Re: A Tale of Two Controversies

[Guest guest]

Wow, this is so profound, it could have been me you were describing

regarding being shunned at group after group, or turned away by

doctor after doctor.

Lately I have been consumed with this thought:

It is not the terrorist who will be the demise of our world as we

know it. It is the alarming rate of those who turn their head when

they don't like what they see. Those who see wrong and don't say a

word, the complacency is what is growing like cancer.

I thought our generation was " enlightened " It seemed on the outside

that we tackled all kinds of discrimination. We no longer speak ill

of others in relation to race, gender, religion and a host of other

no-no's. It was so silent it almost sneaks up on you, but I do

believe there is another discrimination brewing in our land. It seems

that the new attack is on the disabled. We are shunned and if not

outwardly, certainly in hidden agendas we are told to go home and

close our drapes, for the world doesn't want to deal with the

infirmed.If they can't make us afraid, then they will shame us into

silence.

Most shocking to me was the treatment I received from members of a

church. I became inconvenient, they said. I found others having the

same response.It seems as though we are an embarrassment, for if you

are on a prayer list just a bit too long, they wonder why God isn't

answering your prayer for healing. Yes, I was told it might be better

to take my name off the prayer list, cause it was causing others to

ask many questions,like " wonder why she is being punished. "

I hope you take your words far and wide, if we don't speak up now,

look at what we are leaving to our children.\

My doctor confirmed that in all emerging diseases, it is accepted

that a generation will be forfeited before help arrives. I'm afraid

that two generations will be lost if our voice is not heard.

Peg

> The importance of pain management in Lyme disease should not be

> controversial. Yet it is, because we are standing here at the

> intersection of two highly dubious " controversies " in our modern

> systems of " managed care. "

>

> 1) The Lyme controversy

>

> The first controversy concerns Lyme disease, an epidemic which no

> one except Lyme patients and Lyme-literate physicians seems willing

> to acknowledge. The CDC has conceded the reality of the epidemic,

> but done so in a backhanded fashion that leaves key questions like

> the seriousness of this illness unaddressed.

>

> Alan Steere and his Yale colleagues have made an organized effort

to

> downplay both the debilitating nature of Lyme disease and the

> difficulties that arise in treating it. Various explanations for

> this odd behavior on the part of the CDC and invidual physicians

> like Steere have been offered, but do not concern us here. What

> matters is the carefully fostered, and unfortunately widespread

view

> that Lyme disease is an easily managed disease that poses no great

> threat to public health.

>

> 2) The Chronic Pain controversy

>

> The second controversy concerns chronic pain, another " silent

> epidemic " kept hidden not by the reclusive nature of its sufferers

> but by an organized effort to deny or downplay well-established

> facts. Several studies have found that chronic pain in the United

> States is routinely undertreated. Case histories that could tear

> your heart out are recited at conference after conference, in

> Congressional testimony, just as they are when the subject is Lyme

> disease.

>

> While in Lyme disease the great sins of public policy are largely

> sins of omission, failures to come to terms with a frank epidemic,

> in the area of chronic pain the sins are more aggressive. The

> federal government uses our tax dollars to make effective pain

> treatment more difficult for doctors to prescribe. The government

> does this not on any medical basis but in the name of " the war on

> drugs. "

>

> If all wars have their " collateral damage, " a euphemism for

innocent

> lives destroyed, chronic pain patients have been the principle

> victims of the war on drugs. Organized crime, by contrast, reaps

> enormous profits from this war and is arguably the main beneficiary

> of its existence.

>

> 3) Where controversies converge, patients become invisible

>

> These two controversies converge in the treatment of Lyme disease

> patients who present with severe, chronic pain. There are few

> categories a patient can find him- or herself in, that carry a

> comparable stigma or are less likely to be dealt with effectively

by

> the medical profession.

>

> There are many doctors who know Lyme is real and serious but will

> have nothing to do with it. The same is true for chronic pain.

> Unfortunately, character traits do come into play here and a

> physician who is comfortable turning a cold shoulder to Lyme

> patients is all too likely to manifest the same lack of empathy

when

> presented with severe chronic pain.

>

> So we are talking about a problem whose true significance is in no

> way reflected by current standard practice, which goes unrecognized

> by physicians and as a result is unreported and not accurately

> characterized by current health statistics. We know there is a more

> Lyme disease, and more undertreated chronic pain, than anyone

> realizes. How large the two pools of patients are, and how far they

> overlap, is regrettably a matter of speculation, but for those who

> find such things helpful we can say with some confidence that we

are

> looking at not tens or hundreds of thousands but millions of

> suffering human beings.

>

> 4) When the door is closed for any of us, the room it opens into

> becomes less fit to live in.

>

> These things were true before I became ill, and I fear they may

> still be true when I have either recovered or perished in the

> effort. They have been the key determinants of the care I've

> received - and more importantly NOT received - to date. Because my

> illness partakes of these two controversies, physicians and

> bureaucrats are often at pains to explain to me that their failure

> to provide relief is " nothing personal. "

>

> The experience of seeking care in this context has been for me, and

> for many others, profoundly DE-personalizing. If I try to discuss

> this in medical forums, I may be told that I am upsetting their

> focus with " political " concerns. If I try to bring it up in

> political forums, I am asked why I am dragging my personal medical

> problems into matters of public concern.

>

> I tend to think questions with this kind of orphan status, that no

> matter where one takes them are always referred somewhere else,

tell

> us things about ourselves and the times in which we live that we

> can't learn any other way.

>

> An obscure woman, apparently guilty of getting pregnant by someone

> other than her husband, goes door to door, seeking a place to lie

> down and give birth. No one has room. For Christians, this story

> describes the arrival in the world of the messiah, possessed of

> truths which no human being can afford to ignore. In this very

> Christian country of ours, there continues to be " no room at the

> inn " for those who lack the good fortune to suffer from an approved

> condition.

>

> Every tale of woe contains the seeds of its own redemption. If one

> believes, as I do, in the essential relatedness of humanity, the

> redemption of any one person's suffering can lighten the burden of

> suffering for all. It is this promise, born anew every time another

> human being enters the world, which we reject, under cover of

> controversy. It is no wonder that our institutions are not fit for

> human habitation, when one considers those who are barred from

> entering.

>

>

[Guest guest]

Dear Peg, I think you are right. I have felt in my bones, since I

was very young, that the poet got it right about the end of the

world who said,

" The best lack all conviction

" The worst are full of passionate intensity. "

I don't think of it as being two groups of people, but two

tendencies. The best impulses we have as human beings are so stymied

and bewildered by our world today that they have largely been

rendered impotent. Our worst impulses, unfortunately, finding

nothing but encouragement.

Despite that gloomy assessment on my part, I have always felt a lot

of hope about our prospects. I still do. Because despite the adverse

character of the times, I see people daily drawing on what is best

in them. I see it here, on this list, in people like you.

Poets read the headlines of the future, but as human beings, however

anonymous or insignficant we feel, we are the ones who write those

headlines. And what I read here and in other forums where people

grapple with hard situations is actually very good news about the

state of the human heart.

I'm not talking religion when I say that for me, we really do belong

to one body, each cell of which registers everything that happens to

every other cell. That's not religious faith, that is an almost

physical knowing, an impression etched in my DNA and shared by those

I feel close to, in my biological family and the much larger family

I have acquired in life.

The body of humanity, in case anyone hadn't noticed, is having a

very long bad day, and the mind is about as agitated and divided as

anyone can remember seeing it. The sick are more likely to see their

own state of health reflected in this world than the healthy, and

most world leaders have such conspicuous signs of late-stage,

neurological Lyme disease that I wouldn't even bother with an Igenex

test, just praise the Lord and pass the antibiotics.

But the state of the human heart requires more effort to discern,

one has to be willing to sink all the way down to the lowest depths

of one's own feelings, and then ascend to their loftiest heights, in

order to tap those vast, oceanic currents. Some of us can't help but

try, and our reports - which may or may not be expressed poetically -

make better reading than any daily newspaper.

Honestly. If someone wants a daily reconnect with reality, they're

more likely to find it on I & I than they are watching the evening

news. The nightmares that are blandly reported there are real

enough, but nothing about the way they are conveyed does tribute to

that reality.

One is better off listening to the masses, than their media. The

masses, who when one looks closely are not shapeless " masses " at all

but intricately connected members of a shared venture in being.

I feel a similar connection with the natural world. Even the

borrelia tell me they are unhappy at what's become of them, they had

not really intended to bring about a worsening of the very

tendencies that that have made us all so susceptible to Lyme disease

and other plagues in the first place.

I sometimes allow myself the possibility that the borrelia come

bearing a gift, as well as a curse, though I could not tell you in

words what I mean by that, and would sound crazier than I am if I

tried.

Your friend,

> > The importance of pain management in Lyme disease should not be

> > controversial. Yet it is, because we are standing here at the

> > intersection of two highly dubious " controversies " in our modern

> > systems of " managed care. "

> >

> > 1) The Lyme controversy

> >

> > The first controversy concerns Lyme disease, an epidemic which

no

> > one except Lyme patients and Lyme-literate physicians seems

willing

> > to acknowledge. The CDC has conceded the reality of the

epidemic,

> > but done so in a backhanded fashion that leaves key questions

like

> > the seriousness of this illness unaddressed.

> >

> > Alan Steere and his Yale colleagues have made an organized

effort

> to

> > downplay both the debilitating nature of Lyme disease and the

> > difficulties that arise in treating it. Various explanations for

> > this odd behavior on the part of the CDC and invidual physicians

> > like Steere have been offered, but do not concern us here. What

> > matters is the carefully fostered, and unfortunately widespread

> view

> > that Lyme disease is an easily managed disease that poses no

great

> > threat to public health.

> >

> > 2) The Chronic Pain controversy

> >

> > The second controversy concerns chronic pain, another " silent

> > epidemic " kept hidden not by the reclusive nature of its

sufferers

> > but by an organized effort to deny or downplay well-established

> > facts. Several studies have found that chronic pain in the

United

> > States is routinely undertreated. Case histories that could tear

> > your heart out are recited at conference after conference, in

> > Congressional testimony, just as they are when the subject is

Lyme

> > disease.

> >

> > While in Lyme disease the great sins of public policy are

largely

> > sins of omission, failures to come to terms with a frank

epidemic,

> > in the area of chronic pain the sins are more aggressive. The

> > federal government uses our tax dollars to make effective pain

> > treatment more difficult for doctors to prescribe. The

government

> > does this not on any medical basis but in the name of " the war

on

> > drugs. "

> >

> > If all wars have their " collateral damage, " a euphemism for

> innocent

> > lives destroyed, chronic pain patients have been the principle

> > victims of the war on drugs. Organized crime, by contrast, reaps

> > enormous profits from this war and is arguably the main

beneficiary

> > of its existence.

> >

> > 3) Where controversies converge, patients become invisible

> >

> > These two controversies converge in the treatment of Lyme

disease

> > patients who present with severe, chronic pain. There are few

> > categories a patient can find him- or herself in, that carry a

> > comparable stigma or are less likely to be dealt with

effectively

> by

> > the medical profession.

> >

> > There are many doctors who know Lyme is real and serious but

will

> > have nothing to do with it. The same is true for chronic pain.

> > Unfortunately, character traits do come into play here and a

> > physician who is comfortable turning a cold shoulder to Lyme

> > patients is all too likely to manifest the same lack of empathy

> when

> > presented with severe chronic pain.

> >

> > So we are talking about a problem whose true significance is in

no

> > way reflected by current standard practice, which goes

unrecognized

> > by physicians and as a result is unreported and not accurately

> > characterized by current health statistics. We know there is a

more

> > Lyme disease, and more undertreated chronic pain, than anyone

> > realizes. How large the two pools of patients are, and how far

they

> > overlap, is regrettably a matter of speculation, but for those

who

> > find such things helpful we can say with some confidence that we

> are

> > looking at not tens or hundreds of thousands but millions of

> > suffering human beings.

> >

> > 4) When the door is closed for any of us, the room it opens into

> > becomes less fit to live in.

> >

> > These things were true before I became ill, and I fear they may

> > still be true when I have either recovered or perished in the

> > effort. They have been the key determinants of the care I've

> > received - and more importantly NOT received - to date. Because

my

> > illness partakes of these two controversies, physicians and

> > bureaucrats are often at pains to explain to me that their

failure

> > to provide relief is " nothing personal. "

> >

> > The experience of seeking care in this context has been for me,

and

> > for many others, profoundly DE-personalizing. If I try to

discuss

> > this in medical forums, I may be told that I am upsetting their

> > focus with " political " concerns. If I try to bring it up in

> > political forums, I am asked why I am dragging my personal

medical

> > problems into matters of public concern.

> >

> > I tend to think questions with this kind of orphan status, that

no

> > matter where one takes them are always referred somewhere else,

> tell

> > us things about ourselves and the times in which we live that we

> > can't learn any other way.

> >

> > An obscure woman, apparently guilty of getting pregnant by

someone

> > other than her husband, goes door to door, seeking a place to

lie

> > down and give birth. No one has room. For Christians, this story

> > describes the arrival in the world of the messiah, possessed of

> > truths which no human being can afford to ignore. In this very

> > Christian country of ours, there continues to be " no room at the

> > inn " for those who lack the good fortune to suffer from an

approved

> > condition.

> >

> > Every tale of woe contains the seeds of its own redemption. If

one

> > believes, as I do, in the essential relatedness of humanity, the

> > redemption of any one person's suffering can lighten the burden

of

> > suffering for all. It is this promise, born anew every time

another

> > human being enters the world, which we reject, under cover of

> > controversy. It is no wonder that our institutions are not fit

for

> > human habitation, when one considers those who are barred from

> > entering.

> >

> >