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 Nov 16, 2016
A year ago today I had my first breast surgery (a lumpectomy and reduction). A week ago today I had what I fervently hope is my last breast surgery (tweaks to finish the DIEP flap reconstruction I had back in June). So I have been this new, smaller-breasted person for a whole year now. It still feels strange and unreal, though I’m finally getting more used to it. Being done with the reconstruction also brings with it a mixed set of feelings: on the one hand, “yay, that’s it, I’m done!”, where I’m happy to finally be through all the trials and tribulations and relieved to be relatively pleased with the results; and yet on the other hand, I also am feeling “oh, that’s it, I’m done?”, where I’m realizing that the form I’ve got now is what I’m going to have for—God willing and the creek don’t rise—the rest of my life. And it isn’t perfect, as it never is, but whatever my minor disappointments, now I must begin the journey back to body acceptance and self-appreciation all over again. Having done body acceptance work slowly but surely for decades already, it’s a little disheartening to have to do it again (and so relatively quickly). Do it I shall, with as much focus on the silver linings and bright sides as I can manage, but today is an anniversary where I mourn, just a little, the way things used to be back before I was a “modified” human.
The other thing that I’ve been mulling over the last few weeks (in between all the election hoo ha and the emotional rollercoaster that has created, which will have to be another post), is the “now what” feeling of existential angst that I mentioned in the last post. Other than the next 5-10 years of prophylactic hormone therapy, I am officially done with the active phase of my treatment. I'm excited about that, oh hell yes I am...but I am also feeling a little discombobulated and lost. I feel like a wild animal in a catch and release program—I got caught, I thought I was going to die, but now here I am thrust back out into the place where I started (more or less) and not sure about how safe it really is anymore or whether I truly belong there. Don’t get me wrong, I vastly prefer it out here to back in captivity, but I’m uncertain about what to do and where to go next. I guess I’m just going to have to put my focus on the first half of the “patient patient” moniker while I move away from the second, and see what this crazy, complicated, contradictory, unpredictable, and ever-interesting universe throws my way next.