Wednesday, October 23, 2002

Jogger Honey

I'm trying out a new journal. This one is powered by Radio Userland. I seem to have lost my archives in Blogger, and it's difficult getting help with problems. So.... I'm still experimenting to see if I can find a perfect home for my online diary. My new diary is at Jogger Honey. Or you can do a web search on "Jogger Honey".

Wednesday, October 16, 2002

Tsoks, buddhism, and my sangha

Yesterday we had a tsok in our buddhist class. A tsok is a tibetan buddhist potluck. It's about a 1 1/2 hour series of chants and singing, followed by sharing food. It's a really beautiful ceremony.

I had had a bad day and was feeling somewhat irritable about things. As we prepared the food together, I started ranting about some of the things/people who were bothering me. One of my sangha members stopped what she was doing and came over to me and hugged me. She didn't say anything, she just hugged me. Then another person came over and hugged me. Then it was infectious, and everyone spontaneously hugged each other. It was really a beautiful experience, because our hugs were not superficial, they were from the heart.

Later, as I sat there and listened to the chanting and singing, I thought about how much I loved those sounds. Tsoks are a time of releasing all beefs that you have with the world, and a time of reminding yourself to live in the moment.

At the end of the tsok I was (as I am with all tsoks) so full of love for the people in my sangha, and forgiveness for the people in my life who stress me out and for myself for letting myself get stressed out.

I cannot begin to describe the things I learn from the people in my sangha. The buddhist philosophy of loving all beings, and the practice which teaches you how to do this really speak for themselves. I don't think I've ever met a group of people who are as incredibly grounded in their view of the world as these people. What happens when you're grounded through meditation and studying the teachings is that you start interacting with people from a different place -- accepting them on their terms, and being able to hear what they're saying. You're able to feel compassion for people who are perceived as difficult for others. You're less inclined to impose your views on people. You don't have to prove anything to the world, you don't have to prove that your religion is better than anyone else's, you don't have to prove how much time you spend praying and meditating, you don't have to prove how much you love everyone. You just are you, and by being you, all that seems to naturally be evident.

It's sad that it took cancer for me to do the searching to find this spiritual path, because I feel that I might have had a really spectacular life if I had learned the things I'm learning years ago. I'm grateful that I did my spiritual search and that I did find this path, though, because whatever life I have left is going to be meaningful and full of peace. That's a really nice place to be.

Tuesday, October 15, 2002

Duct Tape Rules!!!

Monday, October 14, 2002

Thinking back on my last year

With the fall colors coming to New England, I think about where I was last year. In a couple of months I will be a year away from the end of my cancer treatments. It's strange... when I was porting my cancer diary from LiveJournal to Blogger I read my entries and remembered things I had long since forgotten -- the torture associated with having no taste buds (actually it was more like having taste buds that made everything taste absolutely awful), the cytoxan stench that oozes from your pores after your chemo, making you even sicker than you would otherwise be; always feeling queezy, even on good days.

When I think back on last year, though, it's really very strange to me that I think of how wonderful it was to go hiking with my dog through the woods, when the weather started getting cooler and the bugs disappeared. We'd stop by a running stream that overlooked a field of purple flowers, with a wooden bridge crossing. Mac the Lab would love jumping into the water and digging up rocks. We'd go to where the beaver dam was, and Mac would somehow never bother the dam. I'd throw sticks in the ponds that we encountered and he'd eagerly swim out for them, and then dash back, frolicking and shaking his head playfully and then finally throwing himself to the ground and rolling around in the dirt with ecstasy. I'd spend that time meditating, being mindful of my surroundings and my dog, and thinking of things I could write in my journal.

I think about the closeness I felt to the people who were my support group -- my LiveJournal friends, my RL support group, my buddhist sangha. Most of us (except my sangha) have grown apart as our lives have continued. I don't check people's diaries as often as I should. I rarely talk with my support group members. People with whom I had frequent e-mail contact with have now gone their own way as have I. But even now, I think of my time last year with these people and how we all held virtual hands with this bond called cancer that touched each of us in some way. I feel like I've been on a survival journey with these people -- a journey both tragic and wonderful as we all pulled out, scarred but alive and so much more appreciative of living than most.

I think about the wonderful feeling of curling up under my down blanket with my favorite white cotten cap covering my bald head, waking up to Mac the Lab jumping up on my bed, pushing his labrador bottom into me for a butt-scratch, while he had his morning chew session with his doggie blanket. No matter how much I tried to cajole him to spend the nights with me, he always stayed until a certain time, and then would go upstairs and sleep with John.

I think about how liberated I felt when I lost my hair for the second time and realized I'd totally gotten over being ashamed for being bald.

Sunday, October 13, 2002

Nursing Homes, A Very Sad Weekend

We just got back from NYC. John's father is in a nursing home. Nursing homes are such sad places to be. It's like a home of orphans, only these orphans aren't children, they're old people. All of them seem so abandoned and alone. There is a stench of urine that permeates every room, no doubt from the 30 or so people on the floor who are all wearing diapers and messing in their beds. The floors are littered with remnants of uneaten food and other unknown substances.

For the 30 people, there are only 1 or 2 nurses aides, possibly more. When you can't go to the bathroom on your own and you need help, you have to wait for someone for about 45 minutes. That's only if you ask for help. I can only imagine how long people have to wait who can't communicate their needs.

There is a day room with windows where they wheel the patients. There everyone sits, quietly, staring at the floor, or staring blankly at the walls. One man was holding his head in his hands, another man, blind, was ranting madly at some unseen demon. Most of the people seemed incommunicative. My father-in-law's roommate spends his days watching TV, sitting with his eyes about 3 inches from the screen, only moving to eat his meals. He was wearing a bandage on his hand. I asked him why he wore the bandage and he said it was from being hit by another patient who came into their room in the middle of the night. One man was a 59-year-old who had had a stroke. He walked up and down the hallway, back and forth, over and over. As he passed me, I smiled at him. He stared at me. He had a stain on his chin. I don't know if it was a blood stain from something or what. As the evening wore on, he started to take his pants down and walk the hallway holding his pants, with his diaper showing. I don't know if his diaper was soiled, or why he was doing that.

There was a piano recital when we were there, in the cafeteria. We took my father-in-law to see it. We were the only guests. The rest of the room was filled with patients, heads hanging, expressionless, some drooling.

This is the world that we commit our old people to. It's a world of lifelessness and waiting for death, a world without sunshine or joy. It's made me realize how much I want to do the hospice work, or if I don't do the hospice work, I'll at least do some volunteer work in a nursing home. Every lifeless, hanging head has a story to tell, but no one to tell it to. Every person is a living, breathing human being, but made inhuman because our society doesn't have the patience or the understanding to give a shit about them.

The feeling I get is that these people have been put here, out of sight, out of mind, to disappear. We want happy things in our lives. We want to go about our days thinking about what new dress to buy, parties, lovers, adventure. We don't want to be bothered by taking care of old people. We convince ourselves that it can't be helped. We just don't have the time or the means to take care of our parents. Then we commit them to nursing homes, and then we convince ourselves that we'd like very much to visit them, but we just don't have the time to make it there much more than every couple of months. And then we convince ourselves that they're having a grand time at the nursing home. Deep down, we're hoping they'll just disappear.

Yes, it's a very sad world for people who are old. The ironic thing is, we're all growing old. It's not an affliction that just a chosen few suffer from. And by choosing not to do anything about it, we're paving the way for our own old age.

Thursday, October 10, 2002

Buddhism, stress, impermanence, life, and dinner party strategies

Well well well. I finally have cable modem, and am able to join the rest of the world in enjoying greater-than-14.4K Internet speeds. It sure makes a difference, especially for blogger. Speaking of which.... the e-mail posting capabilities don't seem to be working yet. I managed to get one test post to my site, and it hasn't worked ever since. I'm thinking about switching to Radio Userland. I downloaded software, just need to spend some time with it.

The older I'm getting, the more aware I'm getting of the buddhist principle of impermanence. The buddhist teaching is that all things are impermanent, and all things are interconnected. It's such a poignant lesson when you see people you love growing old and getting sick. Both John's and my parents have health issues right now. The other night I got up in the middle of the night and felt like I was going crazy, and about to fall apart with building stress. Then, the next day, I received my Rigpa tape-of-the-month. They are tapes of my teacher's latest teachings. In this latest tape, Rinpoche talks about living in today's society. He says "everyone has the ability to go crazy, even me". I had to smile when I heard that. I always need to remember: whenever you feel something, think "others feel this too". When I heard him saying that I felt so good just knowing that he felt the same thing.

Somehow whenever I feel overwhelmed by impending stress, I can dissipate it by meditating and exercising. I hadn't been exercising for a while because of my own recent problems. Once I started exercising again, the meditation seemed to fall into place, and I began to feel better.

I see so much terrible terrible stress in the people around me. I can tell a couple of people at work are really hating their jobs. I feel badly that people in general are so stressed out all the time. Life is so short, and wasting it by being bothered by things that don't matter is such a tragedy. Too bad everyone can't feel their own mortality. I know before my cancer diagnosis I had an intellectual understanding of my mortality, but never really did comprehend it. Now, yup, I truly comprehend it. This cancer may or may not kill me, but I do truly understand the meaning of living every day in the best, deepest, truest, most meaningful way I can.

Last weekend John and I had a dinner for our 2-meter friends. These are people we talked with on the radio but had never met in person. It was really awesome meeting everyone in person. When you're talking on the radio, you get a certain impression of who people are, and you imagine what they might look or act like in person -- just like the Internet. Meeting them in person and attaching living, breathing human beings to those voices was really a wonderful experience. I was the first REAL dinner John and I have ever had (other than family and Sangha potlucks. Sangha potlucks are Buddhist potlucks called "tsok"s. They are really a family dinner, because people in the sangha do all of the cleaning. It's the perk of hosting one of these things. You don't have to clean up. I love it.). Anyway, John and I didn't do too good of a job being hosts. I kept trying to talk to people, and John kept calling me into the kitchen to do stuff to help prepare. Afterwards we talked about things like how we sat people, and how we arranged the furniture and presented the food and thought about things we could have done differently. It's a sort of interesting puzzle, being a good host, because you have to dynamically analyze your guests and the conversation, and determine how to make sure everyone is having a good time. I really hope we can do this again, because I want to try some of the things we thought about and see if it would change some of the conversational dynamics and keep everyone feeling involved.

A couple of months ago I suggested to some of the people in my Sangha that I write a book about them. I thought I'd publish it in a sort of newsletter form first, and see what sort of reactions I get. The reason is because it is a really fascinating group of people. If you think about it, anyone who would consciously go to a buddhist class based on the foundations in a book with the word "dying" in it would have to be a pretty unusual person. And most of these people have extremely unusual, interesting life stories to tell. I'd really love to write about them and my experiences in the sangha. They are truly an extension of my family. Anyway, I didn't get very positive reactions to the idea so I dropped it. The other day, one of the senior students encouraged me not to drop the idea and to at least try it. So, I think I'll do that. It'll be fun. Unfortunately, my free time is dwindling down to almost nothing which is not a good thing. How does one find time to do everything in life? I wish I knew the answer to that one.

Friday, October 04, 2002

My Ham Club -- What Great People!!

I just had a blast QSO'ing (ham talk for an on-the-air conversation) with some other members of my ham club. The people in the ham club are really nice. I haven't been doing much ham stuff lately, but just going to the club meetings and talking with people is so much fun.

My ham club reminds me in some ways of the guild I used to belong to when I played Ultima Online. My guild in UO was sort of a child's version of a club, and the ham club is a grown-up's version. In real life I don't know a lot about the people who were in my guild in UO. I know that a lot of them were in their teens. Many were older than that. There was a lot of bravado and pettiness in the game. Having PKs (player killers -- people who went around killing other people's characters. The reason why getting PK'd was a bad thing was that they'd then steal everything you had, and sometime it took weeks and weeks of work to get your equipment) in the game didn't help either. In the end the PKs and the pettiness of some of the other players drove me away. I never missed playing the game, but I have thought quite often about what a wonderful world the game created, and how it opened my eyes to the power of the Internet and online interactions with people.

I digress. My ham club is a sort of real-life guild. The bond of the members is really nice. I think the personality of the board members really affects the personality of the club. I've been trying to get a "ragchew" session going where people meet on the air and shoot the bull. I've been trying to do it on HF, which is really frequencies meant for long distance. It's been tough going. I've been trying to do this for about 2 weeks now. Today, 2 other members met me on-the-air, and we chatted. It was so gratifying to talk with them, and also very gratifying to have people who cared enough to help me try to get it going. It'll be sad if it flops, which it might, because finding an HF frequency to chat on isn't easy. Still, I had a great time tonight and will be thankful that we had at least this, no matter what happens.

I'm always so amazed at how the people in my life are so wonderful. I don't know if it's a coincidence that I'm involved with groups that have fantastic people, or whether it's me that's different. I wish I knew. All I know is that, of all of the groups that I meet with right now, I love the people in every one of them.

Tuesday, October 01, 2002

On Being a Cancer Survivor

I read somewhere that Lance Armstrong once said that he didn't want to be known as the first person to win the Tour de France three times in a row, he wanted to be known as the first cancer survivor to win it.

I've been thinking about how profound the change is in our lives when we've had cancer. I shouldn't say "we", because I notice that not everyone is the me in this regard. Some people I know want to just put the cancer experience behind them and pretend it never happened. Others live in terror that the cancer will come back, and are basically basket cases. For me, and I think the same may be true for Lance Armstrong as well, I am first and foremost a cancer survivor. The only reason I don't say this to more people is that people don't understand the words. Most non-survivors are uncomfortable talking about it too. But deep down, that's what I am above all else. This cancer will be driving the direction of whatever life I have left. I may die from this cancer,
or I may not. It doesn't matter. What matters is that I took the experience of having cancer and shaking hands with my mortality and I made my life worth living.

Last week I interviewed hospice organizations in preparation for doing hospice volunteer work. One hospital volunteer group director interviewed me and after interviewing me for about 45 minutes, said "well, I'm sorry to say this, but you don't qualify because of your cancer."

"huh? why?"

"Because you're going to have unhappy memories when you see patients sick and dying, and I don't think you're going to be able to handle it."

She went on to tell me that the final decision wasn't in her hands anyway, but she "just knew" the person who makes the final decisions would see the word "cancer" in my application and reject me outright.

That's pretty sad. Because I have so much more to offer someone who's sick and dying because of my cancer. I think what happened is that she imposed her fears of cancer and dying into my situation ("if I were you I'd be afraid so you must be afraid"). What she couldn't understand is that, to me, sickness and dying are very sad things, yes. But living is a joy. I don't see myself crying over someone sick or dying. I see myself sharing the beauty of life with people. I don't see myself thinking "ohmygod, that person's died and I'm going to die too!". I see myself thinking "I'm going to miss this person", and then moving on with the celebration of my life and of all of the things I just learned about myself and my life from this person, and thinking how much better a person I am to have shared living and dying with that person.

That was the first time I really felt like I was being discriminated against because of my cancer. It was disappointing that she couldn't see past my cancer.

The fact that I've had a cancer diagnosis doesn't really mean I've been specially targetted to die when everyone else is going to live forever. To me it means I've been given the gift of seeing that we're ALL going to die. This special sight is the foundation for understanding what's necessary to truly be appy.