09/20/17

Why the Irish get death right

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We’ve lost our way with death, says Kevin Toolis – but the Irish wake, where the living, the bereaved and the dead remain bound together, shows us the way things could be done

Kevin Toolis … ‘My father’s dying, his wake, his willing sharing of his own death, would too be his last parental lesson to his children and his community. A gift.’

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In the narrow room the old man lay close to death.

Two days before, he had ceased to speak, lapsed into unconsciousness, and the final vigil had begun. The ravages of cancer had eaten into the flesh leaving only a skeletal husk. The heart beat on and the lungs drew breath but it was impossible to tell if he remained aware.

In the bare whitewashed room, no bigger than a prison cell, 10 watchers – the mná caointe – the wailing women, were calling out, keening, sharing the last moments of the life, and the death, of this man. My father. Sonny.

“Holy Mary, mother of God, pray for us now, and at the hour of our death.”

In the tight, enclosed space, the sound of this chorus of voices boomed off the walls, the ceiling, louder and louder, reverberating, verse after verse, on and on, cradling Sonny into death.

This death so open, so different from the denial of the Anglo-Saxon world would, too, be Sonny’s last parental lesson.

How to die.

If you have never been to an Irish wake, or only seen the movie version, you probably think a wake is just another Irish piss up, a few pints around the corpse and an open coffin. But you would be wrong.

Kevin’s father, Sonny Toolis.

In the Anglo-Saxon world, death is a whisper. Instinctively we feel we should dim the lights, lower our voices and draw the screens. We want to give the dead, dying and the grieving room. We say we do so because we don’t want to intrude. And that is true but not for these reasons.

We don’t want to intrude because we don’t want to look at the mirror of our own death. We have lost our way with death.

On the Irish island where my family have lived in the same village for the last 200 years, and in much of the rest of Ireland, death still speaks with a louder voice. Along with the weather reports of incoming Atlantic storms, the local Mayo country and western radio station runs a thrice daily deaths announcement enumerating the deaths and the funeral arrangements of the 10 or so daily freshly departed. There is even a phone line, 95c a minute, just so you can check up on those corpses you might have missed.

There should be nothing strange about this. In the absence of war and catastrophe, humans across the planet die at an annual rate of 1%; 200,000 dead people a day, 73m dead people a year. An even spread. It’s happening all around you even as you read this article; the block opposite, the neighbouring street and your local hospital.

If the local radio in London or New York did the same as that Mayo station, the announcer would have to read out the names of 230 dead strangers, three times a day, just to keep up.

Of course, if you live in a city such as London, where 85,000 people die each year, you would never know of these things. Such a very public naming of the dead, an annunciation of our universal mortality, would be an act of revelation in the Anglo-Saxon world. And likely deemed an outrage against “public decency” – which would almost certainly lead to advertising boycotts and protests.

More shocking still then would be the discovery of another country where the dying, like Sonny, the living, the bereaved and the dead still openly share the world and remain bound together in the Irish wake.

And death, in its very ordinariness, is no stranger.

My father, Sonny Toolis, was too a very ordinary man. He was never rich or powerful or important. He never held public office and his name never appeared in the newspapers. The world never paid him much attention and Sonny also knew the world never would. He was born poor in a village on an island, devoid of electricity, mains water and tarred roads, in much the same way the poor have been born in such places for most of human history.

Sonny never got the chance to get much of an education and worked most of his life as a foreman on building sites earning the money to pay for the university education of his seven children.

Sonny was good with his hands though. Useful to have around if things went wrong with the electric, the drains, or you needed the furniture moved. He had his limitations; he did not like strange peppery foods, he wasn’t very comfortable wearing suits, and he was terrible at giving speeches at weddings.

He did have a great singing voice, played the bagpipes and the accordion, and taught his children to sing by what he called the air – by listening along. In the 1960s, he bought a 35mm German camera, took pictures, and ran the prints off in his own darkroom. He even shot film on Super 8. But it was never more than a hobby. Like a lot of us, Sonny had some talents he would never fully realise in life.

But Sonny really did have one advantage over most of us. He knew how to die. And he knew how to do that because his island mothers and fathers, and all the generations before, had shared their deaths in the Irish wake and showed him how to die too.

His dying, his wake, his willing sharing of his own death, would too be his last parental lesson to his children and his community. A gift.

The wake is among the oldest rites of humanity first cited in the great Homeric war poem the Iliad and commonly practised across Europe until the last 200 years. The final verses of the Iliad, the display of the Trojan prince Hector’s corpse, the wailing women, the feasting and the funeral games, are devoted to his wake. And such rituals would be easily recognisable to any wake-goer on the island today.

For our ancestors, a wake, with its weight of obligations between the living and the bodies of the dead, and the dead and living, was a pathway to restore natural order to the world, heal our mortal wound, and communally overcome the death of any one individual. An act, in our current, thin psychological jargon, of closure.

Through urbanisation, industrialisation and the medicalisation of death, the wake died away in most of the western world and death itself came to be silenced by what might be called the Western Death Machine. But out in the west, among the Celts, this ancient form of death sharing lives on.

When he was 70, my father was diagnosed with pancreatic cancer – still among the most fatal cancers among western men. Sonny never flinched. He did not want to die but when he knew he had no choice, he never wasted the time he had left. He wasn’t angry or embittered but something wiser – he accepted his death. He got on with his dying the same way as he had got on living, day by day, pressing forward, husbanding his energy.

Sonny’s time had come but neither he nor his community denied his impending death. Unlike the shunning of the Anglo-Saxon world, his house filled with visitors who came to see him because he was dying.

Dying is an exhausting, self-centring act. Sonny, always a powerful physically imposing man, rapidly shed powers like a snake shedding skin. His world shrank to two rooms and Sonny knew he would never see the end of that fateful summer.

Sonny’s fatherhood was ending and my own beginning. Our last words together on his deathbed were very ordinary, bland. “I’ll let you go, son,” he said as I left to return to the city. When I returned, he had lapsed into a coma and could no longer speak.

But our parting was fitting. There was no more mystery to share. No revelation to be uncovered. Our identities as father and son had already been written out in the deeds of our life together; Sonny changing my nappy, not losing his temper in my teenage contrariness, encouraging me in my education and the summers we shared on building sites when I worked alongside him while still a student. And in all the countless ways he showed me in his craft how to be a man and father myself.

Sonny died just before dawn on the longest day of the year at home in the village of ancestors. No one called for help, or the “authorities”. He was already home with us. His body was washed and prepared for his coffin by his daughter and sister-in-law. He was laid out in his own front sitting room in an open coffin as his grandchildren, three, five and nine, played at the coffin’s feet.

His community, his relatives, some strangers even, came in great numbers to pray at his side, feast, talk, gossip about sheep prices or the stock market, and openly mark his death in countless handshakes and “Sorry for your trouble” utterances.

We waked together through the night with Sonny’s corpse to guard the passage out for his departing soul and man the Gate of Chaos against Hades’ invading horde lest the supernatural world sought to invade the living world. Just as the Trojans too before us had watched over Hector’s corpse. A perpetual quorum; dying in each other’s lives and living on in each other’s deaths at every wake ever since.

It was blessing of a kind, an act of grace. We give ourselves, our mortal presence, in such death sharings, or we give nothing at all; all the rest of our powers, wealth, position, status, are useless.

To be truly human is to bear the burden of our own mortality and to strive, in grace, to help others carry theirs; sometimes lightly, sometimes courageously. In communally accepting death into our lives through the Irish wake we are all able to relearn the first and oldest lessons of humanity. How to be brave in irreversible sorrow. How to reach out to the dying, the dead and the bereaved. How to go on living no matter how great the rupture or loss. How to face your own.

And how, like Sonny, to teach your children to face their death too.

Complete Article HERE!

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09/15/17

Hiding who I am: The reality of end of life care for LGBT people

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Everyone should have the right to high-quality palliative care when they have a terminal illness, regardless of their condition, where they live, or their personal circumstances. It’s commonly assumed that everyone with a terminal illness gets the care they need, however one in four people who need palliative care in Northern Ireland are not currently accessing it.

 

by

Raising awareness of the issues

The problem can be particularly acute within the LGBT community, and last year, research commissioned by Marie Curie found that concerns around discrimination, stigma and invisibility can often cause LGBT people to access services late or not at all.

To explore these crucial issues, Marie Curie Northern Ireland held a policy seminar to raise awareness of the barriers faced by our LGBT community in accessing end of life care and what can be done to address them.

Held in Stormont, the home of the Northern Ireland Assembly, the event brought together a wide range of stakeholder groups, departmental officials, MLAs and health and social care representatives.

oan McEwan, Head of Policy and Public Affairs at Marie Curie Northern Ireland spoke about the need for LGBT people to be able to access care, free from discrimination.

Championing compassion and understanding

Guests heard from Joan McEwan, Head of Policy and Public Affairs at Marie Curie Northern Ireland, as well as John O’Doherty, Director of local LGBT organisation the Rainbow Project  . John discussed the needs of older LGBT people in health and social care, and said:

“Accessing care as an older person is something many of us do not consider we will need until it is upon us – particularly end of life care. This is a difficult time for everyone, but for many LGBT people, fears of homophobia and invisibility exacerbate an already distressing and difficult time.

“Ensuring services are accessible, safe and considerate of the specific needs of LGBT people means understanding their experiences, particularly the impact of homophobia, transphobia and marginalisation throughout their life.

“Marie Curie’s work in end of life care for LGBT people is imperative to ensuring that everyone living with terminal illness in our society can access care and support that is underpinned by compassion and understanding.”

Dr Richard O’Leary spoke about the experiences of he and his partner, Mervyn, when Mervyn was in hospital toward the end of his life.

“The assumption that we were not a couple”

Guests also heard from Dr Richard O’Leary, a retired university lecturer who was a full-time carer for his late partner Mervyn. Richard said:

“When we came to access end of life care as a same sex couple we were fearful of what we might encounter from service providers.

“My civil partner Mervyn was admitted to hospital many times and the assumption that we were not a couple was made at least once during every hospital stay. In the public ward in hospitals I was wary of showing affection to Mervyn because it was unclear whether the hospitals had a protocol to protect us if anyone objected to us being affectionate.

“In hospitals and hospices much of the emotional care of the dying is offloaded to the chaplaincy service. This can be problematic – with one chaplain telling me that they were ‘struggling with the issue’ of same sex relationships.

“Mervyn and I enjoyed 25 years of a committed, loving relationship until he died on 2 August 2013. After Mervyn’s death, there were people in my family and in my faith community who explicitly withheld from me the expression of condolence.

“Service providers should be aware of the disenfranchised grief and reduced social support that may be experienced by LGBT persons during bereavement. I’d like to thank Marie Curie for their pioneering research and leadership in the area of end of life care for LGBT people.”

Making good practice more widespread

The presentations made clear that there are pockets of good practice in end of life care provision for the LGBT community. Service providers and HSC professionals must now work together to take these examples and make them universal – to ensure LGBT people receive high-quality, person-centred care that acknowledges and supports them during terminal illness.

Dr Richard O’Leary, Melanie Legg, Joan McEwan, Mark H Durkan and John O’Doherty at the event on 7 September 2017.

Read our report,  ‘Hiding who I am: end of life care for LGBT people’  , which explores why LBGT people experience significant barriers to getting palliative care when they need it.

Complete Article HERE!

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09/14/17

Grief Isn’t Something to Get Over

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The notion that one gets over it is a myth.

by Mary Lamia

The emotion of grief may be triggered by the loss of a loved one or the result of a life circumstance. Many people believe that if you have effectively mourned a loss you will then achieve closure. The notion that one mourns a loss and then gets over it, to the extent that emotions about the loss are not triggered in the future, is a myth.

Similarly, children have such expectations about getting over loss. They seem to believe that one needs to do something in particular in order to achieve that goal. Several years ago, as host of a radio talk show for kids, I asked listeners about the issue of loss. An 8-year old boy told me that his grandfather had died two weeks before and he wanted to know how to get over it-he thinks about him all the time and can’t concentrate on anything else. A 12-year old boy explained that his dog had died and he wanted to know what to do since he couldn’t say good-bye to her and didn’t think that he could ever “fill [his] heart with anything else.” I didn’t ask what he meant by his choice of words, however, I felt its meaning. A 13-year old girl said that she asks her brother about what clothes look good on her because she doesn’t have a mom, and it always feels like something is missing. She asked, “How do I get over my mom dying?”

The misguided notion that grief is a process that allows a final working through of a loss is likely the fault of my own profession–mental health professionals who have promoted this notion in their work with grieving individuals. Clinical data makes it clear that any significant loss, later and repeatedly, brings up longing and sadness. Is it because these people have not achieved closure by traversing prescribed stages of mourning or because they have not “worked through the loss” as some therapists boldly claim? No. It’s because you never get over loss. As time passes, the intensity of feelings about the loss will lessen, you might also find ways to sooth or distract yourself, or you can partially bury grief-related feelings by creating new memories. But you’re not going to get over it because that’s impossible: you cannot erase emotional memory. Besides, it’s not about achieving closure. Instead you have to figure out what you are going to do when your emotional memories are later triggered.

Emotions that have to do with loss are triggered throughout our lives. Usually they are in the form of anniversary reactions, such as the birthday or death day of the lost loved one or any significant holiday in which you might want to be with the person who is gone. Reminders, such as visiting a place you’ve been with the person you lost, will trigger a similar response. Episodes of depression or anxiety that seem to come from nowhere may have been activated by anniversary reactions or situation-matching reactions.

Grief can also be triggered by an age-matching anniversary reaction, which is when a person’s age matches the age of a parent or loved one when they died. The remarkable power of age-matching anniversary reactions arising from the loss of a parent in childhood was demonstrated to me when I began training as a psychologist nearly 40 years ago. I had been treating a severely depressed man who, for many months, was not responsive to intensive psychotherapy or medication. Upon discovering with the patient that his depression began at a time in which his age matched his father’s age of death, the depression miraculously lifted. Beneath his depression lay a myriad of fears that he would be like his father, which included dying at the same age of his father as well as guilt that he was not like his father and could live a full life. Although he had been unaware of the age factor, his painful feelings seemed to recreate the trauma of his father’s death, which was too overwhelming for him to feel when he was ten years old.

One of the reasons that grief happens to be triggered by external reminders, such as in anniversary reactions, is because grief is an emotion that sends a vague alert to help you to remember, rather than to forget. Even so, what most people do with grief is attempt to forget–to get over it–which is quite contrary to the purpose of the emotion. Rather than try to forget, one must attempt to remember and accept what the emotion is trying to convey. There are many ways to remember. You can remember what you learned from the person you lost, remember what you enjoyed, and you can cry if you feel like crying. Even if your grief is about a relationship gone bad, there is always something that you can learn through recollection.

There are related themes of loss that people express, and later grief responses related to those losses, such as the many women and men who have given up a child for adoption. The child’s birth date does not pass by without an emotional reaction, whether or not they recognize it at the time. Similarly, the date a child would have been born for a childless woman who has had a miscarriage can trigger grief. The experience of loss when a relationship ends can be triggered on the former partner’s birthday, on the anniversary of when you met, or on any holiday.

Whenever I am bothered by the thought of just how misguided the notion of stages of grieving can be, I remember one patient in particular who wanted help with the depression she had every summer, which at the time she told me was when her 12-year old child had died 25 years before. She sought therapy because she was convinced that something was wrong with her. Every June, for 25 years, she had experienced a grief response. Simply knowing that she wasn’t crazy because of the intense emotions she felt made it a bit easier the next time June arrived. Rather than try to get rid of her painful feelings at the time, instead she learned to think about exactly what she would do to remember her son.

Henry Wadsworth Longfellow sums up the lifelong experience of grief in the first 3 lines of his poem, Secret Anniversaries Of The Heart:
The holiest of all holidays are those
Kept by ourselves in silence and apart;
The secret anniversaries of the heart.

For more information regarding my books about emotions: http://www.marylamia.com

Complete Article HERE!

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09/13/17

Why being aware of your mortality can be good for you

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It is only nothingness … for ever and ever.

By and

Nobody likes to think about lying on their death bed. From health anxiety to midlife crises, it seems like thoughts about ageing and death can often unleash some level of neurosis. But is that the whole story? We have examined mortality awareness – the realisation that we are all one day going to die – and found that, although the prospect of death is often scary, it can also have positive effects.

Perhaps unsurprisingly, research on death awareness so far has focused largely on the negative aspects of realising that we will eventually stop living. Indeed, until now, the dominant psychological theory has been “terror management theory”, which assumes that contemplating our demise invokes fear and anxiety. For example, studies using this framework have found that thinking about death can make us more punitive and prejudiced.

However, throughout the years, literature from various fields has offered other explanations. For example, “positive psychology” proposes concepts such as “post-traumatic growth” – the idea that people can grow psychologically through traumatic experiences. Thinking about the fact that we will die may be hard, but according to this theory it could also help us to get stronger psychologically.

In our recent study, published in OMEGA – Journal of Death and Dying, we asked 356 participants from 18 to 80 years old questions about their experience of mortality. We asked them to indicate the extent to which they agreed with 89 statements which covered a wide variety of possible attitudes to death awareness. These included “I do not let the fear of dying rule my life”, “I want to be remembered for doing great things for the world when I am no longer alive” and “I am scared of dying before I am old”. In this way, we explored how many aspects of such awareness we could identify.

To see how the results might align with positive or negative features of their experience, we also asked our respondents about how interested they were in their health, how prone to taking risks they were, and how eager they were to conform (such as obeying rules).

Some of the attitudes we identified were negative. These included being fearful, feeling disempowered (realising personal vulnerability in the face of death), and feeling disengaged (refusing to acknowledge death). We found that those people who reported higher levels of disempowerment and disengagement also reported taking more risks and were more reluctant to conform. It may be that people who report taking greater risks do so because they feel that they will die regardless of what they do. Those refusing to conform on the other hand may be attempting to empower themselves in the face of the inevitable.

We also discovered that younger individuals and people with lower levels of education attainment were more likely to have negative attitudes to death. However, it is not all bad news for these individuals. For example, we found there was a relationship between mortality fearfulness and placing a high value on staying healthy. So it would appear that fearing death may cue attempts to control its unpredictability.

The power of legacy

Interestingly, we also found a few positive aspects of pondering mortality. One is accepting it rather than running away or fearing it, which can help us to make the most of our time-limited existence.

We also identified what we call mortality legacy awareness. This is a form of mortality awareness that drives the need to leave something behind after we have gone – thereby outliving and transcending death. This could be a highly creative force.

Having children can make us feel better about ageing and death.

The need for a legacy turned out to be an important contributor to dealing effectively with the prospect of demise, lessening feelings of hopelessness and a lack of purpose. In the study, legacy awareness was found to be correlated with both trying to be healthy and striving for spiritual growth (such as believing that life has purpose).

This suggests that those who are interested in passing down their succession to future generations as a way to transcend death are also likely to take responsibility for their health and place value on their internal development. Artists are the perfect example of this: through their creative legacies, they live on and are never totally gone. Working on leaving a legacy – whether it be producing art, raising a family, passing on family history or helping others – can also be a way for people to better tolerate ageing and face the prospect of death.

Such legacies also help those who remain to cope with their loss. On a more basic level, being aware of our ability to provide a legacy that outlives us can be an excellent way to motivate ourselves to accomplish more, stay healthy, focus on the here and now, and maintain good relationships.

Of course, the results are all based on correlations – we don’t show conclusively that striving for a legacy actually does make people feel more fulfilled. Our latest research project (currently under peer review for publication) has therefore studied 10 people’s experience of mortality awareness in depth – through one-to-one interviews. The outcomes of this work confirmed the findings from our first study and offer additional support to the claim that legacy awareness is a major element in people’s search for meaning – helping to manage death-related anxiety.

So the next time you face a haunting reminder of your death, remember that focusing on what you would like to leave behind could help you turn something terrifying into a positive motivational tool.

Complete Article HERE!

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09/4/17

Dying a good death: How to prepare yourself and others for the end of your life

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Like it or not, death is the inevitable conclusion of all our lives. Although it’s a normal, natural process, it isn’t an easy or straightforward thing to deal with.

While we can’t stop death, there are things we can do.

Talk about death

If you find it too difficult to talk to family and friends about death, you could always try talking to complete strangers over coffee and cake.

At a Death Café, people who’ve never met before come together to discuss the end of life.

The idea began with an art exhibition held by Swiss sociologist Bernard Crettaz in 2004, but became a global phenomenon when Jon Underwood began hosting events in London in 2011.

Dr Naomi Richards from the University of Glasgow is researching the phenomenon and has found that participants are able to sympathetically engage with each other’s thoughts and experiences on death and dying.

But Death Cafés are not the only option.

Some people hire a ‘death doula’ to assist them through this part of life. The assistance they provide varies greatly, from talking about death through to assisting them at their bedside.

Make decisions about treatment

Dr Euan Paterson, a retired GP and palliative care specialist, says improved medical technology has created an issue for doctors treating dying patients.

“It’s much harder not to do something than to try and do it. We’ve got generations of doctors, me included, who have been weaned on the idea that we can fix everything.”

“The desire to constantly offer things, constantly treat, constantly improve, constantly resurrect is very hard to let get go.”

But extension of life may come at cost of quality of life.

Linda Tierney was diagnosed with terminal cancer and told she wasn’t likely to live more than a year.

She decided not to have further treatment as she felt the side effects would be too great.

Another area where patients can make decisions ahead of time is about what to do in the event of our heart stopping.

In Scotland, a system called eKIS is used by hospitals, GPs and ambulance staff. Through this, we can record if we do not wish to be resuscitated.

In Cradle to Grave, Dr Dan Beckett explained the crucial difference between a cardiac arrest and natural dying.

While a cardiac arrest might be reversible through cardiopulmonary resuscitation, better known as CPR, in the case of natural death the heart stops because the body itself is dying.

Plan your funeral

Linda has played an active role in organising her own funeral, with the help of her son and a Marie Curie nurse.

One of the first things I asked was who’s going to do my hair? Who’s going to do my make up? And the girl at the funeral home: she thought this was amazing.

“She said ‘I am. I’ve been doing this job for 17 years and I can assure you you’re going to look the best you’ve ever looked!’

“Everything is done. Music done. Ministers been told what songs are being played. What readings I want. Everything has been sorted.”

Sort out your will

Hilary Peppiette is a solicitor who is also training to become a death doula.

She says making a will is one of the best ways to make things easier for your family after your death.

“Primarily in your will you appoint executor to deal with your estate after your death, to make sure your wishes are carried out.”

“You decide who is going to benefit from your estate after your death. It is very important to put it down in writing to make sure that the people you want to be provided for are provided for.”

“It doesn’t always happen automatically the way that people sometimes think it sometimes it will. Even if you feel you have nothing to leave, you don’t have very much in the way of assets, it’s very important to write down what you want to happen.”

Complete Article HERE!

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08/27/17

5 Things The Death Of My Best Friend Taught Me About Life

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By Megan Harris

On July 6, 2015, I awoke to a phone call alerting me that my best friend of 17 years had been killed.  

The details were spotty: there had been a boating accident roughly 36 hours prior on a lake in North Carolina. Jenna had been killed along with her uncle. Her cousin and boyfriend, also on the boat, were in the hospital.

As I tried to make sense of what happened, I felt as though I was having an out-of-body experience. The entire time I sat in a comatose state of disbelief, my eyes glued to a text message she had sent me less than four hours before the accident. My brain refused to believe that someone I had just spoken to could be gone. I called her phone over and over again, hoping she would answer and explain that the whole thing had been an elaborate misunderstanding; but every time her voicemail picked up, the automated response alerted me that the mailbox was full.

The weeks that followed were a blur. Planning her funeral, comforting her grieving family and friends, packing up her house, all of the terrible side effects of tragedy compounded by the fact that she was four months shy of her 30th birthday.

And just like that, I entered into a completely new chapter: Life After Death.

Here’s what I’ve learned.

Every cliché you’ve ever heard is true

Life is precious. Everyday is a gift. Live each day like your last. Before losing my best friend, phrases like this seemed reduced to posters hanging on the walls of a guidance counselor’s office or accompanying a wistful Instagram post of a woman staring off into the sunset. Now, they read like totems from people who walked a similar path before me.

Losing someone, especially so suddenly, is a sobering reminder that the time we have on this planet really is so finite. All of the time we spend frustrated sitting in traffic, obsessing over how we look or what we’ll wear, arguing with a partner over who should unload the dishwasher, things that take up so much real estate in our minds cease to be important the moment our life is over. With that new knowledge, knowing that today could be our last, do we really want to spend it pissed off?

Now, I chose to live by a new rule: Life is short, order dessert.

You are stronger than you think

If you would have asked me a few years ago what my thoughts on death were, you would have been met with stunning anxiety. I spent so much of my time thinking about what I would do if I were to experience loss. I obsessed over how I would feel if I were to lose a loved one. I comforted grieving friends with praise, proclaiming them to be so strong, so resilient — all the while imagining myself in the same situation with different results. Surely I would be a withering mess, I told myself. I’d probably never stop crying or be able to smile again.

Then, one day, I was walking in their shoes and, believe it or not, I was putting one foot in front of the other. Sure, it was miserable and challenging, but I was doing it. I was still here, breathing and living and moving. To borrow a line from Bob Marley, “You never know how strong you are, until being strong is your only choice.” Another cliché come true.

Grief, like life, is a rollercoaster

If death teaches us anything, it’s that life is a constant of ups and downs. With every momentously tragic event, there are also incredible highs: birthdays, anniversaries, first love, first heartbreak, job promotions and layoffs. All of the ebbs and flows of life play out similar to the phases of grief.

Some days there are intense lows where the very act of getting out of bed seems impossible. Other days there are glimpses of happiness found in revisiting a memory or the first time you laugh, really laugh, after believing you may never feel joy again. The amount of time we spend on this rollercoaster differs for everyone; for some, we never disembark. But, as we grow to learn in time, the peaks and valleys become less severe and we are able to anticipate when the next heart-stopping plunge is around the corner.

Your pain can be used to help others

I am always so amazed by people who are able to turn their tragedy into triumph. We see stories everyday of profound individuals who have been to the edge and come back better, stronger, believing their divine purpose is to use their suffering to help others. I am not one of those people. I did not open a charity or become a motivational speaker.

For a long time, all I did was cry and move about my days in a zombie-like trance. Then, one day, an acquaintance of mine posted on Facebook about losing their friend in a freak accident. Immediately, I felt compelled to reach out to them to offer my condolences and share resources (books, a local therapist). I hoped I could provide them with some comfort, albeit minimal. I didn’t run a 5k or raise money, but the very act of letting someone know they weren’t alone made me feel as though I could make a difference, however small.

You’ll never be the same — but you will be okay

While you never fully “get over” loss, in time, you do learn how to live with it. For me, grief feels like living with an injury that never quite properly healed. Your body learns to adapt and rebuild and, over time, scar tissue covers the spot where the injury occurred.

You learn to live with this “new normal.” A giant, ugly scar that reminds you of the beautiful person you once knew. Sometimes it hurts and other times it just hurts to look at; but it’s always there — even if years later others can’t see it or even remember you have it. Life does go on after tragedy. It doesn’t go back to the way it was, but it does move forward. You keep moving forward — and that’s okay.

Complete Article HERE!

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07/30/17

Learning to live before I die

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By Roberta Ness

I am going to die.

I don’t mean right this moment and I don’t mean that I invite it. I mean that it is inevitable. Echoing in my mind ever louder is the old adage, “the only thing guaranteed in life is death.”

Most of my life – until the very end of it, for many of us – we simply deny death. We forget or don’t hear or don’t heed the echo. But I’m doing the opposite. Like the famous commentator Norman Cousins I’ve decided to embrace dying. Cousins said, “Death is not the greatest loss in life. The greatest loss is what dies inside us while we live.”

First, let me explain what seems like a morbid focus on my mortality. You can skip the next few paragraphs if you’re easily grossed out, and for a long time I didn’t tell anyone because it’s pretty disgusting. A couple of years ago, I developed life-threatening diarrhea. Imagine that dreaded clean-out prep you have to undergo for a colonoscopy. Except that it doesn’t just go on for a day; it goes on for days without end. Just keeping myself hydrated was a constant challenge. I laid on the couch pretty much unable to get up. Fortunately, my gastroenterologist made a diagnosis of an autoimmune disease like lupus – except that my immune cells seem to particularly love munching on my colon.

Also, fortunately, modern medicine has developed a special steroid that for me was a cure that helped me to be, thankfully, (mostly) symptom-free. Then I went to South Africa and all hell broke loose. My colitis symptom – eliminating huge quantities of brown water as often as every 15 minutes – recurred full blast. Again, a raft of tests revealed the diagnosis and a treatment. It was none other than traveler’s diarrhea – three types of E. coli were all partying in my bowels and a blast of antibiotics took them out.

Out of the woods again – whew – except I wasn’t. About a week later I got yet another series of bouts. This time my stool tests were clean. So what was going on? Just as I faced another colonoscopy I remembered the miracle steroid. I had tried it after South Africa and it did nothing. But that was when I’d been loaded with bacteria. Maybe the bugs had triggered a recurrence of the underlying disease? So I started myself back on the steroid and I seem to be OK again. But coming to terms with the fact that I will live the rest of my life with this autoimmune condition has forced me to acknowledge my own mortality.

As my friends age, each is confronting death. Those with chronic diseases are dealing with this reality more actively. But even in those who remain entirely healthy and robust, I see signs – mostly signs of denial.

Don’t get me wrong. Denial is a terrifically adaptive defense mechanism. But is it the best way to avoid dying while we still live? What does it look like for me to not just deny but actually welcome my lifetime limit? It looks like the Tim McGraw song:

“I went skydiving. I went Rocky Mountain climbing. I went 2.7 seconds on a bull named Fumanchu. And I loved deeper. And I spoke sweeter. And I gave forgiveness I’d been denying. And he said, ‘Someday I hope you get the chance to live like you were dying.’ ”

I’m not so sure about the bull riding and the skydiving, but other than that I’m living by McGraw’s recipe. I’ve taken up Ecstatic dancing. I’ve become a regular at ad lib storytelling events – although so far just as an audience member. I’ve been traveling more and to more exotic places. I’ve gone to my first rock ‘n’ roll concert. I’m even going (only because my 20-something children invited and are going with me) to Burning Man – a kaleidoscopic art and music happening in the Nevada desert. And, yes, I know that temperatures there range from 110 degrees during the day to 30 degrees at night, and I know I’ll need to truck in all my own provisions including tent, water and a face mask for the sandstorms.

Most importantly, I’ve been giving/asking for forgiveness. And I’ve become incredibly committed to loving more deeply. So yes, I’m dying. But inside I’m more alive than I’ve ever been.

Complete Article HERE!

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