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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 blog in which Our Heroine records, reflects and wrestles with meaning. With lots of asides.
Tags >> death

Pink Heart at sunrise before strikeSunday 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 together all year and so enjoyed all week comes apart so rapidly and irrevocably, and then is just gone, poof, like it was never there. (Yes, yes, we carry it in our hearts and in our memories, but at least for me, that dismantling always carries a shot of grief in it.)

So we woke up and put on our work clothes and reported for strike at 7am, and everyone started pulling things apart. I started by taking down the Gifting Wall and all the necklaces that had been left there with words of love. I distributed the ones that had been written on to as many Pinkies as I could find who didn’t get one yet, and then put the ones that were left with the blank ones that were left back on their sticks and in a box to give to Karpo (along with the sign explaining the ritual) to take with him to Youtopia (the San Diego regional that is happening in October), where they will hopefully be distributed. After that I helped with a wide variety of schlepping and disassembling and mooping, until it got to be the hottest part of the day and I had to rest for a bit. Some people were hardcore and kept working through the heat but if there’s one thing I think this burn was about it was self-care tests, so I decided this was not the time to be hardcore. Cookie was amazing and kept feeding us all, and that was a huge help. At one point we had to figure out what to do with the lost and found that had accumulated in frontage over the week, and there was the opportunity for a few playa scores (Kat was nice enough to cede a cool furry vest that we both wanted to me, which I’m pretty stoked about...and we didn’t even have to take it to the Thunderdome to resolve).

Pink Heart frontageI also remember at some point that day having a conversation with our campmate Lionessa and a few other Pinkies about the news we’d heard that someone had committed suicide the night before by jumping into the flames of the Man burn. Lionessa had been on the perimeter and close by. She watched the whole thing happen, including the heroic efforts of the firefighters who tried to get the guy out of the fire but were unable to save him, and she was pretty upset and traumatized. I don’t want to speculate on why someone would do such a thing or pass any sort of judgment except to say that his decision to do something so spectacularly and selfishly rash traumatized a whole lot of other people, and that is a bummer with a huge ripple effect which is still playing out in the burner community. (And once we got home, that tragic death was all anyone wanted to ask us about once they heard we’d been at Burning Man.)


Every year for the last 24 years I have used my birthday as an opportunity to reflect back on an experience that loomed large in my personal biography: my diagnosis with Hodgkin’s Lymphoma on the day of my 23rd birthday. (You can read past blog entries about it here, here, here and here.) It has been a good practice, a cyclically occurring opportunity to ever more deeply appreciate and commit to the hard-won lessons and transformations that that moment birthed for me, and to the person I’ve become. I’ve also used it as an opportunity to enthusiastically remind myself that I am still here, and that no matter how chaotic or tragic life sometimes feels, it beats the alternative. Life is complicated, yes (and it grows ever more so as I age); but it is good and I am glad to be still around to appreciate it.

Ah, but this year is a particularly complicated and emotionally-mixed birthday. I can’t celebrate my “still here, fuck you cancer!” anniversary with the complete, 100% positive feeling of victory that I used to...because here I am again, dealing with cancer (and not even close to done with this phase yet). And it’s a bigger threat this time: the treatments will not be so easy to get through, and the overall narrative feels like it has escalated closer to pessimism (because the second time you have cancer you are in a different story than “I had it once and I beat it”). There is a more urgent sense of existential angst and fear of the unknown that is back again now after having finally been beaten back by decades of watching the cancer experience slowly recede in the rearview mirror. It’s scarier than I remember. In fact I think this is the most consistently anxious and scared I’ve ever been. I'm trying to stay emotionally open and "keep it 100", but it's both difficult and humbling.

In addition, this particular birthday marks a sort of last hurrah or farewell to my “normal” life for a while, since I start chemo treatments tomorrow and that is going to be a tough row to hoe for a while (not to mention the recovery from the double mastectomy to follow). So it was important to me to celebrate as fully and joyfully as possible by doing as many of the things I love as possible. I’m happy to report that I was pretty successful at that celebrating stuff...successful enough to have delayed writing this blog post for close to a week. I ate delicious food with people I adore, I got all dressed up in fabulous outfits (twice!) and played amongst the art with friends at the Edwardian Ball, I saw amazing acrobatics and listened to excellent music, I talked and laughed and processed with my peeps. It was as good as a birthday gets...and possibly even a little more sweet than usual given the knowledge that it represented an ending of sorts.


It’s that day again: my birthday, which is also my cancer diagnosis anniversary. (My 21st anniversary, for those of you who care to follow along.) After last year’s big 20th anniversary, this one feels quieter (though no less celebratory). But still, I’m glad it’s here, this anniversary. It’s a terrific birthday gift: every year on this day I get a reminder to examine my “origin story” of how I became who I am today, by reflecting on this important episode of my life. I get the opportunity, again, to reaffirm the lessons I learned and sometimes even to learn something new, or at least to spice up the core epiphanies with some interesting new flavor combos. I am incredibly grateful to still be here, another year later, enjoying this gift.

21 years out, I find that the whole cancer story is starting to take on the feel and the characteristics of legend or myth. By that I mean that most of the specific, gritty, sensory details have faded away, except for a decorative few (the discombulation of waking up from general anesthetic with a tube in my nose; the indignity of lying on the bed of a radiation machine while someone manipulates my body; the tattoos and sharpie marks on my skin that indicated the boundaries of my radiation fields; the cool, steely fingers of the radiation oncologist when she examined me...I could go on but I won’t.) But as with any good legend, the skeleton of the story is preserved: the bones of what happened when, of what the results were, and what the moral(s) of the story were. Each year I study the story skeleton like an anthropologist studying a fossil, reporting (at least to myself) on the way that this bone attached to that one, theorizing how a tug on that bone led to a corresponding motion over there, and how the whole organism evolved into the next stage. 

With everything stripped down to the essential bones, it’s easier to see the lessons. Here are some things that cancer taught me that I’ve been thinking about today (I’m sure there are more; this is just today’s/this year’s musings):

  • Cancer or any other serious illness can actually be a gift (it was to me). As I often said during the experience, it’s certainly not a preferred path to enlightenment, nor one I would wish on anyone else, but it is one--and it helped crack me open and let the light in at a precociously early age.
  • Life is uncertain. Just when you think you’re in a groove, something will disrupt your groove. Learning to dance with disruption at least lets the rest of the groove continue.
  • Priorities really do become clearer when you realize that you may not have as long to stay on this earth as you thought you would. That clarity can be re-invoked at any time.
  • It is very easy to take one’s miraculous body and continued good health for granted. Appreciate what you have while you have it, but grieving for what’s gone is appropriate (and helpful) too, as long as it doesn’t prevent you from moving on.
  • Illness is at its core a private experience. Others can empathize and support, but what is happening to your body is yours alone. Your reactions to or feelings about what is happening to your body are also yours alone.
  • Optimism and humor may or may not be curative in and of themselves, but they certainly make the whole experience more bearable (for both self and others).
  • It is important to insist on being treated with dignity and being connected with on a human level even when embroiled in the midst of routine, repetitive, institutionalized tasks.
  • Always bring your own bathrobe to medical appointments. It’s wayyyyy more comfortable and dignified than the paper disposables or ill-fitting cloth ones. And there’s no reason not to.
  • I am pretty darn brave in the face of personal threat, both physical and psychological. Recalling that bravery has helped me respond similarly in other, less dire situations.
  • Allowing others to help you is a gift you can give that gives back to you.
  • You are not only your illness, but illness is an excellent opportunity for identity work nonetheless, because it really does cause you to examine everything you currently think is part of you.
  • I’m ok with dying. Really I am. I certainly hope I can put it off as long as possible, because I have a lot of things I want to do and enjoy still, but I’m not afraid of it anymore.
  • Serious illness scares people. They don’t know how to respond to the person who is ill, especially over time or after the initial episodes have passed. Having compassion for other people’s fear makes dealing with their sometimes insensitive or rude reactions much easier. But still: you don’t have to deal with anyone else’s reactions if you don’t want to.
  • Sometimes you just have to (literally or metaphorically) lie there and breathe. Nothing else is expected of you; nothing else is needed. Movement will resume in good time.

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