Funny Thing Happened At...

I had the honor of attending the Janssen-sponsored 2019 HealtheVoices conference, which is the all that be of the advocacy conferences with amazing patient advocates from across the country. I was intrigued to learn about the conference that has been in gear for 5 years and elated when I found out I was chosen to attend after the application process. This year, they hosted 140+ advocates spanning the United States and many health conditions, whether it was multiple myeloma, prostate cancer, mental health conditions, HIV/ A.I.D.S, heart disease, and more. There were some great people moving day by day doing what we all hope to keep doing, and that is living.

So, during my time meeting these remarkable souls and literally letting my hair down literally, there were some conversations (even though I’m sure it wasn't the intention) that brought about a bit of glum for me and really made me think about something that I guess can be glossed by...reality.

A funny but not funny life

This year will be 11 years or so with multiple myeloma. I’m currently in remission, but during the conference, I really was struck with a reality bomb. There were more than I’d like to remember conversations with wonderful folks who recently relapsed in one way or another. At that moment, for the first time in a while, I was brought to a sunken place. We’re moving and doing the most and best we can. But when you hear of other people who’ve relapsed, or things are back to square one for them… well, that kinda knocked me off my feet a bit.

The conference is now done. I’ve gathered some wonderful skills and have opened my heart to keep at what I’m doing in this patient advocacy world. Though there were stories of many who are not doing the best right now, they are doing what we all do and that is still fighting and getting by through this funny and crazy thing called life.

A new look at the word fighter

Fighter is a word many of us use so loosely in the blood cancer world. It was a word that even held strong during this conference and then later in this reflection. We use this term, often so dear and strong to our hearts, because our lives have been forever changed from the time we left that dreaded appointment where we were told we have this or that. The word "cancer" automatically puts everyone in the fight club. The fight club is not for the elite but for every man, every woman, and every child putting in the work to beat whatever they have on their health schedule for their lifetime. The fighting continues until all lights are out and the fight has pummeled our last breath.

It's okay to not always be positive

HealtheVoices gave me another taste of reality and, though sadness popped into place for a little bit, I’m back to my vibrant, fighter mode. The funny thing that happened to me was realizing that it’s okay to feel how we feel at that moment. I exude positive energy but even I was briefly down for the count. It’s okay to have our emotions, just don’t stir in the negative ones for too long. What I always note... this too shall pass, and if the light is still on, then there's more to do.

Author's Note: Janssen paid for my travel accommodations to this year’s HealtheVoices in Dallas, Texas.

The time to fight is now, with integrity, grace, hope, and a smile….when you feel like it