Grousing

Given the glancing treatment I recently afforded the topic of mental illness and CRPS, I thought it worth reposting this blog entry from April 2009. At that time, I was apparently reviewing some of my journals from 2005-2008. Of note? Varied and various hypocrisies, as it never seems to occur to me that I bear some sort of journalistic responsibility toward my CRPS confrères -- the same sort of responsibility I so excitedly place as a burden on others' shoulders:

This morning, I've been reading through old diary entries. Not much is worth salvaging. Now and then, I actually got beyond the lint in my navel. For example, last June, I went off on Cynthia Toussaint and her repugnant attempts to designate CRPS as "the suicide disease."

Before I spout off in this odd temporal fold of today and yesteryear, let me say that Toussaint's work on behalf of people with CRPS and, particularly, for her Women-in-Pain Initiative, has been a grand and noteworthy "awareness raising."

It just now occurs to me that you might not know who she is. This is the biography posted on her website:

Cynthia Toussaint serves as Spokesperson at For Grace and has had Complex Regional Pain Syndrome for 26 years. She founded the organization in 2002
originally to raise awareness about the disease, and later developed
fibromyalgia as an over-lapping condition. Before becoming ill, she was an
accomplished ballerina and worked professionally as a dancer, actor and singer.

Since 1997, she has been a leading advocate for women in pain, raising
awareness through local, national and worldwide media as well as public
speaking. Toussaint championed and gave key testimony at two California Senate
hearings. The first in May 2001 was dedicated to CRPS awareness. The second in
February 2004 explored the chronic under treatment of and gender bias toward
women in pain (the impetus behind For Grace’s expanded mission.) Both of these
efforts were the first of their kind in the nation. Toussaint was the first CRPS
sufferer to be featured in the New York Times and Los Angeles Times, and on
Public Broadcasting System and National Public Radio. She is a consultant for
ABC News and PainPathways, the official magazine of the World Institute of Pain.

Also, Toussaint continues to be a leading advocate for health care
reform in California. She was instrumental in changing public opinion which led
to sweeping HMO reform legislation that was signed by Governor Gray Davis in
1999. Her focus has now shifted to bringing a single-payer, universal health
care plan to all in California which will provide a model for the rest of the
country.

JUNE 12, 2008: on the rss feed today, i picked up another cynthia toussaint interview article. she is introduced to readers as someone suffering with crps/rsd – and then she blithely elaborates that it is called “the suicide disease.” that’s maybe an opinion best kept under wraps, eh? maybe i am dense, maybe a little bit touchy, but i really feel like it is not something to promote.

[APRIL 3, 2009: I am in no way a spokesperson on behalf of people with CRPS/RSD. The fact that it runs like a viscous leitmotif through this boggy blog? Okay. Well, maybe I do have a responsibility: the same responsibility inherent in any use of language. In my various woe-is-me-esque posts on the disorder, haven't I also exaggerated, haven't I played the pity card? Am I comfortable with the notion of someone newly diagnosed reading this entry from January, for instance, perhaps hoping for substantive information, or even feeble encouragement, and not for my rapier wit?

I entered "the suicide disease" into Google search and discovered that Trigeminal Neuralgia now holds the crown and sceptor. My opinion of Wikipedia took a dive when I read this: "TN is called 'The suicide disease.' In fact: for those who live with Trigeminal Neuralgia for more than 3 years about half commit suicide.[citation needed]"

It's a Throwdown! Who is dead? From what? And when did they know it? Mister Mustard! In the library! With a candlestick!

Damn straight a frigging citation is needed when alleging that half of those with TN (I love the clinical addition of "for more than 3 years") kill themselves. Given that many people consult the internet about their illnesses, and given that not all who do so have the necessary intellectual or emotional reserves to filter out the nonsense, this kind of thing is beyond irresponsible. As you scan down the results page of your "suicide disease" search, you can see the insidious path of the Wikipedia statement -- and I would hate to be a newly diagnosed TN patient faced with this outrageous stuff. I don't know whether TN is akin, or perhaps a subset, to CRPS, but it's likely. What is this my-disease-is-the-most-painful-ever competition about, anyway? Who'd want to "win"?]

cynthia toussaint feels compelled to promulgate this designation of "the suicide disease," and i have not run into a better example of media manipulation (except by the fringe right). by repeating her initial assertion, it takes on the status of truth, and of all the things that she ought to want known as TRUE about crps/rsd, *that* doesn't even rank! does she not think about the potential impact on someone who is newly diagnosed, or on someone who contemplates having to care for a loved one with this disease?

about herself, she writes (from her internationally known website -- the for grace foundation):

"In 1982, I was a 21-year-old ballerina when a minor ballet injury triggered the chronic pain disease, Reflex Sympathetic Dystrophy, also known as the “Suicide Disease.” For the first thirteen years of my illness, my doctors told me my physical problems were “all in my head” while the RSD spread throughout my entire body, leaving me bedridden and screaming in pain for nearly a decade – a pain that felt as if I had been doused with gasoline and lit on fire."

the allusion to gasoline and fire is also part of the Official CRPS Hyperbole. support groups tend to use flames as part of their symbology -- on tee-shirts, mugs, decals.

on the other hand, it actually does feels like being set afire sometimes -- except that i've no idea what being set afire feels like. we so want to be singular, special. the fish we caught, the mountain we climbed, the test we aced, the suffering we do...

unbelievably, ABC news did a series on "killer jobs: 10 painful professions," and used toussaint's experience as exemplar to make the case for ballet dancing. See how the suicide reference somehow magically appears!

Toussaint developed Reflex Sympathy Dystrophy, otherwise known as "suicide disease." RSD begins as pain limited to the region of the injury often leavingsomeone unable to move that part of his or her body. The pain spreads over timeto all parts of the body. Doctors are generally able to treat RSD within a year
of diagnosis. However, Toussaint was not diagnosed with RSD until she had spent
15 years in a wheelchair after her injury.

i forgot to mention -- she also moves her self-kill assertion from the narrow confines of CRPS to include all painful conditions: "Suicide is common for women in severe pain." oh, the hubris.

inclusion and diversity are grand.

a rap upon the knuckles of the beautiful and talented ms. toussaint, and a wink of approval for all her advocacy work.

April 3,2009: Sad to say, but one of the foremost authorities on CRPS also asserts that suicide is common among patients. Dr. Anthony Kirkpatrick wrote, in a complaint to the AMA, "I have personally witnessed patients with RSD/CRPS lose hope and commit suicide following denial of authorization for care by insurance carriers." The AMA, at the time, required eight concurrant objective findings for the diagnosis of CRPS, and that was what the complaint was about. He continues:

"As RSD progresses over time, especially without treatment, the syndrome tends to become more unresponsive to treatment. Hence, early diagnosis and treatment are imperative. RSD can remain localized to one region of the body indefinitely. In other cases, it spreads to large segments of the body spontaneously or by trauma leading to permanent deformities and widespread immobility of limbs. At an advanced stage of the illness, all patients develop significant psychiatric problems and narcotic dependency, and are left completely incapacitated. Some commit suicide."

In what now clearly is the voice of reason, Linda Lang wrote an article for the RSDSA newsletter, titled "The Taboo of Suicide."

Although a literature search reveals claims that CRPS/RSD patients have an extraordinarily high incidence of suicide, and a CRPS/RSD patient actually read testimony into a Subcommittee on Health in June of 2001, saying that CRPS/RSD leads to death and the leading cause of that death is suicide, there is absolutely no evidence to support these statements, in fact there are no statistics at all on CRPS/RSD and suicide. When asked about it in 2001, Dr. Robert Schwartzman said, "…there is no data on RSD and suicide. It clearly happens and is almost always attributed to other causes." He adds that out of 73,500 patients, he has had only three that he is sure did commit suicide.

Linda put out an alert through RSDSA, "asking anyone with CRPS/RSD who had seriously attempted suicide, thought about suicide, or knew of someone with the disease who had committed suicide to contact me. Within three hours I had 50 responses. The results of this very informal survey were very revealing. The most interesting to me was that there were just about an equal amount of responses from males and females. About 15% said they had made serious suicide attempts... Most of the responses were from people who said they thought about suicide with some frequency, though they doubted they would ever go through with it. Some felt that CRPS/RSD had taken away so much control from their own lives that thinking about suicide was a way of reclaiming that control, of feeling that if things ever got to be too much they could be in charge of their own body again by ending their lives. This was presented as a comforting thought, and actually helped them live more successfully with the CRPS/RSD. Others said that their religion prevented them from killing themselves. Many of those who contemplate suicide seem to already have established some kind of lifeline to help them."

So it's complicated. And disturbing. I tend to believe that having CRPS inevitably causes psychiatric illness; That is very scary and depressing, in and of itself. Suicide can be inviting in the middle of the night when nothing helps the pain and lack of sleep makes it sound like an option, an out. Love, money, friends, family, sanity -- each leaks out of the CRPS like a sieve.

One almost doesn't comprehend suicide's finality. Or care.