– Meet The Death Positive (Or Accepting) Practitioners
Have we lost the ability to die ‘well’?
By Tessa Dunthorne
Dead Uncertain: Why We’re Disconnected From Death
‘I was lucky, in a way,’ considers Dr Emma Clare. ‘I was brought up by my grandparents, so I always had that awareness that they were closer to the end of life than most people’s parental figures. We were also very immersed in nature, my grandad always outdoors in the Peak District, and bringing home dead wildlife to look at and appreciate. We especially liked birdwatching, and sometimes he’d find [dead] birds, like hawks, that you don’t often get to see up close – he’d call me outside, we’d have a look, and we’d be like, “wow, isn’t life amazing”.’
Emma is an end of life doula and has a PhD in death competency from the University of Derby. Not dissimilar to the doulas who stand alongside midwives for new mothers, she is one of the palliative and post-life care workers who step up in difficult times to hear the wishes of the dying, facilitate conversations for newly bereaved families, and provide a strand of support that the medical system cannot give. In short, she – and her peers – are the people who make death a bit more human – because, essentially, we’ve lost the ability to die well. And it’s come in no small part from our increasing disconnection from nature.
In a recent episode of environmental journalist Rachel Donald’s podcast Planet: Critical, agroecologist Nikki Yoxall bemoans how we’ve begun to think of death in nature as a waste – as something we should try to fix. She argues that we’re increasingly ‘cleansed from decay’, a cycle within which all living things exist; that the invention of plastic itself can be credited with this alienation, as a material that defies that natural cycle with its foreverness.
We’re experiencing a nature deficit, and this is impacting our ability to connect with natural cycles
We’re also experiencing a wholesale nature deficit. Rewilding Britain suggests that 90 percent of our time is now spent indoors; we’re less food and nature literate, too The biggest indicator of this is how we’re living beyond the limits of nature, having transgressed six of the nine planetary boundaries set out by climate scientists. But it’s also cropped up in an unexpected way: how we interact with and experience the inevitability of death.
Like plastic, we’re now approaching a technological crux in history where we can (to an extent) deny the natural cycle of life and death (just look at the tech bros in Silicon Valley dropping millions in the search for everlasting life). Human beings have also, of course, made strides in medicine that have almost doubled our lifespans. But by doing so, argues Emma, we have also medicalised our experience of death.
‘Medical advancement is obviously a good thing,’ says Emma, ‘but it makes us feel like we’re aside from nature – that we can conquer death. And we think we know how to avoid it, when actually we don’t – we only know how to prolong the dying process.’
Dr Kathryn Mannix, the palliative care doctor behind With The End In Mind (William Collins, £9.99), argues that medicalisation has radically altered our experience of death. Or, rather, ended our experience of death. ‘Instead of dying in a dear and familiar room with people we love around us,’ she states, ‘we now die in ambulances and emergency rooms and intensive care units, our loved ones separated from us by the machinery of life preservation.’
Emma agrees. ‘One of the reasons that this discomfort starts in society is that a lot of our deaths are now behind closed doors, whereas even a hundred years ago, most people died at home with kids around.’
University of Exeter’s Dr Laura Sangha, a specialist in early modern death cultures, points out that frequent observance of dying in the past didn’t affect the gravitas of loss. ‘Seeing death more, particularly among young children, didn’t mean you grieved less,’ she says, ‘evidence points to parents and children having strong bonds, and parents experiencing heartbreaking suffering when they lost their offspring. But the fact that it was more likely to happen would have meant that you developed strategies to emotionally prepare.’
Other cultures still retain this emotional preparedness, suggests mortician-cum-YouTuber Caitlin Doughty in her book From Here To Eternity (Orion, £8.99). It sees her go around the world following different practises of mourning and burial. She found that Westernised society has shed holding space for the bereaved to grieve openly and without judgement.
In contrast, she found that the Toraja people, from South Sulawesi, Indonesia, embalm the bodies of loved ones and maintain them for years after a person dies, until their burial (after which they are often exhumed on special occasions). In Belize, families bring bodies home from the hospital for a full-day wake and pre-burial preparation, rubbing loved ones in rum to help release rigour mortis-seized limbs more quickly. Closer to home, in Ireland, wakes are held to display the body and queues of people come to pay their respects. In these examples, seeing is believing or at minimum the rituals enhance our understand of our place in the cycle; and it encourages a sense of purpose to help us grieve in meaningful ways.
‘Doulas want to bring death back into the community,’ says Emma, ‘we want to get to a point where people have basic knowledge around death.’
Community seems ultimately the key to unlocking our peace with the end. There is a hunger for open spaces for process and grief – you need only to look at the success of Death Café, which, since starting in an East London basement in 2011, has seen 10,000 events take place in 85 countries.
‘My late son, John, had the idea of Death Café because of his spiritual beliefs,’ says Susan Barsky Reid, his mother and co-founder. ‘He was a devout Buddhist, and so examined death and dying daily. I think he thought it would be helpful for people because there is so much death denial around.’
Indeed, From Here To Eternity concludes that the key to a calmer approach to the end comes as a collective. ‘Death avoidance,’ Caitlin explains, ‘is not an individual failing, but rather a cultural one. Facing death is not for the faint-hearted; it is far too challenging to expect that each citizen will do so on his or her own.’ And Susan points to joy in this shared challenge. ‘My first experience of a death café was life affirming; people laughed a lot and it was very fun. There was such a feeling of intimacy that one got from being with a group of strangers for an hour and a half.’
And then there’s that final link: nature. ‘One of the reasons I’ve been set up to be comfortable with death is because of nature,’ says Emma, ‘because all of nature is constant life and death, and in fact the things we think are most beautiful in nature ultimately tend to be death – like the autumn leaves falling from trees. All of the things we appreciate in nature are only possible because of that cycle from life to death, and I think the more time you spend being really present in nature, the more you feel like part of it, and that normalises being part of the cycle.’
What To Do Next
Read… Dr Kathryn Mannix’s palliative care memoir, With the End In Mind.
Attend… A local death café – they take place all over the country (deathcafe.com).
Consider… How you might like to be buried – and talk about it with loved ones – even if you think it’s a while off!
Recently I was asked this question at a recent death cafe. This young professional had found himself at a loss for words at the bedside of his friend who was dying an early death due to a chronic illness. This is actually a very common conundrum for most people but especially men who have been taught that revealing their emotion and being openly vulnerable is not only not masculine or professional. This affects us all because its now often socially unacceptable to acknowledge death is inevitable to a dying person.
A 2020 article on Psychology Today by Jade Wu PH.D, she states there are multiple reasons why we fear death. These reasons range from our personal physical health, age and religious devotion. I strongly recommend this article as some of the study results are not what you would expect. Our inability to relate to someone who is dying is directly related to how we relate to death ourselves.
Religious beliefs referred to being raised from the dead in a perfect body at the return of Christ can actually embed the thought that being dead is a less than perfect state. Others believe that if you profess your belief at least once on your deathbed, no matter what your life was like, you will be accepted into the pearly gates. While others don’t even believe in the existence of the soul and that when we die we rot like a log, the end.
There is no irrefutable evidence that can prove a part of us will continue to exist after death. Yet there are near death experiences, past life experiences, paranormal evidence and a long history of metaphysical experiences which support the continued existence of self-awareness; which when viewed as a body of work, has convinced me personally. I personally have investigated a good number of hauntings to feel completely comfortable stating that disembodied spirits (and entities) are absolutely real and interact with us often.
I have had multiple experiences of being with people as they pass. The practice of working with dying people, like most exposure therapy eases the fear of the unknown realm of the Dead. This too changes a person’s perspective. The only way to help others with death is to choose to wrestle with that shadow yourself. As I’ve stated probably in EVERY article, tomorrow is not promised; therefore, by not preparing yourself for these situations you may loose a valuable opportunity.
Trigger warning: I think one of the biggest fears, is not that of death directly, but that by acknowledging death can be imminent, it may cause a person to lose the will to live. This can be internalized by grieving individuals as having accidentally caused someone’s death and actually they are beating themselves up as having inspired a suicide. Suicide is a whole Pandora’s box which I previously wrote an article on The Right to Die and Death With Dignity (physician assisted suicide) movement.
Allow me to state that a person who is having serious health issues is not the same as a person who is actively dying, particularly in elderly patients. The phrase “active dying” refers to the fact that the doctors have done all they can and death is imminent in hours to weeks.
This is not the same as a Hospice level diagnosis. Technically one can qualify for Hospice if the doctor’s diagnoses is that death is likely to occur within 6 months. However, I often see in my local area, that by the time someone is given that diagnosis, they are actually only weeks away from death. This can be particularly confusing for me personally because I know they dont want to offer hospice services for people who may go on living for years. Part A of Medicare pays for hospice care at first for six months. After that six months an unlimited number of 60-day periods becomes available, if you are still considered terminally ill. In other words, hospice care is available in increments of 60 days for an indefinite period of time.
Let us consider several possible scenarios and options of action:
What if the dying person is at home and on hospice? These are really wonderful situations that are the most comfortable. Often the patient has some clarity and is aware. Depending on medication levels, there is a good chance you can have a nearly normal ability to converse, even with the elephant in the room.
What can you do?
First and foremost, treat your friend as you always have. Joke with them and chat about your usual things, just be comfortable. Nothing is worse than making the situation about you and your inability to deal with the situation. Focus on your friend/loved one.
Let’s address the elephant in the room! Gauge the awareness of your friend by inquiring what they know about their diagnosis and what the expected outcome may be.
Ask how they feel about that diagnosis and the likely outcome.
Ask if they feel prepared to face that and how you could help them feel more at peace with it.
This is often where people will be flippant and dismissive. This is where they are trying to be polite and allow you (and themselves) an out rather than go where things can be intensely emotional. All you need to do is to communicate that you are there to support them and that you can LISTEN. No one is expecting you to fix it or have answers.
Address the situation as if they are going on a trip; it is actually the ultimate trip. This can even involve into an easy way to communicate and give structure to the unknown aspects of leaving.
Details are important. Talk about your favorite memories with them. Skinny dipping, coffee in the morning, that trip to Vegas. Go for laughter!
It doesn’t have to profound. Be sure to tell them how important they are to you and what you garnered from having them in your life. Even if its that they made the best pancakes in the world, that is important!
Words can fail, but your actions will express all that needs to be said. Don’t be afraid to show your tears… this is pain leaving the body. The harder you push emotional pain away the more painful it feels and the harder and longer your grief will be. It’s ok to break down, sob and hug them. YOU both will get more out of that than you can imagine! BE VULNERABLE. Can you imagine how valuable you are making that person feel. And it allows them the opportunity to comfort you! WHAT A GIFT!
Perhaps you’ve come to visit with a person is in and out of consciousness or clarity. People in a facility/hospital setting are often on a great deal of pain medication or dementia and it can be a struggle to have a conversation or they may completely unable to communicate.
What you can do:
Hold their hand and touch them gently. Remember that scents, and touches may be intensified so be gentle, but please do it. Loving, gentle touch is often missing from the end-of-life because its all medically centered. You can also brush their hair, wash their face, arms, hands or feet. Apply lotion and lip balm. (I’ve never understood why cosmetic cleanliness seems to take a backseat to medical care when dying. If I’m dying, please brush my hair, wash my face, and (Scout) please do a bit of light makeup! I need to feel presentable to receive guests and address such a momentous occasion.)
Don’t be afraid to lie next to them or cradle them in your arms.
Talk out loud to them, they can hear you. Hearing is the last sense that is lost. Your voice may be like part of a dream in their experience, so be aware of what you are putting into their mind.
Be honest with them. If you are their heath care agent/proxy, their closest living relative, or the acting death doula, please tell them they are dying. Tell them the diagnosis and what is happening to them.
Tell them where they are and who is in the room. Tell the who the aid/nurse is and what procedure they are doing. People are not packages and nursing staff can get caught up in doing an job. Even doctors no longer speak to those who are unconscious. They are still alive and likely aware!
Don’t talk about the will, the funeral or the burial! This is business and in reality, it only affects the living… not the dying person! Be aware and considerate of what is important to the dying person.
Everything listed above still applies.
Consider talking about their closest loved ones who have already died. I am a firm believer that the dead come to greet/gather up those who are dying. Sometimes they will tell you who is coming to gather them. Ask the nurses if they have noticed her talking about anyone that might be passed; this will not be a strange question to them, trust me. Its likely whomever they loved the most during their life, often its a parent, spouse, sibling or best friend. You can help them reconnect with them by assuring them that “Uncle John is here to be with you.”
Take time to think about these things before you go into their room. You can have a set of favorite memories ready as well as a possible discussion about who has already passed that will be there to greet them. Don’t be afraid to look like a fool, to be emotional or to be out of control. Death is the ultimate revealer of what is actually important.
Researchers from Rutgers Health have analyzed millions of Medicare records, uncovering vital insights into the end-of-life care trajectories of older Americans.
“Older adults may require help managing their chronic conditions, taking medications, or performing personal care activities, such as eating, bathing, and dressing,” wrote the study authors.
“The ability of patients, caregivers, and communities to support aging in place is impacted by advanced illness and the presence of multiple chronic conditions, including Alzheimer’s disease and other dementias.”
Improving end-of-life care
The study presents a novel approach to improving end-of-life care by mapping out the distinct paths followed by individuals in their final years.
“Identifying which paths people actually take is a necessary precursor to identifying which factors send different people down different paths and designing interventions that send more people down whatever path is right for them,” said study co-author Olga Jarrín.
Focus of the study
The research team evaluated the final three years of clinical records from a randomly selected group of Medicare beneficiaries who died in 2018.
The analysis focused on the amount and location of personal care each patient received, leading to the identification of three major care clusters: home, skilled home care, and institutional care.
Key findings
The researchers found that 59 percent of patients predominantly spent their last three years at home, relying on assistance from friends and family for daily tasks, with professional care being minimal until their final year.
Another 27 percent of patients were part of the “skilled home care” cluster, where nurses and other skilled professionals supplemented the care provided by family and friends within the patient’s home.
The remaining 14 percent fell into the “institutional care” cluster, spending most of their last years in hospitals or nursing homes, where they received comprehensive professional care.
Additional insights
The researchers used a group-based trajectory modeling approach to correlate these care trajectories with sociodemographic and health-related metrics. They found notable differences among the clusters, with patients in the skilled home care and institutional care clusters more likely to be female, enrolled in Medicaid, or suffering from dementia.
Geographic variations were also evident, with extensive use of skilled home care more prevalent in Southern states and institutional care more common in the Midwest.
Broader implications
Haiqun Lin, lead author of the study and a professor of Biostatistics at Rutgers, highlighted the broader implications of the findings.
“Our study not only identifies different patterns of care but also sheds light on the clinical and policy factors that dictate where and when patients receive care,” said Lin.
“Understanding these patterns is crucial for advance care planning, and ultimately, for achieving the triple aim of improving care experiences, reducing care costs, and improving care quality.”
Supportive interventions
The research lays the foundation for future studies aimed at identifying key factors that influence individual end-of-life care paths and developing interventions to support people in following their preferred trajectory.
“Most people want to stay at home with minimal professional help,” said Jarrín. “However, the goal for a significant minority of people is to avoid being a burden to family and friends, and such people tend to want professional care.”
“Our goal isn’t forcing people toward any particular type of care. It’s helping them to plan for and get the care that’s right for them.”
In 2015, Isdale, then 31, was diagnosed with stage four bowel cancer and given 18 months to live. Despite a period of remission and 170 rounds of chemotherapy, the disease has since spread to her lymph nodes.
I always thought, “I’ll get my career sorted, then we’ll get married, have children, go travelling.” And then cancer happened. You grieve for your future self. Your imagined children and your career. If I died tomorrow, what I’d be saying on my deathbed is I regret not spending enough time with my family. So that’s what I focus on.
I have a “Yolo list” of things I want to experience in life and my husband and family work very hard to ensure we do as many of them as possible together. They’ve taken me snorkelling in the Maldives, hot-air ballooning over Cappadocia and snowmobiling in Iceland. We’ve stayed in a cave hotel, seen the pyramids, the Colosseum, and flown in a helicopter over New York. We’ve hand-fed tigers, taken the Rocky Mountaineer train, been paragliding and seen the tulip fields of Holland.
My life is most likely going to be short, so on my good days, when I’m well enough, I really live. I go out and do anything I want: for a nice meal, to the theatre, cinema or an escape room.
My illness has changed the way I prioritise things. Although I loved my career as a doctor, it often meant long hours, missing out on Christmases and birthdays, exams, stress. Giving that up is a big sacrifice, but it’s one I’m willing to make to gain more time with my loved ones. It is ironic that it took being told I was dying before I really started living.
Anything that doesn’t make my heart sing is less important to me these days. I don’t sweat the small stuff any more. Life is too short for cleaning. The laundry pile will wait. And if I want to eat a piece of cake, I damn well do.
‘Don’t waste energy fighting’
Michèle Bowley, 57, Basel-Stadt, Switzerland
After Bowley found a lump in her armpit in summer 2020, a biopsy revealed breast cancer. The disease spread to her lungs, liver and bones, and in late 2021 she was given a prognosis of three to six months.
Accept yourself and your situation. Don’t waste energy fighting. The most important things in life are other people. Pay attention to your needs and do what makes you happy. Do something creative, learn something new, get involved in something that matters to you. Enjoy your life to the last breath.
I have no regrets. I’ve always done what was important to me and have reached my full potential regardless of what others expected or thought of me. I’ve had a fulfilled life; I’m ready to go.
‘Having a sense of purpose brings joy’
Mark Edmondson, 41, Sussex, England
Mark Edmondson: ‘I’ve never been happier.’
In 2017, Edmondson was diagnosed with colon cancer. After doctors also discovered more than 30 tumours in his liver, he was given a year to live. He has since undergone more than 140 rounds of chemotherapy and over 30 operations.
Prior to getting cancer, I had ambitions of becoming a managing director or CEO; I wanted to achieve something in my career. Within hours of the diagnosis, that disappeared. I don’t care for work any more, but I believe strongly in having a sense of purpose, something to motivate and distract you, and bring joy and satisfaction. I get that from the business I started: a support service for anyone facing adversity. If someone had said, two years into my treatment, “Do you feel able to support other people through their diagnosis?”, I would have said no way. But as time has passed I do, and I’ve spoken to more than 100 people. I love coaching and mentoring. I’ve never been happier.
I lead every session with this quote and loop back to it at the end: “It’s not what happens to us, but how we react that defines who we are.” So how do you want to be defined? Cancer or no cancer, that question should dictate how you live.
I’m a big believer in being as honest and open as possible. Men are notoriously bad at sharing our feelings, but I want to change that for my boys.
We get pushed along in this world by consumerism, but it doesn’t matter what car or house we have, as long as we’re comfortable. What really matters is love, relationships, kindness, caring for people, being around people. I want to create the best relationships I can, and live the happiest life I can, because I no longer know what my timeframe is.
‘It’s not about the quantity of time I’ve got, it’s the quality’
Chris Johnson, 44, Tyne and Wear, England
In 2019, Johnson was diagnosed with a rare gastrointestinal cancer. In 2020, hundreds of small tumours found on his liver led to a prognosis of two to five years.
I’ve got limited time, so I’d rather be doing things with family and friends, and having a positive impact on the world around me. I’m not in the office wearing a shirt and tie any more. In 2021 I was running marathons, and last year I completed the National Three Peaks Challenge.
Fundraising has been the main driver but exercise also helps with the side-effects of my treatment, though as that progresses, it’s becoming harder to do long distances.
I still care about politics, the climate and my football team, but I don’t get stressed about them any more. It’s not about the quantity of time I’ve got it, it’s the quality.
People talk about beating cancer or winning. I’m never going to beat cancer, it’s not an option. At some point it will kill me. But until then, how I live my life is my version of winning.
‘Cancer sorts out what really matters’
Siobhan O’Sullivan, 49, New South Wales, Australia
After feeling unwell for two weeks, O’Sullivan was diagnosed with ovarian cancer in August 2020. It had already spread beyond her ovaries, and did not respond to chemotherapy.
I have a lot of colleagues and friends around the world, and people have mailed me gifts from every corner of the globe. An English friend flew out to see me for three days; he spent longer in the air than with me. This is the kind of generosity of spirit that people have shown me and it’s been very moving.
Cancer has been extremely effective in sorting out what really matters and what doesn’t. I was always a very busy person, and if I was meeting someone for lunch at 1pm and they strolled in at 1.20, I might have been irritated. Now I’ve realised none of that matters. I would love to have had this insight and these connections without having to go through this cancer bullshit. But I don’t think there’s a shortcut to it.
Siobhan O’Sullivan died on 17 June 2023.
‘Sharing your feelings helps’
Harry Soko, 59, Salima, Malawi
Harry Soko: ‘When I’m alone, I wonder why I got it.’
In July 2020 Soko noticed a pain in his right thigh. A year later he was diagnosed with skin cancer, which will significantly shorten his life: a 2014 study at the care centre where he is being treated found only 5% of patients with the condition live more than five years.
Normally we say, “If you are suffering from cancer, the immediate result is death.” So my family accepted it. The community accepted it. When I’m alone or sleeping, it comes to me: “Why am I suffering from cancer? How did I get it?” It takes time to accept. But if you share your feelings with others, you become free. You have no worries.
‘My illness stripped me of my fears’
Juan Reyes, 56, Texas, US
Reyes was diagnosed with ALS in 2015; he’d had symptoms for two years, and the average survival time is three. In the next six months he became a wheelchair user; he has since lost the use of his hands.
I’m very much an introvert, quiet and reserved, and afraid of public speaking. Having to live with ALS has stripped me of many of my fears. I’ve always had a very silly streak with close friends and family, and now I use that as a power, to entertain and educate through comedy.
The first time I did standup was in October 2019, at a fundraiser for ALS I’d organised at a local comedy club. I didn’t intend to do it, but as I was opening the evening, I took a chance. Afterwards I felt incredibly alive.
I also went skydiving six months after diagnosis. The first step out of the aircraft took my breath away. The rush of air was deafening, then I was suspended above the landscape. The serene silence, interrupted by the rustling of the canopy, was life-altering. I’m so glad I experienced this. I’m dying, so what is there to fear?
‘Stop worrying about having a good job or needing a big house’
Caroline Richards, 44, Bridgend, Wales
Her son was 16 months old when, in 2014, a swelling in Richards’s stomach was diagnosed as bowel cancer. She was told that, with successful chemotherapy, she would probably live for two years.
These past nine years have been really good, probably better than if I hadn’t had cancer. Different things became a priority: spending time together rather than worrying about having a good job or thinking you need a big house.
In a way I feel lucky – I could have died when my son was three or four. I feel as if I’m living on borrowed time. But he knows me. He’ll remember me.
‘Find gratitude’
Tyra Wilkinson, 50, Ontario, Canada
A family history of breast cancer meant that when Wilkinson was diagnosed with the disease in 2015, she had already made plans for a mastectomy. Seven years later, the cancer had returned and spread to her spine, making it incurable.
My husband and I had plans for when our kids were grown. We have always said we’d be the most fit grandparents, playing with our grandkids on the ground. Even if I’m alive I won’t be able to be that grandparent, because I’m just not capable of doing that stuff now.
Find the gratitude for what you have because it can always – and will always – get worse. Be grateful for all the things that are going your way right now.
‘Go to the parties. Stay out late’
Amanda Nicole Tam, 23, Quebec, Canada
Amanda Tam: ‘Don’t hold back.’
After noticing symptoms in January 2021, Tam was diagnosed with amyotrophic lateral sclerosis (ALS) that October – five days before her 21st birthday.
I wish I had gone out more with my friends. I wish I had gone to parties and stayed out late. Living life free-spirited is something I feel I missed out on, and I regret that I didn’t take advantage of that when I was younger. Life is short and you should live it how you want, regardless of what people think. Don’t hold back. Say what you want to say and do what you want to do.
‘Have a goal. Don’t accept defeat’
Mark Hughes, 62, Essex, England
More than 20 years ago, pneumonia led to the discovery of a tumour in Hughes’s lung. Surgery was successful, but the cancer had spread to his lymph nodes. In 2010, a rare form of the disease, which is now terminal, was found in his bones.
It’s about having a goal, a purpose, setting your sights somewhere. I won’t be beaten down or accept defeat. The only way is forward, and there’s always a finishing post I’m aiming for. If you get knocked down, get back up, brush yourself down and go again. That’s what keeps me going.
‘You are enough; you make a difference’
Chanel Hobbs, 53, Virginia, US
At 37, Hobbs found herself unable to run without falling; she was diagnosed with ALS and given a life expectancy of up to five years. She is now dependent on a ventilator and feeding tube.
Before my diagnosis, I was very independent. I prided myself on doing things on my own. But I’ve learned that others really want to assist, and it brings them joy knowing they can make a difference, however small.
I always used to plan every single facet of my life. I wish I had been more spontaneous and done things when they crossed my mind. For example, looking out the window and wanting to go for a walk, but doing housework instead. How I yearn for a walk today. Now I give myself grace. I have learned not to compare myself with others. Find what makes you feel meaningful. Remember: you are enough, you are human, and you make a difference.
‘No matter how you feel, get up, get dressed and get out’
Simon Penwright, 52, Buckinghamshire, England
In the early hours of 24 January 2023, Penwright was woken by an unpleasant taste and smell. Doctors discovered three brain tumours, one covering half of his brain. He was diagnosed with an aggressive form of glioblastoma and given less than 12 months to live.
It would be so easy to wake up in the morning and just lie in bed. I’m not a gym person, but when I’ve done a bit of exercise, I feel fantastic. No matter how you feel, get up, get dressed and get out.
If you’re OK one minute, then have a cardiac arrest and you’re gone the next, your options are taken away. So I guess I’m grateful that I can get organised and make the most of my relationships. I’d take this route every time.
‘I’ve stopped caring what others think’
Sukhy Bahia, 39, London, England
Sukhy Bahia: ‘I want my kids to know milestones are bullshit.’
Diagnosed with primary breast cancer in 2019, Bahia was given the all-clear by her oncologist in March 2022. Five months later, she discovered the disease had spread to her bones and her liver.
I’m a single mum. It’s heartbreaking because you think you’ll be around for your kids for a really long time. My daughter is nine and my son is six, and I’m completely transparent with them about my health. I’m hoping to leave things for when I’m not here – birthday, graduation, wedding, new home, new baby cards, and a cookbook of all their favourite recipes. I’m also planning video blogs, giving advice on things they may not be comfortable asking anyone else, like consent and puberty.
I want them to know that they never have to impress anyone or try to fit in, and that milestones are bullshit. Nothing needs to be done by a certain age or time; you can always change what you want to do in life.
I’ve stopped caring what other people think of me. From my teens, I always wanted a full sleeve tattoo. Last year I decided to start one with the birth flowers of my children, to show how much they mean to me.
My kids love them; my parents aren’t over the moon, but they accept there are worse things I could be doing with my life.
‘Never create a new regret’
Kevin Webber, 58, Surrey, England
On holiday in 2014, Webber noticed he was visiting the bathroom a lot. Soon after he was diagnosed with prostate cancer and given four years to live.
I don’t have many regrets. Maybe I wish I’d taken my kids to school more. When they grow up, you realise that meeting you had at work, you could have probably moved it back an hour.
In that moment, when you know it’s over, I don’t want to look back with any remorse. You can’t change yesterday. Never creating a new regret is an important way to live your life.
I have three missions every day. Enjoy myself, but never at the expense of someone else. Try to do some good – and that doesn’t have to be raising 10 grand for charity; it can be smiling or giving someone a seat on the bus. And make the best memories, not just for you on your deathbed, so you can lie there and go, “Oh, that was great when I did that”, but for everyone else.
‘I realised what I really wanted to do’
Sophie Umhofer, 42, Warwickshire, England
In 2018, after 10 months of tests for conditions such as IBS and Crohn’s disease, Umhofer was diagnosed with bowel cancer, which had spread to other parts of her body. She was told she could live for three more years.
Initially I felt as if I had to cram the rest of my life into the couple of years I’d been given. I’ve written birthday cards and letters for my kids until they’re 21, preparing them for me not being here.
Obviously I wish it hadn’t been cancer that caused this, but I’ve changed so many things about myself. Before my diagnosis I would get very stressed out. I had this perfectionism when my kids were young that they had to have routines. I spent so much time being worried about things I didn’t need to do. And once I became a mum, I sort of gave up what I wanted to do.
I regret that I didn’t take action for myself a bit more. But this diagnosis meant that all of a sudden, I realised what I really wanted to do. When I was going through chemo I was trying to find things I could do to keep myself entertained, and I started watching motorsport. When I got a bit better I actually entered a competition and got through to the finals. I ended up getting a job in motorsport and now work full-time looking after a team. I wish everybody could see how much better life can be if we change the way we think.
‘Leave the damn house’
Arabella Proffer, 45, Ohio, US
Arabella Proffer: ‘You never know what’s going to happen.’
In 2010, Proffer was diagnosed with myxoid sarcoma. Ten years later, the rare form of cancer was found to have spread to her spine, lungs, kidney and abdomen. Told to get her affairs in order, she now plans her life two months at a time.
A year before I was first diagnosed, my husband had joked, “Hey, why don’t we cash out our retirement and follow Motörhead and the Damned on tour through Europe?” When I got the diagnosis, I thought, “We should have done that.”
My mantra is to leave the damn house, because you never know what’s going to happen if you do. No interesting story ever started with, “I went to bed at 9pm on a Tuesday.”
‘Just buy it. Do it. Go and get it’
James Smith, 39, Hampshire, England
In 2019, Smith noticed a twitch, then a weakness in his left arm. Two years later he was diagnosed with motor neurone disease (MND).
When I was told I’ve probably got only a few years to live, my wife was pregnant with our youngest. In the back of your mind you’re thinking, “Am I going to see them get married? Have kids?”
I did turn to alcohol, but it wasn’t doing me any favours; I was using it to block out what I didn’t want to think about, so I nipped it in the bud. Now I’ve come to terms with what I’ve got and I just take every day as it comes. I focus on what I can do, not what I can’t do. I had to give up my career as a barber, but I’ve found a new passion in creating my podcast, which shares my story and those of others to raise awareness of MND. Talking to others and relating to people going through the same situations as me is like therapy.
It’s horrible to say it takes a terminal illness to actually live life, but when I hear people going, “I’d love to do that”, I realise getting diagnosed has put a different perspective on life. I used to think, “I won’t buy that because I don’t know what’s around the corner.” Now it’s just buy it, just do it. If you want something and can afford it, go and get it. If you want to do something and you’ve got the means, go and do it.
‘I soon realised what I liked about life’
Ali Travis, 34, London, England
At 32, Travis began experiencing severe headaches. After an MRI revealed a mass the size of an orange on his brain, he was told he had a glioblastoma and his life expectancy was 12 to 14 months.
Last year was the best year I’ve had because in a very, very short space of time, I realised what I liked about life. It’s the closeness of relationships, old friendships. And, for me, being a geek.
If I’d been hit by a bus, I’d have been a stressed guy with a load of problems who couldn’t see past the end of his nose. So, despite all the surgeries, the constant chemotherapy, the radiotherapy, I would choose this route.
‘Look after yourself first’
Sonja Crosby, 55, Ontario, Canada
Sonja Crosby: ‘Cancer focused me.’
In 2012, doctors discovered a tumour on Crosby’s left kidney. She was diagnosed with a rare form of cancer, and most organs were removed from her left side. In 2017 she was given six months to live.
Cancer focused me more precisely than anything else I can think of. When my doctor told me I had a few months left, I said, “Can we put that off another six months? I have this big project at work I want to finish.” He said, “No, you have to be your priority now, not work.”
You can’t manage all aspects of your life. I’ve realised it’s not selfish to look after yourself first, that your friends and family will do a lot more if they know you’re open to receiving help.
‘My favourite saying is: it is what it is’
Rob Jones, 69, Merseyside, England
In October 2012, Jones was told he had bowel cancerthat had spread to his liver. He had 27 rounds of chemotherapy.
I’m not a bucket list person; I don’t go through life saying, “I wish I’d done that.” My wife says I’m one of the worst people in the world to buy anything for, because if I want it, I get it. It’s the same in life, if we can afford it. But I’ve never had dreams of doing a world cruise or a flight to America. I’m a home bird really.
I read once that cancer victims are lucky in life, because they generally have a timeframe of when they’re going to die. They can put their life in order, say goodbye to loved ones, ignore all the people they’ve tolerated to be polite. Whereas people who have a massive heart attack and die on the spot, they don’t have that opportunity. I sort of get that now. But I’m not allowed to talk as if the end of the world is nigh, because everybody thinks I’m invincible. Of course, none of us are.
My favourite saying is: it is what it is. If we had the choice, we’d all live a long, happy life. But when would we choose to die? There isn’t a convenient time.
Rob Jones died on 28 July 2023.
‘What’s the point of earning, earning, earning, if there’s no joy in your life?’
Jules Fielder, 39, East Sussex, England
In November 2021, Fielder was diagnosed with double lung cancer, then shortly after told the disease had spread to her spine and both sides of her pelvis.
You get caught up in that world of work: pay your bills, eat dinner, sleep, repeat. But now I truly feel very different about money. What’s the point of earning, earning, earning if there’s no joy in your life? When I watch really power-driven people who want more and more, I want to tell them it’s the small things in life that are beautiful. We live in quite a toxic world, but it’s your choice what you expose yourself to. Iget up, I walk my dog, I listen to every single bird that chirps. I’m grateful for that.
‘Be authentically you’
Mike Sumner, 40, Yorkshire, England
Mike Sumner: ‘There are always positives.’
While on TV show First Dates in March 2020, Sumner noticed a loss of movement in his foot. Eight months later he was diagnosed with motor neurone disease. He has since married his date, Zoe.
I don’t waste time now. Life is too short to be doing any shit you don’t want to. Concentrate on making the memories you want and never say no, never make excuses. Do things you’ve always wanted to do. We went to Los Angeles to see the Back to the Future set at Universal Studios. I’ve been meaning to go for years. It was our little pilgrimage.
In the short term I keep positive by thinking about weekends, because we often go away and do something fun – next weekend we are going to a classic car show. In the longer term, I look forward to our next holiday – we always go to Orlando. When I feel the warm air on my skin, and hear the crickets of an evening, it lifts me emotionally.
Day-to-day I look forward to Zoe coming home from work so I can give her a cuddle. I look at my model car collection and think about the happy memories I have of driving. When I feel a bit low, I treat myself to something nice to eat – pizza, a burger or a battered haddock – while I can still enjoy food.
You have to be authentically you. But try not to moan because there’s always someone worse off than you. Focus on the positives; there are always some. For example, I’m married to Zoe.
‘Keep things simple’
Alec Steele, 82, Angus, Scotland
In 2020, while in hospital for a routine checkup, Steele collapsed. Tests revealed idiopathic pulmonary fibrosis – which causes scarring on the lungs and leads to difficulty breathing – and he was given a prognosis of one to five years. He now requires a 24-hour oxygen supply.
The first six months after diagnosis were dreadful. I was trying to get all my affairs in order, and I told my medical team I was determined to have one last game of cricket. The physiotherapist and I worked as hard as we could, and in late April 2021 I got my game, wicketkeeping with oxygen strapped to my back. A photographer took a photo and put it on the internet. It is now displayed at the Oval, next to Ben Stokes’s photo. Last year I had 16 games, which has just been wonderful.
I’ve realised I have to keep things as simple as possible. I soon learned that negative thoughts were destructive and I trained my mind to work out those you can do something about and those you can’t. If it’s the latter, discard them. If you can do something, work out what and get started to tackle the problem.
‘Switch every negative to a positive’
Kate Enell, 31, Merseyside, England
In July 2021, less than a month after finding a lump in her breast, Enell, then 28, was diagnosed with stage four breast cancer. It had spread to her liver and bones, and has since moved to her brain.
For two days after being diagnosed I locked myself in the bedroom; I didn’t see or speak to anyone. But on the third day I thought, “Wait – if I’ve only got a short timescale, do I really want my little boy to see me miserable?” Now I just try to do as much as I can while I’m here. I’m quite good at switching my brain now. Say I get upset about not being able to have more children, I switch it round and think, “Well, I am a mum.” Whenever there’s a negative, I try to switch it and keep positive.
I feel like I’ve had some of my best times in the first few years of my diagnosis, because it makes you home in on what’s important. Everybody around me has made more of an effort, we’ve done lots of family events. It’s made us realise that what’s important is spending quality time together.
‘Success, status, reputation – they are not important’
Ian Flatt, 58, Yorkshire, England
Ian Flatt: ‘What’s important is to find joy every day.’
Flatt had always led a very active life, but in April 2018 he began struggling with severe fatigue. By the following March he had been diagnosed with MND and he has since lost the use of his legs.
I can categorically say that the things I valued and felt were important are not important. Success, status, reputation – they pay the mortgage, but I think I lost myself a little bit in all that. I’m much more emotional and empathic now. I’ve always been a reasonably popular guy, I have friends that go back 30-odd years, but I’ve never had the depth of friendship that I have now. Or maybe I had it and didn’t appreciate it.
What’s important now, every day, is to find some joy. I look out at the birds, the trees – I’ve a favourite one I can see out of my bedroom window. Through being a bit reckless, I lost the use of my legs sooner than I would have. I remember accepting that and thinking, “OK, I’m not going to walk, so let’s go out in the tangerine dream machine [his off-road wheelchair].” We went out, had a pint of Guinness, and now my memory of that day is a joyful one.
‘Your energy is valuable’
Daniel Nicewonger, 55, Pennsylvania, US
In May 2016, after he started struggling to take a full breath, Nicewonger was told he had colon cancerthat had spread to his liver. The prognosis was two years.
It took this to clarify what’s really important. You get very good at saying, “No, I choose not to invest energy and time in this, because my energy and my time is just that much more valuable.” If I could have understood that at 30, I’d have moved through life in a totally different way. But that’s unrealistic. Wisdom is wasted on the young.
‘Don’t mess around. Be direct’
Angus Pratt, 65, British Columbia, Canada
Angus Pratt: ‘I discovered self-confidence.’
A lump on Pratt’s chest in 2018 led to the discovery of breast and lung cancer. He was given a 5% chance of living to 2023.
I had my diagnosis in May, my wife was diagnosed with pancreatic cancer at the start of October, and by the middle of November she was dead. I had to ask myself the big question: am I leaving behind what I want to leave behind?
I’ve taken on writing assignments, helping scientists translate research into patient-friendly language. Recently I was asked to contribute a painting to an auction, and I was surprised people would pay for my art. One of my joys is a local poetry group that meets in the park. Sometimes we have an open mic. I guess I’m trying to say I’m a poet, too.
I’ve discovered self-confidence. I really don’t care what people think about me any more; it’s not important because I’m going to die. I don’t have time to mess around, so I’m going to be direct. That’s stood me in good stead.
‘I should have trusted myself more’
Henriette van den Broek, 63, Gelderland, the Netherlands
When Van den Brook was diagnosed with breast cancer in 2008, the disease had already spread to her lymph nodes. She was well for a number of years, but in 2020 she discovered that the cancer had spread to her stomach and was terminal.
Every day when I work as a nurse, it feels like a party for me. I realise how meaningful I can still be to other sick people. I enjoy the little things more, dare to have the difficult conversations.
It’s a pity I’m only finding that out now. I feel like I need to catch up on this in a hurry and get the most out of life. I’m discovering the things I’m good at, but I’d have liked to discover them sooner. I should have trusted myself a lot more and been less insecure. I only have the guts now.
‘Treat every smile like it’s your last’
Ricky Marques, 42, St Helier, Jersey
In summer 2022, Marques began to lose weight. In November, a CT scan led to a diagnosis of lung cancer. The disease, which has spread to his bones and lymph nodes, was so advanced that he was given a prognosis of weeks or months.
When I was younger I had a son, and when he was eight, he died in a car accident. My life collapsed and I thought, “How am I going to recover?” When I was diagnosed with terminal cancer I thought, “What else am I going to get? Didn’t I already have my share of bad luck? Don’t I deserve to live?”
The lesson I’ve learned is every time someone smiles at you – a little touch, a little gesture – look at it like it’s the last one because, guess what? Maybe it is.
An online survey reveals that 79% of Canadians support the use of psilocybin to treat existential distress in patients suffering from an incurable disease. While the production, sale and possession of this active ingredient from hallucinogenic mushrooms is currently prohibited in Canada, a unique access program allows people to obtain an exemption for medical or scientific reasons.
“Studies have already shown that psilocybin, combined with psychotherapy, produces rapid, robust and lasting anxiolytic and antidepressant effects in patients who have advanced cancer,” states lead researcher Michel Dorval, professor at the Université Laval’s Faculty of Pharmacy and researcher at the CHU de Québec-Université Laval Research Center.
“Our results indicate that the social acceptability of this intervention is high in the Canadian population,” he comments. “If we consider only Québec respondents, the acceptability rate is similar to the national average.”
The survey included 1,000 respondents from Québec and 1,800 from Ontario, Alberta and British Columbia.
Psilocybin in healthcare
The study published in Palliative Medicine specifically focused on the social acceptability of the intervention when delivered by healthcare professionals.
While nearly four out of five respondents found psilocybin-assisted therapy a reasonable medical choice for a patient suffering from existential distress at the end-of-life, 84.8% agreed that the public health system should cover the costs of the intervention. Moreover, 63.3% would welcome the legalization of the substance for medical purposes.
In Canada, doctors can apply for the exemption of psilocybin on behalf of their patients if psychotherapy, antidepressants or anxiolytics have failed or if a patient’s condition requires urgent intervention.
“This substance can bring about a profound awareness that leads the patient to view existence from a different perspective. Treatment with psilocybin, combined with psychotherapy, can produce relief for up to six months,” underscores Dorval.
The researchers hope that the survey’s findings may contribute to improving access to therapy in palliative and end-of-life care settings and mobilizing resources.
Support drivers
Survey respondents exposed to palliative care had a higher support rating for psilocybin.
“Having been close to loved ones at the end of life, or having witnessed their distress, could explain this openness to new approaches designed to help people at this stage of their life,” he suggests.
In addition, support was higher among people who previously used psilocybin.
Dorval explains: “There are still many prejudices against psychedelic substances. Familiarity with these substances probably helps better understand their true effects and therapeutic potential.”
Market and research developments
Psilocybin and other psychedelics are gaining popularity in mental health support for their effects on the brain, treatment-resistant depression and addiction.
Last year, a clinical trial on psilocybin treatment found it could clinically and significantly reduce depressive symptoms and functional disability without serious adverse events. Participants received the psychedelic combined with psychological support before, during and after dosing.
Earlier research revealed that psychedelics outperformed antidepressants, as psilocybin activates a different set of serotonin depressors instead of suppressing emotions — common effects of antidepressants.
There have also been several movements to legalize psychedelics for public use to move the “magic mushroom” into the mainstream market.
Meanwhile, the US Food and Drug Administration has issued guidance to the industry as the use of psychedelic drugs for medical conditions gains interest and popularity. The guidance supports the development of treatments based on psychedelics and opens the discussion on the use of the products in clinical trials.
At the end of every year in the past, I anxiously waited to crack open my new daily planner for the coming new year so I could jot down resolutions. I like a clean slate.
Every year those resolutions tumbled to the bottom of my to-list before I’d finished humming “Auld Lang Syne.” Things like, be more disciplined/stop procrastinating, tackle my TBR stack/try a digital sabbatical, and cut out sugar/lose ten pounds/no more than one dessert a day, topped the list year after year.
This year, I’m Googling phrases like “Is an advance directive the same as a living will?” “Where is assisted suicide legal?” “What drugs are used in assisted suicides?” When I type the last question into Google, the first thing that comes up is the number “988” and encouragement for me to reach out for support.
My arm felt heavy, the muscles rippled beneath the skin and my finger strokes on the keyboard weren’t landing as efficiently as they once had.
I don’t have a solid diagnosis yet. Instead, I have a plethora of odds and ends symptoms, disorders, dysregulation, immunodeficiencies and viruses after I contracted a nasty respiratory illness that lasted for seven weeks at the end of 2019 after a return trip to the Midwest to visit family for the holidays.
The Downward Spiral
The downward spiral started with an episode of super ventricular tachycardia a week or so after I was “on the mend.” My resting heart rate hit 150 plus beats per minute which began a series of trips to the local emergency room, tests and procedures. That illness triggered a marked decline of my health and was likely the beginning of this chosen end that I’m facing now.
But then, last March, three years after that first trip to the ER, I noticed weakness in my right forearm while I was working from home one afternoon. My arm felt heavy, the muscles rippled beneath the skin and my finger strokes on the keyboard weren’t landing as efficiently as they once had. Words were missing letters…Knoledge. Languge. Mariage. Muscles spasmed.
The next few months brought resting tremors, and trouble swallowing. My speech became sluggish in the evenings when I was most fatigued. I started to struggle with short-term memory, mixed up words in conversation, and it felt like words I used frequently had been stowed on shelves in my brain and I could no longer reach them.
I’m doing things like leaving the kitchen with the faucet running, burners on, and recently, I put a container of yogurt in the drawer with my Pyrex lids.
‘Maybe ALS’
In August, my rheumatologist referred me to a neurologist — my life inundated with ologists. Immunologist. Gastroenterologist. Rheumatologist. Neurologist. He suspected that rather than an autoimmune disease, a neuromuscular disorder was the root cause of many of my symptoms including the weakness, tremors and autonomic dysregulation which caused functions like heart rate, blood pressure and temperature to become unpredictable, and sometimes dangerous.
Now, after most physical exertions, like taking a mildly warm shower, my body temperature spikes to 102-104 degrees, my heart races to 130-150 plus beats per minute.
“Maybe ALS,” the rheumatologist said. Amyotrophic Lateral Sclerosis. A terminal diagnosis.
Thus far, ALS can’t be ruled out with certainty as a diagnosis, but it also hasn’t been confidently diagnosed at this point in the MRIs, EMGs and blood draws. I’m being referred to another neurologist for further evaluation. According to the ALS Therapy Development Institute, some patients initially receive a “suspected, possible, probable, or definite ALS” diagnosis as other disorders and diseases are ruled out.
I think in terms of quality of life, and regardless of which of those diagnoses the doctors land on, my decision to end my physical, cognitive and emotional suffering remains the same.
On paper, ALS is the worst-case scenario in terms of outcome with a life expectancy of two to five years depending on the progression of each individual patient. Best-case scenario, this myriad of symptoms, this failure of my fifty-two-year-old body, is that my faulty, gone-rogue immune system that has already attacked my other organs — lungs, liver and spleen — has started its assault on my brain causing inflammation and/or deterioration.
A Decision Made
This brain that I’ve filled with ten years of study in higher education, ideas for essays, books yet to be written, language, memories of my children, their children, my parents when we were all much younger — has been damaged. There is no way to know if there’s any hope of recovering what’s been lost. But now, I think in terms of quality of life, and regardless of which of those diagnoses the doctors land on, my decision to end my physical, cognitive and emotional suffering remains the same.
I haven’t officially told my family, many of those relationships are estranged/strained, and, even as a child, I oft communicated in writing. As a child, I asked my mother if she was mad at me on lined steno pages left on the kitchen table, asked her to check yes or no.
I’ve written letter after letter to my husband throughout our nearly-twenty-year marriage — in the beginning, letters of love and wanting, more recently, letters of request and reflection. I’m sorry you ended up with a sick wife.
I have expressed my frustration and fatigue with being sick for so long to some members of my family, said things like “This isn’t sustainable,” or “I’m not sure how much longer I can do this.” But they are of the mindset that I need to get out more, that I can somehow right the ship of my sick and fledgling body with positivity. Even my husband has talked to me about the power of “mind over matter.” Those are all different conversations.
On my worst days, I’m frequently utilizing my newly-purchased rollator after being humbled by several trips and a few falls.
Now, I have to try to take a short walk or do some sort of activity after every meal to help my stomach empty itself of its contents, lest the gastroparesis cause the food to stagnate and form a solid mass in my gut. On my worst days, I’m frequently utilizing my newly-purchased rollator after being humbled by several trips and a few falls. Some days, I struggle to feed myself and swallow food and drink, regardless of consistency.
While my brain and my body continue to weaken, I think about the trivial, everyday things like not being able to make and pour my own coffee, think about how my hands are no longer strong enough to hold one of my beloved coffee mugs that I’ve collected over the years from my children or from pottery-making friends.
I can no longer stand in the kitchen for extended periods while I make doughs and roll them into glazed and streusel-ed pastries or stir a pan of homemade hot fudge that I gift to friends and neighbors. I worry that my arms won’t hold my new granddaughter expected in the spring.
Leaning Into End-of-Life Plans
On a grander, more humiliating scale, I’ve wet myself more than once trying to maneuver my faltering, quivering body out of bed in the morning. As my speech slurs with fatigue and my word recall is failing, I think about the joy I’ve always found in oral communication — it’s how I connect with the world around me. I’m a storyteller, a teacher, a talker. The idea of losing these things that make me me is unbearable, as it is for anyone diagnosed with a debilitating and potentially terminal disease.
See a meteor shower. I checked this one off the list.
I am leaning into these end-of-life plans, engaging both the creative and Type A aspects of who I am. I am taking online art classes, learning to sketch, to paint, trying to teach myself to knit while simultaneously writing my care plan, getting my “final wishes” down on paper. “Final Wishes” is such an odd statement. I imagine genies seduced from bottles and how you can’t “put the genie back” once it’s freed and am reminded of the permanence of my decision.
Making Lists
I don’t like the term “bucket list,” but I’ve been making one —well, part bucket list, part to-do list. In my mind, I’ve divided this into three parts: places to see/go, things to do, things to no longer do. The list has things like:
Places to see/go:
1. See the northern lights in Maine, hike while I’m there.
2. See fall foliage somewhere in the northeast. One more time.
3. Visit another country. I’ve settled on Algonquin Park in Canada’s Ontario province. Stargaze, see the northern lights from there too.
Things to do:
1. Go camping. Sleep connected to the earth.
2. See a meteor shower. I checked this one off the list.
3. Plant a garden.
4. Collect and compile recipes for my kids, make care packages for each one with sentimental items.
5. Finish/sell my book.
6. Write letters to loved ones. See loved ones.
Things to no longer do:
1. No more offering myself up to those who aren’t interested in genuine loving/considerate relationships.
2. No more hating myself for the past. I want to love the life I lived, flawed as it was in many ways.
3. No more finishing books that I don’t like.
It’s been four years now, counting that lengthy viral illness. I’m tired. I reached the decision to end my suffering after much thought and consideration. I don’t know exactly when, but I’m close to settling on an assisted end-of-life plan.
But now, instead of wondering how my disease/s and decompensation will progress, worrying about the logistics of needing a greater level of care, I’m thinking more about living for the first time in…well, at least four years, maybe more. I’m seeking joy, love and kindness and looking for everyday opportunities to pour those things back out into the world around me.
Some days, I’m successful and other days, I’m not. I’m not a gracious sick person. But in all of this, I’m grateful that in planning for my death, I’ve finally learned what’s important to me…finally learned how to live.
Funeral rituals, deeply rooted in cultural and religious practices, offer a profound glimpse into the diversity of human traditions. While many share common elements of grief and remembrance, some cultures have unique and, at times, peculiar funeral customs that might seem strange to outsiders. Exploring these distinctive rituals unveils a rich tapestry of beliefs surrounding death and the afterlife. From celebratory ceremonies to unconventional burial practices, the world’s funeral traditions reflect the intricate ways in which societies cope with loss and commemorate the departed
Hanging Coffins in Sagada, Philippines:
In the mountainous region of Sagada in the Philippines, some indigenous communities practice the tradition of hanging coffins. Instead of burying their dead, they place coffins on cliffs or in caves. This practice is believed to bring the deceased closer to ancestral spirits and protect them from being taken by animals.
Fantasy Coffins in Ghana:
In Ghana, a unique funeral tradition involves the creation of fantasy coffins that reflect the deceased person’s occupation or interests. Shaped like objects such as animals, cars, or even shoes, these vibrant and elaborate coffins celebrate the individual’s life and legacy. The belief is that these custom coffins will assist the deceased in the afterlife.
Sky Burials in Tibet:
In Tibet, the sky burial is a unique funeral practice rooted in Tibetan Buddhist beliefs. The deceased’s body is taken to a designated site, typically atop a mountain. There, the body is left exposed to the elements, allowing vultures to consume it. This ritual symbolizes the cycle of life and death and is seen as a way of offering the body back to nature.
Self-Mummification in Japan:
A sect of Buddhist monks in Japan, known as the Shingon, practiced a form of self-mummification called sokushinbutsu. Monks adhering to this ritual would slowly starve themselves while consuming a special diet that included toxic tree sap. This process aimed to achieve enlightenment and transform the monk’s body into a mummy, symbolizing a bridge between the physical and spiritual realms.
Endocannibalism of the Fore People, Papua New Guinea:
The Fore people of Papua New Guinea were known for a ritualistic practice called endocannibalism. In response to their belief that consuming the deceased’s remains would strengthen their ties with the spirit world, the Fore would eat small portions of the deceased person’s body. This practice was largely abandoned due to the spread of kuru, a neurological disease linked to cannibalism.
Famadihana in Madagascar:
Famadihana, or the turning of the bones, is a Malagasy funeral tradition where families exhume the remains of their ancestors for a joyous celebration. The bones are wrapped in new burial cloths, and a festive gathering ensues, complete with music, dancing, and feasting. This ritual reflects the belief that the spirits of the deceased are still present and part of the community.
