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No Passport Needed…

This is what my cousin Jim says over the phone after announcing the obscene-sounding name of his terminal diagnosis—progressive bulbar palsy (PBP)—a form of ALS that damages motor neurons in the brain stem. The stem has motor neurons that help you chew, swallow, and speak. With PBP, you might slur your words and have trouble chewing and swallowing. It also makes it hard to control emotions. You may laugh or cry without meaning to.

 

I am in St Pete, Florida, in February 2018, where he and Anne, his wife, had just visited me the winter before.

 

“No passport needed for this country”, he says, his dry humor still accessible in the early stages of the illness. His voice over the phone sounds like someone has been tampering with his vocal chords and his testosterone. It is an octave higher than the masculine, reassuring voice I had become accustomed to over the last 15 years or so—the rational voice coming from an analytic, kind man, in the service of family and connection. The masculine steady voice of wisdom, protection, and guidance.

 

A voice my own father never had. And so I had come to look to Jim as a father figure, or at least, a healthy male role model. And to Anne as a warm, emotionally communicative, authentic, nurturing mother figure.

 

“And I don’t even have to pack my bags for this trip.” We both laugh as best we can. I am warding off crying. “I won’t need to study any maps for this one.” Jim kept them coming.

 

“You should really write these down for those who will follow in your footsteps,” I suggest.

 

It is a relief to be able to talk candidly about death. Jim, an 85 year old retired psychologist and his wife Anne, a former bereavement group facilitator, are not unfamiliar with this territory. They have both been involved in the Circle of Friends for the Dying and informal Death Cafe’s in their Westchester community. They hosted group meetings in their home on Lake Katonah where they lived for over 40 years.  With aging friends and neighbors, they support each other as they enter the realm of physical decline together in their 8th and 9th decades.

 

Things are no longer laughable when I visit them after returning to New York in April. Amidst a chaotic flurry of visitors and family from England, Jim joins in for meals, but, embarrassed to speak with his squeaky feminine voice, he retreats to his armchair in the living room to read the New York times or to his study work on his computer.

 

Cousin Jim is the patriarch, and last of the third generation of our Slovenian Lineage. His father, Joe, was my grandma Molly’s sister. Jim has spent much of his life researching our Slovenian past, recording the history of his own life with his wife and two sons, and traveling to almost every country in this world. His book shelves are lined with hand-produced bound books, documenting his life through photographs and writings. They are neatly organized by year. These are his legacy.

 

I visit Jim and Anne again, eight weeks after seeing them in May. With a tribe of friends and family helping, they had been moved from their three-story house to the one-story condo at Heritage Hill.

 

Jimmy’s head hangs in front at a 90 degree angle when he isn’t wearing his neck brace. The muscles have deteriorated due to the loss of neurological activity. PBP, this deviant relative of ALS, starts from the head and goes down. He succumbed to his surgeon’s suggestion to install a feeding tube to avoid choking to death. Now Anne, who has gathered people together at the table with three incredible meals a day for five decades, pours a formula down Jimmy’s tube.

 

While I am visiting, Jim lifts his shirt to show me the alien tube disappearing into his belly.

 

“Is it uncomfortable? How does it not get infected,” I inquire out of my perverse curiosity. He shows me the two separate appendages at the other end of the tube, one for feeding and the other for flushing. Anne translates or Jim resorts to writing with erasable markers on his white board to communicate his still-sharp and lucid thoughts.

 

We are at the table for dinner, Jimmy still trying to resume the pleasant communal ritual of normalcy, eating soft “safer” foods to supplement the uneventful delivery of his daily nutrition.

 

He begins to choke. Anne quickly follows him into the kitchen, where behind the still-swinging door, I hear the swooshing sound of the suction machine, which hangs on a stand with wheels. Its clear ringed, flexible, swan-like neck and beak pulls and pushes with bursts of air at the obstruction in Jimmy’s esophagus.

 

Now the suction robot is quiet, and Jim shuffles back into the dining room with Anne. He sits, trying to retain some semblance of dignity, and continues to eat his dish of fruit mash.

 

I ask, “Are you still reading No Self, No Problem?” It’s one of the Buddhist books I offered him back in May. He points towards it on the chair and in his wispy soprano. “No, I’m finished. You can take it.”

 

As I drive away Monday morning into the gray rainy world, I allow the lump of sorrow choked down in my own throat to surface.

 

The bleak feeling of Jim dying and not existing anymore, probably followed quickly by Anne, erupts into the sound of me sobbing. I let myself play the movie in my mind of the wonderful times I have been privileged to experience with them over the span of years. My tears wash over my imaginary movie screen.

 

The rhythm of windshield wipers soothes me and my crying subsides, leaving a soft empty sensation in my chest, as I cross over the Hudson on the Newburgh Bridge.

 

Alexandra Morgan

July 2018

Is this it, I wonder?

Erica on Being in Hospice Care

Erica Chase-Salerno was a journalist, a wife and mother of two, and an indefatigable spirit. Diagnosed with Stage IV breast cancer in 2015, she shared her experiences of undergoing treatment and all side effects with everyone. Her diminishing health did not stopped her from engaging in life “head on and heart strong,” as she said. Erica’s Cancer Journal, which was published regularly in the Almanac Weekly, recounts her trip down this arduous, difficult road.

Her sense of humor bordered on the goofy and ridiculous—who tells jokes while they’re dallying in a chemotherapy lounge?—giving us permission to lighten up about this tragic situation. She taught us how to be fully alive while in the process of dying. In January, Erica joined the ranks of people resorting to hospice services. Here’s what she wrote:

January 3, 2019

“Putting the Spice in Hospice”

What do you call a bunch of chess players bragging about their games in a hotel lobby?

Chess nuts boasting in an open foyer!

Hmmmm….chocolate flourless cake, a festive atmosphere, dumb jokes, what are we celebrating today? Hospice! Happy Hospice Day to Me!

Today is my first day on Hospice.

What does being on Hospice mean for me?

– My life expectancy is estimated to be up to six months

– I still have an insurance deductible

– Hospice’s entire job is to help keep me pain-free and comfortable during my remaining time

– Services are based at home, including music & pet therapy – sweet!

– From this point forward, I cannot pursue curative treatments, like chemotherapy or surgery or radiation unless they are considered comfort measures

– However, I can leave Hospice at any time

Most importantly, I keep living my life as usual! (hopefully without the freaking shingles in my right eye, still healing from that hell).

What does the pirate say on his 80th birthday?

“Aye Matey.”

The recent string of surgeries and procedures have verified what my body has been telling me for months: it’s time to walk a different path.

While this earthly vessel is physically compromised—ok ok, so is my humor—I still dwell in the can– part of cancer. I’m like Jenny-from-the-Block, except I’m more along the lines of Erica-from-the-Woods. I need you to dish out the same sass you already outwit me with, share the love you’ve showered me with since the beginning of this wild ride, and forgive me for ending with all of those prepositions.

Things are changing, I’m a little shaky, unsteady, Mom’s spaghetti. You know I’ll continue to keep you updated the best I can, considering the challenges letters and words are for me right now. I’m grateful for this window before my body further declines.

AND…

Thanks to my hospital nurses for this tip: Large pills can be swallowed whole, effortlessly, with applesauce! (This just in – yogurt recommended, too!)

I don’t know why – if it’s psychological, physics, or what, but I have taken a LOT of pills in life, and this works every time, including the gi-normous horse-sized pills I’m currently on.

January 17, 2019

Knock knock.

– Who’s there?

– Control freak. [beat] Now you say, Control freak who?

Well, for starters, I can tell you that in my very limited experience, even though there are tons of recommendations about starting hospice sooner rather than later within that remaining six-month life expectancy, apparently very few people actually do it. I get it; I wasn’t ready before I was ready, either.

After months of reflection, I saw the writing on the wall: brain tumor removal; heart drains; respiratory weakness; sepsis; and because all of that is so boring, we spiced things up by contracting shingles in my right eye. On a scale of one to ten measuring pain from shingles, eye shingles score at about four million, conservatively. I still look a fright, and I’m scabby from the painful sores. But Mother Nature seems to “get me” on how extremely satisfying it can be to have a fabulous nose-pick, because she, Herself, surpassed all of my dreams with this new of level of epidermal joy scabbing around my face: level four million – in a good way! If it’s wrong to pick my face, I don’t want to be right.

But it’s not all glory. Time doesn’t stand still because I’m off cancer treatments. I have a pool going for which organ takes me down: brain, heart, or liver. My oxygen tanks are already on deck for when I need more help breathing as my heart inevitably refills with fluid.

Hospice basically consists of a bunch of skilled people who come over one at a time. I don’t know how many currently able-bodied people are on hospice like me. The only people I have met since starting come right to my home. I have a nurse who comes weekly; a 24-hour hotline for urgent needs or questions; an awesome chaplain; and apparently, there are also music therapists and some pet therapy in the mix (I’ll report back on that).

My insurance enables me to be there, but I still have the same deductibles and co-pays I used to. (Somehow I always thought hospice was free? Not for me, anyway.)

To me, culturally, hospice seems viewed is a societal synonym of: “So long! Farewell! Auf wiedersehen! Good-bye!” (I dare you to spell “Auf wiedersehen” without Google.) There’s this tragic tinge that feels like I repel people (Note to self: get more mouthwash).

Yes, I’m dying, but, as I read this morning thanks to some great friends who shared this with me:

“What is it like to know that you are dying?”

“What’s it like pretending that you aren’t?”

Head On and Heart Strong!

Love, Erica

Published on February 7, 2019, the day Erica died…

The wobble in my voice is new. I sound shaky, frail. I have never heard this sound out of my mouth before. Does Beyoncé ever wake up like this? The next day, after increasingly desperate panting, I learn the term “air hunger.” Hospice arranges a delivery of oxygen. Me: “Um, I don’t know what size I need. Do you have a variety pack?”

I am suddenly coughing through my food, and especially drinks – like some of the flaps aren’t sealing properly. I rely on straws to prevent me from choking. My appetite nosedives, but my body makes the most of it: craves fresh produce or bone broth rather than pasta or spoonfuls of chocolate chip cookie dough.

Breathing becomes increasingly labored. We increase the air flow from 0 to 4. Such heavy equipment to process air. Personally, I appreciate that “canula” integrates seamlessly into our daily dialogue, as in, “CANU-la believe it?” or “Aren’t you my sweeeeeeeeeeet canula?” Random numbness. Urgent pee jags. Teeth that feel like they’re loosening into Shrek formation.

Is this it, I wonder?

Love, Erica

(To read more from Erica, visit https://hudsonvalleyone.com/tag/ericas-cancer-journey.)

Book Review: A Night on Buddy’s Bench

Book review…

A Night on Buddy’s Bench: An End of Life Story is Ira Baumgarten’s sweet tale of grief and dying. Can such a story be sweet? Yes! It’s an adult picture book, beautifully illustrated by Ann Bonville Trombly with mystical impressions of a hazy scene on an island in Maine. Fog covers the sounds of offshore boats. A solitary bench is positioned to look out on the water. A mystery unfolds.

Baumgarten was inspired to write this story after three deaths in his immediate family. In it, he attempts to address the inexplicable sorrow and confusion that occur when a loved one dies. He proposes, subtly, an alternate reality. Not one based in a foregone religious conclusion or a cultural assumption. Rather, his character hovers in a dream-like state as he faces his own imminent mortality.

The treatment of death and grief in Baumgarten’s piece borders on fantasy as the old man sees himself walking to Buddy’s bench in the middle of the night to toast a lost friend and to see the sun rise over the mists. He has a conversation with an unnamed visitor who has also come to the bench. He sees himself pouring whiskey into two shot glasses to share with his long-gone buddy. Magic happens.

On an end page, Baumgarten has printed three anonymous lines titled Stages of Grief. But these are not your standard psych-lingo stages outlined in so many books addressing dying and death. Rather…

Weeping, for we all must weep for what we have lost.

Silence, for in silence we understand solace, beauty, and comfort from something greater than ourselves.

Singing, for in singing we pour out our hearts and regain our voices.

A Night on Buddy’s Bench underscores the universal unanswerable: What does it mean that we die? The story is designed to initiate end-of-life conversations that might comfort both the living and the dying. It’s a beautiful book accompanied by an audio CD, perfect for sharing with family members and friends, folks who are in hospice, or anyone dealing with loss.

All profits from the sale of the book are donated to the National Hospice Foundation. Check it out on Amazon or at http://www.anightonbuddysbench.com/.

– Ann Hutton

Writing your story…

Recently, I presented a mini-talk about writing memoir at a Death Café. The event was held at an assisted living complex, so I knew that most of the attendees would be seniors—people with a lot of life behind them and, therefore, a lot of stories to tell. My presentation was meant to inspire folks to put pen to paper and tell something about themselves, something that might, in turn, inspire their loved ones when they are gone.

Some people think their own lives are not important enough or fascinating enough to be written about. In her book The Memoir Project, Marion Roach Smith quoted the novelist Flannery O’Connor as having said, “Anyone who survives childhood has enough material to write for the rest of her life.” Everyone has a story in them, and we all love a good story.

In our modern culture, we don’t sit around a fire and repeat the tales of our ancestors. Many of us are no longer members of a nuclear family or tight community, and the effect of not belonging to such a group is that we are isolated as individuals. We don’t feel related. We don’t get to know each other as well as our forebears did, and—social media aside—we are not known in that familiar sense.

Writing memoir is a way to be known by other members of the human family. Writing your story on paper or in a computer file creates a legacy that can live on after you. An “ethical will” is a format that leaves something greater than mere possessions and wealth to your descendents. It is a statement of your values and beliefs, an attempt to summarize your experiences and share what your life has been about.

Roach Smith also says, “Writing memoir is about telling the truth.” Naturally, our memories are not perfect, and our perceptions are always skewed by circumstances and opinions and dearly held beliefs. Still, your responsibility is to write your life the way you remember it. Write about the feelings you had and the sensations you felt and the decisions you made at the time things happened to you. Let it all come out. The emphasis here is on the telling—the sharing of who you are, recounting your very personal, unique, never-to-be-reproduced-by-anyone-else story.

The very process of writing causes memories to bubble up through your consciousness. Writing can give you new insights and clarity about how and why things happened the way they did, and what it all means. Writing helps you to connect the dots. When you write your truth, you not only learn from the process, but you also contribute your valued perspective to others—which is what relatedness is all about.

I have the privilege of leading a memoir writing group at our local oncology support house. We meet every Friday afternoon to delve into our memories and put them into words. Joining such a group can give you a structure to work with, in case you need a little prodding and inspiration. Sharing your work with others and listening to their recollections actually does bolster courage. You might find a writing group at your local library or book store.

This is how you begin: Buy a cheap spiral notebook—nothing too precious—and a pen that feels good in your hand. Or open a blank page on your laptop. Turn on some pleasant background music, if you like. Think about one day, one person from your past, one incident. Now tell us a story.

-Ann Hutton