In the Cardiac Intensive Care Unit, coping with the shock of double bypass surgery to repair postpartum spontaneous coronary artery dissection (SCAD), I kept having an overwhelming sensation of being impaled. Particularly late at night. In the dark, I would struggle with sharp, agonizing pains that seemed to go straight through me, into my back. Not truly understanding what open heart surgery entails (for it was my first-ever surgery), I didn’t realize it was the chest tubes, placed to drain fluid. When the mattress undulated to help prevent clots, I could barely stand the pain.
While waiting for the nurse to bring relief, I would challenge myself to not feel the pain by thinking about a truly remarkable man and Vietnam-era prisoner of war, Paul Galanti, Cmdr. USN (ret). Galanti was shot down in 1966 and held captive by the North Vietnamese in the “Hanoi Hilton” prison camp for almost 7 years. He endured unspeakable torture. When I was a teenager, I babysat the Galanti’s children, and although he and I never discussed his time in captivity, he gave me open access to his journals and notebooks. I would pore over them each time I babysat, trying to grasp the mental strength — let alone physical endurance — of Galanti and other POWs.
Nearly 25 years later, I concentrated in my hospital bed: what I am going through is nothing compared with their ordeal. If they could withstand torture as POWs, I could make it through this. I distracted myself with stories I had read in his journals, stories of determination and ingenuity. Mental toughness kept them alive. I was just waiting for pain meds.
Solitude can be torture too, and those long nights alone without my family had a lasting effect. Back at home, my recovery from SCAD and bypass were physically difficult, but also spiritually and emotionally depleting as well. Because of complications, I needed a lot of help the first year. But no one around me could understand my sense of outrage at what had happened to me. Even worse, they tended to agree with my cardiologist, who said, “Just be glad you’re alive.”
At my first follow-up appointment, I had been ready with questions: “What causes SCAD? How do I prevent another from happening? What about my sons — will they have dissections too? What does the research say?” My cardiologist replied, “There is no research.” I literally thought I’d heard incorrectly, so asked, “What do you mean?” The world stopped — I felt it — when he said, “There’s nothing to research. You either die, need a heart transplant, or get lucky, like you.”
In time, my outrage morphed into resolve — a twist on don’t-get-mad-get-even. Just because doctors said it was rare, didn’t mean it was rare. Throughout history, women have died in childbirth, and our various cultures just accept it as an occupational hazard. Perhaps SCAD was why all of these women died. Maybe the answer was right in front of us, but no one was looking at the obvious. And if I had survived, others had too. I just had to find them.
My search was another time I remembered Cmdr. Galanti’s experiences. At various points in captivity, he was in solitary confinement and at others, he and other POWs were housed in small adjoining cells. They were not allowed to communicate and punishments were severe, gruesome. But the men created a communication system through a tap code on the cell walls. Without knowing who was on the other side of the wall, they “spoke” and supported each other.
It was a similar sensation when I began my Internet search into SCAD. I was totally alone, but I KNEW others were out there. I couldn’t see them, but they were there. Tapping away on my keyboard into the vast unknown of the Internet, I was determined to find SCAD survivors. It didn’t matter how long it took, I just knew I had to find them and someday convince someone to research SCAD.
At first, I found outdated abstracts or “ask the doc” message boards. But when I stumbled upon the WomenHeart Support Community, a slow trickle of SCAD patients turned into a steady stream of motivated survivors. When Inspire.com began hosting the WomenHeart site in 2007, the increase was almost overwhelming because it proved that my hunch was correct: we were all “out there” tapping away, desperate to be heard.
While forging relationships on the community, I wasn’t aware of the term “social media.” I would talk with my husband about “my SCAD friends” or “my online friends with SCAD.” They were just as real and important as any “in-person” friend in my life. Even today, our taps on the cell wall usually don’t translate to our families or social circles. But in the world of social media, we truly communicate and gain understanding of our fears, confusion and struggles.
In learning about www.webicina.com, I was awestruck by its mission: further empowering patients and medical professionals with free social media content in their own languages. So far, my SCAD friends and I have communicated in English, but I’ve wondered over the years. How can I reach the SCAD survivors in countries around the globe whose languages I don’t speak?
Social media turned out to be critical to my recovery, and through webicina, it may well open up a new universe of SCAD exploration for me. I’m ready.