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Posts Tagged ‘illness’

When blogging about illness, what’s TMI? The NYT wades in — and angers many

In behavior, blogging, culture, domestic life, Health, journalism, Media, Medicine, women on January 16, 2014 at 12:49 am

By Caitlin Kelly

Maybe you’ve been following this recent firestorm?

The one in which Salon, a popular American website, called The New York Times’  former executive editor Bill Keller, and his wife, Gilbey’s gin heiress Emma Gilbey, despicable?

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Both of them wrote about cancer patient Lisa Adams, who has advanced breast cancer.

From Salon:

Lisa Bonchek Adams is a mother of three living with Stage 4 breast cancer. She blogs and tweets about what she is undergoing and the decisions she is making about her health; she does so frequently and to a large audience that’s rooting for her. And to a prominent husband-wife pair of journalists, she’s somehow offensive.

Bill Keller, the former executive editor of the New York Times, published an Op-Ed in that paper today indicating that Adams, in spite of the image of positivity and strength she generally broadcasts on her social media platforms, is dying and doing so in a manner somehow undignified; Keller draws a comparison between Adams and his late father-in-law. “His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.”

That “trench warfare” has, for Adams, included a variety of medical studies; Keller indicates that Adams’ personal decisions about her health, and her expressing herself online, somehow detracts from people who choose not to undergo experimental treatments or who choose to slip under with less of what is traditionally known as “fighting.” He even finds a Stanford associate dean who is willing to say that Adams “shouldn’t be unduly praised. Equal praise is due to those who accept an inevitable fate with grace and courage.”

Here’s an analysis piece from NPR’s blog:

the piece enraged a lot of Times readers, according to public editor Margaret Sullivan, that she heard a great deal of negative feedback, and who herself said “there are issues here of tone and sensitivity.”

Boy … you can say that again. By closing the piece with a piece about a dean who “cringes” at Adams’ alleged embrace of a “combat metaphor” (unsupported by any quotes from her own writing) and salutes those who show grace and courage, Keller implicitly suggests that to handle your disease as Adams has is one way to go. The other way to go is with grace and courage. And that’s very unfortunate.

Adams herself says that Keller, along with his wife Emma Gilbey Keller, who also wrote a controversial column critiquing Adams’ handling of her cancer (that was in The Guardian and has since ), have misrepresented the basic facts of her medical status, and Keller has already admitted he got the number of kids she has wrong. These disputes have been pretty thoroughly inventoried in a . And writers at outlets including and have been sharply critical of the need to explain to a cancer patient how to handle (and discuss) having cancer.

This is an issue I’ve thought a lot about — how much to write or blog about one’s illness or surgery or medical issues — and how much to never share beyond one’s circle of intimates. People, in my view, who are the ones who are most likely to have actually visited you and your family in the hospital or come with you to the chemo suite, perhaps.

One woman I know, barely, professionally, shared a lot of detail on Facebook about the effects of chemo as she was treated (so far, successfully) for breast cancer. But there was a lot I wish she had simply kept to herself.

She got a lot of emotional support, which I understand — why she craved it and why people offered it.

My mother had a radical mastectomy in 2003. She is alive. She has survived multiple cancers, including thyroid and a meningioma, a form of brain tumor.

In other words, I already live in daily fear of my genetic heritage and have little appetite to read anything about cancer.

That is not a judgment of people who do, but the effect of knowing too much firsthand already.

I get my medical tests and keep a careful eye on my own body and that of my husband.

I’ve already stared down plenty of doctors and Xrays and seen too much and heard too much. I saw my mothers’ very large brain tumor on the Xray and had to give informed consent for her; here’s the piece I wrote about it for Chatelaine, Canada’s largest women’s magazine.

Who am I to complain when I, too, have written these sorts of stories? They can, I know, be helpful to others and provide comfort to the ill and to their families.

A friend my age died of cancer in January 2006 and several men in my apartment building are currently fighting cancer.

It’s not that I don’t care about people who are ill. It’s the reverse. Instead, I find myself worrying about people I do not even know.

For me, that’s not the best choice.

I have really mixed feelings about this sort of thing — none of which suggests I’m right.

How do you feel about someone sharing a lot of very graphic detail on-line about their illness?

Getting older is a bitch — (and/or becoming one)

In aging, beauty, behavior, domestic life, life, seniors on March 6, 2013 at 2:05 am
Jazz Dance ¬ 0619

Jazz Dance ¬ 0619 (Photo credit: Lieven SOETE)

I had dinner recently with my friend G, a fellow writer. As we settled into a local restaurant for dinner — the music way too loud for comfortable conversation — we both kept saying “That music is too loud!”

Getting older is a bitch, kids.

What we really were talking about was how to handle the indignities and annoyances of aging.

We’re not that old, but we’re past 40, and things do start to look a lot different by then; friends have died far too young, parents are starting to become frail or ill and the endless mountain ranges of ambition we always planned to keep scaling are starting to just look exhausting.

“I’m going to be such a bitch when I’m older,” she said calmly. Me, too.

Because you’re running out of time, energy, strength and the endless determination to bounce back — from illness, divorce, a crappy betrayal, a crummy job.

Because, for better and worse, you simply have less stamina, physically and emotionally, for bullshit. If someone is petty or cruel or stupid or deceptive, in the old days I would have fake-smiled and sucked it up. Today? You’re gone!

Because…you can.

You don’t have to kiss as many butts as in your gogogogogogogogogo 20s and 30s, when you’re desperate to get into the right college/grad school/jobs/marriage.

Here’s a fab post from feminist site Jezebel about why your 30s are do-or-die, baby!:

What’s going on, I think, is the path-diverging choices that come with growing up. The thirties aren’t wildly different from your twenties, except for the part where the stakes feel so much higher. The carefree feeling of going out every night is replaced with a nagging voice that now reminds you of the repercussions, of what you should really be doing instead, and of the choices that may be slipping away, whether they are career, family, or fun. You are suddenly, irrevocably unable to waste time in the same way without chastising yourself.

By the time you’re in your 40s and beyond, you’ve done much of that, often several times (see: jobs, marriages.)

And we’re learning (resentfully!) that our energy has limits — even as she and I admitted to sitting at our computers for 10 hours a day when we write a major story.

I still, (thank God), can read without needing glasses. I still head off to jazz dance class and kick as high as some of the praying-mantis-thin chicks in their 30s. I plan to be back on the softball field this summer, after a three-year absence due to injury, surgery and recovery.

I’m also finally happy to see that my retirement savings — mine alone, even as a freelancer in a recession — have hit a number that actually makes all those years of scrimping feel worthwhile. I’d so much rather be in Paris/wear Manolos/drive a new car, but that growing number is deeply comforting.

Softball!

Softball! (Photo credit: * NightHawk24 *)

My role model is a woman on our floor, soon to turn 98. She recently fell, off the toilet, cutting her cheek and shoulder so badly she needed stitches. Her live-in nurse, who I see often, said, in awe: “She’s so strong!”

That’s what you need as you age. Strength: of character, of mind, body and spirit. A network of solid, loving friends. As much cash in the bank, and/or income, as you can possibly scrimp, scrape and save — start now, young ‘uns!

Aging also means less patience for whining or negativity. If you’re healthy, solvent and alive you’re way ahead of a lot of others starting their days with an IV in their arm or wondering when to finish making out their will or wincing in pain with every step.

By the time you’ve done a few decades, you start to feel like a grateful survivor, because you are.

The other night, for fun, I decided to Google a former beau, one of the most fun people I ever knew, a journalist-turned lawyer who fought hard for the rights of workers who’d been screwed over by their employers. Instead, to my shock, I found his obituary – dead of cancer at 57. It feels unimaginable.

It’s not.

Here’s a loooooong blog post on the topic, by an Australian blogger, with her 15 tips on how to age gracefully.

How do you feel about getting older?

Wallowing is never a good idea

In aging, behavior, blogging, Crime, domestic life, family, life, love, women on February 4, 2013 at 1:18 am
Death

Death (Photo credit: tanakawho)

Here’s a recent post chosen for Freshly Pressed that really hit a nerve:

And why does it still have to hurt so much?

When will it stop hurting?

Without question, I am over him. I no longer love him. I haven’t for a long time. I do not hate him. It would not bother me in the least if I never spoke to or saw him again. (Of course, this can’t happen (and I won’t allow it to happen), because we have Z and M.)

What I am not over is how much he hurt me. He’s not only hurt me, he’s hurt me in such a way as to have a long-term impact on any and all relationships I may have. He’s hurt me in such a way as to have a long-term impact on any and all relationships I already have.

When I need to talk to or just be in the presence of someone the most, I can’t bear the thought of it. I can’t bear the thought of confiding in someone else.

The depth of the pain is too much to bear.

The writer is a Canadian, a mother of two small children, whose husband cheated on her.

Keening  for seven years? Maybe she’s “ultra sensitive”, as this blogger describes herself.

And here’s a married, white, employed writer complaining in The New York Times that she is living in a friend’s ratty old house, at no cost:

I remind myself to have faith in something larger than the petty irritations of an old house. It’s been, as Dan has said, an “unconventional” way to take over a house.

That would be rent and mortage free, an opportunity millions of Americans would be happy to tackle.

In contrast, here’s an extraordinary story about a family whose 20-year-old son, Declan Sullivan, was killed at Notre Dame University in an accident. Their gracious response is inspiring, not tiring.

My impatience with whining is colored by my own experiences, and those of friends and family, who have coped from early childhood with serious illness, partners’ or parents’ premature death, mental illness, alcoholism, sexual abuse, repeated job loss, natural disasters.

Coping is a learned skill, as is resilience.

Canadian writer Paul Tough wrote a smart book on this subject:

Character is created by encountering and overcoming failure. In this absorbing and important book, Tough explains why American children from both ends of the socioeconomic spectrum are missing out on these essential experiences. The offspring of affluent parents are insulated from adversity, beginning with their baby-proofed nurseries and continuing well into their parentally financed young adulthoods. And while poor children face no end of challenges — from inadequate nutrition and medical care to dysfunctional schools and neighborhoods — there is often little support to help them turn these omnipresent obstacles into character-enhancing triumphs.

Jose and I, in our professional work as journalists, have witnessed horrific violence, death, war and fear for our own lives. People who choose our field know that working to tight deadlines against ferocious competitors means no one has time to coddle you, and insisting on it is a career-damaging choice.

When New York Times reporter Anthony Shadid died of an asthma attack while covering a story in Syria, his accompanying photographer Tyler Hicks carried his dead body into Turkey. Jose spent Christmas of 1995 in bitterly cold Bosnia, sleeping in an unheated metal cargo container, his holiday meal a packet of chicken soup, all he could find in the post-war madness there while working as a news photographer. He couldn’t shower for five weeks.

I faced my mother’s manic breakdown when I was 14, in Mexico, with very little help, and had to take care of a visiting friend, a girl my age who spoke no Spanish, while we figured it all out.

No one trains or prepares you for such moments. 

I recently had a long conversation with a new friend, a woman whose life has handed her a tremendous amount of personal stress, fear and worry, some of which is out of her control and ongoing. Yet she is chic, funny, smart, tough and resolutely un-whiny.

Clutching and sobbing tends to make me sigh and withdraw.

When the shit hits the fan, do you crumble?

Or deal?

Why getting sick in America is a really bad idea

In aging, behavior, business, family, Health, life, Medicine, politics, US, work on June 28, 2012 at 2:42 am
May_30_Health_Care_Rally_NP (641)

May_30_Health_Care_Rally_NP (641) (Photo credit: seiuhealthcare775nw)

One element of living in the United States sickens me to my core — the persistent inequality of access to affordable quality health care, something citizens of virtually every other developed nation take for granted.

Today the U.S. Supreme Court will hand down its decision on the constitutionality of what’s been called Obamacare, a mandate requiring all Americans to purchase health insurance. A CNN/ORC International poll released this month showed 43% of Americans favor the law, 37% think it too liberal, and 13% oppose it because it is not liberal enough.

I grew up in Canada, where health care, paid for through taxes, is offered cradle-to-grave by the government. Yes, it has some deficits, but everyone can see a doctor and go to the hospital without fear of medical bankruptcy, common here.

From this week’s New York Times:

When Wendy Parris shattered her ankle, the emergency room put it in an air cast and sent her on her way. Because she had no insurance, doctors did not operate to fix it. A mother of six, Ms. Parris hobbled around for four years, pained by the foot, becoming less mobile and gaining weight.

But in 2008, Oregon opened its Medicaid rolls to some working-age adults living in poverty, like Ms. Parris. Lacking the money to cover everyone, the state established a lottery, and Ms. Parris was one of the 89,824 residents who entered in the hope of winning insurance.

And this, on how confusing and frightening it can be to receive a fistful of enormous medical bills:

With so little pricing information available, expecting people to shop around for quality care at the lowest cost — something that’s not always possible in emergency situations — is also asking a lot of consumers. “I have always found a bit cruel the much-mouthed suggestion that patients should have ‘more skin in the game’ and ‘shop around for cost-effective health care’ in the health care market,” said Uwe E. Reinhardt, a health policy expert and professor at Princeton University, “when patients have so little information easily available on prices and quality to those things.”

President Obama’s Affordable Care Act, the health care overhaul law passed in 2010, tries to make some improvements (though the Supreme Court is expected to rule whether all or some of the law is constitutional this month). But while the law’s changes help you shop around for insurance policies — specifically through its new HealthCare.gov Web site, a one-stop shop that lists all of your insurance options in one place — it’s still unclear how effective the law will be for anyone comparing medical services.

On February 6, 2012, I had my arthritic left hip replaced. Thanks to my husband’s job, we have excellent insurance coverage, but I knew enough to do plenty of questioning, and negotiating, long before that gurney wheeled me into the OR to avoid nasty and costly surprises later. For example, I needed to make sure the surgeon would accept whatever fee my insurance company offered — decisions and prices I have no control over — but which would come bite me on the ass if I didn’t plan ahead.

I also had to make multiple calls to find out:

1) what the anesthesiologist would charge (about $3,800);

2) what my insurance would pay (about $1,000);

3) who would be on the hook for the difference. Me. (I told the billing manager I’d send my tax return to prove my income; $2,800 is a very big number for me.)

Jose, my husband, offered to look at the medical bills as they arrived, as they would only freak me out, not helpful post-surgery. The hospital — for a three-day stay, with no complications, charged $90,000. No, that’s not a typo.

Did they collect it? Probably not, but they routinely try for whatever they can get.

Then my surgeon billed $25,000. (Our insurance covered it all. Thank God.)

But…what if, like millions of Americans, I had no insurance?

Like my friend R, who is young, broke and lives without it. He recently slipped and fell on a wet sidewalk, needed an ambulance and needs physical therapy then surgery. Worst case, he’ll be paying off a huge bill for years, maybe a decade.

In my 24 years in the U.S. I’ve never lived one minute without health insurance; my mother has survived four kinds of cancer and I live an active and athletic life that also puts me at greater risk of injury. How ironic that being active, (fighting the great American scourge of obesity), can put you at risk of losing your shirt financially…

The cost of buying my own insurance, as a freelancer, left me with few additional funds for fun stuff like travel or nice clothes or shoes or replacing things in my home — air conditioner, dishwasher, computer — I needed and relied on. By 2003, it cost me $700 a month.

Health care is a right, not a privilege. We will all get sick or fall down or suffer a complicated labor or discover a tumor or suffer a heart attack. None of us is immune.

Many Americans cannot even purchase health insurance because they have — in that exquisite euphemism — a “pre-existing condition.” If you’re already sick, tough shit!

Seriously?

Life is a pre-existing condition. Americans, and their elected officials, must deal with this reality more effectively.

Is “Help!” a four-letter word for you?

In aging, behavior, domestic life, Health, life, seniors, women on March 15, 2012 at 12:07 am
English: "A Helping Hand". 1881 pain...

Image via Wikipedia

I’ve just experienced the most dependent month of my adult life.

Having had full hip replacement, returning home bruised, swollen and sore, I needed daily — even multiple times a day — help to do the simplest of things: eat, dress, pull socks, stocking and shoes on and off, get in and out of bed, bathe.

I left my parents’ home at 19 and lived much of my life after that alone. I’d been sick as hell alone in my apartment or traveling far away where I knew no one and didn’t speak the language, in places like Venice or Istanbul. My family has never been close emotionally or physically — it was made very clear to me what, pretty much whatever happened to me, physically, financially, emotionally, it was up to me to figure out, and cope with it.

I hated being weak, needy and vulnerable. Surprise!

I finally drove this week — and showered (alone!) and tied my sneakers (unaided!) — for the first time in a month. I went by train into Manhattan, our nearest city, and saw a movie with a friend and did some clothes shopping. It was all deliciously new and deeply pleasant.

But I didn’t, as everyone expected, sigh with relief at finally regaining my cherished independence.

I loved having Jose home, to chat with and bring me breakfast in bed. Friends drove an hour to visit, bringing home-cooked meals and fresh cheer. Two close friends were kind enough to chauffeur me to physical therapy a few times, otherwise a $20 cab ride each way.

I’d never been so fussed over or cared for, and it was lovely. Our front door is covered in get-well cards. We ate dinners for three weeks cooked and delivered by members of our church.

As I’ve been walking our apartment property in spring sunshine, I’ve run into a neighbor, a single woman my age who is fighting cancer for the third time. She’s reluctant to ask for help, but she needs it from time to time.

We all do.

We are, even in our vigorous 20s or 30s, as likely to be felled by a vicious flu or a broken arm or a sprained ankle.

We need help, whether writing a better resume or finding the perfect wedding dress or learning how to refinish furniture or bathe a baby. But, for some reason, we’re supposed to shoo away a helping hand.

No, I’m, fine, really, we insist. Even when we’re really not at all fine and would kill for a helping hand or two.

Maybe we’re afraid no one will step up and be reliable and do the hard work, even for a while. As someone who took decades here in New York to make lasting friendships, this offered a huge and powerful lesson for me. We’re loved!

Do you find it difficult to ask others for help?

When you ask, do you receive it?

Hospital Thoughts

In aging, behavior, family, Health, life, Medicine, men on June 29, 2011 at 11:30 am
A Greco-Buddhist statue, one of the first repr...

Image via Wikipedia

It’s been a nerve-wracking few days.

The sweetie needed some tests, and one of them involved a CAT scan with a dye injection. (Looks like he’s OK, thank heaven — only a kidney stone. I shouldn’t say only, as everyone who’s had one or knows someone who has says it is excruciating.)

I’m the one who’s usually lying on the gurney/MRI platform/X-ray table. We’ve been back and forth to our small local community hospital so many times in the past decade — thankfully, for nothing serious — we’re on a first-name basis with the doctor who works the overnight shift at the ER. On one of our last visits, he asked: “So, whose turn is it now?”

It was my turn, then, with a fever of almost 104 and a spot on my lung so dark and ominous he drew the curtain and said it might be lung cancer. The sweetie, a photographer by trade, asked to see the films, as he can read negatives with the skill of a radiologist, even if he doesn’t know what he’s looking at.

It turned out to be only pneumonia, but it still meant three days on an IV, sharing a room with a 95-year-old who startled awake at midnight, sat on the edge of my bed and tried to pull out her tubes. I coughed, as one does with that disease, so hard my body ached from exhaustion; I wrote an essay about it for The New York Times.

This time it was my turn to watch the phlebotomist wheel in her cart and overhear her explaining to him how his body would react to the contrast dye. I kept him company as long as I could. In our 11 years together, I’d never seen him lying flat inside a diagnostic machine, grateful for this and shocked at the sight.

I sat and waited, staring at the lavender wall trim and burgundy cupboards and a cheerful British print on the opposite wall, aware for the first time how soothing it all was and how much I needed it to be so.

My last ER visit was January 2009, the beginning of a five-month odyssey to figure out my painful/arthritic/inflamed left hip — I was in so much pain I could barely walk and I do remember admiring the handsome design of our shiny new ER.

When I’m scared, and I admit to not loving going anywhere near that hospital by now (three orthopedic surgeries since 2000, a hip replacement my next, and more than five times to the ER, for everything from a broken finger to a mild concussion the sweetie incurred in a biking mishap) I do not want to be soothed or distracted by television. Old copies of People don’t do it for me either.

The sweetie, a devout Buddhist, did a lot of deep breathing to stay calm.

I’ve spent a fair bit of time around hospitals, thanks to my mother’s various illnesses, which included a mastectomy and a brain tumor (both of which, 10 years apart) she survived. I’ve seen her in hospitals from London to Sechelt, BC, and have learned to make medical staff crazy when necessary with my direct questions and insistence on information.

We’re glad we have a good hospital nearby, deeply grateful for good health insurance and generally good health, and knowing we can get there within a 10-minute drive.

Wish we didn’t know it quite so well!

When Your Parent Needs A Nursing Home

In behavior, children, domestic life, family, Health, life, Medicine, Money, parenting, women, work on February 8, 2011 at 2:56 pm
The new driveway up to the nursing home.

Image via Wikipedia

Life, as you have known it, is done.

I’ve been facing this sudden reality for about the past two months. My divorced mother, 76, who lives in a very far away city in Canada — I am just north of New York City — now must move into a nursing home. I have someone there sharing power of attorney with me, but even so it has become an unpaid, draining, overwhelming, full-time job demanding almost daily decisions, all of them with major consequences.

None of which are anything I have ever faced before or have a frame of reference for.

I’m the only child.

If you have not yet entered this specific obstacle course, a few things you need to think about:

Does your parent have a will? Do you know where it is and who is the executor?

Have they, in advance, designated a power of attorney?

Do they, or you, have a written inventory of all their belongings and which they might want to keep when they have to trade a home for one room?

What do they want to do with all ephemera — photos, letters, documents? Have you or they sorted through it and identified what is important or of sentimental value? Identified who’s who in the photos?

Who will handle your parent’s affairs financially?

Do they have long-term care insurance? (Do you?)

Have you discussed any of this with your parent?

Do you have anyone, like a geriatric care manager, to help you if you are trying to deal with all of this from a distance?

Here’s what we’ve faced:

She fell in the hospital, breaking her hip in the emergency room

Surgery to repair her hip and months of rehab and physical therapy to regain strength and mobility

Another fall in the hospital, which protested there was no way they could prevent yet another one

Bowel surgery and a colostomy

She has COPD and heart problems as a result

She has early, for now, mild dementia and trouble with short-term memory

The learning curve is vertical!

These are just some of the many people I’ve spoken to in the past three months:

Two nurses, doctors (at least four, so far), physical therapist, occupational therapist, nursing home staff at four homes while seeking a suitable and available bed, hospital social worker, hospital risk manager, attorney, realtor, notary for the buyers for her apartment; auction house coming to appraise and sell her things; Salvation army for picking up the rest, movers to move her into the nursing home, airline (for my flight); car rental (for my visit), UPS (for packing and shipping back here whatever I can take or keep), bank staff to try and arrange handling of her finances…

The only thing keeping me sane is knowing many other women also going through this hell or who have already gone through it, and who kindly offer compassion, humor and advice.

It is a maelstrom of grief, fear, sadness, confusion, anger, frustration, loss. And the cost is staggering — $6,000 a month for one room. Yes, a nursing home room is definitely much cheaper elsewhere, but she is not physically able to move and emotionally would not want to as her friends are in this city.

Have you been through this?

How did you cope?

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