What a dying old woman taught me about love

Was this a cause and effect of true love?

[I] was a newly trained hospice volunteer, and E. was to be my first patient. I had to work up the nerve to cross the threshold.

After gently clearing my throat and shuffling my feet in an attempt to wake her, I bent low to look at her face. Suddenly, her eyes opened wide.

She was as startled as me and said, in a forced whisper, “Who are you?”

“I’ve come to visit for a while,” I replied.

“Why, are you being punished?” she deadpanned.

I laughed a little, mostly with relief. I introduced myself to the dying woman who was a few decades my senior and then nervously began a monologue, telling her all about me. She listened attentively for a while but soon closed her eyes. On a tray table was a wedding photo. I peered at the circa 1940s picture and was taken aback. “Wow!” I said out loud. In her youth, E. had been stunningly beautiful. Bright eyes, fresh face. I looked up and saw her once clear but now milky eyes examining my face, watching my reaction to the photo.

She was bedridden, her bones fragile. During our next visit, I asked the nurse if E. could go outside in a wheelchair. The nurse said it was up to E. We rolled out into the sunlight and fresh air, and that’s when everything began to move faster for us, literally and figuratively.

I maneuvered her down the cracked and bumpy sidewalk into a nearby neighborhood. She lifted her face to the sun and opened her mouth to its warmth. She stayed that way until I parked the chair under a shade tree. I sat down with the trunk as my backrest.

For the longest time, she simply stared at me. Until she slowly stretched out her arms and beckoned me to her. I jumped up, although she didn’t seem in distress. I leaned toward her and she gently cupped my face with her hands. I could feel the pressure of each finger on my face. Suddenly, with purpose, she pulled me close and kissed me. On the lips, with a dry pucker.

I was not made uncomfortable by the gesture. Quite the opposite. I sensed in her a genuine joy and appreciation. So she kissed me. Perhaps the most meaningful kiss of my life.

Those meetings under the tree became our routine, where we shared stories of our lives. We quickly bonded through unabashed, intimate conversations. I told her things about myself that I had never, nor would ever share with anyone else. We simply started talking to each other that way. Instant trust, instant karma. Instant honesty.

E. told me she wasn’t so much afraid of dying as she was of going to hell. She had married young, to a very ambitious man, and as the years progressed, his business flourished, but their marriage did not. He increasingly spent more and more time at the office, with colleagues and away from her. Estrangement set in.

She found a job as a secretary and over time fell prey to the attentions and intentions of her boss — afternoon “lunches” at a motel.

One day, on the ride back to the office, her boss spotted his wife in town, waiting to cross a street. With a violent shove, he sent E. into the passenger side footwell, hissing at her to stay down until he was sure he had avoided detection.

It was a humiliating and illuminating moment for E. She ended the affair. But the deed had been done. She was officially an adulterer. Worse, a mortal sinner. And now, as her life was about to end, she could not shake the guilt and dread that God was about to deliver her to the eternal fires of damnation.

She wept as I knelt beside her chair and held her.

I know something about the Catholic church, having been an altar boy. I reminded her about the convenience of confession. “From what I just saw, I’ll assume you are truly remorseful.” “Yes of course,” she said. “And you have formally confessed this, yes?” “Once a month for the past 66 years,” she said. “Well, then, I think God has gotten the message … you’re off the hook!” “Do you think so?” she asked earnestly. “I know so,” I told her.

As our visits continued, I also shared stories I was not proud of, of my regrets, sins, character flaws, abuse of drugs and alcohol, tales of ruined relationships and marriages and career paths gone awry. How I blamed others and circumstances as if the bad things that happened in my life were not of the choices I made. She was at times scandalized by what she heard, but never judgmental. The process was cathartic, cleansing, transformative.

I felt a lightness of being I had never experienced before.

Within a year, she began to rapidly decline. During the day, I’d find her in a deep sleep. The nurses said she’d lay awake most nights and was eating very little. I started setting my alarm for 1:30 a.m. to make the 40-minute drive to her facility in the San Fernando Valley. I’d sit on a folding chair and move in close, so our whispered conversations would not wake others.

She was comforted and calmed by my presence. She was grateful that I had re-arranged my visiting times. (I know because she told me so.) And she also told me that she loved me. Too weak now to even raise her hands to my face, I fulfilled the need for that contact by tenderly kissing her cheek and forehead often. I needed it too. Time was slipping away.

I soon realized her truth, raw honesty and tenderness had created in me a level of introspection and self-examination that had previously been inaccessible. Was this a cause and effect of true love? And I did grow to love her — for her courage, candor and kindness. She was well aware her days were numbered. But for all of her failing health issues, she never expressed bitterness. It was another lesson learned for me.

For the first time in almost two years after I started visiting with E., I was going to be away from her, to make good on a long-planned vacation in the Yucatán. I told her that I’d be gone only a week and during that time there would be a full moon. I suggested that since she was awake at night she should look up for the full moon, and I promised I would too, and maybe we’d do it at the same time. Corny, maybe, but she didn’t think so.

One night during the middle of my trip, I couldn’t sleep and walked outside to where a hammock was strung between two palm trees. I laid back and looked up at a crystal clear moon and said out loud, “See? I told you.”

Upon returning home, it took me a few days to get back into the groove of work and life. But before I could make my next visit, I got a call from the hospice volunteer coordinator. E. had died while I was away. Peacefully, in her sleep, at age 87.

I often think of E., of how a dying old woman helped me to access and express my true, honest feelings about life and love. Not only did I get to learn from my mistakes, but from hers, too. I was able to affect the quality of her life for a time, but not the direction. She did both for me.

In real ways, we set each other free.

Complete Article HERE!

When do you know you’re old enough to die?

Barbara Ehrenreich has some answers

Author and journalist Barbara Ehrenreich at her home in Alexandria, Virginia, on 2 March.

By

With her latest book, Natural Causes, Barbara Ehrenreich notes that there’s an age at which death no longer requires much explanation

 
[F]our years ago, Barbara Ehrenreich, 76, reached the realisation that she was old enough to die. Not that the author, journalist and political activist was sick; she just didn’t want to spoil the time she had left undergoing myriad preventive medical tests or restricting her diet in pursuit of a longer life.

While she would seek help for an urgent health issue, she wouldn’t look for problems.

Now Ehrenreich felt free to enjoy herself. “I tend to worry that a lot of my friends who are my age don’t get to that point,” she tells the Guardian. “They’re frantically scrambling for new things that might prolong their lives.”

It is not a suicidal decision, she stresses. Ehrenreich has what she calls “a very keen bullshit detector” and she has done her research.

The results of this are detailed in her latest book, Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer, published on 10 April.

Part polemic, part autobiographical, Ehrenreich – who holds a PhD in cellular immunology – casts a skeptical, sometimes witty, and scientifically rigorous eye over the beliefs we hold that we think will give us longevity.

She targets the medical examinations, screenings and tests we’re subjected to in older age as well as the multibillion-dollar “wellness” industry, the cult of mindfulness and food fads.

These all give us the illusion that we are in control of our bodies. But in the latter part of the book, Ehrenreich argues this is not so. For example, she details how our immune systems can turn on us, promoting rather than preventing the spread of cancer cells.

When Ehrenreich talks of being old enough to die, she does not mean that each of us has an expiration date. It’s more that there’s an age at which death no longer requires much explanation.

“That thought had been forming in my mind for some time,” she says. “I really have no hard evidence about when exactly one gets old enough to die, but I notice in obituaries if the person is over 70 there’s not a big mystery, there’s no investigation called for. It’s usually not called tragic because we do die at some age. I found that rather refreshing.”

In 2000, Ehrenreich was diagnosed with breast cancer (she wrote the critical, award-winning essay Welcome to Cancerland about the pink ribbon culture).

The experience of cancer treatment helped shape her thoughts on ageing, she says.

“Within this last decade, I realised I was not going to go through chemotherapy again. That’s like a year out of your life when you consider the recovery time and everything. I don’t have a year to spare.”

In Natural Causes, Ehrenreich writes about how you receive more calls to screenings and tests in the US – including mammograms, colonoscopies and bone density scans – as you get older. She claims most “fail the evidence-based test” and are at best unnecessary and worst harmful.

Ehrenreich would rather relax with family and friends or take a long walk than sit in a doctor’s waiting room. She lives near her daughter in Alexandria, Virginia, and likes to pick up her 13-year-old granddaughter from school and “hang out with her a while”.

Work is still a passion too. She fizzes with ideas for articles and books on subjects that call for her non-conformist take.

Once a prominent figure in the Democratic Socialists of America, she is also busy with the Economic Hardship Reporting Project she founded, which promotes journalism about inequality and poverty in the US, and gives opportunity to journalists who are struggling financially. (The Guardian often partners with the organisation.)

Ehrenreich, who is divorced, has talked to her children – Rosa, a law professor, and Ben, a journalist and novelist – about her realisation she is old enough to die, but “not in a grim way”. That wouldn’t be her style. While a sombre subject, she chats about it with a matter-of-fact humour.

“I just said: ‘This is bullshit. I’m not going to go through this and that and the other. I’m not going to spend my time, which is very precious, being screened and probed and subjected to various kinds of machine surveillance.’ I think they’re with me. I raised them right,” she laughs.

“The last time I had to get a new primary care doctor I told her straight out: ‘I will come to you if I have a problem, but do not go looking for problems.’”

She pauses: “I think I beat her into submission.”

Natural Causes is Ehrenreich’s 23rd book in 50 years. Much of her work is myth-busting, such as Bright-sided, which looks at the false promises of positive thinking; other work highlights her keen sense of social justice. For her best-selling 2001 book Nickel and Dimed, she went undercover for three months, working in cleaning, waitressing and retail jobs to experience the difficulties of life on a minimum wage.

A recent exchange with a friend summed up what Ehrenreich hoped to achieve with Natural Causes.

“I gave the book to a dear friend of mine a week ago. She’s 86 and she’s a very distinguished social scientist and has had a tremendous career. “She said: ‘I love this, Barbara, it’s making me happy.’ I felt ‘wow’. I want people to read it and relax. I see so many people my age – and this has been going on for a while – who are obsessed, for example, with their diets.

“I’m sorry, I’m not going out of this life without butter on my bread. I’ve had so much grief from people about butter. The most important thing is that food tastes good enough to eat it. I like a glass of wine or a bloody mary, too.”

Barbara Ehrenreich: ‘Cancer is a cellular rebellion.’

Yet despite her thoughts on the “wellness” industry with its expensive health clubs (fitness has become a middle-class signifier, she says) and corporate “wellness” programs (flabby employees are less likely to be promoted, she writes), Ehrenreich won’t be giving up the gym anytime soon. She works out most days because she enjoys cardio and weight training and “lots of stretching”, not because it might make her live longer.

“That is the one way in which I participated in the health craze that set in this country in the 70s,” she says. “I just discovered there was something missing in my life. I don’t understand the people who say, ‘I’m so relieved my workout is over, it was torture, but I did it.’ I’m not like that.”

In Natural Causes, Ehrenreich uses the latest biomedical research to challenge our assumption that we have agency over our bodies and minds. Microscopic cells called macrophages make their own “decisions”, and not always to our benefit – they can aid the growth of tumours and attack other cells, with life-threatening results.

“This was totally shocking to me,” she says. “My research in graduate school was on macrophages and they were heroes [responsible for removing cell corpses and trash – the “garbage collector” of the body]. About 10 years ago I read in Scientific American about the discovery that they enable tumour cells to metastasise. I felt like it was treason!”

She continues: “The really shocking thing is that they can do what they want to do. I kept coming across the phrase in the scientific literature ‘cellular decision-making’.”

This changed her whole sense of her body, she says.

“The old notion of the body was like communist dictatorship – every cell in it was obediently performing its function and in turn was getting nourished by the bloodstream and everything. But no, there are rebels – I mean, cancer is a cellular rebellion.”

Ehrenreich, an atheist, finds comfort in the idea that humans do not live alone in a lifeless universe where the natural world is devoid of agency (which she describes as the ability to initiate an action).

“When you think about some of these issues, like how a cell can make decisions, and a lot of other things I talk about in the book, like an electron deciding whether to go through this place in a grid or that place. When you see there’s agency even in the natural world. When you think about it all being sort of alive like that, it’s very different from dying if you think there’s nothing but your mind in the universe, or your mind and God’s mind.”

Death becomes less a terrifying leap into the abyss and more like an embrace of ongoing life, she believes.

“If you think of the whole thing as potentially thriving and jumping around and having agency at some level, it’s fine to die,” she adds reassuringly.

Complete Article HERE!

There is more than one way to die with dignity

By I

“Who are you here to see?”

On this day, I was at Mount Sinai Hospital, in the oncology ward. The receptionist I usually check in with wasn’t at her desk. I was being greeted by a volunteer. Dark hair, wide eyes and a smile like a child’s doll. High school co-op student, maybe?

I handed over my health card and told her my doctor’s name.

“I’m sorry, I don’t know who she is. What are you here for?”

Her smile widens.

“Because I’m a patient?” I retort.

I know I’m being rude. But it’s an oncology ward. What does she think I’m here for? To discuss the weather? The shortage of wheelchair-accessible parking spaces in the lot?

What I really want to say is, my doctor is a palliative-care specialist. I’m seeing her because I have cancer. I’m preparing for my death.

I don’t look like I have cancer, let alone the incurable kind. I have all my hair. My friends and husband assure me my colour is good. Dressed in my normal clothes and not the pajamas I currently favour, I look reasonably well – for a middle-aged woman who also has spinal muscular atrophy, a congenital neuromuscular condition.

I rely on a motorized wheelchair to get around and need personal support workers to assist me in all aspects of daily living. It’s been this way forever, but now I have colon cancer, and two external abdominal bags to collect various bodily fluids.

This, to put it mildly, complicates things.

My palliative-care doctor is a compassionate young woman who wouldn’t look out of place in a medical drama. She has been guiding me through my own recent hospital drama: I was readmitted to hospital a couple of weeks earlier, for yet another emergency.

I’ve been fighting off a major abdominal abscess for more than a year now. At one point, my abscess was so large, one of my doctors admitted surprise that I was upright. This is what initially led to my cancer diagnosis. A colon biopsy confirmed the cancer was malignant. In October, I was told my cancer was inoperable, despite 28 rounds of radiation.

At least it’s not metastatic. Localized, but nowhere else. For now, anyway. Plus, my surgeon tells me, I likely have years with this cancer. Not months or weeks, like some of his other patients.

The challenge now is the infection associated with the abscess. During this current crisis, antibiotics are working. What my surgeon can’t tell me is when the next infection will hit, or when antibiotics may fail.

Some patients reinfect every month, he tells me. I’ve done well, he adds. I tell him I couldn’t handle being hospitalized every month. He acknowledges I would need to evaluate my quality of life, if this became my reality. In that moment, my decision to seek palliative care early seems the smartest decision I’ve made in a while.

Like most Canadians, I had limited understanding of palliative care before I had cancer. To me, “palliative care” was synonymous with “you are about to die.”

That’s not the case. On my first palliative visit, the doctor explains the word is Latin for “to cloak.” She personally likes that, seeing her role as guide and protector to patients who are coping with the most difficult time of their lives.

I need her guidance. There is no clear path around how to deal with cancer while living with a disability. I’m used to being disabled. It’s my normal. My quality of life up to now has been exceptional, complete with a husband I adore, a sweet, sassy daughter and a brand-new career.

Like everyone else diagnosed with cancer, my life has suddenly imploded. I find myself in this new world, navigating how to continue while knowing the end is coming much sooner than I’d like.

That’s why I’ve sought out palliative care. My own research leads me to studies showing that having a palliative-care expert can help me prolong my quality of life through the management of symptoms, such as pain that I know will likely worsen over time. My family doctor concurs, telling me outright that I need this.

This new relationship has enabled me to talk about my greatest fears. After my conversation with my surgeon, I fear dying slowly of sepsis, waiting for my organs to fail. I’ve agreed to a Do Not Resuscitate order, which ensures I won’t be hooked up to machines in the ICU, prolonging The End.

During this particular admission to hospital and based on what my surgeon has said, my choices seem stark. Down the road, I could die slowly from an infection that will shut down my organs, or sign up for a medically assisted death.

Then, my palliative-care doctor arrives at my bedside. She points out I have bounced back from severe, acute episodes before. She also knows I don’t want an assisted death and takes the time to explain there are options available, such as palliative sedation, a process where I can have large doses of morphine to keep me comfortable. She firmly tells me I am not close to needing this. My goal needs to be focused on getting better and getting home, to my daughter.

As she explains this, I start to relax. She’s given me the window I need to live my life, as compromised as it now is. It is not the life I would have chosen, but it still has meaning. My task now is to figure out what that meaning is. And her task is to help me to define my priorities while maximizing the quality of my life with medical therapies and emotional support.

It’s an interesting time to be thinking of my life as a person who is both disabled and has cancer. Less than two years ago, the federal government enacted a new law enabling Canadians with incurable conditions, whose death is foreseeable and are suffering irremediably, to ask a doctor to end their lives.

It’s been called “dying in dignity,” but for me, that’s not the way I want to go, at the hands of a doctor, wielding a poisoned syringe.

I believe no one with a terminal illness should be forced to endure suffering – but, if there is one lesson for me in the past year, death is not the only way to alleviate suffering. Managing physical suffering feels like traveling a winding road. Some days, it feels never-ending; other days, manageable, almost like the life I had before. Some days are so bad, I’m convinced death really is the only relief, but I’m brought back to reality when I think of what I could miss out on.

My life is definitely smaller now. I doubt I will ever work full-time again. I barely leave my apartment. Thanks to my father’s financial generosity, my husband has been able to take unpaid leave from his work to be with me. The time we spend together is precious. Even in its ordinariness, it is meaningful.

I appreciate the world differently now. It is as though time has slowed for me to see the small details of life, whether it be the softness of my bed sheets or watching snow drift down through my apartment window.

I’m trying to live with dignity, as I always have, despite the very real medical indignities I have been subjected to.

Which is why it dismays me greatly there are continuing attempts to make it easier for people without terminal conditions to ask a doctor to end their life. It dismays me that a lobby organization calling itself Dying With Dignity is not actively lobbying for increased access to palliative and hospice care, or advocating for more community supports for people with disabilities to live as productively as possible. In other words, to live with dignity.

We are all going to die, but before we do, each one of us has a right to a good quality of life, even to the very end. Yet too many Canadians do not have adequate access to palliative and hospice care. The lobbying efforts of those to equalize this are rarely discussed in our media.

I’ve chosen my path, thanks to the help of empathetic doctors and my own advocacy. My hope now is that more Canadians have the right to do the same, without the implied suggestion there is only one real way to die with dignity.

Complete Article HERE!

Learning how to think about death changed how I live

Viewing death as unrelated to life, or antithetical it, does a disservice to the days we have, because we don’t know how to value them, says John Leland. The journalist and author explains how an elderly friend changed his perspective on the importance of acknowledging our mortality.

Read the Full Transcript

Judy Woodruff:
New York Times reporter John Leland began following a group of men and women in 2015 who ranged in age from 87 to 92.
What he learned shattered his expectations about aging and death, as he explains in his Humble Opinion.

John Leland:

[P]eople are always telling us to live each day as if it’s our last, but we don’t really do it, and for two good reasons.

The first is that, if you really thought today was your last day, you wouldn’t pay the utility bill or save for retirement, and, before you know it, you’re in the dark warming a can of beans over an open flame.

And the second reason is that we don’t like to think about death or dying, except as something that happens to other people.

A few years ago, I met a man named John Sorensen, who taught me how to think about death, and it changed my outlook on life. He was 91, and he missed his partner of 60 years. And every time I visited him, he said he wanted to die. He wasn’t depressed or even sad.

In fact, talking about dying always got him in a good mood. Wanting to die, for John, was the best reason to live.

And what I mean is this. He loved opera and he loved old movie musicals. And wanting to die meant acknowledging that this might be the last time he heard Jonas Kaufmann sing Wagner or watched Gene Kelly singing in the rain. This made each time more worthy of his attention.

And the same went for visits with friends. It’s a textbook economics of scarcity. His days weren’t fleeting. They were saturated with pleasures of his own choosing.

In our culture, we have come to think of death as a kind of failure of medicine or an affront to the self, rather than seeing mortality as built into all of our days, the first as much as the last.

Viewing death this way, as unrelated to life or antithetical to it, does a disservice to the days we have, because we don’t know how to value them. We enjoy a movie more knowing it’s going to end in a couple hours.

That ski run in the Swiss Alps, it’s only fun because you know there’s a bottom. The end of the run gives meaning to each curve on the way down, even when you’re still near the top of the mountain.

I have heard this acceptance of the end from most of the older people I have spent time with.

But you don’t have to wait until we’re 91 to enjoy it. We should rethink what it means to live every day as if it’s your last. The way I learned it from John, it means embracing that part of the end that exists in this moment, and then in the next.

You don’t have to quit your job or stop paying your utility bill. There’s enough to live for in the things you’re already doing. Each brush with a stranger, each moment with friends, each kiss or caress, there’s a little bit of our mortality in all of them. But their ours for now.

And that is reason to be happy.

Complete Article HERE!

Coming to terms with the end of life

by Penny Heneke

[B]eing well ensconced in my senior years, I am faced with the daunting prospect of my mortality. An article I read recently commented that people are afraid to face and to speak of this pending permanent change of address. For me death lurks in the dark like a boogey man under the bed. An elderly, crabby aunt I boarded with as a teenager scanned the death notices each day. She positively cackled with delight when she discovered an acquaintance she had outlived.

Nor is death and dying a scintillating topic to introduce for conversation in an evening entertaining friends. While seniors are renown for recounting “organ recitals” of their many health problems in great detail, death itself is a taboo subject. For some, life is a painful battle against debilitating health issues and for most of us it is trying to find strategies to deal with the everyday evidence of our evaporating capabilities along this final stage of our life journey.

Perhaps a sense of humour is a valuable tool to deal with our aversion to death. A friend on his 90th birthday decided to deal with his advancing age by walking around with a sticky note plastered on his forehead announcing, “expiry date: overdue.”

In the meantime, seniors have to cope with the everyday incomprehensible things we seem to do as we amble along to this dead end. If the solution were only as simple as one friend remarked: “Oh, for some happy pills.”

One morning, my husband, Ken emerged from the unlit walk-in closet attired in my fluffy, light blue, terry housecoat. It fitted him to a tee, as today my hubby is a shell of his former robust five-foot-10. Shrinkage of over 4 inches has occurred due to arthritis. When he realised his faux pas, he looked sheepish and commented: “I’m really losing it.”

I couldn’t laugh too loud as I find myself in the same category. At my recent optometrist appointment, I was squinting through the phoropter the optometrist was using to test my eyesight, not wishing to admit that the finest print was a blur. I had always had 20/20 vision. In an attempt to improve the images, I closed one eye. As the consultation continued with the instrument going back and forth, I suddenly could not see anything in the one lens — just blackness. My optometrist was puzzled and made some lens adjustments.

“Can you see now?” she asked.

“No, it’s still pitch black,” I replied. “I can’t see a thing.”

She sounded puzzled and moved the machine aside. After a moment’s hesitation, she placed a hand gently on my shoulder and remarked: “My dear, you have your eye closed!”

While my vision might be fading fast, Ken suffered a mini-stroke and lost the use of his right eye. Family and friends responded sympathetically by telling him of someone they knew with the same predicament and yet was still legally able to drive. Neither Ken nor I felt reassured learning how many one-eyed people are out there on the roads driving.

I don’t think it was his eyesight that caused Ken to panic as he was leaving for a doctor’s appointment. He patted his pockets frantically looking for his car keys until I pointed out that he had them in his hand.

Never mind the missing death discussion, aging itself takes a great deal of adjustment. My recurrent nightmare of losing my teeth has been replaced by one of losing clumps of my hair and going bald.

After spending a life time amassing material objects, I have reversed the procedure by decluttering. Now I am fine tuning the unburdening of my “stuff.” I am in the last stage, which I am calling, “closure.” This is as close to the “D” word as I can get.

Preparing for the end, I announced to my children that I was drafting my own obituary notice. I don’t trust them to get the facts right. This resulted from my perusal of the obituary notices each day in the daily newspaper. My first feeling is one of sadness looking at all the smiling faces of people who have passed. However, I am also struck by a few who have had unflattering photographs placed with their notice. In order to avoid this dilemma, I have picked a photo — admittedly a good few years younger — of myself for my obituary. My daughters love to tease me by saying that I will have no control over the whole issue. At least I would have tried.

The lyrics from the English punk rock band, the Clash, “Should I stay, or should I go” underscore that we really have little choice in the timing of our departure so it’s best to make the most of what you still have left of life.

Complete Article HERE!

I Am Dying From Terminal Cancer.

Here’s What It’s Taught Me About Living.

Susan, with her hair mostly out from chemo, and her sons Oliver (left) and Nathan (right) at Nathan’s graduation from the National Circus School (background).

By Susan Briscoe

[S]parkling bright and eight months pregnant, my French-speaking surgeon in Montreal, Quebec, was perhaps more direct than she would have been in her native language. She’d just removed my uterus and everything else that I could spare from my abdomen, but she was reporting on what she hadn’t been able to remove of the sarcoma that had, in just the weeks waiting for surgery, spread beyond hope in my belly.

“You will die of this,” she told me matter-of-factly.

Chemotherapy, she said, might give me a few more months if it worked, but those chances were small. So, I consider myself pretty fortunate to still be here a year later.

Pre-diagnosis, I had just turned 50 and was extremely fit, healthy and happy. Nobody could keep up with me! I was excited about life. It had occurred to me that, with my family’s excellent longevity genes — and some good luck — I might very well live another 50 years. I was enthused about the 30 years’ worth of creative activities and research projects that I had ambitiously sketched out for myself. Both my sons, also healthy, happy and on-track, had moved out on their own; and after more than 20 years of solo parenting, I was ready for a little more fun. Deeply aware of and grateful for all the privileges that made my wonderfully full life possible, I figured I had had more joy in life than most would ever have.

But I didn’t get the good luck part, so now I am going to die.

And that is okay.

That was the first thing I told my loved ones. My boyfriend. My parents. My two boys. “I have a very bad cancer. I’m not going to be around much longer. It’s okay.”

They looked so hard into my eyes, gripping my hands, tears streaming down their faces, as I told them this. When I got to the “okay” part, they nodded. They knew I meant it. I was okay. It was okay. They were going to be okay.

Susan getting chemo.

These conversations, especially the one with my boys, were the hardest I’ve ever had. The image of my sons sitting at my hospital bedside and simultaneously dropping to their knees in grief is seared into my mind. Yet these conversations were also the most beautiful I’ve ever had. Though it was terrible to bring them so much pain, I have never felt anything like the outpouring of love we shared in those moments. And it wasn’t long ― that same visit, in fact ― before we were also laughing.

So, one of the first things my diagnosis taught me was that, as much as my dying meant tremendous loss, it also meant receiving gifts of unimagined beauty and joy and love, not just for me, but for my loved ones too.

Many people I meet have imagined me in a state of pure devastation and distress at my diagnosis. Loss brings grief; and because grief is painful, like everyone else, I try to avoid it. But the flip side of grief is gratitude for having had whatever is lost to begin with. I have learned that, to a surprising degree, I have a choice about which side to focus on. I could be sad about all I won’t experience in life ― becoming a grandmother is one of the hardest for me ― or I can be grateful for all the gifts, like my wonderful boys, that I was given and fully appreciated. Choosing a state of gratitude has allowed me to remain happy and even joyous in this time. Yes, there is still grief, but the tears are fleeting, and lately rare.

The Death Project is a blog where I journal about my life with terminal cancer. I wanted people to know that dying doesn’t have to be as bad as we fear.

Talking and writing openly about it has enabled my loved ones and I to feel okay. (My son and a dear friend have contributed to my blog, while my boyfriend has a companion blog and has also written about our relationship for HuffPost.)

It is my hope that our writing will help others face death with less fear and anguish. I always want to say, “it’s not the end of the world!” — though, of course, it sort of is.

Humor has also been a huge help. “I can’t lose my mom and the X-Files in the same year!” my son said in mock despair after he was nearing the final episode of his favorite series on Netflix. His girlfriend was aghast, saying “Too soon!” But it wasn’t too soon for the rest of us.

Allowing ourselves to embrace and even delight in the absurdities of life that can bring anything at any moment has lightened our sadness. It’s also a way into difficult conversations. It’s been hard for my boyfriend to talk about his future without me, so I joke about him bringing a date to my funeral. We agree that he should not be swiping through Tinder during the service ― though it would be fun to compare results before and after his eulogy.

Being so open about my terminal diagnosis was easy for me partly because I was able to accept it immediately. And acceptance was possible because all my life I have been thinking about death and making peace with it instead of fearing it. Having to die when I am still full of vitality has never felt unfair to me. Nor is it a surprise. Death was always part of the deal. And I wanted to be ready whenever it came.

The essayist Michel de Montaigne tells of the skeleton guest at celebrations in ancient Egypt, reminding revelers that there is never a time when death cannot visit, invited or not. And I have heard of another people who keep their own caskets by the front door as a reminder of their own mortality. I like the idea of such memento mori, like a discarded tombstone I once brought home during my youth after visiting a graveyard. I can see now how coming to terms with mortality has been worthwhile not just for the chance moment of a dreaded diagnosis: death has also taught me important lessons about how to live.

Death has shown me that when I am living the life I am meant to live, I am giving. When I discovered I would die sooner rather than later, my most urgent concern was that I didn’t have long to give all I had to the world. On a practical level, this meant getting my affairs in order: a lot of work since my will needed updating. Amid that long and tedious process, I wondered how people managed to die suddenly. There was so much to do!

But giving is much more than a list of bequests. I have also given to society through my teaching job, volunteer work and charity. But most importantly, I continue to give of myself. In my personal relationships, this means my affection, my compassion, my friendship and my love. I’ve had to remind my boyfriend that just because I’m the one who’s sick doesn’t mean I can’t still take care of him at times. Since he is jealous of our cat, I try to favor him with the head rubs. I love to give a smile to strangers, knowing many will pass it on. I try not to give unwanted advice to my sons, but I keep failing. And they still won’t dress warmly! There are so many ways to give: a word of encouragement; a compliment; any act of kindness, however small or brief. I want to give as much as possible, and not just to my dear ones but to everyone, to the whole dear world that I have loved so much.

But giving sometimes triggers grief when I know these opportunities are coming to an end. Like the 4:30 a.m. ride to the airport that I offered my younger son when he was nervous about missing his flight for his first professional tour as a circus performer ― the last ride I figured I would ever be able to offer him. Turns out, he slept through the doorbell, through my texts and phone calls, and through his circus partner’s texts and calls. I ended up pounding on his door until I finally managed to rouse a roommate who let me in to find him still soundly sleeping. We both knew it was the last time I would be able to rescue him. Losing his mother means growing up faster than he might have otherwise (though we also both know that in less practical terms I will always be there for him). He’s going to be okay.

I am aware too that my giving will have to switch to receiving as my disease progresses. Learning to ask for and accept help has been the hardest challenge for me, accustomed to being the competent, independent caregiver myself. Trusting others to load the dishwasher properly is still a struggle! But I remind myself that giving others the opportunity to give is also a gift.

I know there can be no regret in a life lived giving in this way. Though I’m not particularly concerned about immortality, I can also see how it resides in this giving: much of what I have given will still be there in the world when I go. That is what lives on. And the most powerful of those gifts, the one that surely never dies, is love.

So how do I live while dying? Ideally, the same way I have lived my life.

Susan on her 50th birthday

Complete Article HERE!

Living like I’m dying

I’m leaning into death to see if I can change how I feel about it.

By

[I] imagine I’m not the only person who’s written their own obituary, but maybe I’m the first one to see it in print. Writing my obit was the first task in an exercise that came to an end yesterday.

“Brown, Laurie Jane. (October 7, 1957 – March 4, 2018). Laurie died suddenly yesterday in Toronto at age 60.”

I feel like Scrooge seeing his own gravestone.

I am in perfect health, but having recently turned 60 years old, I am feeling an increasing urgency about, well, everything. Why not give myself the deadline to end all deadlines? On Dec. 4, 2017, I decided I had three months to live. Three months to make more of whatever time I have left.

So for the past three months I have been thinking about death everyday. “Is this the last time I hand wash this sweater? Is this the last time I talk with my son?” It was jarring, but I kept going. I wanted to get to a less anxious feeling about my own mortality. By trying to live as if I was dying, would I live each day differently? Might that take some of the sting out of my impending death? Is that even possible?

The first thing anyone with three months to live is told to do is “get your affairs in order.” I updated my will and my living will. Next, I collected all my banking and legal information and printed it. (Kids – it’s in a bankers box on the floor of my closet, along with the full obituary.)

I started my death exercise without telling anyone. Good thing – I could have ruined a few dinner parties. I did let one girlfriend in on it and her response was “March is still too cold to stand by your grave. Can you make it May?”

With two months left on the calendar, I flipped between two very different states of mind. On a good day? I believe I’ve had a full life, a lucky life and I’m good to go right now. But on a bad day, it’s a different story: I want to be a grandmother, I want to create more, I want to grow old. My children need me and my new partner needs me. I couldn’t bear to contemplate the end of a love I had barely begun.

I never used to think about death until my mother died at 58 of ovarian cancer. I was terrified that would happen to me. Now, I scroll through my Facebook feed reading chemo updates and news of departed friends. I feel like death is hunting me and my senses are working overtime to hear the approach. I don’t want to live in fear – so I’m leaning into death to see if I can change that.

Each morning, I opened my eyes and thought of the day in front of me. I paid attention to the morning light through my window, the luxurious feel of my bed sheets, the realization that I had no pain, and I felt great. My feet hit the floor and I jumped into my day joyously. My mantra became ‘say yes until it breaks you.’ I was sounding like an inspirational poster, with kittens. And yet, I didn’t feel as if I was truly living each day like it was my last.

Too embarrassed to talk to people about what I was up to, I turned to books. Die Wise by Stephen Jenkinson struck a huge nerve.

Stephen has been witnessing death for decades, both as head of a palliative-care unit in Toronto and as a “grief whisperer,” helping the dying and their families navigate death. Stephen has no 10-step plan to a wise death but talking about it with him on Pondercast, my podcast, was such a relief.

When my mother lay sick and dying, I felt frozen and mute, and she was keeping what she felt to herself. Probably because I didn’t ask. I have terrible regret about that. I know I’m not alone in these feelings after a parent dies.

We live in a death-phobic culture. We don’t acknowledge dying people, we keep turning the conversation in the other direction, toward life and “keeping up the fight.” We institutionalize our terminally ill and our aged and we outsource the task of dealing with our dead. Illness and death are kept as far from the living as possible – it’s no wonder we are at a loss to find anyone to talk about it with.

In the same way that women have fought to take back the birth experience – bringing it home, surrounding birth with family and siblings, making it a human experience instead of a medical one – might we do the same thing with death?

I began to question my motives in taking on this three-month death exercise. It became clear that I was anxious to learn how to handle death. I wanted to bring order to the chaos of feelings I had. I thought I could learn to embrace death just enough to think I had it pegged.

My experiment is a pale shadow to the real thing. It doesn’t compare to the anxiety and fear felt by those who are truly ill. Nor what I once felt waiting for a biopsy report.

I can’t embrace death, death will embrace me. It will have its way with me. It will be messy and confusing. Death will ask everything of me. Will I be able to accept that? Is it too much to ask that that I might I leave my life loving it?

Perhaps the strangest outcome of this morbid exercise is realizing I have a moral obligation in my final days. Dying will be my last and perhaps most important act of parenting. I need to show my children how it’s done. That death carries with it a responsibility is helpful to me, it gives my death some purpose.

I have started awkward and halting conversations about death with my father, and have asked him to let me in. I want him to share his coming death with me. It will help me when my time comes.

Keeping death in the forefront of my mind is informing everything I’m doing. It’s a funny liminal place to be – but the balance of it feels right.

Laurie Brown lives in Toronto.

Complete Article HERE!