In good company
We all have the same ending--and the stories of others can get us through a lot
Jellis Vaes started The Heart Warrior Project after surviving out-of-hospital sudden cardiac arrest (SCA) at the age of 28. Like me, he was one of the lucky ones. He received immediate assistance from his girlfriend, first responders arrived quickly, and he was discharged after a coma without serious neurological damage.
Reading Jellis’s story on heartwarriorproject.com, I see much of what I’ve written about recovery mirrored back at me. Jellis mentions the lack of emotional support after leaving the hospital, and how he was left to research wellness factors beyond pharmaceuticals (food, exercise, supplements) on his own. Apparently doctor appointments are not much longer in Belgium than they are in the U.S., and he has only a few short minutes with each specialist to ask questions.
Jellis, like many other SCA survivors, felt called to do something about what happened to him. He’s been volunteering his time to help others through The Heart Warrior Project, creating a podcast series, and interviewing other survivors (you can listen to it on Spotify, YouTube, or on his site.)
One of Jellis’s guests, Joe Fisher, talked in his interview about how surviving SCA increased his drive towards connection. Listening to Joe, I realized that I’d been thinking my experience was 100% special and unique. Sure, in some ways, it is. And yet I am far from alone. Many of the same themes Joe, Jamey, and Trish talk about on the Heart Warrior podcast are running through my own book, Independence Ave.
Listening to these individuals tell their stories reminded me that I touched something universal in my own death and resuscitation. I may not have seen the angels or bright white light that many people want to hear about, but what I did experience is every bit as amazing.
Still, I’m in the early days of recovery. Like all SCA survivors before me, I beat myself up about lack of progress and have trouble accepting what I can no longer do. I’m just starting to make new social connections—responding to strangers who reach out after interviews; emailing Jellis; and attending online support groups like CASA. I’m planting seeds, and it’s honestly very slow going.
When I started this Substack, I think my main goal was to stop feeling invisible. Heart failure and SCA survival (and for that matter, my other maladies like PTSD, epilepsy, and chronic migraine) are largely invisible health problems. I felt a burning need to explain what was happening inside myself to the world I faced after my coma—a world that had literally zero idea what to make of my situation.
Jellis is only a couple years ahead of me in his SCA journey. The Heart Warrior Project is really coming along, and I imagine it must have helped him battle the loneliness and grief that all of us face as we begin adjusting to new lives and bodies. Perhaps that’s why he wrote this on his website:
I know this road can be lonely and has many ups and downs, but you are certainly not alone, my heart warrior friend.
His little statement of empathy—backed up by the survivors’ stories on his podcast—means the world to me.
It’s been one year. Some days, I still want to fade away. I want to stop baring my heart on this newsletter, stop working on my next book, avoid social engagements in town, skip support group meetings, and fail to follow up with producers offering interviews. I want to fade until I fade out, and to stop fighting for survival. For context: I’m drafting this after a 7-day hemiplegic migraine, where half my face drooped like I was having a stroke…and after getting an echocardiogram that showed both atria of my heart have enlarged in the past six months, a progression of heart failure and valve issues that points in an unhappy prognostic direction. Oh, and I’m getting lumpectomy surgery on my right breast next week.
Bitter, me? Yeah…I’m a bit raw. Once again, it’s all piling up too high. There is no amount of yoga that will fix this. I’m still not better. I’m still not free.
But when I start to pull away from life, what reels me back in (at least a little) is listening to the stories of others. Others who share my predicaments—like other SCA survivors, others with epilepsy, and a girlfriend I recently dubbed my “Breast Lump Buddy”—and also, stories of those whose paths couldn’t be more different than my own. My husband and I laugh and cry our way through the work of R. Eric Thomas on Audible, and while much of our outer trappings vary greatly from this Black, male, LGBTQ, religious blogger-turned-memoirist from Baltimore, I frequently recognize the deeper aspects of my own soul in his words. I take down quotes to ponder later in my own journal. Quotes like this one, from the random one-man play at the end of his first book, Here for It: “At the end of the story, you die.”
This line comes from an elder version of Thomas himself. He’s speaking to the young Thomas about how looking for a happy ending doesn’t make sense.
“At the end of the story, you die.” It hit a nerve. This is the end of each of our stories, of course. Don’t I know it, having narrowly escaped my first ending. This awareness runs through all the stories, told from the perspectives of all the disparate people on this Earth facing their diverse challenges. And so my faith actually comes from stories about what we’re able to create along the way, knowing all the while what the ending is. My faith comes from the simple belief that whatever else happens before the curtain closes, I’m connected; I’m in good company.
It’s an important step in healing to remember that others have been through similar things. Whatever you’re going through yourself, I promise this is true. Nobody has your exact same experience, nobody else is you, but somebody can relate. You just have to keep looking until you find them. And if you don’t know where to look in your own circle or existing community, there’s always 988. Or HeyPeers. Or OpenCounseling. Nobody need be alone. Reach out until another human reaches back.
In one of my better moments of recovery, I felt called to volunteer with individuals in crisis, and signed up for training. I know intimately how chronic illness can gradually wear down previous relationships, social fabric, and sense of self. I’ve experienced the difficulty of planting seeds for new relationships while feeling helpless and terrorized by my own body. I know what a relief it can be to share my worst fears with someone who can hear, understand, and validate them. My darkest experiences give me a profound empathy for the many ways that people struggle.
I’m still amazed, despite being eight weeks and 100 hours into my time as a crisis counselor, how powerful it is just to sit with someone (emotionally/virtually) and hear them out, sans judgement. I think I always assumed that crisis lines existed to give people advice, or offer magic words that changed people’s minds about their situation. I assumed crisis lines existed to fix something. But usually, I’m learning, fixing the problem is beside the point.
The point, of course, is Empathy. When people text in a crisis, they do so because they feel alone with something and the alone-ness itself is the worst part. When we help them feel less alone, they magically leave the conversation feeling better—even though the original source of crisis remains. What they’ve done is shifted, or at least considered shifting, their story.
I see a similarity in what Jellis is doing for his community of SCA survivors. He’s a heart warrior, yes. But he’s also a Loneliness Epidemic Warrior. He’s making us all less alone with our heart stories; and in doing so, giving us the opportunity to make our own a tiny bit more positive. I wanted to write this post to thank him and his guests for what they’re building. I wanted to bring his project to your attention in case you, or someone in your life, is a fellow heart warrior.
Happy Heart Month!