Sunday, March 31, 2013

More things people say, and misc.

Piles of healthy things on kitchen counter. 
Sunday, 1:17 pm. Sudden downpour. It sounds really great. I'm drinking a smoothie made of berries, mango, kale, spinach and misc. powders. I haven't done the full-on cleanse yet because I haven't read the book.

I realize that I am waiting for one of two things:
  1. To develop symptoms, which will escalate for a few months until they kill me; or, 
  2. To not have developed symptoms for the number of months that indicates I'm in remission (don't know that number).
Either could happen. #1 more likely? It's very limbo-like, and not in the sense of the fun dance game you play in Trinidad (but maybe partly like that?)

I got a sweet card in the mail from a friend in England. Among other things, it said, "I will really miss you." From my point of view, this is like hearing, "After you cease to exist, blah blah blah blah." (I was laughing when I wrote that!) It's  fascinating, some of the things people say/write to me. In any case, I love getting letters. 

I also noticed or realized there is an area I am touchy about. The fact is that the issue of whose fault it is being sick, or assuming anything has psychosomatic causes, is touchy for me. I am surrounded by very kind people who tend not to accuse me of having caused my own cancer, however sometimes I do notice that people assume they know why someone got sick (he got the attention that he wanted through his illness, or how could she really have developed symptoms so quickly after getting diagnosed?) Or ideas or models that attribute THE cause of disease to the mind. Judging someone else's illness in this way upsets me, it doesn't even have to be my illness.

View from kitchen window,
Buildings downtown at sunset.
On the other hand, what does one say to someone who's dying or sick? We look at our future selves as if out of a Dickens story, and maybe start babbling to the spectre. There is also a Buddhist ceremony (called kalyana mitrata or spiritual friendship) about which I won't go into detail, but just say that it involves two Order members. In my case, it was suggested that there be three Order members, which I've never heard of before. Obviously a backup plan or two Order members for when I'm dead! I decided not to take it personally though it was tempting to do so. In a way it's better for me too, then I don't worry as much about the effect of my death on other people.

Sadly, my stepmom Chris, who my dad has been married to for 33 years, was diagnosed with lung cancer. She is feeling very poorly now and having a hard time managing my dad, who needs a lot of help these days. Much about her condition and possible treatment is still unknown, but it is very upsetting. It has, however, helped me to know more how people have felt about me. For example, I would like to see her, but I'm sure that is not what she needs. What she needs is help, not people who are moved to visit because she is sick. (Perhaps some people who are sick love visiting, and it depends on how much of an energy drain it is for the particular person.) Laura's going to be down there tonight to help them out for a few days. I hope I can do that some time but it depends on my own energy, visitors and other commitments.

We did the MBSR daylong yesterday. It's great working with Bill and Allison, and the best part was seeing how changed people's faces were at the end, so much gentler and more relaxed. But I just barely, if at all, had the energy to do it (or around 1/3 of it, which is what I did.)

Today, my head hurts when I cough and I am spending a lot of time in bed.

Sounds and Visuals Section

Here is a photo essay (among other things) that Pasadini (who is recovering from thyroid cancer) sent: The Battle We Didn't Choose: My Wife's Fight with Breast Cancer. Click the first photo and keep clicking Next. It is beautiful and sad.

Still Alice
, as I mentioned in the last post, was great.

Watched Heaven with Cate Blanchett which I thought was well done, but my very limited capacity for the falling-in-love-forever-in-ten-seconds type of love story gets in a way of a high rating. Also watched a few episodes on Netflix of Mushi-Shi, a weird anime with 20 minute episodes featuring a spirit healing Sam Spade type character.

Final words of wisdom (oops, I probably shouldn't say 'final', eh?) from Hridayashri via CK:


  1. I'm really sorry to hear about your stepmom. It sounds like a very difficult situation for her and your family.

    I thought of this reading your post. I have a friend who's quadriplegic and has irritable bowel syndrome. I used to be her personal care attendant. When she was having cramping and diarrhea one day, which I know can be very painful, I asked her if she was in pain. She said no, but thank you for asking. I'd forgotten for a second that she can't feel pain the way I do because she's quadriplegic, but she appreciated being asked because she actually can feel pain, only in a different way, more as an overall sensation (weakness, clamminess, something "off.")

    This came to mind when I was reading your post, I think because... how to treat sick people? Like people. But it's hard to do, unless I can forget myself for a second. I don't mean to oversimplify, I'm thinking out loud. Someone else might've been enraged by my asking about their pain.

    Hope you are feeling well today. :)

  2. When Steve was ill and we knew he was dying, a friend said to me "well, you're still young", meaning that I would be able to find someone else. This was quite painful to me, since that kind of thing was very far from my mind and I was struggling to cope with the day-to-day business of caring for Steve. But I also realized, since she is a good friend, that in her own way she was trying to comfort me and to ensure me that I would be able to go on living and that I had a future. It is hard for people to say anything at all in situations involving death. I was grateful that she tried and took the meaning behind her words.

    1. That is interesting. I realized that my friend who said she would miss me, meant it as affectionate. Like, I'll miss you when you move to Tibuktu, whenever that will be. I find these kind of things sort of jarring, but in another way I like them, I like pondering why they're jarring! And I like people communicating with me in whatever way they can. I don't really know how to take someone preparing for the continuation of life after my death, which absolutely makes sense for people to do. Reminds me of a poem, "You are the tower the world runs out of"...

    2. Here's the whole poem. Where was I? Before I discovered poetry?

      Elegy on Toy Piano
      By Dean Young

      For Kenneth Koch
      You don't need a pony
      to connect you to the unseeable
      or an airplane to connect you to the sky.

      Necessary it is to love to live
      and there are many manuals
      but in all important ways
      one is on one's own.

      You need not cut off your hand.
      No need to eat a bouquet.
      Your head becomes a peach pit.
      Your tongue a honeycomb.

      Necessary it is to live to love,
      to charge into the burning tower
      then charge back out
      and necessary it is to die.
      Even for the trees, even for the pony
      connecting you to what can't be grasped.

      The injured gazelle falls behind the
      herd. One last wild enjambment.

      Because of the sores in his mouth,
      the great poet struggles with a dumpling.
      His work has enlarged the world
      but the world is about to stop including him.
      He is the tower the world runs out of.

      When something becomes ash,
      there's nothing you can do to turn it back.
      About this, even diamonds do not lie.

  3. love your photo of the roof top and CK is brilliant.

    I am down here with Chris and think that Life is like a box of's a crap shoot.