FLINT, Michigan—In her book, The Day I Forgot But Will Always Remember (Living with Sudden Cardiac Arrest), Brenda Brown describes the moment she died from Sudden Cardiac Arrest (SCA) as her midlife rebirth.
“I embrace my second chance at life,” Brown writes in her book. “The opportunity to more fully appreciate the people, things, and experiences many of us take for granted. The chance to live for today, knowing tomorrow may never come.”
Brown’s book is a story of shock and recovery, but it's also a story shared among thousands of people who suffer from SCA every day, according to the Sudden Cardiac Arrest Foundation. Personal essays, frequently asked questions, articles, case study links, and a list of songs to perform CPR to, comprise half of the book, distinguishing Brown’s work as a resource for SCA survivors.
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Published in 2019, the book first details Brown’s life as an athlete, mother, career woman, academic, and avid community volunteer all the while living through multiple health diagnoses that would impact her life leading up to the 10-mile Crim Race on Aug. 14, 2016.
Just after conquering the Bradley Avenue Hills with just 1.2 miles to the finish line, Brown’s heart would completely stop, parts of her face would be shattered in her unconscious collapse, and the moments leading up to her accident and the days following would be wiped from her memory.
When did you start writing your book? Brenda Brown poses alongside her sister-in-law with her book at a family gathering in December 2019.
I started writing my book in 2016 following my cardiac arrest. I was given a daily journal following my cardiac arrest in August 2016 by my ICU nurse, the one mentioned in my book. The cover to the journal was appropriately titled “I Can Do All Things Through Christ Who Strengthens Me – Philippians 4:13” spiral notebook to record my thoughts, experiences, and encounters during my hospital stay. After my discharge from the hospital, from November 2016 to December 2017 I wrote sparingly in my journal. I had recovered enough to return to work. I was tired at the end of my workday and pushed the journaling aside. The later part of 2017, I started researching about SCA and its causes. I officially made the decision to write a book, using my journaling and the research materials in 2018.
Because you were writing about the day when you lost your memory, what were some techniques you have used to recreate that narrative?
I still do not have any memory of this day or of the next three days that followed. I do not remember arriving at the race or parking my car. I do not remember meeting up with my group leader at the clock tower as arranged. I’ve been able to piece together the details from my team leader, the individuals who administered CPR, my family, and friends. What I remember about my death and returning to what we call “this life” is waking up at the U of M Hospital, wondering why there were so many people in what I thought was my bedroom at home. Some of the techniques I used and still use to help me with my memory was eating healthier meals, using brain training, memory and game apps. This allowed me to train my memory, concentration, and increase my cognitive skills. There are a number of free apps that I use such as Lumosity, CogniFit Brain Test & Training, Mind Games Brain Training, Solitaire, and Word Connect that helping me learn new habits of successful engagement with life. Since my SCA, I enjoy something every day even if it’s a little thing. Over time, as I add up the little things my new life gets much better. My book also includes a list of other free downloads from Apple that I use to relax, or to provide inspiration and motivation in overcoming my fears, and to persevere in my daily walk.
After reading your book there's no question that you are an athletic person. You were a runner, took cardio kickboxing classes all before your cardiac arrest. How did the experience of having a cardiology genetic study and other health diagnoses affect how you felt about the control you had over your own health?
My cardiac arrest made me realize that I have absolutely no control over my body. The reality is that the control I have over my body is limited to what I feed it, and how I dress it. The results of my genetic study revealed a genetic disorder that impacts two of my body systems: cardiovascular and neurological. As a result, as mentioned in my book, my physical activities are limited.
You include a number of intimate photos of your accident and recovery in your book. What do those photos reflect when you look back on them now?
As time goes by, three years now, the actual event is beginning to fade. So, when I look back at these photos, I am reminded of my near-death experience and of all my family and friends that rallied behind me. These photos remind me of how messed up I was both physically and mentally. These photos are a reminder of God’s goodness and how blessed I am to be alive.
You talk about stigmas related to mental health in your book and how addressing your mental health has helped you move forward. What are the ways being an SCA survivor affects your mental health and do you see a connection as to how it improves your physical health?
As a survivor, I experienced significantly elevated anxiety, depression, anger, and fear in getting back to normal physical activities. The hardest part for me now is accepting that things will never be like they were. I know I will not wake up one day and have everything back the way it was. I still have days when I am down and depressed and ask myself, “Why me? Why is this happening to me?” but then I think about the alternative and how I almost didn’t make it to see my family another day. Leading a healthy life means caring for both your body and mind.
Unfortunately, in today’s health care system, far too often physical and mental health services are separated. There is a correlation between good physical health and good mental health. I began to see improvement in my physical health once my primary care physician incorporated behavioral health as part of my treatment for my mental health. As mentioned in my book, the ever-present stigmas attached to receiving assistance from a mental health professional caused me not seek the help I needed until I was at the point of being so uncomfortable with where I was at mentally. Once I began to see my therapist, initially twice a month, I learned how to keep life issues in perspective thus maintaining my mental balance.
Brenda Brown works to raise awareness of Sudden Cardiac Arrest. You mention joining SCA groups online. What does that community look like? Is it large, small? Older and younger people? What sorts of questions are people asking when they are seeking out a support group like this?
I belong to two different SCA groups online. My one group, S.C.A. Survivor Group is just for SCA survivors and currently has 443 members. The other group, Sudden Cardiac Arrest Survivors, is for mostly SCA survivors and their family and currently has 4,442 members. Both groups are support and discussion communities dedicated toward increasing awareness about sudden cardiac arrest and its devastating effects on our society, sharing [members'] experiences, asking questions and offering support. Membership age ranges from 18 and older. I have seen posts from family members who have children younger than 18 that had a cardiac arrest. The discussion groups are also a place where survivors and families and other loved ones can ask tough questions about SCA [that I address in my book].
You included a number of essays by SCA survivors. How were you able to curate those stories and how do you think your book connects to the SCA community at large?
As a member of the SCA groups; I am able to read other survivors’ stories. After selecting the stories I would use in my book, I sent a note to each survivor via Facebook asking to use their story. Unfortunately, only a few replied back [at first]. I then reached out to one of the administrators [Carol Mathewson] asking if she would email a scripted note [from me] to the survivors for permission to use their story in my book. I had four survivors reply back, and the mother of a survivor.
I feel that my book connects to the SCA community because each survivor sees himself or herself through mine or one of the other survivors’ stories. They receive affirmation from our stories that yes, we are survivors; there will be struggles; to life adjustment and setbacks. My book also resonates with survivors’ family and friends by providing them with a better understanding and mindfulness of the challenges we deal with daily. Last, my book provides supportive resources to all readers.Brenda Brown crosses the 10-mile Crim finish line in November 2016.
In your book, you talk about how experiencing death firsthand has renewed your life priorities. What are the top life experiences on your bucket list?
Prior to my SCA, I was obsessed with my career and community volunteerism, that I neglected, to an extent, other aspects of my life such as my family, health, and spirituality. Since my SCA, I reprioritized what was top priorities in life. My priorities are taking care of myself, spending time and creating memories with my family, making time every day to pray and read my Bible, being supportive to other SCA survivors, and educating my community about cardiovascular disease, SCA, PTSD, etc.
Copies of Brown’s book The Day I Forgot But Will Always Remember (Living with Sudden Cardiac Arrest can be found in Barnes and Noble or at Hurley Medical Center and McLaren Regional Medical Center gift shops. Her book can also be purchased online on Amazon.
Today, Brenda Brown has a full to-do list for 2020 including authoring another book titled Single Mother Syndrome | By Choice or By Design | An Open Dialogue estimated to be released in May 2020. She also plans to volunteer with the “New” McCree Theater, the Martin Luther King Tribute Committee, and the campaign to elect Tabitha Marsh as judge in 2020.