Thursday, May 4, 2017

Collective Voices, Dropping the Mic

Invisible armor? Sure. And conveniently disposable.
MSers Laura, me, Yvonne, and Lisa.
Let’s not kid ourselves. I didn’t want to get diagnosed with multiple sclerosis. And I’m going to guess you didn’t either. You’ve probably heard, though, people talking about how it’s made them “a better person.” About how the disease has reframed and reshaped their lives … in a positive direction. Whaaa?

When I first heard this, I figured someone had clambered onto the medical marijuana express with no intentions of getting off (all aboard the Ghost Train Haze!). It made no sense. The only thing I was positive about when I was diagnosed: I did not want this shit. Not. At. All.

Which brings me to last week in Chicago for HealtheVoices 2017, a conference of some of the most influential online health advocates in the world sponsored by Janssen Pharmaceuticals (for the record, they paid all expenses related to my trip and everything you read about this adventure are my thoughts alone, not thoughts channeled to me by a toker on an MJ train).

The folks who really moved me. I guess that's everybody. Yes, you too, Josh (far left).
None of us there, 105 advocates altogether, planned to be advocates. Many have serious conditions, some are parents or children or caretakers, and some found this path by happenstance. But all of us—you (yeah, you), me, my fellow advocates—have one thing in common: We didn’t choose to carry this torch.

(A few things about torches. They can light the way. They can warm you in the chill. And they can also set your hair on fire all Michael Jackson like. Use caution.)

Now that I’m carrying this torch—the one I definitely didn’t want to carry—I get it. I get the “I’m a better person part.” Still totally sucks, but I get it. And working with over 100 luminaries in health advocacy at HealtheVoices has only galvanized that feeling. I was going to list all of the advocates I met that moved me, the individuals that really moved me. What folly.

First, I met everyone. As an adviser and panelist for the conference, they asked me to say a few words the first morning to introduce myself and gave me the microphone. Big mistake. I proceeded to inform the attendees that the conference was going to be a complete and utter failure, a bust of epic proportions, if they didn’t go home with a very, very special, life-changing card. That card? My business card. So yeah, by Sunday only a few names were on the potentially bad karma list (I know who you are!).

Second, they all, each advocate, moved me. And no, it wasn’t because they took turns pushing me around in my wheelchair (only Laura can do that). Their stories and energy and spirit are humbling. By the end of the weekend, there were so many mic drops I lost count. They are all now my BFFs, they all understand, they all get it.

Now before you have a conniption fit, understand we are still best buds. Nothing has changed with our friendship. Like Tuco says from Breaking Bad, we are still tight tight. It’s just that instead of thinking only about my 2.4 million pals with MS worldwide, I’m also thinking about my friends with HIV. With IBD. With diabetes. With cancer. With schizophrenia. With psoriasis. With rheumatoid arthritis. With lupus. With you name it.

Me (surprised) and my BFF Ryan. Also shown (note arrows):
BFFs Nicole (left), Yvonne (middle) & Kelly (photobomber).
When you have an incurable disease, the weight of the world on your shoulders can feel pretty immense. But know that there are more than a billion Atlas’s out there, each one with his or her (or their) own personal earths settled on a pair of weary shoulders due to a myriad of health issues. And they all bear this weight just like you and I have to.

We still don’t have to like it. But I have to admit my life is, without question, richer because of MS. And part of the reason for that: all the BFFs I’ve made in the 11 years since my diagnosis. Not to say a cure wouldn’t be awesome, but I wouldn’t trade my friendships with all y’all for anything in the world.

p.s. Speaking of mic drops, even the sponsor got in the act. Janssen announced the HealtheVoice Impact Fund, a new $30,000 grant to fuel impactful projects created by online health advocates (501c3 not required). Anyone with an online presence can apply. That’s how the conference closed. Boom, thank you, and goodnight.