How Great Human Beings Find Their Purpose

It's probably a mistake to think you were "born to be" an entrepreneur, cure cancer, or become an actor. Your purpose is not just a function of your inherent talents, but rather the product of how those talents interact with what life throws in your path.

Jen Brea was studying for her PhD at Harvard. One day, she tried to sign a check at a restaurant and found she could not write her own name. It wasn't long before Jen couldn't crawl across the floor or lift her head off her pillow. Doctors didn't know what was wrong, and some made ludicrous guesses.

Here's the reality: Jen has Myalgic Encephalomyelitis (ME), also known as severe chronic fatigue syndrome (CFS), a systemic neuroimmune condition. It weakens her and - in a cruel twist - her symptoms often get dramatically worse when she exerts any energy. So, if after weeks or months of being bedridden, she feels better and takes a little walk on a sunny day, she may collapse before she gets back to her house, and even be unable to speak or move.

For two years, she was mostly bedridden. "It was," said Jen, "Like I had died but was forced to watch as the world moved on."

Jen's purpose turned out to be standing up for about 17 million people worldwide like her, who often are unable to stand up at all.

From her bed, throughout long periods when she questioned whether her life any longer had meaning, Jen directed a movie: UNREST. Yes, she directed the movie, and also is the subject of the movie.

The film debuted yesterday at the Sundance Film Festival, and I attended a screening hosted by FireFilms, which selects potentially world-improving documentary films and helps filmmakers achieve their goals “from completion to distribution to solution”.

Moments after her film ended, Jen joined us and answered questions along with her remarkable husband, Princeton University Assistant Professor Omar Wasow and also Stanford University Professor Ron Davis, whose son, Whitney, has severe CFS.

I am not an emotional person, but sitting six feet from these three, I cried so much my contact lenses almost slid out of my eyes. I wasn't alone; nearly everyone was crying, including Omar and Jen, who showed unbelievable courage, tenacity, and character in documenting the insidious human flaw that makes this disease so horrific:

Cynicism and disbelief are what enable this disease to ravage so much human talent.

For too long, no one took these patients seriously.

For too long, no one has been willing to fund research into this disease.

UNREST documents how some ME/CFS patients cried with joy when they were finally diagnosed because at long last they had proof they weren't crazy or merely "hysterical" women.

You see, 85% of ME/CFS patients are female. Their symptoms are often dismissed as psychosomatic, imagined, or exaggerated.

Science Magazine reports it was only in 2015 that "the Institute of Medicine (IOM) dismissed the 'misconception' of the disease as psychological in a report informed by a review of more than 9,000 articles from 64 years of medical literature".

Funding for ME/CFS research is nearly non-existent. Professor Davis is a renowned geneticist and director of Stanford’s Genome Technology Center; the National Institutes of Health (NIH) have repeatedly turned down his grant requests. Stanford Medicine reports that in 2015 NIH "allocated only $6 million in 2015 for research into CFS, which has roughly 2 million sufferers. (To put this in context, the annual NIH research budget for multiple sclerosis, with 400,000 sufferers, is $94 million.)"

So Jen decided to go public. She enlisted a stunningly talented creative team. She managed to film other people like her, many of whom can't get out of bed... people who are typically invisible to the rest of us.

Most importantly, she enlisted her husband Omar. She convinced him to film her crawling up stairs, rather than helping her. I can't imagine the courage and character it took both of them to do this.

Bear in mind that in the early days of Jen's impulse to film herself, she didn't have funding, or a team, or even a decent camera. Many days, she didn't even have control of her own body. She recalls, "I didn't know what else to do, so I kept filming."

But both she and Omar persisted... just like Professor Davis persists as his son suffers in the dark and the NIH all but ignores this horrific disease.

Here's what so moved me this afternoon: I was watching Jen and Omar watch us. This was the culmination of years of struggle and pain and sacrifice on their part... they wanted to see whether their film worked. Would it move audiences? Would it spur us to action? Would it generate a public outcry sufficient to increase dramatically funding for ME/CFS research?

Truth be told, we don't yet know. It all depends on YOU.

My guess is that you know someone struggling with this disease. Ask your friends and colleagues, and the odds are pretty high that one of them has a relative with ME/CFS.

Go to the film's website. Subscribe to their mailing list. Donate money to help them get the film in front of doctors, scientists, funding sources, and the general public. It's incredibly hard to get documentaries seen by large audiences, and this one most definitely deserves to be seen.

But don't stop there. Learn from what Jen and Omar - and other equally spectacular people featured in this film - just achieved. They found their purpose thanks to what life threw at them. It certainly wasn't what they once imagined their purpose to be.

I guess that they will help far more people because of what ME/CFS has thrown in their path than they ever would have helped on the paths they once imagined.

The same is true for you and I. Our opportunities to do good often come from unexpected adversity, rather than from day-to-day good fortune.

When you see a chance to help, step up.

HINT: this is an opportunity to help.