“The Bright Hour: A Memoir of Living and Dying” was published posthumously by Nina Riggs, a woman who died at 39. Her genetic legacy included writing talent:
My great-grandparents on my dad’s side are Emersons, and [Ralph Waldo Emerson] is my great-great-great grandfather.
It also included what can only be called “white privilege,” e.g., the closely-knit extended family of aunts, uncles, and cousins who’d built successful lives, the multi-million dollar family beachfront retreat on Cape Cod, etc. But the heritage is not all positive:
“My paternal grandfather had breast cancer.” That tends to make whoever is charting my medical history look up. “He had a radical mastectomy in the 1970s. And his sister had it, too—she died in her fifties. And one of his nieces. And his daughter—my aunt.” I’m sitting in the genetic counselor’s office as she madly sketches out my family tree on a sheet of paper. There are squares and circles, the cancer victims marked with X’s. Lots of X’s. On my mom’s side: cancer in both her parents, although not breast. An early melanoma in her sister. And less than six months after this conversation, my mom herself will be dead from a blood cancer called multiple myeloma.
Her son also carries some unfortunate genes:
“I really wish I didn’t have to say this, so try not to freak out.” “Okay,” I say again. “I think Freddy has developed diabetes.” John has been a type-one diabetic for nearly twenty years. They said it’s not genetic. . . . “Okay.” I absolutely cannot think of one other thing to say. “I noticed he was drinking a lot from the water fountain at the library, and it reminded me of when I was diagnosed. So I tested his blood sugar on my meter. It’s off the charts.”
If you want to know how a nation can spend nearly 20 percent of its GDP on health care…
First ultrasound ever: I’m sixteen weeks pregnant. The darkened room, John standing at my side. We’re watching the tech—then a doctor who enters from another room, then another doctor—wade again and again into the ocean of my belly, find our growing boy there—his spine curving like driftwood, his thunderous heart. It’s the strangest thing we’ve ever seen. We can’t stop watching the screen/ ocean. Him. But they’re taking too many pictures. Too many measurements. His feet. His legs. His brain. His heart. His feet again. No one is talking at all, until suddenly someone says, “Well, I guess by now you know something is not quite right.”
Talipes equinovarus, they tell us after the scan—club foot.
Later at home, John bans me from obsessing on the Internet, but agrees to read me a list of people he finds born with club feet. It turns out it’s not just obscure, misanthropic rulers. There are athletes on the list: Troy Aikman. Kristi Yamaguchi. Mia Hamm. Freddy Sanchez—who won the batting title in 2006 for John’s hometown team, the Pittsburgh Pirates, and for whom the shapes in the ultrasound-verse will soon be named. Eight years later—leg casts, orthotic brace, surgery—we watch him round the bases, slide into third.
[Regarding the author’s mother] Eight years of cancer. They told her she had five years when she was first diagnosed. New drugs keep coming though, and some of them have worked—for a time. A stem cell transplant. Chemo. She got to see my brother get married and watch my kids grow. Multiple hospitalizations, endless courses of steroids, blood and platelet transfusions, five bone marrow biopsies, daily debilitating nausea and diarrhea, three failed clinical trials. She’s been keeping track: five days of not feeling well to every two where she’s basically okay.
Those of us whose health problems are minor are a significant annoyance:
My friend Ginny who lives down in Charleston has the same kind of breast cancer as I do, and we like to text each other with ideas for a line of morbid prefab cancer patient thank-you cards to real and imaginary people that Ginny calls the “casserole bitches.” She’s a trust and estates lawyer, so she’s an expert in casserole bitches and their eyelash batting.
I text Ginny: “You are fully entitled to slap the next person who tells you that God only gives us what we can handle.”
One day Ginny texts: “Here’s a new card for our collection [thank-you cards for helpful female friends and neighbors]: Thanks so much for coming to visit and fucking my husband. I needed a divorce to keep my mind off cancer.” The visitor in question is one of her close friends from college who has come to help take care of her during chemo. A new level of casserole bitch. She catches them in the living room one night when she gets up to get a glass of water. Ginny goes into lawyer-warrior mode. She makes them sign affidavits before they even get up from the fold-out sofa. [reference: South Carolina family law]
[after the author’s mother dies from her cancer] Ginny writes: “It’s such bullshit that there are plenty of Joan Crawfords and assholes like my husband running around among us and your mom is not.”
On being a dying parent:
Downstairs, the boys gaze at a screen on the old futon in the playroom. We will figure out what to do about them soon enough. They probably already know what’s up and are waiting for us to figure out how to say it. Their very existence is the one dark piece I cannot get right within all this. I can let go of a lot of things: plans, friends, career goals, places in the world I want to see, maybe even the love of my life. But I cannot figure out how to let go of mothering them.
A retired rabbi—the friend of a friend—writes me an email out of the blue about how he lost his mother when he was nine years old. In the message, he lists all the things he remembers about his mom and all the ways she remains in his life: her favorite flower, the books she read him, her sense of humor. “She is far from a hole in my life. She is an enormous presence that can never be replaced.” His words are a gift that I pull out some nights and let swirl through the room, brush over my skin like a tincture.
In the book, but off-topic: Don’t open your home to pit bull mixes:
Charlie and Amelia have just arrived in town. They’ve decided to escape the Western Mass winter and come live down here for a little while at my dad’s house while Charlie works on finishing his dissertation. They have a new dog—Luna—a young, bouncy pit mix that likes to get in the middle of everything. She hardly ever stops moving, and she’s still recovering from a run-in over the summer in the woods with a skunk. Charlie and Amelia can barely control her. The second night after they move into town, Luna and my Dad’s geriatric fat beagle Clyde get into a nasty fight over some food, and Luna rips Clyde’s face up pretty badly: chunks of flesh torn from his snout. [Clyde has to be euthanized.]
What do we share with cancer patients?
I am reminded of an image that one of my cousins—a woman who lost her husband to a swift and brutal cancer last year—suggested to me recently over email: that living with a terminal disease is like walking on a tightrope over an insanely scary abyss. But that living without disease is also like walking on a tightrope over an insanely scary abyss, only with some fog or cloud cover obscuring the depths a bit more—sometimes the wind blowing it off a little, sometimes a nice dense cover.
A tough philosophy to embrace, but perhaps necessary:
It’s past midnight, and we’re lying in bed. “I just can’t wait for things to get back to normal,” says John from his side of the moon. “I can’t handle you saying that,” I say after a silence, even though I know he isn’t trying to fight. “Thinking that way kind of invalidates my whole life right now. I have to love these days in the same way I love any other. There might not be a ‘normal’ from here on out.”
More: Read “The Bright Hour: A Memoir of Living and Dying”.
I want to read this heartbreaking account. Every mother’s worst fear — to be diagnosed with terminal cancer before one’s children aren’t yet fully formed & launched. But lately have read more book reviews (such as yours) than books . . .
5% of the US population drives the vast majority of america’s $3.2T/year in healthcare costs. https://www.theatlantic.com/theplatinumpatients/
their average costs are about $98.5K per year (about $5200/year for everyone else.). dealing with these people would solve A LOT of problems.
america has 983 public state/local hospitals, the veteran’s system (vha) with another 168 hospitals, and 1400 clinics, and over 1000 “free” clinics. why don’t we give these facilities medicare/medicaid’s $1.2T budget in exchange for providing care on a most need basis?
if we did that we’d eliminate billing, thus lowering healthcare costs by 15-30% according to the research i’ve seen. that means spending would drop to between $1.12t-$1.36t for these people.
dsgntd_plyr.
Do you want to fight oppression by “top 5%”? The issue is you never know who is in it. 5% of US population could match population of Stalin’s gulag labor concentration camps in Siberia of course. The real problem is corrupt socializing mindset that already through obamacare led to huge increase in specialist and procedure wait period, overall reduced accessibility of preventive medical care through long wait times and incredible high deductibles that prevent people from using medical services and increased overall expenses that getting deposited in politicians’ cronies fiscal nets. Your suggested single payer will just farther push US healthcare into decline. The good first step is complete repeal of obabamcare, aka “ACA”
And another ACA stoogeism: proliferate of ‘preventive’ insurance plans that satisfy Obamacare requirements and cover no hospital stay or medical treatments! Just pay cronies money and you are off the hook!
dean wrote: Do you want to fight oppression by “top 5%”? The issue is you never know who is in it.
that’s why the facilities are open to *anyone*, but the doctors prioritize who gets care by preexisting condition. this system already exists. it’s called the veteran’s health administration, but it’s only open to 9M people.
dsgntd_plyr #5, news are swamped with tragic stories of service denial, dead veterans still on the waiting list, firing at VA etc… The only veterans I know who are used to be happy with veterans medical benefits were healthy ones who never needed VA hospital services and used their insurance for regular civilian doctor appointments, and it was before VA medical insurance payments were hiked by previous administration, retired veterans do not tend to make big $$$. Clearl that the system that works poorly for 9M people is not scalable for 330M people.
Anyone who owns a pit bull or pit mix has mental issues they need help with.
They are terrible animals.
@dean,
those “news” stories look at extreme cases, because they get clicks. the vha has been studied for years, and has satisfaction ratings higher than the private sector.
my proposal wouldn’t nationalize healthcare btw. private entities, including for-profit institutions, could participate.
fun-fact. total hospital expenses are $936,531,524,400. total medicaid/medicare spending is $1.2t. http://www.aha.org/research/rc/stat-studies/fast-facts.shtml
adopting single-payer for hospitalizations would shave 15%-30% off expenses by lowering administrative costs, so $656b-$796b. this means at-least $400b leftover for primary-care and medications for low-income people.
“adopting single-payer for hospitalizations would shave 15%-30% off expenses by lowering administrative costs, so $656b-$796b.”
btw the vha budget is $65b, with 9m users. $65b/9m = $7222.22. per-capital healthcare spending is $10k. ($7222.22-$10k)/$10k= 27.78% cost reduction using the vha system rules.
this means a drop in spending to an average of $71,138.97/year from ~$98.5k/year among high cost patients.
16m*$71,138.97 = $1.14T. so we could cover every high cost patient, thus lower insurance rates for everyone else. this would be cheaper than obamacare, so we could then cut taxes!
Since 19*5200 = 98800, I would, perhaps pedantically, say the 5% cause half of the costs, not the vast majority of them. I’d alos estimate that my medical bills, including medicines, normally are perhaps 1/10th of $5200, or less. Last year they were far less.
I didn’t read the article but it might be interesting to drill down into the 5% to, e.g., see how many stay there and why.
Why is it that this woman’s heart-wrenching description of her own dying brings on an argument about how her care should be paid for? What kind of people are you?
I’d like to read this book. I have (in my seventh decade) way too many friends who are no longer here, including people who have had to watch their children die even as they suffer their own treatment for cancer.
@Tom
There’s a 50% turnover each year.
Tl;Dr summary:
1. It’s disproportionately the elderly
2. The treatments usually work because most five percenters report good health
3. Non-healthcare reasons often cause health problems. For example, no transportation to get to a doctor’s appointment, so a small problem becomes a big problem
4. 97.9% of the five percent have health insurance versus 89.2% of everyone else.
I believe Phil has mentioned this several times: we are living longer but not really with any quality of life, despite medical advances.
And I still ask why anyone wants a pit bull?
Dsgntd_plyr, the made-up statistics you provided is amusing. Why would anyone fire officials from better than average business, especially in government where incompetence firing are unheard of? In reality different kinds of ‘financial’ ‘health’ ‘engineers’ (in reality not able Einstein wonna bees who crafted themselves a niche in incompetent accounting and who either not able to become CPAs/CFAs or not wanting hard work and free market competition associated with it and hiding under premises of academia) have negative credibility after massive failures and corrupt practices of ACA. Those who pushing their imagined and treif based social agenda, either due to unbalanced diet and exercise or unwillingness or inability to work, and in the process screwing the most able medical system on earth should just relax and ACA should be rolled back
We are living longer and healthier lives full of fun and adventure. See below for my 96 year old friend who skis 100 days a winter and hikes all summer.
http://www.tahoedailytribune.com/news/local/at-96-martin-hollay-still-skis-at-heavenly-in-lake-tahoe-now-the-community-wants-a-run-named-after-him/
@Bill: Mr. Hollay’s story is inspiring indeed. While we can all aspire to that, genes play a huge role, and even some with good genes like the 97 yo at my former gym, b. 1920 in Vienna, put on skis by age 3, escaped from Nazis (Jewish family) in 1939 to live in Strasbourg, France, thankfully made it to USA within another year or so where he earned his MD in psychiatry (one Jean Kafka), had to give up skiing in his 80s, even though he owns a ski chalet in Utah (where he still goes with his wife, children & grandchildren). Most of us won’t be biking/skiing/running in our 90s but here’s hoping I’m wrong.
sorry — got details wrong — got to Strasbourg at age 5 or thereabouts with his mother & sister (his father passed away in Austria), and got to the US at age 19 in 1939 to eventually earn his MD at Emory U Medical School. He worked with a French-speaking trainer at my gym where I got to know him. He is hard of hearing, but the trainer had him doing running on a wooden floor and lots of stretching. Our gym closed in June, but sure enough ran into him at another gym in July where he and his wife (in her 80s) had joined.
@dean,
huh? made up statistics?. check my hospital data with the aha, my vha data at the vha’s website. kaiser/cms has all sorts of medicare/medicaid data i used:
http://www.aha.org/research/rc/stat-studies/fast-facts.shtml
https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/NationalHealthExpendData/NHE-Fact-Sheet.html
here’s the va’s 2018 budget request: https://www.va.gov/budget/products.asp
$70.8b would go toward medical care
i agree about obamacare being a bad law, and people having poor health because of diet and exercise (i support junk food taxes, and insurance NOT covering self-inflicted ailments).
i’m simply pointing out reallocating resources solves the universal coverage problem AT LOWER COSTS
@dsgntd_plyr see today’s WSJ for good analysis of the effect of soda taxes in cities like Philly which have managed to implement them. I would support junk food taxes if high-quality fresh fruit & other comestibles weren’t so expensive relative to mass-produced junk food (even with the tax levied). When Michelle Obama provided Red Delicious apples in lunchboxes (often mealy from storage), the kids were observed tossing them; but if they had been given $3/lb. Honeycrisp apples or grapes or peaches from WFM, Michelle might have effected some change in children’s diets. Affluent people who buy Naked & Odwalla drinks shouldn’t judge those who can only afford artificial drinks sweetened with corn syrup. Your proposal that self-inflicted ailments not be covered by insurance is intriguing — are you planning to include opioid addiction, when some of these folks have chronic pain which doesn’t seem to respond to other treatments??? You’re referring to Type II diabetes, I assume, so there would be a lot of imposed weight management, then?