HealtheVoices 2018: Gearing Up and Day One

A few months ago, I saw an Instagram post from my fellow Uniballer, Kyle Smith of Check 15, that mentioned that he was on the Advisory Board of HealtheVoices18. He also shared an application link and urged people to apply. I filmed my video application and was about to hit submit when I realized I had made a vital mistake.

I repeatedly referred to the conference as "Heal the Voices” while it's actually pronounced "Health eVoices." I should have realized that it's a conference for online health advocates, so eVoices makes sense. Fifty-three takes later, my final draft was submitted. Despite this hiccup, I was accepted, and arrangements were made for traveling to Chicago in late April 2018 for the three-day conference.

When I arrived in Chicago, I grabbed a late-night snack with Kyle, marking the first time the two Uniballers would form one complete sack. We had to ensure he sat on the left side of the table, while I manned the right.

After a day spent in hardcore tourist mode (that included administering my survey and a visit to the Chicago Bean, which, I of course used to demonstrate a self-exam), we had one session on Thursday, a day ahead of the official start of HealtheVoices18. A number of cancer advocates and I were invited to be an advisory panel for Cancer.com. This was my first experience being in a room full of cancer advocates, and I have got to say, I loved it. Instant bonds were formed, especially while sharing why we all started advocating. I noticed immediately that we are all passionate about what we do, and I commend the Cancer.com team for listening to our honest input and sometimes critical feedback. I look forward to seeing how they continue to develop and improve the website.

The next morning, HealtheVoices18 began with opening remarks from Caroline Pavis, who works in corporate communications for Johnson & Johnson, the parent company of Janssen (the company running the conference). According to her, there were more than 400 applicants for the conference and 122 total advocates (representing 40 health communities) were accepted, with 52 percent being new attendees and 48 percent being returning veterans. She also stated the theme for HealtheVoices18: "Growing Stronger Together."

Next, Kerri Sparling, a diabetes advocate, took the stage for the opening keynote. While her condition is far different than mine, I did find myself connecting with her on numerous levels, and not just due to our common shared interests: an appreciation for humor and cat pictures. She told us her story of having to "follow the rules" of diabetes (check your blood sugar regularly, watch what you eat, and more) when she was younger, which reminded me that I had to eat and drink even when I didn't want to during chemo. She closed her keynote by asking us to remember why we started advocating and to use our work to amplify others' stories, which solidified my dedication to the Band of Ballers series on my testicular cancer awareness blog.

The next HealtheVoices18 session launched with attendees developing a one-word definition of resilience. We also heard about the benefits and consequences of being (or not being) resilient. Janssen's researchers shared their definition: "Acquired ability to regularly recover, adapt and grow from stress," and defined three levels of stress - normal stress (in my case, my teaching job, being an adult), training stress (advocating with new projects, learning new homeowner/technology things) and excessive stress (taking too much on at once).

This was followed with a panel discussion from five different advocates, many of whom had attended previous HealtheVoices conferences and all represented a different advocacy domain. These are their quotes that stood out to me:

Kenzie - "Keep showing up."

Kate - "This is just another day… It'll be OK tomorrow." "Make your illness work for you."

Jen - "Kids live in the moment - it's such a great lesson."

Hetlena - "Have a bad day for a few minutes. Put it on a timer and move on." "Turn a negative into a positive."

John - "The difference between being and having is really at the core of the story. I'm not HIV and HIV is not me. I'm John."

After a fantastic dinner, Catherine Bright, President of Infectious Diseases for Janssen, took the stage to share her own experiences of how health advocates helped her daughter. Her final message reminded us that "there are always families out there who are wanting and needing to hear your voice."

Our last speaker for the evening was Karen Duffy, a chronic pain advocate, former MTV VJ, and actress (mainly of Dumb and Dumber fame). Again, while her condition does not involve cancer or testicles (the latter would be pretty hard), I found many parallels to my own life. She was at the top of her game when she developed her condition, just as I was in 2016. She decided to become an advocate just because she could - she had the skills to serve and was committed to using them in a positive way. As she said, "Pain is inevitable, but suffering is optional. I didn't want a bad day with my disease to trick me into thinking that I had a bad life."

This is part one of a three-part series about my experiences at HealtheVoices 2018. Be sure to stay tuned to see the other two parts.

Disclosure: My travel expenses were paid for by Janssen Global Services, LLC. All thoughts and opinions expressed on social media or this blog are fully my own, honest thoughts and not reflective of those held by Janssen.