I have been close to death for over 20 years. Death, this familiar friend and foe, has been walking step-for-step with me for the last 20 years as I have grown from a college student into a mom that already thinks about sending my 8 and 6-year-old sons off to college. In 1997, a friend in my closest social circle died of suicide – suddenly and without warning. I was a 21-year-old college senior and I remember feeling like the idyllic and protective bubble of my childhood and young adulthood had finally burst. It was my first experience with the death of someone close to me and it left me feeling fragile and vulnerable.
I was a psychology major at the time with no particular focus except knowing that I wanted to help people. I sat in the unfamiliar space of grief for several months and then did the next thing that felt right; I signed up to be a bedside, patient care volunteer for the hospice agency in my community. I decided that the best way to understand death and grief was to get as close to it as possible. I craved being in that space of acute sadness and humbling bravery.
The extensive, month-long volunteer training session included an in-depth exploration of our own experiences of grief, and mine was particularly acute. Once my training was complete and I sat vigil at bedside after bedside while strangers’ lives concluded, I enveloped myself in the exquisitely beautiful space between living and dying. Although I was in my early 20’s and brimming with youthful possibilities, I was already starting to understand the ways that death and grief mix with life and love to create a simultaneously beautiful and painful experience of being human.
Fast forward twenty-three years, and it will likely surprise no one to hear that I have worked in hospice and palliative care for every one of those years in various professional roles. I completed my master’s degree in social work and worked as a hospice bereavement counselor and social worker in hospice and palliative care in the community and VA settings. I ran grief support groups for children, teens, and adults and provided individual grief counseling for families of hospice patients. I became a registered nurse and think back with pride on my years as a hospice nurse when I created wound dressings from chux so family members could stand bravely by while patients bled out, or held a patient’s hand or their hair back on the bathroom floor until they were comfortable. I completed a master’s degree in nursing and have worked as a palliative care nurse practitioner in outpatient clinics, a cancer center, and on transdisciplinary inpatient palliative care consult teams at several large hospitals.
Death remains a daily part of my life; it compels me to compassionately care for others and demands that I make space for it in my personal life as I tend to all the big and complex emotions that come with this work. I remain humble to all of the mysteries of death, to both the unspeakable tragedy and joy that it brings to the experience of loving other mortal humans. Death has both broken my heart and lifted my spirit and there has never been a day that I doubted that my privilege of doing this work is how I live my life of service.
I tell you all this about my history and my calling so that I can publicly say this… death my old friend, you are too close this time.
As soon as news and images began rolling in from Italy, my sympathetic nervous system immediately began sending my brain and my body messages that I was about to be in grave danger. My friend’s death would be coming closer than ever before to me… to the peopleI love, and the patients for whom I care. I have struggled mightily for the past 4 weeks as I sort through whether to prioritize my work as a nurse practitioner, or my purpose as a mother and daughter. I have felt selfish, isolated, and un-collegial when I think of quitting my job when we run out of PPE. I have felt angry and scared when I leave each morning for the hospital, then return home and tense up when my 6-year-old son with saucer brown eyes and a heart-melting dimple tries to kiss me.
Although I have been always been hesitant to prescribe to the rigidity of Elizabeth Kubler-Ross’ Stages of Grief, I have found myself solidly experiencing denial, anger, bargaining, depression, and acceptance in the last month when all of my family members and I have been quarantined in our respective homes. There are times when I am incredulous that a virus is smarter and more cunning than the most brilliant scientists in the world. I am mad that I have to go to the hospital and put my family at risk even as they are trying to follow orders to stay home. During my nightly self-care ritual of looking at my sleeping children before I go to bed, I shed tears of worry and sadness for how this is affecting their world and how it could affect the trajectory of their lives if I become infected and die from the virus. COVID-19 is proving itself to be a formidable, unfair, and unflinching opponent and working as a healthcare provider has literally turned into a life-threatening situation.
I have been struggling with how to manage anxiety that I have never experienced before related to my own mortality. I am generally not a worried or anxious person because I whole-heartedly trust the mystery and order of the Universe. The only time that I have ever felt this unsettled is when I became a mom and the awareness of the importance of my own life crushed me under the weight of countertransference until I developed new coping frameworks at work. The last month I have been trying to sleep, cry, read, eat chocolate, get outside, and maintain my social connections as a means of coping. But when I saw this graphic below from (author unknown), I realized that I am spending nearly all my time paralyzed in the Fear Zone. As much as I want to move towards Learning and Growth, I stay solidly anchored in fear.
I frequently tell my patients and families that you have to make space to talk about what you fear most to keep it from controlling you. So I went deep into the place that I fear most and imagined life for my family and friends without me in it. When I challenged myself to think about this fear, it was not the idea of being gone that upset me most. It was the idea of suddenly being gone without my sons and family knowing all of the things that I wanted to share with them about the beautiful things in the world and within themselves.
I have heard many people reminding each other lately that ‘we can do hard things’ and here are the things that I did:
- I completed a new advance directive using the Five Wishes document that is free this month and talked about it with my husband, sister, and mom who I designated as my surrogates.
- I went through the bookmarks on my phone and computer that I had listed as “Parenting” or “Inspiration” and compiled a list of advice that I want to give my sons should I not be around to tell them.
- I printed off articles from the internet with resonant advice from mother-to-son about teenage and young adult years and labeled them accordingly for my husband to share when they have an appropriate developmental understanding of the content.
- I printed off the Desiderata and shared the verses that mean the most to me and why.
- I printed off an article about the importance of dads teaching their sons emotional intelligence so I can inspire my husband to carry on this important work with our sons when I am gone.
- I wrote letters to both of my sons to tell them about the moments that I fell in love with them and all of the magical reasons why they are unique and powerful. I reminded my sons that if I die, their lives will not be defined by the sadness of losing a mom. They are free to live lives of joy, and laughter and purpose because tragedy has deepened them, but has not defined their boundless spirits and possibilities. The loss will be a part of their story, but not their whole story.
- I wrote a letter to my husband to thank him for our life together and for loving me even when I made it hard. And I told him to find love again because he deserves it.
- I went through my phone and made an album of my favorite pictures of my boys and I so that they could see that I loved them desperately enough to coach their soccer teams, start playing hockey so we had something to bond over, learn about every dinosaur from each geologic time period, and teach them to wonder at every snowflake and mountain that nature provides.
- I copied pages of books from my favorite authors and left them a journal where I paste all of my favorite quotes/pictures/songs/thoughts so that they can continue to learn about me as they grow older.
- I shared my thoughts with all of you.
I compiled all of these documents and instructions into a folder that I tucked into a box with an intention of gratitude. I told my husband where to find the box should he need it soon because of COVID-19, or at any point in the fragile and unpredictable future. I prepared my legacy so that if COVID-19 would take my life, my most important feelings are expressed, and my most important work as a mother will continue to go on after I am gone. My children will continue to have a relationship with me that, although it is very different from what we used to have, is still accessible to them through their heart and spirit in a way that is uniquely their own.
In working my way through this darkest of space, I was able to breathe again and regain my light. I felt anxiety gently release its grip and felt new resolve to continue to show up for my patients who are also scared and vulnerable. In sharing this with you, I feel a sense of purpose and peace that in all honesty, I have been seeking for years.
Take care of yourselves and take care of each other. And remember the lesson that death comes to teach us… trust that in darkness there is always light.
Kendra Deja
Palliative Care Nurse Practitioner and Mom
April 8, 2020
