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Words to Leave By: Bridges Out of the Quiet Place

Published:September 18, 2022DOI:https://doi.org/10.1016/j.cardfail.2022.09.003
      I remember many things from my husband's sudden cardiac arrest at 34 years old – the guttural, panicked sounds of his agonal breathing in our darkened bedroom; the timbre of his voice as a pocket of air passed through his vocal cords in response to my chest compressions; the sight of his body turning gray and the sound of it slamming against the floor with the first shock from the defibrillator.
      I remember the relief when he woke up the next day neurologically and physically intact; bringing him home two days later; answering his questions, repeated on a loop, about how he temporarily died.
      And I remember what it was like to exit crisis mode only to lose my words. Once he came home and we were meant to move on with life, I had extreme difficulty following or participating in conversations. My eyes were blank, my response time delayed, and it felt like swimming through molasses just to form a sentence.
      I called it the Quiet Place.
      • Flanary K.
      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.Those of us who have survived trauma need our healthcare providers to meet us in our Quiet Place. We need them to find their way into that dark chamber, light a candle, and fill it with the words that build a bridge for us to walk out.”
      None of our healthcare providers offered such words to me, but I found them anyway. Now I offer them to you, in the hope that they can help someone else. These were the words that built my bridges (figure 1):
      Fig 1
      Fig. 1A guide to communicating with co-patients and lay responders after a cardiac event.

      Words That Explained

      Like most out-of-hospital cardiac arrests, my husband's happened at home. I am not a medical professional and was not prepared for what I would see, hear and do that night. Witnessing and responding to his arrest made my head swim with questions about those disturbing scenes.
      I couldn't even articulate what those questions were until I came across their answers on my Twitter feed. Paul Snobelen, a Canadian paramedic, tweeted an excerpt

      @PSnobelen. A thread of what I share with Lay-Responders after acting to Save a Life, based on the real-life questions they ask. Feel free to use this info in your courses, talking etc. Posted September 2, 2020. Accessed June 18, 2022. https://twitter.com/PSnobelen/status/1301187168153591810

      ,

      @PSnobelen. More common Questions and Answers.Posted September 2, 2020. Accessed June 18, 2022. https://twitter.com/PSnobelen/status/1301187168153591810

      from his Lay Responder & Bystander Resource Guide.

      Snobelen PJ. 2020 Sept. Lay Responder & Bystander Resource Guide. Retrieved from https://www.peelregion.ca/paramedics/defibrillator-program/_media/lay-responder-guide.pdf

      Part of a larger Lay Responder Support Model,
      • Snobelen PJ
      • Pellegrino JL
      • Nevils GS
      • Dainty KN
      Helping those who help.
      his guide answered all the practical questions that my brain kept ruminating on:
      • What were those strange sounds? Why did he make them?
      • Why did I react the way I did? Isn't that what anyone would do?
      • People said he “coded”; what does that mean? Had he actually died?
      • What about me? What happens now? What do *I* do, and will I ever be okay again?
      There is woefully little support for lay responders, bystanders and family members whose loved ones experience cardiac arrest. Even in hospitals, those who come in with a cardiac arrest patient are often forgotten, neglected or even treated poorly.

      Douma MJ, Ali S, Kroll T, Bone A, Early S, Myhre C, et al. Family-centred cardiac arrest care project: exploratory interviews 2022. osf.io/qunsh.

      Although more work is desperately needed, I consider the Lay Responder & Bystander Resource Guide the current gold standard for providing the right kinds of information to those who need it so badly.

      Words That Named

      Names and labels have power. They take twisting, ambiguous thoughts and feelings and tie them all together into 1 coherent package. Naming something allows you to wrap your head around it. It offers a way to tell people about it. You can convey what it's like and explain why it's important. You can find others who are also stamped by that name and connect on a basic human level to begin to heal.
      Names are diagnoses. Without them, it is difficult to move forward.
      In the work of Drs. Katie Dainty and Kirstie Haywood, I found a label for my role in their concepts of forgotten patients and co-patients/co-survivors.
      • Haywood K
      • Dainty KN
      Life after cardiac arrest: the importance of engaging with the “forgotten patient.
      Cardiopulmonary resuscitation (CPR) is a primal, forceful endeavor that is disturbing to witness, especially for those of us who are not professional health care workers or first responders. Performing 10 minutes of CPR on my healthy 35-year-old husband while our young children slept in the next room was nothing short of traumatic.
      I didn't know how to share with people what I felt. I couldn't explain why the whole event had bothered me so much. After all, I wasn't the one whose heart had stopped beating.
      These labels gave me a framework to understand and communicate what had happened to me and why it hurt so much. It was because I had been a patient too, but in a nontraditional sense. I had been overlooked by the health care system, and my needs had not been met. These terms offered perspective on how deeply the experience had impacted not just my husband, as the patient, but me, as the responder, family member, and co-patient.
      They were the only “diagnosis” anyone offered me, and they allowed me to move forward.

      Words That Validated

      Six months after my husband's cardiac arrest, I read Dr. Rana Awdish's book, In Shock.
      • Awdish R
      In shock: my journey from death to recovery and the redemptive power of hope.
      It helped me heal by putting language to deep truths that I had experienced only as emotions. Her words mirrored the painful, ambiguous, complex experiences I was processing, particularly around the difficult experience I'd had with the health care system while my husband was in the hospital.
      It was therapeutic to see some of my own emotions and half-formed thoughts articulated so beautifully on a page. Dr. Awdish's words validated the pain I carried from gaps in our health care system. I knew that I was not alone, because she—as both a doctor and a patient—saw them, too. The pages of that book told me that someone else knew how it felt to be failed by the very system that cares for us in our most vulnerable moments. Her pen turned pain into beauty and offered hope that things could be better, despite it all.
      These 3 kinds of language—words that explained, named and validated my experience—laid down a path for me to process my trauma and walk out of the Quiet Place. I will never be the same as I was before responding to my husband's sudden cardiac arrest. But these were the words that guided me out of the darkness and back into light.
      The act of healing requires more than touch or tools or technology. It requires empathy, compassion and, above all, humanity. As medical professionals, your words can sometimes reach even further than your hands. Use them well.

      References

        • Flanary K.
        The Quiet Place.
        J Card Fail. 2021; 27: 1300-1301https://doi.org/10.1016/j.cardfail.2021.10.002. PMID: 34749929
      1. @PSnobelen. A thread of what I share with Lay-Responders after acting to Save a Life, based on the real-life questions they ask. Feel free to use this info in your courses, talking etc. Posted September 2, 2020. Accessed June 18, 2022. https://twitter.com/PSnobelen/status/1301187168153591810

      2. @PSnobelen. More common Questions and Answers.Posted September 2, 2020. Accessed June 18, 2022. https://twitter.com/PSnobelen/status/1301187168153591810

      3. Snobelen PJ. 2020 Sept. Lay Responder & Bystander Resource Guide. Retrieved from https://www.peelregion.ca/paramedics/defibrillator-program/_media/lay-responder-guide.pdf

        • Snobelen PJ
        • Pellegrino JL
        • Nevils GS
        • Dainty KN
        Helping those who help.
        Circ Cardiovasc Qual Outcomes. 2018; 11 (Epub 2018 Sept 10. PMID: 30354553)e004702https://doi.org/10.1161/CIRCOUTCOMES.118.004702
      4. Douma MJ, Ali S, Kroll T, Bone A, Early S, Myhre C, et al. Family-centred cardiac arrest care project: exploratory interviews 2022. osf.io/qunsh.

        • Haywood K
        • Dainty KN
        Life after cardiac arrest: the importance of engaging with the “forgotten patient.
        Resuscitation. 2018; 128 (Epub 2018 May 1. PMID: 29727707): A1-A2https://doi.org/10.1016/j.resuscitation.2018.04.034
        • Awdish R
        In shock: my journey from death to recovery and the redemptive power of hope.
        Picador, New York2018