On Thursday, 12 Sep 1996 Joan Irvine's husband sent this, her last message for her many friends. To her memory this page is dedicated

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

Some responses from a few of her many friends

For Joan Irvine

I suspect all of us sitting before our keyboards, feel the undertow as the waves of emotions wash over us. Hands shake, tears flow -- emotions don't translate into words. How does one transform into words the immensity of our sadness and Joan's sadness, of our loss of a friend and her losses, of our frustrations and her frustrations, of our pain and her pain, of our need for change to bolster hope and her hopes, and all the feelings that become so magnified at a time like this?

Joan was and is a member of our extended family -- a family of people understanding each other, helping each other, sharing, hurting, crying, laughing, screaming, and trying together. Joan will always be with us in memories of all she has shared and all she has given.

Joan made it clear in her final note to us that words are not enough -- that we need action. Joan will live on not only in our memories, but in our actions -- actions that did not come soon enough to save her from her pain and despair, but actions that must be taken to save others -- to save all of us. With that in mind I pause in silence and then will proceed with my efforts -- efforts to save all from the whirlpool of trauma that this syndrome imposes on so many.

Joan, wherever you may be, I will not remove your name from my e-mail address list and in my thoughts I will send you words about our efforts and our gains, and as they come I will keep saying, "Joan, this one's for you."

John Friedlich

Joan, We can only hope that you are laughing now. We cannot, not for awhile. Jean Bonnes New York City

Hello Everyone, Minus Our One...

I have tried for several hours to overcome the grief of losing one of our own again...but I am slowly realizing that the grief cannot be overcome, because the sorrow includes the knowledge of an unneccessary, added pain that Joan had to bear in addition to the pain of this affliction we all share...the pain of invalidation...public derision, scorn, disbelief, and even being laughed at. Mostly because of a name: Chronic Fatigue Syndrome. After watching yet another misinformed report on NBC Nightly News, Joan lived her last hours. What a shame that she couldn't have watched an inspired program that told the truth of this disease, and how it affects all of those afflicted. A report that informed people of the seriousness of this disease, and did not cause yet more suffering with unkind, thoughtless words that conveyed such contempt. How sad to know that the news report she last saw, as she suffered in great pain, was yet another misinformed slant meant to cause doubt in the public's mind about the "questionable" disease known as Chronic Fatigue Syndrome. How utterly, sorrowfully, sad.

Goodbye, Joan. We shall always miss you.
Cyndi Russell

Well, I don't have any blue candles, but I did light a candle.... and then I wrote a poem....

On Thursday evening, following weeks of unrelenting pain, not relieved by the strongest painkillers I could be prescribed, I watched an item on the news, an item of chronic illness and euthanasia. A doctor being interviewed said, "The medical knowledge in the management of such illnesses and the control of pain that we have today makes an option like this (euthanasia) unnecessary." Dreading another night of extreme discomfort, another day of such unrelenting pain, I had thoughts of suicide. Knowing that an 'OD' on painkillers don't always do the job, and finding out I hadn't a sufficient quantity of sleeping tablets to ensure no re-wakening, I crawled onto my bed to relunctantly survive another night, not having the courage to face a failed attempt.

On Friday morning at 8 am I made my painful way to my computer to download my email and news. The first message I saw was that reproduced above, that heartrending last post from Joan. As I read the words she had written, the tears flowed freely. I could hear Chris de Burgh singing 'Carry me like a fire in your heart'.

It isn't the first time I've considered such an option, no doubt it won't be the last, but for now I will, for the sake of Joan's memory and the memories of all those who have succumbed to ending this living death, carry on, and carrying on will always carry them like a flame in my heart. That song will always be a reminder. Joan was well known to all of us on the Internet community that suffer from this terrible disease, full of positive ideas for activism. I will not let that memory die. I will miss her posts. I will continue to fight for the things she fought for, despite the pain, both physical and emotional, despite the ever increasing cognitive functions, and despite the scorn of those members of a profession who slight us with their cruel words and brush us aside because of their own feelings of inadequacy. God grant that they or theirs may never succumb to this. Kay Robinson

The presents of the day

When every day contains its little death, what wonder if some days we can't all make it through this darkness? sometimes even the candles we light drown. still we are not our illness, or our ends. the gifts we leave behind are those we give on every day while we can still continue. the courage that it takes is shown in every post we make here every day. here, we are saying, i am still here, i have remained myself, not to be set aside, discredited, made valueless, i am still here, still reaching out, still listening, accepting contact, understanding, love, terror, and rage, i am still here, lighting another candle helping, sharing hoping, reaching giving myself at least for this day i am still here to thank you for remaining here for me just one more day. with love, Jill Robinson

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