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  • Radical Rituals at B ...
    This year I’m
    doing something
    different than my
    usual tradition of
    pithy punch list of
    lessons learned to
    wrap this series of
    entries up.
    I’m writing
    this last entry
    exactly two weeks
    after we got home
    from the burn, b ...
    Readmore...
  • Radical Rituals at B ...
    Monday morning I
    woke up early and
    decided that I
    wanted to do one
    more personal ritual
    before we had to
    break down and pack
    up our yurt and load
    the truck and leave.
    So I took my handpan
    and one of our
    little chairs and
    walked ou ...
    Readmore...
  • Radical Rituals at B ...
    Sunday is always a
    tough day at the
    burn because we have
    to strike
    camp—it’s
    tough physically of
    course but
    it’s also
    tough emotionally
    because it feels
    like the setting and
    the vibe we worked
    so hard to put toge ...
    Readmore...
  • Radical Rituals at B ...
    Saturday was my only
    day with nothing
    pre-planned and
    nothing I had
    committed to do. The
    burn was almost over
    and I was starting
    to feel nibbles of
    FOMO (Fear Of
    Missing Out) so I
    was determined to go
    see some more art
    (especially ...
    Readmore...
  • Radical Rituals at B ...
    Because I had
    actually gotten
    enough sleep, I woke
    up reasonably early
    on Friday morning.
    Josh was still
    asleep, but I wanted
    to take advantage of
    the relative
    coolness of the
    morning and go do
    something. So I
    decided to take my h ...
    Readmore...

Parentheticals

A short description about your blog
Tags >> cancer

closeup of the Man at night inside the pagodaThis year I’m doing something different than my usual tradition of pithy punch list of lessons learned to wrap this series of entries up. I’m writing this last entry exactly two weeks after we got home from the burn, because it’s taken me that long to find the time and the energy to write all the previous entries and frankly, I needed a little time to let the lessons and themes clarify and precipitate out. People keep asking me “so how was Burning Man?” and my answer has been pretty shallow (“it was really great and really hot!”) because how it truly was and how I felt about it requires a much more complicated and layered answer and most people really don’t want to stick around to hear all that (but if you’re bothering to read this, maybe you do so I’ll tell you).

So how was Burning Man?

I enjoyed it overall, despite some discomfort with the heat and a few times of crankiness or upset with Josh. I spent some excellent quality time with familiar and unfamiliar PHamily members and felt I had a place and was valued, but didn’t get a chance to go transformatively deep with anyone. I was able to formally express my artist and musician identities by doing my Fly Your Freak Flag High workshop and the Radical Love Ritual and by performing on stage with my handpan at Center Camp, and those things were successful and made me feel recognized and appreciated, at least in a modest way.


MucaroI squeezed in a few hours of sleep on Thursday morning, and then blearily got up and changed into my pink outfit and tried to get myself together to go on the pink ride. Josh was anxious and bugging me about being ready on time and I felt rushed and cranky from the heat and the lack of sleep so we wound up fighting with each other in one of those classic playa breakdown moments. Unfortunately the Pink Ride wound up leaving without us and Josh didn’t want to go try to catch up to it so we stayed at camp and argued some more until we worked it out, and then decided to go out to the Temple. On the way there we stopped to see Mucaro, which was a big wooden owl sculpture that on the inside was an unexpectedly sweet tribute to teachers and education. Earlier in the week you could climb all the way up and look through the owl’s eyes out at the playa, but by the time we got there on Thursday the upper part of it was closed off, apparently because someone had fallen and hurt themselves. (There are a lot of potentially dangerous ways to hurt yourself out there at Burning Man if you’re not careful, and many people are, shall we say, not their most sober and careful selves while they’re there. It’s always a bummer when someone hurts themselves, but it’s also a bummer for those of us who then lose access because of someone else’s carelessness or disregard.) Still, it was pretty cool, and beautifully built.

What I wrote on the TempleOnce we got to the Temple, Josh and I split up. He had some heavy processing to do about his Dad’s illness and decline, so I gave him some space and went wandering around feeling my own feels (not to mention those of the hundreds of other burners that were there feeling their own feels or the thousands who had already been there and left their emotional residue hanging about). I had a box of forgiveness letters that my friend Eileen (who leads beautiful workshops and retreats focusing on Forgiveness) had given me to place at the Temple to be burned, so I did that first and then I came upon a guy doing some sound healing with crystal bowls and hanging chimes, so I stood there for a little while listening to that. During and after that I let myself do some quiet reflecting about the time I’d spent at the Temple last burn trying to process my Year of Living Cancerously, and how far I’d come and how much better I felt since then—although I also had to reflect on how much was still hanging around messing with me, and how much more complicated and time-consuming both healing and grieving were turning out to be. I still wasn’t feeling totally comfortable with my new, “modified” body, and struggling with the ways in which parts of me still felt “broken” or shifted away from how I once was, and with how I wasn’t “done” with the cancer experience, even though I was supposedly physically healed. I wrote a couple more things on the Temple walls (“Fuck off cancer and never come back” and “Hey boobies, I still miss you”) and then I sat for a bit and just let the feels wash through me.

Temple 2017While I was sitting there I was noticing a lovely older woman with a massage chair not far away from me giving out massages to people, and I started thinking about how I would love to have a massage (which is one of the regular tools I use for self-care at home) and maybe if I went closer she would notice me and offer me one. Then I thought to myself “hey, if you want to take care of yourself, be proactive. Don’t wait for others to see you want or need help, ask for what you need.” So I went over to her and asked her if I could be next. And she said “sure!” I felt pretty good about that (and it was a lovely massage). Josh came by and found me just as I was about to sit down on the chair, and he patiently waited for me to be done. After it was over I thanked the masseuse (whose name I am forgetting) and we left the Temple in a solemn, quiet mood.


Spoonless in San Rafael

Posted by: julia

Danger: Spoon ShortageI’ve been thinking a lot about Spoon Theory lately, which made me realize I’d never talked about it here on Parentheticals. For those who don’t know, Spoon Theory is a metaphor used by the disability community to explain what it feels like to have a limited amount of energy available for basic tasks of daily living and how it is more difficult to replace or regenerate that energy if one is dealing with a disability or chronic illness than it would be for others. (A “spoon” in this metaphorical sense just refers to “a unit of energy”, not an actual eating implement.) People use this metaphor to express various ideas about having energy, running out of energy, safeguarding one’s energy, spending one’s energy, etc. So one might say, for example, “I wish I could go out to that event tonight, but I am all out of spoons.” Or, “It took almost all my spoons just to shower and get dressed today.” Or, “I used all my spoons up yesterday and I don’t have enough back to do that today.”

When I was going through the active phase of my cancer treatments, with all the chemotherapy and surgeries, I was definitely much more spoon-deprived than I was used to being. Of course it made sense that all the difficult physical demands of killing cancer cells and re-sculpting my body would take a lot of spoons, and it was not surprising that I found I needed to hoard my spoons and spend them only (or at least mostly) on self-care and recovery activities (however broadly or personally defined those activities may have been in my specific case).

But then I got better, and after a while the physical demands eased and I found my spoons didn’t run out so fast. I found I could go back to spending my spoons on activities and projects besides self-care and daily living, like I had been used to doing. So of course, I did. And I’m happy to report that physically, my stamina and spoon supply seems to be nearly back to normal. (If I had to estimate, I’d say I’m at about 85-90%.)


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