Monday, July 8, 2013

Emerald City of brain organization: 11 days to day 0

When medical events pelt me like sleet, I keep my chin tucked to my chest and try to move on autopilot. I've been in a blogging rut lately, thanks to the madness lately. I have ideas but can't flesh them out or separate them enough to see them clearly. This morning, I will start with an update:

I got the call to come back to Seattle a scant four days before I was supposed to arrive, before my Medicaid was done transferring to my new state of residence, six weeks into living half out of my suitcases and being laid up and feeling rotten. The Medicaid spend-down stunting my active status gave me an extra week of delay, for which I was grateful because I had no way to get everything together in time otherwise. I had another biopsy on Tuesday and an angry migraine Wednesday and after a few days of R&R I feel better. Almost ready to go. This week I will finally get my Hickman line and a few days later I will start my chemo. The transplant is scheduled for the 19th. When I am done in the hospital, I will move into a long-term patient housing apartment with its own kitchen, washer/dryer, actual bedroom, and access to a rooftop healing garden. It'll be August by then and a good time to hang out on the roof, in a chaise lounge with a book, hanging baskets and vine plants for shade.

My eyelids are finally heavy, so I'm going to save this and come back later. I promise.


It is twenty-four hours later, just a little after 12:30 am. The obvious slacking off that has happened here in this blog is due to a number of factors. I have been overwhelmed the the number of administrative, housekeeping, and self health tasks under my responsibility; I have been having vertigo and migraines and random waves of nausea, all of which can be caused- and exacerbated by the stress of being a mostly in-bed patient who suddenly has to turn the slow-moving wheels of her life into speedy little skate wheels; my mind is a dense, wooded landscape in which there are widow maker branches, bitey snakes, tangled underbrush, a cool stream off into the distance where I want to set up camp, and a bit of sun here and there that filters through leaves to make haloes around important-seeming trees. It is hardest of all to talk about my mind forest, to make sense of it all in order to convey to my loved ones that it's not exactly fear that has me quiet, but a lot of thoughts with no real trail. I want to sort it out while I still have a few peaceful-ish days to think it through. There are notions I want to share, part to amuse, and part to try to keep my arrow true enough to compensate for a little shaky aim.

I want to talk to everyone about trying on an attitude of kindness and gratitude. Being more kind, polite, thoughtful. Telling people you notice when they are doing or expressing or anything in a way you like. "Thank you for the tea, Charlotte. I appreciate the way you always make sure there is a saucer down for the tea bag." "I'm glad we had this day together, Bertrand. You are good company and the way you talk makes me think and smile." "Thank you, dog friend, for putting your chin on my lap. You communicate your needs in a way that is both obvious and sincere." "Thank you, me, for tidying up the apartment just because and not because you must hide the shame of your messy ways from your friends." "Child family member, you are doing a great job expressing yourself through your crazy dance. Thank you for being mindful of our faces and privates while you flail about." I am serious about this. It's so easy to look at someone and see what they are doing or how they are being in some fashion that is not our personal ideal. It's even easier to look at a situation we are in or are observing and weave blinders out of the elements that are not readily pleasing, stimulating, or comfortable. Those are the elements that lay groundwork for experiencing joy, satisfaction, and pleasure, none of which make it through the negativity blinders. We don't always know we are doing it, but left unchecked we allow ourselves to miss the ephemeral moments that soften and warm our experience as mortal beings in this hazardous environment we inhabit. I'm just a new thing on the planet at 30-years-old, but life so far has taught me that earnest kindness and gratitude over time enhance our daily experiences and can take the razor-sharp or grit-rough edges we bump into and turn them into discomforts or tolerable pains. I want to talk more about this another time when kava tea and sleepiness aren't here to make me get all Super Granola Lady on you. Another post, maybe tomorrow.


Adam Corolla and Dr. Drew Pinski were a reliable source of even-handed, realistic advice on sex, relationships, dealing with past- or on-going trauma, health concerns, and just about anything else you wanted to know about but weren't sure who to ask. Back in the mid-late 1990's, their radio show guided a lot of youth (and adults!) within syndicated radio range through confusing, embarrassing, scary times and gave us all information our parents and gym-teachers-doubling-as-health-teachers either didn't have or didn't want/know how to share with us. I was glued to my little clock radio from 10pm-midnight, Sundays through Thursdays all the way from eight grad through high school just to listen to Loveline and get the scoop on what was really going on with safe sex. Just by listening to other callers' problems, I learned I should not sleep with the 18-year-old trying to get into my leotard when I was just 14; I should know how to properly put on a condom because a lot of guys my age didn't; neither time I was raped were my fault, no matter how the perpetrators tried to convince me otherwise or how our peers responded by calling me a slut; if the people I date keep treating me poorly, I need to stop and reassess, work on myself a bit, and then date someone less "exciting" and he will probably/hopefully treat me right. All this from a call-in radio show hosted by a fairly juvenile "everyman" and an intelligent, kind, board-certified physician and addiction medicine specialist.

Adam now has his own podcast network, including a show he shares with Dr. Drew to "get the old band back together." Most of the time I love to hear their banter and the way their relationship has evolved, but occasionally it is glaringly obvious that Adam (and to a lesser extent, Drew) has become pretty out-of-touch with the way things really are outside his fancy house in Glendale, CA. I want to talk more about this another time when I am more awake.


One more thing I want to make sure I address is how blessed I am to have amazing people in my life. My family, friends, former bosses and coworkers, even children of acquaintances have been keeping my mind on the stream and the sun and out of the tangles of brambles and brush. But first, sleep.

No comments:

Post a Comment