Laura Beckett

[family photo of Laura Beckett and daughter]
Roughly two years ago, I was ready to fight.

I was looking into going to Germany for the ketamine coma treatment that has had such great -- but poorly understood -- results in people with refractory CRPS. I have CRPS/RSD in all of my limbs and now, in my face. Blah blah and yadda yadda!

At the same time, recognizing some tough financial realities and the not-so-minor detail that I have a lot of what is charmingly designated by the medicos as "co-morbidities," my neurologist was urging me to look into getting a pain pump. I had wanted a spinal cord stimulator earlier on but the spread of the disease made that a not so effective option and he was having a hard time handling my pain.

Isn't that a riot?

My doctors have a hard time handling my pain. There are days, though this is not one of them, that I resent that. With my neurologist, I try to walk a fine line. There is significant dissonance in his urgings that I get one implant or the other -- because he would always preface this desire with this slightly jarring statement: "Of course, with you? If you got an infection, you would be dead before you could get to the Emergency Room." [Given what ER-based blogs reveal, I think the ER/ED might be a waste of time, anyway.]

When I first investigated the ketamine coma protocol, it cost around $20,000. The cost has at least tripled -- probably due to inflation and the increased complexity of the care as the program has evolved. But, in my opinion (and I very much respect those on the other side of the argument), the ketamine coma is the best thing, indeed, the only thing, out there that comes close to a cure. It is not permitted in the states, not because of the drug but because of the length of time patients spend in coma. Indeed, "awake" ketamine infusion therapy is gaining in popularity as a treatment.

So why are my hopes in the past tense? I began to feel ill in ways that did not make sense -- although I did, for the longest time, attribute every symptom to CRPS and just thought that this freakishly weird disease was just getting weirder. Anyway -- eventually, we discovered that I have infected joint prostheses, as well as osteomyelitis. I have had three major surgeries since August 2008, and am facing another in the coming weeks. I have had my artificial shoulders removed and am not promised new ones. My left hip and my lower spine are suspicious for infection, too. The pathogen(s) involved have not grown in the lab -- although there is no doubt that there is massive infection (According to my surgeon, when he bored into the left humerus, it suddenly "exploded," spewing pus all over the place, even sending some up into my neck. Yummy details!).

All of my plans and hopes for either the ketamine coma (I thought my investment portfolio was sitting pretty!) or the pain pump are over. No one is going to put me under for any period of time (Did I not mention ending up on a ventilator for 5 days after one of the recent surgeries?) or put another foreign body into this body.

Oh, and I have MRSA.

Today I have a major appointment with the doctor I respect the most, whose opinion I highly value. In essence, when I am unsure but he is not? I will substitute his assurance for my waffling will. He has somehow pretty much predicted the outcome of each leg of the journey thus far. "I don't think we are looking at a positive outcome."

When I face a week like this one -- The Boutiqueur today, Infectious Disease tomorrow and Wednesday, Dr. PainDude Thursday -- I get fairly antsy. I know it will be physically hard and very painful but more than that, I have to prepare for getting emotionally jerked around.

So I clean my house like a rabid woman, I cook at 4 am, I attend to a myriad of details because, all of a sudden, details alone matter.

This morning -- after finally getting my Baked Cayenne Cheese Grits to set -- I log on to find that the most recent visitor to elle est belle la seine la seine elle est belle arrived via a search for "karl beckett crps." It is not surprising that this happened -- I mean, I may mention Karl Marx from time to time, Samuel Beckett is one of my literary heroes, and CRPS? Well, I might speak of it occasionally!

My heart sank when I followed this person's lead and read the story about the very real Karl Beckett, the ketamine coma, and CRPS.

His wife went to Germany for the treatment, but on the second day of the coma, developed a terrible staph infection -- MRSA -- and is now on a vent and has lost the use of her legs and arms. Their money has run out and he has lost his job.

Just to get her home via air ambulance, he needs at least $71,000.

Please read their story and, if you are so led, a trust fund has been set up:
c/o TD Bank NS, 129 S.Blackhorse Pike Runnemede, NJ 08078

Here's another article about the situation: N.J. woman trapped in German hospital.

*Edit: Reading the sometimes ridiculous comments that follow the articles can be upsetting to those of us with CRPS. Dr. Schwartzman is wrongly being smeared -- everything I know of the man tells me that he is a selfless, tireless worker on behalf of those with this stupid disease. Laura Beckett's family is, of course, upset and highly emotional but it is unfortunate that Dr. S has become the sacrificial lamb to their tragedy.

As for the ketamine coma therapy itself? The main reason it is not approved for use in the United States is the *length* of the coma, not the use of ketamine. I believe that the FDA will not approve coma treatments that last more than two days. Ketamine is being used as an accepted treatment in the U.S. for CRPS, but only as a short "infusion" while the patient is awake.

About the fur flying over the issue of ketamine being a "street drug," well, get a grip, people! Ketamine is used as anesthesia for humans in ERs and ORs every day just as, yes, it is used illicitly as Special K [on scuzzy street corners and in dank, dark, evil bars] every day, too. It often happens that there is a lag time in the general understanding of how a drug that is abused on the street can have an extant legitimate medical use -- I encountered this when I began using methadone as my long-acting pain reliever. Folks who weren't aware of its profile as a cheap and effective pain reliever preferred to conclude that I was a heroin addict. Luckily, I have long experience in, as put by my darling brother, the Grader Boob, "making like a duck, and letting it roll off my back."

In their present circumstances, the Becketts can hardly be as forgiving. The overarching issue of whether the German doctors screened Laura for MRSA is something of a non-issue. She may have acquired it there; She may have been a carrier -- whatever, MRSA, like "stuff," HAPPENS. There is no relief to be had by playing the blame game.

This poor family is surely at wits' end. If you can, consider donating or bringing heat to their legislators, or publicizing Laura's plight. Word is spreading and I am optimistic that help is on the way -- but from Laura's vantage point, it must feel like forever.

Oh, the statement by the German doctors that this is the first complication in the ketamine coma treatments? Ridiculous. It is well known that pneumonia is not at all uncommon in the course of the week spent on a ventilator -- in fact, it happens fairly frequently, but my understanding is that the ICU nurses are good at respiratory hygiene, keep the patients turned and well-suctioned, etc. The most frequent consistent negative that I've read about is the one anticipated -- the difficult transition from ketamine coma to a normal awakened state (generalized weakness, hallucinations, trouble eating, etc.). All in all, considering the extreme nature of the treatment, I think things have gone remarkably well. Do I think it is risky? Of course, it is risky. Who has ever said otherwise?

Considering how few treatments there are for CRPS, I hope that the community of "sufferers" can refrain from being inflammatory while working to help the Becketts. Let's keep them the focus and not make this specific set of circumstances (which we really do not know, anyway) a referendum on the coma protocol.

Barack Obama and William Ayers = John McCain and Charles H. Keating, Jr.

I am sorely disappointed.

Sigh.

The appropriate -- but discouraging in its very appropriateness -- response?

Barack Obama and William Ayers = John McCain and Charles H. Keating, Jr.

The significant difference? McCain, at the time a United States Senator, was determined by the Ethics Committee of exercising "poor judgment" -- poor judgment that contributed to the Savings and Loan debacle of the late 1980s and early 1990s. Barack Obama points out that Bill Ayers is “somebody who engaged in detestable acts 40 years ago, when I was 8.”

Is it noteworthy to point out that McCain's indiscretion occured when he was at the comparative ripe old age of 51 (depending on what date one chooses: I chose 1987 because it marks McCain's maverick-y response to being called a "wimp" -- that is, it marks his participation in the infamous April 1987 meetings with FHLBB members.)

Oh, did I forget to point out that once McCain discovered Keating was under criminal investigation, he ended his involvement? Selon Wikipedia:

On April 2, 1987, a meeting with chairman Gray of the FHLBB was held in DeConcini's Capitol office, with Senators Cranston, Glenn, and McCain also in attendance.[8] The senators requested that no staff be present.[13] DeConcini started the meeting with a mention of "our friend at Lincoln."[8] Gray told the assembled senators that he did not know the particular details of the status of Lincoln Savings and Loan, and that the senators would have to go to the bank regulators in San Francisco that had oversight jurisdiction for the bank. Gray did offer to set up a meeting between those regulators and the senators.[8]

On April 9, 1987, a two-hour meeting[5] with three members of the FHLBB San Francisco branch was held, again in DeConcini's office, to discuss the government's investigation of Lincoln.[12][8] Present were Cranston, DeConcini, Glenn, McCain, and additionally Riegle.[8] The regulators felt that the meeting was very unusual and that they were being pressured by a united front, as the senators presented their reasons for having the meeting.[8] DeConcini began the meeting by saying, "We wanted to meet with you because we have determined that potential actions of yours could injure a constituent."[14] McCain said, "One of our jobs as elected officials is to help constituents in a proper fashion. ACC [American Continental Corporation] is a big employer and important to the local economy. I wouldn't want any special favors for them.... I don't want any part of our conversation to be improper." Glenn said, "To be blunt, you should charge them or get off their backs," while DeConcini said, "What's wrong with this if they're willing to clean up their act? ... It's very unusual for us to have a company that could be put out of business by its regulators."[8] The regulators then revealed that Lincoln was under criminal investigation on a variety of serious charges, at which point McCain severed all relations with Keating.[8]

I am very attracted to people, politicians, especially, who are able to adjust their attitudes and actions when new information comes to light. Nothing proved more disheartening to me than W's constant noise about not changing horses in midstream, not abandoning a stance, even a clearly inappropriate and losing stance.

More than just a sign of intransigeance, his rigidity heralded his cruel stupidity.

Mais je divague... So I admire, to an extent, McCain's retrieval of his good sense from the edge of criminal intent and activity -- back then. What an honest guy. What a maverick. WhooHoo.

Likewise, I am very put off by people, politicians, especially, who figure, and appeal to, some sort of lowest common denominator.

In June, the Washington Wire blog at WSJ.com published this interesting take on current applications of Swift Boat style political attacks:

June 30, 2008, 6:55 pm
McCain Supporter Defends Swift Boat Attacks
Laura Meckler reports on the presidential race from Harrisburg, Pa.

A group of John McCain’s supporters came together today to defend McCain against charges that he was overstating the importance of his military service. Many remember how Democrat John Kerry was wounded by attacks in 2004 on his military record, and the McCain campaign does not want to let any charge go unanswered. More important, the spat gives the McCain campaign a reason to talk about his military service, a topic that serves him well.

The conference call with reporters took an odd turn when the supporters were asked if the anti-McCain comments, including one issued Sunday by retired Gen. Wesley Clark, were analogous to charges issued by Swift Boat Veterans for Truth, the group that attacked Kerry in 2004. The group was condemned in many quarters, and today its very name — swift boat — is used as a synonym for a slimy political attack. Even McCain condemned the Swift Boat group in 2004.

But one McCain supporter, retired Col. Bud Day, who was held prisoner with McCain in Vietnam, said the attacks on McCain were nothing like the swift boat attacks. He helped produce those attacks against Kerry, which were true, he said. The attacks against McCain are not, he added.

Put all of this in the context of Sarah Palin's most recent idiocy -- and we are back to old-school backroom nonsense, made almost intolerable by this bright and shiny, now inane, now astute, new mouthpiece. She is paving the way for another detour from today's problems in order to reintroduce Jeremiah Wright, and -- undoubtedly -- Tony Rezko. God forbid she should address the economy in lieu of "associations" that have been explained and vetted ad nauseum.

Douglass K. Daniel goes beyond pointing out the blatant dishonesty of Palin's lowest-common-denominator approach and notes a frightening racial "subtext" in her golly-gosh-gee remarks:

Palin's words avoid repulsing voters with overt racism. But is there another subtext for creating the false image of a black presidential nominee "palling around" with terrorists while assuring a predominantly white audience that he doesn't see their America?

In a post-Sept. 11 America, terrorists are envisioned as dark-skinned radical Muslims, not the homegrown anarchists of Ayers' day 40 years ago. With Obama a relative unknown when he began his campaign, the Internet hummed with false e-mails about ties to radical Islam of a foreign-born candidate.

Whether intended or not by the McCain campaign, portraying Obama as "not like us" is another potential appeal to racism. It suggests that the Hawaiian-born Christian is, at heart, un-American.

The fact is that when racism creeps into the discussion, it serves a purpose for McCain. As the fallout from Wright's sermons showed earlier this year, forcing Obama to abandon issues to talk about race leads to unresolved arguments about America's promise to treat all people equally.

John McCain occasionally says he looks back on decisions with regret. He has apologized for opposing a holiday to honor Martin Luther King Jr. He has apologized for refusing to call for the removal of a Confederate flag from South Carolina's Capitol.

When the 2008 campaign is over will McCain say he regrets appeals such as Palin's?

I am sorely, sorely disappointed. This was supposed to be the election of all elections, wherein dialogue was to be on point, on policy, and all about respecting the intelligence of the American electorate. Instead we are left with inflammatory analogies that kill the intellectual rigor most had been hungrily anticipating for the presidential elections of 2008.

Barack Obama and William Ayers = John McCain and Charles H. Keating, Jr.