Thursday, April 18, 2019

Out of Hibernation


This blog, as my friend Amelia says, has been in hibernation, and it feels strange and raw to type here again, like the first squeaks that come out of your mouth when you haven't spoken in awhile or had your morning coffee yet. God knows I need my morning coffee.

Leave it to HealtheVoices, a conference for online health advocates, to push me out of my rut and remind me that my voice not only has the power to help me heal, but more importantly, the potential to help others. Side note: I was in a car accident about six weeks ago, hit nearly head-on as I was exiting my neighborhood. My neck and left shoulder have been a mess, and I've been seeing a massage therapist and chiropractor to realign things and feel better. But as she was pressing into my neck and jaw muscles last visit, my therapist noted that those are the muscles that go tense when we have things to say but hold them in. So I am hearing this message loud and clear lately: speak up.

I spent last weekend in Dallas for my fourth HealtheVoices conference, and from the opening session on Friday morning it was clear it was going to stir up some emotions. The speakers talked about resilience, specifically about building resilience through sharing our stories. "We don't heal in a vacuum," said the brilliant Kelly Wilson, when talking about struggles with PTSD. I plopped down right next to her at dinner later to discuss specific therapies as if she herself was going to take my insurance and prescribe me treatment. But she was gracious and kind, and extraordinarily humble about her work.

This was HealtheVoices' fifth birthday. This year's theme was inspired by Mike Durbin, who handed out bracelets last year that say, "A little heart can do big things." More than 140 advocates representing over 60 medical conditions attended this year to share their hearts and the big things they are doing. Half of us were veteran attendees. Someone in their third year joked they hoped they could come back for senior year in 2020, which had me wondering whether it might be my time to graduate. I really hope not, because I still get so much from being there.

For one, it's like whoever assigned these quotes (mine was: "The time to relax is when you don't have time for it.") knew exactly who they were talking to. Noted: I need to relax.

But top on my list are the connections with those who simply get what it means to survive cancer -- all of the loss and fear and "holy shit, why me?" that that entails -- creating a sense of family. We joke about missing body parts and how we complete one another, but all joking aside, these are my people and one weekend a year is not quite enough time with them. If I could get Janssen to sponsor a cancer survivors' road trip, I'd be all over it. Seriously, Ann Marie, can we make that happen?

Friends from nearly the beginning of my cancer story 💖
My conference family, from left: Justin of A Ballsy Sense of Tumor, Ann Marie of Stupid Dumb Breast Cancer, Me, and Kyle of Check15
A close second are the connections with people outside of the cancer world. In talking to a mom advocating for her child with schizophrenia or a mom living with rheumatoid arthritis, I realize how many issues we share -- finding time for self-care being a universal struggle. Balancing how we talk to our kids about our (or their) illnesses versus the day-to-day of actual parenting while in treatment is a challenge. We can do better when we learn from other advocates. 

Year after year, I am impressed and inspired by how others are changing the healthcare system from within, putting patients first, lobbying Congress for access to care, and speaking out on blogs, at conferences, on podcasts, and everywhere else they can about what it means to live through illness and, more importantly, HELP OTHERS in the process. I think I am the luckiest person in the world that I get to know these humans and learn from them.

Gabe Nathan and Ann Marie Otis, two of my favorite people
 In this group are warriors battling depression; survivors living with HIV, schizophrenia, epilepsy, and autoimmune disorders; advocates who are in remission from cancer, like me; stroke survivors, and more. I got so lucky when I stumbled across this conference 4 years ago. Every year it reminds me that you never know what those around you are facing (so be kind, always) — AND that our little hearts can do big things.
I'm not going to sugarcoat it -- I've had a tough time transitioning home from HealtheVoices, and I know my therapist is going to ask me if it's worth it for the emotional toll it takes to readjust. YES, I will tell her, probably through tears as I grab another tissue from the box and tell her how I got into a conversation with the guy on the plane next to me on the way home. He had tattoos on his hands and face, and spent most of the flight drawing technical sketches of motorcycles on his iPad. While we waited for our pilot to find a gate to park at, I learned that Bryan designs bikes for a living and was in Dallas for a motorcycle race. I talked about cancer -- specifically my friends who advocate for testicular cancer awareness, and passed along a bracelet from Justin at A Ballsy Sense of Tumor. He said he'd check it out. "That's so cool what you all are doing," he added, and I wasn't even tempted to downplay our efforts. Because at HealtheVoices I rediscovered my voice and at least some of my value, which is no small thing. Even if it means talking about testicles with a stranger on a plane.

And also I learned I should probably have affirmations posted to every bathroom mirror for daily reminders that I am enough. We all are.

Here's to coming out of hibernation. Here's to all our little hearts doing big things.

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