I call them the Tuesday flowers. In my house, I do the shopping and most of the cooking. My gifted wife is not especially domestic, and i didn’t think I was either. But I love shopping and cooking, I love taking care of her, as she loves taking care of me.
On Tuesdays, I go to the food market, they have beautiful small pots of flowers, I never know what they are and don’t really care, but these struck me as especially graceful. Until the real flowers come up, which will be soon, these grace our windowsills, Maria places them strategically in the light and makes sure they are happy, as she puts it.
I got pretty sick on Sunday, seems to have been carbon monoxide poisoning, had a long and strange and sleepless night – I’ve had asthma and other stuff that makes this more acute. I began to emerge from the fog this morning, eager to write about the gift of being sick. I wanted to write about it, it made me think of mortality.
Of course, lying there helpless and uncomfortable, needing to be fed, I thought about mortality, and the long and prolonged way in which Americans are expected to die so that the death industry – pharmaceutical companies, the health care industry, nursing and rehabilitation homes – can profit from us, even as we are increasingly resented for being so helpless, costly and useless.
We live in a society that just doesn’t want to face death, so it’s up to us to do it. It is not a grim subject for me, but another chance to live well.
You think about death when you are sick and hurting, and Maria and I have begun to talk about death, not in a morbid way, not often, but openly and honestly. It feels very good, it’s a relief, it takes some of the power and mystery away from death. It is a less frightening thing.
I told her this morning that being a virtual invalid for 24 hours made me conscious of what it might be like for her in 10 or 15 years, or if I became chronically I’ll as I aged, which is somewhat inevitable for most people. I didn’t care to live a life like that, nor was it my wish for her to be my caretaker. I know many people who devote much of their lives to caring for sick parents or relatives, they see it as fate and destiny. “God bless you,” people often say to caretakers, and I bless them too. But I don’t wish to be one of them.
With the greatest respect for them, I do not believe that is the way death should be. Care-taking is a choice, and everyone has the right to make it for themselves.
My choice is to spare anyone that fate if I can. The last thing I want is for my daughter or my wife to spend years of her life caring for me. It is my job to figure out a better way. People tell me – I understand this – that caretaking can be the greatest of gifts to the caretaker as well as the person in need. I understand this. But I have some say in this also, and i would not wish that on the people i love.
Is death an injustice, or is it a part of life? I think it’s a part of life.
Most of the people I know deny death, they won’t accept it, talk about it, or acknowledge it’s inevitability.
I have a relative like that, she is near 90 and she will not speak of death in any way. Her family encourages this, she is not, they love to say, a quitter. They want her to live forever, and she feels considerable pressure to try and do that. They are not doing her any favors talking this way, I know, she has no idea how she wants to die, and no say in the process, thus she will die at the mercy of others.
More and more I see death as the ultimate creative challenge. In my hospice work, I saw that the people who talked about death in advance of it and thought about it, often died well. The people who never talked about it, accepted it or thought about it often took many years to die, almost always in pain and suffering and confusion.
Thanks to the so-called wonders of medicine, few of us die quickly any longer, we ebb and flow, sometimes for decades, declining all the time. As amazing as technology can be, it cannot spare us dying. Every one will pass this way.
I remember Sadie, a 97 year old former school teacher, who was living in a nursing home, she was rushed to the hospital once or twice a week, she had heart disease, high blood pressure, severe arthritis and a host of other ailments. The nursing home was terrified of getting sued, so anytime there was any fluctuation in Sadie’s health – this is constant at her age – they had to traumatize her by rushing her to a hospital to cover themselves.
Izzy and I visited her as part of hospice, and I remember Sadie telling me there was no longer an hour in the week when she felt good. She had no idea why she was live, she said, or what she was living for. Going back and forth to hospitals upset her, often hurt her, inflamed her arthritis, confused her. And she understood that the doctors couldn’t really do anything for her but manage to keep her alive longer.
She had no life, really, she just went from pill to pill and procedure to procedure. It was a system, and she was caught in it.
At the insistence of the nursing home, Sadie got a pacemaker, and every time her heart failed, she was brought back to life. Eventually, she tired of this way of living – or dying – and asked to have the pacemaker taken out. The nursing home refused. She asked to go home, but Medicare wouldn’t permit it unless her family hired round-the-clock nursing care, which they didn’t pay for and the family couldn’t afford. Sadie was trapped – she called it a “living hell.”
She lingered in this painful and artificial nether world for years, when her body finally gave out, she said goodbye to me, and she told me she wished she could have died comfortably and peacefully years earlier, and in her home, the way she wanted do.
But there was nobody to discuss it with, she said, she just never thought about it until it was too late and her children refused to even think about her dying. Her doctors wouldn’t talk about death, her family refused to admit that she might be dying, or that she would ever die. She was, they kept saying, not a quitter. Lots of people die like Sadie. My mission is to try to make certain I am not one of them.
There is a time when all of us have to let go, and I hope my departure can be graceful and thoughtful. Maybe even creative. Maria would like to be buried in the ground, she says, returned to nature. I can perhaps make that happen.
Maria and I are very much in love. I hate to think of her dying, for the longest time, she couldn’t even discuss my dying. She is also brave, and that has changed. I am 17 years older than she is, and I have already had open heart surgery. The surgery went well, I am healthier than ever, I expect to be around for a long time. But still, the surgery was a powerful exercises in being mortal and feeling mortal.
So we talk about death. Love is often about letting go, I said, and I will let go when you are not living a worthwhile or meaningful life, if that is what you wish. When you rarely are comfortable or free of pain and struggle. I will do the same for you, she said. So our great dialogue has begun. It is not depressing, quite the opposite. I feel cared for, loved, supported. I’ve seen in hospice that dying is sad, but not only sad. It can be quite beautiful and uplifting, a glorious end to a life, it can be shrouded in love and meaning.
It can be beautiful.
In the sixteenth century, the philosopher Michael de Montaigne proposed taking death’s power away from it, and giving it back to the people who must face it.
“To begin depriving death of its greatest advantage over us,” he wrote, “let us adopt a way clean contrary to that common one, let us deprive death of its strangeness; let us frequent it, let us get used to it…Let us never be carried away by pleasure so strongly that we fail to recall occasionally how many are the ways in which that joy of ours is subject to death or how many are the fashions in which death threatens to snatch it away…We do not know where death awaits us: so let us wait for it everywhere. to practice death is to practice freedom.”
So that’s an idea that will stick with me. Practice freedom. Everything is a gift, and I am still weak, but recovering. Lots of photographs to take, things to write. I love every day of my life, and I will come to love facing death with grace and purpose, I will not be pulled along by a system without mercy or compassion. I do not know where death waits for me, so I will greet it and say hello and get to know it a bit.
