Re: On living in pain: Some thoughts for the dark night of the soul

February 15, 2005

Wonderful quotes, .

Thank you.

On living in pain: Some thoughts for the dark night

of the soul

" Severe chronic pain is a state of bondage so total

and so hard for nonsufferers to imagine that they

simply cannot understand why sometimes those in pain

would sometimes rather die than continue living

without relief . . . . Sensing that they are alone,

sensing that the rest of us tend to judge them

unfairly or unkindly, pain patients crave validation

nearly as keenly as they crave physical release . . .

. Lacking power, chronic pain patients tend to be

overly solicitous, to beseech, to implore or feign

gratitude when they feel indignation. They do this

because they are afraid they will not get the

treatment they need.

" Often, that treatment is an opioid analgesic. Abuse,

prejudice, and ignorance have put a strong stigma on

this class of medication, adding to the patient's

woes. While most patients on a regimen of opioid

analgesics report overwhelming relief, some still

regard these medications with suspicion, failing to

understand the important distinction between

tolerance, physical dependence, and addiction.

Tolerance is the body's need for an increasing

quantity of a medication in order to achieve the same

therapeutic effect. Physical dependence, by contrast,

is a known effect of certain types of medication and

is characterized by symptoms of withdrawal that differ

among medicines, be they sleep aids, opioid

analgesics, blood pressure medications (some of which

result in physical dependence and some of which do

not), or the caffeine in our daily cup of joe.

Medically speaking, physical dependence is not

considered to be either positive or negative.

" Addiction is a different issue entirely. It is a

primary, chronic disease influenced by psychosocial

and environmental factors. It is also strongly

genetic. Addicts are not made from people who do not

have the appropriate genetic makeup. Exposure to pain

medications, or to alcohol, for that matter, does not

create addicts. Addiction requires more than that. It

is a biological affliction that demands, at least,

both exposure and predisposition. Pseudoaddiction is a

syndrome in which patients who desperately seek relief

from an undertreated pain mimic the behavior of those

seeking drugs for different reasons, and this merely

clouds the picture. *People in genuine chronic pain

suffer the more because these distinctions are not

generally understood.*

" Whatever the organic cause of the pain, or the mode

of treatment, the voices [of people afflicted with

such pain] ring with courage and demand compassion. "

-- Arthur Rosenfeld, MD, *The Truth About

Chronic Pain: Patients and Professionals on How to

Face It, Understand It, Overcome It,* pp. 1-3

" At times one can only recognize courage after having

done many acts of courage over a long period of time.

People who see this person do not realize the courage

he needs to continue to do all that he is doing. This

is the courage of many survivors of World War II who

lost their entire families and had to start a new

life. This is the courage of someone who suffers from

chronic physical pain and with supreme effort

continues on with life . . . . this courageous

individual could be you. "

-- Rabbi Zelig Pliskin, *Courage: Formulas,

Stories and Insights*, pp. 17-18

Beloved Feisty Fighters,

I promised you the preceding quotes a few weeks ago

but trust you will understand and forgive the delay.

I do not know how some of us hang on at times. But I

have to believe that, together, we can continue to do

so.

We draw courage from one another.

Because of you, I know that I am not alone. I hope

from my heart that you have this same consoling

knowledge.

I thank you all from the depths -- from my depths --

for your loving, sustaining presence in my life.

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

February 19, 2005

Thanks so much, Sharon. It doesn't look as though anyone else

responded. Lots of times, I imagine, people might like (or dislike)

something but just not feel like posting their reaction.

I have been compiling a book of quotations and excerpts for people

struggling with long-term pain, spinal problems, and the like. I

try to cull these from all kinds of different sources:

autobiographical sketches of traumatized people from arts magaines

or Buddhist periodicals, interviews in newsletters aimed at

disability advocates, conversations from scripts of indie movies I

happen to view at 2 or 3 a.m.

Actually I am interested in learning whether a book (ANOTHER book!)

like this would interest our Feisty members. I am considering adding

my own BRIEF commentary to each quotation and making the book a

quote-a-day resource -- something to keep on your bedside table or a

corner of your computer desk year round and browse through for some

quick uplift, or to check for " today's special message. "

" You are not screwed up. You are having an unscrewed-up reaction to

a screwed-up situation. " -- Christian Slater as Harry, a.k.a. Mark,

a Paradise Hills, AZ, deejay and high school student in *Pump Up the

Volume.*

" If I keep a green bough in my heart, the singing bird will come. "

-- Chinese proverb

Thanks again for the feedback, Sharon.

, " Sharon Green "

<sharon.green18@v...> wrote:

> Wonderful quotes, .

>

> Thank you.

>

> On living in pain: Some thoughts for

the dark night of the soul

>

> " Severe chronic pain is a state of bondage so total

> and so hard for nonsufferers to imagine that they

> simply cannot understand why sometimes those in pain

> would sometimes rather die than continue living

> without relief . . . . Sensing that they are alone,

> sensing that the rest of us tend to judge them

> unfairly or unkindly, pain patients crave validation

> nearly as keenly as they crave physical release . . .

> . Lacking power, chronic pain patients tend to be

> overly solicitous, to beseech, to implore or feign

> gratitude when they feel indignation. They do this

> because they are afraid they will not get the

> treatment they need.

>

> " Often, that treatment is an opioid analgesic. Abuse,

> prejudice, and ignorance have put a strong stigma on

> this class of medication, adding to the patient's

> woes. While most patients on a regimen of opioid

> analgesics report overwhelming relief, some still

> regard these medications with suspicion, failing to

> understand the important distinction between

> tolerance, physical dependence, and addiction.

> Tolerance is the body's need for an increasing

> quantity of a medication in order to achieve the same

> therapeutic effect. Physical dependence, by contrast,

> is a known effect of certain types of medication and

> is characterized by symptoms of withdrawal that differ

> among medicines, be they sleep aids, opioid

> analgesics, blood pressure medications (some of which

> result in physical dependence and some of which do

> not), or the caffeine in our daily cup of joe.

> Medically speaking, physical dependence is not

> considered to be either positive or negative.

>

> " Addiction is a different issue entirely. It is a

> primary, chronic disease influenced by psychosocial

> and environmental factors. It is also strongly

> genetic. Addicts are not made from people who do not

> have the appropriate genetic makeup. Exposure to pain

> medications, or to alcohol, for that matter, does not

> create addicts. Addiction requires more than that. It

> is a biological affliction that demands, at least,

> both exposure and predisposition. Pseudoaddiction is a

> syndrome in which patients who desperately seek relief

> from an undertreated pain mimic the behavior of those

> seeking drugs for different reasons, and this merely

> clouds the picture. *People in genuine chronic pain

> suffer the more because these distinctions are not

> generally understood.*

>

> " Whatever the organic cause of the pain, or the mode

> of treatment, the voices [of people afflicted with

> such pain] ring with courage and demand compassion. "

>

> -- Arthur Rosenfeld, MD, *The Truth About

> Chronic Pain: Patients and Professionals on How to

> Face It, Understand It, Overcome It,* pp. 1-3

>

> " At times one can only recognize courage after having

> done many acts of courage over a long period of time.

> People who see this person do not realize the courage

> he needs to continue to do all that he is doing. This

> is the courage of many survivors of World War II who

> lost their entire families and had to start a new

> life. This is the courage of someone who suffers from

> chronic physical pain and with supreme effort

> continues on with life . . . . this courageous

> individual could be you. "

>

> -- Rabbi Zelig Pliskin, *Courage: Formulas,

> Stories and Insights*, pp. 17-18

>

> Beloved Feisty Fighters,

>

> I promised you the preceding quotes a few weeks ago

> but trust you will understand and forgive the delay.

>

> I do not know how some of us hang on at times. But I

> have to believe that, together, we can continue to do

> so.

>

> We draw courage from one another.

>

> Because of you, I know that I am not alone. I hope

> from my heart that you have this same consoling

> knowledge.

>

> I thank you all from the depths -- from my depths --

> for your loving, sustaining presence in my life.

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control

ads or endorse any advertised products.

>

February 19, 2005

That does sound like a good idea, .

http://www.amazon.com/exec/obidos/tg/detail/-/0897932188/ref=pd_rhf_p_1/103-4371\

758-2871846?v=glance & s=books & n=283155 & no=*

I have yet to read the above-linked book, but it might also give you a little

inspiration. It was recommended to me by the co-leader of a local MS support

group, who was in an online MS group with the author.

It made me think of Feisty, and of all the helpful and cathartic writing that

goes on here.

I am dubious that I'm ready for this book as a new (probable) MS patient, but

may read it for interest's sake (once I've got life a bit better under control).

Sharon

Re: On living in pain: Some thoughts for the dark

night of the soul

Thanks so much, Sharon. It doesn't look as though anyone else

responded. Lots of times, I imagine, people might like (or dislike)

something but just not feel like posting their reaction.

I have been compiling a book of quotations and excerpts for people

struggling with long-term pain, spinal problems, and the like. I

try to cull these from all kinds of different sources:

autobiographical sketches of traumatized people from arts magaines

or Buddhist periodicals, interviews in newsletters aimed at

disability advocates, conversations from scripts of indie movies I

happen to view at 2 or 3 a.m.

Actually I am interested in learning whether a book (ANOTHER book!)

like this would interest our Feisty members. I am considering adding

my own BRIEF commentary to each quotation and making the book a

quote-a-day resource -- something to keep on your bedside table or a

corner of your computer desk year round and browse through for some

quick uplift, or to check for " today's special message. "

" You are not screwed up. You are having an unscrewed-up reaction to

a screwed-up situation. " -- Christian Slater as Harry, a.k.a. Mark,

a Paradise Hills, AZ, deejay and high school student in *Pump Up the

Volume.*

" If I keep a green bough in my heart, the singing bird will come. "

-- Chinese proverb

Thanks again for the feedback, Sharon.

February 19, 2005

,

I confess that as much as possible I keep my head buried in the sand

and try to pretend I'm not in any pain and that neither is anyone

else that I know or care about. But for the times when my head is

out of the sand, I think a book like that would be nice for people in

pain to know that they are not alone. Thank you for posting the

quotations.

Unfortunately, being on a rather tight budget, I myself generally

don't buy any books at all. I borrow from the library, though.

loriann

>

> Thanks so much, Sharon. It doesn't look as though anyone else

> responded. Lots of times, I imagine, people might like (or dislike)

> something but just not feel like posting their reaction.

>

> I have been compiling a book of quotations and excerpts for people

> struggling with long-term pain, spinal problems, and the like. I

> try to cull these from all kinds of different sources:

> autobiographical sketches of traumatized people from arts magaines

> or Buddhist periodicals, interviews in newsletters aimed at

> disability advocates, conversations from scripts of indie movies I

> happen to view at 2 or 3 a.m.

>

> Actually I am interested in learning whether a book (ANOTHER book!)

> like this would interest our Feisty members. I am considering

adding

> my own BRIEF commentary to each quotation and making the book a

> quote-a-day resource -- something to keep on your bedside table or

a

> corner of your computer desk year round and browse through for some

> quick uplift, or to check for " today's special message. "

>

> " You are not screwed up. You are having an unscrewed-up reaction to

> a screwed-up situation. " -- Christian Slater as Harry, a.k.a. Mark,

> a Paradise Hills, AZ, deejay and high school student in *Pump Up

the

> Volume.*

>

> " If I keep a green bough in my heart, the singing bird will come. "

> -- Chinese proverb

>

> Thanks again for the feedback, Sharon.

>

February 19, 2005

Coming from someone who has used books like this in the past and

still use one to this day, I think it is a great idea. The one I

still rely heavily on is the Each Day a New Beginning book that some

recovering alcoholics/drug addicts use in place of the 24 Hours a

Day book. Each page has a day for each day of the year, and there

is a passage written for each day. It is uplifiting and has helped

me to get through many days. Having a book that would relate to the

pain I experience or just the downright frustration of having to

live in this body of mine would be a refreshing addition.

I look forward to being able to get my hands on your book when it is

completed.

> > Wonderful quotes, .

> >

> > Thank you.

> >

> > On living in pain: Some thoughts for

> the dark night of the soul

> >

> > " Severe chronic pain is a state of bondage so total

> > and so hard for nonsufferers to imagine that they

> > simply cannot understand why sometimes those in pain

> > would sometimes rather die than continue living

> > without relief . . . . Sensing that they are alone,

> > sensing that the rest of us tend to judge them

> > unfairly or unkindly, pain patients crave validation

> > nearly as keenly as they crave physical release . . .

> > . Lacking power, chronic pain patients tend to be

> > overly solicitous, to beseech, to implore or feign

> > gratitude when they feel indignation. They do this

> > because they are afraid they will not get the

> > treatment they need.

> >

> > " Often, that treatment is an opioid analgesic. Abuse,

> > prejudice, and ignorance have put a strong stigma on

> > this class of medication, adding to the patient's

> > woes. While most patients on a regimen of opioid

> > analgesics report overwhelming relief, some still

> > regard these medications with suspicion, failing to

> > understand the important distinction between

> > tolerance, physical dependence, and addiction.

> > Tolerance is the body's need for an increasing

> > quantity of a medication in order to achieve the same

> > therapeutic effect. Physical dependence, by contrast,

> > is a known effect of certain types of medication and

> > is characterized by symptoms of withdrawal that differ

> > among medicines, be they sleep aids, opioid

> > analgesics, blood pressure medications (some of which

> > result in physical dependence and some of which do

> > not), or the caffeine in our daily cup of joe.

> > Medically speaking, physical dependence is not

> > considered to be either positive or negative.

> >

> > " Addiction is a different issue entirely. It is a

> > primary, chronic disease influenced by psychosocial

> > and environmental factors. It is also strongly

> > genetic. Addicts are not made from people who do not

> > have the appropriate genetic makeup. Exposure to pain

> > medications, or to alcohol, for that matter, does not

> > create addicts. Addiction requires more than that. It

> > is a biological affliction that demands, at least,

> > both exposure and predisposition. Pseudoaddiction is a

> > syndrome in which patients who desperately seek relief

> > from an undertreated pain mimic the behavior of those

> > seeking drugs for different reasons, and this merely

> > clouds the picture. *People in genuine chronic pain

> > suffer the more because these distinctions are not

> > generally understood.*

> >

> > " Whatever the organic cause of the pain, or the mode

> > of treatment, the voices [of people afflicted with

> > such pain] ring with courage and demand compassion. "

> >

> > -- Arthur Rosenfeld, MD, *The Truth About

> > Chronic Pain: Patients and Professionals on How to

> > Face It, Understand It, Overcome It,* pp. 1-3

> >

> > " At times one can only recognize courage after having

> > done many acts of courage over a long period of time.

> > People who see this person do not realize the courage

> > he needs to continue to do all that he is doing. This

> > is the courage of many survivors of World War II who

> > lost their entire families and had to start a new

> > life. This is the courage of someone who suffers from

> > chronic physical pain and with supreme effort

> > continues on with life . . . . this courageous

> > individual could be you. "

> >

> > -- Rabbi Zelig Pliskin, *Courage: Formulas,

> > Stories and Insights*, pp. 17-18

> >

> > Beloved Feisty Fighters,

> >

> > I promised you the preceding quotes a few weeks ago

> > but trust you will understand and forgive the delay.

> >

> > I do not know how some of us hang on at times. But I

> > have to believe that, together, we can continue to do

> > so.

> >

> > We draw courage from one another.

> >

> > Because of you, I know that I am not alone. I hope

> > from my heart that you have this same consoling

> > knowledge.

> >

> > I thank you all from the depths -- from my depths --

> > for your loving, sustaining presence in my life.

> >

> > Support for scoliosis-surgery veterans with Harrington Rod

> Malalignment Syndrome. Not medical advice. Group does not control

> ads or endorse any advertised products.

> >

February 23, 2005

Thanks so much, Sharon.

I can see why you might want to wait to explore a book like this

one, dealing with the MS experience. I am very careful about

rationing and censoring my own reading and viewing, depending on my

current mood or outlook!

This kind of book does sound like a good idea for some readers who

might like to have online material collected in one compendium of

the " best and the brightest " or whatever. I have considered doing

something like this with the Feisty posts and supplemental

materials. The problem is that the most common unifying factor at

this group, iatrogenic fixed sagittal imbalance, is relatively rare

(in terms of incidence and prevalence in the general population). I

am just not sure the readership is there.

I would consider preparing an anthology of contributions with the

consent of those participating and under a more generic " topic-

heading, " such as Scoliosis-Surgery Survivors. Or maybe we could

take a cue from the prognosis so many of us got as kids graduating

from casts and fusions. . . I'm thinking of a title something like

this:

*But the Surgeon Said I Was Cured . . . 300 Women Share the Real

Facts of Life After Scoliosis Surgery*

Some possible chapter titles:

Plastered All the Time . . . The " Coming-Out Party " . . . Decades of

Denial . . . " Something Is Not Right " : Surfing Toward Sanity . . .

well, you get the picture, and probably have wittier ideas of your

own.

As fun as this is to contemplate for me, it is probably kind of

visionary. I just don't know if the market is there for a topic as

delimited as ours.

That is why I was actually veering toward something much more

modest, a collection of inspirational quotes with some of my own

commentaries appended -- targeted to all kinds of people facing all

kinds of orthopedic trauma, deformity, and reconstructive surgery. I

still need to define how this will differ from a zillion other books

of " pocket positives, " journals of " simple abundance, " calendars and

collections of anecdotes relating to no-sweat " small stuff, "

personalized chicken soup, etc.

Returning to your own ideas for a moment, I certainly welcome any

feeback others may have on the whole idea of " yet another scoli

book. " If the group were interested in something along those lines,

I would certainly considerr spearheading such a project, perhaps in

conjunction with others here who have similar publishing experience.

On the other hand, this group itself actually emerged from the

FAILURE of an effort abot five years ago to set up a kind of task

force/steering committee to further the motley (as it turned out)

goals of a diverse group of us with flatback syndrome. We had too

many queens, no cooks and bottlewashers. Suzy Habibi did a wonderful

job of setting up a comprehensive database, and Jennie Boatman was a

terrific troubleshooter and " resident interpersonal expert, " and a

couple other great women made it a good experience. Nonetheless, I

had my hands full, mostly, dealing with daily deluges of email from

the majority of my fellow feisty chairs and self-appointed leader --

each of whom had a drastically different idea from everyone else

with regard to how the group should function and what it should do.

In fact, most of the emails I was getting were dictatorial orders

and directives instructing me on such vital subjecects as how to set

up a mandatory instant-message chat (using an ISP to which only one

person had access), commanding me to enforce parliamentary procedure

on all committee members per *'s Rules of Order,* instructing

me to interview some persons in another state or region regarding

their successful media campaign and fundraising effort involving

another disease (one limited to children, as I recall), prior to

raising ample funds for lots more research into the etiology of

scoliosis . . . eventually I pooped out, resigned as chairman, and

started this forum instead.

I guess what I am trying to say is that I am not especially

comfortable with " team " projects, at least when the team is a group

of " scoliosis overachiever " types such as yours truly! I expect I

will do best to plod along with my own little individual book of

quotes, at least for now.

Personally, I feel life is looking more promising these days. I

expect to have better pain control within the next month or so. I

continue to trek through the jungles and deserts of the managed-care

bureacracy . . . but we are now close to finalizing (knock on wood)

a date and details re the Medtronic pump implantation, or at least

the pre-pump trial of intrathecally delivered medication, which I

plan to undergo in the next couple weeks or so. Assuming this is as

helpful as I expect it to be (judging from a previous trial of

intrathecal medication in 1999), I am planning on a more active and

productive existence very soon. Meanwhile, I will continue to cull

my upbeat quotes . . .

Best,

> That does sound like a good idea, .

>

> http://www.amazon.com/exec/obidos/tg/detail/-

/0897932188/ref=pd_rhf_p_1/103-4371758-2871846?

v=glance & s=books & n=283155 & no=*

>

> I have yet to read the above-linked book, but it might also give

you a little inspiration. It was recommended to me by the co-leader

of a local MS support group, who was in an online MS group with the

author.

>

> It made me think of Feisty, and of all the helpful and cathartic

writing that goes on here.

>

> I am dubious that I'm ready for this book as a new (probable) MS

patient, but may read it for interest's sake (once I've got life a

bit better under control).

>

> Sharon

>

> Re: On living in pain: Some thoughts

for the dark night of the soul

>

> Thanks so much, Sharon. It doesn't look as though anyone else

> responded. Lots of times, I imagine, people might like (or

dislike)

> something but just not feel like posting their reaction.

>

> I have been compiling a book of quotations and excerpts for

people

> struggling with long-term pain, spinal problems, and the like.

I

> try to cull these from all kinds of different sources:

> autobiographical sketches of traumatized people from arts

magaines

> or Buddhist periodicals, interviews in newsletters aimed at

> disability advocates, conversations from scripts of indie movies

I

> happen to view at 2 or 3 a.m.

>

> Actually I am interested in learning whether a book (ANOTHER

book!)

> like this would interest our Feisty members. I am considering

adding

> my own BRIEF commentary to each quotation and making the book a

> quote-a-day resource -- something to keep on your bedside table

or a

> corner of your computer desk year round and browse through for

some

> quick uplift, or to check for " today's special message. "

>

> " You are not screwed up. You are having an unscrewed-up reaction

to

> a screwed-up situation. " -- Christian Slater as Harry, a.k.a.

Mark,

> a Paradise Hills, AZ, deejay and high school student in *Pump Up

the

> Volume.*

>

> " If I keep a green bough in my heart, the singing bird will

come. "

> -- Chinese proverb

>

> Thanks again for the feedback, Sharon.

>

February 23, 2005

,

Wasn't it Rick who said " ya can't please everyone, so

you got to please yourself... " ?

But (since you asked) I, for one, like your idea of a combination of

the inspirational quotes, plus your own commentaries, and maybe even

some of your favorite feisty ones. You do a lot more reading than I

do (and the only thing I ever helped publish was a handbook for

students and employees where I worked and some newlsetters, but I'm

not a bad bottle washer...) but I'm thinking that such a thing, if

geared toward all people with disabilities or challenging medical

problems (not just orthopedic ones), might stand out from the sheer

fact that it's more focused than a general chicken soup type book,

but not as narrow as just another scoli book. I guess you need to

look at your purpose in writing. Is it to appeal/sell to a wide

audience, or is it to benefit a specific niche audience, and if so

how narrow? Personally what I take away from this feisty group is

much more than support and info. on scoli/flatback. It's amazing in

how many ways the insight and advice I get from reading this Feisty

group is similar to the groups that I follow for my hip problems and

my syringomyelia problems. Not the technical stuff, of course, or

the shared distant past stuff, but the deeper, supportive, inner

strength, inspirational and cameraderie stuff.

You reminded me that I am disappointed that with all the focus on

medical issues that the media has (gosh, even most of my local news

stations have dedicated " medical reporters " and " medical-minutes "

portions to their broadcasts) that the flatback diagnosis hasn't

gotten more attention. I keep trying to think of the best angle to

get us on Oprah. Does anyone who has had revision surgery have any

dramatic " before " and " after " pictures that we could send them? Ha,

I've got some real horrid " before " ones of me, but the " after " ones

won't be available for a couple of years, and even then, only if I

get lucky enough to have a successful revision procedure.

Enough of my opinions and ramblings. Mostly I wanted to write and

say good luck with the Medtronic pump installation. The prospect of

you with a significant reduction is pain would sure be a wonderful

thing! Take care,

loriann

>

> Thanks so much, Sharon.

>

> I can see why you might want to wait to explore a book like this

> one, dealing with the MS experience. I am very careful about

> rationing and censoring my own reading and viewing, depending on my

> current mood or outlook!

>

> This kind of book does sound like a good idea for some readers who

> might like to have online material collected in one compendium of

> the " best and the brightest " or whatever. I have considered doing

> something like this with the Feisty posts and supplemental

> materials. The problem is that the most common unifying factor at

> this group, iatrogenic fixed sagittal imbalance, is relatively rare

> (in terms of incidence and prevalence in the general population). I

> am just not sure the readership is there.

>

> I would consider preparing an anthology of contributions with the

> consent of those participating and under a more generic " topic-

> heading, " such as Scoliosis-Surgery Survivors. Or maybe we could

> take a cue from the prognosis so many of us got as kids graduating

> from casts and fusions. . . I'm thinking of a title something like

> this:

>

> *But the Surgeon Said I Was Cured . . . 300 Women Share the Real

> Facts of Life After Scoliosis Surgery*

>

> Some possible chapter titles:

>

> Plastered All the Time . . . The " Coming-Out Party " . . . Decades

of

> Denial . . . " Something Is Not Right " : Surfing Toward Sanity . . .

> well, you get the picture, and probably have wittier ideas of your

> own.

>

> As fun as this is to contemplate for me, it is probably kind of

> visionary. I just don't know if the market is there for a topic as

> delimited as ours.

>

> That is why I was actually veering toward something much more

> modest, a collection of inspirational quotes with some of my own

> commentaries appended -- targeted to all kinds of people facing all

> kinds of orthopedic trauma, deformity, and reconstructive surgery.

I

> still need to define how this will differ from a zillion other

books

> of " pocket positives, " journals of " simple abundance, " calendars

and

> collections of anecdotes relating to no-sweat " small stuff, "

> personalized chicken soup, etc.

>

> Returning to your own ideas for a moment, I certainly welcome any

> feeback others may have on the whole idea of " yet another scoli

> book. " If the group were interested in something along those lines,

> I would certainly considerr spearheading such a project, perhaps in

> conjunction with others here who have similar publishing experience.

>

> On the other hand, this group itself actually emerged from the

> FAILURE of an effort abot five years ago to set up a kind of task

> force/steering committee to further the motley (as it turned out)

> goals of a diverse group of us with flatback syndrome. We had too

> many queens, no cooks and bottlewashers. Suzy Habibi did a

wonderful

> job of setting up a comprehensive database, and Jennie Boatman was

a

> terrific troubleshooter and " resident interpersonal expert, " and a

> couple other great women made it a good experience. Nonetheless, I

> had my hands full, mostly, dealing with daily deluges of email from

> the majority of my fellow feisty chairs and self-appointed leader --

> each of whom had a drastically different idea from everyone else

> with regard to how the group should function and what it should do.

> In fact, most of the emails I was getting were dictatorial orders

> and directives instructing me on such vital subjecects as how to

set

> up a mandatory instant-message chat (using an ISP to which only one

> person had access), commanding me to enforce parliamentary

procedure

> on all committee members per *'s Rules of Order,* instructing

> me to interview some persons in another state or region regarding

> their successful media campaign and fundraising effort involving

> another disease (one limited to children, as I recall), prior to

> raising ample funds for lots more research into the etiology of

> scoliosis . . . eventually I pooped out, resigned as chairman, and

> started this forum instead.

>

> I guess what I am trying to say is that I am not especially

> comfortable with " team " projects, at least when the team is a group

> of " scoliosis overachiever " types such as yours truly! I expect I

> will do best to plod along with my own little individual book of

> quotes, at least for now.

>

> Personally, I feel life is looking more promising these days. I

> expect to have better pain control within the next month or so. I

> continue to trek through the jungles and deserts of the managed-

care

> bureacracy . . . but we are now close to finalizing (knock on wood)

> a date and details re the Medtronic pump implantation, or at least

> the pre-pump trial of intrathecally delivered medication, which I

> plan to undergo in the next couple weeks or so. Assuming this is as

> helpful as I expect it to be (judging from a previous trial of

> intrathecal medication in 1999), I am planning on a more active and

> productive existence very soon. Meanwhile, I will continue to cull

> my upbeat quotes . . .

>

> Best,

>

February 24, 2005

Loriann,

Thanks so much for your thoughtful insights. Your analysis of the

main decision (wide appeal vs. niche market) is " right on the

money, " double-entendre not wholly intended.

I share your feeling about the value of groups like this one. The

medical facts we exchange are often very important in terms of

knowledge-sharing, but the less technical content -- the ongoing

help in " keeping going " that we somehow manage to extend to one

another -- is indescribably uplifting and sustaining in a way that

might have more universal appeal.

You also raise the point, though, that it is not just THIS group --

I have to assume that all kinds of other online forums are equally

helpful to their members in the same general way. Once you start

contemplating some kind of book that would abstract from more than

one group, however, yikes! That would be a massive project even for

some scholar of " the phenomenon of Internet support groups. " We may

need to think some more about how to widen AND narrow the focus of

our hypothetical book. (Hmm, maybe we should make it an " expandable

e-book, " somehow linking it to its own reader-forum for comments and

other posts?)

As for getting on " Oprah " -- oy, tell me about it! I know I am not

the only participant in this group who has given it my best shot,

emailing the producers once if not twice . . . I think the photos

you envision might help a great deal to " sell " the concept, if we

had 'em.

The best sign I've seen so far is that article about the woman with

flatback, from a recent issue of a yoga magazine, which both

and I have referenced in this group. I thought it was a real

watershed, getting a whole article on the travails of a HARMS

sufferer and survivor into a national, glossy-type magazine.

I would love to see a powerful and effective media campaign to

inform more people about flatback syndrome and revision surgery, not

to mention the lives of those who traverse this strange new world

beyond childhood scoliosis surgery with Harrington instrumentation.

(Not that we are all identical by any means -- I, for one, got my

lovely lumbar Harrington instrumentation as an adult.)

Unfortunately the Internet scoliosis community is not

entirely " together, " or maybe I am just not too swift when it comes

to making the right connections. I have tried several times to

connect with the NSF, for instance -- I love their newsletter, but

my own offers to write for it do not seem to get any reply, despite

my fairly decent CV (former medical news writer for JAMA, managing

editor of Medical World News, numerous free-lance credits,etc.)

(Sometimes I wonder if it's my law degree that puts people off! But

I have also served on the editorial board of the Journal of Health &

Hospital Law, and my legal publishing credits are in pretty

reputable " establishment " journals, primarily of the forensic-psych.

ilk.) So I basically just try to make sure I give other NSF

stalwarts all the " good press " they deserve from my own little

corner of the scoli world here at " Feisty, " and I believe they

likewise send an occasional flatbacker our way for further

information and support.

If anyone gets on Oprah (besides you and me, of course!), I would

hope it might be a representative group of us from the whole broad

spectrum of flatback patients, outstanding and articulate revision

surgeons, scoliosis organizations and Internet sites concerned with

this problem, et al.

As you can see, I have more questions than conclusions re any of

this. Again, I VERY much appreciate your own excellent " input. " I

hope we can keep the dialogue going.

Best,

> >

> > Thanks so much, Sharon.

> >

> > I can see why you might want to wait to explore a book like this

> > one, dealing with the MS experience. I am very careful about

> > rationing and censoring my own reading and viewing, depending on

my

> > current mood or outlook!

> >

> > This kind of book does sound like a good idea for some readers

who

> > might like to have online material collected in one compendium

of

> > the " best and the brightest " or whatever. I have considered

doing

> > something like this with the Feisty posts and supplemental

> > materials. The problem is that the most common unifying factor

at

> > this group, iatrogenic fixed sagittal imbalance, is relatively

rare

> > (in terms of incidence and prevalence in the general

population). I

> > am just not sure the readership is there.

> >

> > I would consider preparing an anthology of contributions with

the

> > consent of those participating and under a more generic " topic-

> > heading, " such as Scoliosis-Surgery Survivors. Or maybe we could

> > take a cue from the prognosis so many of us got as kids

graduating

> > from casts and fusions. . . I'm thinking of a title something

like

> > this:

> >

> > *But the Surgeon Said I Was Cured . . . 300 Women Share the Real

> > Facts of Life After Scoliosis Surgery*

> >

> > Some possible chapter titles:

> >

> > Plastered All the Time . . . The " Coming-Out Party " . . .

Decades

> of

> > Denial . . . " Something Is Not Right " : Surfing Toward

Sanity . . .

> > well, you get the picture, and probably have wittier ideas of

your

> > own.

> >

> > As fun as this is to contemplate for me, it is probably kind of

> > visionary. I just don't know if the market is there for a topic

as

> > delimited as ours.

> >

> > That is why I was actually veering toward something much more

> > modest, a collection of inspirational quotes with some of my own

> > commentaries appended -- targeted to all kinds of people facing

all

> > kinds of orthopedic trauma, deformity, and reconstructive

surgery.

> I

> > still need to define how this will differ from a zillion other

> books

> > of " pocket positives, " journals of " simple abundance, " calendars

> and

> > collections of anecdotes relating to no-sweat " small stuff, "

> > personalized chicken soup, etc.

> >

> > Returning to your own ideas for a moment, I certainly welcome

any

> > feeback others may have on the whole idea of " yet another scoli

> > book. " If the group were interested in something along those

lines,

> > I would certainly considerr spearheading such a project, perhaps

in

> > conjunction with others here who have similar publishing

experience.

> >

> > On the other hand, this group itself actually emerged from the

> > FAILURE of an effort abot five years ago to set up a kind of

task

> > force/steering committee to further the motley (as it turned out)

> > goals of a diverse group of us with flatback syndrome. We had

too

> > many queens, no cooks and bottlewashers. Suzy Habibi did a

> wonderful

> > job of setting up a comprehensive database, and Jennie Boatman

was

> a

> > terrific troubleshooter and " resident interpersonal expert, " and

a

> > couple other great women made it a good experience. Nonetheless,

I

> > had my hands full, mostly, dealing with daily deluges of email

from

> > the majority of my fellow feisty chairs and self-appointed

leader --

>

> > each of whom had a drastically different idea from everyone else

> > with regard to how the group should function and what it should

do.

> > In fact, most of the emails I was getting were dictatorial

orders

> > and directives instructing me on such vital subjecects as how to

> set

> > up a mandatory instant-message chat (using an ISP to which only

one

> > person had access), commanding me to enforce parliamentary

> procedure

> > on all committee members per *'s Rules of Order,*

instructing

> > me to interview some persons in another state or region

regarding

> > their successful media campaign and fundraising effort involving

> > another disease (one limited to children, as I recall), prior to

> > raising ample funds for lots more research into the etiology of

> > scoliosis . . . eventually I pooped out, resigned as chairman,

and

> > started this forum instead.

> >

> > I guess what I am trying to say is that I am not especially

> > comfortable with " team " projects, at least when the team is a

group

> > of " scoliosis overachiever " types such as yours truly! I expect

I

> > will do best to plod along with my own little individual book of

> > quotes, at least for now.

> >

> > Personally, I feel life is looking more promising these days. I

> > expect to have better pain control within the next month or so.

I

> > continue to trek through the jungles and deserts of the managed-

> care

> > bureacracy . . . but we are now close to finalizing (knock on

wood)

> > a date and details re the Medtronic pump implantation, or at

least

> > the pre-pump trial of intrathecally delivered medication, which

I

> > plan to undergo in the next couple weeks or so. Assuming this is

as

> > helpful as I expect it to be (judging from a previous trial of

> > intrathecal medication in 1999), I am planning on a more active

and

> > productive existence very soon. Meanwhile, I will continue to

cull

> > my upbeat quotes . . .

> >

> > Best,

> >

February 24, 2005

Hi, !

I would definitely read anything you wrote, whether it were scoli-

focused or about living which chronic pain, disability, etc. I

actually haven't found too many book on scoli, particularly that

deal with anything longer than a chapter on living with it AFTER

surgery. Not to mention the after-effects that all of us live with.

However, I agree that whatever you write needs to be what you want

to write and what audience you are writing for. BTW - Love the title

you proposed *But the Surgeon Said I Was Cured . . . 300 Women Share

the Real Facts of Life After Scoliosis Surgery* I would buy several

copies with that title!

Deb M.

1989 Harrington Rod with fusion T3-L4

> > That does sound like a good idea, .

> >

> > http://www.amazon.com/exec/obidos/tg/detail/-

> /0897932188/ref=pd_rhf_p_1/103-4371758-2871846?

> v=glance & s=books & n=283155 & no=*

> >

> > I have yet to read the above-linked book, but it might also give

> you a little inspiration. It was recommended to me by the co-

leader

> of a local MS support group, who was in an online MS group with

the

> author.

> >

> > It made me think of Feisty, and of all the helpful and cathartic

> writing that goes on here.

> >

> > I am dubious that I'm ready for this book as a new (probable) MS

> patient, but may read it for interest's sake (once I've got life a

> bit better under control).

> >

> > Sharon

> >

> > Re: On living in pain: Some thoughts

> for the dark night of the soul

> >

> > Thanks so much, Sharon. It doesn't look as though anyone else

> > responded. Lots of times, I imagine, people might like (or

> dislike)

> > something but just not feel like posting their reaction.

> >

> > I have been compiling a book of quotations and excerpts for

> people

> > struggling with long-term pain, spinal problems, and the

like.

> I

> > try to cull these from all kinds of different sources:

> > autobiographical sketches of traumatized people from arts

> magaines

> > or Buddhist periodicals, interviews in newsletters aimed at

> > disability advocates, conversations from scripts of indie

movies

> I

> > happen to view at 2 or 3 a.m.

> >

> > Actually I am interested in learning whether a book (ANOTHER

> book!)

> > like this would interest our Feisty members. I am considering

> adding

> > my own BRIEF commentary to each quotation and making the book

a

> > quote-a-day resource -- something to keep on your bedside

table

> or a

> > corner of your computer desk year round and browse through for

> some

> > quick uplift, or to check for " today's special message. "

> >

> > " You are not screwed up. You are having an unscrewed-up

reaction

> to

> > a screwed-up situation. " -- Christian Slater as Harry, a.k.a.

> Mark,

> > a Paradise Hills, AZ, deejay and high school student in *Pump

Up

> the

> > Volume.*

> >

> > " If I keep a green bough in my heart, the singing bird will

> come. "

> > -- Chinese proverb

> >

> > Thanks again for the feedback, Sharon.

> >

February 24, 2005

,

I'm glad you mentioned the phenomenon of the internet support group.

I'm fascinated by that myself; and probably should start watching Dr.

Phil more because I would bet he's touched on some of the nuances of

it.

Re: Oprah. I'd be interested to hear what type things you mentioned

in your emails to her producers, if you remember. If I ever write to

them, I could either reinforce what you wrote or perhaps approach

them from a slightly different angle. I promise that if I ever get

invited on Oprah (yeah, right...), I'm taking as many of you with me

as possible, not just because I'm shy and nervous with public

appearances and would need the reinforcement, but because you all are

just so fantastically feisty, and the world should know that! I

definitely agree that a couple of the the docs who specialize in

flatback type surgeries would be a must, as well.

Re: The Yoga article. I also was pleased that it put forth a lot of

good information. Thinking back to my impressions when reading that

article, I wished that it had stressed more that there are many of us

like her. Also I noticed the article made it seem like the problem

stemmed from a " botching " of her original surgery. In my

opinion, " botched " isn't the word I would tend to use -- that was

simply the standard of treatment/care back then, and because of that,

all of us unfortunately now are forced to deal with the somewhat

delayed complications (flatback syndrome) of that past norm.

Please don't hesitate to tell me if you think I'm off base here. I'm

a Virgo, so I might just be tending to be overly critical!!

Re: The NSF group. Did they put out a newsletter (ha, I noticed I

spelled that word wrong in my previous post - good thing I'm not

publishing them any more, huh?) in 2004? I couldn't find it with

quick look at their website. I enjoy reading their patient forum,

but I don't know much else about the group. R. -- I know you

moderate those, are you involved with all the other aspects of that

group? (You've probably posted about this before, by my memory is

horrible!)

Speaking of yoga, I noticed there is a Yoga for Scoliosis video

mentioned on that NSF that might interest some in our group. Does

anybody have that one?

loriann

>

> Loriann,

>

> Thanks so much for your thoughtful insights. Your analysis of the

> main decision (wide appeal vs. niche market) is " right on the

> money, " double-entendre not wholly intended.

>

> I share your feeling about the value of groups like this one. The

> medical facts we exchange are often very important in terms of

> knowledge-sharing, but the less technical content -- the ongoing

> help in " keeping going " that we somehow manage to extend to one

> another -- is indescribably uplifting and sustaining in a way that

> might have more universal appeal.

>

> You also raise the point, though, that it is not just THIS group --

> I have to assume that all kinds of other online forums are equally

> helpful to their members in the same general way. Once you start

> contemplating some kind of book that would abstract from more than

> one group, however, yikes! That would be a massive project even for

> some scholar of " the phenomenon of Internet support groups. " We may

> need to think some more about how to widen AND narrow the focus of

> our hypothetical book. (Hmm, maybe we should make it an " expandable

> e-book, " somehow linking it to its own reader-forum for comments

and

> other posts?)

>

> As for getting on " Oprah " -- oy, tell me about it! I know I am not

> the only participant in this group who has given it my best shot,

> emailing the producers once if not twice . . . I think the photos

> you envision might help a great deal to " sell " the concept, if we

> had 'em.

>

> The best sign I've seen so far is that article about the woman with

> flatback, from a recent issue of a yoga magazine, which both

> and I have referenced in this group. I thought it was a real

> watershed, getting a whole article on the travails of a HARMS

> sufferer and survivor into a national, glossy-type magazine.

>

> I would love to see a powerful and effective media campaign to

> inform more people about flatback syndrome and revision surgery,

not

> to mention the lives of those who traverse this strange new world

> beyond childhood scoliosis surgery with Harrington instrumentation.

> (Not that we are all identical by any means -- I, for one, got my

> lovely lumbar Harrington instrumentation as an adult.)

>

> Unfortunately the Internet scoliosis community is not

> entirely " together, " or maybe I am just not too swift when it comes

> to making the right connections. I have tried several times to

> connect with the NSF, for instance -- I love their newsletter, but

> my own offers to write for it do not seem to get any reply, despite

> my fairly decent CV (former medical news writer for JAMA, managing

> editor of Medical World News, numerous free-lance credits,etc.)

> (Sometimes I wonder if it's my law degree that puts people off! But

> I have also served on the editorial board of the Journal of Health

&

> Hospital Law, and my legal publishing credits are in pretty

> reputable " establishment " journals, primarily of the forensic-

psych.

> ilk.) So I basically just try to make sure I give other NSF

> stalwarts all the " good press " they deserve from my own little

> corner of the scoli world here at " Feisty, " and I believe they

> likewise send an occasional flatbacker our way for further

> information and support.

>

> If anyone gets on Oprah (besides you and me, of course!), I would

> hope it might be a representative group of us from the whole broad

> spectrum of flatback patients, outstanding and articulate revision

> surgeons, scoliosis organizations and Internet sites concerned with

> this problem, et al.

>

> As you can see, I have more questions than conclusions re any of

> this. Again, I VERY much appreciate your own excellent " input. " I

> hope we can keep the dialogue going.

>

> Best,

>

February 24, 2005

Deb, you took the words right out of my mouth. Very cool title, .

It was just a thought. A daunting one. I certainly wouldn't have the energy to

try it.

Sharon

Re: On living in pain: Some thoughts for the dark

night of the soul

BTW - Love the title

you proposed *But the Surgeon Said I Was Cured . . . 300 Women Share

the Real Facts of Life After Scoliosis Surgery* I would buy several

copies with that title!

Deb M.

1989 Harrington Rod with fusion T3-L4

February 25, 2005

,

Reading Loriann's post and your response to her about your book idea, support

groups and Oprah, I began to think. Maybe an hour of discussing flatback is not

appealing to the Oprah producers, but isn’t the dynamics of the on-line support

group – women (well predominantly) coming together to support each other,

building friendships, planning symposiums and books and help for others, etc.

right up the “Oprah alley”? I think it would appeal to a broader audience and

would have a lighter more positive tone, while still bringing attention to what

flatback is all about.

, I truly believe you could write about cardboard and it would be

interesting. You have such ability. So I have no hesitation in saying that I

would certainly prefer a book that included your personal commentaries on

selected quotations more than just a book of quotes. I also feel that your

commentary and sharing of personal experiences would help readers understand

more academic writing or some of the Eastern Philosophy which I know you get a

lot from. I think it would be very valuable. I still am hoping you write that

screenplay too!!

So glad that your plans for the pain pump are moving along quicker and that you

feel your energy (mental and physical) is returning.

I have a lot of graphic design, illustration and type experience, so if you can

use help with that, let me know. BTW since this also came up, many years ago

(1989-1990 pre-Internet explosion), I took all the typewriter handouts at the

NSF and desktop published them in a more consistent format. I also did their

newsletter for them for a while.

Best to all,

Ann

__________________________________________________

February 28, 2005

Thanks, Deb! I found your letter very encouraging.

> > > That does sound like a good idea, .

> > >

> > > http://www.amazon.com/exec/obidos/tg/detail/-

> > /0897932188/ref=pd_rhf_p_1/103-4371758-2871846?

> > v=glance & s=books & n=283155 & no=*

> > >

> > > I have yet to read the above-linked book, but it might also

give

> > you a little inspiration. It was recommended to me by the co-

> leader

> > of a local MS support group, who was in an online MS group with

> the

> > author.

> > >

> > > It made me think of Feisty, and of all the helpful and

cathartic

> > writing that goes on here.

> > >

> > > I am dubious that I'm ready for this book as a new (probable)

MS

> > patient, but may read it for interest's sake (once I've got life

a

> > bit better under control).

> > >

> > > Sharon

> > >

> > > Re: On living in pain: Some

thoughts

> > for the dark night of the soul

> > >

> > > Thanks so much, Sharon. It doesn't look as though anyone

else

> > > responded. Lots of times, I imagine, people might like (or

> > dislike)

> > > something but just not feel like posting their reaction.

> > >

> > > I have been compiling a book of quotations and excerpts for

> > people

> > > struggling with long-term pain, spinal problems, and the

> like.

> > I

> > > try to cull these from all kinds of different sources:

> > > autobiographical sketches of traumatized people from arts

> > magaines

> > > or Buddhist periodicals, interviews in newsletters aimed at

> > > disability advocates, conversations from scripts of indie

> movies

> > I

> > > happen to view at 2 or 3 a.m.

> > >

> > > Actually I am interested in learning whether a book (ANOTHER

> > book!)

> > > like this would interest our Feisty members. I am

considering

> > adding

> > > my own BRIEF commentary to each quotation and making the

book

> a

> > > quote-a-day resource -- something to keep on your bedside

> table

> > or a

> > > corner of your computer desk year round and browse through

for

> > some

> > > quick uplift, or to check for " today's special message. "

> > >

> > > " You are not screwed up. You are having an unscrewed-up

> reaction

> > to

> > > a screwed-up situation. " -- Christian Slater as Harry,

a.k.a.

> > Mark,

> > > a Paradise Hills, AZ, deejay and high school student in

*Pump

> Up

> > the

> > > Volume.*

> > >

> > > " If I keep a green bough in my heart, the singing bird will

> > come. "

> > > -- Chinese proverb

> > >

> > > Thanks again for the feedback, Sharon.

> > >

February 28, 2005

Lori,

Well, I am not a Virgo, but that " botched surgery " caption struck me

too. It was one of several obvious inaccuracies in the article. I

always meant to write a letter to the editor, praising the overall

effort and pointing out the misapprehension (botched technique vs.

damaging hardware). But I just have not gotten to that yet, partly

because I tend to stockpile these things -- this weekend I get to

add Time Magazine's Pain cover story to my letters-to-the-editor

pile!

I do save important correspondence but did not back up everything

prior to my last two system crashes . . . and am sorry to say I am

drawing a blank re what I actually wrote to the Oprah producer.

I think I will refrain from comment on Dr. Phil. I know he is a very

popular fellow. At least he is not a Scientologist.

Let's keep brainstorming some of these ideas. I think the group

input is invaluable.

P.S. I, too, am always interested in the yoga-for-scoliosis video

when it is referenced, but I believe -- someone can surely correct

me if I'm mistaken here -- that it is not aimed at people who have

undergone scoliosis surgery. I've felt the same disappointment with

respect to an otherwise excellent book, Back Care Basics -- the

author does give scoliosis unprecedented attention, hurray! and also

discusses self-care after back surgery (e.g., for disk problems) --

but as I recall, includes nothing about SCOLIOSIS surgery per se.

Best,

> >

> > Loriann,

> >

> > Thanks so much for your thoughtful insights. Your analysis of

the

> > main decision (wide appeal vs. niche market) is " right on the

> > money, " double-entendre not wholly intended.

> >

> > I share your feeling about the value of groups like this one.

The

> > medical facts we exchange are often very important in terms of

> > knowledge-sharing, but the less technical content -- the ongoing

> > help in " keeping going " that we somehow manage to extend to one

> > another -- is indescribably uplifting and sustaining in a way

that

> > might have more universal appeal.

> >

> > You also raise the point, though, that it is not just THIS

group --

> > I have to assume that all kinds of other online forums are

equally

> > helpful to their members in the same general way. Once you start

> > contemplating some kind of book that would abstract from more

than

> > one group, however, yikes! That would be a massive project even

for

> > some scholar of " the phenomenon of Internet support groups. " We

may

> > need to think some more about how to widen AND narrow the focus

of

> > our hypothetical book. (Hmm, maybe we should make it

an " expandable

> > e-book, " somehow linking it to its own reader-forum for comments

> and

> > other posts?)

> >

> > As for getting on " Oprah " -- oy, tell me about it! I know I am

not

> > the only participant in this group who has given it my best

shot,

> > emailing the producers once if not twice . . . I think the

photos

> > you envision might help a great deal to " sell " the concept, if

we

> > had 'em.

> >

> > The best sign I've seen so far is that article about the woman

with

> > flatback, from a recent issue of a yoga magazine, which both

> > and I have referenced in this group. I thought it was a real

> > watershed, getting a whole article on the travails of a HARMS

> > sufferer and survivor into a national, glossy-type magazine.

> >

> > I would love to see a powerful and effective media campaign to

> > inform more people about flatback syndrome and revision surgery,

> not

> > to mention the lives of those who traverse this strange new

world

> > beyond childhood scoliosis surgery with Harrington

instrumentation.

> > (Not that we are all identical by any means -- I, for one, got

my

> > lovely lumbar Harrington instrumentation as an adult.)

> >

> > Unfortunately the Internet scoliosis community is not

> > entirely " together, " or maybe I am just not too swift when it

comes

> > to making the right connections. I have tried several times to

> > connect with the NSF, for instance -- I love their newsletter,

but

> > my own offers to write for it do not seem to get any reply,

despite

> > my fairly decent CV (former medical news writer for JAMA,

managing

> > editor of Medical World News, numerous free-lance credits,etc.)

> > (Sometimes I wonder if it's my law degree that puts people off!

But

> > I have also served on the editorial board of the Journal of

Health

> &

> > Hospital Law, and my legal publishing credits are in pretty

> > reputable " establishment " journals, primarily of the forensic-

> psych.

> > ilk.) So I basically just try to make sure I give other NSF

> > stalwarts all the " good press " they deserve from my own little

> > corner of the scoli world here at " Feisty, " and I believe they

> > likewise send an occasional flatbacker our way for further

> > information and support.

> >

> > If anyone gets on Oprah (besides you and me, of course!), I

would

> > hope it might be a representative group of us from the whole

broad

> > spectrum of flatback patients, outstanding and articulate

revision

> > surgeons, scoliosis organizations and Internet sites concerned

with

> > this problem, et al.

> >

> > As you can see, I have more questions than conclusions re any of

> > this. Again, I VERY much appreciate your own excellent " input. "

I

> > hope we can keep the dialogue going.

> >

> > Best,

> >

February 28, 2005

Many thanks, Sharon. This illustrates to me how valuable it can be

to " bounce " one's ideas off other minds. So far it's only two votes

for the title, but your respective two have made me reconsider. I

was actually thinking " Well, this is a quickie title and will not

doubt strike everyone as pretty silly. " Maybe not!

Normally we all drag way too much previous correspondence behind

each of our posts instead of deleting judiciously. But this time,

did you edit a little TOO conscientiously? I can not find the

referent for your " just a thought. A daunting one. " Intriguing . . .

Best,

> Deb, you took the words right out of my mouth. Very cool title,

.

>

> It was just a thought. A daunting one. I certainly wouldn't have

the energy to try it.

>

> Sharon

> Re: On living in pain: Some thoughts

for the dark night of the soul

>

> BTW - Love the title

> you proposed *But the Surgeon Said I Was Cured . . . 300 Women

Share

> the Real Facts of Life After Scoliosis Surgery* I would buy

several

> copies with that title!

>

> Deb M.

> 1989 Harrington Rod with fusion T3-L4

>

February 28, 2005

Wow, Ann, this letter was like manna from heaven. Thank you so very

much.

Would you consider designing a website for me, apart from ?

(You understand that I am but a mendicant monk on the path of

pilgrimage to the temple of spinal analgesia and could pay you only

in autographed copies of my forthcoming obscure and esoteric

bestselling Buddhist-rap compendium? :-) But seriously, this is the

one thing I currently lack which every writer is " supposed " to have,

a central informational online site from which to communicate with

my readers, promote my publications, etc.

You may want to correspond with me about this by private email, in

which case feel free.

Clearly you are a professional, judging from NSF layouts I have seen

over the years. I have had to know some production and graphics in

the course of my career, but, as rather lopsidedly " verbal " vs.

visual, iconic, whatever, I have tended to rely on the art

department to follow their own muse whenever possible. (At one

medical publication -- and this was pre-electronic era, when we

still sent galleys back to a physical printing plant, good grief --

I was pretty good at coming up with the heads which fit the right

pica count and which sometimes had a few people complimenting me or

embarking on pure hysterics. Not that I ever figured out why -- my

sole claim to " fame, " in my opinion, was an intense penchant for

extreme corniness, ostentatiously melded with a staggering quantity

of second-rate " light verse " plus an optional dollop of shameful

puns.

Best,

In , Ann <ae_mcd2003@y...>

wrote:

>

> ,

>

> Reading Loriann's post and your response to her about your book

idea, support groups and Oprah, I began to think. Maybe an hour of

discussing flatback is not appealing to the Oprah producers, but

isn't the dynamics of the on-line support group – women (well

predominantly) coming together to support each other, building

friendships, planning symposiums and books and help for others, etc.

right up the " Oprah alley " ? I think it would appeal to a broader

audience and would have a lighter more positive tone, while still

bringing attention to what flatback is all about.

>

> , I truly believe you could write about cardboard and it

would be interesting. You have such ability. So I have no hesitation

in saying that I would certainly prefer a book that included your

personal commentaries on selected quotations more than just a book

of quotes. I also feel that your commentary and sharing of personal

experiences would help readers understand more academic writing or

some of the Eastern Philosophy which I know you get a lot from. I

think it would be very valuable. I still am hoping you write that

screenplay too!!

>

> So glad that your plans for the pain pump are moving along quicker

and that you feel your energy (mental and physical) is returning.

>

> I have a lot of graphic design, illustration and type experience,

so if you can use help with that, let me know. BTW since this also

came up, many years ago (1989-1990 pre-Internet explosion), I took

all the typewriter handouts at the NSF and desktop published them in

a more consistent format. I also did their newsletter for them for a

while.

>

> Best to all,

>

> Ann

>

> __________________________________________________

>

February 28, 2005

Hi again ,

A few more thoughts came to mind about bringing media attention to

our situations. It occurred to me that this whole deal just isn't

that easy to explain quickly. I've had a doctor practically bite my

head off when I speak ill about my Harrington Rods. It's not the

rods that caused the problems, they say. I think they'd find fault

with my words even if I qualified them to specify Harrington Rods

extending into the lumbar spine. We'd have to explain that it's the

way the fusion was done without retaining the lumbar lordosis. And

then we'd have to explain how the spinal imbalance puts extra stress

on the spine and body below the instrumentation. I'm starting to

doubt if even Oprah could pull off giving all that info.

I wasn't mentioning Dr. Phil as a possiblity for publicity on

flatback. I mentioned him in connection with my personal interest in

the phenomenon of the internet support group. He seems to readily

acknowledge that the internet is having a huge impact on people's

lives.

There are some things I like about him. However I didn't care for

some things about the way he handled that family in crisis where the

woman had cheated on her husband. I ddn't see the entire series,

though, just bits and pieces.

I've got to get my hand on a Time Magazine. Beth, if you're reading

this, what did you think? , would love to hear more of what

you think, too.

One last thing - I liked your title of your book, but is it

forgetting about the guys in our group?

loriann

>

> Lori,

>

> Well, I am not a Virgo, but that " botched surgery " caption struck

me

> too. It was one of several obvious inaccuracies in the article. I

> always meant to write a letter to the editor, praising the overall

> effort and pointing out the misapprehension (botched technique vs.

> damaging hardware). But I just have not gotten to that yet, partly

> because I tend to stockpile these things -- this weekend I get to

> add Time Magazine's Pain cover story to my letters-to-the-editor

> pile!

>

> I do save important correspondence but did not back up everything

> prior to my last two system crashes . . . and am sorry to say I am

> drawing a blank re what I actually wrote to the Oprah producer.

>

> I think I will refrain from comment on Dr. Phil. I know he is a

very

> popular fellow. At least he is not a Scientologist.

>

> Let's keep brainstorming some of these ideas. I think the group

> input is invaluable.

>

> P.S. I, too, am always interested in the yoga-for-scoliosis video

> when it is referenced, but I believe -- someone can surely correct

> me if I'm mistaken here -- that it is not aimed at people who have

> undergone scoliosis surgery. I've felt the same disappointment with

> respect to an otherwise excellent book, Back Care Basics -- the

> author does give scoliosis unprecedented attention, hurray! and

also

> discusses self-care after back surgery (e.g., for disk problems) --

> but as I recall, includes nothing about SCOLIOSIS surgery per se.

>

> Best,

>

February 28, 2005

Um, I meant the idea of writing a book with your wonderfully wacky title.

Re: On living in pain: Some thoughts

for the dark night of the soul

>

> BTW - Love the title

> you proposed *But the Surgeon Said I Was Cured . . . 300 Women

Share

> the Real Facts of Life After Scoliosis Surgery* I would buy

several

> copies with that title!

>

> Deb M.

> 1989 Harrington Rod with fusion T3-L4

>

February 28, 2005

I'm really sorry to hear about your experience of having your head

bitten off and being told that " It's not the rod that caused the

problems. " I've heard the same big fib myself, although fortunately

not since I fled my original Harrington rod surgeon, circa 1997. As

I've written here before, no one subsequent to that guy even tried

to sell me on that particular fairy tale. He wasn't worried about

giving impetus to some new myth of " botched surgery, " I guess, since

he had a convenient explanation all ready -- it was my bad disks! Uh-

huh. (I was reminded of the O.B. who got all testy when I inquired

about the temporary forceps marks on my newborn son's precious face.

He yelped at me, " Your body did that to him! " )

Yes, I did leave the guys out, and I apologize. Severe scoliosis

requiring treatment is so overwhelmingly a female malady that the

guys must feel sort of peripheral at times, even without my adding

to such marginalization. Mea culpa, gentlemen.

> >

> > Lori,

> >

> > Well, I am not a Virgo, but that " botched surgery " caption

struck

> me

> > too. It was one of several obvious inaccuracies in the article.

I

> > always meant to write a letter to the editor, praising the

overall

> > effort and pointing out the misapprehension (botched technique

vs.

> > damaging hardware). But I just have not gotten to that yet,

partly

> > because I tend to stockpile these things -- this weekend I get

to

> > add Time Magazine's Pain cover story to my letters-to-the-editor

> > pile!

> >

> > I do save important correspondence but did not back up

everything

> > prior to my last two system crashes . . . and am sorry to say I

am

> > drawing a blank re what I actually wrote to the Oprah producer.

> >

> > I think I will refrain from comment on Dr. Phil. I know he is a

> very

> > popular fellow. At least he is not a Scientologist.

> >

> > Let's keep brainstorming some of these ideas. I think the group

> > input is invaluable.

> >

> > P.S. I, too, am always interested in the yoga-for-scoliosis

video

> > when it is referenced, but I believe -- someone can surely

correct

> > me if I'm mistaken here -- that it is not aimed at people who

have

> > undergone scoliosis surgery. I've felt the same disappointment

with

> > respect to an otherwise excellent book, Back Care Basics -- the

> > author does give scoliosis unprecedented attention, hurray! and

> also

> > discusses self-care after back surgery (e.g., for disk

problems) --

> > but as I recall, includes nothing about SCOLIOSIS surgery per

se.

> >

> > Best,

> >

March 3, 2005

,

I can easily write some html pages for you with mail links. I can't do anything

more interactive than that at the moment. The first step would be for you to

send me links to similar pages that you think are good.

I am old enough to remember specing type the old-fashioned way. I actually blame

those days of leaning over a drawing table for eight hours as the reason I

developed flatback so quickly. I can remember I would go to stand up and I

couldn't. I would have to lay on the floor for a while after work to get enough

strength to take the train home. It was awful. Soon after that, I learned

desktop publishing because I could do my graphic work while reclining. That led

to a technical career so maybe it was a blessing of sorts.

Ann

Rasche <poetryperson@...> wrote: