Risa Denenberg

“This network of times which approached one another, forked, broke off, or were unaware of one another for centuries, embraces all possibilities of time. . . . In the present one, which a favorable fate has granted me, you have arrived at my house; in another, while crossing the garden, you found me dead; in still another, I utter these same words, but I am a mistake, a ghost. . . .  Time forks perpetually toward innumerable futures.”

Jorge Luis Borges, “The Garden of Forking Paths” 1941

Yesterday, unwittingly attempting  to share what appeared to be empty space with another car, and pulling back into my lane in time to avoid the crash, I’m reminded of all of the near misses in my life. In these situations, I’m often tempted to experience the other reality, in this case, a crash, with powerful sensations of sight, sound and shudder. I remind myself that there isn’t simply one alternate reality, there are perhaps infinite other paths and it is seemingly possible, to me, that we follow them all, only appear to be stuck in a single narrative.

Then I was reminded of the Borges story, which invariably fills me with wonder. Did this outrageously brilliant man know, in the 1940s, that physicists would be describing alternative universes in the 21st century? Or are physicists simply following his lead?

<<Not meaning to disregard the words of Robert Frost here or the role of poetry in understanding philosophy and physics.>>

I am currently reading How to Survive in a Science Fictional Universe, by Charles Yu, a clever little novel that explores the physics of time in an allegory that describes time travel as a metaphor for grammatical tenses—past-imperfect, future, future-imperfect, etc. (somewhere I’ve even heard of a past-continuous). Yu says, a novel is a form of time travel. Yu says, each person exists within her own personal time machine. If you stop and think about it, you can’t help asking: what the hell is time, anyway?

I read somewhere that the first use of the term multiverse can be attributed to William James, in his philosophical writings in the early years of the 20th century. We can time travel backwards to meet Borges and James and Frost by reading their writings. Perhaps if we dare, we can even follow the fork that leads us back to them with ours.

For a while now, I’ve been going through stuff, trying to pare down.  As I noted in another blog,

There are two reasons for my concern with my own accumulation of things, although they do merge at a future point. First is the rational goal of simplifying my life. Owning fewer possessions, wanting less, living a smaller life, being happy with less, eschewing acquisitiveness, spending less, preparing for a less “thing-filled” aging. Preparing for a simpler life leads quite naturally to the impending task of preparing for my death.

So, of course, as I go through ‘stuff’ I’ve come across dozens of small notebooks, filled with musings, which are mostly headed for the trash heap, but which contain a few lines worth saving. It startles me, although it shouldn’t, not really, that I have had a consistent way of viewing life, death, and the rest of it, pretty much the same for many decades.  Here is a passage in which I wonder how a person with cancer goes through the machine that is the medical system.  It was about 2002, and I was going through the mass-market experience of having a breast biopsy at the time.

Another view of my left breast

Is there a small window where they talk to you or is the whole experience spent alone, wondering what’s next? Today I don’t believe I have cancer, I’m just needing a routine biopsy. But why would I  need a biopsy if everything were ‘routine’. It seems impossible that everyone in this place could be so casual about cancer. Yet there is a subtle undercurrent in which I hear the ambiguity of everything they are doing–they just don’t have a clue. Someone says, It could very well be something. So if ‘something’ is cancer  and ‘nothing’ is not cancer, that what else could this experience represent? Why does no one talk to me? Even the ones who make chit-chat aren’t actually talking with me.

It could be that they talk to you when you are being treated for cancer, in those infusion rooms, or in the oncologist’s office, when a diagnosis is in hand and hope exists within the system for your survival. Then they probably stop talking again when treatment begins to fail. They don’t have much to say then.

Don’t I talk to my patients when they are dying?  Of course I do. I never ever didn’t talk to my patients. But of course, these people who don’t talk aren’t attached to me in the way I allow myself to become attached to my patients.

On the other hand, I have spoken to exactly no one about this biopsy. I feel that there is nothing to say. If I have cancer, I would want to think I would talk about it openly with everyone and write about it as well. But the ambiguity in the system appears to be muzzling me as well as it muzzles them.  And if they won’t tell me anything, what is there to say?

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Harvey Pekar was just a guy who thought that everyone–even a schlub like him–has an interesting life, worthy of documenting, which he did brilliantly in his comic books, American Splendor, published between 1976 and 2008. He was, according to his self descriptions, an eccentric, grumpy, chronically underemployed guy who thought his everyday struggles with life in Cleveland, his car, shopping, his wife and family, cancer, and sundry everyday kind of stuff were amply worth chronicling.

He certainly experienced his share of suffering, but he was also remarkably resilient and creative. He had the exact modicum of self respect needed to survive. He possessed a strong desire to be who he was and a total absence of pretense.

He wrote about his life. Without expecting or not expecting anyone out there to care.

His life reminds me that every life is splendid.

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I have previously blogged about a hastened death that I witnessed.

I thought some might be interested to know what we have learned in Washington State during the first year with our new law. The Washington State Death with Dignity Act was passed by voter initiative on November 4, 2008 and became law on March 5, 2009. In the language of the Act,

“The law allows terminally ill adults seeking to end their lives in a humane and dignified manner to request lethal doses of medication from physicians.”

All of the data cited here can be viewed on Washington State Department of Health Web Site where statistics for the first year are reported.

The number of requests for medication is not known, although I personally know that many persons seeking to use the law never made it through the process which requires having two physicians agree, making three requests (2 oral and one written), and a waiting period. In some parts of the state, there are no participating physicians, meaning the law is meaningless to many who would like to use it.

The health department only receives and collects data for persons who complete the complex process and actually receive the medication for use in hastening their death. In the first year of reporting, 63 persons received lethal doses of medication (either secobarbital or pentobarbital) and 47 of these died during this time period. Of those who died, 36 died following ingesting the medication and 7 died without taking their medication. Status for 4 of the deaths is unknown at this time (whether or not they took the medication or died without it).

Of the 47 participants who received medication and died during the twelve months from March 5 2009- March 5 2010:

• their ages ranged from 48-95 years
• 79% had cancer; 9% had neurological conditions such as ALS (Lou Gehrig’s disease) and 12% had other chronic illnesses such as lung and heart disease.
• 98% were white, non-Hispanic
• 46% were married
• 100% cited loss of autonomy among the reasons for requesting medications; 91% cited loss of ability to enjoy life; 82% cited loss of dignity
• 94% of the deaths occurred at home
• 72% were enrolled in hospice at the time of death

The time to unconsciousness following taking the medication ranged from 1-20 minutes and the time from ingestion to death ranged from 9 minutes to 28 hours. Most died in less than 90 minutes. Three persons vomited after taking the medication and five awakened after ingestion, although all persons ingesting the medication died.

As an aside, I am aware that not all of the participants were given pre-medications to prevent nausea and vomiting, and some were unable to ingest all of the medication. Of the deaths that have been attended by volunteers of Compassion and Choices (accounting for about 80% of them) all took pre-medications and most died within 20 minutes.

>In response to a recent post, a reader left me this question: “I do wonder though, with as much as you know about death, what do YOU believe happens to the individual, after death, if anything?”

I’m pleased she asked. This gives me the opportunity to think carefully about how to share my personal thoughts about the post-death situation. Working in end-of-life care, I have often been asked similar questions. What do you believe?

I’ll start by saying that I think of beliefs in general as simply strongly held opinions, and that when pushed, I admit to having no strong beliefs whatsoever. How can we really know anything for certain about this life, much less life of any other sort? Added to the reality that contradictory beliefs abound about everything.

Consider medicine, for example. Think for a moment about medical beliefs that underlied medical care in the 18th or 19th century. Do we believe they hold true today? More to the point, some medical practices from last year are out of date today based on research that may be “disproven” tomorrow. That’s why in science, we call everything a theory. Until proven otherwise. Which itself is quite a conundrum if not an outright oxymoron. Or think about the range of religious beliefs, all of which are held so strongly that wars explode over these beliefs century after century.

Ok, so putting beliefs aside for a moment, what about the after-death question? I do in fact have a fairly nuanced view about it, but first let’s do a miniscule review of beliefs about the question. In list form, so as not to belabor the point: (And who am I to try to list religious beliefs about death- may G-d forgive my impertinence.)

•Christian- there is a Day of Judgment and the afterlife is spent in heaven, hell, purgatory, or some combination there of.

•Buddhist- reincarnation or transmigration of the soul–taking on a new body after bodily death.

•Hinduism- reincarnation with possible escape from the cycle of birth-death-rebirth at some point through karma.

•Muslim- belief in the Last Day, when the world will be destroyed and Allah will raise all the dead for their judgment.

•Jewish- I can’t do justice to Jewish beliefs about the afterlife (only because I am Jewish) but there is a Midrashic belief about reincarnation in the body in the Messianic age. Thus, orthodox Jews will have amputated limbs saved until death so they can be buried intact. Cremation is not allowed for this reason, also. However, most non- orthodox Jews believe that we live on in the future generations’ memories of us. Heaven and hell are sort of optional.

•Secular and ethical- belief in the importance of creating meaning in the present life rather than having answers to questions about the meaning of death and the afterlife.

Beliefs about death are fascinating, layered, complex, and a pervasive element of human thought and community. They are not going away, folks. So it’s good to have one’s own thoughts on the subject. It is good, I say, to think about death.

Ok, so what do I think happens after death of the body? I came to the following ideas after reading Carl Jung’s writing about the collective unconscious. Jung was far more nuanced in his understanding of our questions, particularly as we age, about the meaning of life and death, than his contemporary Sigmund Freud. (It always slays me that I have chosen a Christian over a Jew in my own path to understanding how to think about this quesion–as opposed to what to think about it– but please, this is quite an aside.)

Jung distinguished the collective unconscious from the the personal unconscious of Freudian theories, in viewing the presence of a collective repository of unconscious material (below or beneath awake consciousness) in all organisms with a nervous system- i.e., in humans, apes, cats, worms, etc. The collective unconsciousness guides a species in its behaviors and understandings. Jung was particularly interested in dream material, in as much as it added to or drew from this repository.

So I like to think that when I die, my body will decompose and add to the repository of matter. I am still under the impression that the theory stands: matter and energy are neither created nor destroyed, only changed in form. (I can’t decide about cremation for myself- but that’s another whole post).

And my unconsious material (encompassing the concept of my energy or my soul) will drop into the collective unconsious of humanity. In my fantasy, this repository exists as a location of sorts, a murky river-like tunnel (worm-hole?) throughout the universe. I don’t find it credible that the ego or self survives bodily death, it just makes no sense to me, so the lovely (or perhaps frightening) idea of seeing those who have died before us in the afterlife holds no purchase with me. (Although I often envy those who can hold tight to this belief, and derive comfort from it.)

My life assignment, then, is to live in such a manner that my unconsious material will add to the collective unconsious in a positive way rather than a negative way. To strive towards peace and gratefulness and humility and generosity and compassion in my daily life so as to tone my unconsious material in that direction. So that after I die, my material will add to, rather than substract from, a future for those who come after me.

I can’t say I have great hope for our future as humans. But that doesn’t relieve me of the responsibility, in this life or after my own death, from struggling in the direction of my own life values. While I claim no strong beliefs– I’m the religious right’s worst fantasy of a cultural relativist–I do have strong values.

>It’s surprising and lovely that some of you have asked me to keep posting on this blog and I very much wish to do so. I have been posting occasionally at Open Salon with a more quotidian focus, but I have wanted to maintain this blog for posts about end of life issues. And there’s the rub, although I hope I can push myself through the block.