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Date: 9/20/94
To: All staff
From: BG
Re: Email responses to Visiting Hours Press Release
----------------------------------------------------------------------------------------------
On September 15, I posted the Visiting Hours press release to a cystic fibrosis
discussion group on the Internet. Here are some excerpts from the discussion
it sparked:
Date: Thu, 15 Sep 1994 12:53:52 EDT
From: CherylV93@AOL.COM
To: Multiple recipients of list CYSTIC-L
Subject: NYC exhibit
Well now, isn't this a thrill with which to start a day - "linkage between
CF
and masochism announced at NY premier: !!!
My reaction to this is so strong, and so negative, that I'm finding myself at
a loss to find adequate words. What about the rest of you? How about you - Brian
Goldfarb? Are you letting us know about this in the tone of "I think you
all had better know this is happening" or is it more along the line of
"look at the accomplishments of this person who has CF"?
Cheryl Reynolds
Date: Thu, 15 Sep 1994 16:28:06
EDT
From: DRMRS HAROLD A SOLOFF <TMGC27A@PRODIGY.COM>
To: Multiple recipients of list CYSTIC-L
Subject: CF and the Arts
Cheryl, et al.: Nothing like a bit of "culture" to stimulate the intellectual
side of those involved with CF.Perhaps, it's just a reminder, that those who
share a disease, don't necessarily have similar taste in the arts, politics,
religion, or peanut butter!I find the thought of a CF exhibition interesting,
and to know, that an accomplished author/poet with CF is making himself available
to the public seems positive to me.Frankly, I wouldn't get too excited talking
to a guy in his jammies.My frat house days are long gone.If I'm not mistaken,
chapter 52 of the text in psychology 315 covers people who punch holes in themselves...a
means of getting back at your body, when it is making life miserable, to paraphrase.As
for sex and pain, the Bobbitt (sic?) case, the ultimate, covers that one!Even
without contemplation, I prefer peanut butter to masochism, although, I must
admit, I haven't tried the latter.At 14, I was told I was allergic to peanut
butter, but have kept eating it...maybe I'm masochistic, afterall. Hal
Date: Thu, 15 Sep 1994 15:04:11 -0600
From: Penni Duncan <penni@CSN.ORG>
To: Multiple recipients of list CYSTIC-L
Subject: Re: NYC exhibit
What is this all about? I don't get it.
On Thu, 15 Sep 1994 CherylV93@aol.com wrote:
> Well now, isn't this a thrill with which to start a day - "linkage
between CF and masochism announced at NY premier: !!!
> My reaction to this is so strong, and so negative, that I'm finding
> myself at a loss to find adequate words. What about the rest of you?
> How about you - Brian Goldfarb? Are you letting us know about
> this in the tone of "I think you all had better know this is happening"
> or is it more along the line of "look at the accomplishments of this
> person who has CF"?
>
> Cheryl Reynolds
Date: Thu, 15 Sep 1994 19:14:04
-0400
From: "D.Schubert" <crawford@CLARK.NET>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Sex
Okay, all of this s/m stuff aside...
I've found that sex is a very effective way of clearing the lungs. However,
I'm also aware of how much of a turn on hacking up a plug or two of mucus can
be for my partner...
bye,
crawford@clark.net
****************************
*There is power in a union!*
****************************
Health care is a basic human right
Date: Fri, 16 Sep 1994 09:28:36
-0400
From: Antony Dugdale <antdugl@MINERVA.CIS.YALE.EDU>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: NYC Exhibit
I find it interesting that Cheryl was so profoundly turned off by the mention
of the "exhibit" at the Museum of Cntmp Art. What is it that turns
you off so much, assuming that it was more offensive than just hearing about
the events at the latest Lollapalooza festival or the more extreme elements
in this summer's Stonewall 25 celebration in NYC? What is it about the linkage
with CF that is so disturbing? It makes every bit of sense to me, cos I think
we've all seen, even on this very list, that CF can drive all of us, parents
but CF'ers even more so, over the brink and into some never-never lands that
Joe- American probably never manages to explore ...
When I saw that message I immediately saved it and am looking forward to going
down there, perhaps with some friends. I think it's great that CF is being presented
to "the public" not as some childhood oh-so-terrible disease that
leaves us crippled and crying out for the public's pity. I think it's great
that our notions of how to combat disease (doctors, hospitals, medicines, and
if you die you've lost the game) are being challenged, and that someone is plumbing
the psychological depths that this crazy mutation forces us into. I think it's
great that sexual perversity and the institutional perversity of hospitals are
being shown side-by-side. I think it's great that those of us who have graduated
from having "care-takers" and are now taking care of ourselves will
have a public place to explore, if not our own, at least the intricacies of
someone else's Angst!
I guess what I'm trying to say is ... there's MUCH more to having CF than nebs
and enzymes and IVs and O2. That "much more" doesn't get explored
much when the only people who have CF are children, who still have a lot to
learn about expressing things in a language that the public at large can understand
(though children are certainly profoundly capable of expressing a depth of emotional
suffering and joy to parents who are really listening). But now there are a
lot of folk out there who have CF and are living "normal" adult lives,
with all the pain and anxiety and "maturity" that adult life brings
with it. We're all going to deal with that in different ways, but we're all
going to deal with it. I for one am glad to see that this is making its way
into the adult world of artistic expression, and while I don't foresee myself
going out and piercing my nipple after going to the museum, I do have little
doubt that I'll recognize bits of my own soul flitting around over there ...
peace and health, -ad
Antony Dugdale (antdugl@minerva.cis.yale.edu) o /
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- < |
snail mail: 48 Hubinger St, New Haven, CT 06511 / >
Date: Fri, 16 Sep 1994 09:40:28 -0400
From: Antony Dugdale <antdugl@MINERVA.CIS.YALE.EDU>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Re: Sex
On Thu, 15 Sep 1994, D.Schubert wrote:
> Okay, all of this s/m stuff aside...
>
> I've found that sex is a very effective way of clearing the lungs.
> However, I'm also aware of how much of a turn on hacking up a plug or
> two of mucus can be for my partner...
Y'all might find this hard to believe, but my beau has found that, after enough
conditioning (!), she has found my cough to be a solid, objective indication
that it was as good for me as it was for her. She just patsmy head and calls
me her lil' coffer ...
Now who said this was a family channel?! ;-)
peace, -ad
Antony Dugdale (antdugl@minerva.cis.yale.edu) o /
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- < |
snail mail: 48 Hubinger St, New Haven, CT 06511 / >
Date: Fri, 16 Sep 1994 11:22:08 EDT
From: CherylV93@AOL.COM
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L Subject: NYC exhibit
Thank you, Hal and Antony, for your responses to my dismay over the NY museum
exhibit. Hal (with your so-welcome humor) and Antony (with your wonderful ability
to express your feelings) have helped me look at this from different angles.
Now if you two could just have exhibits side-by-side with Bob, we might get
some balance in this matter . . . . .!
Since I'm feeling a bit embarrassed, let me explain where I was coming from
when I read that announcement yesterday. The whole issue of sex and AIDS popped
into my mind, along with reminders of the tremendous struggle on the part of
many people that's been required in an effort to separate the disease from an
automatic association with homosexuality.
It didn't take much for my active imagination so envision this scenario:
Fundraising person is speaking ernestly to a group of high-powered company execs
about CF and the need for research monies. Mr. CEO scratches his head, thinks
a moment, then exclaims: "This cystic fibrosis you're talking about - a
friend told me about an exhibit he went to - it's linked to some weird sex,
isn't it? Well (heh, heh) of course that's okay with me, but surely you realize
our company's name couldn't be linked with something like that . . ."
Ah well, my imagination runs away with me sometimes, I guess. I just hate to
see sexual nomenclature of any kind linked to a disease, because public bias
and fear is so easily generated, and so very difficult to erase.
Thanks again, guys - and love and good health to all of you!
Cheryl Reynolds
Date: Fri, 16 Sep 1994 12:40:32 -0400
From: John Benninger
<John=Benninger%Nursing2%SMC@SMC.SUNNYBROOK.UTORONTO.CA >
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Sex
I agree that sex is a good form of exercise and can help clear the lungs but
as we all know any kind of exercise should be done on a regular and consistent
basis.
How often is regular, three times a week, five times a week. If anyone has a
good routine for frequency I will suggest it to my wife and see if I can get
myself into shape.
John Benninger
Date: Fri, 16 Sep 1994 17:13:36 -0400
From: "D.Schubert" <crawford@CLARK.NET>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Re: Sex
On Fri, 16 Sep 1994, John Benninger wrote:
> I agree that sex is a good form of exercise and can help clear the lungs
but as we all
> know any kind of exercise should be done on a regular and consistent basis.
> How often is regular, three times a week, five times a week. If anyone
has a
> good routine for frequency I will suggest it to my wife and see if I can
get
> myself into shape.
Welp, like all of the liturature says, at least 2wice a day, for 20 minutes.
:-)
Just think of the implications for hospitalizations. When the physical therapist
comes to do p.t. and asks you what your best position is...
bye,
crawford@clark.net
****************************
*There is power in a union!*
****************************
Health care is a basic human right
Date: Fri, 16 Sep 1994 17:21:48 EDT
From: DRMRS HAROLD A SOLOFF <TMGC27A@PRODIGY.COM>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: CF, Sex, and Inhaling
Cheryl: you have nothing to be embarrassed about, and it is understandable,
your concern of the linking of CF with masochistic behavior. As for sex and
relieving congestion in the lungs...after 38 great years of marriage, no wonder
I cough less now, than 38 years ago!My wife doesn't cough at all.Never gets
headaches, either.
Antdug's reply was an eloquent statement reflecting the philosophy of freedom
of expression. I don't have a problem with someone's, who has CF, sexuality.I
wish this was the general consensus, but having taught for over 25 years, and
participated in politics for over 40 years, I know better! Americans are a very
tolerant people...tolerant of the murder and decay in our major cities...tolerant
of the millions who are not receiving proper medical care...and tolerant of
Nazi-like generals in Haiti, who murder thousands, only miles from our shores.We
do have a problem with sex, expression, and moral responsibility, among others.
Almost 40 years ago, I got my first "in-home" inhalation machine.It
was great, no longer having to go to the doctor's office for inhalations every
day.It was called a "desk-top model," which it was, as it was as large
as the top of my desk.It had to be cleaned-out with vineger, and parts boiled
frequently.The one I have now, is a DeVilbiss Pulmo-Aide, which is light weight,
and has a handle for carrying.Many of you probably have one like it.Even better,
for a fast sniff, I use the InspirEase (comes in a pouch), and take 2 pumps
of the Proventil.Wow, Prez Bill doesn't know what he's missing!A couple of extra
whiffs of Proventil, and I can play my drums like I did 50 years ago!Of course,
I can't sleep.Exercise, walking, sex, carrying bricks...your choice...certainly
helps with congestion, and depression.It must be a daily regimen...o.k., so
I walk more, now.Taking so many chemicals, depression is an important concern
for those with a debilitating disease.That gets us back to masochism, and I'll
quit, here.
Hal
Date: Fri, 16 Sep 1994 21:31:23 EDT
From: "MjorFlirt (paula baker)" <MjorFlirt@AOL.COM>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Sex, etc.......
ya'll sure have given me a smile today! I just finished reading mail and had
a mental image of the respiratory therapists face when one of us did tell them
what our best positions are!!!LOL!!!!!!!!! Majorly funny!!!!!!! Hal, you and
Leon, keep me in stitches! Thank ya'll for that.. micah has been very whiny
today.. which is not normally his nature.. hoping that he isn't getting sick..
ya'll say some prayers for him as well, please!!!! talk to ya'll soon, paula!!!
Date: Sat, 17 Sep 1994 16:16:26 -0700
From: Barbara Palys <bpalys@GENESIS.NRED.MA.US>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Sex, of course!
Hi!
Once again technology fails me. Due to a problem with my e-mail system, I never
saw the posting on the NYC exhibit that has heated some people up. If someone
out there still has it, I'd appreciate reading it.
Reading between the lines, I gather that masochistic tendencies are attributed
to those with CF?
In any case, I just got to share this newspaper clipping I saved from the Los
Aneles Times, May 12, 1993 entitled, "Flanagan Finds Depicting Pain is
a Pleasure" it continues: Bob Flanagan should be dead by now. A 40 year
old survivor of CF....., he has beaten the odds. But painful medical procedures
and the fantasy world he created in his childhood isolation have left their
mark in an unusual way: Flanagan is a self-described masochist, an artist whose
writings and performances testify to the pleasure he finds in pain.
The article continues.....In tandem with his dominatrix lover and collaborator....this
skinny bantam rooster of a guy.....is best known for "Visiting Hours",
a much talked about and critically well-received installation at the Santa Monica
Museum of Art. Monday, he spoke while tethered to a small respirator which followed
him around on a trolley.
The crux of the article states.... In recent years, however, the couple has
sublimated a lot of their sexuality into our art. In Flanagan's own recent work,
medical issues have taken precedence over sex. "Visiting Hours" was
designed as a hospital wing. The object he said was to approach these two parts
of my life (CF and sadomasochism) honestly.... The piece included such objects
as a toy chest filled with sadomasochistic toys and a gurney holding a bed of
1,400 nails. Flanagan made himself part of the installation, lying in a hospital
bed eight hours a day for the six weeks the piece was up.
Asked about the penchants of other young people who have CF, Flanagan said he
found that girls tend to want to have babies, while the boys tend to run wild,
wrecking their souped-up cars. Both urges are rooted in the same deep desire,
he said - "ways of cheating death".
My thoughts on this whole topic are that CF adults are no different than adults
in general. You have those who are hetrosexual and those who are homosexual,
those who have romantic visions of sex and relationships, and those who prefer
more exotic forms of arousal.
What I found of interest in this piece is the link between the medical aspects
(treatments) of CF and sadomasochism. I have certainly experienced sadomasochism
in the hospital!
As for sex itself....my husband doesn't mind if I cough during intercourse.
He likes the sensation!
Barbara
bpalys@genesis.nred.ma.us
Date: Sat, 17 Sep 1994 18:01:29 EDT
From: DRMRS HAROLD A SOLOFF <TMGC27A@PRODIGY.COM>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: CF and (deleted)
Barbara, Brendan, et al: Living with the misery of this disease, it's great
sharing a few "less somber" moments, together.While having a hemoptysis,
or gasping for breath, one doesn't think about giving someone else a "hotfoot,"
or telling a dirty joke.But, humor is positive, clears the mind a bit, and lets
you focus on what's going good for you, rather than dwelling on CF. At times,
I've considered giving up this computer, as most of my correspondence deals
with CF, and the topics rarely are pleasant.Even though we are strangers for
the most part (no, Brendan, I didn't make my story up...I have my medical records
from when I was a teenager), we are more than "pen pals." I have learned
a lot, despite my advanced age...including, Brendan, how to operate this dang
infernal machine!I love more than "pen pals." I have learned a lot,
despite my advanced age...including, Brendan, how to operate this dang infernal
machine!I love to learn (hated algebra), explore, and see what's on the other
side of the mountain (I was not a peeping tom...no guts).There are a lot of
good vibes on this special Net, and I hope to be a part of it for a long time!I
think I'll suggest, that Phyllis try coughing too, Barbara. Hal
Date: Sat, 17 Sep 1994 15:24:15 -0700
From: Robert Harden <rharden@U.WASHINGTON.EDU>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: escapes
There are many ways to momentarily "escape" from cf. If there weren't
I'm sure we all would be in padded cell right now. Some like learning, sports
or humor to get away from it all. Does any one here find escapes via the arts?
i.e. drawing, painting, sculpting or writing?
Date: Sat, 17 Sep 1994 18:27:42 EDT
From: "MjorFlirt (paula baker)" <MjorFlirt@AOL.COM>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Re: CF and (deleted)
Hal,
you better stay in here.. i live for your humour! LOL!!! we are more than pen
pals.. and always will be.. think we should have an internet cf bash.. sometime
soon! what do ya'll think? Will have to get Leon from Down Under or, maybe we'll
all go over there and party!!!! LOL!!! what do ya think, Leon??? ya'll take
good care and have a good weekend! love,
paula!!!
Date: Sat, 17 Sep 1994 18:43:57 EDT
From: "MjorFlirt (paula baker)" <MjorFlirt@AOL.COM>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Re: escapes
robert,
i have escaped the trauma of having a child with cf through writing.. I have
written a book about cf, diagnosis, depression, prayer, and gene therapy.. all
rolled into one. I have not done anything with it as yet.. well, did try Tynedale
publishing and it got to acquisition and was turned down.. so, i am planning
yet another rewrite and submitting it to an agent...or several!!! Things included
in the book are things i wish people had said.. instead of the things they actually
said.. like" how long until he dies.. " you know, those kinds of wonderful
things.. . at any rate, that is my escape... just thought you would like to
know!
paula!!!
Date: Sat, 17 Sep 1994 19:22:52 -0400
From: "D.Schubert" <crawford@CLARK.NET>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Music
I was listening to the Crash Test Dummies a few weeks ago when I realized they
did a song that all of us could relate to... Made me wonder if the songwriter
had us in mind. Whenever I get down, I just pop it into the cdplayer and have
a listen. Sometimes it does the trick. I've included the lyrics.
Afternoons and Coffeespoons (from the album, God Shuffled His Feet)
What is it that makes me just a little bit queasy?
There's a breeze that makes my breathing not so easy
I've had my lungs checked out with X rays
I've smelled the hospital hallways
Someday I'll have a disappearing hairline
Someday I'll wear pyjamas in the daytime
Times when the day is like a play by Sartre
When it seems a bookburning's in perfect order--
I gave the doctor my description
I've tried to stick to my perscriptions
Someday I'll have a disappearing hairline
Someday I'll wear pyjamas in the daytime
Afternoons will be measured out
Measured out, measured with
Coffeespoons and T.S. Eliot
Maybe if I could do a play-by-playback
I could change the test results that I will get back
I've watched the summer evenings pass by
I've heard the rattle in my bronchi...
crawford@clark.net
****************************
*There is power in a union!*
****************************
Health care is a basic human right
Date: Sat, 17 Sep 1994 16:31:04 -0700
From: Robert Harden <rharden@U.WASHINGTON.EDU>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Re: Music
I have that cd yet had never listned to all the lyrics of that song. It
really is incredible how perfect it is!
On the more morbid side; Crash Test Dummies has another sobg which is on
their other CD that always made me think about myself. It is called Won't
You Come To My Funeral. Sorry. But it's the truth!
later!
Brendan
rharden@u.washington.edu
Date: Sat, 17 Sep 1994 23:03:16 -0400
From: "Michael B. Cray" <mcray@MOTOWN.GE.COM>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Re: CF
At the moment this is directed to Hal Soloff, although there will no doubt be
others to whom I'll have reason to be grateful in the future (I've only just
gotten onto the CYSTIC-L list).
Hal, last November my wife and I found out that our youngest has CF. his
name is IAN, and he had just turned two at the time. (come to think of it, I
had
never heard of CF either). Well, everybody on this list knows what this is
like, so I'll sum it all up by saying that I never knew anything could hurt
this bad. I,m sure everybody has their own particular sore spot: mine seems
to
be that thought that he might not have what I have: my wife, my sons, my
well meaning but dangerous golden retriever, Huey, and well, everything else.
Sharon (my wife) and I are learning that this is as much a battle for hope
andoptimism as anything else. Your example has made a big difference. Since
I'm not terribly eloquent, Ill just have to thank you for the hope.
Here's to puuting up with your nonsense for a long time to come,
Mike
Date: Sun, 18 Sep 1994 02:49:54 -0400
From: "Michael B. Cray" <mcray@MOTOWN.GE.COM>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Re: Need Cystic Fibrosis info
Dan the Man,
I don't know a ftp site. I go through St Christopher's hospital in Philadelphia
for my information. You should also be able to contact your local chapter of
the Cystic Fibrosis foundation. Meanwhile, here's the dubious benefit of this
layperson's knowledge:
The most reliable diagnostic test for CF is still the Sweat Chloride test.
the sweat reflex is induced on the testees arm by hooking up electrodes with
a
mild electric potential. (its uncomfortable, but not painful). The sweat is
collected and the concentration of chloride is measured. A CF afflicted person
has a chloride concentration that is 2-5 times higher than someone without
CF.
needless to say, this test can easily be bungled and should only be run by
someone both qualified and experienced in this measurement. Okay, let's
assume the test is run properly. The odds of falsely indicating CF in someone
who
does not have it are extremely low. When my son was diagnosed, my doctor
informed me that a false alarm can be triggerd only by one of several
extremely rare conditions that are easily ruled out by examining other clues.
On the other side, the odds of the test indicating no CF for someone who has
it are believed to be less than one percent.
Another stage of testing available at the moment is by genetic testing of a
blood sample. This test is actually less reliable than the sweat test for the
following reason: there are at present over 400 strains of the defect that
causes CF, with more being identified every day. Unless the particular strain
has already been identified in another patient, they won't know what to look
for and consequently, won't find it.
I pray that you and yours are well. Please reply back with any specific
questions you may have.
Mike
Date: Sun, 18 Sep 1994 10:52:09 EDT
From: DRMRS HAROLD A SOLOFF <TMGC27A@PRODIGY.COM>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: CF
Thanks, Michael B., and Paula for perking me up.That's the basis for a
support group, information, and good cheer.I'm continually amazed at the
information, and what I have learned from those who participate on this
BITNET.As for Ian, Michael, I hope he has AT LEAST as interesting life as I
have had, and that progress in medical research will make it easier for him
to have it.My involvement with the disease is constant, of course, but I
started to notice, that when I got into my fifties, my lungs stayed the
same, and the digestive trouble increased.There are several means of
alleviating G.I. problems, so I watch my diet, take enzymes (fewer, now),
and take Prilosec, which controls the acid flow better than any of the
other drugs I have used.I am more inclined toward hemoptysis, although
itdoes not occur frequently.The increase in the intensity of my G.I. problems
is probably the result of taking antibiotics for over 45 years, plus all
the other "wonder" drugs that have been concocted along the way.I
have seen
a lot of "cures" come and go, but I believe, that the medical research
being done, today, is more intense, and objective, as there is more money
for CF.Meanwhile, have always wanted to go to Australia....Best to all, Hal
Date: Sun, 18 Sep 1994 12:13:29 -0700
From: Barbara Palys <bpalys@GENESIS.NRED.MA.US>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Escapism
Hello again,
Everyone needs a vacation sometime, and those with a chronic aspect to
their lives may need daily retreats. I think each one of us on this
bulletin has at least two methods of escapism - writing and reading.
Others shared a passion for music (got to find that CD). I remember
thinking that hiring the group "Air Supply" for a conference gig would
be
fitting.
Thanks Paula and Antony for the original Flanagan posting - see you in NYC!
As for children with CF not getting to the stage where their parents are
at - sorry, but in my heart of hearts, I can't believe it. When I was
diagnosed at 24, the CFF literature said I should have died at 20 - major
oops! Contrary to what the PR for Flanagan says, at 40 he is not the
oldest guy out there with CF. A man in Norway lived into his late 70's -
skiing? A woman in the southern USA is in her mid-sixties (diagnosed at
58-ish!), and a year ago, someone at the CFF called me to counsel a newly
diagnosed 74 year old with CF - he couldn't understand why he had to be
treated at a children's hospital by a pediatrician (come to think of it,
I still can't understand why).
Yes, some people with CF will die young, more in their adolescence and
young adulthood, but a good many will survive to become druids on a
bitnet bulletin like our Hal. At 37, I have more than what my parents
had in their lifetime (my mom died when I was 17 of cancer, dad of the
same, two years ago - both not very old).
My advice is simple, parents give your child a sense of balance when it
comes to CF. Don't shelter and protect obsessively. Life, to be
enjoyed, must be lived. Sometimes even perilously so - as demonstrated
by Mr. Flanagan.
Geez, did this turn into a Sunday sermon or what! Sorry, folks.
Barbara
Date: Sun, 18 Sep 1994 12:49:24 EDT
From: "MjorFlirt (paula baker)" <MjorFlirt@AOL.COM>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Re: Escapism
Barbara,
Thanks for your Sunday sermon! You know, I wish that I had had someone
to tell me the things you told everyone when Micah was first diagnosed... I
was so overprotective with him it was pitiful... My other children are still
very jealous of him because of that.. However, all i could imagine was the kind
of funeral i would have for him and to record each of his daily triumphs in
the endless video recorder in my head. I took so many pictures of him. I couldn't
stand the thought of losing him, yet, I never wanted him to suffer. If someone
had tried to tell me not to be overprotective, I am not sure that i would have
listened anyway... Needless to say, this type of behaviour sent me to the hospital
for major depression... It took a very long time for me to realize that given
the opportunity, Micah could be like other boys.. just a boy! Daring as he was
(and is), i would have to learn to live with it and give him the fullest possible
life.. He deserves that, as do all of us! So, ya'll.... even though it is hard
to do, try to let your children be children... it is sad that in ways we cannot
comprehend, the major parts of their lives are spent as little adults. Micah
was hospital smart at two and a half..... when he told the prep nurses who were
trying to put his iv in that he was not Micah! He said it twice, so matter-of-factly,
that if one didn't know better, they would swear he was telling the truth!!!!
I got a bittersweet giggle out of it! Anyway.. this is kinda depressing.. and
i am not living up to Hal's expectation of cheerfulness!!!hahahhahah~!!!!! Thanks
Hal for the compliment! Can't wait to go to Australia! My husband has relatives
there as well.. maybe we could all crash their houses as well!!!!!
Think it would be great fun!!!
ya'll take good care!
love,
paula!!!
Date: Sun, 18 Sep 1994 10:22:36 -0700
From: Robert Harden <rharden@U.WASHINGTON.EDU>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Noticing a trend
Barbra'a last post got me to thinking.
It seems to that those who were diagnosed late in life seem to live very long.
Not to say if you are dianosed at a young your doomed. Definetly not. I.E. Hal
diagnosed at eight I believe. But you never hear of a person being diagnosed
at age 47 and passing on two weeks later.
Why?
CF in many many ways is a case by case desease. symptoms vary as do the dergree
of the symptons. Which treatmeants work best for you. Who can say why one antibiotic
works better for patient A rather than patient B.
This is why I never listened to statistics saying death at 20 or 21. [which
if you've noticed or mainly put out by the cf foundation when they are begging
for donations] I just go by my body. People living only to 10 don't make a difference
in my mind. Nor do (sorry Hal) people who live into thier sixties and beyond.
It's diferent for everyone.
Now I'll stop this post which I'm not sure the pint of it was.
Brendan
rharden@u.washington.edu
Date: Sun, 18 Sep 1994 22:28:23 -0400
From: Antony Dugdale <antdugl@MINERVA.CIS.YALE.EDU>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Re: BEHAVIOR IN A CF 10YR.OLD
David-
Your last letter reminds me of a stunt I pulled when I was in seventh grade.
I became utterly convinced that I wasn't really sick at all, but that my parents
and doctors were in cahoots (or my doctors had deceived my parents) and they
were just lying to me about CF, and were really giving me meds and treatments
that *made* me feel sick. In other words, I wanted to see if I couldn't do just
fine without all their so-called help, and live without the whole regimen of
clappings, nebs, and meds.
So I decided to completely stop all my treatments.
Of course, my parents had a fit. But they were so tired of forcing me to do
it all (I was never willing to do it all before this) that they eventually just
threw up their hands and said "Fine, Do it your way and see if I care!"
A week later I was in the hospital with IVs sticking out of my arm, and even
worse, I had to walk around school for 6-weeks with a butterfly IV on my arm
cos I had to get home IV antibiotics. I think that's when I got my first variety
of pseudomonas. Nothing too bad as us CF'ers go, but with such a prominent marker
on my arm in Jr High ... Ack! I was convinced from then on that I had to do
my treatments, and though my laziness often got the better of me, my parents
didn't have to fight me as actively after that horrible experience ...
Incidentally, my parents were of course racked with guilt and completely blamed
themselves for everything, as parents are wont to do.
So, as for advice, I fear I have none. Sometimes, as Barb observes, it takes
us quite a while to discover the depths of our own stupidity and finally get
a message through to a younguns (or olduns) brain. I wish that I hadn't needed
to learn the hard way, But I for one *did* need to learn the hard way, by coming
smack dab up against my own limits and deciding that I didn't like those limits
one bit and wanted to fight against them tooth and nail!!
I have no idea how your kid will learn his limits. It's very much an individual,
personal thing. Teaching your kid the hard way with his body is perhaps even
harder than letting a kid fail out before the kid finally learns to work in
school (an analogy that became far too apt once my sister started high school).
Hopefully you will discover a more mature and healthy alternative. But if you
do not ... never fear, it is not the end of the world, cos others have made
it through to the other
side of their own (my own!) stupidity ...
peace and health, -ad
Antony Dugdale (antdugl@minerva.cis.yale.edu) o /
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- < |
snail mail: 48 Hubinger St, New Haven, CT 06511 / >
Date: Mon, 19 Sep 1994 05:44:44 EDT
From: Valerie Davis <VMDavis@AOL.COM>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Fwd: RE:Telling children abou...
---------------------
Forwarded message:
Subj: RE:Telling children about CF
Date: 94-09-19 05:39:01 EDT
From: VMDavis
To: Csytic-L@yalevm.cis.yale.edu
What an interesting couple of days it's been at the CYSTIC-L!!! I, unfortunately,
don't have all the letters in front of me, as I scanned quckly through them
with great interest and decided to throw in a few of my comments before I rush
off to work. Hope I didn't get the "wrong messages" in my hasty reading...
About telling your CF children about their health status and CF. Guess what...if
you don't tell them what the "general information" is out there ...they'll
find out despite you and their imagination will go to work over-time! They'll
hear it on T.V. on a CFF ad or see it in print for some fundraising event or
hear it on your answering machine when some well- meaning person calls to tell
you that 16 year old "Johnny" died today of CF...they'll "read"
it in anguished relatives faces that are so upset that they don't know be themselves
around your child anymore; they'll know they're "different" from their
siblings and friends because, let's face it, a forty-minute+ routine every morning
and night, frequent trips to the hospital, going to school with IV lines in
and taking 20 pills a day just sets you aside a bit when your trying to just
be a kid. I never discussed death or life expectancy or the such to any great
extent to my six year old because, I have to admit, I just didn't think to do
that. Yes, she asked me once if she is going to die...so have my other kids
when they reached that age when kids start make observations of the life-cycle
that goes on around them. I gave her much the same answer Paula did, i.e., "we
will all die some day but probably not for a very long time..." etc, etc.,
along with other reassurance of her immediate security. She, like my other kids,
was content with that answer and went on to some other lighter subject. Then
one day I heard her playing with her dolls with her sister and they were playing
that one of her dolls had CF and was getting IVs and was going to die pretty
soon. She then plopped the doll down dead on the floor. Was this play therapy???
It briefly pulled the rug from under my feet, but I was thankful for the chance
to know, it's a heavy burden on her mind and she needs to know some facts about
CF and her future. I have some books for children on CF, meant for the 5-8 year
old which I got out (they deal with CF in a matter-of -fact, positve way). My
CF daughter didn't want anything to do with them at the time. My older daughter
did, so I read them to her. I then realized that she (the older one) was telling
the younger one misinformation about CF. She's two years older and fills the
younger one with all sorts of stories. At least she has some RIGHT information
now and isn'tfull of doom and gloom, I'm sure it'll eventually get back to the
younger one. Older sisters love to educate younger siblings (when they're not
fighting). I think you need to talk to ALL your children about what CF means.
And not just once, but whenever you get ANY indication they're anxious about
their sibling.
Since I heard that doll-playing episode, I decided to be more open with my CF
daughter about not only CF but my feelings to some extent. She fights like a
trapped wildcat to get out of her chest PT and nebs, and during one of our "struggles"
to get these things done I had a rather frank discussion on how CF children
used to get very sick years ago and not be able to breath well enough to play
and go to school and often died...and that she may hear of some CF people who
still die...and that's why we are doing all these teatments...to help lungs
be able to breath better so that she can run and play and go to school and so
she will live to be as old as Mommy. I told her that the stories of children
dying were mostly from years ago before we knew how to take care of our bodies
and that she doesn't have to worry about dying if she does what she has to do
to stay healthy. That worked for a while...sheseemed to be relieved, actually.
Then she started the battle again with avengeance...and I finally had just had
enough of the fight. I realized, even at 6 yrs old, she needed to take some
responsibilty for her health. She took her meds pretty well, "wasted"
the nebs (including the Pulmozyme at $27 a shot!) by either not inhaling or
leaving them nebulize the carpet or DRINKING the contents of the neb to get
rid of it (a suggestion of her sister!) and disappeared when it came time for
her PEP mask or cupping. Within 2 months she was in the hospital for IV antibiotics.
Having raised another child with special medical conditions, and learning from
my mistakes, I believe you need to tell children the truth, try to help them
and show them the right way and let them learn natural consequences of their
actions (good and bad), as difficult as that may be for us to do. I think they
need these things from us, as parents, to help them grow into more secure and
responsible adults. Its quite a balancing act raising a CF kid. I don't want
her to think she has alot of special privileges because of CF and I do treat
her like my other children in the respect that I expect her to be part of a
family and acommunity. I don't pamper her any more than the others and I get
her into the same activites, etc. I expect the same curtousy and productiveness
from her and I give her the same love and truth and tools to deal with the world
that I give my other children. I've told her teachers that I don't expect them
to treat her any differently with some slight exceptions regarding pushing her
beyond her capabilities in gym. I tell her that some people do die from CF before
they become "grown-ups" but that they were sicker than her and that
she now knows that she has to take care of her health to help her not be that
sick. (This past hospitalization convinced her of that). But I also tell her
sometimes CF children get sick, like any other kids, even when they do the right
things.. just not as often, hopefully. Whenever she's in the hospital, she sees
the cancer kids that are so sick and she KNOWS that kids die sometimes. It's
part of the life a CF kid that they learn these things first hand at an early
age. So instead of letting her imagination run wild, I prefer to tell her the
truth and give her PLENTYof reasons to believe she will grow up to be an active,
productive adult...and maybe a mother someday (something EVERY 6 yr old girl
wants to be). She knows that some CF girls arenot able to have babies but some
others do. I don't lie to her. However I made sure she met a local CF woman
who is now 40 years old and has FOUR children (of her own) and was diagnosed
at 2yrs old! There are many things I have to learn from all of you re: CF and
child rearing. Maybe I'm right in my thinking, maybe not..I guess time will
tell that. Either way, there's my opinoin for whatever it's worth.
Sorry for the length of this...I DO get rambling once I get started! :-)
Valerie
Date: Mon, 19 Sep 1994 08:38:44 +0700
From: John McFee <jmcfee@DRES.DND.CA>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Re: Salty babies
My mother in law was a pediatric nurse during the 1940's thru 1980's.
She was told about salty babies not thriving when she started nursing and said
that it was already very old advice at that point. They routinely used to lick
babies that were having chronic unexplained problems with digestion.
John E. McFee -- Usual disclaimer applies.
Threat Detection Group -- They can kill you -
Defence Research Est. Suffield -- but they're not allowed to eat you.
jmcfee@dres.dnd.ca -- - Chuck Jones
Date: Tue, 20 Sep 1994 21:11:43 EDT
From: "MjorFlirt (paula baker)" <MjorFlirt@AOL.COM>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Re: fwd: Escape to Australia and other things
Leon! i thought you were hiding out in fear that all of us might be on our way
over! LOL!!!!!!!!!!!! ( laughing out loud!) (Brendon let me know that not everyone
knew what that was!)
Think it would be fun to come over for the conference, specially since it is
what? close to springtime!? Would be wonderful.. we have relatives in Victoria
as well.. how far from you is that? Always a scrawny little girl, myself, i
never wanted to gain weight.. also had a boyfriend that told me i was too fat
even at 104 pounds (am 5'1) , consequently, even though my dad told me that
a man likes a woman with "some meat on her bones" i never did gain..
and am only 104 now! Conversely, by the way, my sister is very heavyset.. and
my dad told her that a man likes a woman with meat on her bones, but not that
much!!!!! These are fond memories of my dad's last six months here.. with us..
what a hoot he was.. even to the end! Ah! well, think the actual point of this,
Leon, is that all girls go through that.. some more than others.. depending
on how vain the girl is! ( I am very.. but at least I admit it... not vain to
where i look at myself at every given opportunity! i am definately not THAT
good!!! well, anyway.. just watch her carefully.. but try not to nag!!!!! (could
it be i do nag???!!!!LOL) Well, gotta get micah to do his DNASE!!! talk to ya'll
soon, Leon...so glad you are out of hiding!!!! love ya'll,
paula!!!
Date: Wed, 21 Sep 1994 19:36:27 -0700
From: Robert Harden <rharden@U.WASHINGTON.EDU>
Reply to: CYSTIC-L Cystic Fibrosis Discussion/Support
To: Multiple recipients of list CYSTIC-L
Subject: Re: Prejudices
The problem I had with prejudices were from that of other kids not thier parents
In fifth grade (the year of my first hospitalization) all my friends decided
not to be my friends any more. I found out later it was because of my cf and
they were actually makng "bets" as to how long I would live. But I
turned out fine Paula. Don't worry. You just gotta feel sorry for some of these
people. Living life with such ignorance. Sorry for posting something which might
be a little on the down side! Peace nd health
Brendan Healy
rharden@u.washington.edu
smile....confuse people