Posted by: julia
on Jan 28, 2016
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.
Posted by: julia
on Jan 22, 2013
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.
Posted by: julia
on Feb 16, 2011
Might as well start blogging again with a bang, rather than a dribble. I’ve just had a couple of really interesting, deep experiences that need to be processed for posterity; they’re too important to just let float away down the river of memory.
What happened? Well, twice over the last couple weeks, I stood guard over a dead body.