Boxing Day: The play time holiday (that comes with a touch of giving)

I was born and raised in England, where the day after Christmas Day is Boxing Day. It is a national holiday and also my favorite day of the year. 

When I went to live in America in the 1970s I was disappointed to find that Boxing Day was not a holiday and, shockingly, employers expected you to work that day.

Back then, many Americans were unfamiliar with Boxing Day, just as a lot of people in England were unfamiliar with Thanksgiving Day. In recent decades there has been a growing transatlantic awareness of the basic facts of these two days, as provided in Wikipedia (see Boxing Day and Thanksgiving Day). However, the facts cannot be expected to evoke the feelings that come from living those days, year after year.

Over the years, when Americans asked me about Boxing Day, they got my version, which I tended to universalize as "this is how Boxing Day is in England." I now realize I was giving them "what I liked about the Boxing Days that I enjoyed in England in the 1950s through the early 1970s."

So, this Boxing Day, I wanted to give a sense of how it was for me as a boy, without pretending to know if this is what it was like for other children, or what it is like in England today. I will start with the meaning of the term, as I understood it: Boxing Day comes from the tradition of rich people boxing up the Christmas leftovers and taking them to the poor people on the day after Christmas. 

I should note that not everyone agrees that this is origin of the term "boxing" as applied to this day. However, the archetype of this "boxing" behavior is represented in the series of British stamps on the right. 

The story they illustrate is that of "Good King Wenceslas," immortalized in the Christmas carol of the same name. The first line of that carol is "Good King Wenceslas looked out on the feast of Stephen." (For the tune and the rest of the verse, see below.)

The feast day of Saint Stephen is December 26, a.k.a. Boxing Day, the day on which the Saint Wenceslas miracle occurred. This involved the high-born Wenceslas and his page taking alms to the poor, in the snow. (It is a story that I have previously referenced for the strange reason noted here.)

To understand my love of Boxing Bay you need to know what my Christmas Day was like back in the 1950s and 60s. It began with going downstairs on Christmas morning to find gifts under the Christmas tree (after the age of nine it began with me trying to stop my younger brother getting up before dawn to go downstairs). 

After unwrapping our gifts and waking our parents--not always in that order--there would be an abbreviated period of playing with new toys, cut short by the need to tidy up the house for Christmas dinner and get ourselves ready for church.

After the Christmas morning service at church, where we would see an assortment of friends and family—and talk about the presents we had received that morning—we would embark on a series of house visits taking Christmas presents to relatives. This always included at least one great aunt and my dad's parents. (My mum's mum lived with us and usually stayed at home on Christmas morning to ease the Christmas dinner through the final stages of preparation.) 

After these visits, which involved a lot of good manners and sitting properly, we eventually got home to the Christmas dinner. After that, it was time to watch the Christmas programming on television. (These were often shows created for that particular Christmas, going out live; in other words: watch it now or never see it, ever, no repeats.) 

And that's about where Christmas Day ended. In our house children went to bed many hours before grownups. But we didn't mind because we had been blessed with new toys. We had done our duty to family. We had been entertained. 

On the other hand, Christmas day seldom provided a whole lot of time to play. So then came Boxing Day! No shops open, no need for dad to go to work. Plenty of time to play, inside with our toys, but also outside if weather permitted. If there was snow then it was time for tobogganing. If there was no snow, there might be a friendly game of rugby or football (soccer). 

Of course, there were Christmas leftovers to fuel the day, and, for most families, an opportunity to relax and enjoy the spirit of the season. At least, that's how I remember it. And that's how I have tried to keep Boxing Day, despite the fact that it was not a 'standard' holiday in America, where I have lived for big chunks of my adult life.

I don't go to the stores on Boxing Day. I don't work, if I can possibly avoid it. I just spend the day relaxing, maybe communicating with friends. There is no set agenda for Boxing day. You make it up as you go along, it's a Do-It-Yourself holiday (and not a bad day to try one of the DIY projects you've been looking forward to). This year I had a lingering cold and sore throat on Boxing Day and so I spent most of the day reading fiction and writing non-fiction, including this blog post.

As you may have noticed, my celebration of Boxing Day does not follow in the footsteps of Wenceslas. I didn't take any alms to the poor. However, this year I did make time on this day to re-invest some of my micro-loan funds at Kiva. I also took some time to acknowledge my great good fortune in being able to spend this day the way I wanted to. 

So there it is, I'm not looking to start a Boxing Day movement or fight the rampant commercialism of Boxing Day, depressing as that can be. I'm just saying Boxing Day is my favorite day of the year, and now you have some idea why.

Good King Wenceslas

1,000 MPH on Land? The SSC Bloodhound takes aim

At the end of the English street where I was born sat the Alvis factory, turning out automotive works of art in a part of the world--The Midlands--that still harbors some of best engineering talent in the world. I've been a car nut and land speed record junkie since I was a boy, no doubt encouraged by learning that one of the legendary record holders was John Cobb (exact connection to family tree not known).

John Cobb was the first person to take a ground vehicle over 400 mph, back in 1947, and arguably held the land speed record longer than anyone (1939 to 1964). Cobb's Railton Special, with its twin W12 Napier aircraft engines, was the height of internal combustion-powered, wheel-driven technology. After Craig Breedlove put a turbojet in Spirit of America around 1963, the focus of land speed records shifted to jet propulsion. That is what took Andy Green and ThrustSSC through the sound barrier in 1997. Where do you go after breaking the sound barrier? How about 1,000 mph, the target speed of the BloodhoundSSC shown in this amazing computer visualization.
The power system for BloodhoundSSC is complex to say the least, incorporating a Cosworth V8 gasoline engine, a jet engine, and a rocket. Yes, a rocket. In fact, Gary Gabelichused a rocket to take his Blue Flame to 630 mph in 1970, setting a record that stood until 1983 when Richard Noble hit 634mph in Thrust2. BloodhoundSSC was originally designed as a rocket car but a jet engine was added for greater control.

The Cosworth V8, made in the Midlands and currently used in a number of Formula One racing cars, will not drive any wheels; its job is to pump rocket fuel and support the electrical and hydraulic systems on this huge vehicle.

The first attempt on the world land speed record with BloodhoundSSC should take place in 2013. To learn more about this extreme automotive adventure, check out the official BloodhoundSSC site.

Facial recognition technology and the Right of Publicity: Could this hot tech trend violate state laws?

If someone uses a photograph of your face for commercial purposes they could be breaking the law. In an odd way, this statement connects two areas of my life, information security and movie making. Photographs of faces are used in some security systems and lots of movies. When you make a movie it is standard procedure to ask permission to use a person's picture. You record that permission with an "Image Release" that is signed by the person, or their guardian if they are under 18. Here is part of a standard release like the one we used for our movie:
"I grant permission to The Movie and its producers, to take and use visual/audio images of me for their production. The images may be used in any manner or media such as publication, promotions, broadcasts, advertisements, posters and theater or home video distribution. I wave any right to inspect or approve the finished images...I release The Movie and its producers and agents...from any claims, damages, or liability which I may ever have in connection with the taking of and use of the images or printed material used with the images."

The reason for such broad language is the breadth of a legal right with which many Americans are not familiar: The Right of Publicity or RoP. Now might be a good time for venture capitalists and Silicon Valley engineers to familiarize themselves with RoP. Why? Consider what my good friend and colleague Cameron Camp recently wrote about over on the ESET Threat Blog: the use of facial recognition for commercial purposes. Cameron provided some interesting commentary on a startup venture that had the following idea, something that might sound like a cool marketing ploy but which might also be, as I will argue, illegal:
Networked cameras in shops scan the faces of customers and try to match them with faces of Facebook users who have signed up for special deals.

At first blush this sounds like an automated version of my brother's butcher. The analogy goes like this: My brother works from home so he tends to be the one cooking dinner and, because he and his wife like to live in small villages in Europe, he buys the meat for those meals fresh, almost every day of the week, not in a weekly trek to a big supermarket. So my brother gets to know his local butcher and the local butcher rewards local customers with special deals, made on the spur of the moment, based on a form of facial recognition that I like to call: "Hi Mike, how's it going?"

The problem with the computerized version is that having your picture taken by a digital camera is a lot different from your local butcher memorizing your face in his brain. Transferring that digital image over the public Internet to a vast server farm that might be thousands of miles away, possibly in a different country, introduces concerns way beyond any misgivings you might have about the butcher remembering your face. Consider what has to happen to reward people who have opted in to this facial-deal scheme:

  1. Take a picture of every customer.

  2. Isolate the face within each image and send to a server which can scan it against a database of known faces belonging to people who have opted in.

  3. Return a result when there is a match.

In other words, you are photographing people in such a way that their identity is clear, then using those photographs for commercial purposes (specifically deciding who gets a particular deal but in general promoting your business so it is more appealing than your competition). Now consider this piece of law, on the books since 1903, namely Article 5, Section 50 of New York State Consolidated Laws:
Sec. 50. Right of privacy. A person, firm or corporation that uses for advertising purposes, or for the purposes of trade, the name, portrait or picture of any living person without having first obtained the written consent of such person, or if a minor of his or her parent or guardian, is guilty of a misdemeanor.

I know this statute is labeled "Right of privacy" but lawyers assure us it is the basis of the Right of Publicity. The key words are: Uses the picture of any living person for the purposes of trade.

So, if you design a facial recognition deal scheme based on photographing everyone, regardless of permission, in order to pick out specific individuals who have given permission, you would seem to be violating this law and the Right of Publicity, which is enshrined in many state statutes, as described on the Right of Publicity website,
As of this writing, nineteen states recognize the Right of Publicity via statute (California, Florida, Indiana, Illinois, Kentucky, Massachusetts, New York, Nebraska, Nevada, Ohio, Oklahoma, Pennsylvania, Rhode Island, Tennessee, Texas, Utah, Virginia, Washington and Wisconsin). The majority view is that the right exists by common law in every state that has not defined its position through legislation. The American Law Institute’s Third Restatement of Unfair Competition (1995) §46 also recognizes the Right of Publicity as a distinct and viable legal theory.

I don't want this blog post to come across as an attack on a particular startup or technology, but I do note that one of the states in the above list is Tennessee, which is where the startup described by Cameron is located. One might argue that the Right of Publicity is more widely known in Tennessee than some other states because Tennessee law extends the right to deceased persons, Elvis Presley being the most frequently cited example. Unfortunately, this emphasis on celebrity cases leads some people to assume that only celebrities have a Right of Publicity but this is not the case. Numerous states have made this quite clear: You don't have to be famous for use of your face, without permission, for commercial purposes, to be against the law.

Facial recognition technology is currently hotter than hot in VC and startup circles, partly driven by Facebook's massive accumulation of facial data (it reportedly scans 300 million photos a day for faces). The hottness of facial recognition seems to have increased of late despite the fears expressed by privacy advocates. Yet I don't hear many people loudly proclaiming that commercial facial recognition, through its requirement that non-opt-in faces be checked for opted-in faces, violates the Right of Publicity. (There are some instances of people raising aspects of this point: Tim Bukher, Derek Bambauer, and hopefully it was considered at the FTC forum on the topic.)

Of course, I need to put the standard disclaimer out there: I am not a lawyer. On the other hand I have spent 25 years thinking hard about the spaces where privacy, security, and technology intersect. I have also started several successful companies and produced an award-winning movie. While it is entirely possible that I am missing something that invalidates my argument, I have a strong hunch that some forms of facial recognition violate the Right of Publicity.

(Unless someone points out a big hole in my argument I will try to write more about this topic when I get time, perhaps looking at how facial recognition in a commercial security system is affected by RoP, but my immediate task is to review the terms and conditions over on Facebook to make sure they include, as I suspect they do, permission to use my face for commercial purposes--I'm sure the lawyers at Facebook took heed of RoP, right?)

Paying Forward: Giving a little back while we do the paperwork

Why so quiet here on Cobbsblog? To be honest I took the month of July to recover from our medical nightmare in June. But now I'm back and working on paying back a little if I can. My decision to document my wife's atrocious treatment had mixed results but many of them were favorable. We got a lot of good advice and good wishes from friends (THANKS friends!).

We persuaded our healthcare provider to provide us with a better doctor and the treatment since then has been excellent. However, the task of documenting what went wrong in order to help prevent it happening to someone else has proved daunting. Chey has been working on that, on days when she feels able, which are more frequent than they used to be but still far from 7/7. And of course, I have a full time job, which has been more than full time the last few months as I worked nights and weekends to complete a short video for one of ESET's causes: Securing Our eCity. (If you check that link you will see a player for the video, or you can watch it on YouTube in HD...go full-screen and crank up the is an ad for an upcoming information conference, styled as a movie trailer.)

But what to do about healthcare? I decided to put some time in to hemochromatosis awareness, mainly by perking up the Facebook Hemochromatosis page. This needed work anyway, due to Facebook's latest round of design changes, and the page is worthy of attention. Frankly, this page is a living testament to people coping with one of our country's least recognized medical conditions. Lost amid the deafening roar of political rhetoric about healthcare costs, the simple truth is that our country could save a ton of money if it improved early detection and proper treatment of this major cause of diabetes, heart disease, liver disease, and joint replacements. Heck, the treatment of hereditary hemochromatosis can actually pay for itself! Harvesting the blood taken from HH phlebotomies would boost the nation's blood supply considerably, saving millions of dollars.

I'm also trying to cook something special up for next month when I will reprise my post on hemo-pause and explain how America's baby-boomers can save themselves a lot of pain and suffering. In the meantime, here are some of the past articles on hemochromatosis and links to two of my favorite hemochromatosis sites:

The Rich Guy's Maserati GranTurismo by Pininfarina

For me, born and raised among some of the great automobile marques, one of the pleasures of living in Little Italy, a neighborhood within San Diego, is observing some excellent automobile designs up close. I do this while walking the dog or walking to the coffee shop or walking to work. In fact, walking is a great way to see cars, especially when they are parked. Which is how I came upon this beauty:

As many cars fans will immediately know from the distinctive trident emblem on the grille, this is a Maserati (the current Maserati GranTurismo to be more precise). Ask any automotive design aficionado which design house came up with this look and they are likely to say, without any additional data: Pininfarina. And they would be right. So who would own such a car without knowing that? Apparently the guy who owns this car.

While I was admiring this superb piece of automotive styling a man walked across the street making a b-line for the car and I asked him: "Yours?" He replied that it was. "Beautiful car," I said. He agreed. "One would expect no less from Pininfarina," I said. To which he responded "Huh?" Fearing it was my accent that confused the man, who was now standing by the driver side door, I explained: "Pininfarina design, always outstanding." I nodded toward the classic logo spelling out the name between the wheel arch and the door:

To which he replied: "I thought that had something to do with the rims." And he wasn't wrong, because the design of the wheels on this model does echo the trident emblem, repeated three times, but he clearly had no clue that Pininfarina designed the entire look of his car, or that Pininfarina is a legend in automotive design. Here's Wikipedia:
Founded as Società anonima Carrozzeria Pinin Farina in 1930 by automobile designer and builder Battista "Pinin" Farina, Pininfarina has been employed by a wide variety of high-end automobile manufacturers, including FerrariMaseratiRolls-RoyceCadillacJaguarVolvoAlfa Romeo,HondaFiatPeugeot and Lancia. It also has designed trams in France and Greece, high-speed trains in Holland, and trolleys in the USA. Since the 1980s Pininfarina has been consulted on industrial and interior design.
I might not be able to afford a Maserati, and frankly I don't need a Maserati, what with all the walking and public transportation, and cheap pay-as-you electric cars parked all around. However, I would like to think that people who can afford a six figure car at least have some idea of where it came from, but apparently that is not always the case. Sigh...

Rural broadband content links

A few recent links to useful content about broadband service outside the standard ISP model.

A session about cheap, fast service on Blog Talk Radio.

An article about funding community broadband.

Lots of good material at Community Broadband Networks.

As some readers may know, I am moving to the city and will not be so closely involved with rural broadband in the future. But I still think the future for rural communities lies with broadband.

And on the seventh day: Relief, rest, and ruminations on responsibility

If my wife's pain relief nightmare began on Wednesday of last week, then the seventh day of that nightmare was yesterday. I am thankful to report that the day went well and the nightmare may now be over, although it wasn't actually a nightmare, it was a reality, one we had to live through, and doing that burned a lot of energy. So I decided to rest my blog on the seventh day and just use Twitter and Facebook to let people know the good news: Chey now has a doctor who cares!

ThChey's off-road racere new doctor seems to be just what a doctor should be: she is compassionate, a good listener, a good communicator, thorough, knowledgeable, and able to acknowledge, as we all must do, the limits of our current knowledge, as well as a willingness to further expand our knowledge. Of course, the relief that comes with this news is tempered by the indignity and distress experienced in getting to this point.

But the bright side is still bright: Chey now has an improved regimen of pain medication and NO pain contract. (I decided to celebrate with a photo of Chey smiling, from the front page of the local newspaper in Alice Springs, Australia, where she was preparing to take part in the Finke Race 2000).

Something great about Chey's new doctor? She is not a fan of pain contracts. In fact, if you find yourself looking for a doctor, perhaps after moving to a new city like we did, a good tip is to ask any prospective doctor: What do you think of pain contracts? If the doctor agrees with Dr. Kevin Pho that pain contracts threaten the doctor-patient relationship, then you probably have a winner (but no, Dr. Pho is not our new doc).

Finally connecting with a good doctor yesterday was such a reversal of medical fortunes that both Chey and I are suffering from a sort of psychological whiplash. We will take a few days to recover, but then it will be time to move on to post-crisis analysis and lessons learned. Perhaps the biggest question to answer is: Why did things go so horribly wrong? Who was responsible? If we can answer that we may be able to save other people from a similar fate.

Talking of responsibility, I do feel obliged to keep spreading the word about some of the nasty things this incident brought to light, like pain contracts. Expect a blog post on the topic later this month delving into questions like:

  • Are they legal?

  • What should they include to protect you, the patient?

  • How to add a clause that protects you?

Let me close with another big THANK YOU to everyone who expressed support for Chey and outrage over her mistreatment. We will try to do what we can to inform others and prevent this from happening to anyone else.

Why day 6 is really day 3355 in Chey Cobb's chronic pain management nightmare

Day 6 and we are keeping hope alive (despite day one, day two, day three, day four, and day five). In a moment I will explain why day 6 this is more like day 3355, but first an update. As the saying goes: My wife is resting uncomfortably. She has an appointment with a new doctor on Wednesday and, eternal optimists that we are, we are looking forward to that.

Chey reading on the aft deck of Home Shore, an 80-foot fishing trawler making the Inside PassageYou pretty much have to be an optimist to live through years of chronic pain as my wife has done. Sometimes hope is all you have to go on; hope of relief, hope of achieving management of your pain at levels that make life livable.

Chey's 50th birthday was 3,355 days ago and she was in pain that day. I remember because I baked a Baked Alaska and she only had a very small slice even though I did a pretty decent job of it (the Baked Alaska was to go with her present: passage for two on an 80-foot fishing trawler sailing from Sitka in Alaska to Seattle).

On that trip, in September of 2003, Chey had yet another really painful migraine. When we got back home she had a bad reaction to a seizure medication they sometimes prescribe for migraine. It is hard to remember any pain-free times since then.

Sadly, there is growing evidence that chronic pain is not only painful, but also life-threatening. We read on Web MD that Severe Chronic Pain Lowers Life Expectancy. The article states:
Previous research has demonstrated a clearly negative influence of chronic pain on health. Now, a new study portrays a profound link between severe chronic pain and death; inflicting nearly a 70% greater mortality risk than even cardiovascular disease.

The study indicates that even after you adjust for sociodemographic factors and the effects of long-term illness, "patients with severe chronic pain had a 49% greater risk of death compared with all-cause mortality and a 68% greater risk of death compared with all cardiovascular-disease-related deaths."

I appreciate that the author of the article agreed with me that "The most critical information to take away from this research is that withholding appropriate pain medication is a virtual death sentence." In other words, this means that doctors who "don't believe in" using narcotic pain medication "are sentencing some of their patients to an early death."

Now, put this in the context of my wife's recent experience, being cut off from pain medication for seeking more medication. The author writes:
"families and friends of severe chronic pain patients must never try to dissuade the patient from using all appropriate treatments and medications to reduce pain. Convincing such a patient to avoid narcotics, if and when they are appropriate, is equivalent to pushing them into an early grave. Instead, physicians and families must encourage the chronic pain patient to employ each and every possible treatment, including comprehensive pain management programs and powerful pain medications. It is no longer a matter of making someone more comfortable. It's a matter of life and death."

The referenced article is: Torrance N, Elliott AM, Lee AJ, Smith BH. Severe chronic pain is associated with increased 10 year mortality. A cohort record linkage study. Eur J Pain. 2010(Apr);14(4):380-386. As the author of the WebMD item notes, this new research is comprehensive, vetted and validated. There is a link to the abstract here:

If you would like a copy of the full article, leave a note in the Comment field and I will see what I can do.

Day 5: Why not palpate and evaluate?

Chey is feeling slightly better today as the Ativan they gave her in the psych ward wears off. Still lots of pain and some slurred speech. As of 4PM nobody from Sharp HealthCare has been in touch. AFAIK, their patient advocate delivered his report at 1PM today in the full knowledge of how badly Chey has been treated by Sharp so far.

Again I want to thank the folks from around the world who have expressed moral support for Chey. In particular I want to thank fellow veteran IT writer Mark Gibbs for shining light on the situation in his Forbes blog.

Why Not Palpate and Evaluate?

As I sit and wait for calls to be returned I get a chance to replay events of the past few days and new questions come to light, like: "Why did nobody at the hospital palpate Chey?" Okay, that sounds a bit weird if you don't know that palpate is the medical term for pressing on the patient's body (like many people I sometimes misspeak the word as palpitate).

A good doctor can tell a lot by probing major internal organs this way, as well as getting tactile feedback, i.e. patient response to touch. One of the first Google results I found on the subject describes how you would examine someone with musco-skeletal problems like Chey. You don't have to touch Chey much to tell she is in a lot of pain, yet nobody seems to have tried that.

Of course, pain is a hard thing to quantify. Different people have different tolerances for pain. For example, Chey can pick up hot things that I can't bear to touch. Is she a Spartan? Am I a wimp? Is there a way to evaluate this stuff?

Yes, there are several ways to arrive at a measure of pain, or the effect of pain. Here is the US English version of the 24 point version of the Roland-Morris disability questionnaire from MAPI, an organization that seems to focus on quality of life measurements and standards:
When your back hurts, you may find it difficult to do some of the things you normally do. This list contains some sentences that people have used to describe themselves when they have back pain. When you read them, you may find that some stand out because they describe you today. As you read the list, think of yourself today. When you read a sentence that describes you today, mark the box next to it. If the sentence does not describe you, then leave the space blank and go on to the next one. Remember, only mark the sentence if you are sure that it describes you today.

  1. I stay at home most of the time because of the pain in my back.

  2. I change position frequently to try and make my back comfortable.

  3. I walk more slowly than usual because of the pain in my back.

  4. Because of the pain in my back, I am not doing any of the jobs that I usually do around the house.

  5. Because of the pain in my back, I use a handrail to get upstairs.

  6. Because of the pain in my back, I lie down to rest more often.

  7. Because of the pain in my back, I have to hold on to something to get out of a reclining chair.

  8. Because of the pain in my back, I ask other people to do things for me.

  9. I get dressed more slowly than usual because of the pain in my back.

  10. I only stand up for short periods of time because of the pain in my back.

  11. Because of the pain in my back, I try not to bend or kneel down.

  12. I find it difficult to get out of a chair because of the pain in my back.

  13. My back hurts most of the time.

  14. I find it difficult to turn over in bed because of the pain in my back.

  15. My appetite is not very good because of the pain in my back.

  16. I have trouble putting on my socks (or stockings) because of the pain in my back.

  17. I only walk short distances because of the pain in my back.

  18. I sleep less because of the pain in my back.

  19. Because of the pain in my back, I get dressed with help from someone else.

  20. I sit down for most of the day because of the pain in my back.

  21. I avoid heavy jobs around the house because of the pain in my back.

  22. Because of the pain in my back, I am more irritable and bad tempered with people.

  23. Because of the pain in my back, I go upstairs more slowly than usual.

  24. I stay in bed most of the time because of the pain in my back.

Okay, so Chey's responses to this assessment today are Yes to every question except 19 and I would say 19 is only No because she is stubborn and refuses my help. Note that 20 and 24 are a bit tricky. Does Chey stay in bed all day? No, but she could be said to spend most of the time in bed, and when she gets up and moves to the sofa she mainly reclines on it, she does not really sit on it for long.

If, during this whole ordeal of questioning her need for pain relief, someone had used this assessment on Chey they might have understood how much pain she was in. Of course, they also could have looked at her medical records and the scans that show some pretty brutal spinal anomalies, but hey, what do I know, I'm not a doctor. Or should that be: "Hey, what do I care, I'm just a doctor."

Update: At 5pm I got a call from the patient advocate at Sharp that might be the start of a solution. Will have to see what tomorrow brings.

Day 4 of our medical nightmare: Observations and FAQ

We spent Sunday, June 10, at home in our new apartment surrounded by boxes that have not been unpacked. Spending 3 days in any kind of medical facility will blow a hole in the best laid moving plans. Coming out of the facility in a heap of pain will only make the hole bigger.

Nurse Layla keeps vigilChey is in a lot of pain and spent most of the day in bed asleep with, as you can see on the right, the ever faithful Nurse Layla in attendance. (A few years ago Chey got a type of memory foam mattress that has air pockets to keep it cool.) Chey tried to sit up and read but it was too painful to sit up for long and the Ativan makes it hard for her to concentrate enough to read.

In between unpacking boxes I wanted to get a few more observations down on paper, as it were, and answer some questions that I can hear forming out there. My apologies in advance for any typos.

Q. Was Chey arrested?
A. No.

Q. In what kind of locked facility was Chey held?
A. The Sharp Grossmont facility called Behavioral Health.

Q. Was Chey held on a Section 5150?
A. No. Section 5150 is part of the California Welfare and Institutions Code. Quoting from Wikipedia, 5150 is a section of the Lanterman–Petris–Short Act or "LPS" which "allows a qualified officer or clinician to involuntarily confine a person deemed to have a mental disorder that makes them a danger to him or her self, and/or others and/or gravely disabled."

Q. Why do you say Chey was detained against her will?
A. When Chey was inside the secure medical facility she and I were told that she would be detained for 72 hours under Section 5150 if she did not agree to stay on a "voluntary" basis.

Q. What are some implications of being held on a Section 5150?
A. The federal government is informed of all 5150 holds and you can probably forget your right to own or possess a firearm if you have been 5150'd. You also lose the ability to obtain or retain the  Top Secret (TS/SCI) clearance that Chey needed to work for the NRO.

Q. What was the detaining facility like?
A. It was a clean and modern building located on a beautifully landscaped hospital campus, but with high walls so you couldn't see much of the campus, and the doors were locked and alarmed, meaning the doors could not be opened by anyone but staff and attempts to open them set off a loud alarm. All personal possessions have to be handed over to staff. Prayer beads are not allowed. You would expect many of the people staying at such a facility to have serious behavioral problems.

Q. You say Chey has suffered for years from under-treated chronic pain, how unusual is that?
A. Chronic, under-treated pain afflicts over 100 million Americans.

Q. What is a drug seeker?
A. This is medical code for someone who is judged, at the sole discretion of a nurse or doctor, to be seeking drugs to get high and/or feed an addiction.

Q. Is it drug seeking to ask my doctor to give me something for my pain?
A. That depends on your doctor's opinion. He or she can call it drug seeking if they like.

Q. What about seeking relief for pain while you are in hospital, surely that is okay?
A. When Chey was in the psych ward she was handed a document that said: "When having pain, it is important that you promptly communicate the type of pain you are feeling, its location and the level (zero to 10) so that we can create a plan to treat your pain." Another document stated her right to prompt medical treatment. Chey's attempts to communicate as instructed in this documented were not only ignored, but she was told "We've called your husband so he can tell you to stop bothering us." Chey entered with level 8/9 pain and her pain remained at that level through her departure.

Q. Is Chey a drug seeker?
A. No. She is a pain relief seeker. Chey has no desire to get high. She just wants to control her pain to the point where she can do more than like in bed wincing in agony every time she adjusts her position. Getting enough pain relief to where she could work again would make her very happy, but not high.

Q. What are the implications of being branded a drug seeker?
A. Very few doctors will treat you. You may also lose the ability to obtain or retain the  Top Secret (TS/SCI) clearance that Chey had to have to work in data security for the NRO.

Q. What is a pain contract?
A. Some doctors refuse to prescribe strong pain medicine, regardless of the patient's condition, and without any evidence of drug abuse, unless the patient first signs a "contract" in which the doctor asserts the right to deny further treatment if the patient violates certain clauses.

Q. What is an example of a pain contract clause that a doctor might cite as a reason for denying treatment?
A. "I will not ask for more pain medication than I am currently allowed."

Q. Are you serious, I mean are these pain contracts for real?
A. Very much so. Here's an AMA article: "what is becoming common practice in many pain specialty clinics is using a preprinted, standardized form that says, 'If we're going to treat or prescribe controlled substances to you, these are the conditions under which we'll do so--and sign this document, and if you fail to do so, then we'll fire you from our practice.' "

Q. Did Chey sign a pain contract with a pain specialist?
A. No, she was forced to sign a pain contract by her primary care doctor in San Diego in order to continue the treatment plan she was on in New York.

Q. What is an example of a pain contract?
A. Here's a sample pain contract. Note that there is nothing in the contract for the patient. There is no provision to get more medication if the patient experiences additional pain.

Q. What are some more sample pain contract clauses.
A. These contracts tend to have clauses like: "I agree that I will use my medicine at a rate no greater that the prescribed rate and that use of my medicine at a greater rate will result in my being without medication for a period of time."

Q. Why do you say Chey was forced into an unsupervised "cold turkey" detox?
A. Note that the sample pain contract includes a provision to end the treatment over time. Chey was already out of medication where her doctor refused to provide any more, and no supervised detox was offered.

Q. What other information can I find about pain contracts?
Here's more info from an article on the topic in a medical newsletter: "may require patients to submit to blood or urine drug tests, fill their prescriptions at a single pharmacy or refuse to accept pain medication from any other doctor. If patients don't follow the rules, the agreements often state that doctors may drop them from their practice."

Q. Do all doctors think pain contracts are a good idea?
A. Thankfully no. Here is a good explanation of why pain contracts are bad for patients and doctors.

Q. Are pain contracts legal?
A. I'm not a lawyer but a pain contract hardly fits the normal definition of a contract since there is no choice in the matter. The patient agrees or suffers the consequences, like disabling levels of pain.

Q. The apporach taken by Chey's doctor sounds pretty uncaring, what are some examples of other uncaring things that Sharp Rees-Stealy doctors have said to Chey since she became a Sharp HealthCare patient?
A. 1. Hematologist, consulted for hemochromatosis: "You're wasting my time, I have patients with real diseases to see....have you ever seen a picture of child with leukemia, that's a real disease."
A. 2. Rheumatologist, after cursory examination of patient's hands: You obviously have osteoarthritis, what do you want me to do about it? (Delivered with a tone and attitude that clearly implied "Get out of here you are wasting my time".)
A. 3. Endoscopy doctor, after an endoscopy, speaking to me and Chey: "Don't ever tell your doctor you are bleeding from the rectum again, it's a complete waste of my time."