by Jeff Schaler
December 21, 1994
The Unitarian Church of Anne Arundel, Annapolis, Md.
"Feminists marched in Annapolis yesterday in support of a woman lawyer, Ellen Luff, who was stricken from the voter rolls when she refused to register under her married name."
-- The Sun (Baltimore), August 26, 1972.
Ellen Luff was simply a complex person. We each knew her in different ways and none of us likely knew all of her. I'd like to share with you what I've known of Ellen. I'd like to share it with you imparting the sense of chaos in life that Ellen valued. I'll tell you a bit about what Ellen and I went through together, things she said to me and some things I need to say to her.
Ellen valued being true to oneself, regardless of what others might think. She was an existential warrior in a world of civilians.
I first met Ellen in July of 1988. I'd read about the Norfolk case in the Sun and wanted to help her with it. I tracked her down through the ACLU. I remember they were a little protective of her. The case was very controversial. The Post saw fit to describe it in her obituary. She invited me to her house and ran me through her psychological battery of tests on the Bill of Rights. I passed and we became friends.
We spoke regularly by phone and I talked to her about the myth of alcoholism as a disease and introduced her to the writings of Thomas Szasz. She was very excited about this. We worked together on the case and she invited me to consult with Polly Peters, Stu Comstock-Gay and Susan Goering at the ACLU office in Baltimore. Then we met with Joe Curran, the Attorney General, at his office about the case. It was an honor to be included. That was Ellen's doing.
[Ellen, that's when we first began to disagree. You wanted to stick with a free exercise clause argument. I wanted you to include the establishment clause. I felt some satisfaction when Jack Schwartz, the AG's assistant, asked you why you weren't arguing the establishment clause. You got mad at me and became stubborn. I later realized you didn't want to endanger people's access to AA. Later you told me, as if in a confession, that you'd gone to AA for quite a while. You seemed surprised that I didn't care. We disagreed on a lot of things after that. That's something I always valued in our relationship. That we could disagree and get angry at one another and still be friends.]
We testified in Annapolis together on many occasions. One time on a bill to allow for secular forms of treatment for court-orders involving drunk driving offenses. The bill failed to pass. We were frustrated together. Another time we testified on a bill to establish a state commission to study the effectiveness of the drug war. It was an exciting time. We were heretics together.
Ellen was deeply committed to fighting the madness of the war on drugs. I introduced her to the Drug Policy Foundation and we were on panels together there. We had a blast.
With Kennington Wall, Patrick Murphy, and Stu Comstock- Gay we founded the Marylanders For Drug Policy Reform group. We had a good time with our monthly meetings, town meetings here and there. You worked so hard on changing public policy. The Post wrote a story about us and our efforts.
There was a sense of unity that we all felt as drug- policy reformers. Ellen and I were committed to exposing the myth of addiction as a disease, something that Mayor Kurt Schmoke and the Drug Policy Foundation seemed so committed to. We saw it as just another attempt to dehumanize people who found meaning in using drugs. We broke away from them.
[It's funny the things you remember when a close friend dies and is gone. Ellen I remember your voice on the phone, so many times. "Hi. It's Ellen. How are you?" Then we'd talk about so many different political issues.]
It was while we were deeply involved in M4DPR that she told me she had breast cancer. She said she couldn't take the aggravation and stress of all the drug war madness and told me she had to withdraw. She held us together and the group basically fell apart after that.
I introduced her to Dr. Henry Williams in Lancaster PA and she told me she thought he was one of the most wonderful doctors she'd ever met.
She said she had to leave Maryland. They were re- building Route 50 and the exit to her home. She said to me: "They're cutting down all of my trees." Then she wept. She traveled. She wrote. There was no stopping her. I could sense when she'd return.
[Ellen I remember when we first met. You wanted to show me your "extra office." I followed you through the woods in your back yard and we came upon a picnic table in the middle of nowhere. "Here it is," you told me. We laughed.
Another time when I visited you, about a year ago, we ate lunch on the porch in your little house. It was a sunny day. You said to me when we finished, "watch this." You took all the watermelon rinds and left-overs and threw them off the porch into the tall grass. We looked at each other silently and smiled.]
Those were precious moments.
[One time, a few years ago, you said you needed clients for your law practice and asked me to refer people to you. I said "sure." Then I added that you could do the same for me. You shook her head and said "no, I would never refer anyone to psychotherapy work. You thought psychotherapy was bad. Part of the "patriarchal superstructure."
It was moments like that used to piss me off at you.
God you said "patriarchal" a lot.
Years later you asked to see me for therapy. We'd have a therapy session over lunch together. You'd buy. That was after your breast was removed. You seemed to be having a very hard time. I thought you were becoming psychotic. You'd write to me after each session and say "boy that sure was a good therapy session I had with you. Thanks."
I'll always remember that.
She traveled again and would write long intense letters to me about her experience of the world. There was always a sense of wonder and amazement in your letters.
[One time when you returned you told me that you were psychotic when you saw me last. I said I knew. You looked at me quietly and intensely.]
There were quite a few times when Ellen thought there was something wrong her. That was years before any actual medical diagnosis of her cancer. She told me she was scared she was going to die, that there was something terribly wrong with her. She was right.
This past summer she called and told me that her neck was hurting badly. She asked if I thought she ought to see a doctor and I encouraged her to do so. The pain was getting excruciating in her head and finally after a CAT scan and MRI she called to tell me her cancer had metastasized to her brain. She told me she was dying.
[Ellen I remember when you told me how bitter you were. You said you'd done all those "right" things to take such good care of yourself and it didn't make any difference. You were right.]
Despite all our best efforts we're really all so equally vulnerable to tragedy here.
I visited her at home just before she left for California and brought her lunch. We spent the afternoon together. That was around the middle of September. She was in staggering pain and had to lie down most of the time. I went to the store to get some items and when I returned she could barely speak. I mentioned all the campaign signs along the road to the store. I remember her saying "isn't democracy wonderful?" Still the appreciation for life.
[You did love politics Ellen.]
Then she wrote to me from California. About six weeks before she died. Here's part of what she said. It was the last letter I got from her:
I've only been here 2 1/2 weeks but it is very clear this is the perfect place on this planet for me to be living...I am much better. I am very active and do my own cooking....Am not requiring anyone to wait on me --on the contrary.
I have adjusted my drug usage - dexamethasone, down -- but I am practically pain free. I'm doing lots of relaxation exercises (especially 20 second, on-the-spot relaxations many many times a day); getting lots of massage; hot tubs; having consultations with yoga teachers and other body movement people learning new ways to do yoga and move without FORCING. It appears necessary for me to do everything more consciously, more awarely, in order to avoid pain. My body is now my on-the-spot ever present monitor of my spiritual emotional condition.
It is all FASCINATING.
I have no hostility or ill feeling toward my tumors and the idea of altering my present brain/mind situation does not appeal to me (referring to more drugs for the pain). I feel in a heightened state of awareness--in the state of sensory and metaphysical awareness I have wanted to achieve all my life -- I feel so connected and every day is different and new and a surprise. Who knows why--there are so many factors--my new domicile, the beauty of the area, the power of the Northern Coast and The Ocean, the people the brain cancer, the anti-inflammatory drug, the pain killer, cosmic rays, earth energy, rituals, meditation....Bastet, my cat...And the fact one of the tumors is millimeters from my pineal gland (the "third eye" of Buddhist meditation). So do I really want to inject RADIATION into this delicious stew even if it is very benign? On the other hand, perhaps, it will just add another positive, mind expanding factor. I will be making this decision in the next several weeks.
I have several support groups now. One is for people with cancer (and it just happens to be all women and about 75% breast cancer people)--but I'm the only attendee with a secondary metastasis and a terminal prognosis. I also go to a People Living with Chronic Illness group where I'm the only cancer person -- others have AIDS....and assorted interesting debilitating diseases. And--I discovered, to my joy, a National Brain Cancer Association in San Francisco and it sponsors support groups -- but they are only in S.F. and Santa Rosa but I will be able to hook up with and talk to by telephone other people with brain cancer -- so there is a whole new source of info and bonding awaiting me.
Of course tomorrow could be different -- my state of mind could change, I could be paralyzed, any number of things -- So part of my high is from gratitude to feel good and have the full use of my mind, and be able to walk and talk -- walk (and by myself often) to shops, restaurants, the ocean (5-10 minute walk from my place).
In the last week I was in Maryland and the 1st 10 days I was here I was experiencing a lot of anxiety about my drug use. Actually I was more worried about the drug than the cancer. I was taking an assortment of pain killers -- Tylenol with codeine, Aleve, dexaset (Roxicet) (a synthetic opiate) and then Ambien or Phenobarbital to sleep (my circadian rhythms are drastically altered or non-existent.) I had this constant polluted feeling and a downer feel in my head plus the codeine made me very constipated. When I talked to some hospice workers here they said why don't you take morphine it has the least side effects. So I experimented with using just morphine and I feel much better. Dr. Hahn thinks its a good idea too. He and the hospice workers feel morphine has an undeserved bad reputation. I take a very low dosage --from 3-6 teaspoons a day and I don't wait -- as I was doing before -- until I experienced a lot of pain. I'm very careful who I tell because even in this very tolerant Northern California atmosphere many people consider morphine a hard drug. I have been amazed how much I have internalized THE DRUG WAR! I felt very guilty. Even in my situation.
Of course I do want to experience reality, my life and death consciously -- I do not want to be stoned...So I'm with good reason, cautious -- keep strict tabs on myself -- writing down everything I take, the time, etc., totaling it up each day. I could do without any pain killer if I wanted to. I have endured a lot of pain in the past sitting long periods doing Buddhist meditation - I know its possible -- pain is just another sensation. But right now I don't want the stress on my body-- and the pain was grinding me down. I still have some -- in my TMJ, even with the morphine -- but I can deal with it by repeatedly relaxing...I would like to maximize my experience. I need a consultant who knows and values other states of consciousness...Brain cancer apparently really frights some people. I'm surrounded by peaceful people, none of whom are scared of me.
So write and give me news of your life and Md. especially the Md. political scene...Much love, Ellen
PS After the foregoing cheery letter I experienced 2 days of pain and weakness which was frightening -- and made me think I'm sicker/quicker than I thought and I probably ain't going to be able to last that long in this body.
But then today I felt much better. So I'm going on the assumption my above described illness was caused by not eating enough, not eating as soon as I get up, not eating (I now apparently have low blood sugar). Also trying too abruptly cut down on the dexamethasone and morphine. I feel more confident today that my body will guide me...I'm adjusting. WRITE. Ellen"
Ellen Luff did not fear death. She viewed death as the culmination of her life, less the lack of life, as Foucault, a favorite of her's, might say. She faced death fearlessly because she faced life fearlessly. She was a heroic individual, as Ernest Becker had written. I gave her his book, The Denial of Death. It became one of her favorites.
And so I'd like to close with a passage from Becker's book, because I think he describes something that both Ellen and I understand too well. It's an understanding that brought us together and keeps us together in spirit. It has to do with the fear and trembling and sickness unto death that we all struggle with in our various ways, but Ellen knew it only too well:
"What are we to make of a creation in which the routine activity is for organisms to be tearing others apart with teeth of all types-biting, grinding flesh, plant stalks, bones between molars, pushing the pulp greedily down the gullet with delight, incorporating its essence into one's own organization, and then excreting with foul stench and gasses the residue. Everyone reaching out to incorporate others who are edible to him. The mosquitoes bloating themselves on blood, the maggots, the killer-bees attacking with a fury and a demonism, sharks continuing to tear and swallow while their own innards are being torn out- not to mention the daily dismemberment and slaughter in "natural" accidents of all types: an earthquake buries alive 70 thousand bodies in Peru, automobiles make a pyramid heap of over 50 thousand a year in the US alone, a tidal wave washes over a quarter of a million in the Indian Ocean. Creation is a nightmare spectacular taking place on a planet that has been soaked for hundreds of millions of years in the blood of its creatures. The soberest conclusion that we could make about what has actually been taking place on the planet for about three billion years is that it is being turned into a vast pit of fertilizer. But the sun distracts our attention, always baking the blood dry, making things grow over it, and with its warmth giving the hope that comes with the organism's comfort and expansiveness. "Questo sol m'arde, e questo m'innamore," as Michelangelo put it.
...I think that taking life seriously means something such as this: that whatever ...[a person] does on this planet has to be done in the lived truth of the terror of creation, of the grotesque, of the rumble of panic underneath everything. Otherwise it is false. Whatever is achieved must be achieved from within the subjective energies of creatures, without deadening, with the full exercise of passion, of vision, of pain, of fear, and of sorrow. How do we know - with Rilke- that our part of the meaning of the universe might not be a rhythm in sorrow? Manipulative, utopian science, by deadening human sensitivity, would also deprive ...[women] of the heroic in their urge to victory. And we know that in some very important way this falsifies our struggle by emptying us, by preventing us from incorporating the maximum of experience. It means the end of the distinctively human- or even, we must say, the distinctively organismic.
Modern ...[men and women]...[are] drinking and drugging ...[themselves] out of awareness, or ...[they] spend...[their] time shopping, which is the same thing.
We can conclude that a project as grand as the scientific-mythical construction of victory over human limitation is not something that can be programmed by science. Even more, it comes from the vital energies of masses of men [and women] sweating within the nightmare of creation-and it is not even in [our] hands to program. Who knows what form the forward momentum of life will take in the time ahead or what use it will make of our anguished searching. The most that any one of us can seem to do is to fashion something-an object or ourselves-and drop it into the confusion, make an offering of it, so to speak, to the life force."
And that's exactly what you did Ellen. You became the heroic individual that Becker was referring to. You blazed the trail for the rest of us. You loved life and all of us a part of your life. You cared deeply and courageously for the disadvantaged. You valued liberty, justice and love above all else. And we are a better world because of you. Thank you for everything you've given us.
And now, as Dostoevsky wrote, "...here begins a new
account, the account of a woman's gradual renewal, the
account of her gradual regeneration, her gradual transition
from one world to another, her acquaintance with a new,
hitherto completely unknown reality. It might make the
subject of a new story - but our present story is ended."
© Copyright Jeffrey A. Schaler, 1997-2002 unless otherwise stated. All rights reserved.