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Thoughts on John McCain’s Cancer Diagnosis and Why Death Positivity Needs to Reframe Cancer Talk

Author: Gage Skidmore
Author URL: https://www.flickr.com/people/gageskidmore/
Title: John McCain & Mitt Romney

This week we were informed that Senator John McCain was diagnosed with malignant glioblastoma.  The median survival for patients with malignant glioblastoma is 14 months, while roughly 10% of those diagnosed live up to five years.

John McCain is the definition of brave.  He was a prisoner of war in Northern Vietnam for five and half years.  For over a year of McCain’s imprisonment, he was beaten continuously, sometimes twice a day, in an attempt to break him.  As a result of his beatings, he’s is unable to raise both of his arms above his head.  Despite the brutality that he suffered for being an American soldier, after his retirement from the Navy he continued to serve his country as a congressman and senator from 1982 until today.

Naturally, knowing John McCain’s history as a soldier and tenacious public servant, the language that people have used to encourage him after his cancer diagnoses have mainly been war language.  President Obama tweeted this:

It only makes sense that we’d use such language for a warrior such as John McCain, but, oddly enough, when it comes to cancer, most of us default to war language for the stay-at-home mom who has breast cancer, for the auto-mechanic with lung cancer, for the construction worker with skin cancer.

We say things such as this:

“John is fighting courageously against cancer.”

If John’s cancer goes into remission, we say something like this:

“John beat his cancer”

And if someone dies from cancer, we see obituaries state,

“Sadly, John lost his battle with cancer.”

There are a couple problems with this cancer language, problems that need to be informed by death positivity.  When we start from the basis that we are mortal, war metaphors start to fail because mortality is our lot, it’s a part of who we are and fighting against this aspect of ourselves leads to this fragmentation, where we assume that death is something other than us, something that is foreign, something that needs to be battled, something that we need to fight against.  We are both alive and mortal and instead of seeing our mortality as foreign, the better way and the better language is to see our mortality as part of our journey.  We are journeying through cancer treatment, we are still living our life amidst our sickness, we aren’t letting cancer define us, nor are we letting “the battle” define us.

Writing for the Guardian, terminal cancer patient Kate Granger summed up this idea of embracing our mortality when she wrote this:

Some days cancer has the upper hand, other days I do. I live with it and I let its physical and emotional effects wash over me. But I don’t fight it. After all, cancer has arisen from within my own body, from my own cells. To fight it would be “waging a war” on myself …. As a cancer patient who will die in the relatively near future, I believe rather that instead of reaching for the traditional battle language, [life] is about living as well as possible, coping, acceptance, gentle positivity, setting short-term, achievable goals, and drawing on support from those closest to you.

Certainly, we love life.  We want to see our children get older, we want to be around our friends, but sometimes with cancer, it’s okay to accept that we will die.  It’s okay to stop the treatment, not because we’re “giving up the fight” but because we recognize that we’re mortal.  You’re not “losing the battle” when you have terminal cancer and you decide to forego further treatment.  In fact, sometimes the brave act is in accepting the future, accepting the terminal prognosis and deciding to live your life to the fullest sans the body breaking treatment of chemo and the rigors of doctors visit after doctors visit.  If we use the journey language, we recognize that it’s not about who lives the longest, but who lives the best.  It’s about the best journey, not the farthest journey.  It’s about living life to the fullest, not living forever.  The language of journey reframes our understanding and it takes away the shame and possible guilt one might feel if we use terms like “losing the battle” and “giving up.”  You are not “giving up” if you decide that it’s best to stop your treatment, it could be said that you’re bravely living your journey.

Finally, if you die of cancer, you didn’t lose.  This idea that you’re somehow a loser if you die from cancer is perhaps the biggest problem with war language.  Kristen Garrison writes:

 

How can a woman with metastatic bone lesions read Lance Armstrong’s story of conquering the disease and feel anything but failure? His story may be true, but does not represent the average person, and such narratives, which get so much press attention and bookshelf space, undercut the comparably determined but unsuccessful efforts of people fighting cancer.

Let’s bring this back to John McCain.  John wouldn’t be a loser when he dies from this cancer.  He was and will continue to be a lauded individual who served his country in multiple fields.  He was one of the bravest soldiers during Vietnam.  And dying from cancer that will kill him won’t change that.  Neither will it change you or me if our fate is the same.  Some of the best people have died from cancer, and some of the worst people have managed to find remission.  My journey, your journey, and John McCain’s journey will not be said to be a lost battle at our very end.  This is our lot.  This is who we are.  We are mortal.  And our character and our journey will be defined by our choices, not random, abnormal cell growth.

If you want to learn more about a death positive narrative, I have a book recommendation for you:

 

 

10 Pieces of Advice for New Funeral Directors

One.  Nobody who “wants” to be a funeral director will make it.

It isn’t something you want in the way that you want a boy/girlfriend or a new car.  No.  It’s more like marriage.  It’s a commitment that’s intended to last.  It’s not a job … nor is it just a profession … this business is a lifestyle.  And if you’re not ready to marry it, then move to another job that demands a less committed relationship.

Two.  Dress Above Your Station

I’m always impressed by a funeral director who dresses well.  Find a good tailor, buy good shoes, spend extra on that suit that fits you really well, keep your hair in shape and smell good.  It might cost you money that you don’t have, but it will pay you back in confidence and numerous good-humored flirtatious advances from people three times your age.

Three.  In the words of Aaron Burr, “Smile more.  Talk less.”

What made Hamilton cool is that he didn’t care about his image, he cared about his legacy.  Burr was the antagonist only because he cared about his image and never forfeited that image for something lasting.  But Burr’s adage of “Smile more.  Talk less.” isn’t all bad per se.  It may have been bad for Hamilton, but for those of us in the funeral industry, it’s pretty good advice.

Four.  Don’t try to be a perfect professional

One of the common pitfalls I see in young funeral professionals is that they’re entirely too stressed out in their pursuit to be the perfect funeral professional.  Families don’t want you to be stressed out.  They don’t need a perfect funeral director.  They need you to be calm, in control of your stress and ready to be present.  It’s hard, I know because I was once that stressed out “professional”, but somewhere along the way I stopped trying to be a consummate “professional” and it was then, and only then, that I really started being present and helping families.

This also means that you know your knowledge boundaries. Direct those questions outside our professional knowledge to the people who are qualified to answer. We aren’t lawyers, doctors, grief counselors or theologians.  And when we don’t know an answer to a funeral question, ask a mentor.  It’s okay if you don’t know an answer; what’s wrong is when we let our pride get the better of us and we act like we do.

Five.  You will get used to the schedule

When you first start in this business, ITS SOOOOOO DAMNNNN TOUGHHHHHHHHH!!!!!  The holidays.  The weekends.  It even takes our nights!  And after it takes our weekends, and our sleep, it tells us to get back up at 7 AM because there are two funerals we have to work the very next day.  It really does take awhile for our bodies and minds to get used to the schedule.  Sometimes our bodies and minds need help getting used to the schedule.  Sometimes we might need a psychologist.  Sometimes we might need a fitness instructor.  But most times we just need a good nap.  If you stick to it, you’ll eventually be able to keep up.

Six.  Allow yourself to learn patience

Have you ever been around grieving people?  At times grieving people act like they’re out of their minds.  And, there’s times when grieving people can act … well … they act kinda crazy.  And it’s their right.  In fact, it’s the reason WE exist.  Their world has been pulled out from under them, they haven’t a foot to stand on and everything that they used to know is suddenly … gone.  And you’re here to help create semblance in the crazy.

It can be tough to learn patience, especially when we’re working on small amounts of sleep and are arranging multiple funerals at once.  But it’s something we have to do.

Seven.  Continually remind yourself why you’re here

The secret to learning patience, to getting used to the schedule, to finding resilience during the tough schedule is this: Learn to love serving others. Probably the best means to cope with the funeral business is found in the people we serve. Love them intentionally and don’t be afraid to find joy in meeting their needs. Don’t be afraid to hear their stories and become part of their family.

Eight. It takes a while to grow into this business (in other words, have patience with yourself)

Generally, you work with older people and older people prefer to work with people within their generation.  It can be hard for a younger person to establish themselves in this business, but it’s very possible. There are no Mark Zuckerburg 18-year-old prodigies in funeral service because being a funeral director is about life experience, not business acumen.

Nine.  Find a Mentor

This doesn’t have to be anything official.  You don’t have to update your Facebook status to “in a mentor relationship with ….”  Find someone you respect in this profession, someone who has more experience than you do, someone who is willing to answer your numerous question and stick close to that person (it’s best if you work with that person).  At one time, this industry was a trade; in other words, it wasn’t taught in schools and regulated by state boards.  It was a trade that was taught by a mentor to an apprentice and the skills and business acumen were passed down through word, practice and in house training.  I do believe that the best funeral directors are still being produced when they treat this work like a trade.  They find a mentor, and they learn by the guidance of someone older and wiser.

 

Ten.  Learn to practice self-care

I’ve been close to being burnt out. Landed in the hospital. Reevaluated life. I started to see a psychologist. I started anti-depressants. I started writing more. I started going to the gym more. Saying “no” more often. I started to realize that if I wanted to take care of others, I had to take care of myself. Self-care is the unselfish act of selfishness and I know for a fact that I’d be out of this business if I didn’t practice it.

If you’re a new funeral director (or you want to be one), I do believe you’ll gain a lot of perspective from my book.  It’s a transparent and personal look at the rigors of being a funeral director.

10 Simple Ways to Avoid Being an Asshole around Death

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One.  Don’t use a death as an object lesson

The first piece I ever wrote for a magazine was about the death of Jackass crew member Ryan Dunn and how people were using his reckless driving death as an object lesson.

Even though it’s tough to do, especially when we want to teach our kids a lesson about “why drugs are bad” and “why you shouldn’t drink and drive”, turning a life into an object lesson grades against the heart of what it means to be human.  People aren’t objects.  And death isn’t a lesson.  Death is this cauldron of feelings, loss, void, laughter, fear, … it’s everything that is human.  Let’s keep it that way.

Two.  Remember the Circles of Grief

The circles of grief (AKA the Ring Theory) is this: Imagine concentric circles (see photo above).  The smallest ring in the center is the person closest to the deceased, whether that person is the deceased’s spouse, a parent, a child or all of the above.  The next circle is representative of the immediate family and very close friends.  A third ring could be extended family, close co-workers, etc.  A fourth ring might be schoolmates, or church acquaintances, etc.  The rings keep going.

The idea with the circles of grief is that comfort always goes in, and dumping always goes out.  If you’re a secondary relationship, it’s not your right to dump all of your grief on the spouse of the deceased.  If you’re a fourth ring relationship, you should NOT expect a close friend to comfort you.  If you’re the closest to the deceased, it’s okay if you dump outward.  And if you’re an outer ring, you should expect to comfort the inner rings.  These circles act as a great template for any of us who are ever in a position to comfort the bereaved.  If you act otherwise, you’re probably being an asshole.

Three.  Avoid cliches

When people use comfort cliches like “you’ll see him again someday” or “things will get better”, they are often more concerned with comforting themselves than comforting the bereaved. Comfort cliches are the practical outpouring of death denial.  Cliches are band-aids that people try to put on a massive wound.  These band-aids oversimplify the problem, they minimalize grief and they trivialize the death.  If you don’t want to be an asshole around death, avoid them at all cost.

Four.  Don’t Join Westboro Baptist Church

Just saying.

Five.  Don’t Say or Write Negative Things about the Deceased

This is simply death etiquette.  It doesn’t matter if the deceased was the worst bastard you’ve ever known, it’s never cool or respectable to take a shot at someone when they can’t defend themselves.  And nobody is more “unarmed” than when they’re dead.

Six.  Don’t Fill Silence with Words

“The real art of conversation is not only to say the right thing at the right place but to leave unsaid the wrong thing at the tempting moment.” —

Dorothy Nevill

When you’re around grief, sometimes you speak too soon, so you decide to wait in silence. Your friend starts to cry. You respond to her tears with your own. Even though you want to respond with words, you know this isn’t the time for words. There are no perfect words here. There’s no perfect anything here. And so you wait.

You stay. Listen. Silence. You take her pain into your soul. Hours pass.

You’ve spoken, not with words or advice; not by trying to solve the problem; nor by placing a limit on your time. You’ve taken the uncomfortable silence, allow the grace for tears, for brokenness; you’ve allowed yourself to sit in the unrest without trying to fix it.

Seven.  Don’t Make the Funeral about You

This past Saturday night, I stood there behind the register book, striking up a conversation with people as they enter the sanctuary. The viewing line snakes around the church, down the hall, and into the basement as we try to extend it through the corridors of the church so as to keep the line from going out into the hot and humid weather of a Pennsylvania summer. The family of the deceased is taking their time, talking to each and every person who has come out on this sweaty night.

“Other funeral directors stand by the family’s receiving line and tell them to keep their conversations short and simple”, one person stated.

“We don’t do that”, I said politely.

Another couple comes through the line and complains that they’ve been standing in line for half-an-hour AND by the look of things, they’ll probably be in line for another half-an-hour. “Can’t you do anything?” they beg.

After having this conversation about 10 times over the next hour, I’m getting tired of my joke and I’m getting tired of people complaining.

I want to pull them close to my face and whisper, “This isn’t about you.”

Perhaps the greatest loss that comes with the drone of our busy lives is that in losing silence, we’ve lost patience, and in losing patience we’ve become so inherently selfish that when we go to a funeral we forget that it’s not about us.  Too many of us have become funeral assholes.

Eight.  Don’t Use Death to Evangelize

Our funeral home’s website has online obituaries for those we are serving.  When someone goes to an obituary on our website, they can write out condolences and post it for the family of the deceased.  A couple years ago we had to ban about five users who went to every one of the obituaries and left a “condolences” that said something like this: “Although we don’t know you, we are sorry for your loss.  Use this time to contemplate your salvation and your relationship with Jesus.”  These “condolence evangelists” may have been well-intentioned, but they totally missed the point.

The point is to remember the deceased and be near to those who loved and lost.  The point isn’t to “get people to heaven” but to bring heaven down through love, community and lots of really good comfort food.

Nine.  Be Culturally Sensitive

We all know that when somebody dies, bacon is by far the best dish to bring the grieving family … unless that family is Jewish or Muslim.  We also know that cremation is a viable option, but let’s not preach about the sins of embalming and the environmental impact of a full burial to an Eastern Orthodox family.  Don’t be THAT asshole.

Ten.  Avoid Grief Timelines

Validate, validate, validate.  It’s okay if somebody is grieving years after they lost their spouse.  It’s okay if their grief expressions look different than yours.  Sure, some grief might need the help of professionals, but that doesn’t mean the grief is wrong or sick.  And because we validate, we never, never, never say, “Well, you should be over this by now!” or “you’ve been grieving for two years now, it’s time to move on.”  There is no timeline for grief, but there is no timeline for love.  We let love express itself and we validate that expression (unless that expression is cutting off the heads of cats and using those heads to make a mosaic of the deceased’s face.  At that point you call Dr. Phil.)

 

Sometimes I make listicles.  Sometimes I write books.  You can preorder the book variety by clicking the image below.

 

10 Subculture Funerals that Would Be Really Cool

One.  Nudist Funeral.

From an embalming perspective, laying out a nude nudist for a viewing would be difficult.  Displaying a naked body for a viewing would mean that I’d have to hide all my sutures through some expert waxwork, and I’d have to make sure the embalming fluid was evenly distributed to stave off any odd discoloration.  Generally, if an embalmer gets good distribution and an even color in the head and the hands, we’re good, because the head and the hands are the only parts of the skin visible for the viewing.  Even in a thoroughly embalmed body, there might be some discoloration in the feet, or other parts of the body.  But, it’d be a fun challenge and would demand that I’d do some of my best work.

Two.  Trekkie Funeral

“Beam me six feet down, Scotty”

Three.  A Furry Funeral

This would be the exact opposite of a nudist funeral because no skin would be showing if the deceased wanted to be embalmed.  If the disposition was cremation, we’d get one of those Teddy Bear Urns.

Four.  Cosplay Funeral

So many ideas!  If the deceased wanted to be Wonder Woman, that whole even distribution thing would come into play.  If the deceased wanted to be dressed as Nintendo’s Mario, it’d be easier.  The casket could even be made to look like a Mario Cart.  If I was working the funeral, I’d probably dress up as Gomez Addams or a suit-clad Dracula (“I vant to drain your blood!”).

Author: Fernando Branquinho
Author URL: https://www.flickr.com/people/aki_jazz/

Five.  A Drag Funeral

I’d totally dress in drag for the funeral, but I’d probably go for a David Bowie gender blending look to maintain a level of distinction.  Dressing a deceased person in drag would be beyond my capability.  I’d find a friend of the deceased in the drag world to help with the dressing and makeup, but Lord knows I probably don’t have enough makeup in the prep room to pull it off.

Six.  Juggalo Funeral

Nope.  Wouldn’t do this one.

Seven.  Steampunk Funeral

This would be so fun.  The things you could do to a casket to make it steampunk.  I’m getting excited just thinking about it.  You could make a really elaborate locking system with a weighted lid so that you’d click a button and the lid would lower and lock in place.  Click it again, and the lid would rise on its own.  But, if you’d make something this awesome, it’d be really hard to bury it beneath the ground.

Of course, this steam powered hearse would be an absolute must.

Eight. Neo-Victorian Funeral

This would be boon for me because the Victorians were known for their absolutely lavish funerals.  Sell alllll the copper caskets!  Do you want two Prometheans?  How about a vault made out of gold?

Nine.  Bro Funeral

I’d mix a little “extra tan” dye in the embalming fluid to give the bro that sun-kissed look.  I’d have the image of Ryan Lochte painted on the casket lid.  The deceased would be dressed in Southern Tide flannel shirts, and John Mayer would be playing during the viewing.  Once the bro slice would be buried, all his bros would pour beer on his grave while chanting his fraternity motto.

Ten.  Bodybuilding Funeral

ADD SOME PROTEIN POWDER IN THE EMBALMING FLUID!  Turn up the pressure on the embalming machine and get those arteries and veins distended.  Turn on the workout music for the viewing.  We’d only need one pallbearer who could deadlift the casket and snatch walk it all the way to the hearse.  But really, who needs a hearse when you have men who could throw

If you like my writing, you might like my book:

10 Things Funeral Directors Do to Chill

One.  We Hobby Hard.

Nearly ever funeral director I know has a hobby.  I know a clay sculpture, an antique car restorationist, a golfer, a dragster driver, a pole dancer, exercise fanatic, a colonial home restorationist.  Most everyone has a hobby, but it seems funeral director invest themselves heavily in their hobbies to provide a respite from their job.

Two.  We Party Harder.

I’m not a partier, so you can count me out of this group.  But I think I might be an exception.

A couple years ago a casket company flew me and about 20 other funeral directors to their casket-making plant.  During the day, we would walk around the plant and get all the details about how caskets are made.  During the evening, we’d be bused back to a lodge, a lodge that had an open bar.  There was a lot of libations, as seen by the numerous drinks sitting around us in the photo below.  A couple years before, my dad went on the very same trip and he said a couple directors got so drunk they were dancing on tables.  Good times.

I’ve always said, there are few things in life more interesting than a drunk funeral director.

Three.  We Probably Don’t Have Many Deep Friendships

The schedule of our work can be very rigorous. And free time can be hard to come by. Sometimes we don’t get to see our families and the little free time we have, we want to spend it with our partner and children. And sometimes we just have to say “no” when you invite us out to dinner or to a ball game. But don’t be hurt by our “no” and please keep asking us to visit with you. Funeral directors need friends too, it’s just not always so easy for us, or you.  Which leads me to number four …

Four.  We Tend to be Home Bodies

When I get home from a long day at the funeral home, I just want to stay there.  One of the reasons we like to stay home is that we’re often on call.  And nothing sucks more than going out only to be called back in.

Five.  Our Social Lives Tend to Be Invested in Social Clubs

Social clubs are perfect for funeral directors: there’s often drinks, there’s a bunch of potential clients and we don’t have to get too deep with anyone.  Win, win, win.

Six.  Gardening Is a Thing

Gardening is another win-win situation for funeral directors.  One, gardening is relaxing and peaceful; and two, you can do some gardening at the funeral home and make it look pretty.

Seven.  We Might Embalm Road Kill

When my dad went to funeral school, one of his classmates would embalm roadkill as an enjoyable pastime.

Eight.  Church(es)

Churches have the win-win situation like social clubs, although without copious amounts of liquor (unless you really imbibe the Lord’s blood).  I know a few funeral directors who frequent a couple churches because nothing spells “good business” like exploiting the Lord’s people.

Nine.  We Make a Bunch of Kids (and enjoying practicing)

Sex.  Most people like it.  But, I’ve noticed a proclivity in funeral directors.  They really like it.  Maybe it’s a way to let off steam.  Maybe all the death pushes us to do things that make us feel alive.  Maybe it’s just a great way to exercise without having to buy any exercise equipment.  But, yeah.  We’re a horny bunch.

Ten.  We write stuff

Sometimes blogs.  Sometimes books.  You didn’t see that sales pitch coming, did ya?

 

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