Risa Denenberg

>Pager bleats its rising and lowering notes (de-da-do-da-de). Familiar as my name, but as I am wading from sleep to wake, I seem to think that a fire truck, siren blaring, is racing down my street. Fire? Should I wake up? I snap back to me, awake, trying to make out the number back-lit on the tiny screen in the dark bedroom. It’s the nursing home, telling me he has died. It’s 2:15 am.

I ask for the story, how were his last hours, minutes? Was he in pain? Was anyone with him? When someone dies overnight, the staff never seem to get what I’m asking. I always end up making someone feel defensive. Or maybe that’s just projection. I certainly feel sad, bad, horrible that I wasn’t there. I know. I know. I did what I could. In this case, it just didn’t feel like enough. Or I just got too attached this time. This time. This one. Yes.

I call his daughter. “No, no! I really wanted to be there. I was so exhausted, I came home to sleep for a few hours. I feel horrible that I left.” So we both feel horrible, console one another. She certainly rose to the occasion, did everything she could to help him, while no one else in the family even visited.

The hardness was that he didn’t want to die, wasn’t ready, much too young, much too much undone, had just started over, this thing caught him in the neck and strangled him without so much as a warning punch. And the pain. Was terrible. Even on the highest doses of opioids I have ever prescribed. Pain mixed with fear, anger, angst. I think I loved him for these few weeks, a helpless sort of love because I couldn’t make it better. I thought.

Daughter said to me: “He liked you. Really liked you. That’s a big complement, you know. He sees right through shit, and you were real to him.”

Thank you. Thank you for reminding me that it’s ok to get attached. To feel a death so strongly that it takes your breath away. Secretly hoping it will happen soon, never happen.

So much, so hard to describe. So hard. Over now.

I never got back to sleep.

>All of us. Each of us.
With our distinct faces,
Our unique thumbprints,
Our own affliction.

For a long time
I have collected pain
And now I don’t know
What to make of it.

Isn’t this enough? To
Enter this world through
Our own mother’s body?
But we are lost.

Grief waits in the alley
For the ambush.

>I’ve been visiting her for several months, mostly working on her chronic pain. Sometimes, before a visit, I think about how hard it is to sit with her. She is really depressed. And really in pain. Some of it is existential, but most of it is physical pain from underlying physical pathology. Our work together has gone like this–little gains, then big setbacks. Trodding along trying to help. Showing up, but wondering if it mattered, since her pain is as bad as it was when I met her. Now she has been skipping dialysis, ending up in the emergency room with potassium levels high enough to stop her heart. Her nephrologist doesn’t understand why she keeps skipping appointments. He is worried about her. A whole slew of people are concerned. As they should be.

So I asked her, what happens? And she told me. I just can’t stand the sessions. It starts out ok, but then I get sick. And wiped out. And the worst thing is the pain in my legs is about 100 times worse after dialysis. Every time.

I told her that pain during dialysis was not so uncommon. There are many reasons for this, in her case I thought maybe the opioid she was taking was “washed out” by dialysis, and sort of threw her into a pain crisis after dialysis.

And this is what she told me:

After so long, I almost can’t believe that there is a reason for it. But just this week, one of the nurses at dialysis told me that other patients miss dialysis appointments for all kinds of reasons, but often it’s because of pain. I’m not the only one. I can’t believe no one told me this before. It’s important to feel that you’re not alone with these problems. I feel a little bit like some freak, somehow, a noncompliant, aberrant misfit. Even if I were 100%, going to dialysis isn’t easy. I’ve been doing this for 9 years. Being in constant pain makes it so much harder to go to dialysis. It helps to know that there are others having similar problems. It helps that someone wants to help with the pain. It helps keep me from falling into that shell where I just feel so alone with this. It helps allay some of the anxiety and depression that goes along with the pain and lowers my resistance to the pain.

What could I say after that? But I managed to say this much: I don’t know if I can help to lessen the pain. I don’t have that many more tricks up my sleeve that are safe for you to try. But I haven’t given up. I won’t give up. And I won’t abandon you.

Sometimes we lose sight of how much acknowleging pain and sitting with a person in pain is worth. And really, anyone can do these things. Me. Or you. For example.

> Part 1: Suicides

There is but one truly serious philosophical problem, and that is suicide. Judging whether life is or is not worth living amounts to answering the fundamental question of philosophy. ~Albert Camus

Each victim of suicide gives his act a personal stamp which expresses his temperament, the special conditions in which he is involved, and which, consequently, cannot be explained by the social and general causes of the phenomenon. ~Emile Durkheim

Write something, even if it is just a suicide note. ~Gore Vidal

Snow, Orhan Pamuk(2002, translated 2004)
The idea that suicide might spread contagiously like the plague had first been suggested after a girl traveled all the way from Batman to Kars just kill herself. … Ka thought it strangely depressing that the suicide girls had had to struggle to find a private moment to kill themselves.

Returning to Earth, Jim Harrison (2007)
Here I am on the sofa at age forty-five and I have Lou Gehrig’s disease. …
We’re going to the place Donald wishes to die. When he dies we’ll bury him. That’s all. Of course it’s illegal but fuck everyone.

The Bell Jar, Sylvia Plath (1971)
Wrapping my black coat round me like my own sweet shadow, I unscrewed the bottle of pills and started taking them swiftly, between gulps of water, one by one by one.

Veronika Decides to Die, Paulo Coelho (1999)
In a world where everyone struggles to survive whatever the cost, how could one judge those people who decide to die? No one can judge. Each person knows the extent of their own suffering or the total absence of meaning in their lives. Veronika wanted to explain that, but instead she choked on the tube in her mouth.

After Ikkyu and Other Poems, Jim Harrison (1996)
If you had hung yourself in Argentina, you would have twisted counterclockwise.
We can’t ask if it was worth it, can we?

Prisoner’s Dilemma, Richard Powers (1988)
The photo makes it obvious. Dad wants to go down. … He simply wants the sharp, stabbing pain and will sooner die of it than mask it with analgesics. He demands to feel the genuine and valuable signal of something gone wrong that needs correcting. He wants death by loneliness to add to his vita. It is not too auspicious a biography, as biographies go. But with the right death, it could become the corrective biography for his time, an era when the unexperienced life has at last gotten the uncontested upper hand.

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One morning many years ago while lying in bed, I felt a lump in my breast. It had not been there before, and it did not feel normal to me. I decided that it was cancer. After all, my aunt had died of breast cancer when she was only 35, and my mother had gone through a lumpectomy and radiation for breast cancer only seven years before. It was my lot to have cancer myself with this history. For a brief moment, I felt uncanny relief. For how many years had I fretted over this? Uncertainty was a weight that never strayed far enough away. In that moment, knowledge was sufficient to lift the burden.

But just as quickly, questions formed. Certainly I would never permit chemotherapy, or would I? How could I find a decent breast surgeon in the god-forsaken town I lived in? Could I continue to work? If I had to quit working, how would I support myself? Would I die of this?

Within three weeks, I was forced to reassess. Witlessly callous, a doctor declared that it was “nothing” but sent me for a mammogram. But it wasn’t nothing, it was what it was, a fork in the road, an opportunity to ask myself difficult questions, to answer without the benefit of facts and prognoses. Although I didn’t respond with such equanimity at the time, I have learned to indulge in the “what ifs” of life more and more as I get older. It is this rich imaginative internal conversation that I find so revealing. I learn things that I didn’t know about myself. Before certainty, I know that as things progress—for better or worse—I will not have access to the naïve wonder of what all of this really means to me. I do not know what might be in store for me. For me, that is an awesome time for looking inward.

Fortunately, the mammogram also was “negative”. I decided that there was no cancer. Relief, like a flood, washed me clean of worry. But this was a brief spell of relief also. Could there be a mistake? Would next year be too late to treat what I thought I had found this year? If I was simply wrong, what did that mean? I had decided that I had breast cancer, if only for three weeks. Was that long enough to let my guard down, and allow a cancer to begin? Or would my vulnerability to the suggestion of cancer simply stay with me until, in my own incompetence and neurosis, some doctor would, in fact, misdiagnose cancer and subject me to unnecessary treatment?

The crux of the dilemma was with my inability to handle uncertainty. But I have come to appreciate that there is no certainty, or no “certain” truth. I decided that I had cancer, I later decided that I did not have cancer. I made a number of other decisions based on each of these potentially false decisions. Each question raised at least one additional question. But more ominous, each answer to a question seemed to generate a branching network of new questions.

Upcoming, Part 2: Another View of my Left Breast

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>She was 36, by far the youngest in the assisted living facility. She was everybody’s “pet” driving her motor chair in a zig-zag path down the corridor, stopping to personally greet each old woman or man along the way. I met with her and her husband. She laughed brashly, smiled charmingly, and showed a vital interest in, well, everything. After he left, she told me, He has a girlfriend. That’s ok, she said. I have a boyfriend here too. She was kidding. She had a wry sense of humor.

She had the bad luck of a rapidly progressive case of multiple sclerosis. She had moved into the assisted living facility about 12 months before, at a time when the decision to pay for the level of care she needed was more affordable than bringing full time care into the home. And so, this couple lived separately, consuming more than 50% of his salary for her care. I had been asked to visit her because, in addition to the MS, she had a cardiomyopathy–a weakness of her heart muscle–that had required placement of a pacemaker about 10 years prior. At her last pacemaker checkup, she was told that she would need to have it replaced in the next few months–the battery was nearing its end of life. And if I don’t replace it? she had asked.

By the time I met with her, her mind was set, this was not a “counseling” session, she told me firmly, she did not need to discuss the decision itself. Her mind was made up. Her husband too felt that her decision was solid, well considered, and one that we would have to respect. It was not what he wanted, but he accepted that what she wanted mattered most. She had spoken to her cardiologist. She had talked to her primary care doctor. They were reluctantly in agreement that she had the right to make this decision, although they had each tried, in their own way to talk her out of it. She told me that she had given this plenty of thought. She said that this was not depression speaking, it was very much what she thought was the best path for her. In fact, no one thought she was depressed. There was nothing really complex to discuss.

She did have questions. What will happen? How long will it take? Could we keep her comfortable? Could she die here, where she now called home? What did she need to do to make sure that no one could override her decision?

She made the visit easy for me in that sense. I got her a bracelet with DNR/DNI engraved on it. She signed a living will, which we had witnessed and notarized. She and I both signed a Physician’s Orders for Life Sustaining Treatment (POLST) form clearly indicating her wishes. No CPR. No intubation. No tubes. I reviewed her advance directive and “do not hospitalize” order with the director of the facility and discussed how we could arrange end-of-life care there. I made copies of all of the forms and sent them to all of her doctors, placed a set in her facility record. She held the originals. I agreed to visit periodically and to order hospice care as soon as there was any sign of the pacemaker failing. For now, she would continue to live her life as fully as possible, given her disability. She expressed intense relief when these tasks were completed. I have more important things to do, she said.

She made the visit easy for me. In that sense. And she broke my heart.