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Burials, cremations, dissolving: the new ways to die well

BY STEPHANIE BOLAND

new ways to die well

Life after death is changing – thanks to scientific innovation. The best time to plan is now.

What happens to us after we die? It is one of the most profound spiritual questions, but also a practical puzzle. After all, whatever you believe happens to the soul after death – if you believe in a soul at all – there is irrefutably a body for someone to deal with. While there are many emotions that can make it hard to think about what you want to happen to your body, it need not be traumatic.

At least, that is what the researchers at the Corpse Project want to remind people. Set up last autumn and funded by the Wellcome Trust, this UK research programme has just published its first findings on what we might do with our bodies after we die.

I meet Sophie Churchill, the project’s founder, at a café in Queen Mary University of London. The goal, she tells me, is to help find ways to “lay our bodies to rest, so that they help the living and the Earth”. It’s not a case of being dispassionate but rather a quest to balance the social and cultural aspects of death with the scientific.

Sometimes, aspects of death that people initially baulk at can become more acceptable through conversation. One relatively new process, sold as a greener alternative to cremation, involves dissolving the body in heated alkaline water. “I was with 15-year-old urban teenagers, and you could see them scowling at the thought of being dissolved. But the more we talked about it and considered how odd it would once have seemed to go into machines and be cremated, [the more] they started to reconsider.”

Churchill points out that cremation, too, is a relatively recent phenomenon. The first official cremation in the UK took place in 1885, and it was only in the 1960s that the Catholic Church, for instance, accepted the practice and lifted its ban. Now, over 70 per cent of people who die in Britain are cremated.

Churchill is discovering that people can be open-minded, even if their beliefs are initially strongly held – though she admits that it may “still be a generation or two before new forms are accepted”.

“People will say, ‘Mourners always need a place to return to, to memorialise.’ But there are lots of people who do scatter ashes.” So, part of rethinking death might involve reassessing what we are comfortable with. I wonder if our general reluctance to talk about death makes it less likely that we will encounter different perspectives on how to deal with bodies.

Churchill’s studies with teenagers seem to support this. When asked to think about their own deaths, many of them were quick to engage with the idea, she says – “Being sent out to sea and burned in a boat, Viking-style, seemed to be very popular!” – and it was often their teachers who were more squeamish.

The Corpse Project is just one of a growing number of organisations committed to tackling the discomfort around death and dying. The Order of the Good Death was founded in 2011 by the mortician Caitlin Doughty and aims to “make death part of your life”.

The group of academics, funeral industry professionals and artists encourages people to educate themselves about dying, and even to become “death positive” by learning to accept and engage with their mortality. Its website covers everything from sky burials, in which corpses are left to be eaten by the birds, to how it feels to bury a relative if you’re a funeral director.

So what are the best options for someone wanting an environmentally friendly death? Until new methods such as dissolving become easily available, small tweaks can make a big difference. Doing cremation well, for instance, is important: the Corpse Project’s work partly involves investigating what sort of schedule allows crematoriums to operate at maximum efficiency.

If you want to be buried, it might even be a case of choosing a sustainable wood for your coffin. The Corpse Project is also investigating optimum burial depths and whether burials could be done strategically to enrich the soil where this is needed.

“But science never changes opinion by itself,” Churchill says. Luckily, every death is different, and can be a chance to invent meaningful rituals that incorporate innovative methods. The important thing, she stresses, is to think about it early, as one would with a will or life insurance.

“One day, this hand . . .” – she lays her hand on its back, limply – “. . . will do this. Twelve hours later, it’ll be a bit pale and clammy. And that will be it. The day will go on, with people going on having coffees, and so on.” She looks around her at the students milling in the sunshine. “To me, the last big challenge is to do that well.”

Complete Article HERE!

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Exhibition reveals lessons in life from patients nearing death

by Naomi Pfefferman

Nelly Gutierrez, 63, is among those featured in the exhibit and book “Right, before I die.” The Sylmar resident is living with several serious illnesses.
Nelly Gutierrez, 63, is among those featured in the exhibit and book “Right, before I die.” The Sylmar resident is living with several serious illnesses.

Five years ago, Nelly Gutierrez was devastated by the news that she would need to undergo dialysis for her failing kidneys three days a week for the rest of her life. The Sylmar resident, now 63, also suffers from heart and lung disease, she told the Journal. But it was her diabetes that had wrecked her kidneys and caused her body to swell painfully. A kidney transplant wasn’t a sure thing, and the three-hour dialysis sessions would leave her weak and uncomfortable.

After receiving her diagnosis, “I stopped taking my medications — I just wanted to die,” Gutierrez said in the text interview that accompanies her photograph in the exhibition “Right, before I die,” which will be on display at the Museum of Tolerance (MOT) from Aug. 15 through Sept. 30. “I cried every day and didn’t want to do anything anymore. I gave away all of my stuff.”

A year later, Gutierrez prayed to God for help as she struggled with wanting to end her life. Soon thereafter, she got the idea to volunteer at a senior center, working with elderly people also facing issues of life and death. The endeavor gave her own life meaning, even as her body continued to fail. “My joy is to see people smiling and to have the courage to go on with their lives,” she told the Journal.

Gutierrez is one of 20 patients profiled through photographs, text interviews and handwritten letters in Andrew George’s “Right, before I die”; she is the only one of his subjects still alive. In her portrait, she appears dignified and well dressed, with a bandage from a dialysis treatment peeking out from behind her blazer.

The subjects also include Sarah, who appears to be in her early 30s and is bald from chemotherapy yet smiling faintly. In her text interview, Sarah declares, “Time is so precious. God, it’s precious.”

Then there is Michael, a former junkie who went on to found eight Christian missions in Mexico, where he regularly provided food and supplies to the communities. “I can walk out of this earth with my head help up high and just go the way I came, naked,” he says in his interview.

Press materials for the exhibition note that the show is intended as a “counterpoint” to California’s End of Life Option Act, which went into effect on June 9. The law gives terminally ill patients diagnosed with six or fewer months to live who have the capacity to make medical decisions the right to seek a lethal prescription from a physician. Most Jewish groups have opposed the law because of the concept of pikuach nefesh — the mandate to protect human life.

“At its core, the exhibition speaks to the importance of human dignity, which is an essential theme of the Museum of Tolerance,” Liebe Geft, director of the MOT, said in an email.

Dr. Ira Byock, a leading expert in palliative and hospice care who has vociferously opposed doctor-assisted suicide, helped arrange for the exhibition to be sponsored by the Providence Institute for Human Caring, where he serves as chief medical officer. “This is our attempt … to open a window into the lived experience of illness and dying,” Byock said during an interview in his Torrance office. “What you find … when you look at these pictures and read some of the quotes is the surprising fact that, first, these people are living during the time that we would consider them to be dying. In addition to the struggles and the sadness and all of the challenges that death represents, this sense of well-being … is also possible.”

George, who supports the End of Life Option Act as a means to offer an additional choice to the terminally ill, was not considering politics when he set out to create his exhibition in around 2011. Rather, he was prompted to embark on the project after attending the funeral of a friend’s mother five years ago. “She was so loved by everyone, and I wondered, how do you create that effect during your lifetime?” George, whose studio is located in West Los Angeles, said in a telephone interview. “I thought this woman had figured something out that we can all learn from. So I wanted to make a project about people [like her].”

George chose to focus on seriously ill and dying patients who had overcome the fear of death and could impart a degree of wisdom about life. To find potential subjects, he approached officials at dozens of hospitals and hospices around Los Angeles, all of whom turned him down. But in 2012, Dr. Marwa Kilani at Providence Holy Cross Medical Center seemed to understand his goals and agreed to refer him to patients who displayed a particular kind of grit.

Photographer Andrew George
Photographer Andrew George is based in Los Angeles. His work has been in 18 international exhibitions, most recently at Musea Brugge in Belgium.

Whenever he heard from one of these patients, “I would drop everything and drive an hour to the hospital, sit with them for four or five hours and ask the 37 questions I had come up with,” George said. Those queries included, Do you have any regrets? What brings you joy? And do you experience love?

Yet George eschewed asking his interviewees to disclose their illnesses, religious background or past professions. “I wanted to cut through anything that might create a barrier between viewer and [subject],” he said.

To shoot the patients’ photographs, George used a medium format Hasselblad camera, “which captures every hair and imperfection,” he said. In his photographs, each person’s head is life-size, “so it’s like you’re looking through glass and actually viewing the person.”

The project wasn’t without challenges. “These people were often withered; they weren’t presenting the best of themselves,” George said. Further, as the photographer, he struggled to “find something beautiful” in the patients amidst the hospital’s fluorescent lighting and bland décor. “I strove to celebrate the soul of each individual,” he said. “In their own way, each of my subjects was enlightened.”

George and Byock — who traces his concern for the value of all humans to his Jewish background — will speak at the show’s opening reception at the MOT on Aug. 18.

“I’m going to talk about the importance of this cultural moment, in which the baby boomers have become the silver tsunami,” Byock said. “In our culture, we are living with people who are older than ever before in human history.

“So many people are living quite well, and often for many years with diseases that would have killed them [in previous generations]. Yet culturally, we have not developed to make full use of these unprecedented changes. … This exhibition is another opportunity for us to grow the rest of the way up.”

Complete Article HERE!

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Boy’s summer spent caring for grandma’s dying dog

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Trevor Lilley, 10, devoted his summer to taking care of his nana's dog. Hershey, 4, was dying of cancer.
Trevor Lilley, 10, devoted his summer to taking care of his nana’s dog. Hershey, 4, was dying of cancer.

Rubbing his hand over Hershey’s head, Trevor Lilley adjusted the paws of the chocolate lab laying on his lap.

Hershey looked up at the 10-year-old boy briefly before dropping his head down again.

Hershey was mostly lying on a dog bed at the end of a couch, but Lilley had carefully squirmed beneath the dog to pet his face and shoulders.

Beverley Brown, Lilley’s grandmother, watched the two as tears filled her eyes.

In June, Hershey, who had just turned 4, was diagnosed with cancer. Since that time, Brown’s grandson had cared for the dog.

“They gave us some options,” Brown said. “But none of them were good.”

Brown said she had gone on vacation in June and when she returned, the family noticed Hershey had a slight limp. At first, the family vet thought Hershey had torn a ligament, Brown said. But when the dog’s condition continued to deteriorate, additional testing revealed a cancer diagnosis.

“They showed us the X-rays and his whole pelvic bone looked like a sponge,” Brown said. “It was completely full of cancer.”

“It looked like it had dissolved,” Lilley said as he reached for a dog toy.

Brown was told Hershey’s leg could be amputated, but the dog would still require chemotherapy and his diagnosis for survival after the surgery was only eight to 12 months. The family discussed putting the dog to sleep, but the vet did not feel it was time, Brown said.

Beverley Brown talks about her grandson who cared for her dying dog this summer.
Beverley Brown talks about her grandson who cared for her dying dog this summer.

We weren’t sure what we were going to do,” she said. “He wouldn’t eat and wouldn’t drink so we just kind of made him hospice.”

Brown, who works as a hospice nurse, said her grandson offered to spend his summer caring for Hershey who required medication 24 hours a day. He told his grandmother he would come to stay at her house while everyone was at work.

“Usually he just sleeps all day,” Lilley said.

But Lilley’s return to school this week meant no one could stay at home with Hershey to give him his medicine, help him outside or clean him up after he went to the bathroom.

Seeing the dog struggling with pain, the family said it was time to euthanize Hershey and made special arrangements last Saturday for the procedure.

Sitting in their living room the day before Hershey was put to sleep, Brown and her husband openly grieved for a loss that had yet to occur.

“This dog was a holy terror when we got him,” Brown said. “He chewed everything he could chew.”

Lilley was quick to point out the corners of the coffee table and end tables that showed signs of a nibble or two.

Roland Brown, Lilley’s grandfather, listed various items that had found their way into the chocolate lab’s mouth, including a remote starter for a vehicle and a television remote controller.

“He dug up the electric fence,” Lilley said tossing a red ball toward Hershey who showed no interest in playing.

“The first year got pretty expensive,” Roland Brown said with a laugh as he brushed away at the wetness near his eyes.

“We contemplated getting rid of him,” Beverly Brown said trailing off in silence.

Hershey was on pain medications, his owner said, and had stopped eating before he was put to rest.
Hershey was on pain medications, his owner said, and had stopped eating before he was put to rest.

Lilley stayed pretty quiet during the discussion and was willing to talk about other family pets, but contributed little to the conversation about Hershey.

Ginny Brancato, founder of RainbowsBridge.com, said Lilley’s silence is common for a child of his age.

Brancato, who lives in Florida, started a website for people who have lost a pet in 1998. She now has more than 20 years of offering free online grief support to people of all ages and a website with more than 10,000 pet memorials.

“I looked for someone to help me when I lost my cat FiFi, but there was nowhere to go for pet loss,” she said.

Brancato set up a grief support system that includes forums, chat rooms, tips and advice for those grieving a pet along with memorials to celebrate a pet’s life. She was touched by Lilley’s care of his grandmother’s dog.

“People don’t realize how traumatic and confusing death can be to a child,” she said. “He needs permission to work through his grief.”

RainbowsBridge.com offers a number of tips for children coping with pet loss such as encouraging a child to talk freely about a pet and discussing death and dying after the pet’s death.

“It’s final and sometimes kids don’t get that,” Brancato said. “And society makes it harder for little boys to grieve because they are told not to cry. Often the first thing they ask when they do talk, is ‘why?’”

She suggested things like planting a tree in a pet’s honor and donating time at a local shelter as ways to help older children with the grieving process.

Beverly Brown said Lilley did not talk about Hershey’s death until this week.

“Yesterday, he finally asked me for details,” Beverly Brown said on Friday. “He asked me questions about the euthanasia process and how Hershey did. I said, ‘you know Trev, it was very peaceful.’”

Beverly Brown told her grandson how Hershey had licked her in the face right before a serum that ended his life was injected.

“He said, ‘Nana, he was just telling you he loved you and thank you,’” Beverly Brown said. “I told Trev, I felt like that was exactly what he was saying.”

Complete Article HERE!

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Never Too Old to Feel Orphaned

Mourning Parents in Middle Age

By Jo McGowan

Mourning Parents in Middle Age

I was nine years old when my father’s mother died. I still remember hearing the phone ring and knowing—instantly—that Grandma was gone. I was already in bed for the night but I ran down to the kitchen where my mother was on the phone with my father, who had been with my grandmother in the Rose Hawthorne Hospice. My older sister had also come running into the kitchen, and we held each other tightly in that tidal wave of grief and disbelief. It was the biggest and the worst thing that had ever happened to us.

In the middle of it all, sitting on the couch with Mom, waiting for Daddy to come home, I suddenly realized that my father was now an orphan. He was forty-five (touchingly young to me now). I remember meeting him at the door when he came home and thinking how brave he was, how strong. Years later, in my twenties, I understood that being “orphaned” at forty-five was not what I thought it was when I was nine. Now that I am fifty-eight and an orphan myself, I realize that it was worse. But also better.

My mother died eight years ago, my father a little less than a year ago. I’m still emerging from those twin losses. I don’t think I will ever be the same. I still wake sometimes, panicky, in the middle of the night wondering where they are. I still think of things I want to tell them. I still wonder what they would make of my life, my dreams, my stories. I still have questions that only they could answer. I miss them. Dreadfully and physically. There is a void in the center of my heart. I ignore it most of the time and carry on, because that’s what we do. But something has been torn out of me. Yet, strangely, I think I’m a better person now.

Does anything ever prepare us for the loss of our parents? When I was a young adult, I believed that when you reached your forties and fifties, you were beyond needing your parents. I was closer to the truth when I was nine. By the time my own parents died, everything had shifted. They were no longer the center of my life, and their new dependence meant that, whenever I was with them, I took on the role of parent myself, guiding them, making their decisions, steering them through life as I saw fit. That fact somehow made me feel I would be ready to let go when the time came.

But something funny happened when the time came. Time sped up or telescoped or folded in on itself—I don’t understand it and I don’t know how to describe it—and I found to my surprise that the immediate past had merged with the distant past to make a coherent present that was whole and entire of itself. Mom and Dad were young when I first met them—in their early thirties. As I grew up, I listened to their stories of times before I was even born, when they were younger still. I lived with them through their middle years and absorbed their lives without even being aware that I was doing so. I got married when they were the age I am now and I remember thinking in my youthful self-absorption that their lives were ending as mine was taking off.

Of course, that wasn’t true: their lives remained as full and as busy as mine is today, and I can see this now. But it took their deaths for me to understand fully the complete human beings they were—to realize that they had once been children, teenagers, college students, young adults, and that all of those selves were contained in the selves I knew as a child and took care of as an adult. They had friends, ambitions, secret fears. They had regrets. They had love. I, who loved them unconditionally my whole life, feel as if I am getting to know them at last. Now that they are gone, the complexity and richness of their lives is so much clearer to me. I wish I could talk with them again. I would ask for their thoughts on some of the things that I am thinking about now. I would go with them for long walks. I would introduce them to podcasts. We would discuss politics.

I find myself constantly calculating their ages in relation to my own, as if they are contained within me, living through me and I through them. They are a part of me now in ways they never were when they were alive and my love for them feels deeper and more complete. St. John Chrysostom is supposed to have said: “Those whom we love and lose are no longer where they were. They are now wherever we are.” It’s a pretty thought, and a comfort. Now I see it is also the plain truth.

Complete Article HERE!

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My grandmother’s last months

By Gaia Squarci

Chiara Micheletti helps her mother Marisa Vesco take a shower in Cossato, Italy, June 7, 2015.
Chiara Micheletti helps her mother Marisa Vesco take a shower in Cossato, Italy, June 7, 2015.

My grandmother’s life and mine overlapped for 27 years. I always called her “Nonna.”

Our age difference and profoundly contrasting values and way of thinking did not prevent us from developing a strong bond and a relationship punctuated by mischievous games and moments of tenderness and humour. We were amused by our differences.

001

“You know, I was still young when you were born,” she told me a few weeks before she died. “It’s a little like we grew up together.”

At a lunch table a few months earlier in Milan, I learned from my mother, her daughter, that Nonna, 85, suffered from incurable liver cancer. Years before, she had already survived two bouts of breast cancer.

002

Nonna would tell me time and time again that the news of my birth had given her the strength to fight.

When I learned that she was sick again, I had just landed in Italy, where I would be for only three days before flying back to New York.

003

Even more heartbreaking than the fear of saying goodbye to her was the fact that my grandmother did not know how sick she was. My mother and aunt believed she could not bear the thought of a third bout with cancer, this time, affecting her liver. Nonna was told by family members that her liver was ill.

004

No one ever mentioned the word “cancer.”

Because of this, one question haunted us until the day she died: Did we have the right to know the truth about her condition when she did not?

005
Marisa Vesco embraces her nephew Luca Squarci.

Nonna spent most of her last months at home, surrounded by family. She reconciled with the idea of death and said she could slowly feel it coming.

Doctors felt that surgery and chemotherapy would be pointless.

006

In the midst of all this, I realised my mother was losing her mother.

After moving back to Italy for a few months, I witnessed the range of my mother’s emotions and the energy she devoted to the time they had left together.

Nonna’s world shrank to a few walls and fewer streets. In this narrow existence, every detail and daily act took on deeper meaning.

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One of the things my mother treasured most was giving her mother a bath. She did not hesitate to touch her old body, and she did not want others to do it on her behalf.

I joined my mother and grandmother in the bathroom to quietly observe them with my camera.

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As I experienced those precious moments, I imagined myself at an older age and thought about how time changes one’s perspective on being a woman.

As my grandmother faced my lens, completely naked, her body bearing the signs of past and present illnesses, she did not show the slightest bit of shame – only trust and pride.

009

If you spoke with people in Nonna’s town they would say she never left the house without being enveloped in a cloud of perfume, her white hair perfectly coiffed and her face tinged with makeup.

I was surprised by the way she confronted being ill without losing her femininity. She was able to poke fun at herself. More than once she asked me, “Am I going to end up on Vogue or Marie Claire?”

010

On Oct. 11, 2015, the day Nonna died in Biella, Italy, I was across the world in Brooklyn, New York. I had spent five months with her, celebrating her life instead of mourning her death.

I remember taking a walk through the Greenpoint neighbourhood of Brooklyn and staring for a while at kids competing in a race. I was unable to come to terms with the fact she was no longer a part of the world around me.

I struggled with the concept of death and the abstract emotion we call grief. I found peace only when I returned to Italy to spread Nonna’s ashes.

011

My family and I walked to Nonna’s favourite place in the mountains not far from Cossato in northwestern Italy, the town in which she had grown up.

Her ashes felt heavy in my hands. I threw them far up into the air, and they fell all over the grass, and all over me. My mother, brother and aunt did the same, again and again.

In the end, we were covered in Nonna’s ashes and so was the field around us.

Months later, my mother sent me a photograph of that field. It was completely covered in flowers.

Complete Article HERE!

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Assisted-living facilities limit older adults’ rights to sexual freedom, study finds

Georgia State University

senior intimacy

ATLANTA — Older adults in assisted-living facilities experience limits to their rights to sexual freedom because of a lack of policies regarding the issue and the actions of staff and administrators at these facilities, according to research conducted by the Gerontology Institute at Georgia State University.

Though assisted-living facilities emphasize independence and autonomy, this study found staff and administrators behave in ways that create an environment of surveillance. The findings, published in the Journals of Gerontology: Social Sciences, indicate conflict between autonomy and the protection of residents in regard to sexual freedom in assisted-living facilities.

Nearly one million Americans live in assisted-living facilities, a number expected to increase as adults continue to live longer. Regulations at these facilities may vary, but they share a mission of providing a homelike environment that emphasizes consumer choice, autonomy, privacy and control. Despite this philosophy, the autonomy of residents may be significantly restricted, including their sexuality and intimacy choices.

Sexual activity does not necessarily decrease as people age. The frequency of sexual activity in older adults is lower than in younger adults, but the majority maintain interest in sexual and intimate behavior. Engaging in sexual relationships, which is associated with psychological and physical wellbeing, requires autonomous decision-making.

While assisted-living facilities have many rules, they typically lack systematic policies about how to manage sexual behavior among residents, which falls under residents’ rights, said Elisabeth Burgess, an author of the study and director of the Gerontology Institute.

“Residents of assisted-living facilities have the right to certain things when they’re in institutional care, but there’s not an explicit right to sexuality,” Burgess said. “There’s oversight and responsibility for the health and wellbeing of people who live there, but that does not mean denying people the right to make choices. If you have a policy, you can say to the family when someone moves in, here are our policies and this is how issues are dealt with. In the absence of a policy, it becomes a case-by-case situation, and you don’t have consistency in terms of what you do.”

The researchers collected data at six assisted-living facilities in the metropolitan Atlanta area that varied in size, location, price, ownership type and resident demographics. The data collection involved participant observation and semi-structured interviews with administrative and care staff, residents and family members, as well as focus groups with staff.

The study found that staff and administrators affirmed that residents had rights to sexual and intimate behavior, but they provided justifications for exceptions and engaged in strategies that created an environment of surveillance, which discouraged and prevented sexual and intimate behavior.

The administrators and staff gave several overlapping reasons for steering residents away from each other and denying rights to sexual and intimate behavior. Administrators emphasized their responsibility for the residents’ health and safety, which often took precedence over other concerns.

Family members’ wishes played a role. Family members usually choose the home and manage the residents’ financial affairs. In some instances, they transport family members to doctor’s appointments, volunteer at the facility and help pay for the facility, which is not covered by Medicaid. They are often very protective of their parents and grandparents and are uncomfortable with new romantic or intimate partnerships, according to staff. Administrators often deferred to family wishes in order to reduce potential conflict.

Staff and administrators expressed concern about consent and cognitive impairment. More than two-thirds of residents in assisted-living facilities have some level of cognitive impairment, which can range from mild cognitive impairment to Alzheimer’s Disease or other forms of dementia. They felt responsible for protecting residents and guarding against sexual abuse, even if a person wasn’t officially diagnosed.

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Co-authors of the study, Georgia State alumni, include Christina Barmon of Central Connecticut State University, Alexis Bender of Ripple Effect Communications in Rockville, Md., and James Moorhead Jr. of the Georgia Department of Human Services’ Division of Aging Services.

The study was supported by a grant from the National Institute on Aging at the National Institutes of Health.

Read the study HERE!

Complete Article HERE!

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Mario Fonovic on accepting death and smiling in the face of terminal cancer

By Brett Williamson

Mario Fonovic seated in the palliative care ward of the Queen Elizabeth Hospital.
Mario Fonovic seated in the palliative care ward of the Queen Elizabeth Hospital.

At 55 years of age Mario Fonovic is in the final stages of terminal lung cancer. He doesn’t expect to see the end of 2016, but he is refusing to go without a smile on his face.

“I’m a doer,” Mr Fonovic told 891 ABC Adelaide‘s Mornings program.

Mr Fonovic joined the program to discuss a topic most people dread — death.

“I’ve arranged my funeral right down to my flowers — but don’t bring tissues, bring a tambourine,” he said.

Mr Fonovic said he was neither sad nor scared of his approaching death, and had decided to share his journey on Facebook.

“I can see what is happening to my body,” he said.

“I feel it, I can see it and eventually I will end up in a coma.

“If I can help one person accept death or dying or cancer [I will].

“Just accept what is happening in your life and get on with it, because life is short.”

Looking back on his life, Mr Fonovic said he wished he had only done one thing differently.

“My one and only regret is that as a gay man I never fought to have a child,” he said.

Mr Fonovic said he was lucky to have legally married his partner Sid in a ceremony in California before legislation there changed.

The two plan to move into a newly purchased home together this week and Mr Fonovic is determined he will not die in a hospital.

Too many hospital visits

Mr Fonovic has spent his fair share of time in and out of hospital since being diagnosed with asthma eight years ago.

Being a long-time smoker only made his condition worse.

“Four years ago I coughed … after having one of my last cigarettes and blew a hole in my left lung,” Mr Fonovic said.

His left lung had deflated and he struggled to breathe.

After a week in hospital being treated he was sent home, but within six hours he was back in the emergency department — his left lung had deflated once more.

After another round of treatment Mr Fonovic’s life began to return to normal.

Eighteen months later Mr Fonovic was back in hospital — this time his right lung had collapsed.

“I ended up looking like the Michelin Man as air was leaking into my body,” he said.

He was placed in intensive care and surgeons removed a third of his right lung.

In December 2015 Mr Fonovic visited a respiratory physician to check whether he would be suitable for a lung transplant.

Mario Fonovic having his chest scanned
Mario Fonovic having his chest scanned

During a routine scan the doctor discovered cancer.

“I was so happy the day that I went on the transplant list … because I wanted my life back,” he said.

“In one breath I went, ‘yes’ — and then it was cancer.”

Getting on with it

A burst of stereotactic intense radiotherapy saw Mr Fonovic end up with an infection and he was once more admitted to hospital.

“On the second of May [my doctor] shook my hands and said, ‘you are in remission’,” Mr Fonovic said.

“In the following week I went downhill to the point where I couldn’t walk down my hallway.

“I felt like a semi-trailer had parked on my chest.”

Three weeks later Mr Fonovic admitted himself into hospital for a follow-up scan and found out the cancer had returned.

“The PET scan actually showed how bad it is,” he said.

“Not only had I got the cancer back, but it had taken over the whole lung.”

The lymph nodes on the side of his lungs had stimulated the nerves on his spinal cord and were causing him immense pain.

With the firm belief he would not see his next birthday, Mr Fonovic said he decided all he could do was face death.

“You just put your feet on the side of the bed, pull your trousers on and get on with it,” he said.

The cancer may have wreaked havoc on Mr Fonovic’s body, but mentally he is nowhere near finished with life.

Complete Article HERE!