Joan Irvine

In Memoriam - Joan Irvine

On Thursday, 12 Sep 1996 Joan Irvine's husband sent this, her last message
for her many friends. Joan had ended her life on week earlier.

 To her memory this page is dedicated



Date: Thu, 12 Sep 1996 17:11:56 -0700
From: Joan Irvine
Subject: CFIDS ACTIVISM *NOW*

Hi to all: My time--I pray--and thoughts are limited this day. I want to say
you all have meant so much to me. You've been a family, of sorts. I do have
a family of 2 brothers, several cousins, neices, nephews, and a
sister-in-law. The cuzs and sis have tried to be of tremendous support to
me, but have also been in great denial. The brothers, The Honorable James
Woodworth Luther of Ukiah, Calif., and John Morris Luther of Truckee,
Calif., have been minus-zero in the support/communication department.
I recently wrote a non-CFIDS friend about "brain fevers" I've been having;
she responded that she'd remember THAT one. That it was one of the funniest
she'd heard in a long time. She is still, to me, now, a most cherished and
wonderful friend.
But with all of you I could be honest, myself, my truest self. Thank God for
your capacity for caring, even tho' you, also, have problems that we all can
understand.
Now I want to say that there's been some talk of waiting to demonstrate
until May 12. CFIDS Memorial Day in 1997, I predict, will be chocked-full of
worthy activity. PWCs in the past have tried to do all they can.
For what's going on right now, HOWEVER, re'the NBC Nightly [Views] that
aired another Curren story 9/5/96, citing not one authority to back up its
accusations--we need to act NOW. I wish I could be there,, I do not want to
die; I want to live and serve and travel in an upward direction, and maybe
that's my problem: That I'm just not able to accept my limited-to-non-life
the way it's become (tho' I've tried plenty hard via spiritualism and even
plain old will-power) to make upscale changes. I can take it no longer and
this day that I've chosen to be my last is much calmer, more soothing.
It's taken a long time to get here; I've thought of suicide for years, when
the pain's too much to bear. For me, right now, the latter's still the case
and so too is my inability to accept the grief, the meanness, the lies,
cover-ups, the subjective reporting, the all-out fiascos of non-truths.
A demonstration in the vicinity of NBC seems God-awful mandatory right NOW.
Get inside the building if possible and chain yourselves together (by
wheelchairs?). Go with a typed note, saying you will not leave until you're
all able to meet in the presence of the NBC OWNER. Be peaceful; say not a
word. If you're not granted access into the waiting area of the building,
then block the doors--as many as there are.
Be aware that you may get arrested, so have someone there at all times to
video-record the entire event. Be sure the recorder catches on tape any even
minimal type of abuse.
(And would not some type of lawsuit, perhaps re' Curren' character
assasination, be in order? Or am I out-to-lunch on this one?
For other demos, God almighty, we MUST do so with signs, etc., within the
vicinity of the CDC and the NIH CFIDS research areas. Naturally, notify the
press beforehand.
There are too many wise-crackers out there, getting a laugh at our expense.
Remember "If you can do it for others, you can do it for yourself." Those
who are concerned about its being contagious, yeah, it most likely is. And
after the public learns this, they'll probably do a 180 and perhaps even
avoid us like the plague. This short-term realization won't last forever.
But the other short-term easier way is to contine huddling, holding back.
See how far that gets you. Are you going to let the brave others do all your
work to get your rights for you? This is time for RADICAL action; I can
determine no other possible way we're going to get the serious attention we
deserve.
Letters, in my opine, have lost their "edge" and become sort of like those
obnoxious adds we get in the mail and simply toss, without reading. This is
unfortunate and has nothing--nothing at all--to do with the effectiveness of
our abilities to clearly make our points.
From my early riding days, my instructor told me when I learned to jump a
horse, "Put your heart over first and then simply follow it." It worked.
Joan Luther Irvine -- 1947-1996 --CFIDS complications Sedona, AZ. Daughter
of Helen Elizabeth (Woodworth) Luther and John Morris Luther, Sr., both
deceased. Wife of Brant Clark for 16 years; previously wife of Thomas
Derelict Seck and later George Norcross Irvine, III. Mother of Joel Spencer
Seck, whereabouts unknown. Author, lover, trainer, and care-taker of
equines; graduate of Sacramento State University, 1979, in English and
Geology. Environmental Anaylist for the County of Sacramento. Editor of
CALIFORNIA HORSE REVIEW.
"I have no qualms about the quality and wonderment and beauty of my life,"
she said to herself. "I had the best of lives--a good, active, and
productive life for 41 years. Who could ask for more?" Lover of truth and
humankind, of all living things. Avid hiker, back-packer, tennis player,
swimmer, and walker. "My constant refreshments," she added.
My love and hopes of healing to you all, --Joan.
P. S. Dxed by Daniel Peterson, M. D., 1991. Had since 1988, when flu came on
full-blast. However, experienced panic attacks and signs of CFIDS since
1973.
By early 1992, in intractable pain. Referred by Jay A. Goldstein, M. D., to
a pain clinic located in West Covina, Calif. Attended once per month;
prescribed mucho (my remaining vials will remain for count and content)
Methadone, to which I was allergic; also Demerol, with no effective impact;
many others in beaucoup quantities; Darvocet, most effective pain reliever,
but when pain, despite drugs, was unbearable, very serious about ending my
life, but too weak to do anything about it.
Also tried Imitrex injections, Lydocaine, etc., etc. Even one-day remissions
hardly ever.
Recommended New Names for CFIDS: Hardly broad enough, Reptilian's Desease
describes the limitations CFIDS has placed on me; can handle temperature
range between 65 and 85 degrees. Otherwise, symptoms worsen. Also hand and
feet "gripper" skin changes makes me feel like a reptile.
Also thought of Pygmalion's Disease, because of the way our symptoms change,
the way we're all slightly different in symptoms, the fact we appear well to
others, when we're feeling horrible inside.
Brant severely disabled from Post-Polio Syndrome. Lots of fighting; late at
night, too. Oh, no! Did the neighbors hear us? Many times of sever crises;
accusations; threats; bouts of irrationality.
Brant down-and-out walked right out the door, leaving me for 8 months alone,
in 1992. My health rapidly plummeted. He came back . He will need lots of
support, tho' he'll pretend (probably) he's "just fine."
TO BE SENT TO
--Gail Kansky of Massachusetts Support Group and to
--The CFIDS Association in Charlotte, NC