Monday, April 25, 2016

Standing on the Shoulders of Activists Who Came Before Me

A couple of weekends ago (and I really cannot believe it's taken me this long to post about it, except I also sorta can, because -- well, life), I was in Chicago for HealtheVoices16, a conference I'm proud to have advised on over the past few months. I got to help shape a weekend in which nearly 100 of us gathered to talk about our online communities across a number of health conditions -- HIV/AIDS, diabetes, mental health, cancer, Crohn's/colitis, and rheumatoid arthritis, to name a few. We talked, but we didn't just talk -- we made deeply rooted connections, the theme of this year's conference.

One example: AnnMarie Otis of Stupid Dumb Breast Cancer was there, and it was our first time meeting in person even though we've been in touch on social media and even over the phone for years. Yes, she is as tiny and fierce and passionate in person as she is in her online presence. We hugged and cried a little. We talked about our mutual love of Birkenstocks and our Sunday Italian family dinner traditions. We practiced yoga together. I'm the one in the crazy pants.

On Saturday night, AnnMarie was at my dinner table. We sat next to an HIV activist, Aaron Laxton, who is as brilliant as they come. I could listen to that man talk all day about viral loads, clinical trials, and the work that still needs to be done in bridging the gap between the 'haves' and 'have-nots' in this country (not to mention the world at large).

I implore you to click on the links to Aaron's story. He talked to me about prognoses for those infected with HIV; it's pretty good so long as the person receives treatment. AnnMarie and I marveled at how far the metastatic breast cancer community still has to go. "We are in the freaking dark ages," she said to me at one point. To which Aaron responded, "I am standing on the shoulders of the activists who came before me. Let me help your community."

And then I started crying. Again.


As part of my conference duties, I had the honor of introducing a session speaker, Trevis Gleason. Trevis lives with multiple sclerosis (a word, I learned, that is very hard for me to say when speaking in front of a group). He's also a former chef from Seattle who now spends part of his time in Ireland. After blogging about MS for some time, Trevis wrote a memoir I can't wait to read, Chef Interrupted: Discovering Life's Second Course in Ireland with Multiple Sclerosis. His talk to our group was about taking our advocacy efforts offline, something I've been trying to do more of over the last year.

I've got a conversation scheduled with my agent this week about whether my book has garnered any interest from publishers (WHY DOES THIS PROCESS TAKE SO LONG). Aaron (the guy in the photo above) is going to teach us in the MBC community some advocacy tricks. I am participating in a Twitter chat about metastatic breast cancer with the Tigerlily Foundation in early May...which is suddenly next week. And I am waiting to hear about an advisory role with the Young Survival Coalition.

I am inspired, and can't wait to see what lies ahead.

But first, camping with Quinn's preschool this weekend. Because -- well, life.

** Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.**


  1. Well I cried again. Meeting you was just like reconnecting with a college friend. Only we did not have enough time. I can not wait to be friend forever and make real changes! With our new side kick XOXO

  2. So nice to get to spend time with you at the conference. Have fun at the camping weekend, I can remember those days (mine are 18 and 20 now, but it feels like just a few years ago)! xoxo

  3. So happy to see you doing so well. You are always inspiring.

  4. i have many belarusian women in my blog!so i will share your thoughts about this!thank you

  5. Well, LIFE is important! Hehe. Glad you had a great time. That is a great quote about standing on the shoulders of activists before him. We will take all of the help we can get!

  6. It's nice to know that well... Life doesn't just interrupt me. I enjoyed your reflection of the conference and that Aaron will be a part of strengthening your advocacy skills. It's refreshing to know our health bubbles can overlap and we can truly assist one another to be catalysts of change.