“You’re normal”

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Fragility is humbling and frightening

 

By Caitlin Kelly

It’s been a rough week, slowly recovering from my last radiation treatment — October 15 — and still fighting its cumulative fatigue and insane itchiness on my left breast. I was at my wits’ end, crying in public, (I almost never cry anywhere), just done.

I had a follow-up meeting with the radiation doctor, to be told I’d gained (!?) 10 pounds in six weeks and now needed blood tests to see why. This despite seeing my clothes fit more loosely and gaining compliments on my apparent weight loss.

Our GP, thankfully, saw us an hour later and did the tests; (I’m fine.)

But I started crying in his office, weary of all of it.

I apologized for being a big blubbering baby, ashamed and embarrassed by my inability to control my emotions.

“You’re normal,” he said, calmly and compassionately.

Jose, my husband, sat in the room with us, listening as I absorbed this pretty basic fact.

What, I’m not made of steel?

I’m…vulnerable?

Human?!

Kelly’s tend to be (cough) ambitious and driven; three of us won major national awards in the same month, when I was 41, my younger half-brothers then 31 and 18; I for my writing, they for business skills and for a key scientific discovery, (yes, the youngest!)

We tend to aim high, compete ferociously for as long as it takes, (each of my books, later published by major NYC houses, were rejected 25 times), and usually win, dammit!

We keep our emotions very close to the vest and keep small, tight circles of intimates. I don’t really do acquaintance.

 

Being weak, scared, in pain, exhausted and, even worse, letting others see us in this condition?

 

Terrifying.

I’m slowly getting used to it.

Compassion for my fragility is my new oxygen, as much for myself as the gratitude I feel for that shown to me.

 

 

Exposing oneself to millions

By Caitlin Kelly

Thanks to a reader here, I decided to pitch one of my earlier blog posts as a larger, reported story about medical touch — and my own experience of it — to The New York Times, and it ran today, prompting many enthusiastic and grateful tweets.

Here’s the link, and an excerpt:

It started, as it does for thousands of women every year, with a routine mammogram, and its routine process of having my breasts — like a lump of dough — manipulated by another woman’s hands and placed, albeit gently, into tight compression. It’s never comfortable, but you get used to it because you have to.

Unlike previous years, though, my next step was a biopsy, for which I lay face down, my left breast dangling through a hole in the table. Several hands reached for what’s normally a private and hidden body part and moved it with practiced ease, compressing it again into position for the radiologist’s needles, first a local anesthetic and then the probes needed to withdraw tissue for sampling.

I was fearful of the procedure and of its result and, to my embarrassment, wept quietly during the hour. A nurse gently patted my right shoulder and the male radiologist, seated to my left and working below me, stroked my left wrist to comfort me. I was deeply grateful for their compassion, even as they performed what were for them routine procedures.

 

It is decidedly weird to out one’s health status — let alone discuss your breast! — in a global publication like the Times — but it also offered me, as a journalist and a current patient undergoing treatment,  a tremendous platform to share a message I think really important.

 

I hope you’ll share it widely!

 

 

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Every patient needs to be touched kindly and gently

Life in cancerland: 18 tips

 

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By Caitlin Kelly

Some reflections on my having entered — as of June 2018 — a new and sometimes overwhelming world; if useful, please share!

 

You are not alone

You may certainly feel it as you reel with shock and try to make sense of what will happen to you next. My early June diagnosis of DCIS, (a sort of pre-cancer, even though the word carcinoma does mean cancer!) is one shared annually by 44,000 American women.

 

You will likely be in shock and feel utterly disoriented

Even if your prognosis, as mine is, is excellent, you’re stunned.

One minute, you assumed you were healthy, the next…you’ve entered cancerland, filled with sights and sounds and sensations both foreign and unwanted, that you may never have experienced.

What the hell is an aromatase inhibitor?

What are my eight tattoos for exactly?

How tired and ill will treatment make me feel?

 

You face a learning curve

Until you’ve had a biopsy, you don’t know what it feels like, during and afterward. Same for chemo and radiation and other things likely to happen. It’s all new and unfamiliar and a lot to process, physically, emotionally, intellectually — and, in the United States — financially.

 

Ask as many questions as many times, of as many medical staff — including technicians — as you need, and take notes

It’s complicated stuff!

Don’t ever feel stupid or intimidated or rushed or that your concerns are unimportant. Health care includes feeling cared for, not just surgery and medications.

 

People who have never had experience with cancer may behave in hurtful ways

Even with the most loving intentions, people may say things (oh, it’s not that bad!) or do things (send you books about cancer, unasked for) that can leave you even more anxious, scared or disoriented.

They may also tell you to “fight” and “battle” — when (if they don’t know the details) this might not even be necessary, or might not be possible. Ignore them!

This is not what you want!

 

Get off the Internet and listen to your MDs

The first advice my gynecologist gave me — who told me the news by phone — was to not start reading about this on the Internet.

I didn’t and have not and will not.

But I make my living seeking and processing vast amounts of complex information as a journalist — how could I behave this way?

Because I’m human and had to process enough new information as it is!

I also have avoided any detailed conversations about this unless with fellow patients, and not even a lot of that.

 

Some people will flee

This can be painful. It’s them, not you. As one friend (whose wife died of lung cancer) said: “You don’t know what their vulnerabilities are.”

 

Some people will step up unexpectedly

This is a great gift.

 

You will need to let some new people in, even when that feels weird to you

I find this difficult, as someone who’s always been quite private. But without allowing others to know the details of your situation and to comfort you, it’s too hard.

 

Some people will over-share and overwhelm you with their medical story

Shut them down.

This is not the time for you to hear, process and empathize with others’ details and fears. This is the time for you to focus on your needs. That may feel unkind, even brutal. Just do it.

 

If at all possible, find a medical team and hospital you like and trust

You will be spending a lot of time in their offices, possibly daily, weekly, monthly and for many years to come. If you like, trust and respect them, you will feel safe — literally — in their hands.

If you have doubts, find a team you feel good about; this is more difficult if you live in a rural area or have poor health insurance, I know.

 

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You’ll be seeing, and see and be touched by, a lot of people you have never met

That’s another stressor right there.

So far, I’ve seen more than a dozen different MDs, multiple technicians and been to two different hospitals. It’s a lot of new people, and different personalities, to cope with at once — in addition to your diagnosis and treatment.

As one friend told me, you’re spending a lot of emotional capital.

 

Ignore (most) others’ advice!

People will rush to give you all sorts of advice, leads, insights and tips. Everyone’s body is different. Everyone’s tolerance for pain is different.

Just because they or someone they know had a better/worse/horrific/painful outcome, this may not be your experience.

Don’t let their possibly frightening, unhelpful or inaccurate data bombard you while in a weakened physical or emotional state.

 

Educate a few people about your cancer — and let them do the talking for you

It’s time to conserve all your resources, especially time and energy. People who have not faced cancer, and your specific kind of it (what stage, where are you in treatment, invasive, recurring, metastatic, ER+, etc.) have no clue.

Having to keep explaining things to them can be too tiring and upsetting.

 

Do whatever comforts you most deeply

That might mean withdrawing from most social events to save your energy. Hugging your kids or pets. Knitting or playing video games or binge-watching TV, prayer and meditation.

 

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Rest as much as possible

Your mind and body are under assault. Naps are your best friend.

 

You don’t have  to be “brave”

People will tell you how brave you are.

You’re just doing what you have to to stay alive, even if (as I have) you might be fearful and crying a lot to a few people. Even a good diagnosis is enough to shake you hard.

 

Ask for help — and don’t think twice about it!

You may need help getting to and from medical appointments — tests, bloodwork, chemo, whatever. Even if you’re not feeling tired or weak, it is deeply comforting to have a friend or loved one waiting for you when you emerge from whatever it is you faced that day.

Having someone to drive you there and back is a real blessing. Ask for it, and accept it with relief and gratitude. Same for dog-walking, babysitting, food shopping, cooking, laundry.

Love is action.

 

The power of comfort

By Caitlin Kelly

When we’re feeling anxious, few things are as helpful as comfort.

It can be difficult for some people — private, feisty, super-independent — to open up wide enough to admit: “I need help!”

*cough*

But if you can, and if people respond with love, my oh my…

Self-soothing is also a crucial life skill.

It might be food or drink or a hug or a hand to hold.

 

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My pre-op nerves soothed  by a tiny rhino. (Good band name!) It went well.

 

It might be a stuffed animal, whether you’re six, 16 or 60.

It might be a kind word in the middle of a tough moment or a gentle touch.

It might be a bright bouquet of flowers.

It might be a lovely notecard — on paper, sent with a stamp — that arrives just at the right time.

It might be the loving presence of your dog or cat — or husband/wife/partner.

It might be a view out the window of something lovely that soothes you.

It might be your favorite music.

It might be a familiar poem or prayer.

In a time of some personal anxiety, I have been truly grateful for all of these, arriving from Dublin and Paris and London and Hawaii.

Some of you have commented here and some have emailed me privately.

 

Thank you!

 

Some thoughts on being touched

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By Caitlin Kelly

Touch can be soothing or frightening, a source of comfort or terror.

The past few weeks have made clearer — personally and politically — the importance of touch, physical and emotional.

Since telling people about my DCIS diagnosis, Jose and I have been deeply moved and touched by so many people, worldwide, young and old, friends, neighbors and colleagues, who have called and emailed to share their love and concern.

It’s been surprising to us — tough old boots of journalists that we are, working for decades in a fact-based business — to feel such a powerful wave of love and emotion.

We are very grateful.

The business of diagnosing breast cancer, (like other forms, perhaps),  also means your body gets touched by many strangers, compressed repeatedly, punctured with needles and having markers inserted and written on your skin. By the time of my surgery, July 6, I will have had seven different medical appointments and five different pre-op tests.

When a medical professional, who does this job every day, is kind and compassionate, communicating it through their gentle touch — the nurse who held my hand through my biopsy, the phlebotomist so skilled I didn’t feel a thing as she took my blood, the radiologist who stroked my other wrist even as he guided the needle — it is deeply moving and so comforting.

As someone who has always really lived in her head — a thinker, not a feeler — and a lifelong athlete who sees (and appreciates!) her body not for its size or shape or putative beauty — but instead for its strength, flexibility and resilience, this is all disorienting in the extreme.

Of course, grateful for a medical team we like, but it is so odd to suddenly be — as of course we all are, every day (even as we may deny it) — so corporeally vulnerable and now so…handled.

The larger political current context — of tiny children being taken from their parents and shut into cages by American officials — is so grotesque it would be a parody, if it were not.

From Arizona Family:

Dr. Colleen Kraft, the head of the American Academy of Pediatrics, said that she visited a small shelter in Texas recently, which she declined to identity. A toddler inside the 60-bed facility caught her eye — she was crying uncontrollably and pounding her little fists on mat.

Staff members tried to console the child, who looked to be about 2 years old, Kraft said. She had been taken from her mother the night before and brought to the shelter.

The staff gave her books and toys — but they weren’t allowed to pick her up, to hold her or hug her to try to calm her. As a rule, staff aren’t allowed to touch the children there, she said. [italics mine]

“The stress is overwhelming,” she said. “The focus needs to be on the welfare of these children, absent of politics.”

 

From Texas Monthly:

Sometimes mothers—I was talking to one mother, and she said, “Don’t take my child away,” and the child started screaming and vomiting and crying hysterically, and she asked the officers, “Can I at least have five minutes to console her?” They said no. In another case, the father said, “Can I comfort my child? Can I hold him for a few minutes?” The officer said, “You must let them go, and if you don’t let them go, I will write you up for an altercation, which will mean that you are the one that had the additional charges charged against you.” So, threats. So the father just let the child go.

An ER visit (I’m OK!) — and lessons for women

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By Caitlin Kelly

 

I awoke this morning at 4:40 a.m, feeling like my chest was being crushed.

I sat up in bed, trying to focus on whether this was a heart attack, knowing that symptoms are very different for women than men, and because of that often overlooked or ignored.

I had never had one, but knew to pay close attention to my body’s signals.

 

These include:

 

shortness of breath

nausea

dizziness

pain in chest, jaw, back, shoulder and arm

cold sweat

light headedness

 

I felt light headed and, although there is no history of heart disease in my family, I’ve been taking a low dose of cholesterol medication daily for a few years.

We have health insurance and a very good regional hospital that I know far too well from multiple orthopedic surgeries since the year 2000, only a 10 minute drive from home.

The roads were empty at 5:00 a.m. so my husband got me there fast and the  emergency room luckily, had only one other patient in their 30 rooms.

I was quickly given an EKG, X-ray and had four vials of blood taken. The nurse put in an IV line in case (as I did need) they would need to take more blood later.

The pain subsided and within a few hours, thankfully, I was pain-free, if exhausted.

I learned a lot.

If it had been (thank heaven it was not!) a heart attack, specific proteins like troponin-1 are released into the bloodstream as heart cells die. The first blood test showed I was probably fine, but the second one needed to be taken six hours after my symptoms — i.e. I arrived at the hospital by 5:00 a.m. but had to wait there til 11:00 for the second set of blood samples to be taken and results read and shared with me.

I also learned that if it had been a heart attack, I would have been sent to another larger hospital for the insertion of a stent.

I also learned that many people present at the ER thinking, like I did, they were having a heart attack but it was — as we think it was for me — a very bad case of acid reflux, an esophageal spasm. (Very unusually, I had eaten a very small snack at 11:15 the night before. Normally, I know better, and don’t eat anything later than 8:00 p.m. now.)

 

We are very lucky:

— we have good health insurance, so few fear of surprise huge bills for this treatment; we’ll see

— it’s a very good hospital, created by the Rockefellers who live a 10-minute drive east

— we didn’t need the cost of an ambulance (which, we hope, would have been covered); our town has a volunteer ambulance squad as well.

— my treatment was quick, respectful and detailed.

— the hospital was recently renovated so the ER, which we knew too well from a few broken fingers and my husband’s biking concussion, was very different from a few years ago. Now it’s attractive and very comfortable; I was a bit stunned to have a TV screen in the room with me. Each room had an internal privacy curtain and a sliding glass door and an overhead light that didn’t glare into my eyes.

It was so American — each room had a glass plaque by the door with the name(s) of the donors who gave the funds for it.

But I’m grateful as hell for their generosity.

 

If you’re female, please memorize these symptoms — and make sure your partner/spouse and/or family know them as well.

 

They’re easy to ignore or dismiss.

 

 

Health care is a right, not a privilege

By Caitlin Kelly

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If you move to the United States from any nation with single-payer government-run healthcare, you might be gobsmacked by what you encounter here.

You’ll learn new words and phrases like:

“pre-existing condition”, “co-pay”, “annual deductible” and “usual and customary.”

If you get a full-time job with benefits, you will be mostly preoccupied with how much medical coverage it offers you and your family, at what cost, and with what amount of deductible — i.e. how much more money you have to shell out after already paying a monthly premium for what is supposed to be full coverage.

It’s a bizarre, byzantine way to handle healthcare, because it puts millions at risk, as anyone following the current, bitter political debates over repealing and replacing the Affordable Care Act, (aka Obamacare), well knows.

If you work full-time for an employer who can afford to offer it, you’ll get health insurance through them, often heavily subsidized.

If not, welcome to free market capitalism!

My husband worked 31 years at The New York Times, as a photographer and photo editor. He retired from there, although we’re both still working. As a retired former staffer, he pays $400 a month for his health insurance. That, we can easily handle.

The company decided to save money by refusing this same subsidy to retirees’ spouses — so I pay $1,400 a month for the same plan. That’s $20,000 pre-tax I have to earn just to avoid medical bankruptcy — the single greatest cause of personal fiscal disaster in the U.S.

I’m a reporter, so as I debated choosing a much cheaper plan I queried the billing managers for two of our physicians. Both said: “Hell, no! If you like what you’ve got, keep it.”

They know better than anyone what a crazy and costly mess you can face if your cheap-o plan doesn’t cover something like — oh, you know –— the anesthesia for your four-hour surgery.

That surprise bill could be high enough to knock you out cold once more.

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My first steps with my new left hip, February 2012.

As an aging jock with orthopedic issues that have required multiple surgeries and a lot of physical therapy — the co-pays alone costing up to $60 a week — not having excellent coverage is a gamble I’m not willing to make.

 

As more and more Americans are forced into the “gig ecomomy”, i.e. self-employment or precarious, poorly-paid contract work, we’re forced into free-market pricing for our most precious possession — our health.

 

Yet I find it almost incomprehensible to read this, in the liberal New York Times:

When Representative Mo Brooks said it was unfair that healthy “people who lead good lives” should have to subsidize the insurance of unhealthier ones who presumably don’t, he bluntly raised an often unspoken question that runs through policy debates in Washington: Who deserves government aid and who does not?

Such proposals can be — and often are — couched in the language of economics, with advocates and critics calculating the efficacy of incentives, returns on investment and long-run savings. As Ben Carson, the Trump administration’s housing secretary, commented last week while touring publicly subsidized housing in Columbus, Ohio, “We are talking about incentivizing those who help themselves.”

But the judgment of who is deserving — as opposed to what is most effective — is at heart a moral one.

In pushing for repeal of the Affordable Care Act last week, Mr. Brooks, an Alabama Republican, suggested that people with pre-existing conditions deserved to pay higher premiums, because they had not “done things the right way.” That could include a cigarette smoker’s lung cancer — or a newborn’s congenital heart disease.

Couching this as “government aid” completely distorts the larger issue — are you really happy living in a country where you’re just fine — but millions of others aren’t?

This kind of self-righteous garbage, the “deserving”, makes me so angry.

Yes, those who live in a single-payer system do pay the costs of treating other people’s cancer (some are smokers!) and diabetes (some are obese!) and people who injure themselves while high or drunk or are torn to pieces by a dangerous, distracted driver.

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No one admires or wants to support stupid, careless behavioral choices.

But I’d rather know that everyone can get good care quickly than smugly snuggle into my personal bubble,  knowing for certain that others live in terror of losing their insurance or access to the drugs and care they need.

I grew up in Canada, to the age of 30, never once seeing or paying a medical bill. Nor have my parents, who still live there, in two different provinces, despite multiple surgeries and, for one, months of big-city hospital care.

I’m no fan of endless taxation. But a vast percentage of the U.S. federal budget goes to defense, waging endless wars against often undefeatable enemies.

And the outrageous rates I pay are giving health insurance executives’ massive salaries. I find that disgusting.

I believe healthcare is a right, not a rare privilege only granted to those who someone decides is “deserving.”

A life, saved

By Caitlin Kelly

CPR CLASS

Jeff is the man wearing the blue checked shirt and vest.

It happened on a suburban September Saturday afternoon.

Our co-ed softball team, who’ve been playing together for 16 years, was in the middle of a game when Jeff, a 61-year-old teacher, ran to first base — and collapsed.

“Don’t be so dramatic!” scoffed Paul, the first-base coach.

He wasn’t.

He was having a heart attack, in the middle of a ball field.

Luckily, one of our team-mates, a physician, was there and immediately knew — and knew how — to start chest compressions.

Police came, and EMTs and a paramedic and took Jeff to a local hospital, where he was placed in a medically induced coma.

He’s fine now.

He’s back to teaching.

He’s back to playing softball.

I wasn’t there that day, but it terrified everyone who witnessed it, helplessly, fearful that our friend would die in front of them.

He could have.

It happens.

So, wanting to be sure we’re prepared should it ever happen again, 28 of us paid $35 apiece to take a two-hour Saturday morning class last weekend to learn how we, too, might be able to save a life if needed.

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(Here’s a link to a video about how to do it.)

It was deeply sobering — you have barely four to six minutes to get someone’s heart pumping again before their brain is damaged.

There’s no time to waste!

You can’t panic.

You can’t want someone else to fix it.

You have to do it, and do it quickly and do it with strength and speed — 120 compressions per minute. You’re mimicking a heartbeat for someone who doesn’t have one.

We each practiced on plastic dummies, both child and adult-sized.

We also learned how to do the Heimlich maneuver, on adults, children, infants and (worst case) even ourselves if we’re ever alone and choking. (Lean hard against a chair back and push down on your diaphragm.)

We also learned how to use and apply the two pads of a defibrillator and how to do so safely.

It was a lot to absorb, physically, intellectually and emotionally.

“No matter what happens, you tried your best,” the instructor cautioned.

Not everyone will survive even the best rescue attempt — unlike a recent local save who needed 25 minutes of CPR to return, literally, from the dead.

After the class, there was a lovely, moving ceremony in the town’s volunteer ambulance garage, with the town mayor and the nine people: EMTs, two police officers and a paramedic whose quick action and excellent skills saved our friend’s life.

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Jeff gave a quick, graceful speech and served us a lemon cake at lunch to celebrate his second life.

If you’ve never learned CPR, I’d urge you to consider doing so.

It’s not as complicated as you’d think and there’s nothing worse than feeling helpless in a life-threatening situation.

(story told with Jeff’s permission!)

Need an affordable EpiPen?

By Caitlin Kelly

BUSINESS OF FREELANCING

Here’s how to find one, my story yesterday from Forbes.

The backstory, for those of you who don’t use or need one, is the staggering price increase for the EpiPen, an injectable device that pumps epinephrine into your system to address anaphylactic shock, an allergic reaction to nuts, shellfish, fish or any number of substances.

If someone goes into that shock, they need the injection within 30 minutes or they can die.

In the U.S. — whose entire healthcare “system” is run to wring the maximum profit from our inevitable physical needs — there’s only one company making them right now, Mylan, whose female CEO, Heather Bresch, the daughter of a Senator, no less, might be the most loathed individual in the country right now.

Knowing she has the market cornered, (as other competitors left the field), she spiked the price of EpiPens to $600 — a huge jump, and one that makes a lifesaving device unaffordable to many people.

(The company, now under tremendous public fire, is offering a $300 coupon.)

Imagine needing, (as some people do), three sets for each child: school, home and your vehicle, a cool $1,800 to start.

Oh, and Bresch earns $19 million for her.…ethics.

 

I’ve been following this story, not because anyone I know uses an EpiPen but because I’m so sickened by corporate greed.

 

I also grew up, to the age of 30, in a nation with strict government oversight and regulation of drugs, medications and device prices — so no one gets gouged.

That’s Canada.

I decided to pursue this story on Friday morning, and started at 10:00 a.m.

I put out calls and urgent emails to sources in the U.S. and Canada, racing the clock to get the story reported and written quickly; as a “trending topic”, I needed to get it posted as soon as I could, yet make sure I was producing a smart, well-written and well-sourced piece.

Social media saved my bacon — a request to a writers’ group I belong to on Facebook prompted a fast reply from someone who knew a physicians (!) who personally relies on EpiPens and who emailed me back quickly and in detail.

Score!

Working behind the scenes with my editor who, as usual and of course, I haven’t met, we discussed how to best present the story, an angle I hadn’t read anywhere else — yet.

We posted the finished story, about 1,200 words, by 5pm. (Good thing I’ve worked as a daily newspaper reporter. That kind of speed is normal for me.)

 

If you have time to read it, please share it widely; Forbes is a pay per view model, and this story offers an important way for people who need affordable access to get it.

He worked himself to death

By Caitlin Kelly

The world of journalism is full of competitive, ambitious, driven people. I’m one of them.

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But a recent death — that of 39-year-old New York writer Matthew Power — raises questions for me that remain troubling and unanswered. He died in Uganda while on assignment of heatstroke.

On Facebook I read, and joined, a discussion with other journalists why his decisions seemed normal. Not to me.

From Bloomberg Businessweek:

And yet there was something else, too. Matt may have been a free spirit, but he paid a New York mortgage and worked hard to afford it. Reviewing Matt’s itinerary—red-eye, trans-Atlantic flight followed by a seven-hour drive to the trailhead the day of his arrival, then joining the expedition on his second day in country—I got a shiver of recognition. I’d have made the same mistake. Not just failing to give heat the respect I do altitude. Failing to give it more time. Departing from New York, where there is never a moment to lose, there’s no way I’d think to schedule an extra couple of days—much less the week Casa recommends to top athletes—to let my body adjust. No one has that kind of time….

It took Wood, Beka, Florio, and the rest several hours to get Matt’s body to the village of Arua. They lost most of Tuesday trying unsuccessfully to secure a helicopter to transfer his body to Kampala. By the time of his postmortem exam on Wednesday morning—36 hours since he’d passed away early on Monday afternoon—his body had begun to decompose badly, making it difficult to determine whether a preexisting condition or other factors had contributed to his collapse. To Florio, at least, his death poses no great mystery. Matt, he says, failed to acclimate to Uganda. The temperature as his flight departed New York was roughly 20F—had been, it seemed, for months.

“No one has that kind of time.”

This was not a breaking news story. He was not covering a war or conflict or election, nor competing head to head against dozens of other reporters on deadline.

If you’re working for so little money or on so tight a budget or feel so frenzied that you can’t afford even an extra day or two so take care of your body’s very real needs, what purpose does this faux frenzy actually serve?

To save your editor’s magazine $100 or $200?

I didn’t know Power or his work or the person who wrote this story about him. Power seems to have been universally loved and admired, so my comment is not meant to disrespect him or his skill. Let’s be clear about that.

But his judgment — and the encomiums of others mourning this set of decisions to race ahead at all costs — is not something I wish to emulate.

In the vastly diminished world of journalism, in which pay rates are lower than a decade ago and well-paid assignments rare for many, pushing back to defend your needs is now seen as suspect, grabby and weird; I was recently offered a contract that would only pay me 25 percent of the original $4,000 fee if it didn’t work out as we all hoped.

It didn’t, after two full revisions.

But, knowing this can happen on certain sorts of stories especially, when I asked for a better deal, I was called “difficult.”

I hate this.

Freelancers live in a state of perpetual professional and economic vulnerability. Caving immediately to editors’ “needs” — typically for more profit — is considered normal behavior.

Power died a few days before I left for Nicaragua to work in a five-person team, interviewing locals in 95-degree heat in 12-hour days, sometimes in the remote countryside. We often worked in full sun, drenched in sweat, frantically seeking whatever shade we could find; there was little to be had.

One morning, after walking and climbing in full sun for a few hours, I told our group leader I needed to soak myself at the well to cool down even though we were supposed to leave right then. I refused, politely but firmly, and told him I needed to lower my body temperature. We left 30 minutes later, and didn’t miss anything we had planned to do.

Of course I felt embarrassed being so demanding — no one else asked for this. But I’d almost gotten heatstroke when I was Power’s age, while hiking alone in the Grand Canyon. I’d written about it and knew how serious it is.

It killed Matthew Power, a young, healthy man who had done many tough overseas assignments before.

We are human beings — not machines. We are fragile. We get ill.

We can die from making the wrong choices.

Pretending otherwise, that we are somehow invulnerable — that an extra few hours of rest or an additional night in even the most basic hotel to acclimate — is an undeserved or greedy sort of luxury is madness.

His death appalls me.

But reinforcing the idea that ignoring your own needs is the wisest and most admirable choice is even worse.