Cancer, Covid and Guns – The Worst Winter of My Life

In February, my husband Jamie died of bladder cancer. Covid made everything harder. But guns?

Yes, guns. During Jamie’s treatment, armed security guards wearing bullet proof vests supervised my comings and goings from the hospital. Generally, one hospital employee used a computer to screen and identify visitors. The process had glitches, so sometimes a line backed up. Usually, I was admitted within five or ten minutes. Generally, there were a few additional people working at the desk, often wearing name badges suggesting they were there to help, but, without computer access, they could only handle very general questions. Three or more armed guards watched. I don’t remember use of a metal detector. My bags weren’t searched. 

When I expressed surprise about the “armed camp” feel of the hospital entrances, I was told “something” had happened, and security had been increased. A brief Google search turned up the headline “Hospital Worker Armed With AR-15 Rifle Kills Co-Worker, Shoots 2 Cops”. The date was three months prior.

I wondered about the security guards. They weren’t police officers, whom I saw in the hospital only occasionally. They must have been hospital employees, or staff from professional security companies. I wondered about their training and experience. Some looked very young, but almost everyone looks young to me.

Security was much more stringent at the Emergency Department, which I haunted for three long days while my husband was waiting for a hospital bed. I was not permitted to see him. The closest I could get was the Emergency Department lobby, accessed through a checkpoint with “airport” type security, including metal detectors and x-ray equipment. And three or four or five watchful, heavily armed guards. I couldn’t fault their watchfulness. The atmosphere was grim. People were sick, some in pain, and some looked desperate.

So.. guns. Lots of guns. Entering the hospital, I resolutely ignored the obvious possibility that something could trigger violence, that I could get caught in crossfire without a moments warning. I’m good at ignoring what I can’t fix.

For a month, my husband was in and out of the hospital. I visited daily. Then the gun issue got personal. On the cancer floor, a family member may stay overnight with a patient, and I asked for that privilege, filling out some paperwork. I thought it was approved. I wore a sweatsuit and brought my toothbrush. My husband’s cancer had been declared untreatable, and I wanted all the time with him I could arrange.

At 9:30 pm, I was told to leave. I protested that I had no car and no place to go. I said I had permission to stay, but was told the paperwork hadn’t been signed, and could not be signed at night. Did they plan to put me out in the February cold? I got stubborn, and politely told them I wasn’t leaving unless security escorted me out. I didn’t mention the guns, but that was the point. I’ll leave at gunpoint. (Pardon the drama.) I organized my backpack, coat, hat, gloves and tried to explain to my husband that I wanted to stay but maybe I couldn’t. He was so sick I don’t know if he understood at all.

I heard voices in the corridor. Security? Some discussion. A single person entered the room and identified himself as a doctor. He told me I had to leave. We talked. Without comment, he changed his mind. He asked about my husband, his prognosis, his treatment. He offered advice, both practical and personal. He helped me arrange the chair for sleep, and he wished me well. (I hope he lives forever.)

And now, many weeks later, as gun violence breaks American hearts once again, I think about how differently that winter night could have ended. Of course, I most likely would have left quietly and walked safely enough to a familiar, overpriced hotel. I might have been able to call a friend. The odds were that I would manage to stay safe.

But I know very well that you don’t always get the “reasonable” odds. Sometimes you get the “worst case”.

So…what if? 

What if a guard had entered the room, instead a doctor? What if (in my fatigue and distress) I had argued? What if I panicked? Shouted? What if the guard was having a bad night or hated bossy old women or hadn’t been well trained in escorting uncooperative old people to the exit? If someone had laid hands on me, might I have fought? 

What if I hadn’t been white and old and looked grandmotherly and spoken good English? 

There were so many ways the situation could have ended badly. 

Think about it… a hospital is a place where everyone is under severe stress. Everyone. Adding more guns to make the place safer is both logical and illogical. Let’s just say it is not optimal. The healthcare system has terrible problems (understatement), most of which aren’t improved by lethal weaponry.

When I tell people about this incident, I can make it sound funny. I can joke about playing the “helpless old lady” card. But it was dangerous. I’m now even more afraid of guns. I’m afraid in places that need to be kept safe with guns. I’m afraid of people who think they can only be safe carrying a gun.

And now, I’m afraid of supermarkets. Citizens of Buffalo, survivors of the Tops murders, I am so sorry for what you have suffered.  

Originally written May 19, 2022

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Medical Aid in Dying – Sad Victory

Another trip to Trenton. (See my posts of  February 12 and 21 of 2019.) On March 25, both the New Jersey Senate and Assembly voted on a bill to allow a doctor to prescribe lethal medication for self administration by a mentally competent adult having (in the opinion of two doctors) less than six months to live. Polls show that 60% of New Jersey residents want this change in our law.

How did I spend my day? I was one of perhaps 25 supporters working under the banner of a national organization called Compassion and Choices. We made our presence obvious by wearing the organization’s distinctive yellow t-shirts. Some of us carried signs.

Opponents to the legislation wore recognizable lapel badges. Who are they? (I can’t answer this in detail.) I think they are people who believe that medical science can control pain. Some are doctors. Some seem to be religiously/morally motivated – Catholics and (orthodox?) Jews. Most poignant, some are citizens with handicaps who fear that Aid in Dying will lead to involuntary euthanasia of people judged to be “defective”. It seems to me that this “slippery slope” argument requires very careful analysis, and the concerns of the handicapped must be scrupulously protected. In this territory, the public policy making is far from complete.

Initially we lurked in the crowded basement of the New Jersey State House Annex, wanting our support to be visible to the legislators. The noise and crowding were extreme. Sometimes the two sides of the Aid in Dying issue came face to face. I was walking up a ramp, supporting a lady much older and more frail than I am, both of us moving carefully. We came face to face with an opponent to our position, a huge man dressed in black whose argument consisted of “how can you possibly?…” and “every soul is sacred”. I slowed him slightly with “what about my right to make the decision to end my own pain?” or something like that. Then I handed him my one page statement (see previous post) and asked that he read it. The crowd pushed us apart.

Much was under consideration in Trenton on March 25…

• medical marijuana
• recreational marijuana
• teachers’ benefits and salaries
• high school football
• driving rights?
• dozens of obscure-to-me bills

We waited – in the corridor, the cafeteria, the two legislative chambers…

Compassion and Choices warned us that, in the legislative chambers, we would hear distressing statements, exaggerations, untruths… We were asked to stay calm and refrain from calling out (which violates the rules), although opponents might do so. Yes, all of that happened. It was hard. Procedural issues came up – we thought the Bill was tabled, which would have been bad, but suddenly it was back. Only one assembly person spoke with what I would call the “voice of reason”. I think almost all legislators were committed beforehand. And a few were waging a passionate battle in opposition.

After the vote, most of “the opposition” drifted away from us, but a young man took out his cell phone and announced that he wanted “pictures of the Nazis”. That’s what he called us. We tried to ignore him and shelter the woman he approached most closely, a fragile cancer patient. Somehow we all got out of there.

Looking at the smiles and high fives exchanged after the legislation passed first the Assembly and then the Senate, and at the pictures posted on social media, an observer think the pro-Aid in Dying group was happy about its victory. But underneath this was very profound sadness. Most of the supporters of Aid in Dying (based on my experience) are women who are or have been caregivers. In formal testimony, there were repeated references to “my husband”, “my mother”, “my sister”, “my best friend”. Most (but not all) of these loved ones suffered from cancer and experienced terrible pain. A few people were advocating on their own behalf, in anticipation of uncontrollable pain. Four (possibly more) members of our group are plainly seriously ill – three using oxygen, one in a wheel chair. They were among the more emotional of the participants. I talked with a composed and apparently healthy woman suffering from a rare genetic liver disorder. There is no treatment available. She is fortunate to even have a diagnosis. Her quality of life may deteriorate at any time. If that happens, she wants to choose the time of her own death.

I was relieved when the Governor signed the Bill into law. A few months will be required to set up regulations for implementation. How soon will this be an issue which is about ME? Or some dear friend? God grant me wisdom…

Why I Support Medical Aid in Dying

I went to Trenton on February 7, 2019, to support legislation that would, under certain conditions, permit a doctor to prescribe lethal medication for self administration by a mentally competent adult. Knowing testimony would be limited to two minutes, I wrote the following:

I am testifying in support of this legislation because of my experience at the bedsides of two dear friends, Carol Slocum who died of pancreatic cancer in 2010 and Mary Hunt who died of lung cancer in 2014. I regret to say that each of them suffered from severe pain.

What I saw led me to conclude that pain control is not an exact science and that the promise offered by hospice of a calm and painless death is an illusion. Medications and supportive services help some people, some of the time. High dose morphine controls pain at the expense of meaningful awareness. Drugged oblivion would not be my choice.

Mary Hunt wanted medical aid in dying and repeatedly expressed to me her anger and frustration that the laws of the State of New Jersey prevented her from having meaningful control over her impending, inevitable death.

I am currently blessed with good health, but I know how quickly that can be swept away. If I am ever as sick as my two friends were, I want the right to end my suffering. I would want to have a legally prescribed, lethal drug in my possession. I consider Aid in Dying for the Terminally Ill to be a compassionate and humane policy.

Alone in my car on the way to Trenton, the memory of other deaths intruded into my consciousness. FOUR MORE cancer deaths in the past decade, among my closest friends. Cancer of the lung, breast, uterus, ovaries. (Dozens, of course, if I draw a wider circle.)

It’s a wonder I even got to Trenton. I wanted to pull off the road and cry.

Among these six personally devastating deaths, what did I see? ONE case that I would characterize as a “good death”, the kind hospice hopes to provide – safety, comfort and loving company. Another was about 50% “good”. The others? All kinds of problems.

• Isolation.
• Hasty, inappropriate medical interventions.
• Lack of support for both patient and family.
• Pain.
• Uncertainty.

MY SIX FRIENDS WERE MIDDLE/UPPER CLASS PEOPLE WITH GOOD HEALTH INSURANCE. Their families were reasonably sophisticated about hospitals and medical specialists.

I simply can’t imagine what it’s like for people with no insurance. Or no money. Or few friends. Or poor English.

I’m concerned about the emphasis on PAIN as a criterion for aid in dying. How much do I have to suffer for YOU (who oppose this legislation, and/or the State of New Jersey) to be comfortable with my decision to die?

What about my right to make the important decisions about my life? At what point should it be taken from me? Medically, our ability to keep people alive far outstrips our ability (and willingness) to support QUALITY of life.

“Kiss Me Like a Stranger” by Gene Wilder

This hasn’t happened to me before: a famous person dies while his autobiography is in my “write a blog post” pile. Gene Wilder died yesterday.

The book is subtitled “My Search for Love and Art”. Wilder talks more about love than art, and occasionally provided more personal detail than I wanted to assimilate.

My favorite of Wilder’s movies (by far!) is The Producers. It’s “over the top” in so many wonderful ways. Wilder and Zero Mostel are an amazing comic duo.

I didn’t like Willie Wonka and the Chocolate Factory. Too weird for me.

Some of the best writing in the book is about Wilder’s marriage to Gilda Radner. Her death from ovarian cancer in 1989 was tragic. Wilder’s subsequent accomplishments in fighting ovarian cancer and establishing the Gilda’s Club charities were notable. There’s a chapter of Gilda’s Club near me, and I took advantage of it when my best friend was stricken with pancreatic cancer in 2010.

Ironically, Wilder was diagnosed with lymphoma in 1999. It was successfully treated, and his death was attributed to complications of Alzheimer’s Disease. As Gilda Radner’s alter ego Roseanne Rosannadanna said, it’s always something!

“On the Move: A Life” by Oliver Sacks

Oliver Sacks is 82 years old, and near death. He announced in February of this year that the ocular cancer for which he was treated nine years ago has metastasized to his liver. This hasn’t slowed him down! His Facebook page is active, with five posts in the past week, including a supportive message to Jimmie Carter, ten years older than Sacks and similarly stricken with metastatic cancer.

When you read Sacks, you encounter dozen of long names for complex neurological disorders, like achromatopsia and postencephalitic syndrome, but most of us would probably “diagnose” him as suffering from “attention deficit disorder”. He was beyond scatterbrained, and unfortunately lost or destroyed as much written work as he eventually published. He was unable to work in neurological research because he was absent minded and “too dangerous” in the laboratory. With the help of extremely dedicated assistants and editors, he published a dozen books and innumerable articles. I can’t figure out what “genre” he should be assigned to, aside from “non-fiction”. (One critic actually accused him of making up the case histories he recounts.)

Sacks approached each of his patients as the bearer of a unique story, and tried to read the whole life, not just to identify the disease that caused the person to seek medical care. His writings consist mostly of case histories. This has left him somewhat at odds with the academic medical establishment.

Sacks was a non-linear thinker. His mind ran off in so many directions that he would continually add footnotes to his drafts, until the footnotes exceeded the volume of the book.

Sacks was related to or acquainted with an astonishing number of public figures, especially scientists, like Francis Crick (of double helix fame) and Stephen Jay Gould, and poet W H Auden. In many cases, they exchanged manuscripts and ideas extensively.

The best part of this book is the next-to-last chapter, entitled “A New Vision of the Mind”. Sacks is wildly excited about the prospect that modern neurophysiology will, in the next few decades, generate a comprehensive scientific understanding of conscious. CONSCIOUSNESS! It’s like saying that science is ready to explain God. When Sacks began his studies in neurology, the brain was deeply mysterious and “mind” could not be “studied” at all. Suitable tools were not available. Now, fifty+ plus years later, the brain can be imaged in incredible detail. Sacks believes that the theory known as “neural Darwinism” will yield a revolutionary change in our understanding of what it means to be “aware”. Relevant authors and books are cited. This chapter is a great springboard for anyone who wants to understand contemporary neuroscience.

Oliver Sacks is an unusual intellectual and I wholeheartedly recommend his books, especially if you occasionally wonder if your mind is playing tricks on you.

“The Sea” a novel by John Banville, 2005

This book was recommended to me by a young adult relative. He was supposed to have read it for a college course in Irish Literature. But he didn’t… I think it would be more appreciated by older readers, but I can understand why it was part of a course. It’s so good!

The Sea is about death and memory. The author looks back on childhood as “the time of the gods”, a time of struggle to understand incomprehensible surroundings and mysterious people (adults). Several deaths frame the action. A pair of twins die when the author is vacationing with his family by the ocean. The story is narrated from the other end of life, just after the narrator’s wife has died (horribly) from cancer. 

The twins seem mythic – girl and boy, voluble and silent, normal (whatever that means) and abnormal (in contemporary terms, handicapped). The narrator seeks them out, fascinated by their upper class status and the vast differences between their family and his own. The twins’ deaths are incomprehensible, shocking, unexplained. Probably all death seems that way to a 13 year old. 

Enough detail is supplied to convince us that the wife’s death is brutal. The narrator, suffering, revisits the scenes of his childhood relationship with the twins and their family, without knowing why he does so. He drinks to excess, almost to death, and is pulled back into life by his companions – daughter, stranger and old, old acquaintance. 

Work makes this novel “work”? The writing is beautiful, and I don’t usually say this about authors whose vocabulary exceeds mine. The descriptions of people and settings are detailed and sensual. And the author “closes the loop”, linking beginning and end. Careful writing. I will look for other books by John Banville.