On this day two years ago, my perfectly healthy husband had a sudden cardiac arrest in his sleep. I fought back death for ten long minutes with no weapons but my hands and phone. I watched the color change and eventually drain out of his body.
I heard the sounds of his brain stem struggling to suck in oxygen. I heard his body slamming against the hard wood of our living room floor as electricity ripped into his heart. I had the difficult conversations with our 8- and 5-year-old children.
I waited the agonizing days at home, separated from him in his greatest need, unable to comfort or be comforted. I was responsible for decisions about his treatment. I was responsible for trying to get updates about his condition and for sharing those with family members.
I celebrated when he was responsive, when he followed commands, when he stood up and walked, when he came home. I answered the hundreds of repeated questions while his memory was stuck in a loop. I suffered the trauma, the shock, the flashbacks.
That cardiac arrest didn’t happen in my body, but it very much happened to me, too. Patients are not cases. They are people, who love and are loved by other people. Their lives are often intertwined, impossible to try to extricate into separate bins of “patient” & “not patient.”
Don’t forget those other people. Some of them are co-patients, co-survivors. The medical event happens to them, too. They need you, too.
Every time you enjoy a @DGlaucomflecken video, I hope you’ll remember what made it possible. I hope you’ll see, hear, and help the co-patients, caregivers, and family members you encounter in your work. I hope you’ll share with them your humanity. ❤️🩹
A piece I wrote for @JCardFail, detailing what happened to me after I woke up to @DGlaucomflecken dying in bed.
“My husband had v-fib resulting in SCA. They explained what that meant and asked if I had any questions. ‘Yes. What do I tell our children?’” onlinejcf.com/article/S1071-…
I didn't know how to explain to my family and friends what I was experiencing, so I used a name for the place I had gone. I called it the Quiet Place.
It was a dark and empty chamber where no words were spoken or understood. If they were there, they flowed in and back out like a silent River Styx running through my brain. It was a place of grief and distress.
The term “caregiver”needs work. It’s a hospital-centered term, by way of the patient. It describes the caregiver’s *work* in relation to *someone else.* It ignores the real and myriad ways the caregiver lives with and is affected by the disease daily. 🧵 1/8
Ironically, the term #caregiver completely ignores the caregivers themselves. Yes, the patient’s needs should be centered by the medical team. Yes, caregivers should be acknowledged as important members of that team. But… 2/8
…many caregivers’ mental and physical health is directly affected by the very same disease, condition, diagnosis, etc. What of their needs? Why is the #healthcare system at large ignorant of the treatment *they* need? 3/8
I’m not sure how to start this. I’ve never really talked about it. And maybe that’s the weirdest thing about being a cancer caretaker. You feel guilty for having a hard time, because at least you don’t have cancer. Well. Here goes.
When I met @DGlaucomflecken in college, that was it. I knew I wanted to spend my whole life with him after six months. No rush - we had our whole Iives ahead of us - but I knew that was it for me.
We graduated together. We moved across the country and went to the same school for grad school / med school. We got married. I graduated, he still had a couple of years to go. As good a time as any to start a family, so we did.