Below is the text of a speech I delivered on the main stage of Stanford Medicine X on September 16, 2017. Giving the speech was a highlight of 2017, and I used the occasion to talk personally about my disease and how it affects my outlook on my future:
I still remember sitting across a breakfast table from my Sunday school teacher in 2007, when he said something that still sometimes I still want to hit him in the face.
“Chronic fatigue syndrome? Oh, I have that.”
And that may be what you think, too, if you heard those words.
This was a disease that had derailed my life. I couldn’t go to school. I couldn’t play soccer. I couldn’t go out with friends. I’d seen more than a dozen doctors. And they were all baffled by it.
That’s why many of us think even calling it “chronic fatigue syndrome” is a slap in the face to millions around the world who have the actual disease myalgic encephalomyelitis.
It means a “painful inflammation of the brain and nervous system.”
Patients experience levels of dysfunction similar to multiple sclerosis or late-stage AIDS. Walking for five minutes feels like running a marathon. People sleep for 12 hours and feel like they didn’t sleep a wink.
But there’s no single lab test to diagnose it. There are no FDA-approved treatments. There isn’t even a true billing code—so it’s rare for insurance companies to pay for treatments or visits to specialists.
Ten years later, I’m one of the rare success stories of ME/CFS patients. I now have a doctor who understands it. I have parents able to help pay for a protocol of off-label treatments and supplements. My life is made possible by taking a handful of pills each day, giving myself shots, and getting an IV treatment every month.
I was able to make it through college and work full-time—many young people who fall ill can’t do that.
I became a journalist and started writing about my experiences, first for USA Today, and then after building a non-profit and setting off on a journey across the country to make a film about this disease. The film is called Forgotten Plague and you can see it for free on Amazon Prime.
My co-director and I met people who haunt me years later.
This is one of them (show pictures). His name is Jamison. He was a bodybuilder who fell ill with ME/CFS. He nearly died from it. He spent years bedridden in a darkened room. For many months he lost the ability to eat solid food or to speak at all. Today he needs a full-time caregiver.
Jamison and I have the same dream. We both hope to one day be fathers. It’s the simplest thing to ask.
I want to teach my son to build a fire underneath the starry sky. I want to teach my daughter to dance the salsa.
But my deepest fear is that Jamison’s fate and my own fate are interwoven. I fear that what is destroying him is just a ticking time bomb in my own self. I fear that my hodge-podge of treatments, that are still working for me, are like using duck tape to prop up a crumbling building.
I fear that I would join the thousands of absent parents who miss piano recitals, crippled by a disease that the medical establishment doesn’t recognize.
That’s why I’ve used my platform with the documentary to raise money for research, speak at hospitals, and run a fellowship program for medical students.
Solutions exist for our disease. But the very first one, and the most vital, is to have an irrational hope in the face of what can feel like utter hopelessness.
In the words of my favorite poem, “There is a light somewhere. It may not be much light but it beats the darkness.”
Just last month Stanford scientists announced they had found 17 markers in the blood that differ in ME/CFS patients as compared to healthy people. They’re on the path to one day having a blood test in every doctor’s office that can diagnose the disease. This would change lives—it would give validation, change education, change treatment, and change insurance.
There is a light somewhere.
I’m 27 now, and I don’t want for things to be this way when I’m 47. I want to keep fighting. If we don’t, the situation for a million Americans with this disease will still be the same. The situation for me will still be the same.
But I still want to have a daughter. And I want to dance with her.