devastating.
For Gawron, the original diagnosis was considered an environmental illness, so in 2006 he spent three months at the Environmental Health Centre in Dallas. His time in the clinic saw a drastic improvement in his symptoms and allowed him to continue working for a further eight years. But those with M.E. cannot always live in a safe environment.
“I’m out there, I’m trying to survive financially,” said Gawron. “I worked for all my twenty five years of having this and I tried to do as much as I could in the normal world as possible.”
But life in the normal world is full of challenges. Finding the balance between your health and normality involves sacrifices. This can be work, friends, relationships and even family.
“I never got married because I just can’t be responsible in a relationship,” said Gawron. “I have to be responsible for myself. I’ve had long term relationships but at the end of the day I have to take care of myself.”
One of the greatest challenges is the social isolation that can arise from living with this illness, as a lack of awareness and understanding can leave you in the dark.
This October an online campaign arose for Canary in a Coal Mine, a documentary film seeking funding on Kickstarter. Through a series of YouTube videos and online posts, the world watched Jennifer Brea, M.E. patient, attempting something most of us could only imagine.
In the initial trailer for the documentary Brea explores the mystery surrounding CFS/M.E., the controversy and confusion, and the profound impact on those who are caught in the clutches of this invisible illness.
Brea, who is on indefinite medical leave from Harvard University, is joined by independent filmmaker Kiran Chitanvis. They portray a narrative which pulls the viewer into life with M.E, through Brea and other patients, each with their own story to tell.
Watching Brea staggering towards a vehicle, struggling to stand, collapsed and too exhausted, we see how this illness has infiltrated so much of her life and threatens the murky waters of an unknown future.
“As soon as I saw the video and I saw Jen [Brea], I knew in my gut that this was the right person to do something like this,” said Gawron. “It was the right moment for me to jump in and get involved as much as I could.”
Around the world thousands were struck by the campaign and the incredible real-life footage bringing our voices into the light. Like countless others, Gawron took an intuitive liking to Brea, sensing authenticity and credibility from a smart, young woman; someone with promise to pull of this impressive venture.
On October 25th, just three days and five hours after the campaign launched, Canary in a Coal Mine reached its first funding goal of $50,000. Overwhelmed with the incredible support, Brea and Chitanvis released another video, announcing plans to try and raise the entire film budget of $200,000 through Kickstarter.
The unprecedented support extended far beyond donations and fuelled a global following and online community. Even amongst the patient loop, a greater awareness and understanding was being developed.
“Before this campaign I never called myself M.E., I’d never even heard the term M.E., it was just chronic fatigue syndrome or environmental illness,” said Gawron. “This is the first time I’ve seen the whole spectrum of people and the different symptoms and severity they have.”
Around the world, patients are uniting to share their stories. The Canary in a Coal Mine campaign fuelled an uprising and demanded visibility for those who could often feel invisible.
Natalie Denise Davidson, aged 21 from the U.K., found out about Canary in a Coal Mine through social networks. She decided to support the campaign because of her own experiences of M.E. and the general lack of understanding which surrounds the illness.
“I think it’s frustrating to have an invisible illness because the false perception can be that you’re dramatizing or lazy,” Davidson said. “The only way to prevent other people going through the same thing is to raise awareness. Ignorance can only be remedied by education and I think in the current climate, film is a really effective way to educate.”
“I’ve been really impressed by the support behind the campaign, it’s shown how many people are in the same boat and I hope that helps boost morale for the many people still suffering,” she said. “It could affect absolutely anyone, and it’s the kindness and understanding of other people that makes it easier to get through, especially when there is no cure.”
Social networks, blogs and support groups have thrived with support for Canary in a Coal Mine, as those whose lives have been affected by this illness come together.
“I believe the documentary will help to raise awareness of this devastating illness and will allow the story of those who haven’t been heard until now to be shared at a large scale,” said Megan S, author of My Chronic Life Journey blog.
Jen Brea wrote that the decision to make Canary in a Coal Mine was made in one of the darkest moments of her life.
“I knew I had two choices: give up or try to wrest back my dignity and agency from this illness,” she said. “So I gambled my heart and my hopes on this project. Even though I have a deep belief in the power of visual storytelling, there was also a nagging fear that no one would care or understand the meaning of what I and so many others struggle with.”
On November 21st, with 37 hours to go until the end of the 30 day Kickstarter campaign, Canary in a Coal Mine reached their $200,000 goal. They thanked their backers for making miracles and helping to turn the worse thing into the most extraordinary, wonderful thing.
Their accolades have also included being voted IndieWire’s ‘Film of the Month’, a featured article in the Huffington Post, a celebrity tweet from Stephen Fry, interviews with Al Jazeera, and a Thunderclap reaching more than a million followers.
With the support and funding Canary in a Coal Mine needed, they can make a feature length documentary to truly be proud of that can change the face of M.E.
To those with CFS/M.E., this documentary is a promise for a future that doesn’t have to be lived in the dark. It offers hope for awareness and understanding.
“We have very painful and disabling illnesses yet we can’t get good health care or funding for research and treatments,” said online support page ‘MayTwelfth’, representing International CFS/M.E and Fibromyalgia Awareness Day. “If we don’t raise awareness for ourselves and raise money for research then it will never happen. We hope the film opens the eyes of some people and change starts to happen.”
By supporting the documentary, you are raising belief and acknowledgement. You are helping to reach those with the power and knowledge for research, those who could be able to find the answers that so many of us seek.
“Having acknowledgement means it has to be acknowledged in the medical science community,” said Gawron. “I think this has a chance to change perceptions and get people interested in figuring this out.”
As we unite to follow the inspirational journey of Jen Brea, and our online community comes alive with the whispers of fellow canaries, we watch with baited breathe to see how the rest of the world will react.