|The strongest love is the love that can demonstrate its fragility. --Paulo Coelho|
A Story of Grace and Grit--by Richard Whittaker, syndicated from conversations.org, Dec 31, 2013
I was intrigued when at a ServiceSpace gathering one evening when Pavi Mehta took me aside and told me about a woman she’d met, Grace Dammann. Pavi is one of those people I listen to very carefully. I should meet Grace, she told me. Her spirit is remarkable. The arc of her life has had her play many roles. She been a physician to AIDS patients, a dedicated Zen practitioner, a parent, a partner, a recipient of the Dalai Lama's Compassionate Spirit award, and a patient who spent 48 days in a coma after a devastating accident—the results of which she continues to negotiate in daily ways. As Pavi said, “It’s impossible not to be amazed and inspired by her spirit and story.”
Pavi proposed that a small group of friends would gather with Grace at her living quarters at the San Francisco Zen Center’s Green Gulch Farm in Marin County. I would interview Grace and there could be an exchange afterwards. Of course, I accepted the proposal, not knowing when, or whether, this would really come to pass. But it did some weeks later—and in auspicious fashion. Besides Pavi herself, guests included cardiologist Richard Lueker and his wife Meg, in town from Albuquerque, New Mexico. I brought Ayurvedic doctor, Eduardo Cardona San Clemente along, who happened to be visiting from London. Sam Bower of greenmuseum.org and Pancho Ramos Stierle of Casa de Paz were there along with ServiceSpace stalwarts Anne Veh and Audrey Lin and Grace’s yoga teacher, Suzy. We were also joined by a four-footed sentient being, retired service dog and love machine, Mac. In the words of Pancho, “It was quite a group of love warriors.”
This was my first meeting with Grace and whatever concerns I’d had about my role evaporated immediately almost the moment I met Grace. In the palpable warmth generated by Dr. Dammann and this group of compassionate friends, I found myself deeply at ease.
[an edited version of this interview appeared in Parabola magazine in their Winter 2013 issue]
Richard Whittaker: I feel lucky to be here today and my job is to have a little conversation with you. Pavi [Pavithra Mehta] told me a little about you and so I know there’s a “before” and “after” the auto crash. So I would like to ask you a little bit about your life before that, about your work with AIDS patients. That must have been an incredible thing—working with those early AIDS patients.
Grace Dammann: It was great. It’s still great, still a big part of my heart. But I happened to go to medical school really late in life. I was 35 when I started medical school. I’d come to the point of really asking what am I meant to do?
I asked someone who was really special to me, "How do you decide what you're supposed to do?" And she said, “Just get up one morning and ask your heart.” The very next morning I got up and asked my heart. It said, "You should go to medical school."
I said, "You've got to be kidding!"
I didn't love science at all. I didn't have a straight A average. I'm a party girl. I love to have a good time. Anyway, I listened to the voice and so I got on the phone and figured out where I could do pre-med, which was at Mills College. And all of a sudden doors opened everywhere! This included my maternal grandmother who'd been a doctor who I’d never met. This is who I was named after. Unfortunately, she committed suicide after the death of her fourth child. She had been the world expert on infant mortality. And obviously she had postpartum depression. She jumped out of a hospital window, and that was that. So of course, I'd never heard about her. She came to me in a dream and said, "I'll help you."
Grace: And I said, "That's great!" [Laughter] Then I will do this. And all of a sudden the doors opened everywhere. They shouldn't necessarily have opened, you know, because it was a bad time to be older and to be a woman trying to get into medicine. It was just before the wave of feminism hit. So that's a long introduction about how I decided to take care of HIV patients. I was in training at San Francisco General, which was the world center of the HIV epidemic, in terms of the United States in 1983.
RW: Right, Right.
Grace: So most of the patients I got were HIV infected. For example one day I ran the Bay to Breakers race. I had no business running it, because I had not trained a minute for it and I'd been on call the night before. So I got up and went to the starting line where I started to cry. I knew I was never going to be able to finish it, but on Cardiac Hill, some really sweet guy was running beside me. He said, “Just keep it up. I'll pace you. Just run with me.” And we ran, together. And damned if I didn't finish the race!
I was an intern at that point, and he ended up on my service what seems like two weeks later. He was admitted to the hospital, and moved almost immediately to the ICU. He died several days later. That was what it was like in those days. People came in and they died. He'd run a race only a few weeks before.
RW: Oh, my gosh.
Grace: So I come from a long line of doctors. I mean, I'm the 8th generation, skipping one generation. They were horse and buggy doctors mostly, but my uncle was a pediatric cardiologist. He said, “Of course you're going to be involved in AIDS. It is the 20th century disease.” Then, you know, my heart just—it filled up my heart.
RW: Back then nothing much was known about AIDS, right?
Grace: And we didn't know how to treat it. I set up a step-down unit from San Francisco General for everybody who didn't have any family to take care of them. We would admit 30 people a month, and 30 people a month would die. We didn't have any idea about which 30 were going to die and who was going to get discharged. It wasn't the same 30. But after signing, I think, about 1200 death certificates I couldn't do it anymore.
But that was just at the beginning. It’s seemingly different in the US now. Now it's called a “chronic disease.” That's not true across the world. In Washington DC 7% of all African American men are HIV infected. That's higher than the rate for the Congo and Nigeria. A prevalence rate of 1%, or more, is considered an epidemic by the World Health Organization. So it's still an epidemic disease in parts of the US, and in all practical ways it’s a chronic disease that continues to highlight the economic and racial disparities in our health care system.
RW: That’s a terrible statistic. Now I've had a few experiences in a hospital that made a very deep impression on me. I wonder what you think about this: in a hospital you have life and death happening—and certainly what you're describing is a lot of death—and there's an amazing energy there.
Grace: Yes, that's it exactly. All of us were loving what we were doing. We felt totally connected. I'm running a pain clinic now and it's the same thing. We love it. We are just having the best time. There's something beyond the job that calls everybody to be there. Everybody. It's like glue. It's like a wonderful, wonderful glue. We started every day on our HIV unit meditating, as we just did [before starting the interview]. We start every day in the pain clinic meditating. We meditate about the patients who are coming in; we meditate with the patients and half of the staff ends up saying, I can't believe this is a job that I'm getting paid for!
RW: And you did that for roughly how many years before you had this terrible accident?
Grace: Well, I was still an AIDS physician in Marin County on the day of my accident. So I just stopped after the accident. I don't have the capacity anymore to do that level of clinical medicine, meaning for example I couldn't be on call at night.
RW: So you had this terrible accident and so one thing that happened is that you became a patient. Would you talk a little about what you learned through being a patient?
Grace: Sure. But it took me awhile to realize I wasn't a doctor. For example, shortly after I woke up there was a Code Blue call. I said to the nurse, “You've got to call the operator! It's an emergency!” She said, “Dr. Damman, you're a patient.” It took me years to realize that I was a patient and not a doctor.
RW: That must have been very difficult.
Grace: Well it was more like funny. (Laughter) I couldn't move anything. So how did I think I was going to go to a Code Blue? My mind hadn't adapted. No part of me thought that I was disabled. Actually there was a code in my room that I helped run, but I couldn’t move anything. What I mean is my roommate arrested, and the physician and code team arrived. I knew from watching a code the day before they didn’t have an appropriate sized tube for my roommate on the intubation tray. I said: “You're going to want to intubate, but don't get near the airway! You haven’t got an appropriate tube available. Just bag her until the ambulance arrives.”
He thanked me so much at the end. You know, I've played both sides of that. And when I was in Ralph K. Davies in rehab I'd always say to them, “Please involve me in the cases so that I can be of service.”
RW: Going through that terrible crash and being in extremis for a long time, are there things that you would find worth sharing?
Grace: Well I don't remember anything from the accident, until I woke up. Then I remembered everything. I said to the medics and paramedics, “Don't let me pass out until I get to the emergency room.” And I could give the Social Security number of my daughter, and also all of her grandparents' telephone numbers.
RW: This was on the way to hospital after the accident? After you'd been pulled out of the car?
Grace: On the way, right. When I was in the helicopter I could give all of that information. I don't have any memory of this, but when I got to the ER I was still answering questions. They gave me a Glasgow Coma score of 15. That's perfect. Before I promptly passed out. Meaning I could answer all the questions. I was oriented times three. And my blood pressure was 60 over palp.
RW: Oh, my gosh.
Grace: So I was really very close to death. I got 48 units of blood before they finished with me in the OR. They intubated me right away. Then I went into a coma and I feel like that was a good thing to do. I feel like I took care of my own body. I think the fact that I don't remember anything about the coma is fine. At points I've wanted maybe to get EMDR so I could remember, but I'm not sure it would serve anything.
RW: I think I heard or read somewhere that you said your Buddhist practice helped you in this. Would you comment on that?
Grace: When I came to consciousness, I came fully to consciousness, you know. I started singing and I could remember everything. I immediately remembered that when I was in pain, I said, “No don't worry about the pain medicine. This will pass.” I just knew this from my meditation experience.
Zen is kind of formal. During certain periods we sit for 15 hours a day, 7 days a week. It's called sesshin. We eat meals at the same seat. Some people even sleep in their same seat. So we're there in the exact same place in the universe hour after hour. But inside everything's changing. You know, you're in excruciating agony because your knees hurt. Then the period ends. Then you come back and sit down again and your knees don't hurt at all. What happened to the pain? Where did the pain go? Or you remember a loved one who is dead, and start crying hysterically. Then it just goes. Everything passes quickly.
RW: You knew this.
Grace: This I knew. This I knew. And I was so grateful. Because Zen had taught me everything I needed to know in order to get through this experience. Even when I would get really discouraged—“How am I ever going to practice medicine again?”—I thought, something else will happen—because it always does.
RW: I know a story of a man who had an accident like yours, terrible. He also had quite a Zen practice. After many surgeries, a roshi visited him in the hospital and said, "Lucky man, a crash like that is worth 10,000 sittings." And I wondered what you would say to that. [Laughter]
Grace: You have to have experienced it to know whether it's worth it, whether it's equal to 10,000 sittings. I'm not sure it actually pushed my spiritual practice forward. I would love to be able to say that the crash did that. But I think that the living of it is the important issue. So it's just the everyday living of life. And my life isn't any different than any of your lives are. It takes me longer to do some stuff. I can't do some stuff that I once could do. But that's going to happen to everybody in this room at some point.
So look at that point. And see whether it's worth 10,000 hours on the cushion in terms of how much you've gained, because I'm not sure that you either gain or lose anything by any particular thing that happens in life. It's just you get to live your life, and life changes. I definitely feel that a place in the universe opened up to me that I now know about, and nobody who has not gone through my experience can know about that same space. It's kind of like becoming a parent. Until that baby is born you don’t know what being a parent is. So this happened to me. The earth kind of tilted, and this is the life I lead now.
RW: Yes. Certain kinds of experiences have an effect that can come only through that experience. You can't really share it, I suppose.
Grace: Well, this I can say about it. I know I had already learned what I needed to know in order to survive. And I am so grateful. Because I don't know that many people know that they know what they need to know. And that's what the experience has given me. Does that make sense?
RW: (Laughs) Yes. I’m not sure why I'm bringing this up, but I’m curious what you might think about it. I just read this book by Chögyam Trungpa, Shambhala; do you know that book?
Grace: I read it years ago.
RW: Trungpa says there's a Tibetan word drala, which means something like, a direct perception of something—a chair, a shoe. Our screen of thoughts is always preventing us from this perception —the phrase he used was “the utter reality of something.” Such a moment has a special energy that can even be connected with some kind of God. I'm thinking that the practice of Zen can move one towards moments like that. Does this make sense to you?
Grace: Yes. But Zen would also say that direct impression or experience is no big thing. But that's the way Zen differs from most traditions. We don't glorify that kind of state. But yes, I did have that experience with a shower—my first shower three months after the accident. I know I’ve had the direct experience of a shower, meaning how the water feels on the back of your neck as it trickles down. I just couldn't believe how exquisitely beautiful that shower felt! Every part of it I can remember to this moment with the same awareness and it was just—mundane.
RW: That's totally what I mean. That's perfect. There's something about that and how you can still remember that. To taste that, that's something sacred. I don't know what the language is.
Grace: Yes. I feel very lucky that the earth opened up in that kind of way. That is the silver cloud.
RW: Wow. There are several people here with so many wonderful experiences. Maybe we could just invite some questions? Eduardo [Dr. Cardona-Sanclemente], is it okay if I mention anything about your experience because I just think maybe you'd have something to share. You tell me if you're willing.
Dr. Eduardo Cardona: Only one sentence. I think it's so beautiful to feel that one is not here any more. And to hear that from other people. I think it's such a blessing, it's a label forever. Ever. Ever. Because then, as you said, you value that shower; you value that camera; you value the colors; you value your own breathing. So I really thank you because you brought back lots of blessings, and you know what I'm talking about: the blessing of being here. [to RW] Feel free to say something that you want.
RW: [To Eduardo] Thank you. No, that's fine. [To Grace] What do you do here at the farm?
Grace: What do I do here, meaning the Zen Center?
Grace: I work in the office four half-days a week. I answer the phone. I take reservations. I try to help the anxious spirits when we're signing people up for depression and anxiety workshops, for example. People manifest what they're signing up for, so if they're coming to take a vacation they manifest that kind of energy; if they're coming to do a serious retreat they manifest that kind of energy. So I'm the one who gets to talk to all of those people. I just listen and say, “You'll be fine. Just bring warm socks.” [Laughter]
RW: Sort of a little psychiatric side of your medical work
Grace: Well, that's what medicine is.
RW: Yes, tell us something about healing. I mean, you've been broken and you've gone through a process of healing—so this is a deep, deep subject.
Grace: Well, I've met a few healers in my life and when you meet a true healer I think it's unmistakable. It isn't necessarily any of us here. I mean, I don't look at myself as a healer, but I do know healing when I'm in the presence of it. And it's mysterious, magical, and it's God-given. It's not dependent upon the action of any one person, but it arises from the conglomerative energies. That's my feeling about it. It's a team effort, always. It comes about with great love, and it gives great love. It's all about giving and receiving great love. I think that's all.
RW: Have you explored of any of the traditional medical systems like Ayurveda, for instance? Over millennia people have understood certain things that Western medicine is only just now starting to catch up with.
Grace: I kind of look at my Zen training as my own healer. I mean that's where my medicine is coming from. So I'm studying Zen really intensively right now. I'm studying to be a priest. I don't know whether I'm ever going to be a priest, but that's the area that I’m looking at because this is the area where I've gotten my medicine and my healing. And I would love to talk to Ayurvedic and Tibetan practitioners. Being around the Dalai Lama was exactly that kind of experience, and I had the good fortune to have been around him a couple of times.
RW: He gave you an award I understand
Grace: Yes. And once I was a keynote speaker when he came to give awards. I was sure he was in pulmonary edema because he was panting so intensely. I was going through Code Blue scenarios because I was going to be right next to him and if anything was going to happen, I was going to be ready. And he had the same kind of feeling for me, apparently [laughter].
I'd been in the hospital for eleven straight months and hadn't been outside for more than two hours in all that time. Here I was giving a keynote, a ten-minute address, and I couldn't even think two consecutive thoughts at that point. But I managed to write this thing with much help from my speech therapist and everybody in the rehab team. So they let me out for 8 hours. I went to the Ritz Carlton.
His Holiness was feeling so bad for me, and I was feeling so bad for him, that everybody who was there said the situation just came alive. They could see that he was energyless when he first came, and then he got so inspired by me. And I got so inspired by him! We were just creating a love fest! He was stroking my cheek through the whole talk. And it was a good talk! [laughter].
I can say that it had nothing to do with me, but it had totally to do with the fact that he was always adjusting my microphone and he nuzzled my head and I was nuzzling him; we were just nuzzling each other.
RW: Wow. That brings up, for me, this idea of the visible and the invisible. Do you think there are a lot of invisible things in the world that are important?
RW: And a person might think, well, that's spooky and weird. But the fact is that we live our lives immersed in invisibilities, right? A lot of what was going on between you and the Dalai Lama—you could say it was in the realm of the invisible. I mean it's tremendously important. You want to add to that or say anything about it?
Grace: Sure. Among the things that I did in my previous lives, was that I was a witch at one time. I got witch-training, meaning I was in a coven, and witches believe that everything is in all realms, visible and invisible. Therefore, your intention will manifest threefold over. So what you think and what you feel, you'd better be careful about it because it will come back to you and haunt you three times over.
And I feel that, on the positive side, that's also true. So therefore I believe in the power of prayer, totally. I'm in a prayer group right now with some older women and we gossip mercilessly. We also pray, we really pray, for people. We've got this list of people. We ask if they want our prayers, and we do it with intention and with kindness. And also we have a great time before we get down to praying. So I totally believe in the invisible realm.
Dr. Richard Lueker: You know the concept of the wounded healer—I'm thinking about that so much with you. A while ago I was sitting with cardiac rehab patients. I was going to give a talk about heart disease, but I said, “I've got John here, and he's had a heart attack. Now he is running four miles, three times a week. He's going to give you a little talk and then I'm going to talk.”
So John started talking, and the group just focused on him. He was one of them, a cardiac patient, and I was not. That is such a powerful thing to be a wounded healer. You have incredible power now to heal others that nobody else could do.
Grace: And I definitely felt that from the time I woke up. The day I woke up my daughter, Sabrina, decided that I must write a book. She said, "Mom you've got to become famous! Just start writing a book." And I said, "You've got a grandmother who writes books (her maternal step-grandmother is Isabel Allende). I'm not going to write books." But just then a friend of mine, Helen, decided to take Sabrina to a 4th of July fair—and Sabrina said, "Why don't you make a movie about my mom?" Helen of course, was in a grateful mode (because of my miraculous awakening) and agreed. She said, “Absolutely!” She said, “Will you make the movie with me, Sabrina?" And Sabrina said yes. She was thinking red carpet and the Academy Awards. She had Sally Field playing my part. [Laughter]
RW: That would work! [Laughter]
Grace: It would work. So anyway that was the way the movie began. And when they came in with the cameras while I was taking showers, I thought, “Of course this is what I'm going to do! I'm going to open my life up, including all of what's ugly about it and what's beautiful about it with the idea that maybe this will help somebody else. Maybe it will help doctors treat people better. Maybe it will help patients have more faith. Maybe it will help healthcare providers who've ceased to believe in miracles, believe that miracles are possible.”
So that's why I agreed to this long, arduous process of having a movie made—because it's really invasive, and having them around when I'm having a breakdown is just not fun. But I don't ever try to cut them off, so all of that will end up on film as well as good moments.
Pancho Ramos Stierle: Have you been already filmed?
Grace: Yes. They've done the filming and are doing the editing now. They're trying to come up with an hour-length film.
RW: I wanted to ask you about the idea of the wounded healer, too. You say you recognize something there?
Grace: Yes. I just did a talk last week with Martha Stewart. It was a fundraiser for a private girls school. The talk was done at Oracle. Anyway Martha Stewart, Isabel Allende and I were all on stage. I gave my talk, then they each gave their talk. And as Martha Stewart said, "I've got street cred."
I've got street cred with patients; she's got street cred with criminals because she's spent time in jail. And having street cred is really important. [Laughter] For example, I come to the hospital in my chair and patients love me. They used to love me, anyway. I'm back in the same institution I was in for twenty years before. They want to know how I've done it. They talk to me on the side and ask, “Doc what do you do when you're feeling like this?” You know, they can talk to me.
I ask, “What do you do when you're feeling like this?” One of them is becoming a great artist, for example. So I'm fascinated by how he's managed to do that because he's got some of the same dexterity issues I have. I can't imagine how I can become a great artist, but he's convincing me.
RW: That's great. Were you ever aware of Milton Erickson?
RW: And he was crippled, you know—from polio. He said that gave him a big advantage with patients.
Grace: Oh yes. It does, really. Although I don't know whether it's made a tremendous difference. I think it made a tremendous difference to the staff that I'd come back and this is what I was going to do. I don’t think it made much difference to the patients except when they see that I'm in a wheelchair. Then they see, “Oh, other things are possible!” So for example, four patients that I'm taking care of have decided to get service dogs. So that's been a great boon.
RW: What does a service dog do?
Grace: For example, Sabrina taught Mac [her service dog, a golden lab] how to get help for her if she was down on the farm. She's got cerebral palsy, among other things, and now she uses a wheelchair. When she was little and was down on the farm, Mac could go and get help.
It’s not easy to teach all of the commands that would be required. Mac can pick up anything. He could take my wallet, for example. If I'm out, he can take it off my lap, give it to the cashier. And he can pick up anything I drop. And mostly, they're love machines. That's the real gift of a service dog. But he can turn on the lights, still, and he can push the elevator button when I can't reach it.
Meg Leuker: Talk a little about your yoga practice.
Grace: Well, Susy is my wonderful yoga teacher. It's not so easy for me to get into the asanas, and it definitely wasn't so easy for Susy alone to get me into the asanas. She kept saying we've got to go see Manuso, who is an Iyengar teacher; he's one of the premiere Iyengar teachers, not in India, but in the rest of the world. So Susy picks me up every Tuesday and we go to the Iyengar studio. Manuso has six assistants that he gives to me very generously for each class and they contort my body in the most wonderful ways.
You know, actually, I was standing up straight for one of the first times since the accident and I just started laughing. It was two weeks ago. I was just grinning from ear to ear it felt so great. Somebody was pulling on one thigh and somebody was pulling on another and they had ropes around me everywhere. I kept thinking, if anybody sees this they're going to think that I'm part of an S&M group. And they're all so wonderful. I believe they are getting as much out of it as I am most of the time.
RW: Bringing up yoga it makes me think of the importance of our relationship with the sensation of the body. Do you agree that this is a major…
Grace: I do agree.
RW: And the culture doesn't teach us anything about it.
Grace: Sitting, again. Thank God I’d had a sitting practice before I'd had this accident. Therefore I had a touchstone. I've got parts of my body that are completely numb and I long for that renewed sensation, and it's not going to come in certain places— but it is coming in other places. In my case, I've got a kind of push-pull, internally, about how aware I want to be of my own sensation because that sensation is a lot about discomfort. A lot of what we try and do in the pain clinic is try to increase the use of other sensations like smell and sound—and not touch, not internal proprioception, because those might be an avenue for pain. But we are trying to balance the senses. So it's more complicated than simply having the awareness of sensation.
Susy: And with yoga it's using the breath to bring the mind, to keep the mind focused on the breath to stay out of the pain. Sometimes they can do anesthesia with just the breath for an operation—pretty extraordinary.
Grace: That's also what meditation is. We do a lot of that in the pain clinic. Teaching patients to breathe. And using smell and taste and touch.
RW: What role does that play for you here in this beautiful place?
Grace: I mean look at how beautiful it is! I wake up and think—as my teacher said, you've been trying to be a priest for years, but you've always been too busy to actually do it. He finally said you can't be so busy. I can be busy, but finally you don't have so many options. It’s true that I’ve gotten to be centered in nature much more because I've walked this path for 23 years and therefore I know when every plant blooms in this valley.
I used to walk out of zazen at 6 o’clock in the morning; the world would look totally bright, totally new; then I would forget about it. Now I actually get to roll down to the office. It takes much longer to get to work and I don't have quite the same vividness of first response, but it's more sustained.
Audrey Lin: What brought you here?
Grace: I wandered in here one day and I got so freaked out that I left immediately. I thought everybody was very weird! [Laughter] But then I came back one month later. I was on vacation in medical school so I thought I was only coming for a night and I ended up staying for a month. By that point, I'd been bitten by the bug of Zen. I’m not sure people find Zen. I think Zen finds them. I don't know about other spiritual traditions, but I do feel like I was grabbed and swallowed by the dragon. It's called Green Dragon Temple. I feel like it was kind of choiceless.
RW: What does that mean “swallowed by the dragon”? And why do they call it a dragon? Do you have any idea?
Grace: I have no idea. I think what it’s referring to is this plummeting into the human psyche that sitting is all about. Meaning you just have a chance to look at your own mind; you don't study anything except the contents of your own mind and if you do that long enough you learn the true cause of suffering. You learn the relief of suffering and you learn the medicine for suffering and you become committed to the medicine to relieve suffering. That's what I mean by being swallowed. I don't think it’s choiceful that I'm in the cave of the green dragon. I think that that's what I'm going to teach.
Pavi Mehta: What does studying to become a priest involve?
Grace: Well, it involves doing practice periods; it involves getting the approval of your teacher and the community and the Abbot’s Groups, and it involves doing two practice periods. This is my hang up—two practice periods at Tassajara, which isn't exactly wheelchair accessible. So I can't do my second practice period yet. And also, this is a very formal practice. I love the form of it, and have never seen someone as disabled as I am practice the forms. For example, eating oryoki, which itself is a ritual requiring a great deal of manual dexterity. I don't think they've ever tried to ordain somebody who is as otherly-able-bodied as I am.
No one is saying to me: “We won’t ordain you because you can’t do X.” It’s all going on in my head. So I've got hang ups. I never thought I would get ordained if I couldn't walk—and I'm still thinking that I'm going to walk. So I'm kind of putting off my part of the decision about getting ordained until I start walking. But I'm sewing my robes right now, which is all part of the process. I should be done in about another year. We sew our own robes. I always thought it was 100,000 stitches, but in fact, it is more like ten to twelve thousand stitches.
So that's been really interesting because my hand shakes so much. We've figured out all kinds of ways so I can sew, and I'm actually almost done with the 10,000 stitches. So I feel great! That's a commitment I made to myself when I first became conscious; I said, okay now I'm going to sew an okesa. And my arms were in braces...
RW: That's amazing. That's a tremendous discipline to do something like that.
Grace: You know, it doesn't feel like discipline, because it's been really clear I want to do it. I want to do it! So it's not a discipline. It's just hard. [Laughter]
Pavi: One of the things, just listening to you—the standards that you set for your life and the way you live are, for most of us, they’re hard to fathom. When you were describing yourself earlier you used the phrase “party girl.” Then just that image of you committed to stitching your own robe—those seeds were in you, it sounds like, from the beginning, whether you were serving the AIDs community or whether you were sitting on the cushion or whether you were going through rehab. And where did that come from? That inner fiber that you have?
Grace: I don't know, but I am very grateful. As long as I can remember that’s been part of who I am. And I got a wonderful wonderful education with a wonderful set of parents, so I'm very grateful for that. For example, I went to a Quaker school that really taught me to meditate, to be quiet, and my family was always one of service.
RW: I’m reminded of a question that has slowly opened for me having to do with how much has been given that I automatically give the name of ‘I’ to. Not rightfully. The older I get, the more I feel that so much of what I feel is “me” isn’t really mine the way I assume it is.
Grace: That's exactly the way I feel about all of it. I mean, my family was always about service. The fact that I'm alive was about everybody giving energy—you know doctors not making typical mistakes, the community really loving me for whatever reason. It doesn’t have anything to do with me.
But my body survived and therefore I have an obligation as a result of that to put forth. How can I do that? That's always the question. How? Not why, or what, but how can I do what I need to do? And what is it that's being asked of me?
Susy: Grace, could you talk a little bit about how you overcame the post-traumatic stress and how you got your brain back—because it wasn't quite right at first. How did you work with that after the accident?
Grace: Well I'm still getting my brain back [laughter]. I'm back in neurocognitive rehab, and everybody should get neurocognitive rehab. It's all about Stop. Refresh. Relax. Refocus. How often do we hear that? Stop. Refresh. Relax. Refocus.
So I spend a lot of time in rehab, gratefully. I also play Luminosity games on the computer, and I did the brain rehab program that KQED mentioned—Brain Gym. Any one of those is helpful.
RW: I heard a story recently of a person who had some brain damage and memory loss. He had this moment riding a bus. He was full of joy because he knew it was the right bus and he knew he'd remembered that. Coming back from brain damage do you have any thoughts around that?
Grace: I think I was kind of lucky. You know when I first woke up they gave me all kinds of tests. So I was looking the other day at the results, which aren't so different from what they are today. So however it happened, when I woke up I really woke up. I've still got some cognitive delay, but it's what I had when I first woke up.
Only recently, for example, have I come to realize that I am disabled. My big aha! experience—and when I knew that I was really coming back to my true cognitive self—was when I realized that I should factor in the fact that it takes me twenty minutes to get from point A to point B because I use a chair. I didn't have that self-perception. That's not feeling sorry for myself; that's just dealing with what is. Somehow my cognitive lapse, actually, was so positive. I mean, I had wonderful, wonderful experiences, like the shower, that went on for hours. I spent days in that kind of awareness—two years, probably.
So coming back from that I'm not sure has been so wonderful. I feel like I'm losing that kind of bliss state. But on the other hand, I am more normal. I mean people would come to me because they were expecting to hear the word of a transfigured human being. They would come and see me and I would get really bored with talking about myself. So I would ask them, “How is your relationship? How is your work?” Everybody would talk about all of those things, and if they were not happy in their relationship, I would say, “Just get out. Either get married, or get out. You don't like your job? Stop doing it! Find something you love doing.” So I had a long list of people who would regularly come and sit at the feet of the Brain Damaged One. [laughter].
RW: Truth telling!
Grace: Truth telling.
Dr. Lueker: Would you talk about “stop, refresh, relax, refocus”? That sounds like something we could all use.
Grace: It's actually this program that they are doing with me that was designed for brain-damaged people. It's supposed to increase executive function. That's one of the things that goes promptly with brain damage, our ability to make good decisions that are self-monitoring, that take into account both our gifts and our foibles.
You know how a hyperactive child will often run out into the street without looking both ways? That's the thing we want to avoid. So we're trying to learn techniques to stop doing that. As they age, most people get overwhelmed with multi-tasking—meaning thinking about patient A, trying to remember the labs on patient B, trying to remember to call the doctor for patient C—you know.
So at that point, what you do is you stop. You say, “I'm flooded.” You stop. You breathe. You don't proceed without relaxing first. Then you try to refocus. It's a no-brainer—unless you get lost in your feelings, lost in the anxiety of not being able to do it. Which is what happens to most of us.
Sam Bower: First of all thank you so much for sharing your thoughts and for the chance to be witness to this. I’ve really been struck by what it must have been like for you to have so many patients during the AIDS crisis when it first came out. It seems like at best you could offer them your presence.
Sam: And it struck me that after your accident you had essentially the same type of experience. These were losses and many things you had very little control over. You could just witness them and, with your determination, decide to continue. But there seems to be a parallel for me just in your inability, because of the severity of the accident, to do a whole bunch of things. Yet there is the intensity of the experience at the same time.
Grace: I've never thought about it that way, but that's actually a wonderful analogy. We would always say that it was such great work— even though we couldn’t do anything. We got to just be with people. I mean, we tried to do stuff, definitely we tried; we didn't know who was going to survive and who wasn’t. I just saw one of the people, one of the last patients that I admitted to that ward. He was in end stage and dying when I admitted him thirteen years ago, and now he's vibrant! We just don't know.
Learn more about the film (trailer below) being made about Grace's dramatic life after her accident:
Richard Whittaker is the founding editor of works & conversations, an inspiring collection of in-depth interviews with artists from all walks of life, and West Coast editor of Parabola magazine.
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And in the end, it's not the years in your life that count. It's the life in your years.
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