as a kid i made my parents read lafcadio to me over and over. eventually i had it memorized and could “read” it myself. the tone and content of the book shaped me as a person. every school year it always the first book i read out loud to my class. i think that my tolerance for the unknown comes from this book. and a good chunk of my sense of humor.

when i turned 36, i realized that 36 is double-18, and that half my life was long enough to wait for a tattoo. i still wanted the same drawing from the book in the same spot on my back – seemed like a safe bet. my grandma florence gave me some money for my birthday. i decided to use it to get my lafcadio tattoo.

i was going to be in berkeley in june. my friend sandy lived in the east bay and he suggested a tattoo spot – sacred rose. i remember that after i got it i changed my facebook status to “i am not the same.”

thanks for the rad tattoo, grandma florence!

when i got back from my trip to the east bay, my mom greeted me with enthusiasm. and with a pile of information about tattoo parlors in corvallis. back when i was 18, she had responded to my desire to get a tattoo with an admission of her own desire to get one. she had a good story about what she wanted to get – her rattlesnake pendant on her ankle. i wanted to get the pocket watch from to kill a mockingbird, and we made plans to get them together on her 59th birthday that coming september.

but plans change. soon after, i was diagnosed with a brain tumor. my mom spent part of her 59th birthday visiting me in a nursing home.

after my medical drama i started to feel a strong need to have a more visible scar. my surgery scars aren’t easy to see, and i wanted something like a badge to mark what i’d been through and survived. i decided that i needed to get a tattoo of a phoenix, because the symbolism was too good to pass up. i certainly felt like a phoenix, and i wanted to represent all of the folks who’d been a part of my surgery and recovery. it turned out that i was going to be in hawaii on the 1-year anniversary of my surgery. i found a tattoo parlor in lahaina and met with rob there. i explained it all to him and he drew up some sketches. i wanted it to be round because i knew that i also wanted to get that pocket watch on my other calf and i wanted them to balance. rob’s sketches were great, so i picked one and walked myself over to his shop (maui atomic tattoo) on august 7, 2010. i wanted it on my left leg because that’s the weak side from my stroke.

that wasn’t the only tattoo i got that day. the other was inspired by my friend robyn. in a line down her calf she’s collecting small tattoos symbolizing important events in her life. i knew that i’d be collecting theme words and i wanted to do something special with them. robyn’s example gave me the idea to collect my theme words down my back. not wanting to miss the opportunity to customize things, i decided that i’d ask someone who was really involved in my theme word to write it for me and i’d get it tattooed on my back going down my spine. i asked emily to write “new” for me. she was a major part of my recovery and really helped me stay positive that first year.

my mom and i made plans to get tattooed together the day before she turned 60. we went to high priestess in corvallis – a friend had much praise to denise there. mom went first, and she agreed with my assessment that it hurts enough so you know you’re getting a tattoo. this time i wondered what it would feel like – i was getting the pocket watch on my right calf, and as a complication from the surgeries i have no temperature sensation on that side. the answer was that i could feel the needle vibrating but i didn’t feel any pain. since it didn’t hurt, denise zipped through my tattoo in record time.

i knew that i wanted to include a quote from to kill a mockingbird as part of my tattoo. when i was in the hospital, my mom read it to me and i had her mark lines that really spoke to me, so that i could choose one for my tattoo. the one that stood out the most was “one does not love breathing.” that part – when scout is afraid that she won’t be allowed to read with her dad anymore because her teacher doesn’t like that she already knows how to read – has always meant a lot to me. but that phrase has new meaning, because now i really do love breathing. i asked my dad to write it out for me – he’s always had really distinctive printing – and he reluctantly agreed. i had denise point the hands at the 7 and the 1 – my parents’ wedding anniversary is july 1st.

i love my pocket watch tattoo. i like it when people stop me and say, “can i read your tattoo?” but after spending some time with it, i decided that there was too much open space in the middle of it. my solution was to get denise to add the mockingbird from the cover of the paperback edition. so on the 2-year anniversary denise did just that.

august 7, 2011 was a busy day for tattoos in my family. my mom got a hibiscus on her other ankle – this had been her plan to represent the two sides of her personality with balanced tattoos.

i also got my word for year two – gratitude. i asked my friend vickie to write it – she’s been in my life for a decade now and has a lot to do with that word. a bonus is that she has lovely cursive.

i’ll crunch some numbers. i’ve been tattooed in 3 states and have 7 words tattooed on me in 3 people’s writing. 2 book tattoos. 2 bird tattoos. 1 gun tattoo.

in 2011 i’ll add another tattoo to my collection – “experience” – and the jury’s still out on who will write it. i don’t know how long i’ll collect theme words on my back. i think i’ll know when i’m finished.

i really love my tattoos. i feel like there are good stories about each of them – where i got them, who i was with, what they represent, their location on my body. now i find myself drawn to people who have tattoos. i want to hear the stories behind them.

i remember being in pre-op with my cousin mark and my mom, before what would become the first of four brain surgeries.

this is me about a month before i went to phoenix for surgery.

it gets foggy after that. i have flashes of memories – moments (my mom reading me a letter) to longer stretches of time (teaching bob dole to flip the bird). i remember being transported to a nursing home – my first time in an ambulance. i remember talking with the EMT about different ways to take a pulse – i’d experienced quite a few methods during the 5 weeks i spent in the hospital.

i was also doing some major hallucinating – the combination of a brain injury and some powerful drugs. i was seeing things lurking in the corners of my hospital room. i worried about a plot my mom and dr. spetzler had to cut my head off in an MRI machine. and perhaps the strangest was that i was being told that i’d been in the hospital for over a month, i could barely sit up without help, and my left arm seemed to have a mind of its own. so at the end of the day i didn’t know what was really happening and what was an hallucination.

when i arrived at the nursing home, i was moved into an empty room. in the middle of the night, there was a lot of noise and activity in the room. they were moving someone else in. i heard someone say, “dorkus? that’s a lovely name.” now with york for a last name, the word “dork” has played a pretty prominent role in my life. so hearing the word “dorkus” over and over wasn’t helping me to convince myself that i was living in reality. i remember hearing someone else say, “dorkus is an interesting name. where did you get it?” a gravelly voice befitting an elderly woman named dorkus replied, “it’s from the bible. my father gave me that name.” i managed to stop myself from saying, “was he illiterate?”

my friend emily has a much better knowledge of the bible than i do. she told me later that dorcas is indeed a name from the bible, and a quick look at wikipedia tells me that she’s mentioned in the book of acts, in the new testament. i also just this moment learned how to spell it correctly.

ok, ok. enough biblical trivia. bring on patrick swayze.

keanu and patrick - dream team?

the next morning, dorcas had the tv on at full blast. she was watching the local news. as i tried to get back to sleep, i couldn’t help but listen. they announced that patrick swayze had died. i remember thinking, “oh i am good, but i’m not that good.” but if patrick swayze really had died, then i was really living in a nursing home because of complications from my surgeries, and that wheelchair next to the bed was really for me. that morning i stopped hallucinating and started to wrap my mind around the new realities of my life. i also made myself a promise that 10 years later i would think back on everything  that had happen and be grateful that it did, that i’d managed to use those experiences to make my life better. and i can even put a date on that decision. patrick swayze died on september 14, 2009, so that must have been september 15th.

now maybe some of that was because i was being weaned off of the powerful drugs i was taking in the hospital. but some of it was also patrick swayze. probably 60/40.

some years with more success than others. one year i vowed not to punch my friend zari in the arm anymore – that was my traditional greeting. i haven’t done it once since.

around that time i also resolved to always return my shopping cart to the corral or back into the store. being a californian, i sometimes left it in the parking lot – always tucked carefully away, of course. that was another successful resolution -since then i’ve never once left a cart unreturned.

i’ve never enjoyed cooking. one year i resolved to bake one pie a month. that resolution lasted through january. i made a lemon meringue pie and haven’t made once since. that pie was probably 12 years ago.

in 2012 i'll try making my grandma's pecan pie recipe.

soon before my medical drama, my friend harriet introduced me to the idea of picking a theme word for the year instead of making a resolution. i really like having a word as a theme – it seems to lead more towards mindfulness and away from feeling bad about not making pies. it’s a way of choosing what you want to be aware of in your life. what you want to be tuned into.

i’ve done this for each year post-stroke. my new year starts on august 7th, the anniversary of the beginning of my surgeries, so i won’t be putting a new word into effect tomorrow. but two of my friends might be.

emily’s word for 2011 was “ready” – and boy was she! this year she met jeremy and they got engaged and just this week closed on a house. their wedding is in february. emily’s thinking that “trust” will be her word for 2012.

riding the tram in portland with emily, summer 2011.

my friend t.a./bucko is also thinking about a word theme for 2012: “connect” – partially to challenge himself to look for and take opportunities to connect with folks.

bucko has the duck, i'm in the black dress.

i really like both of those words. i just might share one with them when it’s time for me to choose word 4 this summer.

year one, my word was “new” – it was an excellent choice for a year with a lot of changes. it helped remind me not to think of things as bad or good, but as new. i feel like it kept me on a positive path, observing the things around me for what they were, then moving forward.

year two my word was “gratitude” – and it was another excellent choice. that word reminded me to be appreciative of the things i have, and maybe more importantly it reminded me to verbalize my gratitude. all of which certainly helped make for a good year.

i like words, and when i started this theme-word tradition i spent some time thinking over how i might visually collect these words. i decided that on august 7th, as one word was traded out for the next, i’d get the outgoing word tattooed on my back, centered under my tattoo of lafcadio (from my favorite children’s book). i decided that i’d ask someone who was really involved in how that word played out to write it for me and then i’d get it tattooed in their handwriting. i asked emily to write “new” and my former foster daughter’s grandma vickie wrote “gratitude” for me. i like the idea of having a map on my back of the road i’ve taken since my medical drama.

it’s year 3 and my word is “experience” – i chose that word for a few reasons. the first two years were really focused on recovery, and because of all the work that went into those two years i’m now able to do so much more, to have experiences. also, around the time of my 20 year high school reunion this year i realized that i really value people who have experience. the jury’s still out on who will write “experience” for me – over 8 months left.

someone recently asked me what will happen once my back is filled with words. my answer was that at some point i won’t feel compelled to do it anymore and i’ll stop. now it occurs to me that maybe my theme calendar will be like the chinese zodiac and after whatever year 12 is it’ll be the year of the new again. time will tell.

if you’re making a resolution this year, i wish you success. if you’re picking a theme word, i’d love to hear what it is and how it works for you. i’m always looking for inspiration for year 4.

above all, i hope for a great 2012 for all of us.

me and zari way back. this year i got to see her graduate from college.

7 or 8 years ago, we made personal soundtracks and exchanged them. these are the soundtracks if there were movies made of our lives (we’re both wes anderson fans, so i’m guessing that his movies were the inspiration). not necessarily our favorite songs, but songs that are meaningful to us for whatever reason. it had to all fit on one cd. we made them and exchanged them.

zari's first soundtrack - she was in high school when she made this.

it occurred to me that it would be a good exercise for the new year. so the first new year after my medical drama (2010) i invited some folks to join me in the soundtrack project. i ended up with quite a few soundtracks, and i’ve enjoyed getting to know my friends a little bit better through their musical selections. i never fail to be surprised by a song or two that i find on there.

last year, kristin and i were struggling with putting together our soundtracks for 2011.

kristin and kriste working on their 1979 soundtracks.

both of us were trying to wrestle with our love of elvis costello – he was occupying a lot of disc space. we decided to make and exchange all-elvis soundtracks. i found out that kristin’s more of the ballad elvis fan, whereas my elvis taste leans more towards the kick-you-in-the-teeth 3-minute miracles. we even got to go together to see him play in 2011 – i credit the good elvis soundtrack vibes.

kriste and kristin many years later.

elvis costello, soundtrack hog

this year i’ll be spending some of the time between christmas and new year’s eve finishing up my soundtrack for 2012. i have a really great soundtrack for this year to build on. the basics will mainly stay the same, but as new songs come, others have to go to make room. that’s the only rule – it has to fit on one cd. it should matter to you – this isn’t the soundtrack to anyone else’s movie. if you love hanson then they better be on your soundtrack. the order of the songs matters. and you have to actually burn the cd – no links to playlists allowed. ok. i guess that’s more than one rule.

i highly recommend that you give the soundtrack project a try. it’s a very cool way to make a musical inventory of your life – it can take a pretty amazing amount of self-reflection, and it’s an interesting way to get to know someone. recruit a few of your friends and swap ‘em. and let me know if you want to trade with me.

i’m currently listening to zari’s first soundtrack. and wondering what has survived the years and will be on her 2012 soundtrack.

i think that being an only child is a big factor. now, i know what you think about only children – that their parents cater to their every whim. i think that that’s one kind of only child, and i’m another – my parents mostly dug having me around when i was a kid but they also had their own lives, and they expected me to be able to entertain myself. some childhood highlights are writing and filming super-8 movies, endless scavenger hunts, and the “children’s craft fair” my friend tammy and i put on (with help from our families). i was fortunate to have a cool big backyard and to grow up somewhere where i could ride my bike and walk around by myself. i had lots of benevolent neighbors on my block, and the fabulous two strike park was just down the street.

also, as a former elementary school teacher and foster parent, i know that i should be prepared. i always have a book with me, and paper and a pen so i can write a letter. i often have my quiddler deck and a pad of madlibs in case there are other folks around to join me in my fun.

as an adult, i think that i continue to make steady progress in the making your own fun department. here are a few examples:

psychic greeting card

this game was invented with an ex while we were waiting for a flight at the portland airport. the gift shop had a rack of greeting cards. we separately went into the shop and picked a card from the rack, trying to intuit the card the other one would choose. we wrote notes on the cards and exchanged them.

now i play psychic greeting card with my friend molly. we choose a theme – the most recent one was “embarking on a new adventure” – and then on the same day we each go to a card store (she’s in california and i’m in oregon) and intuitively pick a card.

molly's most recent psychic greeting card is on my fridge.

bingo

i like to make bingo cards. when i’m in a frustrating situation, making a bingo card makes me feel better. i’ve made bingo cards for staff meetings, for a class i took with an especially awful instructor, and for many inservice trainings. yes, it’s passive-aggressive, but it’s a victimless crime. i have a reason to stay interested (i’m rooting for my coworker to say, “we tried that 30 years ago and it didn’t work” because that gives me 4 in a row) and i don’t revert to my default middle schooler mode of smartass. so really, everyone benefits.

you realize of course that you may never make a kriste bingo card.

bingo cards can also be used for good. my 3/4/5 grades class made bingo cards before we went on a hike – we brainstormed things we might see. yep, some kids figured out that they could arrange dirt, grass, a stick, and the sky, all in line with the free space, and more power to ‘em. my friend zari and i once created a very complete game of “late show bingo” out of our love for david letterman. i found the cards when i cleaned out my file cabinet this spring. good times.

a lot of good stuff here, but "dave smells the guest" might be my favorite.

dinosaurs

when i was teaching primary multiage, i had a student i’ll call pedro. pedro drew a picture of a dinosaur with someone in its mouth. he elbowed the kid next to him, pointed at the mouth, and said “that’s you.” the school leadership leaped into action. i was asked if we should fear violence from pedro. my response was something like, “yep. if pedro has a dinosaur, we’re in a lot of trouble.”

my coworkers and i decided that pedro had a good plan – drawing pictures of our enemies being eaten by dinosaurs was a pretty good way of relieving stress. melanie uses the technique during grading periods:

jaqui has used it as a frustration-management technique with her middle school students:

jaqui's dinosaur-inspired art.

i once enlisted another student’s help in drawing a picture of melanie.

i think that "wha! mommy" was a nice touch.

drinking games

drinking games are similar to bingo cards. in my twenties i made a drinking game for the tv soap “all my children” – i don’t think that i ever played it. the fun was in coming up with it. i enjoy saying, “we should make a drinking game for this” when confronted with frustrating situations. i’m making a drinking game about a frustrating meal that i regularly eat (the kids call that “vaguebooking”). this year i was at a high school graduation with my friend vickie, and during the reading of the names of the graduates we came up with a drinking game. we decided that you should drink when someone has only two names, or four or more names. laughing about it got us through this year, but i’ll come prepared if any of you invite me to a graduation ceremony next year.

make a shirt about it

i like to make iron-on t-shirts. i’ve been known to make a shirt with a quote about someone i’m frustrated with and wear it under the rest of my clothes when i have to interact with that person. i think that i feel a little like what clark kent feels like knowing that he has his superman duds on under his suit.

this is the best shirt i've ever made. velcro letters so i could change the first part. perfect for intimidating opponents.

names/branding

having a cool name for whatever fun you’re making is important (see psychic greeting card above). my dear friends and childhood neighbors the charnows know this. michael’s hatred of celery has led to an annual party called celeryfest. madalaine had the idea to make an outdoor bowling alley. we came up with a name – the midnight bowlers – and made a portable bowling kit of 10 real pins, a bowling ball, and a long strip of astroturf for the lane. we’d load it up in the car and practice random acts of bowling.

scholars believe that these were the first midnight bowlers.

eventually there were several chapters of the midnight bowlers – “it’s always midnight somewhere.” michael gave madalaine a bowling-themed pinball machine. erin painted captain underpants on a bowling pin for me – it’s currently proudly displayed on my mantel. i sometimes bowl on sunday with friends – we call it the church of the ten pins.

oh. now i see why my grandma called my hair a rat's nest.

card games

when i taught 4th grade, i realized that i had a captive group to play card games with. i like the social skills that can be modeled and practiced during a good card game. and the shared experience of playing a game with a group of people. my two favorites are spoons and i doubt it (you might know it as b.s.).

"do we really have to play i doubt it again, ms. york?"

around that same time, i was developing a serious quiddler habit. quiddler is a card word game – kind of like scrabble but played in rounds and with letters on cards. it’s really, really a great game.

madalaine goes ultimate in quiddler.

now i’m loving apples to apples. if you ever see me with a group of 3 or more people, i’m probably thinking about how i can convince them to play apples to apples with me.

here are a few pros making their own fun:

i guess that the moral is that you can’t always depend on other people to make your fun for you. sometimes you have to make your own. and the more you practice, the better you’ll get.

i have been feeling not great for the last 6 weeks or so. flare-up of my neurological symptoms – coordination’s off, crazy-dizzy, wonky arm is worse, much more easily and quickly fatigued. my neurologist here in corvallis sent me for blood work, x-rays, and a CT scan. they all looked fine.

the imaging department at my local clinic has rad 3 arm hole gowns.

next i saw my neurosurgeon in portland. i had an MRI and more x-rays (and let me say here that there are some good folks working in the imaging department at providence st. vincent medical center). he showed me the scans and said that if anything, things look a little better in there than my last MRI in february. i have a collapsed right ventricle and a shunt that drains it through a tube to my stomach. i don’t know how it works and i don’t really want to. installing it was the 4th brain surgery i had back in 2009, and it’s weird enough that i have this thing implanted in my head. i don’t need to know how it works.

yep. your brain has ventricles.

then he manually checked my shunt. it’s all inside my skin and is adjusted with a magnet, but what feels to me like a bump under my skin behind my right ear is actually a way that you can check to see how it’s working. he messed around with it for a bit and said that it isn’t draining properly. so my brain seems to be doing more of its own thing. but is it doing enough? dr. gore (that’s my neurosurgeon) said that he wanted me to go for a lumbar puncture. i said, “they should really come up with a better name for that.” dr. gore said, “they did. spinal tap.”

i studied for my spinal tap – i’d never had one before – by watching “this is spinal tap” with the audio commentary on. then my mom and i headed up to portland for my appointment. i had to be admitted to the hospital (providence portland medical center). it was quick and orderly – the staff folks i interacted with were kind and professional. i was totally impressed.  i changed into a hospital gown and filled out some paperwork. a nurse put in my IV and i met the doc who’d be tapping me. they wheeled me into the room, helped me get up on the table, and i drifted off while they were talking about thanksgiving recipes and wrestling. next thing i knew i was laying on my other side and talking to my mom about who knows what. she took a picture of me.

photo credit: penny york

i was so confused. i realize now that part of the confusion was because of the last time i remember going under. it was for my first brain surgery back in 2009. i remember being in pre-op with my mom and my cousin, then there are all of these flashes and about a month later i started putting things together. so when i asked my mom what time it was and her answer was only about an hour after the tap was supposed to start, it was kind if a new sensation. i got up, got dressed, and we headed home.

if the gown had been a 3-holer i probably would have snatched it.

dr. gore called me the next day. the tap showed that my brain pressure is elevated. he wants me to see my opthamologist this month to have an eye pressure test. then i go back up to portland in early january to talk things over with dr. gore. at this point i feel like there are a couple of options. he needs to operate to replace my shunt (and i just finally grew my hair long enough to pull back!). he wants to wait a few months and see what happens. or i keep on going with a shunt that’s not working and a brain that’s trying to pick up the slack. if that’s what happens, then i’ve taken a big step backwards and i have to get cracking on recovery stuff – the good thing about that is that i’ve done it before and i know the way.

meanwhile i can make some plans for december – i was keeping it open in case i needed to have brain surgery. i’ll know more next month, and nothing i do now will change what will happen. so i’m not stressed. not investing any energy worrying about it – if i have to get part of my head shaved i’ll just bring back the cyndi lauper “she’s so unusual” look. until then, i’ll keep on living my life, even if it needs to be within a shorter radius from my apartment.

the first brian to appear in my recovery was my nurse brian.

brian threw me a cheesecake party when i left the nursing home.

the first 4 weeks after my surgery are really nonexistent or a blur in my memory. by week 5 i was starting to be more aware of what was going on. i was in 6n, which is the neuroward at st. joseph’s hospital. i had a pretty serious brain injury and was on some pretty serious meds. the memories i have of my time in 6n mainly have to do with brian. he was my nurse – it feels like for all of that 5th week but that seems unlikely now. but he was there when it really counted – 6n that week (must have been early september) was the right place at the right time for me.

i’ve written recently about how brian helped get bob dole back with the program. that wasn’t all he did. my sense of balance was basically destroyed during the surgeries. it’s improved with a lot of hard work (i feel like i’m faking it), but in those early weeks and months it was pretty much shot. in the hospital i was basically in bed all the time, and i was still crazy-dizzy. on the rare occasions that i did get out of bed, i needed help to sit up on the bed and to stand up. later in the nursing home my mom drew “horizons” and taped them up on the wall so i’d have something to look out when i was standing up, always with someone who had a firm hold on me. eventually my brain learned that when i felt like i was leaning way over to the side i was actually sitting/standing straight up – it took almost a year until i felt safe sitting in armless chairs. but back on 6n all of that was far away. brian made it his goal to get me out of bed and sitting in the big hospital chair. i didn’t want to – whenever i even just sat up i felt like i was on the teacups at disneyland. he swore that i’d just have to sit there for a minute. i finally gave in and let him help me out of bed. i got into the chair and he walked away. in my memory, he waved to me from the door and said he’d be back in an hour or so. i’m sure that there was some serious cursing and that the bird was flying from both hands – but i wasn’t actually angry, i thought it was funny. he played it all just right for me. at that time i was really struggling with trying to bring my personality into focus, and he somehow knew just the right way to do it. how did he know that? i’m forever in his debt for that. i can feel it in my chest while i type this. i was so scared that my personality was lost, but he saw it and gave it back to me. there really isn’t a better gift.

brian likely helped me get into this chair.

another brian story can illustrate how bad things were back then. i was hallucinating a lot (i remember seeing things, and sometimes thinking that my mom and my neurosurgeon were conspiring to kill me by slicing off my head in an mri machine). when i transferred to a nursing home after week 5 in the hospital i was fairly convinced that my buddy brian was someone i made up. we had talked about facebook and i remember him saying that if i sent him a friend request he might approve it. soon after i left the hospital i got a friend request from him. i made my mom read it to me over and over. that and patrick swayze (a story for another time) were major contributions to me actually realizing that the 4 brain surgeries and crazy balance and living in a nursing home were all real things.

a good year or so later i emailed brian about that friend request conversation. he said, “and do you remember what you said next?” i didn’t, so he told me, “you said, ‘uh, you just changed my diaper. i’m pretty sure we’re friends.’” i replied with, “you’re a neuronurse. do you become friends with everyone whose diaper you change? now i feel cheap.” his response was, “the only people who’ve gone from diaper-changing to friends are you and my kids.” see? amazing.

5 months after my first surgery, my neurosurgeons in phoenix looked at my mri and decided that i needed another surgery. so my mom and i packed again and headed to arizona (much more complicated than the first time – i had a lot of meds to manage and was still in a wheelchair most of the time). when i got down there, the surgeon who was going to operate decided that the surgery was more risky than the condition (a collapsed ventricle in my brain).

i'm in the green sweatshirt, waiting for tests to show that i didn't need a 5th brain surgery that week.

so the trip to phoenix was rechristened the recovereunion. the docs wanted me to stick around for some more tests, so instead of heading right back to oregon my mom and i checked out museums (a great place to test out my newfound walker-walking abilities), watched football with my cousin mark and his family, went to the zoo with our old friend pat, made a visit to my nursing home, and went out to dinner with my tumorfest speech therapist, tina, and her family. brian had been planning to visit me in the hospital, but he took me out to lunch instead. it was great to sit and visit with him (in a booth with no armrests!). just felt wonderful.

brian has even given me some very helpful parenting advice since my phoenix days. i had some difficult times with my foster daughter who i adopted, and i reached out to “my forcefield” for help. here’s what brian said: “Sometimes I remind myself of a few thoughts on chaos: Chaos creates opportunities if you can quietly observe it without being consumed by it. The best vantage point is not one of looking in from the outside; it’s best viewed from the ‘eye of the storm’ as it swirls around you. Stay detached and observe.” that has really stayed with me and has helped me get to a healthy place about what happened, and continues to happen.

the other brian is brian, my former physical therapist. i had a physical therapist, dennis when i was in the nursing home – he worked a lot on helping me rewire my brain to know how to tell when i was in a straight line. lots of standing at a railing (with him holding on to my gait belt). my next pt was anne. anne was my home health physical therapist when i got back to oregon. she worked with me in my parents’ house for a few months – she taught me how to crawl, and how to walk with a walker.

brian and his wife brittany at tumorfest 2011

then brian was next. i started seeing him when i was able to get out of my parents’ house. at the time, i was just starting to use a walker. i liked brian right away – like my nurse brian he was able to give me just enough of a hard time, and with kindness and a great sense of humor. i remember that the first time i saw him he asked me what i wasn’t able to do that i missed. i said playing wallball and hiking. he said that he’d have me back doing both of them. at the time i laughed. i was still needing to use my wheelchair a lot of the time – i couldn’t even imagine being able to do either one of those things again.

going to my physical therapy appointment was always thrilling. the folks in the office were so kind and encouraging, and brian always had interesting and challenging things for me to do. he taught me how to one-hand walk – for those of you who haven’t had to do it, the switch from two-hand walking (with a walker) to one-hand walking is unimaginably scary. but brian got me there. even to no-hand walking, but that comes later.

on my way to physical therapy early in my one-hand walking days. this is not the correct way to wear a gait belt.

i’ve learned that the match with a physical therapist is important. and once you’ve found the right match and developed trust (physical therapists – this is important! give your client/patient things to do that they can be successful with.), having an “i’ll try anything” attitude will take you far.

i think that sometimes brian had me try things for his own amusement. and why not? i was known to do the same thing when i was teaching elementary school. one day he told me to get up on the trampoline. i’ll try anything, so i got on it. this is one of those little kid ones with the bar to hold onto. i started jumping. it was an incredible feeling. i don’t think i can describe it. elation. it was one of the greatest feelings i’ve ever felt. now, as good as brian is, i don’t think that he put me up there to make me feel elated. i think he probably though that something funny would happen, and he was right. as i was jumping up there, feeling elated, i started to laugh hysterically. jumping and laughing like a toddler. i looked around the physical therapy office and saw that everyone had stopped what they were doing to stare at me. which made me laugh even more. when brian came over and said that it was time to try something else, i really wanted to punch him. i was just having pure fun. now, if someone had recorded it, it would have gone viral.

after maybe 9 months of therapy, brian had helped me get to a place where i didn’t need to go to PT anymore. i was excited, and bummed too. brian and i had gotten to be friends by then, and he suggested that we get together sometimes as friends and do what i called “physical therapy in the wild” – like once he met me at my old gym and helped me figure out how to safely use the equipment there so that i could start going back there to get exercise.

but my favorite physical therapy in the wild was the saturday when we met up at a school playground. brian’s wife brittany came along. brian finally got to put me on a tire swing. my vertigo makes everything spin to the right, and for a while brian had wanted to see what would happen if i spun to the left – would it unwind me? so i got on the tire swing and he spun me. nothing happened other than me being able to get off the swing and walk to whatever was next – not bad for a woman who couldn’t even be in the same room with a moving ceiling fan months earlier. as an elementary school teacher i’ve spent a lot of time playing playground games, and the three of us played a few. horse, four square, and even wallball just like brian had promised.

brian even took me for a wobbly but successful spin.

brian has managed to be a friend who also happens to have an expertise in something helpful to me. an example is a few months ago when i posted on facebook that i had walked 2.5 miles without my cane touching the ground. a stream of people offered congratulations and encouragement. brian piped in with something about my cane being a security blanket and that i should try going for a walk without it. i said that i would if he and brittany would come with me. we made plans to walk that weekend, and the two of them joined my grandmother and i for our traditional sunday $2 early bird breakfast special at the dive bar down my street. i left my cane at home. it was amazing to be out without it. after that successful caneless walk, i still carry a cane because it’s a marker that people need to be careful around me. but i almost never need to use it, so i carry it in my wonky left hand which leaves my right hand open to do amazing things like carry a beverage or an umbrella. and all because brian saw an opportunity to challenge me and took it.

this spring when i was able to move into a more accessible apartment downtown, i asked my friends for help loading and unloading my furniture and boxes. brian and brittany came early, brought their truck, and stayed until i was all squared away. and they smiled and laughed and chatted with my other friends who came to help. today brian and brittany are moving from corvallis to montana. and i’m honored that they invited me to have a meal and a drink with them on their last night in town. i’ll miss having both around, but i’m excited about this new step for them.

brian made good on his hiking promise, too.

in so many ways my life would have been different without these two men. they both have spots my permanent thanksgiving card list. i’m so thankful that i was in the right place at the right time so that i get to know these folks, and i’m just genuinely glad to call them my friends.

this year there were 217 people and organizations on my list. it wasn’t financially possible to send a card to every one of them, so i had to whittle the list down to 150 (149 – i kept one card for myself). the act of revising the list was itself an exercise in gratitude, and fortunately i feel pretty confident that i’ve thanked the people who were on the original list but won’t be getting a card from me. i found a card i liked at tiny prints. i looked through my pictures from the last year and came up with 4 that were pretty representative of the year i had. i’ve been able to put more of my energy into living my life instead of into recovery, regaining things i’d lost. so the pictures are from some experiences with friends and family. well, i’ll show you.

what do we have here?

top left – with molly and zari at zari’s graduation from willamette university. zari has been my friend since she was in preschool, which means that i’ve known molly since they buddied-up around middle school. two very awesome ladies.

top right – kristin and i eating lunch in montrose, a haunt from our elementary school days. the picture was taken by my friend sandy from high school. it was the first time those streams had crossed (there is nothing dirty about that sentence, so knock it off). before that week, kristin and i hadn’t seen each other in about 25 years.

bottom left – me with emily. we’d just ridden the ohsu tram in portland – my first time. it was a lovely day with amazing views of mount hood and mount st. helens. the picture was taken by my cousin mark. he was visiting from arizona. also off-camera is mark’s friend k.c. – they had a thanks-to-facebook reunion that day.

bottom right – me with my grandma betty. my friend lisa took this picture at tumorfest. that’s the lovely brick wall that i see when i look out my kitchen window.

i’ve been having a flare-up of my neurological symptoms, which has significantly shortened my self-propelled travel radius. so much of the last few weeks have been spent at home in my apartment. not being easily able to go out turned out to be a silver lining. i’ve spent an hour or so each morning writing notes on the back of each of the 149 cards.

one day i was feeling well enough to walk down the block for a pumpkin spice latte and pecan pie while i wrote some notes.

my spirits were lifted each day when i thought about all of the wonderful things, big and small, that these folks bring to my life. it also gave me time to do some math. look – i even made a chart!

here’s some geography for you. there were 6 international cards (2 to greece, 1 each to morocco, india, australia and good ol’ canada) and 4 hand-delivered. i could have hand-delivered more of them, but i think that getting mail is fun. plus i’m trying to single-handedly (bob dole refuses to help) save the united states post office.

here are some more numbers from operation giving thanks 2011:

# of times i cursed in a note – 2, i think. both were pretty mild.

# of envelopes short – 1

# of stamps licked – 0. i don’t miss the taste of stamps one bit.

# of duplicates – 1 that i noticed. and the winner is ms. juliet carter.

 in honor of juliet, # of cards to people i know from my summer in greece – 5

# of cards to people who are or were once my neighbors – 8

# of cards to people who are relatives of mine – 9

# of times i wrote the word “kriste” – 298

# of cards to people who have their writing tattooed on me – 3

# of cards to people who have tattooed me – 1

# of cards returned to sender – 2

# of cards to friends from when i was in elementary school – 5

# of cards to people/organizations i met directly because of tumorfest – 16

when i look at the list i’m reminded of the promise i made to myself when my medical drama happened. 10 years later i wanted to look back and be thankful that i had the brain tumor. i’m coming up on 2.5 years. a quarter of the way there – wow. and so many of the folks i wrote notes to are in my life because of that brain tumor – directly and indirectly (facebook. i’m looking at you.).

i highly recommend writing thanksgiving cards. the holiday season has never been a favorite of mine, but taking this gratitude inventory this time of year just might change that.

time to start my list for 2012.

well, it has to do with this:

i remember watching this live and feeling the importance of what muhammed ali was doing. no, smartypants, not lighting the olympic flame although that is also important. ali was brave enough to stand up in front of the world, literally, as himself without hiding. i remember being really moved by that, and watching it now i’m even more moved. and i think that i better understand the bravery. i had to summon it, on a much smaller scale, when i was taking daily walks down my busy street when i was first learning to walk with a cane. feeling exposed and nervous about people seeing me look weak, but doing it anyway.

so, dancing with the stars. i’ve only watched it this season and the last one. it’s not the dancing that i find myself thinking about. this season i’ve been thinking about this guy j.r. martinez. i’d never heard of him before dwts. when he was in the army and stationed in iraq, he was severely burned over 40% of his body. now he’s a motivational speaker and was on the soap opera all my children. i don’t pay much attention to pop culture, but i know that chaz bono was the big controversial casting on this season of the show. personally, i love that an out gay man, carson kressley, is not the controversial one. ideas and situations that are scary to us are made less scary once we know someone involved. and tv is one way that we get to know new people. i think that homosexuality became less scary and strange to people who didn’t know any out gay people once they got to know jack and will on will & grace. with dwts, without any lecturing, people were exposed to some transgender issues (and correct pronoun usage) because of chaz bono. and by casting j.r., who has significant facial scarring (and has himself pointed out that he only has one ear), dwts is allowing viewers to look at him and move through any discomfort they might see into paying attention and into his personality and his skills. now his trauma and mine are very different, but i identify with him as a person who looks different. and i appreciate that a show filled with sequins and feathers and spandex and spray-tans can help people to see past those things. j.r. is treated like a regular person because that’s who he is.

thanks in part to netflix instant, lately i’ve been watching a lot of obsessed, hoarders, and intervention – what i like to call recovery porn. those shows are interesting to me because they’re basically short documentaries about recovery. through those shows i’ve been introduced to the concept of “sitting with” emotions. the idea is that you acknowledge unpleasant or foreign emotions and then “sit with” them until they pass. on obsessed the therapists use this process to help people with fears related to ocd overcome those fears. by having the person sit with their fear, the person sees that the fear will pass, and can eventually start dealing with other issues that are involved. i guess that dwts is having viewers (15 million for the most recent episode) sit with any discomfort they might feel about looking at a person with major facial scarring. what viewers are likely finding out is that the discomfort eventually passes and and that the man has other qualities.

i think that j.r. martinez is brave, and not only because of his army service. he’s living his life, and by living part of that life on primetime network tv he’s helping other folks at home in their own communities be met with a little more understanding and compassion.

this was me in pre-op, just after they put in my IV. i thought that i was going to have brain surgery (singular) and that the incision was going to be my biggest problem. i packed many wide-necked shirts for my post-op time before i would head back home to oregon.

here i am about a month later. i’ve had 4 brain surgeries. a stroke. i rip-van-winkled most of that time – i only know what happened from stories. in the first picture i’m not using my left arm because it has an IV in it. in this one i’m not using it because IT DOESN’T WORK. i had a major brain injury in there at some point too, and was on some pretty serious meds. on this particular day i’d just gotten the feeding tube removed from my nose and i was just about to eat my first meal – food that had been blended up like baby food (“mechanical soft”) because i had trouble swallowing.

meanwhile i was trying to figure some stuff out. a lot had changed. i couldn’t sit up on my own (balance issues). i had crazy double-vision. sometimes i would hallucinate and see things that weren’t there. and that arm! the docs would come in and neurocheck me. they’d ask me to hold my hands out in front of me and pretend like i was holding a tray. the right hand was fine, but that left hand. sometimes it would hit me in the face. what was going on?

ok, now to senator dole. in my defense, the first presidential election i ever voted in was 1992. i paid a lot of attention to the campaign in 1996.

as i started becoming more alert there in my hospital bed in st. joseph’s hospital, i named that arm. named it bob dole. and bob dole “getting with the program” became a theme of my recovery.

here’s a little history lesson for you. bob dole represented the great state of kansas in the US senate for almost 3 decades. he’s a veteran – was in world war II. he was hit by german machine gun fire and his right arm was paralyzed. being a friendly midwesterner, he usually carries a pen in that hand as a signal that he can’t shake hands with it. now see, bob dole knows that he can’t use his right hand – he’s holding a pen in his official portrait. any politics aside, he’s my kind of guy.

but enough about bob. it’s a strange feeling when your brain knows just what to do but it seems like your hand speaks a different language. it’s hard to describe. if you don’t understand, i hope that you never do.

so i set about getting bob dole with the program.

i don’t remember exactly how it started, but my nurse brian and i were talking about flipping the bird. i ended up showing him possibly my favorite clip from flight of the conchords. WARNING: adult language. and hand gestures.

at the time i wasn’t allowed to drink anything. i just chewed ice chips all day. and i had a love/hate relationship with those ice chips. and therefore with the people who brought them to me. i started flipping off brian when he would bring them. why? maybe they weren’t icy enough. i don’t know.  i had like a billion things wrong with me.

please don't direct any offensive hand gestures at my buddy brian.

so i woke up one morning and decided to put bob dole to work. i spent every spare moment teaching bob to flip the bird. it was hard work! the way i could do it was to do something with my right hand then try to get bob to do it. again, it’s hard to explain, but it felt a little like sending a message through jello. my brain says, “fold your thumb. bam. it’s a piece of cake.” but somehow it’s not. i had to actively think about how to fold my thumb, and then concentrate fully on making it happen. like i said, doing it with my other hand helped. so at the end of the day i pushed my call button and asked for ice chips. brian arrived, styrofoam cup in hand. i flipped him off with both hands. brian gave bob dole a well-deserved round of applause.

the next day, i decided to teach bob dole something a little more productive, and a little more in keeping with my schoolmarmness. so i taught him the sign language alphabet. i just tried it right now, more than 2 years later. it’s still pretty hard to do if i’m not doing it at the same time with my right hand.

sometimes bob dole likes to pick up pieces of sponge and put them into an old prescription bottle. what else would he do for fun?

so bob dole, hardworking midwesterner that he is, keeps on truckin’. he’s relearned how to crochet, and he helps out when i try to do embroidery. he’s still not much help when it comes to things like buttoning shirts. and he pretty regularly throws toast on the ground right after i’ve spread on my favorite jam. and driving’s been hard for him. when i go to make a turn i naturally flip my fingers down to move the turn signal. not so fast, though. my brain sends that message, but it doesn’t quite work that way. i have to concentrate on exactly what bob dole needs to do. my muscle memory for that part of driving is still there, but my body doesn’t work the same way as it did a few years ago. but bob dole can learn new tricks. now, after a lot of practice, the turn signal is more of an effortless thing. i’m not afraid of hard work, and neither is bob dole.

and he keeps on accomplishing new things. just this week i put on a pair of stud earrings for the first time. that meant that bob had the tough job of holding things steady. he only threw one earring on the floor (it still hasn’t turned up), but he did it! and now i get to wear the earrings i want to wear without having to go upstairs and ask my neighbor to help me.

bob dole likes photo ops with babies.

it’s turned out to be a perfect name for my left arm. bob dole is hardworking. modest. willing to try new things (whoops – i wasn’t going to mention viagra).

so come sit down next to bob dole. he won't bite. but he might throw you on the floor like a piece of toast.