LIFE, DEATH AND IN BETWEEN

Death comes for all of us regardless of age.  In 2022, about 3.27 million deaths were reported in the United States and here’s a breakdown of the causes as reported in 2021: The top 10 causes accounted for almost 75% of all deaths in the U.S. in 2021.

• Heart disease (695,547)
• Cancer (605,213)
• COVID-19 (416,893)
• Accidents (224,935)
• Stroke (162,890)
• Chronic lower respiratory diseases (142,342)
• Alzheimer’s disease (119,399)
• Diabetes (103,294)
• Chronic liver disease and cirrhosis (56,585)
• Kidney disease (54,358)

In 2022, an estimated 49,449 people died by suicide, and 20,138 died by gun violence excluding suicide.  Among those killed by gun violence in 2021 were 2500 children, (aged 0-17) – a 12.7% increase over the previous year.

None of us is a statistic regardless of how we may end up contributing to the list. I will probably end at the top with progressive heart disease, inherited from my grandmother and father.  Thus far, medical technology and interventions have given me a few additional years for which I am enormously grateful. I came close to being in another category in a car wreck in 1956 driving home from college. Many of us have had brushes with death that give us a different perspective from those who see it only as something undesirable in the future. There are simply no guarantees about how or when we might die.

Statistics mean little to a family who suffers through the dying and/or death of a loved one.  Each death is personal and even when an entire community is struck by multiple deaths, every one of those who died had a name, a personality, and usually a family who grieves the loss. There is a wide variety of rituals attending to death, from traditional faith practices of the world’s major religions to the tribal ceremonies of many indigenous peoples.  A celebration of life service has replaced many funeral services and whether it’s a memorial service or a funeral service, the common denominator is death.

When a member of our extended family was recently lingering between hanging on and letting go, this seemed as good a time as any to share a few more of my thoughts and experiences about this touchy topic. Many seem afraid to discuss dying and death openly or maybe not at all until they have to because of “circumstances beyond my control.”  Let’s start with this.  Dying and death are inevitable, part of our lives from the first until the last.

I remember the first time someone I loved died and how that affected me and what, if anything, I learned from that experience and many of those that followed.  My paternal grandmother, Lizzie Siler Gruber, died in 1952 at age 64 from complications with her heart and kidneys.  I was 14 and had spent many good times with her on the farm in my earlier years and have a clear image in my mind, tending her garden, feeding her chickens, gathering eggs and being the consummate cook and queen in the big farm kitchen.  She loved her family, and their farm and she shared herself generously.  When they laid her in a coffin in the formal dining room and we looked at her dressed in her finest and everyone left except for the immediate family, I saw my grandfather cry for the first time as he said goodbye. Then we went to the little church in town for the funeral and she was buried at Twin Creek Chapel cemetery where several generations of my family on both sides were put into the ground.

What I learned from that as well as the death of both my parents later on, my Dad 44 years ago at age 67 and then my Mother 15 years ago at age 96, is that I am not interested in being laid out for viewing and then lowered into an underground space to finally decompose completely.  I have made my preferences and decisions known to those who will be responsible in my last days.  Advance Directives and Living Wills are legal instruments and I choose to have those closest to me who know my wishes to make the decisions.  Having discussed dying in details with them, my intention is to make it easier for my family and less of a burden whenever that time arrives.

What I have seen and have shared with many families that is perhaps the most challenging is the death of a child which seems to be out of alignment with what most people think of as the normal sequence of life and death.  What I have tried to say to those parents is that perhaps they can find a way to be grateful for the time they had whether a few years or many.

I recall walking down the dark hall of a hospital with a mother whose 14-year-old had just died of leukemia.  We walked side by side, silently and slowly, not a word spoken between us. At the end of the hall in the morning light, the mother turned to me, smiled, and said, “I want you to know how grateful I am for those 14 years we had together.”  I was speechless.  After that, over the next 50+ years I had numerous students who died or were killed and I saw the pain and agony on the parents’ faces and heard them asking questions through their tears that had no answers. Top of the list was, “Why?”  In time, I tried to help them reframe the question to something more like “What will you make of this life experience?”   We know what some of the families of the students at Sandy Hook, Parkland and Uvalde have done to help stem the tide of gun violence in the U.S.

A couple whom I knew had 3 young children all killed in a tragic car accident with a neighbor while going to get ice cream.  The mother was told that because of her diabetes, she should not get pregnant again.  She and her husband ignored the advice and had two more beautiful children and told them the story of their first family.

In the context of Being Mortal: Medicine and What Matters in the End  by Atul Gawande, we have an opportunity to assess the quality of life factor closer to the end and plan for how we wish to deal with end of life matters as we have come to know them when we have the opportunity.  One of my questions is why do people want to prolong the discomfort, pain and debilitating conditions leading up to dying and death?  There are numerous reasons besides fear which plays a large part in how people regard death.

The medical community often goes to extraordinary lengths to extend the life of someone on behalf of a family who looks at the potential loss of a loved one and doesn’t want to see the end.  Besides ventilators, ICU, surgeries, medications, and other means that may forestall the inevitable for a while longer, what do we see in the aftermath as some try to hang on rather than let go?  Never mind the expense or the high costs of treatments, what about the human toll on emotions and the stress on the survivors?

We have done a poor job of helping children and adults look at death differently and see it as the last step on the road to freedom and peace.  I like and use John Henry Newman’s prayer, “ O Lord, support us all the day long… until the shadows lengthen, and the evening comes, and the busy world is hushed, and the fever of life is over, and our work is done. Then, Lord, in thy mercy, grant us a safe lodging, a holy rest, and peace at the last.”

I have seen far more deaths than most people, partly because of my professional practices and because I get called on to help people walk through this valley of the shadow of death.  When I say I “lost” students or colleagues or family members or friends, I did not lose them nor have I forgotten them, their names or their families.  I have not counted how many although the total is well over 100.  Does that make it any easier?  Not at all.  I think of the children who had a terminal illness such as cystic fibrosis or leukemia, some who committed suicide and others killed in accidents.  I think of some adults I have known well in mid-life who left spouses and children behind to mourn and grieve.  Then there are the oldest ones in their 70’s, 80’s and beyond who struggled to hang on either because they were afraid or because they thought that’s what their families wanted.  I had a good friend die at the beginning of this year who was sick and incapacitated an entire year before his death.  The age of people is not a consideration.  Their health and well-being are of prime importance.

There is also this. While we might learn something new about dying or a good death, it’s more about living fully in the present and to what extent that is possible.  I will not judge others whose views are different from mine. I will remain committed to helping them in whatever way I can.  I may respectfully disagree with extending life beyond what seems reasonable and adds to the suffering and pain instead of relieving it.  There often comes a point in time when we know with a fairly high degree of certainty, that things are going to get worse, not better.  How much worse or how fast we don’t know but as long as we’re capable and in a position to make some good choices, why not?  Oliver Sacks knew he was dying of Cancer so he spent the last year of his life writing his final book, “Gratitude.”  Isn’t that how we would like to come to our end, grateful for all that we have had and for those in our lives whom we have loved and who have loved us?

Whatever you make of this or take from it, I hope that you might come to understand and appreciate death as this other bookend of life and that while we live in between the two we have this amazing opportunity to celebrate every day by sharing kindness and love and spread a little joy and light along the way.