Another Chapter

It's taken a full year, but I'm finally ready for one.

Death is normally associated with endings. But for the lucky few who survive sudden cardiac arrest (SCA), a brush with death can also be a beginning.

Next Wednesday marks the year anniversary since my SCA, and I consider that anniversary my truest birthday.

I asked in a couple of online SCA support groups what surprised other survivors about their first year of recovery. One person wrote: “That the mental stuff is so much harder to overcome than the physical.”

On another support group platform, the facilitator created a casual poll to see how many survivors experienced PTSD after their SCA. 85% said they did—although professional sources such as NYU Langone’s Parnia Lab say the proportion is much lower, only about 20%. What might account for the discrepancy? For one thing, those of us answering the poll are a subset of survivors able, willing, and feeling the call to engage in support groups. Also, a review of mental health outcomes states that up to 45% of survivors experience depression and up to 61% experience anxiety after an out-of-hospital arrest. In an interview on the Heart Warrior Project, Dr. Samuel Sears explained how anxiety and depression symptoms tend to merge together in ICD patients. Combine that with the fact that over half of survivors experience severe fatigue for up to a year, and you begin to see why most of us report feeling some kind of mess.

I hear from long-time survivors that the psychological impacts get better with time. I believe them, given the progress I’ve already made in a single year. In the course of twelve months, I went from deep depression, social withdrawal, and frequent suicidal ideation to having occasional bouts of panic and anxiety. I can now touch my surgically implanted defibrillator lump without recoiling and wanting to puke. I still cry a lot more than I did before the arrest, but tears aren’t completely hijacking my life on a regular basis.

New beginnings. Sunrise over the Atlantic - Oak Island, NC

I have to ask myself, though…how much of this progress is psychological, and how much of it is circumstantial? When my mental health was lowest, so was my physical wellbeing. When I was having seizure-like episodes on the daily, and heart meds caused dangerously low blood pressure, my sense of doom and hopelessness made good sense. I had no control over my body, and doctors weren’t able to help me. In fact, their go-to meds tended to hurt. Those were scary times, and if I was back in that boat now, I’m not sure I wouldn’t feel just as low. Or that feeling on edge wouldn’t be, well, rational.

I did six months of therapy for PTSD, and I can’t express how important it was for me to have a safety plan in the early days. As my body miraculously started repairing itself and I came down off seizure meds, I began feeling better. Increasingly, I brought questions and curiosities to my therapist that she couldn’t help me answer. Therapy is amazingly useful when your own thinking is your main problem. But what if your thinking isn’t disordered? What if your thinking is natural, functional, and reflective of your current reality? What if reality itself gives you the spins? I believe this predicament requires a spiritual and/or communal answer. I don’t have it, but I sit quietly a lot and try to listen for it.

A lot was broken by my SCA. I guess it shouldn’t be surprising that it takes a hodgepodge of approaches to build the path forward.

If you or someone you know is in a broken spot: hold on. I’ve been there, and it felt endless—but I’m not there now, so apparently it wasn’t. There’s nothing wrong with you for crumbling a bit when facing a chronic diagnosis, a body that’s downgraded from its former abilities, or a mind that’s been tortured beyond repair by traumas nobody is designed to bear. There’s nothing wrong with you for feeling hopeless, or for temporarily succumbing to grief. To the extent that I tried to tamp down my feelings, keep working and performing, and fight my body—I failed harder and faster, and convulsions won. It’s super annoying when people say that the only way out is through. It’s extra annoying because it’s true.

Time probably doesn’t heal all wounds, but it’s one more tool in my eclectic toolbox. I don’t know how I’d feel today if my physical health had continued declining. By the grace of God, Nature, and the Universe, that isn’t what happened to me. It also isn’t what happens for most survivors of sudden cardiac arrest. Typically, we humans are pretty good at adjusting. Cells turn over. Medications remodel our hearts after the damage wrought by cardiac events. Organs repair. Muscles get a little more oxygen and grow stronger. Steadily, we build new habits and ways of being. Gradually, we get healthier and more whole. In this process, I’ve lost my ability to separate my mental from my physical wellbeing. I have no magic formula for recovery. I just know that my system goes (inches) in the right direction the more integrated it gets.

I’ve tried in this telling, time and again, to pinpoint the moment where everything starts to fall apart. Everything, meaning me. But there’s also the opposite, where some little nut cracks open inside you and a tree starts to grow. Even harder to nail. Because that thing’s going to be growing a long time before you notice. Years maybe. Then one day you say, Huh, that little crack between my ears has turned into this whole damn tree of wonderful.

—Demon Copperhead by Barbara Kingsolver

I spent a lot of the past twelve months grieving the ending that February 7 became, and the life, privileges, and abilities I lost. As my first SCA birthday approaches, I find that I focus increasingly on the gift of a new beginning. It really hit me last week that even on bad days, I’m finally acting like someone who is ready for another chapter and who thinks she might get one. For a long time, I didn’t want to get my hopes up. Now, I dream about alternate futures for me and Chris—futures where we live by the sea and eat fish every day, futures where there is hardly ever freezing rain, futures where we take up tennis. I may have lost the career and trajectory I was on previously, but I have ceased to want them back. I’m more comfortable being my full self, focusing on home and family. I’ve birthed a new social self by opening up about my health journey, writing, and networking with other survivors. I know from experience that it takes years for such hefty rewrites to bear fruit. This year, it was enough that I got started.

I am still more aware than the average 39-year old how fragile a life is. I still get panic-level nervous every couple days about being unemployed. What if something crazy happens, etc etc? I still get way too tired every night, way too early. My system was stressed beyond full repair and I’ll need to take extra care of it from now on. It’s a big step, though, to stop feeling that today will probably be my last. I mean, sure, it might be. But I’m ready to live as if the odds are on my side.

I’ve heard from other survivors that the first year is a blur in hindsight. I know plenty of people who go on to have additional cardiac events and setbacks. I know this because they’ve told me—because they’re still around to tell me. I don’t expect a smooth, flat road. But I do think there is a road leading out of today and into tomorrow, and it’s no longer a road filled only with fear and dread.

One year down. How many to go? That’s anyone’s guess. I just know that there’s another chapter, and that I have some small say in writing it.