Going viral about sudden cardiac arrest
The strange and beautiful aftermath of sharing my "death" story on the interwebs
“Chris!,” I hollered, as I half-ran, half-tripped down our steep back staircase.
“What’s up, babe? What is it?,” my husband answered from the kitchen.
“A friend just sent another one. The Daily News. And look!”
I gleefully shoved my phone in his face so he could see the familiar photo of us and its bold, red-and-white caption: “WITH SAVIOR HUSBAND.”
We giggled, and referred to him exclusively as Savior Husband for the rest of the night. What else was there to do?
A lot happened since my last post.
As I prepared to take December off from publishing this newsletter, I did some pondering. Personal referrals to Cognitively Intact were dwindling and subscribers had leveled off. My small band of followers were very engaged, but I knew I wasn’t doing everything I could to build community and awareness around cardiac arrest and chronic illness.
My husband agreed and suggested that I go on Reddit.
I’d only been on Reddit a few times. You know, to check out the epilepsy and PNES support subs…I’m fun like that. But ok, I told my husband. For SCA awareness, I will see what I can do. I poked around and soon stumbled on r/IAmA, a sub where people introduce themselves as “I am a…” and host Ask Me Anything (AMA) sessions. I am a recent cardiac arrest survivor, I thought to myself. There can’t be many cardiac arrest survivors who are willing and able to talk about the experience. Maybe an AMA would be a good way to get that conversation started. I figured that only a few people would ask questions and my post would quickly sinks to the bottom of the “Hot” list, but what of it? No harm in sitting online for an hour or two to wait for questions.
Well, that wasn’t what happened.
When I pulled myself away from the marathon typing session that was the AMA (having spent two and a half hours answering questions as fast as I could) I was pleased that I’d hosted an interesting conversation and made a few personal contacts. Then, the Substack “new subscriber” notifications started rolling into my inbox. I began getting direct messages through Reddit from folks who had similar stories or had lost loved ones. Wow, this is really going somewhere, I thought. Even though I’d edited my original post to end the AMA session and signed off Reddit, the questions kept coming at an alarming rate for hours…then days. The post got well over 6,000 upvotes, 1,400 comments, and 4,000 shares within the first 24 hours or so.
There were a few snide and hurtful comments. I’m a bad wife, I was told. My story doesn’t make sense. “This is what you do with your life now?” And of course, jabs about promoting my book.
But the vast majority of my inbox was flooded with people thanking me for opening up. Sharing that their dad or spouse had died of an SCA, and my story gave them comfort because it sounded like a peaceful way to go. Sharing that they themselves survived an SCA, and my AMA made them feel less alone. On and on. I responded to as many friendly strangers as I could.
At first, the fanfare felt pretty good. I figured that several additional people on this earth knew what sudden cardiac arrest was because of my Reddit AMA. Per the American Heart Association, cardiac arrest claims more lives worldwide than colon cancer, breast cancer, prostate cancer, the flu, pneumonia, car accidents, HIV, firearms, and house fires combined. Yet few people in the U.S. have any idea what sudden cardiac arrest means or that when someone enters cardiac arrest, they are clinically dead. After hearing my story, I figured, a few extra bystanders might be prepared if they see someone go into cardiac arrest. They’d think to themselves: “I need to jump in there like Chris did. I can only help.”
A couple hours after the AMA, someone with American Heart Association reached out to see if I’d be interested in telling my story for the cause. I was thrilled. Then, I got an email from a Newsweek reporter requesting to interview me. A couple days later, Fox News Saturday Night reached out to book a video interview. Wow, really?
On December 13, the publicity got a bit weird. I was alerted to a New York Post article (written by AI, apparently) with a misleading headline and an erroneous story stating that I’d suffered both a heart attack and the Lazarus effect. I immediately requested correction from the editor’s desk but never heard back. My husband and I half-joked, half-fretted about the little press crisis. At least nobody we know reads the New York Post, we consoled ourselves. But a day later, countless tabloid news outlets had published similar stories saying that I was “declared” dead and then came back to life. Many used the term “heart attack” interchangeably with “sudden cardiac arrest.” As you may know from a previous post entitled “Not a heart attack!”…that’s one of my pet peeves.
I’d like to use my own platform to clarify, once more: I didn’t have a heart attack. I went into sudden cardiac arrest. I’m here today because my husband started CPR and then eight first responders (who won awards for their efforts) did the opposite of declaring me dead. My heroes were too busy fighting for my life to start working up a death certificate.
Clinical death has a specific meaning and that’s why I used that specific term in my Reddit post. Clinical death means that the heart has ceased pumping blood around the body and that respiration has stopped. My husband called 911 because I was blue in the face and had no pulse. My body was starting to shut down vital organs very quickly. I learned at a CPR class recently that permanent brain death starts in the first 4 minutes. I am cognitively intact because my husband called 911 and then began CPR within that window of time (savior, indeed!) Then, rescue workers arrived incredibly fast and continued trying to resuscitate me. Even when I progressed from ventricular fibrillation (the most common rhythm in sudden cardiac arrest) to PEA, a non-shockable rhythm and usually a sign that the body is entering a more advanced stage of death, a report from that day states that EMTs continued resuscitation for another two minutes—until I miraculously regained sinus rhythm. I published a letter thanking those heroes in my local paper as soon as I understood what they’d accomplished. Even when I first left the ICU and was pretty out of it, I understood that what I’d experienced was the very opposite of “auto-resuscitation.”
The New York Post’s clumsy coverage masked the complexity and true wonder of my experience. The article made it seem like death is a Big Thick Black Line over which I had jumped back and forth instead of the messy, blurry, multi-stage process I now know it to be. Tabloids de-emphasized the difficulty of both resuscitation and recovery. By falsely ascribing a very rare syndrome to my case, they glossed over the fact that sudden cardiac arrest is anything but rare, with more than 400,000 occurring each year in the U.S. Meanwhile, they downplayed the most incredible thing about my story: that every link in my long chain of survival worked. Every little thing that had to go right did.
To shift the behavior that impacts survival rates, people must recognize both that sudden cardiac arrest is a leading cause of death and that we aren’t helpless in the face of it. Bystander education and willingness to act vary widely, and so do death rates. In one study that investigated regional survival to hospital discharge, U.S. counties ranged from 3.4% to 22.0%. The odds aren’t ever good that you’ll survive cardiac arrest, even if everyone does everything they can. But successful saves like mine are possible, and community response makes the difference.
Alice Gibbs at Newsweek worked with me to create a much more accurate and helpful article (read it here). I attended a video interview yesterday with Fox News Saturday Night (watch it this Saturday, January 6 at 10 p.m. ET!) I’m trying my best to use this sudden and surprising platform to encourage people to educate themselves. As I do so, I’ll measure my success not in books sold or newsletter subscribers, but by how many people comment that my story inspired them to take a bystander CPR class.
When ideas get amplified and broadcast quickly, they risk distortion. In the aftermath of my press flurry, I’ve had to decide whose opinion counts. For instance, when my husband didn’t love that I shared our Santa photo with Newsweek, I could stomach his dismay because it made his mom and his sister oh so very happy (sorry Chris, but I know you understand deep down!) After I saw the first few comments on New York Post, I resolved then and there never to look at online tabloid comments again—and I haven’t. I decided to focus my efforts on this newsletter and the people who care enough to engage directly and honor my experience. My subscribers are my inner circle in this fight for greater community preparedness and survivor support. With that in mind, I do want to clarify two points from the Reddit AMA:
I don’t want to die…there seemed to be confusion among some Reddit commenters about my saying I’m not afraid of death and that it was a peaceful experience. That isn’t the same as wanting to die and leave my husband, who is the biggest reason I’ve persevered thus far. Also, when I experienced suicidal ideation (which is extremely common in SCA survivors) I sought help.
Sometimes I’m glad to be alive for my own sake because life feels good, and sometimes I’m glad to be alive to help others because life feels hard. Either way, I’m grateful to be here.
After the AMA closed, U/Tek_Analyst asked: “Don’t understand what you mean by this? You stated in other comments that the whole thing is a blur and had no short term memory. How do you remember how you felt when you died?”
I can't possibly answer all the comments that came up after I closed the AMA (I can’t even read all of them) and it wouldn’t be fair to single this question out on Reddit, but it caught my attention and I thought it was such a good question that I wanted to reply to my subscribers.
The short answer is that I don't know if I “remember” how it felt to die for 24 minutes. If you want to approach my experience in a strictly scientific, cut-and-dry, linear fashion, you're going to find it pretty worthless and screwy. Who am I to talk? I was unconscious and then drugged heavily and lost my short-term memory, some of which I haven’t regained. I am the ultimate unreliable narrator. The best way I have to explain my “sense of peace” is that I have a gut feeling about the time I was clinically dead. Fascinatingly, there’s some consensus about this. Many of us who’ve nearly died describe a sense of overwhelming peace and other common features.
I can't explain "why" to you or make it make sense, but I don't fear death anymore and that seems telling. My initial bliss didn't last (and yeah, as one Redditor pointed out, maybe some of that bliss was ketamine-induced during my coma), but I still am fundamentally changed by the experience. I know, in the way you know who you love or what your purpose is on this earth, that my experience of death was friendly. You don’t need to be particularly conscious to feel that something was good or bad. Think about it: some people don't “remember” traumatic events because their brain disassociated to protect them from what they could not manage—but they may later have reactions and even extreme physical symptoms when triggers remind their bodies what happened. An experience doesn’t have to be remembered by our brains to be in us. As Van der Kolk wrote in The Body Keeps the Score,
“As long as you keep secrets and suppress information, you are fundamentally at war with yourself…The critical issue is allowing yourself to know what you know.”
My heart knows, my body knows, my "spirit" knows (whatever that means) what I went through in those 24 minutes even though my mind was checked out for the duration. And yet, I can totally understand Tek_Analyst’s comment. I'd probably have made that exact same comment before my sudden cardiac arrest.
A note about my book’s progress since the AMA: a 30-something named Alex on the West Coast read it after finding my post on Reddit. He not only wrote an outstanding review on Amazon.com but messaged me directly to thank me for writing the memoir. I can honestly say that whatever else happens, and whether or not I ever repay the full publishing costs, I’m so glad I published Independence Ave. I worked for 5 years on that short tome. Sometimes I wasn’t honestly sure why, but I felt compelled to finish. Now I know that I wrote it for some stranger named Alex, and for anyone else who finds it helpful.
Thank you all for what you do for my cause. Thanks for sharing my free posts, telling friends, and helping me make sure the world knows the difference between a cardiac arrest and a heart attack. We may have saved a few lives together these past couple weeks.
A note to brand new subscribers:
Warmest of welcomes! Thank you for being part of my community. Other than my recent holiday break, I usually publish weekly in real-time about my recovery process. Please feel free to peruse the full archive on my site. I highly recommend starting from the earliest post, “A Miracle, or a Rather Low Bar?” and reading them chronologically so you’ll have the full context.
