It was about 30 years ago that my first wife and I lost two children to a rare genetic disease. They were not known or seen by anyone but us and some doctors or nurses, they never came home, never got a chance go grow up, only a handful oe people ever knew that they existed at all. They are not in any graves, and I’m really not certain that anyone but me marks their very brief lives and deaths in any way.

It was my first experience with so personal a loss. They perhaps set me on a life-long search for an understanding of mortality and grief, long before I am as close to both as I am now.

My two lost children were on my mind when I became a hospice volunteer, I wanted to understand grieving and death in a more thoughtful way. As with most things involving death, most people don’t want to know anything about babies conceived so long ago, and why should they? It used to make me mad to think that if I don’t mention them – and I don’t – there is really no trace or marker or ritual to acknowledge that they existed at all.

Rituals are important in grieving, I have seen that again and again. And I don’t have any for my children. But I was never a stranger to death after they died.

Accepting mortality, I have learned, does not guarantee that I will die at home in my bed with the people I love standing by to say goodbye, with time and opportunity and a clear head to make peace with my life, my God, my self, Maria, or the host of demons and spirits and angels who have followed me through life.

It is a conceit to believe that just because you are willing to think about death that you can conjure up the way you want to die. Hardly anyone gets to do that.  I have friends who have dropped dead on the street, been murdered by mentally ill people with guns, been hit by buses, stricken with cancer, died in traffic accidents, crashed in planes,  fallen off cliffs on hikes.

In his book The Tibetan Book of Living and Dying, the author Sogyal Rinpoche wrote about this Western hubris, he was surprised at peoples’ attitudes about dying. Many of the people he spoke with, he said, live either in denial of death or in terror of it…”Many people,” he wrote, “believe that simply mentioning death is to risk wishing it about ourselves.”

I saw this again and again in hospice work.

Often I was instructed by social workers to never mention hospice, family members were often enraged at the idea that their loves ones might die, or that anyone might accept that as an inevitability. So many times, people on the edge of life clasped my hands when we were alone and told me how ready and eager they were to leave, they were tired or in pain. Don’t tell my son, they would beg, he doesn’t want me to be a quitter.

And as I left, the son or daughter – there was always one, in every family – who sought me out in the face of an overwhelming  and contrary reality to say their Mom or Dad was a fighter, they would be fine, they would never let go, they would heal.

It as so hard for these people to summon the will and strength to leave the world when the people they cared about insisted it would not – could not – be permitted to happen. Hospice nurses would often urge loved ones to tell their patients it is all right to let go. They needed to hear it.

Adversity is the shadow of us all, it is no stranger to any human being living a full life.  A long-time reader, now a friend, messaged me this morning that she is leaving her beloved home of 30 years. The great recession made it too costly to stay there any longer, her husband is ill, she is preparing to leave her beloved California sun and move to rainy Oregon.  It is cheaper there, and rainy. Adversity is making this a wise decision, she wrote, she is learning to let go and is beginning to get excited about a new adventure, “once the universe has wrested my hands away from the familiar comforts.”

They call it radical acceptance, and I hear open and enlightened patients in hospice speak of death the same way, the next chapter, a great adventure. “I might as well accept it,” one dying man told me, “I can’t stop it.”

If we can’t always control how we die or suffer adversity, we can improve the odds by being aware of it and thinking about it from time to time and speaking about with the people we love, so everyone can begin to face it, since everyone will have to deal with it.

In hospice work I learned that the best help is sometimes no help. It is listening. I could never change reality, wipe away the pain, eliminate the suffering. I could only say I was sorry and offer to help and acknowledge how much it can hurt. There is  really not much else we can do.

Whatever you do, wrote Rinpoche, don’t shut off the pain, accept it and remain vulnerable.

“Because it is in fact trying to hand you a priceless gift: the chance of discovering…what lies beyond sorrow.”

It does not take a shrink to know why we hide from death it makes us feel unbearably vulnerable sometimes. It is easy to do in America, the marketers who control our culture and media and the politicians who set the tone for our civic dialogue see death as a taboo and a heresy. Old people have vanished from our popular culture, they are warehoused in dispiriting homes and centers and hospitals where they die out of sight and away from everything they know and love, the dead are also ghosts banished from public sight or consciousness.

But I believe Rinpoche is wise.

When I think of my two lost children – I celebrate their birthdays and commemorate their deaths every year, and will for the rest of my life – I see the great gift they have given me, the opportunity to understand what lies beyond sorrow, and that is life.

There is no bigger gift than that.