How to Grieve

The bereavement fair is coming to a location near you

Grieving is a process. The psycho-babblers describe five stages of grief, which they label Denial, Anger, Famine, War, and Conquest. Or something like that. It really doesn’t matter, because after this generalization, they go on to say that the stages are totally different for everyone, which is a pretty effective disclaimer. When my wife died I was vaguely aware of all this, and I knew that I would go through a series of changing emotions lasting indeterminate amounts of time. What I failed to appreciate was the extent to which this process has been dissected, defined, addressed, and monetized by the medical establishment and its metastatic associates.

My foot got hurt a couple of weeks ago, so I made an appointment to go see Dr Oops1. It was the first time I had seen her since my wife’s passing, and she hugged me while collecting her co-pay. In the examining room she poked at the sole of my foot for a while and said “That’s weird”. Then she told me it should get better by itself and to see a podiatrist if it didn’t. On my way out, the nurse gave me a smile and two sheets of paper. One was a referral to a podiatrist in Pacifica. The other, in standard operating procedure format, was entitled “Grief (Actual/Anticipated): Home Care Instructions”.

The document began by undermining its own existence with a paragraph explaining that grief is natural and does not require medical treatment. I surmised that there must exist aberrant grief conditions that do, in fact, require some medical intervention because the document went on for a full page after that. Indeed, some of these situations were listed:

Contact your doctor if you have any of the following problems that last for 2 or more weeks:

  • You feel sad a lot or cry all the time.    I have to say I found the prescribed interval for chagrin to be a bit meager. I have been sad for far more than two weeks. I haven’t told the doctor, though, because it seems ridiculous to dwell on it. And I really don’t want any Prozac.
  • You have trouble sleeping.     Sleeping has not been a problem. Waking up is where it gets hard.
  • You find it hard to concentrate, make decisions, or remember things.     This, too, has been going on for more than 2 weeks. More like 20 or 30 years, actually. But Dr Oops knows about this already: she insisted on putting me through some kind of cognitive ability test one morning last summer, before I’d had coffee. She gets a remittance from Medicare.
  • You change how you normally eat.     My refrigerator’s content is now comprised of a half dozen eggs, a sixpack, four peaches and a supermarket roasted chicken. Also 12 bottles of mango protein shake.
  • You feel guilty about the death or loss you have suffered.    I’ve discussed this previously.
  • You are using alcohol or drugs to help you cope with your loss.     I use alcohol or drugs to cope with everything. That’s what they’re for. If I told my doctor, I’d just get hassled and given a prescription for some other drug, something made by Lilly and stepped on by CVS. Who needs it.
  • Be sure to contact your doctor if you think about killing yourself    It’s good to know she’ll be there for me. Suicidal urges must be managed on an appropriate schedule, however. If I call Dr Oops’s office between the hours of 12 and 2 on weekdays, I will be informed that the staff are at lunch. If I call on a weekend, I will hear recorded laughter.

Curious about where my small town doctor was sourcing her prose, I looked more closely at the paper I’d been handed. In the margin there was the web address of a company called athenahealth (“At athenahealth, we put people first”). Apparently, they are Oops’s chosen provider of electronic health records and home care instructions, including grieving protocols for those having recently lost a spouse, job, or pet.

It is in the nature of businesses to differentiate themselves by offering their customers more services, especially ones that can be culled from government databases and cost nothing. It is in the nature of entrepreneurs to fill niches, offering to those who grieve — and to those who know them — every conceivable solace. And so we have grief counselors, support groups, grief camps, sleeping pills, and home care instructions to go along with the cards and tissues.  And these are offered by companies and charitable institutions, and it is in their nature to hire management and staff and to protect their economic turf and thereby their salaries. And so, out of death, an industry is born.

At this point I received a phone call from Dr Mimi, wife’s failed oncologist. My nosey eldest son had contacted her and voiced concern about my mental state, my ability to cope with engrievement. What an asshole. Dr Mimi wanted to reach out to me, all according to best practices, and to offer me the resources of her formidable university. Normally I would have blown her off, but the word “resources”, unexpected in this context, somehow made me think of Australia, which is being exploited by the Chinese according to an article I had been reading while practicing grief unassisted. In private. This left me slightly confused, and I agreed to have her send these resources, whatever they might be.

They turned out to be links to some websites, online grief clearing houses. I felt compelled to explore.

The first was an outfit called Kara (“Our guiding value is empathy”), with the succinctly delineative web address kara-grief.org. Kara sends out volunteers to support dying patients and survivors in the Palo Alto area. I’m not sure what the volunteers do, actually, but it seems all to be based on something called the Shanti Project, so I think mantras must be involved.

I moved on to Pathways, a provider of home health and hospice care. Pathways publishes a quarterly newsletter, “Seasons Through Your Grief”, for those who want to be kept up to date (on grievous matters?). I learned that Pathways partners with eCondolence.com, “the premier resource for condolence, sympathy, and loss-related content and gifts”.

These outfits offer counseling, workshops, support groups, memorial events, and more. There was also a link for Hospice by the Bay, a UCSF affiliate which is currently advertising for graduate students to apply for bereavement internships. Send an email to Human Resources.

For myself, I have no use for most of these professional outlets. I’ll keep my distance from the ghouls, thank you. I’m not a social person, nor do I choose to grieve in the presence of others, to elicit rote responses, however sincere or adept. The thought of support groups is revolting. Why would I want to rub elbows with a bunch of other people who have just suffered a loss? Why would I listen to their stories? Fuck them.

The dynamics of the market affect everything in society, of course, and it’s interesting, if depressing, to see them play out here. Functions once considered religious have been deconsecrated and market segments are being contested by lay, medical interests. But why go to a doctor for something that is natural and does not require medical treatment? Why not apply the AirBNB model? Locally sourced solace. Through a central booking service, empathetic individuals could set up shop, offering a kind ear, platitudes from a list provided by the franchisor, and perhaps access to a room with yoga mats. All for $75 an hour billed to your insurer. Everyone makes out. Some would specialize in clients grieving for pets — a lucrative market segment, as the shorter lifespans offer potential for repeat business. Others might choose to concentrate on those in the less violent stages of grief, avoiding clients who might kick walls in anger and risk hurting their own feet.

1 The naming of Dr Oops is described here.

 

Advance Directive

Do Not Resuscitate

160331_1533 As you walk past the nursing station you see them. The patient binders. They contain medical records, test results, insurance papers, the documents describing these failing bodies. And in each one a sheet of red paper, the advance directive. Instructions to follow in case of a critical event. The name of the party responsible for making these decisions if the patient is unable. Last week, that was you.

There are three questions on the page. Should the heart be forced to beat if it stops? Electric shock. Massive pressure. Should a breathing tube be inserted if the patient cannot breathe? Should a feeding tube be used?

You had discussed this in the past of course, the two of you, as you filled out these papers. An abstract exercise. There was agreement: no heroic measures. But a grey area, as well: if there is a chance of recovery, a normal life, maybe then…

Last week it became terribly real. She lay there babbling, unable to respond. 911. You followed the ambulance to the ER. They told you to send for your kids.

You already knew she had metastatic cancer. At first the chemotherapy had seemed to work, granting a brief reprieve. Then the tumors came roaring back, causing blood clots and a previous trip to the ER. She had just started treatment with a new class of drugs, only a few days before. No time to evaluate its efficacy. Now a tumor was blocking one kidney, causing infection and sepsis. A blood clot in her lung. Should a breathing tube be used?

The staff in the ER clearly didn’t think so. She has metastatic cancer, they repeated. But what did they know of these new drugs? They were not oncologists. In this era of medical specialization, they read the newspapers just like you to learn that immunotherapy had provided miraculous results, for certain cancers. No one knew if it would work for this one. But it was up to you to decide.

And you decided that she deserved a chance, one last opportunity to fight this thing after so many years of pain. To claim a few years of the retirement you both had planned on. So the breathing tube went in, and later the feeding line as well. And you watched as she suffered some more.

From the ER to the ICU. From the ICU to a regular hospital bed. From there to a skilled nursing facility, where the folders sit at the ready. Had it been days or weeks? There was no tracking the time. People came and went, friends, relatives, the kids. Confined to her bed, she tried to hide the pain from them. But you could always see it there, as you asked yourself if you’d done the right thing or if you’d simply been selfish, unwilling to lose her, unprepared for the enterprise of death.

She would never tell you if she thought you’d been wrong. Ever generous, even now she is careful not to burden you with guilt. She thanks you for being there, calls you her rock. But you wonder if, late at night when she is alone and hurting, she curses you for what you have done.

POLST

Adventures in Modern Medicine

All doctors are created equal. Most of them stay that way.

The pain was back. A dull abdominal ache. On the left side, so it wasn’t appendicitis. I’d been taught about appendicitis way back when. This had been going on for weeks now, months it seemed, on and off, every day. Finally, I decided I had to see a doctor.

Half Moon Bay doesn’t really offer a large choice of general practitioners. There used to be a clinic with about six of them, where they once had me wear a Holter heart monitor for two days (without showering), but it turned out the batteries were dead. Anyway, they couldn’t make money and finally they all moved on. Since then, a lot of people drive over the hill to see a GP, but that’s way too much of a bother. So, after a brief search, we ended up going to one on Main Street. We call her Dr Oops. She disapproves of smoking weed and of salting your food.

Oops got her name when youngest son went for some vaccinations one time. He was to get two shots, and she brought out two syringes and both vaccines in bottles. After some trouble getting the correct volume into the first syringe, she injected a dose into his right arm. Then, as he recalls, she glanced in confusion at the two bottles, blanched, said “oops!”, and excused herself to go call the CDC. It turned out that in adjusting the volume she had managed to mix both vaccines into one syringe, and had no idea how much of anything had been delivered. She came back ten minutes later and told the boy that it was okay, and to go home. So far, he hasn’t been adversely affected. At least, we don’t think so.

In my case, Oops’ initial diagnosis was that I had a hernia. I reminded her that I had been surgically de-herniated on both sides some years previously, but she insisted that these things could somehow recur. She referred me to a hernia surgeon — a different one, this time, than the apparent incompetent who had sliced me open previously — who poked me several times and then said flatly, “You don’t have a hernia.”

Needless to say, this left me quite confused. Mine was not a hysterical indisposition, the pain was real. The surgeon admitted having no idea what ailed me, but was certain of what it was not. I returned to Dr Oops.

This time, I was sent to a urologist. The location of the pain was coincident with some tubule or other with a name I can’t remember. Did I experience pain while urinating? No. Well, I should go see one anyway. She began to look through some book, a listing of specialists. The urinary Yellow Pages. Although San Mateo County boasts more urologists than India and China combined, I was limited to the ones in the network of my HMO. The majority of these were declining new patients, having already paid down their homes, boats, and wives. And so I ended up in the crowded waiting room of Dr Kenneth O’Grady.

Blood Pressure MonitorThis was one of those outfits with two locations exploiting the San Mateo – Mountain View corridor. The Axis of Pain. They were in the low cost, rapid turnover market niche. O’Grady, a little Ivy League type in corduroy pants, worked it with a partner, graduate of some prestigious Caribbean medical school.

I began to describe my symptoms, but the good doctor cut me short. Reassuringly, he knew immediately what ailed me. An infection. Take these antibiotics. Go for this blood test. See you in three weeks. When I returned after that interval with my condition unchanged, I was deemed a resistant case and told to repeat the course of drugs. The blood tests had been negative, but he told me that wasn’t unusual. These infections are hard to detect. Sneaky germs. Feeling somehow at fault, I refilled my prescription and conscientiously did as I had been told. When I appeared before Dr O’Grady for the third time, however, not only had my abdominal aches not improved, but I now had diarrhea and red patches on my skin caused by the antibiotics. “Don’t worry,” said O’Grady. “Nothing could’ve survived all that antibiotic, so I’m sure the infection’s gone. If it still aches, it’s probably nerve damage. Takes a long time to heal. Sorry.”

Sorry, like oops, is not a word you want to hear from your doctor. I went home, despondent. The pain was more severe, now, almost constant. My antibiotic-weakened body lay in bed for long intervals. It was at this point that Eldest Son suggested acupuncture.

Normally, my first reaction would have been that this was just the sort of new age healing that a Generation X vegetarian might be expected to embrace. My French rationalist upbringing had taught me to reject all methods not rigorously scientific. Acupuncture as a healing process was lumped together with homeopathy and banging on drums. It reminded me of Paula, who would go on weekend purges that involved bad food and induced diarrhea. Paula had been a masseuse but then her hands would get tired and she started spending more time each session doing Quantum Energetics. She would have you hold your thumb and index finger together while she tapped your skull three times, then she’d pry your fingers apart. After a moment’s consideration, you were told that your liver was not completely well. Then she’d do it again — tap, tap, tap — and warn of future adrenal complications. Tap, tap, tap — a heart valve, probably the bicuspid. She claimed to have predicted Steve Jobs’ death. I stopped seeing her before she could predict mine.

But acupuncture has gained a measure of respectability, of late, and such was my desperation that I decided to give it a shot. Or at least look into it. Eldest Son suggested a woman in SoMa, highly regarded by his skinny-jeans friends. A web address. I typed it in and there was a dandelion seed floating across the screen in front of a field of out-of-focus flowers. Or weeds, you couldn’t really tell. Slowly, it floated across the whole damn screen. There was no way to bypass this video, I had to wait for the thing to reach the other side. It was like being trapped on a plane. It was halfway across when I parachuted out.160304_1525_LR

Then I remembered Imp, a college friend who now lived in San Diego. He used to be an acupuncturist. He had always been in tune with his body, once ate nothing but brown rice for three months while sitting naked in his apartment listening to Grateful Dead records. I decided to ask him for advice.

“What percentage of doctors do you think really know what they’re doing?” he asked when I called, referring to the anointed medical profession. I guessed it might be about half.

“Hah! More like 5%,” he shot back. “Acupuncture’s the same way. Hard to find a good one.”

He gave me the name of a guy in Marin, acknowledging that it was a bit far for me to drive regularly. This had been his Teacher when he was learning the Way of the Needle, and he was well known on the Marin healing scene. I had a mental image of an old guy walking around in robes all day like Terry Riley. Maybe an embroidered hat. Crystals and mandalas surround and there’s a Cayenne parked in the garage. Anyway, Marin really is too far.

Given that the low odds of finding anyone good made the whole business a crapshoot anyway, it only made sense to pick a place that was convenient to attend. I mean, why pile on the misery by having to drive to the city? There was a guy a half mile away in a strip mall with a nice parking lot. Wife’s friend had gone and said good things about him. She had to be at least as good a judge of acupuncturists as my son or his friends. So I went to see Ming.

He was a stocky, youngish looking man of about fifty who rented a tiny room in back of a chiropractor’s office. It was completely filled by a massage bed, a chair where you put your belongings, and a heat lamp. And mandalas, of course, lots of mandalas. A walk-in closet at the rear seemed to be filled with needles and other paraphernalia. Flute music floated from a boom box. There was nothing for sale: no unguents, pills, or nutritional supplements. He would suggest these, sometimes, but then send me down to the health food store to buy them.

Ming treated me in a variety of ways, including the application of tuning forks. These were, thankfully, of the same key as the flute music, and I wondered if he sometimes changed the music and the forks along with it. Occasionally, he’d suggest something absurd, like giving up French bread because of the gluten, but he’d back off quickly when he saw that I was having none of it. And although he didn’t want to contradict the doctors I had seen, I could tell that he didn’t think I had an infection. He thought I had tendinitis, pointing out that the location of the pain was coincident with some major ligament, along with the aforementioned tubule. Crowded spot. I have to admit that I was surprised when, after a few treatments, the pain was gone.

***

Well, it turns out that you can’t go and get your acupuncture treatment from Ming anymore. It seems he let his license lapse a few years ago, and finally got busted for continuing to practice without it. The state has mechanisms to make sure that we citizens are not subjected to medical treatments from quacks or incompetents. Especially the ones that don’t pay their fees. We should all be grateful.

Waiting

While waiting for the doctors to be done.

I am sitting in the lobby of the hospital at UCSF’s new campus at Mission Bay, waiting. This place is the strangest blend of the elegant and the crude. In the surgery waiting room, a relatively small space that seats a couple of dozen people, there are three wide-screen TVs along one wall. They sit about 3 feet apart. All three are turned on, to different channels, three different action movies. Thus, I find myself downstairs in the quiet lobby, where I shall spend the next 10 hours.

These buildings are beautiful, their fixtures state-of-the-art. There is artwork all over the place, some of it stunning, some obviously the output of physician-photographers. Or their friends. The city of San Francisco, in its wisdom, has decreed that new construction must include a budget for art. From there to selection committees is but a short step.

Here in the lobby atrium there is a mural, two stories high and about 10 feet wide, a digital photo printed on glass. It represents tree branches with leaves and buds and is comprised of five panels, assembled to form a vertical pent-tych, if that is a word. At this scale, you can see the sharpening artifact from across the street. Some of the buds must have moved during the exposure: they are outlined in blue, something the photographer apparently did not see a need to fix, it’s become part of the art. Having nothing better to do, I examine it from close up, noticing that the luminance noise has been removed, replaced with a fine Photoshop grain. Earlier today, as the patient was being prepped, I saw less ambitious, framed photographs and paintings upstairs in the waiting rooms and hallways. I really liked some of them. Maybe I’ll walk around later to look.

A couple of visits ago I tried the cafeteria, but it wasn’t very good. There are also two coffee stands on the ground floor that serve a decent-tasting beverage that just fails to wake me. It’s not labelled decaf…I don’t know what the problem is. Fortunately, I discovered a cafe two blocks down with good coffee and decent sandwiches. I sat there this morning and fed a pigeon. I’ll probably go hang there this afternoon when I get tired of looking at artwork. The doctors all wrote down my cell phone number, are supposed to call me with updates. I would go home to sleep, but I have been asked to contribute karma from closer range. Om.