After three years of battling a seemingly phantom condition that had reduced his existence to one of crushing pain and fatigue, Daniel Chang-Bard simply had no fight left in him.
On Monday, May 28, 2012, at the age of 21, he ended his life.
Eileen Chang had lost her only son to a mysterious malady the medical world has only recently acknowledged as a legitimate condition. She knew she had to tell his story — their story — of a life suddenly derailed by a "suffering disease" and a health care system that seemed often ill-prepared to deal with it.
Chang, a patient safety coordinator at a Toronto health care facility, continues to take inspiration from the last words she heard from her son, just moments before his death.
That night, Daniel had phoned his mother from Montreal, where he and an aunt had been making preparations for a trip into the northern U.S. to seek new treatment therapies.
"He said, 'I'm just calling to say goodbye.' And so I thought, okay they're going to go on their journey into the States," Chang recalls. "But he kept on saying, 'I'm calling to say goodbye,' and then I realized what was going on."
Panic-stricken, Chang screamed at her boyfriend to get on the other phone. She recalls those seconds as like a waking nightmare. But all the while, up until that terrible moment when the line went dead, her boy's voice was in her ear, urging her to just keep on talking to him.
"And that's the message I give to the audiences no matter where I am, and especially through Patients for Patients Safety Canada, that you have to keep on talking about it," Chang says. "It's not about the story; it's about what we learn from the story."
Growing up in Toronto, Daniel had always been athletic and articulate, someone who loved music and defended the underdog.
"When he played soccer, he won the best sportsmanship award probably four or five times. By the third time, I went to a referee and I said, 'Excuse me, but I think you need to give it to someone else. Are you sure it's him?' And he said yes, and the reason being is if someone fell on the field or someone looked upset because a goal was scored against the team, he would go up and console that person. So that's the kind of person he was."
Daniel's troubles began close to his later years of high school, when he fell ill following a camping trip to Algonquin Park. Tests detected a water parasite in Daniel's digestive tract and he was placed on antibiotics. Looking back, and after reading literature based on Daniel's final diagnosis, Chang suspects that the parasite somehow compromised his system. Afterwards, he just wasn't able to fight off germs as well as he had before.
He started attending university in Montreal, but soon reported again feeling unwell.
"He said, 'Mom, I can't make it even to class without sleeping in my friend's dorm room.' " Chang recalls. "Then he started talking about symptoms, like having a sore throat, swollen glands, and feeling really feverish."
Chang's sister, who lived in Montreal, took Daniel under her wing. A fan of naturopathic medicine, she nursed him with chicken soup and rest until he rallied and was able to finish out the year. Still, he continued to feel sick, always nauseous. He told his mom he felt like he was getting the flu over and over again.
While at McGill that first year, Daniel had made plans with his girlfriend to travel to Peru for a short while to volunteer at an orphanage. That trip required various travel vaccines, some of them live. His mother was apprehensive about that but Daniel was determined. Reluctantly, she acquiesced.
"After he had the vaccines, his whole body literally crashed. It's like someone came along and just zapped his energy out."
The nurse at the travel clinic put it off to a passing side-effect. Daniel would sleep it off. But the symptoms got worse and the more he moved, the worse they became. Sore throat, headaches and creeping pain.
Daniel never went to Peru. Instead he and his mother began a deflating round of encounters with health practitioners, many of whom were skeptical that he was as sick as claimed. He never looked sick. It was a teenager thing. He was depressed. He just needed to get out more.
"This invisible disease, as we have in life today many invisible diseases, is what he encountered," Chang says. "He was stereotyped from day one."
Finally, when a test showed shockingly low immunoglobulin levels in his blood, Daniel was sent to an expert. It was about then, when Chang was idly leafing through a waiting room medical journal one day, that she learned about the Environmental Health Clinic in the Toronto area, and many patients there stricken with the same debilitating symptoms as her son. It took some doing but she got her son an appointment. Soon after, the two of them finally had a diagnosis.
Daniel was suffering from myalgic encephalomyelitis (ME), a chronic neurological condition thought to affect close to 410,000 Canadians, a serious disorder with a cluster of clear physical symptoms that often devastate lives.
"The common term is chronic fatigue syndrome," Chang says. "It does not do it justice, because people think that you're just tired all the time."
In fact ME sufferers report extreme fatigue, joint pain, stomach problems, headaches and memory problems. Symptoms often worsen gradually and can result in people having to give up work or education, in extreme cases leaving them housebound. There is no medication to treat chronic fatigue syndrome specifically, but drugs, including painkillers and antidepressants, may be used for symptomatic relief. It remains a poorly understood disease, which has led to it being dismissed by some health professionals.
Daniel grew so frustrated with the paternalism and skepticism he routinely encountered on his treatment odyssey that he decided he had to do something to educate health practitioners. He went on to post four YouTube videos relating his experiences with ME, his astonishment at this unknown world of chronic illness and his conviction that ignorance about ME is self-perpetuating — that so few people are aware of the disease because most of its victims, wretched and weary, isolate themselves from the rest of the world.
Through his own research and interaction with other sufferers, Daniel had seen how terribly ME cases can end, with some patients reduced to a sensory-numbed silence alone in a darkened room, blindfolded and hooked up to life support. He told his mother early on that he would never want to end that way.
For awhile Daniel got a little better. In 2011 he was doing well in university, carefully balancing his energy stores while keeping the worst of his symptoms in check. But then the pain returned, so bad that he couldn't get out of bed in the morning. It was around then that his mental health also took a turn. He wound up in an emergency department. He received referrals to an assortment of crisis centres. He was also placed on a strong opioid for the pain, which he later decided not to take as the opioid was not helping with the pain management. Daniel was also familiar with the possible dangers associated with opioids.
All the while Chang and her family searched desperately for alternative treatments and therapies that might restart Daniel's immune system and relieve him of his miseries. But on that spring day in 2012, Daniel had come to the end of his journey. He'd fought a courageous battle for three years, his mother says, and he had nothing left to give. He just could not deal any longer with the excruciating pain in his life.
Chang says she joined Patients for Patient Safety Canada to help the vulnerable, especially anyone else struggling with chronic illnesses like her son, and to emphasize the need for open communication and compassion between health care providers and patients and their families.
"The patients and families often know what's best for him or her. And so when we want to engage and help it's not because we're saying, 'Okay, there's the solution, give us the treatment.' We're trying to also assist with that help," Chang says.
"My son was articulate. There are many, many individuals out there whose first language is maybe not English. There's the paediatric population. There's those who are not as fortunate as I am to be in Canada with all the health care we have, and all the specialists. And then we have the geriatric population."
Throughout his illness, Daniel was always keen to be part of the lobby in support of ME awareness in Canada. His mother brings that ambition to reality every time she tells Daniel's sad story.