Re: Embarrasing for ME and You

[Guest guest]

I have been pondering this statement:

" Nobody would deny that multiple sclerosis can be an extremely

unpleasant and disabling illness to live with. But so can ME/chronic

fatigue syndrome. "

It's so sad, that suffering becomes a contest, with the victims of

one plague saying " we are every bit as miserable as the victims of

that other plague, over there. "

Are such grotesque comparisons necessary? Do they arise as

inevitable expressions of our collective insufficiency, our

inability as human beings to cope with suffering in all its forms?

Or is there something more specific at work, a world view that

reduces suffering to a problem to be solved, by the focused

application of scarce resources? So that suffering, while it may

gain a remedy here and there, loses all of its dignity?

I don't know. I know that the better part of my character turns away

in shame, when desperately ill people treat the long search for

healing as a horserace.

The patient with ME is prone to saying " You can't imagine, from

looking at me, or what you read about my disease in the media, the

suffering I am subject to. " This is very likely the truth, about ME,

and MS, and Lyme disease, and a host of other poorly understood

illnesses that do not manifest with obvious physical signs.

Needless to say, one consequence of that truth is that I cannot say,

about someone who suffers from one of these diseases, 'my suffering

is the equal of yours.' How on earth would I know that?'

The relativity of hardship, to some abstracted third party who is

making comparisons, does nothing to change the absolute nature of

that same same hardship, for the person who suffers it.

Suffering does not abide in the space between us, where a person

must stand to make such comparisons, but in the space within us,

which wisdom teaches us to regard as holy ground.

Modern medicine, couched in a world view that sees life as

competition for scarce resources, has little understanding of these

things. We want to know why this institution treats us so badly, to

see ourselves through its eyes. Perhaps this is how we go astray.

Because if we allow ourselves to view life through that lens our

vision is badly degraded.

We want to say to modern medicine, " Be fair, be consistent, apply

the same principle to our suffering that you do to everyone else's. "

We are not going to transform this falllen institution into an

embodiment of compassion. At best, we might succeed in confronting

it with its own contradictions, but even that is tricky.

We never know which way an institution so divided will turn, to

resolve internal conflicts. Modern medicine might very well

say, " Yes, you are just as bad off as those people with MS, and the

truth is we can do nothing much for any of you, except divert

research and treatment dollars from people who are far more likely

to benefit from them. "

In a darker mood, modern medicine might reply, " Yes, you are all

miserable, because you are all so poorly equipped genetically to

cope with the requirements of life today that the kindest thing

would be to euthanize the lot of you, protecting the gene pool from

any further repitition of your woes. "

At a minimum, we need to be very specific about WHICH principle it

is, that we would like to see applied fairly and consistently to all

cases. Would it be " first, do no harm? " I think not, because that

principle has become like an umbrella of neglect, which keeps the

rain from falling on the just and the unjust, the truly miserable

and the merely derelict, alike.

Or is our purpose to introduce a new principle? Perhaps we want to

say " Life is more than respiration. We may still be breathing, but

we have surely lost our lives. " Why then do we matter? If our lives

with this illness are not really LIFE, can they not be disposed of

lightly?

We patients, too, have our contradictions, which must be confronted.

We start out aware that modern medicine takes a degraded and

degrading view of our suffering. That is an accurate perception, one

that speaks volumes about the nature of the institution.

But then, since we are still hoping that institution will deliver

us, we switch gears, speaking as if it were not wrong in its outlook

but only mistaken in its particulars. 'Ah, you see, you have

confused us with some other undeserving group, and failed to see how

closely we resemble those you favor with your gifts.'

Some part of us that knows enough to stay in the shadows

thinks " well, after all, not everyone can be cured, someone's

suffering is bound to be discounted, but I'll be damned if it's

going to be mine. "

We're all damned, when we think like that.

Not so long ago it was fashionable for people with CFS to cite a

study comparing their 'misery index' to that of someone in the late

stages of AIDS. Then a study was released, indicating that some 85

million Africans will perish of AIDS over the next decade, unless

something more is done. People of good taste stopped using that

argument.

Human beings are limited creatures. Modern human beings have less

clarity about what limits apply to them than any previous generation

of mankind. Perhaps we can do anything we like, or perhaps we cannot

do anything at all except conform to the pressures that bear in on

us. We seem always in doubt which it is.

One of the limits we do well to remember is this: we can really only

take in one human being at a time. When we try to devise 'systems'

for overcoming this limitation, they are invariably dehumanizing. A

well designed system finds a way to put the individual human being

back at the center of things, to give back with one hand what it has

taken away with another. This is why bureaucracies have both broad

rules, which they apply more or less blindly, without distinction,

and an appeals process that puts the question back in the context of

a single human life.

When appeals are routinely denied, bureaucrats will try to tell

themselves that this is because the rule in question is both

necessary and just. We all know better. Bureaucracy can only be

reconciled to human dignity when citizens - individual human beings

who know they live in each other's debt - give a 'second hearing' to

petitions that have been unjustly denied, and subject

bureaucracy's 'first princples' to 'second thoughts.'

It is to this forum that all ill-favored petitions must ultimately

be addressed. We preserve our dignity by not groveling before

a 'higher authority' but speaking on the level with people who are

after all human beings like ourselves.

Keeping these things in mind may help us to avoid horrors like " my

suffering is worth just as much as his! "

>

> Letter to The Guardian from The ME Association:

>

> Editor

>

> Nobody would deny that multiple sclerosis can be an extremely

> unpleasant and disabling illness to live with. But so can

ME/chronic

> fatigue syndrome.

>

> Having described how the neurological symptoms of the two

illnesses

> can be extremely similar, and thus lead to prolonged diagnostic

> uncertainty, it was unfortunate that Georgina then went on

> to perpetuate some of the disparaging attitudes and myths that

> surround ME.

>

> The World Health Organisation classifies ME as a genuine

> neurological disease - as does the Department of Health. And

several

> research studies which have examined the effects of ME on

> overall quality of life have confirmed that levels of disability

can

> be even more severe than found in people with relapsing/remitting

> multiple sclerosis (reference provided below).

>

> Yours sincerely

>

> Dr Shepherd

>

> Medical Adviser, The ME Association

[Guest guest]

, a truism is, there is no 'minor' surgery when it's being

performed on oneself.

At the conference I mentioned going to this weekend there was a man

in a wheelchair with transverse myelitis. He was in pretty good

spirits for his situation and actively searching for cures all these

years. He said, his definition of, how bad is it, is: If you can walk

and you can pee, it's not that bad. Obviously he can't do either.

I felt for him. And yet, my own suffering is MY OWN and I rage and

cry against it daily and I consider that a sign of my

spiritual/emotional HEALTH ultimately, no matter what anybody else

may think. After getting my IVIG yesterday (only 5 grams) I can

sometimes feel myself into who I am without chronic infection, and

remember that self. I was listening to a Randy song on my Ipod

and walking to the new Wholefoods (huge healthfood supermarket) and

the spring sky was extremely beautiful in the early evening light,

and I wanted my entire old self back. The one that moves in sync with

the moment entirely in my own way and that takes life on my own

terms, the one that catches the attention of men of all ages as I

walk (and yesterday, partly becauseof the beautiful weather probably

which changes everybody's moods, that was happening--I am sure you'll

understand as I've seen your art on that website)...the one that

might choose any flavor of experience that seems appropriate and real

and deep at the moment...to lose this has been immense, and that is

the real loss, not this pain or that pain or exhaustion or malaise or

feeling toxic/poisoned or whatever symptom complex arises and

disappears.

So I don't think that letter was about comparisons. It was about

loss, pure and simple, asking loss to be recognized. Also MS is

studied (tho probably wrongly turfed solely into neurology) and there

are drugs for it and being developed for it. These other diseases are

wastebasket and more ignored.

Doctors can't be responsible for so much loss, especially since

they're pawns between the insurance and pharma industries...

Everybody has their own way of dealing with stuff. Some say, we are

spiritually whole no matter what. I say, every day, I resent and

decry and hate that anything has been taken from me and I fight it

and it's wrong and its unfair and I want life back on my terms.

By the way, YOU SHOULD DO HYPERBARIC!!! WHAT ARE YOU WAITING FOR?

See I am going to bug you because I know it will make a difference.

[Guest guest]

I agree with Jill, - your thoughts are a good read in their own

right but I dont see them applying really to this letter/situation.

MS and many other such diseases just really *are* recognized by

people, whereas idiopathic fatigue/malaise absent clear objective

clinical signs, be it ever so severe, has consistently been attributed

to excessive masturbation, cessation of masturbation (in the 1930s...

but likely later on too), poor charecter, " repression " , whatever. Ive

read the most terrible accounts, which I presume are probably true, of

a little australian girl being institutionalized and forced to

exercise, having her complaints ignored and rejected as a treatment

technique - this in our own time. ME is still mistreated horrednously

in europe especially on a very broad basis - and in the US CFS is

scoffed at on TV comedies, which really ends up detrimenting people in

concrete ways, such as thier access to medicine. So I think the

comparison to MS does have to be made publically for pragmatic reasons.

[Guest guest]

An interesting socio-historical note: I dont know what data this claim

is based on, but I read on some webpage that in the early 20th century

men had a significantly higher MS dx rate than women, because women

were likely to be alternatively dx'd with " hysteria. " Whereas now many

more women are dx'd, as is the case with most of the idiopathic

chronic diseases. I hear men with MS may more readily develop a

primary or secondary progressive course, which could also be a

significant factor in this bit of history.

[Guest guest]

Good morning, Jill,

All sorts of seeds take root in suffering's fertile soil. It is not

where I would have chosen to plant my garden, but here I am. Now and

then I see something trying to grow here that offends me so deeply I

am not satisfied pulling it out, but want to say " keep those seeds

away from my garden, damn it! "

Yes, I know exactly what you mean. Spring is in the air here in

Santa Cruz, too.

You are exactly right when you say " it's MY suffering. " That is how

suffering is. Personal and yet not, an onslaught of impersonal

forces that undermines the experience of personhood.

Each human being's suffering is 'different', but no one's

suffering 'defines' them. Defining us is the one thing that a

disease, or any other impersonal force - cannot do. Why else do we

feel these things as intrusions, when they come to dominate our

lives? They are oblivious to our personhood, and oblivion is more

threatening, even, than death, an almost retroactive cancellation of

the promise that came into the world the day we were born.

Yet we do define our suffering, we give it a definite character, we

present it to others in definite terms.

The question is whether we do that in a way that reflects our

personhood, or the forces that work to thwart it. That's all I was

trying to get at. There are two things in close conflict, and we

need to pay attention to which of them is speaking, when we open our

mouths.

Because suffering is universal, and personhood is always in danger,

it is conceivable that other human beings will comprehend our need

for help. We must be careful not to speak in a way that eclipses

that possibility, not to preface a plea for understanding with 'of

course, there is no way in hell you will ever understand'.

We are the displaced, uprooted by hardship from the ground of

personhood. Yet we are not really displaced, or we would not suffer

so. If the roots were not still alive and partly intact, feeling

them severed (I feel it, I feel it as I type this) would not cause

us so much pain.

That continuing contact with what it means to be a living human

being is quite literally all we have at our disposal, if our goal is

to call other human beings to assist us.

We cannot afford to squander even a penny of it, by invoking a

contest to see whose fate is the unfairest of them all. I would say

even the appearance of that puts us badly over-budget.

There is still something precious, that cries out to be preserved,

in your life and mine. A unique potential, a way of being in the

world that cannot be replicated. We want to save that! We fear that

others can neither comprehend nor value it.

Those feelings get overlayed on the disease. It becomes the disease

whose particular qualities must be noted and valued. Nonsense. The

disease, with all its particulars, is an excellent candidate for

oblivion. Let it vanish, and take its particulars with it!

Of course those particulars matter, to us, because we live with

them. They matter, medically, as manifestations which may help to

unlock the cure. They do not matter in any other way. We do not want

to make a cult around them, excluding everything that doesn't fit

their parameters, maintaining their purity.

How does the person who made that statement know, that MS and ME are

not the same disease? He doesn't. I would rather he not make his

plea on my behalf by taking out a measuring stick, as if we were

talking about two known quantities. I would rather that no one,

ever, advocate for me by making arrogant assumptions.

It's not that your point isn't valid, Jill. Of course it matters

what the speaker's intentions are. But it also matters what he says,

and I don't like what he says. If his purpose is good, his words

fail to do justice to it.

We have been done such injustice by others, it no doubt can sound

trifling or unfair to worry loudly about the injustices we may do to

others, or ourselves. But that is the realm where I have power,

Jill. That is the realm where in spite of everything you and I have

lost we continue to have choices to make.

I don't mean to sound high and mighty, but I do mean to say that I

am not so low and weak that I no longer care what comes out of my

mouth.

PS: I do have just a handful of things other than the hyperbaric

treatment to attend to, but hope that won't deter you from

continuing to remind me. I take time out to write about whatever

catches my imagination, because that is how a sickly scha

remembers that he's alive.

>

> , a truism is, there is no 'minor' surgery when it's being

> performed on oneself.

>

> At the conference I mentioned going to this weekend there was a

man

> in a wheelchair with transverse myelitis. He was in pretty good

> spirits for his situation and actively searching for cures all

these

> years. He said, his definition of, how bad is it, is: If you can

walk

> and you can pee, it's not that bad. Obviously he can't do either.

>

> I felt for him. And yet, my own suffering is MY OWN and I rage and

> cry against it daily and I consider that a sign of my

> spiritual/emotional HEALTH ultimately, no matter what anybody else

> may think. After getting my IVIG yesterday (only 5 grams) I can

> sometimes feel myself into who I am without chronic infection, and

> remember that self. I was listening to a Randy song on my

Ipod

> and walking to the new Wholefoods (huge healthfood supermarket)

and

> the spring sky was extremely beautiful in the early evening light,

> and I wanted my entire old self back. The one that moves in sync

with

> the moment entirely in my own way and that takes life on my own

> terms, the one that catches the attention of men of all ages as I

> walk (and yesterday, partly becauseof the beautiful weather

probably

> which changes everybody's moods, that was happening--I am sure

you'll

> understand as I've seen your art on that website)...the one that

> might choose any flavor of experience that seems appropriate and

real

> and deep at the moment...to lose this has been immense, and that

is

> the real loss, not this pain or that pain or exhaustion or malaise

or

> feeling toxic/poisoned or whatever symptom complex arises and

> disappears.

>

> So I don't think that letter was about comparisons. It was about

> loss, pure and simple, asking loss to be recognized. Also MS is

> studied (tho probably wrongly turfed solely into neurology) and

there

> are drugs for it and being developed for it. These other diseases

are

> wastebasket and more ignored.

>

> Doctors can't be responsible for so much loss, especially since

> they're pawns between the insurance and pharma industries...

>

> Everybody has their own way of dealing with stuff. Some say, we

are

> spiritually whole no matter what. I say, every day, I resent and

> decry and hate that anything has been taken from me and I fight it

> and it's wrong and its unfair and I want life back on my terms.

>

> By the way, YOU SHOULD DO HYPERBARIC!!! WHAT ARE YOU WAITING

FOR?

> See I am going to bug you because I know it will make a difference.

[Guest guest]

, if what you say here is what the author meant, he would have

done better to use your words, than his.

Do you notice how in evoking the horror of how this illness is

treated, you at no point are forced to quantify any other form of

suffering?

No one knows how, exactly, but when we know what we mean, we usually

manage to say it. I put it to you that too often we do not know what

we mean.

>

> I agree with Jill, - your thoughts are a good read in their

own

> right but I dont see them applying really to this letter/situation.

>

> MS and many other such diseases just really *are* recognized by

> people, whereas idiopathic fatigue/malaise absent clear objective

> clinical signs, be it ever so severe, has consistently been

attributed

> to excessive masturbation, cessation of masturbation (in the

1930s...

> but likely later on too), poor charecter, " repression " , whatever.

Ive

> read the most terrible accounts, which I presume are probably

true, of

> a little australian girl being institutionalized and forced to

> exercise, having her complaints ignored and rejected as a treatment

> technique - this in our own time. ME is still mistreated

horrednously

> in europe especially on a very broad basis - and in the US CFS is

> scoffed at on TV comedies, which really ends up detrimenting

people in

> concrete ways, such as thier access to medicine. So I think the

> comparison to MS does have to be made publically for pragmatic

reasons.

[Guest guest]

Oh gosh ...

Each of us deals with our situation in our own way.

I don't have too much energy to philosophize beyond understanding

that the universe is creative, therefore allows room for random

mutation, error, thus personal suffering of all kinds, and has no

empathy for us. A spectacle, sublime, sometimes terrible, etc, as

ph Conrad says (I paraphrase).

I don't WANT MY OWN SUFFERING and so I fight against it. Others have

different ways. I stay mad, and also cry. I have no desire to accept

it. It has taken a lot from me. I refuse to say it has given me a

lot, too. No, I just do the best I can. The problem for me, is there

are certain things I never cared too much about. I didn't need a big

home, fancy car, lots of possessions, I'm happy with what I have, but

I needed always the freedom to take the universe in on my own terms

and shape it and create something out of that experience. And lyme

has tried to take that from me every moment. I've won against it so

far. I should mention yesterday that with the gamma freshly in me, I

could feel " it " lurking underneath. I don't know what " it " is and

could variously call it bad genes, infection with lyme or something

else (maybe its just lyme), or sorcery of some karmic kind.

Whatever " it " is, it was " mad " that it was temporarily squelched by

the cottony plushness of gamma globulin. It does NOT want me to win.

I am determined to win.

Everybody does it their own way. I find no meaning in my suffering.

It is a friggin' bore. Boring is the worst.

YOu see I have posted you about the chambers. The other things you

are attending to would not be as helpful to you, imho...(humble

opinion)

[Guest guest]

When I read your remarks, Jill, I really related. I

am so mad that I cannot grow the way I want to

because of this disease. I WANT to be grateful for the

things that this disease has taught me but at the

moment I am mostly mad because my efforts at growth

are stifled by this exhaustion. It is hard for me to

be balanced because the giving in to my creativity

requires that I use energy from my already depleted

reserves even though the creativity itself comes from

an unlimited source. Or maybe there is something that

I am just not getting yet. Maybe it is that giving in

and giving up are erroneously the same in my mind?

OK, now I don't even understand what I just said. I

guess my words just mean that I am struggling with the

meaning of all this and I am too exhausted to even put

it into words. I want to accomplish something with my

life and grow spiritually but at the moment I have to

give up and rest. God that is hard. It makes me so

mad.

Marie

--- jill1313 <jenbooks13@...> wrote:

>

> Oh gosh ...

> Each of us deals with our situation in our own way.

> I don't have too much energy to philosophize beyond

> understanding

> that the universe is creative, therefore allows room

> for random

> mutation, error, thus personal suffering of all

> kinds, and has no

> empathy for us. A spectacle, sublime, sometimes

> terrible, etc, as

> ph Conrad says (I paraphrase).

>

> I don't WANT MY OWN SUFFERING and so I fight against

> it. Others have

> different ways. I stay mad, and also cry. I have no

> desire to accept

> it. It has taken a lot from me. I refuse to say it

> has given me a

> lot, too. No, I just do the best I can. The problem

> for me, is there

> are certain things I never cared too much about. I

> didn't need a big

> home, fancy car, lots of possessions, I'm happy with

> what I have, but

> I needed always the freedom to take the universe in

> on my own terms

> and shape it and create something out of that

> experience. And lyme

> has tried to take that from me every moment. I've

> won against it so

> far. I should mention yesterday that with the gamma

> freshly in me, I

> could feel " it " lurking underneath. I don't know

> what " it " is and

> could variously call it bad genes, infection with

> lyme or something

> else (maybe its just lyme), or sorcery of some

> karmic kind.

> Whatever " it " is, it was " mad " that it was

> temporarily squelched by

> the cottony plushness of gamma globulin. It does NOT

> want me to win.

> I am determined to win.

>

> Everybody does it their own way. I find no meaning

> in my suffering.

> It is a friggin' bore. Boring is the worst.

>

> YOu see I have posted you about the chambers. The

> other things you

> are attending to would not be as helpful to you,

> imho...(humble

> opinion)

>

>

>

>

__________________________________________________

[Guest guest]

Giving in, in the sense of luxuriating in a hot bath or in the peace

of your bed/sanctuary of home...or enjoying a beautiful spring day

and quietly appreciating the tree blossoms (all of which I've done

recently!) is okay. But giving in, in the sense of, not looking as

hard as ever for answers, that is not allowed .

One of the qi gong masters at the conference said think of it as your

associate or your friend if you can, telling you this or that, lesson

to learn etc etc.

I know she means well but though I entertained the idea that day, I

don't want to. Now, she also pointed out there is a way to be

positive, and it will strengthen my immune system. " I could use 95%

more energy today " is positive, " I feel lousy " is not. I agree with

her and mean to try harder in that regard.

However, think of it as your enemy, that is my counsel! It wants to

stop your creativity. It is virulent, vituperative, and wants to blot

out the light. You must never let it take your creativity away.

That's why I loved what Wells wrote on her website (she wrote

the divine secrets of the ya ya sisterhood). She waited for her

packets of energy. They were small. And they came, and she wrote.

Creativity is on your side. It is stronger than the darkness. But you

have to fight with everything inside you.

> >

> > Oh gosh ...

> > Each of us deals with our situation in our own way.

> > I don't have too much energy to philosophize beyond

> > understanding

> > that the universe is creative, therefore allows room

> > for random

> > mutation, error, thus personal suffering of all

> > kinds, and has no

> > empathy for us. A spectacle, sublime, sometimes

> > terrible, etc, as

> > ph Conrad says (I paraphrase).

> >

> > I don't WANT MY OWN SUFFERING and so I fight against

> > it. Others have

> > different ways. I stay mad, and also cry. I have no

> > desire to accept

> > it. It has taken a lot from me. I refuse to say it

> > has given me a

> > lot, too. No, I just do the best I can. The problem

> > for me, is there

> > are certain things I never cared too much about. I

> > didn't need a big

> > home, fancy car, lots of possessions, I'm happy with

> > what I have, but

> > I needed always the freedom to take the universe in

> > on my own terms

> > and shape it and create something out of that

> > experience. And lyme

> > has tried to take that from me every moment. I've

> > won against it so

> > far. I should mention yesterday that with the gamma

> > freshly in me, I

> > could feel " it " lurking underneath. I don't know

> > what " it " is and

> > could variously call it bad genes, infection with

> > lyme or something

> > else (maybe its just lyme), or sorcery of some

> > karmic kind.

> > Whatever " it " is, it was " mad " that it was

> > temporarily squelched by

> > the cottony plushness of gamma globulin. It does NOT

> > want me to win.

> > I am determined to win.

> >

> > Everybody does it their own way. I find no meaning

> > in my suffering.

> > It is a friggin' bore. Boring is the worst.

> >

> > YOu see I have posted you about the chambers. The

> > other things you

> > are attending to would not be as helpful to you,

> > imho...(humble

> > opinion)

> >

> >

> >

> >

>

> __________________________________________________

>

[Guest guest]

Jill,

Thank You-your counsel is priceless at the moment. The

words have a lot of relevance to where I am at right

now. I am going to print this off.

I struggle with keeping positive and this will help me

remember to try harder.

Marie

--- jill1313 <jenbooks13@...> wrote:

>

> Giving in, in the sense of luxuriating in a hot bath

> or in the peace

> of your bed/sanctuary of home...or enjoying a

> beautiful spring day

> and quietly appreciating the tree blossoms (all of

> which I've done

> recently!) is okay. But giving in, in the sense of,

> not looking as

> hard as ever for answers, that is not allowed .

>

> One of the qi gong masters at the conference said

> think of it as your

> associate or your friend if you can, telling you

> this or that, lesson

> to learn etc etc.

>

> I know she means well but though I entertained the

> idea that day, I

> don't want to. Now, she also pointed out there is a

> way to be

> positive, and it will strengthen my immune system.

> " I could use 95%

> more energy today " is positive, " I feel lousy " is

> not. I agree with

> her and mean to try harder in that regard.

>

> However, think of it as your enemy, that is my

> counsel! It wants to

> stop your creativity. It is virulent, vituperative,

> and wants to blot

> out the light. You must never let it take your

> creativity away.

> That's why I loved what Wells wrote on her

> website (she wrote

> the divine secrets of the ya ya sisterhood). She

> waited for her

> packets of energy. They were small. And they came,

> and she wrote.

>

> Creativity is on your side. It is stronger than the

> darkness. But you

> have to fight with everything inside you.

>

>

> > >

> > > Oh gosh ...

> > > Each of us deals with our situation in our own

> way.

> > > I don't have too much energy to philosophize

> beyond

> > > understanding

> > > that the universe is creative, therefore allows

> room

> > > for random

> > > mutation, error, thus personal suffering of all

> > > kinds, and has no

> > > empathy for us. A spectacle, sublime, sometimes

> > > terrible, etc, as

> > > ph Conrad says (I paraphrase).

> > >

> > > I don't WANT MY OWN SUFFERING and so I fight

> against

> > > it. Others have

> > > different ways. I stay mad, and also cry. I have

> no

> > > desire to accept

> > > it. It has taken a lot from me. I refuse to say

> it

> > > has given me a

> > > lot, too. No, I just do the best I can. The

> problem

> > > for me, is there

> > > are certain things I never cared too much about.

> I

> > > didn't need a big

> > > home, fancy car, lots of possessions, I'm happy

> with

> > > what I have, but

> > > I needed always the freedom to take the universe

> in

> > > on my own terms

> > > and shape it and create something out of that

> > > experience. And lyme

> > > has tried to take that from me every moment.

> I've

> > > won against it so

> > > far. I should mention yesterday that with the

> gamma

> > > freshly in me, I

> > > could feel " it " lurking underneath. I don't know

> > > what " it " is and

> > > could variously call it bad genes, infection

> with

> > > lyme or something

> > > else (maybe its just lyme), or sorcery of some

> > > karmic kind.

> > > Whatever " it " is, it was " mad " that it was

> > > temporarily squelched by

> > > the cottony plushness of gamma globulin. It does

> NOT

> > > want me to win.

> > > I am determined to win.

> > >

> > > Everybody does it their own way. I find no

> meaning

> > > in my suffering.

> > > It is a friggin' bore. Boring is the worst.

> > >

> > > YOu see I have posted you about the chambers.

> The

> > > other things you

> > > are attending to would not be as helpful to you,

> > > imho...(humble

> > > opinion)

> > >

> > >

> > >

> > >

> >

> > __________________________________________________

> >