A Tale of Two Atrocities
Jan. 5th, 2007 03:21 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
willowispIn my penultimate entry I mused that I only wrote when unhappy and/or whining. This is not going to be the entry to correct that statement.
Asperger's is a condition in which effects what I broadly call "senses"; not the five usually mentioned, but instead "sense of time", "sense of direction", "sense of propriety", "sense of tact", and so on. The medical research community is vehemently divided on what exactly it is. All agree that it is on the austism spectrum. For some, that is all it is. For others, it is autism, and "autism" can be freely interchanged with "Asperger's". I have witnessed firsthand the passion with which each side believes its case. If someone reading this does fall strongly on one side or other, please refrain from debating the point here. For the purposes of this entry both sides are valid and correct, and religious wars are not one of the atrocities I'm writing about.
I am also aware that many people believe Asperger's is not a valid condition; that people use it to excuse rudeness, lateness, laziness, and a whole laundry list of similarly endearing qualities. Unlike strep throat, which can be diagnosed by a bacteria culture; or a broken arm which can be diagnosed via an X-ray, there is no single definitive test for Asperger's. In fact, most anyone can probably identify with several of the symptoms, and in a way the diagnosis has to do with how much it impacts a person's social and work life. That being said, I was diagnosed by two doctors within the University of New Mexico Neurosciences department, both of whom specialize in Asperger's in children. If you believe that this is not good enough than feel free to consider me a lazy, rude, always-late person hiding behind the current fad diagnosis, but please leave your opinion of the validity of the condition and/or the diagnosis out of any comments.
Thank you in advance.
Anyone who knows me knows I'm a bit messed up. I doubt it will surprise anyone to discover that I have been under psychiatrists' and psychologists' care. For those who are curious, I have been since seeing some counselors at UNC, which![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
callicrates attended for his PhD. Upon moving to Albuquerque a psychologist named Nancy Parker-Davidson was highly recommended, and I became her patient. She listened to my tales of getting lost constantly, and of having digestive problems, of having trouble connecting with others or knowing when to shut up, and who occasionally had to look up some word I spouted off like some robotic dictionary, and quite a few other things. She is the one who, after hearing all of these, looked around and found out that I had an overwhelming overlap of symptoms with a condition called Asperger's.
She helped beat insurance into covering the testing therefor and, once the diagnosis was in, she began helping me with coping strategies to alleviate the worst of the symptoms. There was some trial and error, but by and large many of her suggestions were spot on, and as far as I know Andy has found some of the solutions to be adequate. As a side note, my husband is very much aware of the psychiatry and psychology; we don't keep secrets like that from one another. In fact, he would sometimes come with me to Nancy's when he needed something translated into a form I could understand. For not seeing him on a regular basis, she was able to peg his concerns and needs readily and to help me understand them.
On late December 31st or early January 1st, she and her significant other were fatally shot in what police are calling a road rage incident.
A lot of stuff released in the press so far is vague; some believe Linda (Nancy's SO) cut off the man wanted as a "person of interest" in a similar murder in Texas, and that after crashing he followed them to a stop light and killed them. Some who know them better believe they may have seen the crash and stopped to help, as both were wont to do, and thus became victims of convenience.
Any which way, Albuquerque has lost women who took in homeless animals and cared for them; who volunteered for animal shelters and who were part of a therapy animal program (the mascot is a pit bull who has one of the happiest, silliest, biggest canine smiles I've ever seen, and I've been around a lot of Australian Shepherds); who provided mental health care for battered women and for the homeless. They lost a unique psychotherapist with grounding in early neuroscience; Nancy was interested in it in its infancy, but decided she could do more good in therapy. While many (most?) psychologists tend to lean toward finding the cause and working on it or working on the effects, she did both equally.
Andy and I are both devastated. We found out before the names were officially released, which is one reason it took me so long to post about this. The other is that I'm just too shell-shocked still. Most of the family deaths I've been through in the past five or six years have been the type wherein death is expected sooner rather than later, and the type wherein death marked the end of suffering. This came out of nowhere. I'm still not even sure I've fully registered the death; it all seems very abstract now.
And all because someone couldn't, or simply wouldn't, control his temper.
My best friend, Heather, was diagnosed with inflammatory breast cancer. For those not aware of the distinction between that and the more common type, the very over-simplified version is that the form she has is rarely (if ever) visible in mammograms, and it is asymptomatic until it has invaded the lymph system, at which point it is usually misdiagnosed as mastitis. In the more common type of breast cancer the battle is kill the cancer before it spreads; in inflammatory it already has spread. Inflammatory is also highly resistant to burning, excision, and poisoning (better known as radiation, surgery, and chemotherapy).
When last I posted, Heather had been seen at Duke, which isn't currently studying that strain of cancer. They suggested a treatment and also advised that she and her husband, Denny, concentrate on quality of life. For those who've never been close to a person with terminal illness, "quality of life" is a nice way of saying "do everything you ever wanted to, because there is nothing we can do". From your random local doctor this may not be so grim, but from a university doing the groundbreaking research, it's far more final.
A few days ago Denny and Heather got a phone call. The research center in Houston, according to Denny the only one actively working on inflammatory breast cancer, had decided to consider her case. The phone call came not from a doctor or nurse or patient advocate, but from the business office. They informed Denny that they would be getting Heather's records from her oncologist, but not consulting with him at all. In fact, they were planning on re-visiting the initial biopsy at their full rates.
They wanted Denny's information, the kind student loan companies take for skip tracing, things like relatives they can harass if you default. Yes, slightly bitter, but I spent three months in a temporary job skip-tracing, and it was not a customer-friendly job. At any rate, they also demanded he fax his insurance information. When he asked why they couldn't just photocopy it at check-in, they said it was so they could pre-authorize. It seems most insurance companies, even those which care about the patients, balk at their fees. Indeed, they needed to know exactly how much of the $12,500 initial consultation fee Heather would need to have in hand if she wanted to be seen at all. Nor would they say if they had any treatment plans or even if they thought it could be treated, only that they would tell her after the consultation.
I know a lot of wonderful doctors; men and women who truly care about the patients as people as well as clients; people liketurnberryknkn who flail at the idea of turning anyone who needs care away for any reason, especially the lack of ability to pay. I also know, from doctor friends, how much college costs and how much in debt most doctors start based on student loans alone. I know malpractice insurance rates are insane due to frivolous lawsuits, and that many medical insurance companies and HMOs are slime who exploit those they cover and mock the doctors with the compensation they provide. Nancy had to deal with a nightmare of that sort when Andy's employers switched to a "lowest bidder" insurance company.
That being said, what happened to Heather and Denny infuriates me beyond belief. Even knowing all of the above paragraph, I cannot believe a $12,500 initial consultation fee; a consultation which might last five minutes at the doctor's whim. I cannot believe they won't even tell Denny and Heather if they are doing this because they have a plan for treatment. And how can they live with themselves knowing that if Heather can't come up with their extortion money, they are sentencing a wonderful, vibrant, real person to death and robbing Denny of the love of his life (his own words), three little girls of their mother, and many others of a dear friend?
I'm not by any means saying they should do this for free; and I can even understand it being a for-profit rather than a strict research clinic. But still, they are with no exaggeration the only hope for Heather now, if they even have the hope to offer. She probably has less than a year left and so very much to live for, and they know she will do what she has to to get that consultation, and so they're exploiting her with a possibility.
It is just that kind of cold, impersonal greed which I can't understand. In light of Enron and other companies not smart enough not to be caught it's clear that to these businesses people, whether clients, employees, or patients, are not living beings but instead sources of income. How can someone dehumanize others so much that money the someone doesn't even need becomes more important than the actual lives of others?
If Heather and Denny can't come up with the money, then she is as much a murder victim as Nancy is. It's just that Nancy was murdered in a fit of rage, whereas Heather will be murdered due to callous inaction.
I've spent the last few days in conflict. My gut tells me I need to throw up; my gut instinct says I need to throw things. Thank goodness for Final Fantasy XI, which allows me to kill bestial quasi-humans and semi-sentient plants instead of the proxies I'm assigning them, all with no fear of jail time.
Asperger's is a condition in which effects what I broadly call "senses"; not the five usually mentioned, but instead "sense of time", "sense of direction", "sense of propriety", "sense of tact", and so on. The medical research community is vehemently divided on what exactly it is. All agree that it is on the austism spectrum. For some, that is all it is. For others, it is autism, and "autism" can be freely interchanged with "Asperger's". I have witnessed firsthand the passion with which each side believes its case. If someone reading this does fall strongly on one side or other, please refrain from debating the point here. For the purposes of this entry both sides are valid and correct, and religious wars are not one of the atrocities I'm writing about.
I am also aware that many people believe Asperger's is not a valid condition; that people use it to excuse rudeness, lateness, laziness, and a whole laundry list of similarly endearing qualities. Unlike strep throat, which can be diagnosed by a bacteria culture; or a broken arm which can be diagnosed via an X-ray, there is no single definitive test for Asperger's. In fact, most anyone can probably identify with several of the symptoms, and in a way the diagnosis has to do with how much it impacts a person's social and work life. That being said, I was diagnosed by two doctors within the University of New Mexico Neurosciences department, both of whom specialize in Asperger's in children. If you believe that this is not good enough than feel free to consider me a lazy, rude, always-late person hiding behind the current fad diagnosis, but please leave your opinion of the validity of the condition and/or the diagnosis out of any comments.
Thank you in advance.
Anyone who knows me knows I'm a bit messed up. I doubt it will surprise anyone to discover that I have been under psychiatrists' and psychologists' care. For those who are curious, I have been since seeing some counselors at UNC, which
callicrates attended for his PhD. Upon moving to Albuquerque a psychologist named Nancy Parker-Davidson was highly recommended, and I became her patient. She listened to my tales of getting lost constantly, and of having digestive problems, of having trouble connecting with others or knowing when to shut up, and who occasionally had to look up some word I spouted off like some robotic dictionary, and quite a few other things. She is the one who, after hearing all of these, looked around and found out that I had an overwhelming overlap of symptoms with a condition called Asperger's.She helped beat insurance into covering the testing therefor and, once the diagnosis was in, she began helping me with coping strategies to alleviate the worst of the symptoms. There was some trial and error, but by and large many of her suggestions were spot on, and as far as I know Andy has found some of the solutions to be adequate. As a side note, my husband is very much aware of the psychiatry and psychology; we don't keep secrets like that from one another. In fact, he would sometimes come with me to Nancy's when he needed something translated into a form I could understand. For not seeing him on a regular basis, she was able to peg his concerns and needs readily and to help me understand them.
On late December 31st or early January 1st, she and her significant other were fatally shot in what police are calling a road rage incident.
A lot of stuff released in the press so far is vague; some believe Linda (Nancy's SO) cut off the man wanted as a "person of interest" in a similar murder in Texas, and that after crashing he followed them to a stop light and killed them. Some who know them better believe they may have seen the crash and stopped to help, as both were wont to do, and thus became victims of convenience.
Any which way, Albuquerque has lost women who took in homeless animals and cared for them; who volunteered for animal shelters and who were part of a therapy animal program (the mascot is a pit bull who has one of the happiest, silliest, biggest canine smiles I've ever seen, and I've been around a lot of Australian Shepherds); who provided mental health care for battered women and for the homeless. They lost a unique psychotherapist with grounding in early neuroscience; Nancy was interested in it in its infancy, but decided she could do more good in therapy. While many (most?) psychologists tend to lean toward finding the cause and working on it or working on the effects, she did both equally.
Andy and I are both devastated. We found out before the names were officially released, which is one reason it took me so long to post about this. The other is that I'm just too shell-shocked still. Most of the family deaths I've been through in the past five or six years have been the type wherein death is expected sooner rather than later, and the type wherein death marked the end of suffering. This came out of nowhere. I'm still not even sure I've fully registered the death; it all seems very abstract now.
And all because someone couldn't, or simply wouldn't, control his temper.
My best friend, Heather, was diagnosed with inflammatory breast cancer. For those not aware of the distinction between that and the more common type, the very over-simplified version is that the form she has is rarely (if ever) visible in mammograms, and it is asymptomatic until it has invaded the lymph system, at which point it is usually misdiagnosed as mastitis. In the more common type of breast cancer the battle is kill the cancer before it spreads; in inflammatory it already has spread. Inflammatory is also highly resistant to burning, excision, and poisoning (better known as radiation, surgery, and chemotherapy).
When last I posted, Heather had been seen at Duke, which isn't currently studying that strain of cancer. They suggested a treatment and also advised that she and her husband, Denny, concentrate on quality of life. For those who've never been close to a person with terminal illness, "quality of life" is a nice way of saying "do everything you ever wanted to, because there is nothing we can do". From your random local doctor this may not be so grim, but from a university doing the groundbreaking research, it's far more final.
A few days ago Denny and Heather got a phone call. The research center in Houston, according to Denny the only one actively working on inflammatory breast cancer, had decided to consider her case. The phone call came not from a doctor or nurse or patient advocate, but from the business office. They informed Denny that they would be getting Heather's records from her oncologist, but not consulting with him at all. In fact, they were planning on re-visiting the initial biopsy at their full rates.
They wanted Denny's information, the kind student loan companies take for skip tracing, things like relatives they can harass if you default. Yes, slightly bitter, but I spent three months in a temporary job skip-tracing, and it was not a customer-friendly job. At any rate, they also demanded he fax his insurance information. When he asked why they couldn't just photocopy it at check-in, they said it was so they could pre-authorize. It seems most insurance companies, even those which care about the patients, balk at their fees. Indeed, they needed to know exactly how much of the $12,500 initial consultation fee Heather would need to have in hand if she wanted to be seen at all. Nor would they say if they had any treatment plans or even if they thought it could be treated, only that they would tell her after the consultation.
I know a lot of wonderful doctors; men and women who truly care about the patients as people as well as clients; people like
turnberryknkn who flail at the idea of turning anyone who needs care away for any reason, especially the lack of ability to pay. I also know, from doctor friends, how much college costs and how much in debt most doctors start based on student loans alone. I know malpractice insurance rates are insane due to frivolous lawsuits, and that many medical insurance companies and HMOs are slime who exploit those they cover and mock the doctors with the compensation they provide. Nancy had to deal with a nightmare of that sort when Andy's employers switched to a "lowest bidder" insurance company.That being said, what happened to Heather and Denny infuriates me beyond belief. Even knowing all of the above paragraph, I cannot believe a $12,500 initial consultation fee; a consultation which might last five minutes at the doctor's whim. I cannot believe they won't even tell Denny and Heather if they are doing this because they have a plan for treatment. And how can they live with themselves knowing that if Heather can't come up with their extortion money, they are sentencing a wonderful, vibrant, real person to death and robbing Denny of the love of his life (his own words), three little girls of their mother, and many others of a dear friend?
I'm not by any means saying they should do this for free; and I can even understand it being a for-profit rather than a strict research clinic. But still, they are with no exaggeration the only hope for Heather now, if they even have the hope to offer. She probably has less than a year left and so very much to live for, and they know she will do what she has to to get that consultation, and so they're exploiting her with a possibility.
It is just that kind of cold, impersonal greed which I can't understand. In light of Enron and other companies not smart enough not to be caught it's clear that to these businesses people, whether clients, employees, or patients, are not living beings but instead sources of income. How can someone dehumanize others so much that money the someone doesn't even need becomes more important than the actual lives of others?
If Heather and Denny can't come up with the money, then she is as much a murder victim as Nancy is. It's just that Nancy was murdered in a fit of rage, whereas Heather will be murdered due to callous inaction.
I've spent the last few days in conflict. My gut tells me I need to throw up; my gut instinct says I need to throw things. Thank goodness for Final Fantasy XI, which allows me to kill bestial quasi-humans and semi-sentient plants instead of the proxies I'm assigning them, all with no fear of jail time.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2007-01-06 06:22 pm (UTC)no subject
Date: 2007-01-06 06:51 pm (UTC)no subject
Date: 2007-01-06 07:46 pm (UTC)no subject
Date: 2007-01-06 08:06 pm (UTC)The behavior of the "hospital" absolutely astounds and confuses me. I understand money has to be made in order for research to continue - sadly, this is the way the economy of the world in general works. But how can people not understand that by automatically limiting their subject based on ability to pay hurts their research itself more than it benefits their pocket book? For goodness sake, they knock out potential excellent subjects before they even get a chance to look at them, making their research pool smaller and therefore limiting the scope.
Of course, if they are the only ones bothering to research this death sentance, then I guess they get all the potential folks they need, because desperation makes people do insane things for money. And those who won't can go hang...
It makes those few doctors who are truly in it for the good of the patients that much more precious - like Nancy, making her loss not just a personal tragedy for which I am very sorry, but a tragedy to medicine as well. Of course, I also know that the freedom to take patients on whatever terms you like is limited mainly to those in private practice, and the doctors in this case are probably much less to blame than the hospital administrators in charge of the research department. Those are the criminals in this story.
Blah. And *HUGS*.
-K
no subject
Date: 2007-01-06 10:34 pm (UTC)Incidentally, no one we both know thinks this.
no subject
Date: 2007-01-06 10:45 pm (UTC)*big hugs*
I'm sorry for all of this. Life is so unfair. :(
no subject
Date: 2007-01-06 11:07 pm (UTC)no subject
Date: 2007-01-06 11:13 pm (UTC)$12 500? WTF? How can they justify that? As you say, it's pure and simple extortion. I assume that's just the consultation and not the tests etc etc etc.
You know what I'd do? I'd send that story to the media, just as you've written it. Or to your local friendly politician if you think that'd help. That is just appalling.
Regarding Nancy: I'm so sorry I haven't emailed you since I've heard. I've been thinking about you, and hoping you've been OK. You are very much in my thoughts.
no subject
Date: 2007-01-07 05:52 am (UTC)Please check the Inflammatory Breast Cancer Update for more information on I.B.C.:
http://inflammatorybreastcancerupdate.blogspot.com/
Tell your friend to be as aggressive as possible in her treatment. I.B.C takes no prisoners. I wish her good luck.
no subject
Date: 2007-01-07 01:58 pm (UTC)no subject
Date: 2007-01-07 06:01 pm (UTC)