[Music – Native American flute][Two bikers in silhouette slowly ambling down bikepath]
Some people say we start dying the moment we are born. Are we always traveling two roads – the living road and the dying road?
[Music ] [Circle of friends at remembrance gathering 1/2 year after Joan’s passing]
(Friend): Now that we have really established the circle, and we have cleansed we are just going to share, reminiscence, things, dreams how our lives have been since the last time we came together, because this is a healing circle for us too, those of us who knew and loved Joan.
(Friend): Right after all her stuff was taking out of her apartment I went in there and all the wallpaper was gone. You know it was kind of a weird trip. The house getting torn down just like how the transience of everything.
(Friend): It was the death that I got to be so involved in that it was complete for me. Last July I was at Joan’s house to midnight almost every night and what did we do? We sat around and talked about her entire life.
(Friend): We basically, she knew and we knew that she needed to do this to die and it was good for us and good for her and we looked at slides and she told stories and it was so wonderful that I remember feeling when she was dying that there wasn’t anything that I wished I could have said or could have done. That this was a case, for me, where I had enough time.
(Friend): I learned so much from Joan. I can’t imagine a more natural or embracing way of making the transition then what I saw with Joan.
(Friend): She loved life so much. You know but how can you know how you would feel if you were in that position?
But, you know it just made me think that same thing. Well god, I mean the passion that she applied to just trying to stay alive, if you have the good fortune of being alive you could apply to doing what you love to do.
(Friend): Yeah, it is good to hear all of your stories because it certainly puts back on me, you know, is this a good day to die? If you really do have one foot in the grave and the other on a banana peel, which I sort of feel life is like that. You just don’t, you know you like to think you have a plan but god knows I have been spun around in my car a few times. You know, where am I, what am I doing and like just coming into what matters. The gift of the short corporeal real life.
[Music - clarinet and piano]
(Joan): I just like the peacefulness of this picture and the openness. It looks like it was a cool day. So I feel good. I feel I can see myself breathing in that photograph. And I am holding the rock up with my finger because I have gotten so strong and he is doing a handstand. I just wanted to show me my yoga, the strength of my body and how I did take really good care of myself. This is when I am graduating from chiropractic school. That is how I looked. That is where I was at that time in the world. It is interesting having gone through these photographs because I have seen how my face has changed all along. This is not what I thought I would look like, you know. But it was like, oh, this is really not a different process.
(Friend and filmmaker): Joan was a friend of mine and a colleague. We had offices just down the street from each other. In 1990 Joan discovered a lump in her breast and she went to an oncologist. He found that it was breast cancer.
(Friend): The lump was removed but it turned out that pathology tests showed that they hadn’t removed all of the, hadn’t gotten all of the cancer. So I think she then had a second lumpectomy. That didn’t do it either. At that point, one would generally have a mastectomy but Joan didn’t. The M.D. she was working with in New York persuaded her that the program that she was on would take care of that and she didn’t need to have the mastectomy and she believed him and went with that.
(Friend and filmmaker): And she decided to come to me in late 1991. I thought the lump was still there or a new one had grown. I asked her and begged her to get another opinion but she said no, that she trusted the doctor she was seeing.
(Friend): She was on that program for two years. She was really faithful. She did it all right and still she had this lump in her breast that grew and grew and grew. She finally went to see a surgeon and finally took the surgeon’s advice to have a mastectomy. I think that was 1993. Her surgeon told me later that she cried when she opened Joan up because the cancer was everywhere. It was all in the chest wall. She had to like dig it out from between the ribs. A little while later it went to her lungs.
(Friend and filmmaker): When I first saw Joan in my office I had the feeling that she might not make it and I decided to videotape her as a way of remembering her and as a gift to her friends. It was only years later that I began to see the real reason why I was filming Joan during the last two years of her life was that I had never drawn close to someone who was trying to die consciously. And out of Joan’s struggle arose vital questions about my own mortality and my own fears of dying.
We know everything changes and dies so why do we resist our own change in death?
(Joan): This really isn’t that bad. I’m on oxygen twenty-four hours a day. That is not really that bad. You know, next week I’ll probably only have it on half time or something and that may be true, and of course, I hope it is. I think that is the trickster again, you know that is like, oh next week. Next week it will be different, I will be better. And here I am today it’s like, there is no next week. You know? There have been moments when it has been really wonderful. It is like ohh!…this place of peace. It is like moving slow and not having to rush somewhere and not having schedules and again having space to take more of what is going on around me in. And there has been impatience. I want to ride my bike. You know, I want to swim. I guess I have learned a lot about my adaptability with this illness and having been a very athletic outgoing moving, driving person to literally come to a point where I am plugged in. Ha!
(Friend): Joan did things her own way and you could not tell her what to do. She was an incredible daredevil. She would do anything, and she was always looking for new peaks to conquer and new thrills. This was very much at odds with what was expected in her family in the Bronx where woman were expected to take on a fairly traditional Italian, Catholic role and that did not fit Joan at all. So Joan had to leave her family to follow her path. So it came about that she was not surrounded by her family, all except for one sister and her nieces. The people who were around her in her last year or two were her friends and her community. And it may have been one of the reasons that Joan was open with her life and with her dying and invited people in.
(Friend): Joanie didn’t want to become part of a group at first. She was just exactly as I was about it. She absolutely had no interest in it. She had a strong support community, just as I did and didn’t have any interest in this whatsoever. But I convinced her the same way I was convinced. Look, we live longer!
(Friend): So being able to talk about full dimension of actually living, living even more fuller. Like what is the insight or the gift or the wake-up call that having cancer has given to us. To be able to share that in a group.
(Friend): Right, which is what we did. So to tell your story with other people who really understood at a level that nobody else could understand, not my husband or my children or my mother or people who loved me dearly. None of these people could have possibly understood as well as everyone in that support group. It was a sisterhood from it. I think Joanie felt the same way because we talked in the early days when she did not want to be part of that group. She knew that it was a safe place to be, that she could tell the story, have others hear it, that nobody would be criticizing her in any way whatsoever but only there to love her, commiserate and help in any way possible.
If there is time after death first whispers to us, how might we live differently?
(Joan): Well, I am breathing a lot better. Not on oxygen. I went bald. I had several surgeries. Living in a different place. Living in a different body. The last time I was so ill that I had a lot of will about living and it is not that I don’t still have that will, I just have more openness about the possibility of dying. And I feel like if this new episode is about that, if it is about dying, that what is important is for me to gather people around who can help me in that direction.
She was crying. I came into her house and she was crying and crying. I said, Joan, what is the matter? She said it’s just awful. I just saw it. She had just seen it. They had just taken the bandages off and instead of being flat it was, you know…
Yeah, because they took the muscle out.
Where there was a mountain, there was now a crater.
I said you have to let me see it. You have to face it. You have to just, you know.
Well, see this is why she asked me to take pictures of herself. She said I want you to take some photographs of me because I look in the mirror and I don’t know who I am, and I just want, I want you to be a mirror for me she said. So we took these pictures and then she spent a lot of time looking at them and she even did some drawings from some of them.
(Friend): If you think that Joan didn’t sob her guts out sometimes then you are way wrong. You know, who wouldn’t? You have your body cut open again and again and again. You are in tremendous pain. You don’t have your breasts anymore. You don’t have your identity anymore. You don’t even go out anymore. You don’t know if you are going to live or die. Everyone around you has their opinion about whether you will live or die and what you ought to do and you have to manage everybody else’s fear on top of your own. I mean it is a big orchestration to be very sick and conscious.
[Joan is looking at a handful of pills and tablets on her table]
(Friend): How many do you take at a meal?
I would say thirty is a reasonable number, give or take one. Sometimes I just can’t even take them. It is too much for my body.
Joan rose from her ashes. The chemotherapy worked to the extent that she had a complete remission, she had no more cancer in her lungs, she had no more cancer detectable anyplace else and so she went through a period where she was fine.
(Joan): I milked the cow this morning and went out to the hens to get us some fresh products for our meal today. They’ve been made with tender loving care. We are about ready to sit down. Am I eating alone?
(Voice of friend): Then some months later it came back in her bones.
(Joan): Of course, they think that it is a tumor pressing on the cords so their suggestion was to have radiation. Which I have had three treatments and I don’t like it. I feel like my throat is on fire and my lymph nodes and my chest are up or swollen and I feel weak again and tired. And we’ll be negotiating this coming week about lowering the dosage, and I have a very strong suspicion that I will not complete their recommended treatment. And the threat is that if it is tumor I will be paralyzed. You know, I don’t want to be glib. It would be difficult to be paralyzed for sure but there is also a sense of… …there’s a sense of surrender…
Sometimes her bones hurt so much that we would just, just do these quiet holds. Just to be there. Just to meet the pain. To ask nothing of the body but to pray for some peace and some comfort.
(Joan): This body has gone through a hell of a lot and I am just tired of going through the ringer and we’ll put things into my body that are only healing and that means no more chemotherapy. And if that means I die, then I die. I like the idea of being liberated from this body and not being in pain.
Can we surrender to the inevitability of death and yet still fight to live?
This is a drawing that I look at every morning that my niece Christine recently made for me.
(Niece): What other exciting things do you do?
(Joan): I would take this bicycle and I would ride up this huge hill. It was tortuous to get up and I would wait to as many cars would get off the road as possible. Then I would cruise down this hill, speeding, speeding. Tears would be coming out of my eyes I would be going so fast. I would be passing cars that is how fast I was going down this hill and I would think, oh God, if I hit a pebble the wrong way I am dead meat, because that is how fast I would go and it would be thrilling. I would do that a couple times. That was exciting.
So issues about feeling abandoned had come up. Or that people are going to abandon me because I have been sick too long and I am boring and I’m no fun to be with because I can’t do things.
[Joan tries to get up from lawnchair and…ultimately succeeds]
(Voice of friend): Having vulnerability is not weakness and showing vulnerability which she did over and over, I mean she had to learn how to do that but she did, was the most courageous and the most strong thing that a person could every do. For me, that is what touched so many of us that knew Joan. It was so inspirational to watch her in the face of her mortality. She just kept opening and opening and opening and that was her strength rather than a weakness.
Voila she’s up.
(Joan): Hello. I look fat, chubby and healthy because I am on steroids. I’m fooling everybody.
Your hair looks beautiful.
My hair looks beautiful?
It’s going to be here for another 2 weeks and then I’m going to be bright red and bald. Western medicine refuses to let my hair grow. Every time I get to this stage they want to chemo or radiate it off.
[Joan visits the radiation dept and her doctor at the hospital]
[Joan sings] These boots are made for walking and that’s just what they’ll do. One of these days these boots are going to walk all over me. Ha. Ha. She went delirious for her last few moments.
I’m really Raquel Welch playing a woman with breast cancer who is metastasized to the lungs. Recovered from that. Bone and now brain. I was going through the organs last night. Hmm. What’s left?
[Joan has radiation treatment]
Does radiation make you really nauseous?
I feel like I am pregnant. I’ve decided I’m never going to be pregnant. Ha. Ha. Ha.
(Doctor): What is going on with the right eye?
Oh, left eye?
(Joan): Trick question. My right eye? No. Let’s see, it feels now that it is like slightly blurry. I don’t know how you feel. Like in my mind I thought I wonder if Al sees me as terminal now? Which has a different ambiance in way of dealing or treating me as opposed to last year. Although, last year I looked pretty terminal too. Last year I clearly had chemo as an anchor and that isn’t here, but I just need to get a sense, I want to hear what you are thinking. I want to also tell you what I am thinking, that I don’t feel like I’m in denial. I feel really clear that this is a big load here and I am taking care of business and doing my ceremony and talking about the whole dying process and also not losing hope. You know? That you still see me as this viable being who, yes I have cancer, but there are still possibilities. Do you know what I mean, Al? Just don’t put me in this terminal, like “I’m just going to make Joan comfortable.” Do you know what I mean?
Okay. Good. Thank you Al.
(Doctor): The truth to the matter is I don’t put people in the categories on the way along their treatment because it is not constructive to me to say okay, we are going to change, approach you differently. Not in terms of throwing diagnoses and prognoses and terms like “terminal” around. On the other, hand every time I see you and try to understand where your disease is at I have to be thinking what is the most appropriate things to offer, based on what I know about what I can do at this point, and so my tools will be different. What you are doing in terms of planning for the end of your life and what you are doing in terms of planning in terms of getting enough support at home are all the right things.
But I don’t want to get bogged down with saying good-by and things like that because what we have got to do is we have to go on with the process of your living.
Right. That is what I like to hear.
(Friend): I think it is really clear because nobody likes to feel, oh, you are going to die and now we will just make you as comfortable as… I mean nobody wants to hear that. Even if they are not in denial. They just want to say but I am still alive and I am still here. I’m still here.
(Doctor): The things we can do to help you feel better and more like yourself. Not just feel better but try to restore some of the person you were.
Yeah. Thanks Al. You are wonderful as usual.
Okay, you have to turn this off because I have to hug her.
Take care of yourself.
Give me a call if you need me?
Think of me biking next week.
Good. I hope you do.
When we accept it, when we finally accept that we will die, what passes away and what gets borne?
Joan was told on July 10th she had the brain tumor and the doctor told her she had two weeks to be conscious if she didn’t radiate and if she radiated she would have six months. And she just said she didn’t feel like she could get everything done in two weeks.
(Joan): So that’s the condition. So they radiate me to keep me around for a little bit longer. It is like I was realizing I was on this tightrope of --– am I living, am I dying? How am I walking through the day today? To get ready to die? Or am I walking through the day to get ready to live? It is neither here nor there. All I know is I’ve got today. Whoever comes to visit or hang out that is what I got. You know I look at these pictures of me when I was mobile and physically able and I just wonder what the possibilities really are to regain some of that. I don’t know. I haven’t a clue.
(Friend): I remember this one time that she just started cracking up laughing because she said, like all this time we’ve been worried about after I die are you going to be able to recognize me? She said what if I don’t recognize you?
(Joan): How am I going to know them? You know? It mean it’s like, it was interesting, you know here people on earth and someone is dying, you know like I am going to this other place and because you guys are here you have access to me. You know, from my past belongings or pictures or memories and I am going to this other place where I don’t know what I am going to look like, what is going to be out there and even if I am going to be able to recognize you people or come back, or, like, what the hell! It’s such a joke! It is such a joke. I mean this thing of attachment, and I have it. I mean, I am scared of dying and going to this other realm that I don’t know. You know, you can read multiple accounts of what it’s supposed to be like and who knows what’s real?
I believe or have believed on a certain level that with my mind and the ability of the mind then why can’t I grow more breasts? I mean that is how, that’s a thought. I mean it is like, that shouldn’t be impossible. And there really is a part of me that is like– it is not impossible and there is also a part of me that is like– you’re crazy. You are out of your bird.
I don’t think it needs to be qualified. I don’t think it needs to be Joan died of cancer. Joan’s dead. You know, Joan died. I just die and I walked a good way. I did. And that is really all that I want to do. I just want to walk in a good way and still, with a sense of who I am and my values and, my friends and I was thinking to the very end about my life and what was important. And I didn’t just stop and give up because someone gave me a diagnosis. That’s what I want people to say, you know? Joan died but she walked a really good way.
Can we fully live if we haven’t fully accepted that we will die?
[Healing/Dying Ceremony in a wooded field]
[Friend singing] Grandmothers of the West I see you looking at me. I pray to you, pray to you, pray to you, pray to you. I see you looking at me.
(Friend): Today, we pray for Joan’s healing and we ask that you grant us to release into our song, into our voices, into our memory, into our love for Joan and of course always into the expectation that there is unlimited possibility for healing while releasing our expectation of what that looks like.
(Joan): So often I sat at your alter calling you. So, here I call you again, looking for my reflection. I stand before you and I ask to rest before you now. Come take me home. Come shine before my friends. Show them the beauty before them. Blessed be. And so I ask for your prayers to help me move quickly and smoothly on my journey because I am really ready to go. So that’s what this is about.
(Friend): For years and years I struggled just to love my life and then the butterfly rose weightless in the wind. Don’t love your life too much it said and vanished into the world.
[a week later at home…]
And what’s going on now for you?
(Joan): Well… I am alive.
(Friend): When we met again not long after the healing circle I remember her thinking that it had healed her. I think she really took away a feeling that all of that love healed her.
(Joan): You know I have done a lot and so like, geesh, now I am going to leave? When I finally get it. You know in a certain way I would like to bask in the lessons and relish the lessons that I have learned. Where is that letting go? Do I just let it go and stop pushing my body and putting my body in a painful state and just let go and let the cancer take me away? Why is it that death pushes us to this place of such open-heartedness? That’s sort of bittersweet…
What does it mean to heal? Can we heal as we die?
[Joan is wheeled in a wheelchair out in nature]
(Joan): What a beautiful day!
I saw these great birds, but I didn’t have my binoculars and I didn’t have my bird book and then when I got home I couldn’t figure out what they were.
(Friend): She looked really peaceful at the end. Like she, like boy she really has done a lot of work. I just think she came into this life and it was like, before she came in she said, you know, I’m really going to do a lot in this life. I am really going to get some work done. And I think she did.
[Crows cawing. Joan is looking through binoculars, sitting on a overlook]
(Joan): Crow. Brother crow. Birds are so quiet when they fly, riding the air currents. Effortless flying. Like effortless living. Could that be possible?
(Friend): So maybe what it is is acceptance of death. And maybe what it is is that we all go around all our lives fighting this thing. We have this energy that is going toward fighting fear of death. We are just behind all of our fear and our insecurity. Maybe there comes a time when you just drop it. And then for the first time in your life you are free.
[Joan in her kitchen, with a friend looking at her bald head]
(Joan): Blake? I think I have less hair. Remember I had those patches of hair?
Are they still there? No, right?
(Friend): They are but, yes, like here is the little pattern. Here is a pattern, here is a pattern, here is a pattern. It is all in here and then you have much less right here. You have nothing there. It is not growing very fast but it is patchy and then you have none down here and none there.
(Joan): I hope I am not going to be one of those people that have to comb my hair across my scalp.
Here try this Joan, here. Joan as a blonde.
How do I look? Huzza, huzza, huh. Oh baby get that hair out of your eyes.
I feel weird! Oh God!
[Joan soaks her feet in a purple liquid]
(Friend): What is the purple stuff and why are you doing such things?
(Joan): Well it is a herbal remedy called tea elixier. It’s an herbal extract and it supposedly has cured people with terminal cancer within a month. So it’s harmless.
(Voice of friend): I think Joan could not be less like a poster girl for breast cancer. Except, in so far as everyone is unique, but I think Joan was really unique.
(Joan): There is no reason why I can’t be a miracle. There is no reason why what I’m doing cannot cure me. It has cured other people. Why not me?
(Voice of friend): There are times when I felt like Joan was like Joan of Arc. That she was so much like the warrior, like the Amazon warrior. She was so strong and such a fighter and she was so emphatic about doing it her own way.
(Joan): Nice and cold. Freezola. I’m not going to feel a thing.
(Voice of friend): I have really never seen anything like her will and what she was willing to go through too. I think she could have died and gone out more easily two years before she actually died and I think most people would not have come back from that somehow. Joan just fought her way back from that. She just wanted more life and she fought her way back and what she got was an extra two years but a difficult two years. I often used to think that I am not sure I would have made her choice, if it is a choice. That I might have just stopped fighting sooner.
(Joan): How long can I sustain this amount of cancer? I don’t know. Nobody knows…
When someone dies in a calm and loving way who benefits? Do the dying? Do the living?
(Friend): Support groups come in all forms. A special support group, if you will, it was informal but every Friday evening she had drumming and rattling.
(Friend): Right that was towards the end right?
(Friend): Yes, towards the end. She was kind of like, oh I don’t know if I can sit up and talk in support group meeting, but she loved to chant and have drumming, singing, rattling and so whoever showed up we would do that. It was a wonderful support.
(Friend): The last conversation that we had I knew it would be our last. It was that Friday night before she went unconscious. I walked in and she looked at me and she started to cry and she said I am sorry. I said you don’t have to apologize and she said but I wish we could have been old ladies together. It was so great just to acknowledge that, that I said, well, I wish we could have done that too, but you will be with me.
(Joan): I’ve been quiet. I’ve been immobile. Been drugged. Groggy. I don’t want to die depressed. I have a choice here. Yeah, I am sad that I am going to miss people and stuff like that, but there have been a lot of great things happening and that is where I want to keep my focus. I always have hope. There are days when I am sad, when I think about dying, missing my friends and nieces particularly and just miss that I won’t be around when I think I could really be a good help to them and influence and help them get through some of their pubic teenager years.
[Joan on her deathbed talking with a friend alternating with two friends talking about her after Joan’s death…]
(Friend): Do you feel as though you have tied up all the loose ends? Is there anything left?
(Joan): Well, I think there is always something left but I feel like at this point what is going to be resolved will be resolved as much as we can and yes, things could use a few more years but I don’t have that. And so what I have a sense of particularly with my family is that things won’t be totally resolved.
(Friend): She never completed her relationship with her parents. And even when I talked to her about you have to forgive their ignorance because the forgiving is part of the healing that we go through. We talked about her mother and she would still be angry.
(Friend): So that the armoring that she had, so much of the armoring had softened and fallen away but there were still some very rough edges.
And with her sister.
Some real hard places there.
(Joan): But I feel like, that I have softened and that my singing and chanting “we are holy people and we are all one” that that has to be my practice. It doesn’t have to but how can I chant that whole morning or for my morning chant and then ignore it for the rest of the day? I can’t, that’s not who I am. So that has cracked more doors in my family for me to be more receptive to communicating, particularly with my parents and my sister, Val. I don’t know if there’s going to be ... I don’t think there will be complete resolution. There is just too many years of mucka muck. But to leave it like this feels a lot nicer than not talking or, you know what I mean?
(Friends): But I think she softened a very little bit about her mother because when I said to her something about letting her mother come and just say good-by to her, she said well, I think I have waited too long though and I really don’t want to let her see me like this.
So there was that one little bit of compassion that came in towards the very, very end.
She wanted to save her mother seeing her look as bad as she did.
Which I felt was very important for her, very important for her final passing.
(Joan): If I die or something… if you would stay with me and maybe call Blake. I think she knows more who to call. She’ll call Tom and so people will come and pray.
The body dies but is there something that never perishes?
[Joan in coma, hospice nurse and sister talking in kitchen]
(Hospice nurse): Her body is really shutting down. Joan is very actively dying. I would imagine that she would die if not today in the next few days. Making the transition between this world and the next. Time to say our good-byes and send her on her way.
There are so many ways to go.
You need to cry. The more grieving and crying you can do now the easier it is, the less stuck it gets anyway. It is not easy. It is not easy at all. Joan has been such a vital force.
If you are here when she does go you just call us.
Are we going to call the police?
Do not call the police. Do not call 911. Do not call the hospital. Do not call…
No I wouldn’t have called the hospital, I would have called the police, but now I know not to call the police. Call you first.
Yes. Just call us. That is all you need to do is call us and friends, you know, and family– that sort of thing. Just call us.
Right, right, right. Okay.
It doesn’t have to be flashing lights and all the rest. It’s still just peaceful.
And you can have the time that you want to be with her after she goes.
Thank you a lot.
What is being done to prepare for her death by her friends?
(Hospice nurse): I believe they are gathering to come and to try to give support to the family as well and to just be here around the clock so somebody can be with her as she goes on the last leg of her journey. When all of us reach the fullness of our days then we leave. And the fullness of our days may be but an hour or it may be a hundred years. It’s for those of us who remain to make peace with that. It is sad for those who remain. It is sad for those of us who lose who Joan is and everything that she meant in our lives but for Joan herself as she makes the final transition it will be fine.
It snowed last night. It’s really beautiful outside. Here you go. Your mouth is kind of dry. I have a sponge for your tongue.
(Sister talking to Joan): It’s time for you to go on your journey. I love you so much…
(Friend): I’d like to talk to Hospice about how long we could keep her here. I know that for a number of hours it is going to be fine, maybe even overnight or whatever. She had said to me that it is important to in some traditions to not be touched or moved at all for an hour. So at least an hour…
[Music - clarinet and piano]
(Joan’s voice): And it’s my nature. It’s always been my nature – survival. From when I was like two I was dammed if I wasn’t going to survive. I was going to survive come hell or high water.