Yesterday morning on the phone, C. said, “I’m going to Golden Gate Park today. In fact, that’s where I was going to see you.” He also said, “Sometimes my excitement causes me to forget what I have planned. I wish I was a dinosaur or something because then I could plan more than one thing.”
It was a pretty day out. Lesley picked me up a bit before noon and we had breakfast at Sally’s near Potrero Hill. The crown on #18 broke during the meal, but I am not going to hold that against Sally’s. Then we went to the SPCA and looked at puppies and cats, and then she drove us to Rainbow so we could do our weekly marketing. As we were nearing the SPCA, we saw someone crossing the street with a droopy-eared dog and Lesley said, “Would you like that dog? I’ll get him for you.”
Back at home, I put my groceries away—don’t know when I’ll actually cook again—and walked over to see C. Two visitors were there, and then a third arrived. After they were gone, I read C.’s entire book to him, of which he said, “You help me. By reading it aloud, it makes it more solid. Any changes you recommend?”
I asked him, “If something happened to you in the future, how would I go on?”
He answered, “The easiest answer would be that you would reflect. You would have your astuteness, your experience, your curiosity. You would have your interest(s).” (He specified that the “s” should be in parentheses.) He added, “You would have your daring.”
“Thank you. I wrote that down.”
“I may have more answers in the coming days.”
He coughed once and it sounded phlegmy, and he was sniffling a bit. I commented on the latter and he said, “I’ve got some sniffle pipe-us.” He makes me laugh.
A man came in the room and addressed the nurse and C. became surprisingly agitated, even fearful: “What’s that?” I told him it was just a man saying something to someone, but he wasn’t comforted. He’s been largely free of distress and fear so far. I hope he doesn’t become afraid.
Tom and I had scheduled dinner with Chris and Kristin at Café Ethiopia, and while I felt calm as I walked there from the hospital, when I neared the restaurant, I remembered about being there with C. last May, what a great evening that was. When I got to Café Ethiopia, I cried, and walked a bit past it to the Borderlands Café, which is also full of memories of C., and then I walked back to the corner: ditto. This entire neighborhood is etched with memories of him, both good and bad. So I was teary at dinner and of course Chris and Kristin were very nice about it.
Sad evening.
"If stupidity got us into this mess, then why can't it get us out?" —Will Rogers
This blog is HIPAA compliant. Identifying details have been changed.
Monday, February 25, 2013
Sunday, February 24, 2013
The Shortest of Them All
Yesterday morning, I found C. both less and more lucid on the phone. He didn’t seem to recognize my voice and I had to tell him it was me, but then he asked, “Have I told you where I was? I’m in the hospital. I’m in S.F. General.”
“No kidding! What are you doing there?”
“That’s the shortest of them all.”
Then he spoke very flowery and romantic words, which I hope were meant for me, though I can’t be sure. He also said, “You’re a very comforting doctor,” which I think was definitely meant for me.
I told him, “I’m coming to visit later,” and he said, “Well, you know, about that—it’s 9:30 now but I don’t know where I am.” He was quite right about it being 9:30, but he’d already forgotten about being in the hospital.
I took a shower and ate breakfast and then Tom and I went over to C.’s to test the new keys, oil the mailbox lock, get cash from J. for the rent and PG&E, and have J. talk to C.’s brother on the phone. We ran into a neighbor of C.’s, who said that, on fine mornings, he used to go up on the roof and crow like a rooster. Next Tom and his girlfriend, D., and I went to drop off a TV that was sitting on the sidewalk at e-waste and then D. kindly drove me down to my office so I could pick up some things that had been delivered there.
At 3:45, I walked over to SFGH, detouring to El Metate to sit down and have a rice and bean burrito. I really like one of their red salsas, which has a distinctive smoky flavor. I read The New Yorker while I ate it and continued to the hospital. When I went into C.’s room, he was standing, talking to a nurse who was seated at the computer terminal.
I brought along his book, My Heart in the Matter, and read to him from it, which lulled him to sleep—the nurse observed that my presence relaxed him—and I sang him his song “The Otter's Manifesto,” a truly charming work. (“I'm so glad to be an otter and I'm swimmin' cause I've gotter ... ”) He had at least five visitors today. He is not in any pain, but he is surprised every time his eye falls on the I.V. in his arm.
His appetite is pretty much nonexistent, a worry for the nurses. They are wonderful; it’s obvious that several of them are quite enjoying C. His dinner consisted of precisely one small bite of a cracker. He offered me some of his meal in lieu of eating it himself, but I told him I'd had a burrito on my way over. He said wonderingly, “I didn't know you ate burritos. Did we ever go burrito eating?”
“Last week we had burritos together at Papalote.”
“Papalote. Where is that?”
“It's at 24th and Valencia.”
I imagine he has been at that intersection five thousand times in his 30 years of living very nearby, but he replied, “24th and Valencia. I don't know it.”
I have a few photos on my refrigerator of him that I took a month or so after we met. He looks exceedingly happy, smiling hugely at me. I was happy, too. It was a delirious time. That fellow is gone and probably will never be seen again (even if C. is somehow rid of brain cancer). What I’m doing now—the phone calls, the emails, the errands, the financial stuff, the healthcare-related stuff, dealing with various parties of all sorts of temperament and in different states of mental health and with a variety of agendas—I’m doing partly in honor of that fellow who was here but is now gone, who made me fairly miserable quite a number of times, but who also brought a tremendous amount of joy and delight.
Thanks to him, it no longer sounds fun to go out to dinner by myself, to walk around by myself, not to receive a phone call first thing in the morning.
“No kidding! What are you doing there?”
“That’s the shortest of them all.”
Then he spoke very flowery and romantic words, which I hope were meant for me, though I can’t be sure. He also said, “You’re a very comforting doctor,” which I think was definitely meant for me.
I told him, “I’m coming to visit later,” and he said, “Well, you know, about that—it’s 9:30 now but I don’t know where I am.” He was quite right about it being 9:30, but he’d already forgotten about being in the hospital.
I took a shower and ate breakfast and then Tom and I went over to C.’s to test the new keys, oil the mailbox lock, get cash from J. for the rent and PG&E, and have J. talk to C.’s brother on the phone. We ran into a neighbor of C.’s, who said that, on fine mornings, he used to go up on the roof and crow like a rooster. Next Tom and his girlfriend, D., and I went to drop off a TV that was sitting on the sidewalk at e-waste and then D. kindly drove me down to my office so I could pick up some things that had been delivered there.
At 3:45, I walked over to SFGH, detouring to El Metate to sit down and have a rice and bean burrito. I really like one of their red salsas, which has a distinctive smoky flavor. I read The New Yorker while I ate it and continued to the hospital. When I went into C.’s room, he was standing, talking to a nurse who was seated at the computer terminal.
I brought along his book, My Heart in the Matter, and read to him from it, which lulled him to sleep—the nurse observed that my presence relaxed him—and I sang him his song “The Otter's Manifesto,” a truly charming work. (“I'm so glad to be an otter and I'm swimmin' cause I've gotter ... ”) He had at least five visitors today. He is not in any pain, but he is surprised every time his eye falls on the I.V. in his arm.
His appetite is pretty much nonexistent, a worry for the nurses. They are wonderful; it’s obvious that several of them are quite enjoying C. His dinner consisted of precisely one small bite of a cracker. He offered me some of his meal in lieu of eating it himself, but I told him I'd had a burrito on my way over. He said wonderingly, “I didn't know you ate burritos. Did we ever go burrito eating?”
“Last week we had burritos together at Papalote.”
“Papalote. Where is that?”
“It's at 24th and Valencia.”
I imagine he has been at that intersection five thousand times in his 30 years of living very nearby, but he replied, “24th and Valencia. I don't know it.”
I have a few photos on my refrigerator of him that I took a month or so after we met. He looks exceedingly happy, smiling hugely at me. I was happy, too. It was a delirious time. That fellow is gone and probably will never be seen again (even if C. is somehow rid of brain cancer). What I’m doing now—the phone calls, the emails, the errands, the financial stuff, the healthcare-related stuff, dealing with various parties of all sorts of temperament and in different states of mental health and with a variety of agendas—I’m doing partly in honor of that fellow who was here but is now gone, who made me fairly miserable quite a number of times, but who also brought a tremendous amount of joy and delight.
Thanks to him, it no longer sounds fun to go out to dinner by myself, to walk around by myself, not to receive a phone call first thing in the morning.
Saturday, February 23, 2013
Too Little
Yesterday began with an early call from C.’s brother, K., two time zones to the east. It didn’t really matter, because it’s pretty much impossible to stay asleep now for the full nine hours of sleep that would be most ideal, anyway. K. told me they ended up having to biopsy a second site in addition to the one they had planned on, and it took a long time afterward to make sure C. was stable. Biopsy results should be coming in 3-5 days. The biopsy was considered to be neurosurgery.
I was able to meditate for 45 minutes before work. It was nice to sit in the great silence and know it’s the exact same silence C. is held in.
A bit after nine, I called C. and when he heard my voice, he said, “Linda! Que tal?” I said, “Not too much. How are you?” He replied, “I’m too little.” We had a vague chat with half-finished sentences and many silences.
Then there was a frenzy of calls and emails. Lisa C., my excellent friend in Seattle, had offered to set up a Caring Bridge website, and asked for input on some details pertaining to that. She and David have also been very available by phone, checking in with me and always ready to listen if I call them. I’m still working from home. Things have been a bit slow there, thank goodness.
At lunchtime, I did an extremely luxurious thing: I went outside and walked somewhere to do things that for the most part had nothing to do with C. Pink plum or cherry blossoms are everywhere, gorgeous decorations for this terrible time. I went to Noe Valley to drop off a package at the post office, to get C.’s keys copied, to buy salmon at Whole Foods, to exchange shoes at Astrid’s Rabat, to Wayne’s to pick up a couple of work shirts.
After work, I went to see C. and found him asleep. He has a big bandage on the top of his head. One of the certified nursing assistants (CNAs) told me about a 21-year-old down the hall who had been in a coma and never expected to emerge, and how that day, she had walked into his room and he had smiled and greeted her: miracles do happen. Maybe we’ll have one.
While I was still at the hospital, N. stopped by and gave me a really great gift: a beautiful heart-shaped rose quartz (for healing the heart) in a little purple bag. It’s pretty and very pleasing to the touch. What a thoughtful thing. I don’t believe in crystals and such, but this is a really nice object and I appreciate her kind intention and the trouble she took to obtain it and walk it over to me, along with a photo of C. I’d never seen before.
About 6 p.m., I spoke to C. softly and his eyes opened immediately; they had been fluttering a bit and he must have been barely asleep. We had a small bit of somewhat incoherent conversation. I said, “I’ll see you tomorrow” and he said, “Of course.” He’s really already left me in some significant ways. Only one of us knows we’re likely parting for good soon. Only one of us knew it was Friday evening and that we would not be together. Lonely.
I walked home to see how long it would take: 27 minutes. I walked past Esperpento, the last restaurant we dined in together, and We Be Sushi, where the incident occurred that cost me his company for what turned out to be almost his last lucid week. I had picked up a burrito at El Metate and went up to Tom’s place to eat it while he and his girlfriend ate their dinner. D., like Tom, is a special education teacher, so she has an excellent bedside manner. I asked how I can live without C. and she said, not unkindly, “How did you live before you knew him?” That’s true, I did live before C. But it won’t be fun to live without him now! She said I’ll have a different kind of fun and she pointed out that things have already changed from how they were. Indeed.
I didn’t stay much past dinner, though they said a couple of times that I was welcome to. I came home and posted a first entry on Caring Bridge summarizing all that has occurred so far with C.’s health, and I put up some photos. I’ve started to reread Stephen Levine’s Healing Into Life and Death. This is an opportunity for awakening and healing, and for meeting what is with softness and tenderness.
I was able to meditate for 45 minutes before work. It was nice to sit in the great silence and know it’s the exact same silence C. is held in.
A bit after nine, I called C. and when he heard my voice, he said, “Linda! Que tal?” I said, “Not too much. How are you?” He replied, “I’m too little.” We had a vague chat with half-finished sentences and many silences.
Then there was a frenzy of calls and emails. Lisa C., my excellent friend in Seattle, had offered to set up a Caring Bridge website, and asked for input on some details pertaining to that. She and David have also been very available by phone, checking in with me and always ready to listen if I call them. I’m still working from home. Things have been a bit slow there, thank goodness.
At lunchtime, I did an extremely luxurious thing: I went outside and walked somewhere to do things that for the most part had nothing to do with C. Pink plum or cherry blossoms are everywhere, gorgeous decorations for this terrible time. I went to Noe Valley to drop off a package at the post office, to get C.’s keys copied, to buy salmon at Whole Foods, to exchange shoes at Astrid’s Rabat, to Wayne’s to pick up a couple of work shirts.
After work, I went to see C. and found him asleep. He has a big bandage on the top of his head. One of the certified nursing assistants (CNAs) told me about a 21-year-old down the hall who had been in a coma and never expected to emerge, and how that day, she had walked into his room and he had smiled and greeted her: miracles do happen. Maybe we’ll have one.
While I was still at the hospital, N. stopped by and gave me a really great gift: a beautiful heart-shaped rose quartz (for healing the heart) in a little purple bag. It’s pretty and very pleasing to the touch. What a thoughtful thing. I don’t believe in crystals and such, but this is a really nice object and I appreciate her kind intention and the trouble she took to obtain it and walk it over to me, along with a photo of C. I’d never seen before.
About 6 p.m., I spoke to C. softly and his eyes opened immediately; they had been fluttering a bit and he must have been barely asleep. We had a small bit of somewhat incoherent conversation. I said, “I’ll see you tomorrow” and he said, “Of course.” He’s really already left me in some significant ways. Only one of us knows we’re likely parting for good soon. Only one of us knew it was Friday evening and that we would not be together. Lonely.
I walked home to see how long it would take: 27 minutes. I walked past Esperpento, the last restaurant we dined in together, and We Be Sushi, where the incident occurred that cost me his company for what turned out to be almost his last lucid week. I had picked up a burrito at El Metate and went up to Tom’s place to eat it while he and his girlfriend ate their dinner. D., like Tom, is a special education teacher, so she has an excellent bedside manner. I asked how I can live without C. and she said, not unkindly, “How did you live before you knew him?” That’s true, I did live before C. But it won’t be fun to live without him now! She said I’ll have a different kind of fun and she pointed out that things have already changed from how they were. Indeed.
I didn’t stay much past dinner, though they said a couple of times that I was welcome to. I came home and posted a first entry on Caring Bridge summarizing all that has occurred so far with C.’s health, and I put up some photos. I’ve started to reread Stephen Levine’s Healing Into Life and Death. This is an opportunity for awakening and healing, and for meeting what is with softness and tenderness.
Friday, February 22, 2013
Twelve-Hour Biopsy
By the way, the reason I told C. his stuff was in the hotel safe was not because we don’t want him to know where he is. It's been mentioned to him any number of times that he’s in the hospital, which does not appear to concern him and which he forgets immediately, as he does any new information. He did a lot of traveling in his youth and I suspected that “stuff in hotel safe” would be reassuring to him, whereas when someone has said that his stuff is in the hospital locker room, he then simply wants that person to go get it and give it to him so he can leave.
I went to visit C. before work yesterday, to be sure to see him before his biopsy, just in case. He was asleep when I arrived. When someone woke him to take his blood pressure, he asked me, “Oh, how are you?” in a very cordial manner. After they wheeled him off to surgery, I came home.
On Wednesday, I went ahead and called C.’s brother myself. I assumed he would already have heard from the social worker, but he hadn’t. Fortunately, he had heard of me. It’s been more than 20 years since he saw C., but they speak on the phone from time to time. This was the first time I’d ever spoken with him, and of course I had terrible news. K. has a very calm manner and took it in stride. We spoke on the phone several times yesterday, as well, and I speak every day with C.’s good friend Don, who also sees him every day for a bit.
I also spoke with a number of other people regarding C. Communications are a not-insignificant part of this situation.
It had been estimated that the procedure would take about two hours, and then C. would spend maybe two hours in the recovery room, so about 2 p.m., I called the hospital to see if he was back in ward 4D yet, but he wasn’t. I called every hour or so thereafter, and it was not until 9:05 p.m., 12 hours after he’d been taken to surgery, that he was back. I have no idea why it ended up taking so long. The nurses were passing out meds when we spoke and it wasn’t a good time to pester them, so I decided to let it be until today.
Each night as I lie down to sleep now, I tell fear that it is welcome to visit, along with its friends anxiety, panic and terror, and so far only the mildest form of fear has arisen, easily met and experienced, so it has not been a problem. I’m glad I’ve had so much practice dealing with nighttime fear and don’t mind (too much) if it arises. I suspect that the experience of watching an entire person slip toward the abyss could easily produce a difficult amount of fear and anxiety.
I went to visit C. before work yesterday, to be sure to see him before his biopsy, just in case. He was asleep when I arrived. When someone woke him to take his blood pressure, he asked me, “Oh, how are you?” in a very cordial manner. After they wheeled him off to surgery, I came home.
On Wednesday, I went ahead and called C.’s brother myself. I assumed he would already have heard from the social worker, but he hadn’t. Fortunately, he had heard of me. It’s been more than 20 years since he saw C., but they speak on the phone from time to time. This was the first time I’d ever spoken with him, and of course I had terrible news. K. has a very calm manner and took it in stride. We spoke on the phone several times yesterday, as well, and I speak every day with C.’s good friend Don, who also sees him every day for a bit.
I also spoke with a number of other people regarding C. Communications are a not-insignificant part of this situation.
It had been estimated that the procedure would take about two hours, and then C. would spend maybe two hours in the recovery room, so about 2 p.m., I called the hospital to see if he was back in ward 4D yet, but he wasn’t. I called every hour or so thereafter, and it was not until 9:05 p.m., 12 hours after he’d been taken to surgery, that he was back. I have no idea why it ended up taking so long. The nurses were passing out meds when we spoke and it wasn’t a good time to pester them, so I decided to let it be until today.
Each night as I lie down to sleep now, I tell fear that it is welcome to visit, along with its friends anxiety, panic and terror, and so far only the mildest form of fear has arisen, easily met and experienced, so it has not been a problem. I’m glad I’ve had so much practice dealing with nighttime fear and don’t mind (too much) if it arises. I suspect that the experience of watching an entire person slip toward the abyss could easily produce a difficult amount of fear and anxiety.
Thursday, February 21, 2013
A State of Disorgon
The title of this post is another way C. described his condition in the days before going into the hospital.
I got a call from a social worker at SFGH yesterday morning about trying to contact C.’s brother. I called C.’s roommate, J., but not only did he not answer, his answering machine was off, so I left work, rushed to the hospital, picked up C.’s keys (the social worker arranged for them to be released), went to his place and dug up his brother’s number (and picked up his mail, to check for bills to be paid), and went home and called the social worker back.
After work, I went back to the hospital, and C. and I were having a particularly nice conversation when two visitors arrived. Before they left, another visitor arrived, and then another, and then two more.
I decided it was time to give up and go have dinner. On my way out of the hospital, I met yet another visitor heading up to see C. I went to El Metate for a burrito and when I got back, two visitors were there (one who had been there when I left and a new one). By that time, the congenial topic of conversation was far gone from C.’s mind, but there was nothing to be done. (Something I’ve had to say to myself a lot: It’s going to go the way it’s going to go.)
C.’s biopsy is scheduled for today, and they wanted to do another MRI last night before doing the biopsy. He said it would be good if I went down with him, so I did, but he emerged from the MRI pretty much sound asleep. It was past 9:30, but Charlie had said I could call him as late as 10, so I gave him a call and he picked me up and gave me a ride home.
I got a call from a social worker at SFGH yesterday morning about trying to contact C.’s brother. I called C.’s roommate, J., but not only did he not answer, his answering machine was off, so I left work, rushed to the hospital, picked up C.’s keys (the social worker arranged for them to be released), went to his place and dug up his brother’s number (and picked up his mail, to check for bills to be paid), and went home and called the social worker back.
After work, I went back to the hospital, and C. and I were having a particularly nice conversation when two visitors arrived. Before they left, another visitor arrived, and then another, and then two more.
I decided it was time to give up and go have dinner. On my way out of the hospital, I met yet another visitor heading up to see C. I went to El Metate for a burrito and when I got back, two visitors were there (one who had been there when I left and a new one). By that time, the congenial topic of conversation was far gone from C.’s mind, but there was nothing to be done. (Something I’ve had to say to myself a lot: It’s going to go the way it’s going to go.)
C.’s biopsy is scheduled for today, and they wanted to do another MRI last night before doing the biopsy. He said it would be good if I went down with him, so I did, but he emerged from the MRI pretty much sound asleep. It was past 9:30, but Charlie had said I could call him as late as 10, so I gave him a call and he picked me up and gave me a ride home.
Wednesday, February 20, 2013
Contigo
I got an excellent night’s sleep Monday night, nine full hours, and I had time to sit for 45 minutes yesterday morning. Many days lately have featured just a token ten minutes of sitting, which is fine, but more is better.
I’m finding it weirdly helpful, besides smelling food, to look at it and touch it: the sunny round lemon bought in C.’s honor and how it squishes slightly when grasped, the pear-shaped avocado with its green bark and clay-like give, the olives glistening in their oily bath. Dune-colored cashews, linked elbow by elbow by elbow.
I spoke with C. on the phone in the morning and he said that at noon, he was going to go somewhere but wasn’t sure where, and he was concerned that he might not be there when I arrived. We agreed that he doesn’t have to worry about it, because I’ll call first and find out where he is before heading over. He was worried that I’d make an unnecessary trip. I assured him that wherever he goes, I will find him. (Afterward, I checked with the nurse to be sure he didn’t actually have an appointment; he didn’t.)
After work, I took a cab to the hospital and found C., alarmingly, speaking at times in gibberish, incoherent, unable to get the words out. He wasn’t doing that in the slightest the day prior. Of his own glasses, he asked, “Whose is this?” (Not “Whose are these?”) He was surprised to hear they were his.
He was obsessed with wanting to leave and to take all his stuff with him so he doesn’t have to “make a trip back to get the rest.” He kept saying he wanted to “get something” and to “take two.” I think it’s hard for him that some of his stuff is elsewhere in the hospital. Maybe wanting to “take two” meant taking his pants and his jacket. “I’m just going to get the two,” he said.
I’m torn between capturing as much as possible of what he says and fully experiencing him, which precludes scribbling on a piece of paper. I guess I’d better go now for the experience and let the exact quotes go.
While I was still with C., I got a call from a doctor with the MRI results: C. has multiple brain tumors, one of which they will biopsy on Thursday. It sounds like they feel pretty certain these tumors are malignant and will find out from the biopsy whether they are lymphoma or some other kind of malignant tumor, and if they can be treated.
After C. had his dinner, we discussed his jacket some more, which I assured him was locked up in the hotel safe. He said with relief, “So it’s safe,” and I agreed it was. However, the hotel ploy made it a little awkward when it was time to leave: why should he stay overnight in a hotel room by himself? I told him I’d call him first thing tomorrow and we’d make our plans, but he didn’t understand why he wasn’t leaving with me, which he asked about three or four times, mostly in Spanish: “Contigo?” (“With you?”) He asked, “Why am I not going with you?” It was hard and sad, and difficult to leave him.
I’d arranged with Charlie for him to pick me up about 7 and take me to Howie’s. I’m thinking it would be good to try to keep my life going in case I need it later; being with meditation friends (sangha) is important. However, it was a very sad evening. Howie talked about C. a lot and read a poem of his, and I cried and cried and cried. And cried and cried. It’s not going to be fun without C.
What I’ve learned from C. so far: the pain of having a closed heart, of speaking less than charitably of others. That you might not get precisely what you want, but you can certainly ask. That it’s more fun to think of a different way to say something or even make up a whole new word than just to say things the same way all the time. To consider how you really feel before acting and not just to follow the plan. To find something remarkable in every nook and cranny, in what might seem very ordinary. That there’s not the slightest need to rush, ever, even when you’ve just started crossing a four-lane street and the light is about to change. That someone else telling you to do something is never a compelling reason to do it. How sweet it is to have a hand to hold and friendly eyes to gaze into and someone to have dinner with and tell about your day.
I’m finding it weirdly helpful, besides smelling food, to look at it and touch it: the sunny round lemon bought in C.’s honor and how it squishes slightly when grasped, the pear-shaped avocado with its green bark and clay-like give, the olives glistening in their oily bath. Dune-colored cashews, linked elbow by elbow by elbow.
I spoke with C. on the phone in the morning and he said that at noon, he was going to go somewhere but wasn’t sure where, and he was concerned that he might not be there when I arrived. We agreed that he doesn’t have to worry about it, because I’ll call first and find out where he is before heading over. He was worried that I’d make an unnecessary trip. I assured him that wherever he goes, I will find him. (Afterward, I checked with the nurse to be sure he didn’t actually have an appointment; he didn’t.)
After work, I took a cab to the hospital and found C., alarmingly, speaking at times in gibberish, incoherent, unable to get the words out. He wasn’t doing that in the slightest the day prior. Of his own glasses, he asked, “Whose is this?” (Not “Whose are these?”) He was surprised to hear they were his.
He was obsessed with wanting to leave and to take all his stuff with him so he doesn’t have to “make a trip back to get the rest.” He kept saying he wanted to “get something” and to “take two.” I think it’s hard for him that some of his stuff is elsewhere in the hospital. Maybe wanting to “take two” meant taking his pants and his jacket. “I’m just going to get the two,” he said.
I’m torn between capturing as much as possible of what he says and fully experiencing him, which precludes scribbling on a piece of paper. I guess I’d better go now for the experience and let the exact quotes go.
While I was still with C., I got a call from a doctor with the MRI results: C. has multiple brain tumors, one of which they will biopsy on Thursday. It sounds like they feel pretty certain these tumors are malignant and will find out from the biopsy whether they are lymphoma or some other kind of malignant tumor, and if they can be treated.
After C. had his dinner, we discussed his jacket some more, which I assured him was locked up in the hotel safe. He said with relief, “So it’s safe,” and I agreed it was. However, the hotel ploy made it a little awkward when it was time to leave: why should he stay overnight in a hotel room by himself? I told him I’d call him first thing tomorrow and we’d make our plans, but he didn’t understand why he wasn’t leaving with me, which he asked about three or four times, mostly in Spanish: “Contigo?” (“With you?”) He asked, “Why am I not going with you?” It was hard and sad, and difficult to leave him.
I’d arranged with Charlie for him to pick me up about 7 and take me to Howie’s. I’m thinking it would be good to try to keep my life going in case I need it later; being with meditation friends (sangha) is important. However, it was a very sad evening. Howie talked about C. a lot and read a poem of his, and I cried and cried and cried. And cried and cried. It’s not going to be fun without C.
What I’ve learned from C. so far: the pain of having a closed heart, of speaking less than charitably of others. That you might not get precisely what you want, but you can certainly ask. That it’s more fun to think of a different way to say something or even make up a whole new word than just to say things the same way all the time. To consider how you really feel before acting and not just to follow the plan. To find something remarkable in every nook and cranny, in what might seem very ordinary. That there’s not the slightest need to rush, ever, even when you’ve just started crossing a four-lane street and the light is about to change. That someone else telling you to do something is never a compelling reason to do it. How sweet it is to have a hand to hold and friendly eyes to gaze into and someone to have dinner with and tell about your day.
Tuesday, February 19, 2013
Importunate Peanut
When Tom’s mother (Ann) and I were having lunch in Berkeley recently, we both had tea we thought was particularly good. Hers was a version of Earl Grey and mine was a green tea. The teas were from Steven Smith, Teamaker, in Portland (smithtea.com) and I ordered some of the tea Ann liked, to send to her, and the one I liked, and several other green teas, including matcha, because shopping really, really helps. Yesterday I put the various teas into glass jars with airtight lids and was swooning over the colors and shapes and particularly the smells. It’s profoundly satisfying to smell the green earthy cool scents.
I took a cab to visit C. in the afternoon in the hospital, and found out that he’d had his MRI, but didn’t hear anything about the results. It sounded like he’d had a good number of visitors earlier in the day, which made me worried that I won’t get enough time with him or that I will, but only by acting in a way that will make people hate me the way some people hated Yoko Ono.
He asked me about seven times in a row about my trip over there: “What was your sense of the trip? How was the trip?”
Then he talked, so sweetly, about how he wants our relationship to be, apologizing if he has ever failed to listen. He’s actually about the best listener I’ve ever encountered. He never, ever interrupts and he listens as if in his whole life, he’s never heard anything more interesting. It was a delightful conversation, but also painful: he doesn't know we're not going to be having this relationship he's imagining. He doesn't know he's going away. Only I know that only one of us will be left.
N. from Howie’s, a longtime friend of C.’s, joined us after a bit, bringing presents, and while C. had his hospital dinner, N. took me to El Metate, a place I’d never been before. It was wonderful—great food, charming atmosphere, excellent prices. It’s near 22nd and Bryant.
We went back to see C. for another while, and then N. left so C. and I could have some final time together, and then Charlie came and fetched me and took me home. All these helpful souls, so essential.
I got a nice phone message from Howie and one from Deborah, my mental health professional, who said this is one of the hardest things we ever go through, and that all my work has made me well equipped to deal with this.
I assume I’m dealing with C.’s impending demise, possibly preceded by a lengthy period of painful, horrible medical intervention, but you never know. He’s surprised me over and over, so it could be that in a month I’ll be saying to him, “I thought you were going to die! To think it was just that a peanut had somehow gotten lodged in your brain. You are a mysterious and remarkable fellow.”
I took a cab to visit C. in the afternoon in the hospital, and found out that he’d had his MRI, but didn’t hear anything about the results. It sounded like he’d had a good number of visitors earlier in the day, which made me worried that I won’t get enough time with him or that I will, but only by acting in a way that will make people hate me the way some people hated Yoko Ono.
He asked me about seven times in a row about my trip over there: “What was your sense of the trip? How was the trip?”
Then he talked, so sweetly, about how he wants our relationship to be, apologizing if he has ever failed to listen. He’s actually about the best listener I’ve ever encountered. He never, ever interrupts and he listens as if in his whole life, he’s never heard anything more interesting. It was a delightful conversation, but also painful: he doesn't know we're not going to be having this relationship he's imagining. He doesn't know he's going away. Only I know that only one of us will be left.
N. from Howie’s, a longtime friend of C.’s, joined us after a bit, bringing presents, and while C. had his hospital dinner, N. took me to El Metate, a place I’d never been before. It was wonderful—great food, charming atmosphere, excellent prices. It’s near 22nd and Bryant.
We went back to see C. for another while, and then N. left so C. and I could have some final time together, and then Charlie came and fetched me and took me home. All these helpful souls, so essential.
I got a nice phone message from Howie and one from Deborah, my mental health professional, who said this is one of the hardest things we ever go through, and that all my work has made me well equipped to deal with this.
I assume I’m dealing with C.’s impending demise, possibly preceded by a lengthy period of painful, horrible medical intervention, but you never know. He’s surprised me over and over, so it could be that in a month I’ll be saying to him, “I thought you were going to die! To think it was just that a peanut had somehow gotten lodged in your brain. You are a mysterious and remarkable fellow.”
Monday, February 18, 2013
Ward 4D
Yesterday I went to Rainbow and bought food that requires little or no preparation: pasta, pasta sauce, nuts, avocados, apples, olives, frozen berries, tea. When I was in the olive area, I remembered sharing the cracked green olives with C. on Friday night, and cried copiously: the olives I bought yesterday, I will eat alone, like the olives I will buy next week and every week after that. I felt utterly grief-stricken.
In the afternoon, I went to see C. in his new spot in ward 4D at SFGH. He had not yet had his MRI, and was asleep for the first part of my visit.
When he woke up, he asked, “As you look back on it, can you think of a way this could have been handled more judiciously?”
I said, “Well, having the MRI 24 hours ago would have been good. How about you?”
He said, “I haven’t handled it, so I don’t have any—trim.”
Then he mentioned over and over that he’d like to leave, were we going to go eat soon, what were we waiting for, and later, he wanted his keys and had to be told over and over, to no avail, that his keys were in his pants pocket and that he would receive both pants and keys upon being discharged. He asked, “What’s the last time we had an ice cream that finished off like this one has?”
I spent about three hours with him and then left the hospital in tears, off to try the nearby El Salvadorean restaurant, La Paz. I thought it would come in handy to know of a good restaurant in that area, but it wasn’t very good. I was about the only patron, and I was unbearably sad while I was there: eating alone instead of with C., and knowing he was just across the street with a brain tumor.
I felt like going back for the end of visiting hours, but knew it would be more sensible to go home and go to sleep. Then I had a brainstorm and called Charlie to see if he would pick me up in an hour, and he said he would. I went back and spent another hour with C., during which he mainly obsessed about his keys. Then I walked outside, and there was Charlie in his car. Knowing I had some sort of plan and someone meeting me made it possible to leave the hospital.
I received a voice mail from a friend of C.’s saying he had emailed his 100-person list to tell everyone to visit C. in the hospital! I was horrified—being flooded with zillions of visitors sounds like the last thing someone in a very serious medical condition needs, but the deed was done, and the friend is sure it was the right thing to do. I admittedly haven’t been C.’s girlfriend very long, but would still like to have been consulted before this notice went out. I can’t imagine emailing a hundred of my friends (if I had a hundred friends) and telling them to visit someone in the hospital without checking with the person’s partner.
On the other hand, if C. is really about to die, what other time will there be for people to see him and extend their love?
In the afternoon, I went to see C. in his new spot in ward 4D at SFGH. He had not yet had his MRI, and was asleep for the first part of my visit.
When he woke up, he asked, “As you look back on it, can you think of a way this could have been handled more judiciously?”
I said, “Well, having the MRI 24 hours ago would have been good. How about you?”
He said, “I haven’t handled it, so I don’t have any—trim.”
Then he mentioned over and over that he’d like to leave, were we going to go eat soon, what were we waiting for, and later, he wanted his keys and had to be told over and over, to no avail, that his keys were in his pants pocket and that he would receive both pants and keys upon being discharged. He asked, “What’s the last time we had an ice cream that finished off like this one has?”
I spent about three hours with him and then left the hospital in tears, off to try the nearby El Salvadorean restaurant, La Paz. I thought it would come in handy to know of a good restaurant in that area, but it wasn’t very good. I was about the only patron, and I was unbearably sad while I was there: eating alone instead of with C., and knowing he was just across the street with a brain tumor.
I felt like going back for the end of visiting hours, but knew it would be more sensible to go home and go to sleep. Then I had a brainstorm and called Charlie to see if he would pick me up in an hour, and he said he would. I went back and spent another hour with C., during which he mainly obsessed about his keys. Then I walked outside, and there was Charlie in his car. Knowing I had some sort of plan and someone meeting me made it possible to leave the hospital.
I received a voice mail from a friend of C.’s saying he had emailed his 100-person list to tell everyone to visit C. in the hospital! I was horrified—being flooded with zillions of visitors sounds like the last thing someone in a very serious medical condition needs, but the deed was done, and the friend is sure it was the right thing to do. I admittedly haven’t been C.’s girlfriend very long, but would still like to have been consulted before this notice went out. I can’t imagine emailing a hundred of my friends (if I had a hundred friends) and telling them to visit someone in the hospital without checking with the person’s partner.
On the other hand, if C. is really about to die, what other time will there be for people to see him and extend their love?
Sunday, February 17, 2013
Lost in the Found
I got a call from Dr. Alvarez Friday morning saying they are concerned the lesion could be a lymphoma. When I spoke with C., I could hear J., his roommate, carrying on in the background about his own health. C. was upset and overwhelmed, and I was worried about how to get him to our appointment that afternoon at Mission Neighborhood Health Center (MNHC henceforth), to get an order for an MRI.
I gave my boss a call and explained the situation and he said it will be fine to work from home for the time being, and that I should feel free to come and go as needed for appointments and not use vacation time. I wouldn’t have minded using vacation time. I just don’t want to lose this job.
When I spoke with C. a bit later, he was in a peaceful mood, no longer frazzled. Some things he said:
“I lost the connections.”
“There’s just no way that I can connect myself into it right now, huh?”
“You’re saying ‘Put on your air clothes’?” (The clothes one wears outside.)
“I’m really lost in the found or found in the lost.”
“I’m in a lock, like.”
I went over to C.’s, spoke with J. and restored good relations, and C. and I made it to our appointment at MNHC. While we were in the waiting room, on the Spanish-language TV came a pretty woman with very heavy makeup, including pink lipstick on very full lips. C. gasped and said, “Oh! Look at her labium!” And then he said, “I thought that and I didn’t think I was going to say it, but then I said it.” With C.’s permission, I repeated the labium remark to Dr. Alvarez and he thought that was funny, and C. beamed at having his humor appreciated.
Dr. Alvarez explained to C. that there is a lesion in his brain where the two lobes meet, and C. said, “Hmm, interesting.” He was entirely undisturbed. He asked, “Could this be because Spanish was my first language and then I had to learn English?” Dr. Alvarez said something like, “That’s entirely possible. I wouldn’t discount that,” which I found very touching. What a remarkable person Dr. Alvarez is. I think that was 90 percent excellent bedside manner, but that he also is entirely open to the mysterious ways the universe communicates. I’m incredibly grateful that we have ended up in his care. He was a new doctor for C.
After MNHC, we wended our way back toward our places. I was hoping to get him as far as his bank so I could peer over his shoulder while he deposited a paycheck and try to get his PIN, so I could attempt to keep his finances in order, but he wouldn’t walk that far.
For dinner, we had pasta with homemade tomato sauce and avocado again at my place. The good thing about socializing with someone with a brain tumor is that you can serve the exact same thing dinner after dinner and have it greeted with the same surprise and delight each time.
Yesterday morning on the phone, C. said he didn’t know what to do. I suggested he have something to eat and get dressed, but that was a bewildering sequence of ideas, so I said, “Why don’t you have something to eat and call me back?”
He said, “You’re saying I should have something to eat and call you back?”
I said, “That’s right.”
“I’ll have a piece of toast and call you back?”
“That’s right.”
That was the last I heard from him. He never called back and when I tried him, I got his machine. Finally I called his roommate, and J. said that C. had gone out about noon. By 5 p.m., I was starting to be very concerned: was he lost? Did he still know how to get home?
Charlie and Don and I agreed it was time to call the police, so I did that, but I also called SFGH, where someone immediately said he was there, in Zone 2.
“He’s there? What’s Zone 2?”
“Zone 2!”, the person snapped, so I got off the phone, and Don and I headed over to the hospital. Zone 2 seems to be some kind of overflow for the emergency room. C. was there, in a perfectly good mood, with the kind and capable Carolina, who'd known C. for decades and who explained that C. had called a friend and sounded so confused that the friend, lacking a car, sent Carolina to take C. to the emergency room. Since the idea had been for C. to go to SFGH and have an MRI, anyway, they went ahead and kept him there.
As the evening wore on and he was prevented from eating and also from putting his own clothes on and leaving, C.'s mood became less good. He refused to have his blood pressure taken at shift change, and was promptly injected with a sedative. As he became woozy, he reached for my hand and said, “Ayudame,” which was heartbreaking: “Help me,” in his first language.
He fell asleep after that, so I decided to go home, as there wasn't much point in sitting there watching him sleep. Charlie had offered to give me a ride home if it was a reasonable hour when I left the hospital, so I called him and he came and fetched me, which was a big help.
I gave my boss a call and explained the situation and he said it will be fine to work from home for the time being, and that I should feel free to come and go as needed for appointments and not use vacation time. I wouldn’t have minded using vacation time. I just don’t want to lose this job.
When I spoke with C. a bit later, he was in a peaceful mood, no longer frazzled. Some things he said:
“I lost the connections.”
“There’s just no way that I can connect myself into it right now, huh?”
“You’re saying ‘Put on your air clothes’?” (The clothes one wears outside.)
“I’m really lost in the found or found in the lost.”
“I’m in a lock, like.”
I went over to C.’s, spoke with J. and restored good relations, and C. and I made it to our appointment at MNHC. While we were in the waiting room, on the Spanish-language TV came a pretty woman with very heavy makeup, including pink lipstick on very full lips. C. gasped and said, “Oh! Look at her labium!” And then he said, “I thought that and I didn’t think I was going to say it, but then I said it.” With C.’s permission, I repeated the labium remark to Dr. Alvarez and he thought that was funny, and C. beamed at having his humor appreciated.
Dr. Alvarez explained to C. that there is a lesion in his brain where the two lobes meet, and C. said, “Hmm, interesting.” He was entirely undisturbed. He asked, “Could this be because Spanish was my first language and then I had to learn English?” Dr. Alvarez said something like, “That’s entirely possible. I wouldn’t discount that,” which I found very touching. What a remarkable person Dr. Alvarez is. I think that was 90 percent excellent bedside manner, but that he also is entirely open to the mysterious ways the universe communicates. I’m incredibly grateful that we have ended up in his care. He was a new doctor for C.
After MNHC, we wended our way back toward our places. I was hoping to get him as far as his bank so I could peer over his shoulder while he deposited a paycheck and try to get his PIN, so I could attempt to keep his finances in order, but he wouldn’t walk that far.
For dinner, we had pasta with homemade tomato sauce and avocado again at my place. The good thing about socializing with someone with a brain tumor is that you can serve the exact same thing dinner after dinner and have it greeted with the same surprise and delight each time.
Yesterday morning on the phone, C. said he didn’t know what to do. I suggested he have something to eat and get dressed, but that was a bewildering sequence of ideas, so I said, “Why don’t you have something to eat and call me back?”
He said, “You’re saying I should have something to eat and call you back?”
I said, “That’s right.”
“I’ll have a piece of toast and call you back?”
“That’s right.”
That was the last I heard from him. He never called back and when I tried him, I got his machine. Finally I called his roommate, and J. said that C. had gone out about noon. By 5 p.m., I was starting to be very concerned: was he lost? Did he still know how to get home?
Charlie and Don and I agreed it was time to call the police, so I did that, but I also called SFGH, where someone immediately said he was there, in Zone 2.
“He’s there? What’s Zone 2?”
“Zone 2!”, the person snapped, so I got off the phone, and Don and I headed over to the hospital. Zone 2 seems to be some kind of overflow for the emergency room. C. was there, in a perfectly good mood, with the kind and capable Carolina, who'd known C. for decades and who explained that C. had called a friend and sounded so confused that the friend, lacking a car, sent Carolina to take C. to the emergency room. Since the idea had been for C. to go to SFGH and have an MRI, anyway, they went ahead and kept him there.
As the evening wore on and he was prevented from eating and also from putting his own clothes on and leaving, C.'s mood became less good. He refused to have his blood pressure taken at shift change, and was promptly injected with a sedative. As he became woozy, he reached for my hand and said, “Ayudame,” which was heartbreaking: “Help me,” in his first language.
He fell asleep after that, so I decided to go home, as there wasn't much point in sitting there watching him sleep. Charlie had offered to give me a ride home if it was a reasonable hour when I left the hospital, so I called him and he came and fetched me, which was a big help.
Friday, February 15, 2013
Repulsive But True
C. now and then shares a frank remark or two about the workings of his intestines, so, having a couple of weeks ago produced really a rather remarkable, um, production, I described it to him on the phone. “Basic math,” he agreed, after I had estimated the length in inches, and then he murmured, “Repulsive but true.”
Yesterday morning on the phone, C. said these things:
“Disorientation knocks on the door.”
“I’m kind of in clouds or something.”
“I’m an open slate right now.”
He also said, most heartbreakingly, “If this could be a joke, that would be good.”
Lately, to express that he felt tired, he said, “I’m low force.”
I went over to his place yesterday at 10:30 a.m.; I'd taken the day off work. He’d been trying to get dressed for two and a half hours and still wasn’t quite done. In the end, I had to beg him to walk out of his apartment with me.
We went down to Mission Neighborhood Health Center, where C. met with Dr. Ricardo Alvarez. While we waited in the exam room for him to come in, we were talking about how society has changed, how people no longer live in groups, and I made some remarks on how the automobile played into that—if people couldn’t get along with their families, they now had the option to drive away. At the end of my mini-lecture, C. said, “You’re the director of that show.”
Dr. Alvarez proved to be tall and thin, wearing clogs and what appeared to be a Buddhist mala on his wrist. He was kind, calm, absolutely lovely. He asked C. what was wrong—was he feeling depressed? Oh, yes, C. said, he was feeling depressed. How long had he been feeling depressed? Since birth, C. estimated, and started to discuss his childhood, whereupon I asked C. if I might interrupt and share some observations. C. affably agreed, and I told Dr. Alvarez about the memory issues, and Dr. Alvarez said, more or less, “Oh!” and told C. that he was going to ask him some very focused questions. He also performed a brief physical exam.
At the end, he said he thought it might be a subdural hematoma, which is highly fixable, which was a tremendous relief to me. It seemed we would, incredibly, have C. back as good as new. We left and got on the bus to go to San Francisco General Hospital (SFGH henceforth) for a CT scan. On the bus, C. observed my little notebook and said, “I think N. got that idea from you.”
“I think she gets all her best ideas from me,” I joked, and he said, “Boy, that’s a solid snap.”
At the hospital, as we walked toward Radiology, he wondered if I was going to have a scan. I said he was the one who was going to have a scan and he said something like, “I feel like I’m taking all the turns.”
The scan took no time, and then C. and I made our way back to his place, stopping for a bit to sit on some stairs near 21st and Valencia. That morning, C.’s roommate, J., had given me a piece of his mind, saying he hasn’t observed anything different about C. at all and he’s known C. for 15 years so he ought to know, and who am I to have an opinion and so forth, and after we arrived there after being at the hospital, J. gave me yet another, even angrier, piece of his mind while C. fell asleep on his couch.
I went home and later called to invite C. for dinner, and was surprised that he said yes and turned right up. (I thought he might be too tired and want to stay home.) We had a lovely dinner. We shared some olives from Rainbow and we had pasta with homemade tomato sauce and avocado chunks, and Sleepytime Extra tea.
Alas, as he snoozed on my comfortable chair, I got a call from Dr. Alvarez saying there was no bleed, and that there is an ill-defined lesion in his brain. What is a brain lesion? The Internet and I agree that that is a brain tumor.
Yesterday morning on the phone, C. said these things:
“Disorientation knocks on the door.”
“I’m kind of in clouds or something.”
“I’m an open slate right now.”
He also said, most heartbreakingly, “If this could be a joke, that would be good.”
Lately, to express that he felt tired, he said, “I’m low force.”
I went over to his place yesterday at 10:30 a.m.; I'd taken the day off work. He’d been trying to get dressed for two and a half hours and still wasn’t quite done. In the end, I had to beg him to walk out of his apartment with me.
We went down to Mission Neighborhood Health Center, where C. met with Dr. Ricardo Alvarez. While we waited in the exam room for him to come in, we were talking about how society has changed, how people no longer live in groups, and I made some remarks on how the automobile played into that—if people couldn’t get along with their families, they now had the option to drive away. At the end of my mini-lecture, C. said, “You’re the director of that show.”
Dr. Alvarez proved to be tall and thin, wearing clogs and what appeared to be a Buddhist mala on his wrist. He was kind, calm, absolutely lovely. He asked C. what was wrong—was he feeling depressed? Oh, yes, C. said, he was feeling depressed. How long had he been feeling depressed? Since birth, C. estimated, and started to discuss his childhood, whereupon I asked C. if I might interrupt and share some observations. C. affably agreed, and I told Dr. Alvarez about the memory issues, and Dr. Alvarez said, more or less, “Oh!” and told C. that he was going to ask him some very focused questions. He also performed a brief physical exam.
At the end, he said he thought it might be a subdural hematoma, which is highly fixable, which was a tremendous relief to me. It seemed we would, incredibly, have C. back as good as new. We left and got on the bus to go to San Francisco General Hospital (SFGH henceforth) for a CT scan. On the bus, C. observed my little notebook and said, “I think N. got that idea from you.”
“I think she gets all her best ideas from me,” I joked, and he said, “Boy, that’s a solid snap.”
At the hospital, as we walked toward Radiology, he wondered if I was going to have a scan. I said he was the one who was going to have a scan and he said something like, “I feel like I’m taking all the turns.”
The scan took no time, and then C. and I made our way back to his place, stopping for a bit to sit on some stairs near 21st and Valencia. That morning, C.’s roommate, J., had given me a piece of his mind, saying he hasn’t observed anything different about C. at all and he’s known C. for 15 years so he ought to know, and who am I to have an opinion and so forth, and after we arrived there after being at the hospital, J. gave me yet another, even angrier, piece of his mind while C. fell asleep on his couch.
I went home and later called to invite C. for dinner, and was surprised that he said yes and turned right up. (I thought he might be too tired and want to stay home.) We had a lovely dinner. We shared some olives from Rainbow and we had pasta with homemade tomato sauce and avocado chunks, and Sleepytime Extra tea.
Alas, as he snoozed on my comfortable chair, I got a call from Dr. Alvarez saying there was no bleed, and that there is an ill-defined lesion in his brain. What is a brain lesion? The Internet and I agree that that is a brain tumor.
Thursday, February 14, 2013
Paper-Related Dithering
Tuesday I worked from home. When I had some spare moments, I called Laguna Honda and Adult Urgent Care with questions about C. and what might be possible for him. Laguna Honda offers long-term care and said that there is not actually a long wait to get in there. I also found out that C. might already have a primary care provider assigned. I will need to call Medi-Cal about that.
After work, I went to C.’s to help him with his papers, which he has mentioned several times lately. I found things not all that disorganized, but did some sorting and piling, and then we went to Papalote for burritos. As we walked home, I apologized for everything I could think of—the things I didn’t do that I wished I had, and vice versa, and C. didn’t seem to understand most of it, but of course listened patiently. Of course I cried while doing this.
When I got home, I went upstairs to visit Tom and said I’m kind of worried about the time C. might need, assuming he’s having a serious medical situation and given that my job is relatively new. I don’t want to put it in jeopardy, but Tom pointed out that I’m not the first person to be in a child care or elder care situation.
I noticed that some moments Tuesday I didn’t think of C. at all, and at others I did, but could feel the basic OKness underlying everything. However, at other times, I felt devastated: he’s going away, one way or another. It’s extremely painful in and of itself, but it also feels deeper in some kind of way. It feels as if I’m three years old and my mommy is going away. C. doesn’t look or act much like anyone’s idea of a mother, but I think he manages to push some of the same buttons.
Yesterday I worked from home again and got an email from a friend who had to manage the affairs of her brother (my friend P., who died a few years ago). What she had to say, including stuff about getting power of attorney, sent me into a minor panic, but then I started making calls and looking things up, and felt calmer.
After work, C. came over with his bag full of papers from his desk. He is in quite a dither about his papers. After awhile, we left the house and tried to figure out where to eat. We had a conversation that consisted of the same few questions over and over: where did I want to go? Did I have any place in mind we haven’t been before? Over and over.
Finally I steered us to Esperpento, and after a very prolonged conversation about what to order, I ordered for both of us, including things C. has liked in the past, and I enjoyed our meal but felt a little guilty about all the salt, in case C. has indeed had a stroke.
After work, I went to C.’s to help him with his papers, which he has mentioned several times lately. I found things not all that disorganized, but did some sorting and piling, and then we went to Papalote for burritos. As we walked home, I apologized for everything I could think of—the things I didn’t do that I wished I had, and vice versa, and C. didn’t seem to understand most of it, but of course listened patiently. Of course I cried while doing this.
When I got home, I went upstairs to visit Tom and said I’m kind of worried about the time C. might need, assuming he’s having a serious medical situation and given that my job is relatively new. I don’t want to put it in jeopardy, but Tom pointed out that I’m not the first person to be in a child care or elder care situation.
I noticed that some moments Tuesday I didn’t think of C. at all, and at others I did, but could feel the basic OKness underlying everything. However, at other times, I felt devastated: he’s going away, one way or another. It’s extremely painful in and of itself, but it also feels deeper in some kind of way. It feels as if I’m three years old and my mommy is going away. C. doesn’t look or act much like anyone’s idea of a mother, but I think he manages to push some of the same buttons.
Yesterday I worked from home again and got an email from a friend who had to manage the affairs of her brother (my friend P., who died a few years ago). What she had to say, including stuff about getting power of attorney, sent me into a minor panic, but then I started making calls and looking things up, and felt calmer.
After work, C. came over with his bag full of papers from his desk. He is in quite a dither about his papers. After awhile, we left the house and tried to figure out where to eat. We had a conversation that consisted of the same few questions over and over: where did I want to go? Did I have any place in mind we haven’t been before? Over and over.
Finally I steered us to Esperpento, and after a very prolonged conversation about what to order, I ordered for both of us, including things C. has liked in the past, and I enjoyed our meal but felt a little guilty about all the salt, in case C. has indeed had a stroke.
Tuesday, February 12, 2013
The Woman with the White Face
Yesterday I decided it was time to take C. to the clinic to see about his memory, and so took the day off work at the last minute. I called C.’s friend Don to see if he concurred, and once I told him what I’ve been noticing about C.’s memory, he thought it was a good idea.
C. agreed to this expedition at first, but when the time drew nearer, he began to sound reluctant, and I was afraid I was going to have taken a day off work for nothing, but in the end, we headed down to 16th Street, to the Mission Neighborhood Health Center. Though evidently not at all perturbed about it, he had no idea where we were going, and once or twice inquired. I said, “We’re going to the Mission Neighborhood Health Center,” and he reacted as if he’d never heard of it, though that’s where he almost always gets his health care. He asked where it is, and seemed to be unfamiliar with the notion of 16th St., though he’s lived near it for at least 30 years.
Near La Cumbre, we encountered this homeless woman we’ve seen three or four times before. Her face is always covered with something white and she explained to us one time that you don’t have to put eye shadow on your eyelids only—you can put it all over your face. She’s the sweetest thing, and when I saw her yesterday, I burst into tears, overwhelmed with grief about this woman on the sidewalk with eye shadow all over her face and about whatever was happening with C. We stopped and I gave her some money, tears splashing onto the sidewalk, which C. didn’t really notice, or only in passing. In any event, he’s less fazed by tears than anyone I’ve ever met. He tears up easily himself and doesn’t think crying is a strange thing for other people to do. Maybe it’s also because he spends so much time with little kids in his capacity as a substitute teacher.
We arrived at the clinic, where everyone was delighted to see C. By the time we left, the security guard was his new best friend. People love him. We went to the front desk and the kind woman there asked C., “What brings you here?” and he said serenely, “I can’t remember,” and I said, “That’s why we’re here.” I asked C. if he’d mind if I said a few things and he said that would be fine and I told the woman C. could no longer remember if he’d been to work or not, and she made us an appointment for Thursday with a doctor who is a co-director of the clinic.
Then we walked back toward our neighborhood and took a cab for a few blocks and spent some time in Borderlands Café, and then went to C.’s house. I wrote in his calendar book on the page for Thursday, in all caps, “Linda coming over at 10:30 on Thursday February 14 to walk with me to Mission Neighborhood Health Center appointment at 11:30. I am going to talk to Dr. Alvarez about my memory.” He puzzled and puzzled over that, reading parts of it aloud and asking what it meant. After a bit, I made the mistake of asking him if he was frightened, which then of course made him think there was something to be anxious about, and he said maybe he’d spend some time alone, and I went home.
But then I got to thinking that maybe C. is having a series of small strokes. Maybe this isn’t dementia at all, and I called Don again, and he thought it would be not a bad idea to take C. to the emergency room at San Francisco General Hospital, so I called C. to see if he was amenable and was pleasantly surprised to find that he was. I went online and reserved a City CarShare car, and as I walked to fetch it, I left Charlie a message saying that I wouldn’t be calling him after all, because Don and I were going to take C. to the emergency room.
I picked up C. and then we went to get Don out in the avenues and then went to the ER, where of course we waited and waited and waited. I had to stand up the entire time—bordering on three hours—because there is no piece of furniture in that room that I would allow to touch any part of my person or any garment thereon.
Dinner was various crunchy things from the vending machine. After a couple of hours, Charlie arrived. He’d heard my message, and lives near there. C. became restive and we could see that he wasn’t getting worse by the minute, anyway, so we decided just to let it go until his appointment Thursday, and I drove everyone home.
C. agreed to this expedition at first, but when the time drew nearer, he began to sound reluctant, and I was afraid I was going to have taken a day off work for nothing, but in the end, we headed down to 16th Street, to the Mission Neighborhood Health Center. Though evidently not at all perturbed about it, he had no idea where we were going, and once or twice inquired. I said, “We’re going to the Mission Neighborhood Health Center,” and he reacted as if he’d never heard of it, though that’s where he almost always gets his health care. He asked where it is, and seemed to be unfamiliar with the notion of 16th St., though he’s lived near it for at least 30 years.
Near La Cumbre, we encountered this homeless woman we’ve seen three or four times before. Her face is always covered with something white and she explained to us one time that you don’t have to put eye shadow on your eyelids only—you can put it all over your face. She’s the sweetest thing, and when I saw her yesterday, I burst into tears, overwhelmed with grief about this woman on the sidewalk with eye shadow all over her face and about whatever was happening with C. We stopped and I gave her some money, tears splashing onto the sidewalk, which C. didn’t really notice, or only in passing. In any event, he’s less fazed by tears than anyone I’ve ever met. He tears up easily himself and doesn’t think crying is a strange thing for other people to do. Maybe it’s also because he spends so much time with little kids in his capacity as a substitute teacher.
We arrived at the clinic, where everyone was delighted to see C. By the time we left, the security guard was his new best friend. People love him. We went to the front desk and the kind woman there asked C., “What brings you here?” and he said serenely, “I can’t remember,” and I said, “That’s why we’re here.” I asked C. if he’d mind if I said a few things and he said that would be fine and I told the woman C. could no longer remember if he’d been to work or not, and she made us an appointment for Thursday with a doctor who is a co-director of the clinic.
Then we walked back toward our neighborhood and took a cab for a few blocks and spent some time in Borderlands Café, and then went to C.’s house. I wrote in his calendar book on the page for Thursday, in all caps, “Linda coming over at 10:30 on Thursday February 14 to walk with me to Mission Neighborhood Health Center appointment at 11:30. I am going to talk to Dr. Alvarez about my memory.” He puzzled and puzzled over that, reading parts of it aloud and asking what it meant. After a bit, I made the mistake of asking him if he was frightened, which then of course made him think there was something to be anxious about, and he said maybe he’d spend some time alone, and I went home.
But then I got to thinking that maybe C. is having a series of small strokes. Maybe this isn’t dementia at all, and I called Don again, and he thought it would be not a bad idea to take C. to the emergency room at San Francisco General Hospital, so I called C. to see if he was amenable and was pleasantly surprised to find that he was. I went online and reserved a City CarShare car, and as I walked to fetch it, I left Charlie a message saying that I wouldn’t be calling him after all, because Don and I were going to take C. to the emergency room.
I picked up C. and then we went to get Don out in the avenues and then went to the ER, where of course we waited and waited and waited. I had to stand up the entire time—bordering on three hours—because there is no piece of furniture in that room that I would allow to touch any part of my person or any garment thereon.
Dinner was various crunchy things from the vending machine. After a couple of hours, Charlie arrived. He’d heard my message, and lives near there. C. became restive and we could see that he wasn’t getting worse by the minute, anyway, so we decided just to let it go until his appointment Thursday, and I drove everyone home.
Monday, February 11, 2013
Out of Rhythm
C. and I ended up not seeing each other for more than a week after what I’ve come to think of as The Incident at We Be Sushi, and it was strange and sad. We did exchange several voice mails, but didn’t talk directly until Sunday a week ago, and then we had a very good conversation and restored amicable relations.
Last Monday C. came over to visit in the evening, which had the flavor of a happy reunion. I was delighted to see him, but, weirdly, one second after he departed, I suddenly had a full-fledged sore throat.
On Tuesday, I still had the sore throat and felt exhausted in the evening, so I didn’t go to Howie’s, and C. also didn’t attend, but we didn’t get together.
On Wednesday I took a cab downtown to fetch my laptop and worked from home, ditto Thursday, when I felt dazed and tired, now definitely with a head cold.
Friday I was still working from home, and C. came over for lunch, which was lentil-potato-potato stew I’d made, which he complimented extravagantly, reminding me of how he raved once over some pasta puttanesca I’d made. He went off on errands of his own after lunch, and came back for a homemade dinner of green split peas and buckwheat (which I don’t think he liked quite as much). He said that evening that he was “out of rhythm,” and he’s said a time or two lately that he thinks something is wrong with his memory. Each time, I’ve said, “You might want to mention that the next time you see your doctor” and he says he doesn’t have a particular doctor he always sees and I say, “Well, whichever doctor you see, then.”
Saturday morning, I talked with C. on the phone and had to tell him over and over about my plans to go to Berkeley to meet Ann for lunch and a play. He kept saying, “Oh, you’re going to Berkeley?” as if he was hearing it for the first time, and in the past week or so, I asked him, “Did you work today?” and he answered, “I don’t know.” Sometimes in the past he’s had to think for a moment before he answers that question, like, “Hmm, did I work today? Ah, yes, I did,” so I wasn’t sure if “I don’t know” was just a bit farther down that same continuum or something really to worry about.
Ann and I had lunch at the Hotel Shattuck Saturday and then saw The Wild Bride at the Berkeley Rep and it was a pleasant afternoon, though I was still somewhat affected by my head cold.
Yesterday I was too tired to cook, so it was a resting day. I had ample time to think about C. and his memory and by evening had concluded he was sliding into dementia and bound to end up living on the sidewalk after he runs out of money, which would take about two weeks. I called Charlie E. in tears, to see if those darkest fears are at all realistic, but his household monthly potluck was about to start. He said we can speak on the phone tonight. I’m worried about C.
Last Monday C. came over to visit in the evening, which had the flavor of a happy reunion. I was delighted to see him, but, weirdly, one second after he departed, I suddenly had a full-fledged sore throat.
On Tuesday, I still had the sore throat and felt exhausted in the evening, so I didn’t go to Howie’s, and C. also didn’t attend, but we didn’t get together.
On Wednesday I took a cab downtown to fetch my laptop and worked from home, ditto Thursday, when I felt dazed and tired, now definitely with a head cold.
Friday I was still working from home, and C. came over for lunch, which was lentil-potato-potato stew I’d made, which he complimented extravagantly, reminding me of how he raved once over some pasta puttanesca I’d made. He went off on errands of his own after lunch, and came back for a homemade dinner of green split peas and buckwheat (which I don’t think he liked quite as much). He said that evening that he was “out of rhythm,” and he’s said a time or two lately that he thinks something is wrong with his memory. Each time, I’ve said, “You might want to mention that the next time you see your doctor” and he says he doesn’t have a particular doctor he always sees and I say, “Well, whichever doctor you see, then.”
Saturday morning, I talked with C. on the phone and had to tell him over and over about my plans to go to Berkeley to meet Ann for lunch and a play. He kept saying, “Oh, you’re going to Berkeley?” as if he was hearing it for the first time, and in the past week or so, I asked him, “Did you work today?” and he answered, “I don’t know.” Sometimes in the past he’s had to think for a moment before he answers that question, like, “Hmm, did I work today? Ah, yes, I did,” so I wasn’t sure if “I don’t know” was just a bit farther down that same continuum or something really to worry about.
Ann and I had lunch at the Hotel Shattuck Saturday and then saw The Wild Bride at the Berkeley Rep and it was a pleasant afternoon, though I was still somewhat affected by my head cold.
Yesterday I was too tired to cook, so it was a resting day. I had ample time to think about C. and his memory and by evening had concluded he was sliding into dementia and bound to end up living on the sidewalk after he runs out of money, which would take about two weeks. I called Charlie E. in tears, to see if those darkest fears are at all realistic, but his household monthly potluck was about to start. He said we can speak on the phone tonight. I’m worried about C.
Tuesday, February 05, 2013
Monday, February 04, 2013
Glochid-Studded Co-Worker
Friday evening a week ago, C. and I went to We Be Sushi for dinner—I wanted to go to Santaneca—and what I thought was a mild conflict arose—one we’ve had before—but he seemed unusually perturbed and didn’t want to hang out after dinner, so we walked off toward our respective establishments, and I wasn’t unhappy about that. I figured he would be on the phone first thing the following morning, but I didn’t hear from him at all on Saturday, which was rather surprising.
Last Tuesday was my father’s 75th birthday! Happy birthday, Dad. I love you very much.
That evening I went to Howie’s (no sign of C.) and L. gave me a ride home in her gorgeous, recently acquired Audi. She claims she doesn’t feel thrilled every time she sees it, but I love that car. I totally feel better about myself as soon as I get in it.
Wednesday morning I was meditating away when it dawned on me that I had never started the timer. By then it was five or so minutes past time to stop. This is the first time this has happened in more than 20 years of meditating. Damn, damn estrogen, or lack thereof.
Thursday evening I went to see Jack for bodywork. Mid-session, his doorbell rang and I said it was fine if he wanted to go answer it. As soon as he was out of sight, his cat rushed into the room, hopped onto my stomach and settled in for a nap.
I’m starting to appreciate the funereal quiet of my new office. Some people literally whisper when they address each other, and when I tear open a new package of Wasa crackers, I’m very conscious of what seems like a tremendous racket. At first I found it creepy, but now I see the office as being a place of profound calm and order, and I like it. Very restful to the nerves.
On work mornings, I pass a flower shop with some darling little cacti displayed outside. Each one is in a wee red pot with white stars on it, and the cacti are green at the bottom with bright appendages at the top in red or pink. I’ve developed a particular fondness for a pink one and went in to buy it last week. I didn't know if there was a good spot for it in my apartment and figured it would probably die in my cube, so I put it on the windowsill between the cubes of Igby and her neighbor. I sent them an email saying I’d gladly move it if they didn’t like it, but after the neighbor arrived and saw it, she sent an email saying, “I love it! Good to have a little cactus working with us! Thanks a lot!”
Over the weekend, I called Tom’s mother, Ann, to see if she’d like to go to the Berkeley Repertory Theatre with me, and she said she had actually been thinking of asking me the same thing. She mentioned that maybe we could get season tickets next year, which I would love to do. I saw Tom soon thereafter and said, “I’m thinking of breaking up with C. and going out with your mother instead—would that make you feel weird?” Of course I was joking, but am delighted at the thought of going to see a play with Ann.
Saturday evening Tom and I had dinner at Sunflower. Then I started to watch Hurlyburly, but even despite Sean Penn and a youthful Kevin Spacey, found it so awful I had to stop it and instead watched the AIDS documentary We Were Here.
I’ve made a useful discovery about this body temperature business (damn you, estrogen), which is that anything that heats the system even a little will trigger a hot flash, and anything that cools the system even a little will trigger a cold flash. Or, said another way, the effects of even a seemingly minor temperature-related stimulus are disproportionate. For instance, when I get in bed at night and pull the covers to my chin, even though I don’t feel overwarm at all, a hot flash will occur in seconds, because having the covers on is warmer than not. Likewise, I have one every morning after arriving at work, because it’s warmer inside than outside.
When I take a sip of warm tea or have a spoonful of warm soup, I have one, and can quickly cool off by sipping coldish water and fanning myself with a good old paper fan, but then will become chilled and stay that way for a while. The cold seems to last a lot longer than the heat.
However, now that I’ve figured this out, I know to resist the temptation to drape my fleece jacket over my knees when the freeze sets in, because that could lead to yawing back and forth between temperature extremes all day, even more than is now occurring.
As for the mood swings, I haven’t discovered anything useful about them yet, beyond observing how very like being 16 again this is. It wasn’t fun then, and it isn’t fun now to lurch from teary misery to giddy euphoria and back again in moments. Actually, I don’t think there was much giddy euphoria then; maybe it was more teary misery and unrestrained rage. Anyway, since I can’t take estrogen or anything that has similar effects, I am taking working with this on as a practice. It helps a lot just to know it’s hormones and not to believe my thoughts, but it’s still kind of difficult.
Often lately I mentally sift through various pieces of advice from meditation teachers read or heard over the years, eventually arriving at this one, from Phillip Moffitt: “Sometimes you just have to wait it out.”
It’s also given me many opportunities to think about inevitable suffering versus the optional or self-inflicted variety. Some amount of suffering related to sickness, old age, death and constant change is unavoidable, though can also certainly be made worse.
Then there’s the suffering that comes from grasping and greed, from aversion and ill will, from confusion—not seeing clearly, taking this to be that, thinking such-and-such thing will bring happiness when it never will. All of this suffering is more or less optional, depending on if we’re able to see what’s happening (not always easy) and make better choices (harder still). Yet, good to know that some brands of misery can potentially be avoided, and even good to know that the unavoidable misery isn’t due to a personal failing. Everyone has some.
Last Tuesday was my father’s 75th birthday! Happy birthday, Dad. I love you very much.
That evening I went to Howie’s (no sign of C.) and L. gave me a ride home in her gorgeous, recently acquired Audi. She claims she doesn’t feel thrilled every time she sees it, but I love that car. I totally feel better about myself as soon as I get in it.
Wednesday morning I was meditating away when it dawned on me that I had never started the timer. By then it was five or so minutes past time to stop. This is the first time this has happened in more than 20 years of meditating. Damn, damn estrogen, or lack thereof.
Thursday evening I went to see Jack for bodywork. Mid-session, his doorbell rang and I said it was fine if he wanted to go answer it. As soon as he was out of sight, his cat rushed into the room, hopped onto my stomach and settled in for a nap.
I’m starting to appreciate the funereal quiet of my new office. Some people literally whisper when they address each other, and when I tear open a new package of Wasa crackers, I’m very conscious of what seems like a tremendous racket. At first I found it creepy, but now I see the office as being a place of profound calm and order, and I like it. Very restful to the nerves.
On work mornings, I pass a flower shop with some darling little cacti displayed outside. Each one is in a wee red pot with white stars on it, and the cacti are green at the bottom with bright appendages at the top in red or pink. I’ve developed a particular fondness for a pink one and went in to buy it last week. I didn't know if there was a good spot for it in my apartment and figured it would probably die in my cube, so I put it on the windowsill between the cubes of Igby and her neighbor. I sent them an email saying I’d gladly move it if they didn’t like it, but after the neighbor arrived and saw it, she sent an email saying, “I love it! Good to have a little cactus working with us! Thanks a lot!”
Over the weekend, I called Tom’s mother, Ann, to see if she’d like to go to the Berkeley Repertory Theatre with me, and she said she had actually been thinking of asking me the same thing. She mentioned that maybe we could get season tickets next year, which I would love to do. I saw Tom soon thereafter and said, “I’m thinking of breaking up with C. and going out with your mother instead—would that make you feel weird?” Of course I was joking, but am delighted at the thought of going to see a play with Ann.
Saturday evening Tom and I had dinner at Sunflower. Then I started to watch Hurlyburly, but even despite Sean Penn and a youthful Kevin Spacey, found it so awful I had to stop it and instead watched the AIDS documentary We Were Here.
I’ve made a useful discovery about this body temperature business (damn you, estrogen), which is that anything that heats the system even a little will trigger a hot flash, and anything that cools the system even a little will trigger a cold flash. Or, said another way, the effects of even a seemingly minor temperature-related stimulus are disproportionate. For instance, when I get in bed at night and pull the covers to my chin, even though I don’t feel overwarm at all, a hot flash will occur in seconds, because having the covers on is warmer than not. Likewise, I have one every morning after arriving at work, because it’s warmer inside than outside.
When I take a sip of warm tea or have a spoonful of warm soup, I have one, and can quickly cool off by sipping coldish water and fanning myself with a good old paper fan, but then will become chilled and stay that way for a while. The cold seems to last a lot longer than the heat.
However, now that I’ve figured this out, I know to resist the temptation to drape my fleece jacket over my knees when the freeze sets in, because that could lead to yawing back and forth between temperature extremes all day, even more than is now occurring.
As for the mood swings, I haven’t discovered anything useful about them yet, beyond observing how very like being 16 again this is. It wasn’t fun then, and it isn’t fun now to lurch from teary misery to giddy euphoria and back again in moments. Actually, I don’t think there was much giddy euphoria then; maybe it was more teary misery and unrestrained rage. Anyway, since I can’t take estrogen or anything that has similar effects, I am taking working with this on as a practice. It helps a lot just to know it’s hormones and not to believe my thoughts, but it’s still kind of difficult.
Often lately I mentally sift through various pieces of advice from meditation teachers read or heard over the years, eventually arriving at this one, from Phillip Moffitt: “Sometimes you just have to wait it out.”
It’s also given me many opportunities to think about inevitable suffering versus the optional or self-inflicted variety. Some amount of suffering related to sickness, old age, death and constant change is unavoidable, though can also certainly be made worse.
Then there’s the suffering that comes from grasping and greed, from aversion and ill will, from confusion—not seeing clearly, taking this to be that, thinking such-and-such thing will bring happiness when it never will. All of this suffering is more or less optional, depending on if we’re able to see what’s happening (not always easy) and make better choices (harder still). Yet, good to know that some brands of misery can potentially be avoided, and even good to know that the unavoidable misery isn’t due to a personal failing. Everyone has some.
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