By Lisa Salberg
It started before I was born in 1953 and again in 1963 but for different reasons. It struck again in 1990, 1995 and 2014. What I am talking about is the sudden and unexpected loss of a family member. Four of the events were strikingly similar, three have the same cause, one was a different disease and one was simple bad luck.
My Grandfather, holding my father with Aunt Patty – approximately 1939
Aunt Patty and Uncle Ray approximately 1962
In 1953, my grandfather suffered a sudden cardiac arrest, we did not know it at the time that it was caused by hypertrophic cardiomyopathy. In later years HCM would take other family members including my uncle in 1990 and in 1995 my sister. They were all young my grandfather was 43, my uncle was 48 and my sister was 36. In 1963 my paternal great Aunt died in a car accident at the age of 27 a few days before Christmas. The scars that the sudden and unexpected loss of a loved one leaves somehow and amazingly transcend time. Leaving behind an imprint on the family even affecting those who were not even born at the time of the death.
In 2008, I lost my father to complications from HCM but it was not a sudden death. We have the opportunity to say goodbye, to laugh together one more time, to bring him his favorite meal and for those he loved in life to be able to spend the final moment with him and say thank you for being part of my journey. My father’s death was one of the most beautiful experiences I have had the opportunity to witness in life.
Mom and Dad, Hawaii 1982
In 2014, two weeks before Christmas, my mother died suddenly and unexpectedly at the age of 77. There was no goodbye, there was no one last laugh, there was no last favorite meal, no opportunity for anyone to say thank you for being a part of my journey. She was simply gone. With the holidays around the corner and family traditions left undone – I was thinking constantly of my cousins who were little children when their mother passed on December 23 and how the holidays must have been for my Uncle Ray for all these years. This time it was my mother gone at the holidays, at least I had 46 years of memories to hold, and my daughter only has 19 Christmas’s with her grandmother.
History repeats itself in cruel ways – and frankly, it must stop. My niece had to witness both her mother and grandmother pass away at home from sudden cardiac arrest. This is simply not fair. It had been nearly 20 years since the last sudden and unexpected death in our family. However, seeing my mother in her home on the floor brought back the memories of my sister, my uncle, my grandfather and my aunt. I am not quite sure why our family has been subjected to these sudden and unexpected deaths over multiple generations and I am not sure how and when it will ever end. While we know hypertrophic cardiomyopathy runs in our family and those who are impacted in this generation and the next are protected with implantable cardioverter defibrillators – my mother was not part of that genetic misprint. I am not quite sure what the odds are of sudden cardiac arrest from different root causes affecting the same family but yet again it appears our family won the lottery that you just don’t want to win – sudden cardiac arrest struck again.
I normally write things that have a positive spin and show how to make things better. However, right now there is no way to make this better. Old wounds are open, the frailty of life is abundantly apparent and once again, our family must restructure, rethink and rebuild. I would never wish pain-and-suffering of a protracted death upon anybody however, I wish we all had the chance to say goodbye – thank you- I love you and I see you again someday to those we lose. Maybe it is a bit cliché to suggest we live every day as if it were our last, to speak from our hearts even if it’s difficult or to appreciate our friends and family just a little bit more. The human condition is frail, temporary and beautiful. In our family, we are reminded of this about every 10 years from 1953 to 2014. Maybe I am writing this in hopes it breaks the curse and my family no longer needs to know this type of pain.
While I know, my mother lived a long and productive life I wish she did not leave so suddenly. There is an unspoken and in my opinion, largely overlooked issue that we really need to discuss and those who have never experienced a sudden cardiac arrest for loved one may never fully understand. The brutality of a sudden extraction of a loved one from your life to an unseen enemy shakes you to your core. When it hits twice in the family it stings that little bit more. While some people may think it gets easier to continue to lose people in this manner does not it gets harder. I could quote statistics on posttraumatic stress, depression, anxiety and other clinical terms for the emotional unrest and pain but that is just too analytical for me today.
As I sit here and think about the year ahead I wonder how to get through without my mother and I have to admit I am constantly on guard and in fear it will happen again to somebody I love.
I think my dad was given an amazing gift and gave us one to and I hope many others receive the same gift of closure. While we all have our own belief systems, and I would never push mine on anybody else, I believe my families together somewhere else waiting for the rest of us to join. But until we can be together again those of us left here have to process this pain and all that goes with it.
To those of you who have lost a family member to sudden cardiac arrest I think you will see a little bit of yourself and your family and what I have written. To those of you who have never experienced sudden cardiac arrest stealing a member of your family or friend consider yourself blessed but not immune. Please take a moment to learn the risks of sudden cardiac arrest from HCM and other causes in both the old and young and encourage those you care about to seek care from a qualified cardiac professional.
My big HCM heart is broken in new ways. However, I can say the love, support and friendship from both my friends and family have always been what carries me through the darkness and has at some point let me see the light again. Until the light appears I wait and remember those I have lost.