Posted by: julia
on Mar 25, 2017
Not that I always make excuses for not blogging as a way to start a blog entry (ok, fine, so maybe I do), but I haven’t had much time or spoons for blogging this past month or so, because I’ve been so busy going to various community events. Over President’s Day weekend our family went to DunDraCon (a gaming con with lots of roleplaying games that we’ve been going to pretty consistently since 2009), and then the week after that I went to Pantasia (a handpan gathering that I went to for the first time last year). Then a couple weeks after that I went out to Stinson Beach for a writing retreat and then to FOGcon (a writer’s con that I’ve also been going to since its inception in 2010, with the exception of last year during my chemo treatments). Going to three different big events which correspond to three different identities for me (and which represent three different communities I belong to) has gotten me thinking about how being a member of multiple communities has been a constant refrain in my life. And since this is my solipsistic playground, it made me want to write a blog post about it. So here are some thoughts about being multi-communal (is that even a word? It is now.)
Without going into too much analysis of what makes a community (a group of people organized around similar interest and/or activity) or what counts as community involvement (going to events, participating together in activities, talking about said activities, getting to know people in some amount of depth even outside the shared activities), I’ll say that I participate in and feel like a member of the following communities:
- SFF writers/readers
- Burners (and specifically my Pink Heart “PHamily”
- Handpan players
- Dickens Faire participants (and specifically Paddy West)
- Rodef Sholom congregants (and these days, specifically the Chevra Kadisha and the Board of Directors)
- Dixie District parents
(There are other events I regularly participate in; in addition to regular friends and family events and holidays, there are gaming cons, Maker Faire, Edwardian Ball—this one is kind of a mashup of the Faire and Burner communities for me—book group, etc. There are also groups I am loosely a member of: high school/college alumnae, Appleberry/Marinwood neighborhood, Marin School parents, etc, but these aren’t quite at the level of community for me yet. I feel fondness for the people who participate in those activities or are members of those same groups, but I don’t feel like they are “family” in the same way as I feel the others are. And yes, “family” is a whole other round of definition that I’m going to dodge here.)
Posted by: julia
on Feb 10, 2017
I’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%.)
Posted by: julia
on Jan 28, 2017
I’m a few days late getting this traditional birthday blog post up this year, because there was a lot going on for my birthday and then I got sick (which I refuse to take as an indication that I overdid it around the birthday shenanigans...it is after all seasonally appropriate and I have been around a lot of people). Today I’m finally feeling better though and ready to contemplate this dual anniversary as I do every year and see what it feels like this time.
For those just now coming to the party, my birthday is also the day I got diagnosed with cancer...the first time, back when I was 23. That makes this year my 25th anniversary of the day my relationship with my body and my mortality abruptly changed. 25 years is a nice round number and worthy of celebration, though it would feel nicer (and more victorious) if there hadn’t also been this new diagnosis and cancer saga part 2 that I have been dealing with for the past year-plus. It’s become interestingly complicated to do this yearly philosophizing now that there are two cancer-versaries to contemplate, but I still like the dramatic dichotomy that this day of transitions from one state to another (from unborn to born, from healthy to ill) presents.
I do still feel a sense of victory, of having made it this far after the initial shock and upset of that first diagnosis. But that sense of victory is tempered now with the reality that life is complicated and the lesson that victory often comes at a cost (which sometimes takes a lot longer than expected to manifest). I can no longer see my life as divided into only three phases, pre-cancer, cancer treatments and post-cancer survivorship—my survivorship status is now no longer something I can confidently assume will not change, since it already has changed once, from cancer survivor back to cancer patient and then back to survivor again. Don’t get me wrong, I’m humongously grateful for and pleased at being back in the survivor identity after a tough second go-round, but the very fact that the pendulum has swung back and forth between having and surviving cancer an additional time makes me have to acknowledge that it could certainly do so again. (In fact, it is more likely to do so again than it once was.) I have to constantly be able to hold two possibilities in my head and heart: on the one hand, that I am free, that I have fought the good fight and triumphed and cancer has once again vanished from my body, never to return because we have salted the earth quite thoroughly (and will continue to for years to come, just in case); and yet on the other hand, that treatments for cancer can sometimes cause cancer, as they did in my case, and that my body seems to be a fertile ground for cancer (as evidenced by it popping up at least twice now that I know of), so even though we have done all we can to prevent recurrence, I cannot be certain that it won’t happen. Holding two opposite things simultaneously and being comfortable in that “gray area” of uncertainty is something I learned to do back in the first go-round with cancer, but now I’ve had a chance to repeat the lesson and it is even more nuanced and complicated. I would say that the ability to live in the gray is one of the hallmarks of maturity, so I guess I would also say “yay me” that I have made it far and long enough to even mature.