September 26, 1999 - October 2, 1999

Sunday, September 26 The plan today was to go into Honolulu, have a fabulous brunch at one of the hotels, then go to the airport an hour before our flight home, which would give us plenty of time to check our bags and board in a leisurely way. We've found that people are very understanding if we board in the "people needing special assistance" group. Don says its an opportunity to practice the "hangdog" look, but it also has its practical side: it cuts down on the amount of time he spends standing, which is very wearing on him. Things did not go exactly as planned, a condition I'd come to accept during our stay on the island. Despite yesterday's lengthy negotiations, Diana decided to change the logistics. She wanted to stop in Kailua to pick up some photos she had dropped off earlier in the week, so she drove Jim's car while Jim followed on his motorcycle. Several of the pictures she got were of Don, though most were taken before our arrival. Two of them came out particularly well. There were several beautiful shots of us on the Manoa Cliffs Trail. Don and I enjoyed looking at them while Diana went back into the store to fetch her handbag, which she had left at the counter. Our next stop was supposed to be Diana's office, where Jim was to drop off his motorcycle and join us in the car. Instead, Diana drove us to the Quan Yin temple and pulled over and parked. Stopping at the temple was part of the morning's plan, but it was supposed to come after Jim had dropped of his 'cycle and after we had had brunch. But Diana realized the temple was on the way to her office, so she stopped there first. This confused Jim, who didn't know if we were pulling over for just a moment (perhaps to consult a map) or if we were parking and getting out. He figured it out, though, and soon joined us at the temple entrance. The temple was small but wonderfully decorated and pungent with burning incense. In fact, there was so much burning incense that it made my eyes water. As we entered, I noticed a thin elderly man sitting on the temple steps with a tired, disappointed look on his face, smoking a cigarette. Later, I noticed him going from altar to altar, collecting the half-burned incense sticks until his had both hands full, all the time smoking his cigarette, his face unmoved. There was also a young, muscular man standing outside the temple. He seemed to be chanting. More about him later. Inside, there were three main altars. The one in the center was to Quan Yin himself (or herself, depending on how you choose to imagine it). Quan Yin is the Boddhisattva of Compassion. He achieved enlightenment but decided to forgo entry into nirvana in order to stay on this plane of existence, helping others. I have had a fondness for the Boddhisattva of Compassion ever since first reading about him in a book about Buddhism when I was in high school. He is also a significant religious manifestation for Don. The statue in the temple did not look like the picture I had seen in the book, but had its own quiet power. The central altar devoted to the Boddhisattva was flanked by two smaller ones dedicated to his companions, one representing Justice and the other representing Purity of Faith. Don stayed quite a while at this altar, longer than the quickie tourist stop that seemed to compose most of the temple's traffic. He knelt as he does for meditation and appeared to be deep in concentration. He told me later that he was praying for release from fear. I prayed at the altar of the companion representing Justice. As we left the temple, Jim, Diana, Don and I gathered for an embrace. It was then that the muscular man approached us. "What do you need?" he asked in a heavy accent. "What?" Don said. He hadn't understood him. "What do you need?" he asked again. "Healing," Diana said. The man then led Don through a long series of prayer rituals, going from spot to spot, altar to altar in the temple. At some point, Jim and Diana decided it was beginning to get rather late, so they left to drop off Jim's motocycle as planned. They told me they would be back for us later. I was not altogether comfortable with this sidewalk mystic, so I kept close to Don, usually just behind him and to the left, as the man led him through his paces. Then afterwards the man took an apple from the offering table and we all went outside. He clasped the apple in both hands and hummed a repetative pentatonic tune. The humming went on for at least five minutes. Then he gave the apple to Don and told him to eat it, which he did. I wasn't sure if he was being polite, or felt this was a genuine instance of grace, or was simply following the path of least resistance, as he often does, giving in to the will of others rather than confront them with his own wishes. I was getting hungry. We had left Kailua an hour and a half ago and none of us had had breakfast. The man told us a bit of his story. He had apparently had some family tragedy - the death of a child, I think. He had spent some time homeless, sleeping on the street. There he decided that all his suffering was not in vain if he could use to to help others, which is what he was doing now. We thanked him. Jim and Diana returned, and though the man tried to ignore them and focus on Don, the spell was clearly broken. Don thanked him again. As we left, he told Don he could come back again tomorrow for more healing between ten and eleven AM. He invited me back, too. In the car, Don shared his apple with me, finishing it before we got to the hotel. I was curious about this and asked him later, "What do you do with a sacred apple core?" He replied, "Compost." When we arrived at the hotel, we discovered we had just missed the brunch by ten minutes. All our delays had added up. We were also running out of time before our flight. We ate more hurriedly than I would have liked, then quickly made our way to the airport. We were in plenty of time to board, but we missed the "special assistance" group. The flight back was uneventful, save for a glorious view of the evening rising up through the earth's atmosphere. I had seen something like this before. One magical evening atop Mount Lassen, I watched as the volcano's profile grew eastward and then upward as the sun set. But this evening, the view was not of a mountain shadow at eleven thousand feet, but of an entire planet's shadow seen from 34,000 feet, deepening and fanning out into space. We arrived at SFO on schedule, but had to wait an hour for our luggage to arrive at baggage claim. "I thought since we were so late checking our bags, they would be the first ones off," Don said. We spent another forty-five minutes outside the terminal waiting for a door-to-door shuttle. I was beginning to worry about Don's medication schedule. We had enough Decadron with us for tonight's dose, but hadn't brought any extra Dilantin with us. I was beginning to think of dramatic gestures, such as calling an ambulance or even hailing a taxi. We finally got a shuttle about 10:45 PM and the driver made record time to Mountain View, zipping from SFO to Palo Alto in just over fifteen minutes. We arrived home exhausted not so much by the trip as by its aftermath. It's sad how quickly an airport can suck a vacation right out of you. As we fell asleep, I deeply regretted that Don would have no time to prepare emotionally or spiritually for tomorrow's crucial MRI. I felt I had somehow failed him but was too exhausted to hold onto the feeling.	At the Quan Yin Temple
Monday, September 27 Don went in for his first follow-up MRI this morning. We arrived at UCSF in good time, and this time they used the machine in the "mobile facility." Unlike the Varian mobile unit we saw tooling around the streets of Palo Alto a month ago, I don't think this unit ever actually moves. I stayed with Don the entire time he was in the machine, squeezing his hand in a pre-arranged signal when each scan was nearing its end. We then walked across the street to 400 Parnassus, where Dr. Prados's new offices are. He is now on the eighth floor, along with Dr. Berger and Dr. Lowenstein. It makes sense for them all to be on the same floor, and the views from up there are spectacular. It was quite a while after our appointment time before we were called into an examining room. Dr. Prados's research fellow, Dr. McNeil, saw us. She is an enegetic, amusing, slight woman with dark hair and showing the beginnings of a pregnancy. She had a directness and energy that I associate with the East Coast, and indeed, that is where she is from. She summarized the results of the scan: The tumor has not grown, but it has not shrunk, either. The area of white around the resection is not smaller than it was in the MRI immediately after surgery. But at this point, that might be swelling, not tumor. Only from later tests will we be able to say that this was swelling, or this was dead tumor, or this was living tumor. The reason they delayed so long before calling us into the examining room was because of what Dr. McNeil called a "ditzel" on the section that showed Don's midbrain. Neither she nor Dr. Prados knew what it was, and they didn't want to speak to us until they had found out. They examined his MRIs from just after the surgery and found the same "ditzel" there, in the same location and the same size. Since different machines had been used to take the images, it couldn't be an artifact. What could it be? They still didn't know. It could be blood, metal, or fatty tissue. They would have to find out from the radiologist. The most probably next course of action is to resume the Thalidomide or some other of what McNeil called "little guy" chemotherapy. There was no indication that Don needed any of the "big guy" drugs, like Temozolomide or BCNU. During the usual round of "wiggle-finger" and "macarena" tests, she noticed a tremor in Don's right hand. I had seen this recently, too, but had made no conscious note of it. She looked in Don's right ear, which has been discharging fluid, and believed she saw pus behind the eardrum. However, this would not explain the drainage from the ear canal, since there is no way for it to get out from behind the eardrum. It needs to be looked into further, possibly by an ENT specialist. I was beginning to pick up from the animated way that McNeil spoke and the language she used that she was used to treating children. It wasn't belittling or partronizing in any way, though. It was actually kind of fun to watch. She was delighted by Don's squeezable brain. She said she used to use all kinds of inticements with her pediatric patients, but once she found the squeezable brains, they wouldn't accept anything else. McNeil was so fascinated with Don and his story that she extended her interview with us longer than planned. Consequently, Dr. Prados was already with another patient when she finished, so we had to wait a bit longer before he could see us. When he did arrive, he was his usual direct, business-like self. He, too, summarized the MRIs for us. Prados: The surgical cavity looks smaller, there's less surgical swelling, and the surgery and radiation have controlled the tumor. Did Thalidomide help? We don't know. In the lab, angiogenesis inhibitors have worked on tumors. D: Are there others? P: Yes. SU-4516 is about to go to Phase I trials. That will be for tumors that have recurred and are growing again. Then we'll be looking at SU-6663. So there's a whole series of new treatments in theory. But in humans... (shrugs). D: If you think Thalidomide would be helpful, I would entertain going back on it. P: The dose-limiting factors are neuropathy and constipation. Typically, the neuropathy shows up on the tips of the fingers and toes, but we've had a few cases where it showed up on the arms or thighs. The side-effects of Thalidomide are reversible, once it's stopped. That sounds like what happened to you. D: Yes. That's why I'm interested in going back on. P: Then we should do the same sequence: 200 mg a day to start, then 300, then perhaps 350 rather than 400. Presumably, folks who get Thalidomide who are not being irradiated, their bodies adjust to it and side effects become a non-issue. D: Fatigue was definitely an issue. I would not want to do that again. I found that if I kept moving, I could keep going. But once I stopped, the body felt heavy. I needed to lie down. I couldn't sleep, but I didn't want to move, either. P: When did you finish radiation? D: A week ago - on Friday. Lou: On September 10. P: Some of the effects should be waning. D: Yes they are, definitely. P: Then let's do that, go back on the Thalidomide. D: What's in the inventory of treatment? P: (chuckles) Inventory. Makes me feel like a warehouse. D: (laughs) I feel like a chemical laboratory. P: Temozolomide is commercially available for grade 3 anaplastic astrocytoma. I'm not sure how the insurance companies will take to using it against grade 4. [Grade 4 anaplastic astrocytoma is another name for glioblastoma multiforme.] It would be an off-label use. We can't do the surgical implantation therapies with you because your site is right next to the lateral ventrical. Any implants or chemo would just wash away. D: What looks promising? P: Thalidomide and Temozolomide with radiation. The most powerful treatment we have right now is radiation using implants and gamma knife. However, your surgical cavity and its location rule those out right now. L: Are there other problems with radiation, such as necrosis? P: Yes, and the pressure effects due to swelling. I would love to do this without radiation therapy, but right now, it's the most effective. D: What do you think about retinoic acid in my situation? P: I know cis-retinoic acid causes neurologic toxicity. We're going to try it with Thalidomide, but can we find a combination that doesn't damage the nerves? We haven't found out. They had to close the retinoic acid studies because there was an increase in cancers in the study group - the very opposite of what we expected. Sometimes, putting it all together in a caldron and putting it into your body isn't a good idea. I have never done retinoic acid with Thalidomide, so I don't know what it would do. D: Is 400 mg. [of Thalidomide] a moderate dose? P: Yes. The goal is 1200 mg., though that's an arbitrary goal. If you tolerate 400, we should go higher. You'll need a new prescription. D: That stuff is expensive. P: No, it isn't. It costs about 10 cents a pill. But here, it's $50 a pill. In South America, it's practically an over-the-counter drug. I get very upset about this. It's just profit, not recouping losses from lawsuits. (Regains composure) So, we need to schedule another scan in eight weeks. D: If you think Thalidomide is the plan for now, I'm for it. P: Yes. And we need someone to look at your ear. Because we had the prescription filled before leaving for Hawaii, we had enough Thalidomide for Don to start taking it at once. So he started again this evening at 200 mg. I was working at my computer, trying to get a site plan ready for the fence replacement, when Don took his medication. I'll need a site plan before I get the city permit. I was up maybe an hour after Don took his medication. When I got back to the bedroom, the bedside lamp was still on, but Don was fast asleep. I nudged him a little, hoping he might be roused, but he continued snoring softly. I called his name, softly, then in a normal speaking voice. But there was still no response. We had had so little time together, so little time before the drugs took him again. Between the hemorrhage and the tumor, there had been only one week when he was off Dilantin. There had been only a few days, the last three we spent in Hawaii, when he had shaken off the fatigue from radiation and wasn't under the thrall of Thalidomide. But even then, we hadn't been alone. Now we were home alone, in our own bedroom, and we might have some time together, quality time. But he was gone. The sedative had taken him. I curled up beside him on the bed and cried.
Tuesday, September 28 Don called Dr. Hancock's office to tell them about the ear problem. He found out that Dr. Hancock was on vacation, so he left a message for Dr. Mehta to call him. He didn't explain the problem; he just asked that he be called back. That was in the morning. Then he left for Marin, where he was going to see an "energy healer." He was also planning on staying in Oakland that evening so he could go in to work the next day. But he decided not to stay in Oakland after all. He called from a bus in Marin to say he was far too exhausted to go in to work and was coming home. Although I was sorry he was so tired, I was very glad he would be back home tonight. Although I would not see him until I got back from rehearsal at 11:00 PM, I felt better about him being here rather than up in Oakland, even if he was sound asleep by the time I got home. But he was wide awake when I walked in. He told me something disturbing had happened while he was waiting for the bus. Flies had started buzzing around his ear, apparently attracted to the scent of his discharge. I resolved to get him to an ENT doctor tomorrow and said I would see if my primary care physician at the Palo Alto Medical Foundation would recommend one. He hugged me and said it was so good to be home with me. I said, "Do you know what I remember most of our trip to Hawaii? The night we took a moonlit stroll on the beach. That was perfect." "You're such a romantic," he said, "I love that." "You bring out the best in me." "There's a lot there to bring out," he said.
Wednesday, September 29 I called PAMF and, after negotiating one operator and two voice mail tapes, finally got a receptionist who said a nurse would call back in an hour. An hour and a half later, a nurse did call back. Don took the call. He described his symptoms. When he mentioned that he was being treated for cancer at Stanford, the nurse seemed to lose her nerve. She said it was best if the Stanford doctors recommended an ENT for him. He told her that his radiation oncologist, Dr. Hancock, was on vacation, and that Hancock's fellow, Dr. Mehta, had not returned his call. (Dr. Mehta has quite a history of not returning our calls.) The nurse said she would ask the on-call doctor what to do, but that she was uncomfortable with him seeking treatment through PAMF rather than Stanford, which knew more about his case. Don was about to end the call when I reminded him that he needed to seek treatment today. He told the nurse this; I hope it made an impression. After he hung up, I said, "You know, when Diana read your Tarot in Hawaii, she said that the main obstacle to your healing was Silence." "Diana said she thought it had something to do with Silence in the larger sense." "That was after you said you couldn't think of anything immediate. I could." "What?" "I don't think you speak up enough when it comes to your own health care." "Oh." "I want you to treat yourself as well as you treat others, as well as I treat you. Don't go short-changing my sweetie or I'll come after you." He smiled and said he would try to be more vocal about his needs.
Thursday, September 30 I took Don to a 9:30 appointment at the California Ear Institute next to Stanford Hospital this morning. There was a delay before they could see us (of course), but we were eventually examined by a nurse, and then by Dr. Dear. Dr. Dear said that ear canal irritation is common in about 80-90% of cases with high dose radiation. In about 40% of those cases, a ventilation tube is inserted into the eardrum to drain the inner ear. Don said, "I don't like the sound of that." The doctor did a quick hearing test and examined Don's throat. "So," he said, "what's bothering you most is the drainage and tinnitis." Don confirmed this. Dr. Dear then cleaned Don's ear canal with a small suction device, a sensation that Don described as weird boardering on disturbing. Afterwards, the doctor asked, "Have you had problems with this ear before?" Don said, "I had childhood earaches. Where is the fluid coming from?" "It's the same as a burn anywhere else on your body. The skin is weeping." "Is the fluid in front of the eardrum?" "That's what I'm trying to tell," Dr. Dear said. "The whole eardrum is red. I don't see a hole in the eardrum, but it's swollen, thickened, and reddened. At this point, it doesn't look like there's an infection." He went on to express some surprise that no one had done a hearing test on him yet. He said it would be an important benchmark to determine if there were any hearing loss during the course of Don's treatment. He told us how to use the eardrops he was prescribing, and Don made an appointment to see him again in a week. My psychotherapy session was next, then lunch at The Good Earth. Afterwards, we said good-bye to each other on University Avenue. Don headed for the train depot and a trip to The City, I wandered down the street on my way back to the car. Unfortunately, Restoration Hardware lay along my path, and I succumbed. I bought a lap desk for Don, a doormat for the front door, and noticed that their lamps were going on sale in October. Tomorrow. Tomorrow was going to be October. I had them set aside one of the lamps I'd been lusting over for months. I was up late again that night, finishing the site plan for the fence. Don is asleep when I come to bed, so I don't show him the lap desk.
Friday, October 1 As I get ready for work this morning, I keep trying to present the lap desk to Don, but each time I enter the bedroom, he's on the phone with someone. The first time, I think it's Devatorah. Then it's Shankari. I try to delay my departure until he's off the phone, so I go outside and double-check the fence offsets. When I go back in, he's talking to Devatorah again. I wait by the bed. He gets off the phone and says that Devatorah is starting one of her distance healing sessions with him now and she wants him to concentrate on a certain visualization. I decide this is not the time to distract him with presents. I kiss him on the forehead and leave. At work, I notice Don is beginning to get e-mail at my Best.com account, so I lump it all together into one file, trim the headers, and print it out for him. I take it with me to meet him that evening. We had decided to see North by Northwest that night at the Stanford. I had never seen the beginning of the movie and it was, after all, a classic. We meet under the marquee. Don has bought the tickets already, so we go to dinner at Zao. I give him the printouts of his e-mail, which he adds to the other things he's carrying, which includes a San Francisco Examiner. Neither of us can finish the generous soup portions at Zao, so we have them package up Don's in a to-go carton, and add that to the stuff we have to carry. Since we still have time before the movie, I decide we should go down to Restoration Hardware and pick up my lamp. Then we can deposit all the stuff we're carrying in the car. Don says he also wants to shop for a juicer, and I know of a kitchen store that's just a few blocks down the street from Restoration. So we head for Restoration, only modestly encumbered by a backpack, satchel, newpaper, loose e-mail, and leftover soup. Restoration Hardware is busier than I expect and I have to wait some time standing at the counter for a sales clerk. While waiting, Don asks if they have juicers. They do, but they are not the kind Don is interested in. He waits with me for a while, then he asks me to tell him where the kitchen store is so he can go looking there while I get the lamp. I don't like this. Why can't he wait for me to go with him? I could use his help carrying the lamp. Why does he want to go off on his own? Is this boring him? "Do you find my company so offensive that you can't wait to be out of it?" I ask. I mean to be self-mocking, but the tone comes out as cutting. He immediately looks crushed. I can tell I've really hurt his feelings and I apologize. He seems unrelieved by the apology. Then I think I really am a clod. He has said many times that just standing is very hard for him. Of course, walking to the store would be easier than just waiting here by the counter. But I don't want to give him directions because I'm afraid he'll get lost, and I don't want to tell him this because I'm afraid it would wound his pride. I point out a chair and a sofa where he could sit down, but he says he's not interested. I silently accuse myself of treating him like a dray animal. Worse, perhaps I just want him somewhere I can see him so I can control him. No matter what I do or say, Don looks dejected. The lamp arrives and it is in a much larger box than I can carry if I carry any of the other stuff we've brought with us. We shift the burdens around so Don is carrying all the loose stuff and I'm grappling with the box, and then we head for the car. On the way to the car, Don says what's really bothering him. He says how sorry he was about this morning. He says he knew Devatorah was going to call him, but he forgot about it. He feels he shut me out and insulted me by putting the visualization ahead of giving me a proper good-bye. He even went so far as to stop by Glyphic World Headquarters to apologize this afternoon, but we were all out to lunch. So when, in my impatience, I said, "do I disgust you?" he thought I might actually mean it and be genuinely angry with him. "No," I said, "I was just exaggerating. I wasn't really angry. It comes and goes in a flash. I couldn't stay angry with you for long, anyway." We arrived at the car and unburdoned ourselves. Then we hugged for a while. Then we went to the kitchen store. They had a juicer, but it cost $350. We said no thank-you. The movie was wonderful, despite the fact that a rather strange man sat beside us. When other people laughed or applauded at a particularly Hitchcockesque bit of dialog or cinema technique, he would laugh and clap, too. But he would do it two or three seconds after everyone else. It was as if he didn't really get the joke, but knew from the way everyone else reacted that he should have and was trying to catch up.
Saturday, October 2 We got off to a slow by sexy start. Having to lean over Don to put the eardrops in his ear puts me in a remarkably convenient position. We finally solved the juicer equation at Macy's. And it was on sale, too! On our way to the shopping mall, we talked about last night. "You say your anger passes quickly," Don said. "That worries me. It means you may have been angry with me and I never knew it." "It comes and goes in a flash," I repeated. "But if I don't catch it, how can I ever change the thing that makes you angry?" "My anger usually doesn't come from something you do," I said. "It has its roots more in my childhood than in your behavior. I pretty quickly see that it's not you, but something from childhood I'm reacting to. Once I see that, the anger passes. It's one of the chief lessons of therapy: being able to tell the present from the past." "It's a very important lesson," Don said. After our shopping triumph at Macy's, we stopped at one of the courtyards in the mall and had a snack. "The book by Targ I ordered has come in," Don said. "It may not be as wonderful as I rmember it, but he has this notion of reality as being merely a social construct that I found very appealing." "That's an idea that appeals to me, too," I said. "Maybe it appeals to me simply because I was taking LSD at the time," he joked. "Maybe I like Targ because he gave an academic blessing to an idea I was already entertaining." "It's an idea that shows up in Humberto Maturana's work, too. I was reading his stuff two summers ago - well, trying to read it, at any rate. He's pretty impenetrable. But he said the only difference between halluciantion and reality is social convention. A hallucinating person can't tell that he's hallucinating unless what he sees is not supported by others - and he thinks they're not hallucinating." "That's part of what worries me about my visual perception. How do I know that something isn't there if I don't know it's there in the first place?" "Exactly. Maturana said the individual can't tell if he's hallucinating; only his culture can." "It goes the other way, too. Like when I felt the presence of someone on my left, even though I knew, through other senses and reasoning, that there couldn't really be anyone there. Was that a hallucination? And what if my other senses or my reasoning only confirmed the hallucination? How much of what is there - of what I think is there - is really there?" "We're probably hallucinating all the time, even now. But it's an illusion that's supported by society and honed by hundreds of millions of years of evolution. That was kind of my point in that poem." "I found Targ's expression of this idea appealing because it resonated with my own experiences back then. Here was a Harvard doc with the same ideas I had." "Yeah, I have the same fondness for Maturana. He was saying the same things I was thinking, so of course he must be right. Plus he backs up my preconceptions by putting them in print. Now there's a truly collaborative illusion. We were creating a mutual reality across time and space because we happened to believe the same thing." "Now I wish you had been with me during my session with Freinkel. He says reality is built on relationships, that our sense of self is relational." "He sees the self as a nexus of relationships?" "Yes." "This seems a logical step to me. If, as Maturena says, the organism is constantly remaking itself biochemically - atom by atom exchanging with its environment - then the same is true of meaning and reality. Those, too, are a mutual construction, an exchange between the organism and its environment, except now the organism is a human being and the environment is society, and it's not atoms we're exchanging, but ideas and words. From there, it's a short step to realize the self must also be the result of a mutual exchange with the people around you. I think that is what Maturana was getting at. The boundary between the organism and the environment is fluid, not fundamental. The boundary between hallucination and reality is negotiated, not fixed. And the boundary between self and other is transluscent, artificial. The self is not here - or, rather, it is not just here. It's all spread out." "The distributed self." "Yes." "But that's so contrary to what we believe." "It's contrary to Western concepts of individualism." "It's certainly contrary to what I believed. I wanted very much to be an individual. I worked hard at it." "I remember working hard at it, too. I thought, in my late twenties, I don't want to be my family. I don't want to be crazy, like my mother, financially irresponsible, like my sister Remy, or settled into a life of crushed expectations, like my sister Kris. But in the past ten years, I realized I am my family." He laughed. "I've realized it to. I'm my family, too." "From what I've seen," I told him, "you're the most successful." He shook his head. "I'm the most highly functional. But I'm still my family. This sense of accomplishment, of having built myself up by myself, that comes from my family somehow. And it was so hard to realize that it wasn't, really. That my self wasn't under my control. That's what made my treatment at Kentfield and by my friends so disturbing. They weren't treating me like me anymore. They were constructing a self around what the doctors had told them about my deficits." "They were constructing a self, but it wasn't consensual. You didn't get to participate in it." "It also brought home how fragile this carefully constructed thing called 'me' was. It could all be taken away. And I had worked so hard on it. I was very proud of my intellect, of where it had gotten me and what I could do with it. And it all could be taken away." "There was also some anger because you weren't given the chance to consent. The stroke didn't ask you if it could wipe out part of your memory and part of your body. And the doctors didn't ask afterwards." "Exactly. All these people were pushing a definition of me I didn't like or want. I wasn't allowed to participate." "I think maybe the roots of adolescent rebellion come much the same thing. The moment the kid realizes, 'Hey, it doesn't have to be what other people are pushing on me. I can push back. I can shape myself, too.' For years, parents, society, school pushes a definition on a kid. Once he realizes he can push back, it's all over." "I realized early on that I wasn't the self others wanted me to be or thought I was." "But you had a big advantage: you were queer. You knew a big portion of what society was pushing your way was bogus, a bad fit. You knew early on that you'd have to come up with something else, and there was nowhere else to get it from than your inner sense of self." "You helped me regain that inner sense of self after the blow-out. That's how you were different. You let me participate." "I had to. You wouldn't be who you are if you hadn't participated in the construction of your self. You're not just a snowflake in the wind. You're a snowflake with attitude jets." That night, snuggled up together after administering the ear drops, Don tells me, "When your hand was on my head, I felt this warmth flowing from it to me. This is always how I've imagined the hands of a healer felt. I've said it before and it's still true: your love is healing me."