ashes to ashes

i did not inherit my grandma’s sense of style.

january 19th would have been my grandma florence’s 94th birthday. she wanted to be cremated, and her ashes had been in a box in my parent’s guest bedroom closet since soon after she died last march. my mom and i decided that her birthday was a good day to scatter her ashes – the next thing was to decide where. in 2010 we took gflo to our friends’ vineyard, harris bridge, to go wine tasting. it was a lovely warm late-summer day, and we sat on their deck while amanda played with their young daughter and nathan brought us tastes of the dessert wine they make. each time he came out with a bottle he’d ask us what we thought of the last one. gflo wasn’t a fan of sweet wine, and she let him know. so much so that last year when i mentioned to him that my grandma had died, he said, “the one who hated our wine?”

that’s harris bridge in the background.

gflo liked the idea of her ashes ending up in the pacific ocean, because that’s where my grandpa fred’s ashes were scattered by the fiendish-sounding neptune society when he died about fifteen years ago. the marys river (yep, no apostrophe) runs under harris bridge, meets up with the willamette near downtown corvallis, which empties into the columbia in portland, and eventually out into the pacific near astoria. mom researched local statutes about scattering ashes, which is an ok thing to do if you have the landowner’s permission. nathan and amanda were glad to have their vineyard be part of the story again, and mom and i made plans for the 19th.

“tyson is yelling at ms. york.” possible gflo’s favorite picture of me.

time for a related story.

i moved to corvallis less than a year after my grandpa fred died, to teach a primary multiage class in jefferson. the kids ate lunch in our classroom, which i grew to really love. some of the most interesting conversations i’ve ever had took place when i was sitting in a tiny chair at a low round table with a few 1st, 2nd, and 3rd graders. one in particular comes to mind.

you’re not seeing things. my grandpa is rockin’ a purple blazer.

the conversation was about grandfathers. i said that my grandpa fred had died (it was still recent enough that my breath caught when i talked about him). one of the kids asked me if i visited his grave. i got to, “he doesn’t have a grave, he was–” before it occurred to me that i had to finish the sentence – “cremated.” “what’s cremated?” asked one of the kids. i proceeded to explain in as little detail as possible while still being accurate. tyson, in the picture, shouted, “they burned up your dead grandpa?” yep, they did. another question, “what did you do with his ashes?” i said that they had been scattered in the ocean. tyson again - “they threw your dead grandpa off a boat?” yep, i guess that’s exactly what happened. and it was the first time in months that was able to think about my grandpa and laugh. thank goodness for second graders.

even if my legs were long enough, i would not have been allowed to have my feet on the table.

mom and i wanted to do something when we scattered gflo’s ashes, but nothing too fussy because she wouldn’t have liked that. i suggested that mom read the obituary she wrote (it was really for both of her parents, because there wasn’t one for grandpa when he died). she asked me to read the blog post i wrote about gflo. we decided to get a bottle of harris bridge wine so we could toast our mother and grandmother.

the “smokin’ hotties” picture from the obituary my mom wrote.

on her birthday, we brought gflo’s ashes to harris bridge in the snazzy quilted bag we got for that purpose last year on mother’s day. january 19th, 2013, was cold and cloudy, but at least it wasn’t raining. we unpacked her ashes, brought along the wine, and walked up to the bridge.

mom opened the plastic bag inside the box, and let gflo’s ashes fall into the marys river. she read the obituary and we drank a little wine.

see that lighter bit of the river? that’s her ashes. it was amazing.

we walked down to a spot along the river, and i read my blog post. there was more wine drinking, and less tears than i would have expected. i think that my mom and i both feel really thankful to have had gflo around as long as we did. grandpa too. they were pretty damn cool people to know.

i’m looking forward to wine tasting at harris bridge on a warm day this summer – i’ll sit on the deck and look out at the marys river, and raise a glass to my fabulous grandma florence.

MRI cheat sheet

recently, more than one of my friends has had a reason to ask me for tips about having an MRI. makes sense, because if hospitals gave out punchcards for them i’d have earned some free ones in the last few years.

behold the jesus christ tumor. named that by my uncle, because when he showed it to his fellow neurosurgeons they often said, “jesus christ!”

i had my first MRI at the age of 36 – it’s the one my ENT sent me for to rule out an acoustic neuroma as the cause of my gradual hearing loss. at this point you likely know that the MRI actually ruled in an AN. i had many MRIs in the 5 weeks i spent in the hospital in phoenix. part of the tumor is still in my head, so i have an annual MRI to catch any regrown early enough to treat it with the non-invasive gamma knife procedure instead of brain surgery. about a year ago i had a sudden increase of some of my neurological symptoms (vertigo, fatigue…), so i had a few bonus MRIs to see what the problem was (my shunt stopped working) and what to do about it (deal with it).

with those MRI credentials, i’ll give you my pointers/advice/knowledge. with a disclaimer: i’ve only ever had head MRIs.

1. ask if you’re having contrast.

sometimes your doctor will want a particular kind of imaging that calls for contrast. i’ve had two kinds – one where they give you an injection of the dye and then pop you back into the machine, and one where they hook you up to an IV and pop you back in with it hooked up. it’s not all that bad, just a good thing to know before you get started.

once before giving me contrast, the MRI tech said, “after a minute or two, it’ll feel like you wet your pants.” if she hadn’t warned me there is no way on earth that i would have believed that i hadn’t just wet my pants. so if you’re having contrast, ask if it’s that kind.

2. having an MRI is kind of like going to the dentist.

MRI machines are loud. and they require you to keep your head really still. for those reason, the tech will put in earplugs then pack you into the headrest with pieces of foam to keep your head from moving. and then he or she will chat with you. you can’t hear a word of it, and you can’t nod along. so be prepared to smile and say things like, “that’s great!” and hope that the tech didn’t just tell you that he’s having his dog put to sleep later that day.

3. say yes to a pillow under your knees, and a blanket.

don’t be a hero! when the tech asks you if you’d like a pillow for under your knees, say, “sure thing!” want a blanket? “that would be great!” you’ll have a little thing to hold and squeeze if you need them to stop for some reason, but i doubt that the tech will appreciate you using it because your toes are cold.

4. come prepared to nap.

when you have a head scan, you’re only in the machine to the top of your chest. the surface you’re laying on is pretty soft, and if you’ve taken my last piece of advice, you’ll be feeling positively comfy. there’s a mirror right above your eyes, angled so you can see out across from you into MRI mission control, but i say close your eyes and imagine that you’re in a loud sensory deprivation tank. you don’t have to do anything but lie there (in fact, that’s really all your supposed to do), so you might as well relax. the tech tells you through an intercom how long the next scan will be (mine range between 30 seconds and a few minutes – i’m usually in there for about half an hour all together), but if you fall asleep then none of that matters much.

5. get rid of all of your metal stuff

MRI stands for magnetic resonance imaging, so on your intake form they’ll ask you if you have any metal in your body, like piercings. so take that stuff out before you go. leave your rings and necklaces and earrings at home. if you have a piercing that you can’t take out, ask them about it when you make your appointment.

6. don’t watch this video until after you have your first MRI. seriously.

you’re welcome.

creative nonfiction

the pharmacy building is my favorite on the osu campus. i don’t know why. this is my view as i head back home from the coffee shop in the basement of the library.

i’m loving grad school – wonderfully busy. here’s the essay that was due today in my creative nonfiction class. the assignment was to write 1200-1500 words, with an episodic element.

If I Had a Million Dollars

“If I had a million dollars,

If I had a million dollars,

I’d buy you a house,

I would buy you a house.

If I had a million dollars,

If I had a million dollars,

I’d buy you furniture for your house,

Maybe a nice chesterfield or an ottoman.”

~ Barenaked Ladies

•

When the quick phone conversation with Dr. Benton ended, I wasn’t sure what to do next. It was about four in the afternoon, and he had just told me that the MRI I’d had at noon to rule out a brain tumor as the cause of my hearing loss had in fact revealed a very large tumor on the nerve connecting my ear to my brain. He suggested that I speak with a neurosurgeon within the next day or two. Conveniently, I already had one of those – my uncle Yancey. But before I called him, or called my parents, I felt like there was something else I should do next. Unfortunately, sorting through the things I’d learned so far in my thirty-six years of life revealed that I had never been told what you should do when you find out that you have a one-in-a-million brain tumor.

So I did the only logical thing I could think of.  I walked out my front door, across the street, and into 7-Eleven, where I bought myself a slurpee and a lottery ticket.

•

When I was a kid, my parents and I spent many weekends in a cabin two hours east of our home in a Los Angeles suburb. The cabin had no phone, no TV. It had a swing and decks of cards and bird feeders and trails in the “wilderness” down the driveway. In the nearby town of Big Bear, across the street from the Italian restaurant where about once a month we ate a 5-course meal with cheese and apples for dessert, there was an arcade. I traded in my allowance for tokens, passed by Ms. Pac Man and shooting games and the contraption that would flatten your penny and give it back to you with a bear where Lincoln had just been, and spent all my money on Skeeball. I waited all month to hear the sound of the wooden balls rolling down the chute after I put in my token and pulled the lever. The scuffed balls were the perfect fit for my hands, still a little sticky from garlic bread.

I didn’t play Skeeball for the blue tickets that folded out of the machine at my feet. I played for the thrill of watching the ball move away from me at just the right speed, just the right angle, to jump the concentric circles and disappear down the hole marked 50.

It is true that, in each house I’ve lived in since those days, I’ve set aside some space in my mental floorplan for the happy day when I become the owner of my very own Skeeball machine.

•

Since I sold my car a few years ago, I’ve become a frequent bus rider. The stop down the block from my old house has a shelter, and now I live a short walk from the Transit Center, where each bus line begins and ends with its own refuge from the rain. But this being the Pacific Northwest, in other parts of town I’m often soggy when the bus arrives. While riding bus 6 through my old neighborhood I’ve often admired a wooden shelter, clearly build by someone on the block. A few times I’ve gotten off at that stop just to spend thirty minutes sitting there in that safe haven until the next bus comes by and stops for me.

As I’m carried around town, with the freedom to gaze out the window that I didn’t had during my two decades as a driver, I imagine organizing residents and business owners to build shrines to public transportation at each stop along each route. In my mind I can see these sanctuaries most clearly when it’s raining.

•

My walk to the other side of downtown often leads me through my neighborhood used book store, usually in search of titles in the trashy paperback series I read to clear my literary palate. This summer I repeatedly found myself drawn to a hardback book with a book jacket the perfect shade of yellow, which I put back on the shelf because I couldn’t justify spending close to thirty dollars on a book when I had a bookcase at home filled with titles I’d yet to read.

The day before I headed out of town on an end of summer adventure with a friend, leaving behind a season of strained family relations and ushering in my triumphant return to a college campus, there I was back in the bookstore with the yellow book in my hands. I decided that this was the time to give in to temptation, so I bought it.

In my rhetoric class, I’ve learned that they call what happened kairos – the right place at the right time. My agnostic friend Jesse calls it synchronicity – paying attention to things that seem to happen for a reason without giving them any kind of divine meaning. This is How, by Augusten Burroughs, turned out to be exactly the book I needed to read on that very day. I never had to use the flap of the jacket as a bookmark because I read it straight through; I inhaled it. I immediately re-read it, loving its weight in my hands, thinking that it wouldn’t have meant quite as much without the security of its thick cover. On a trip that included time on three boats, it was just the anchor I needed.

•

I grew up in the suburbs – it was a steep walk to the black metal mailbox that tilted on a stand with four others at the end of my driveway. When I’d go with my parents to the post office to buy stamps, I was captivated by the orderly rows of tiny doors, each with their own small lock. I grew up to become an habitual letter-writer, and I still find myself fantasizing about adding a tiny key to my keychain, blithely filling out change-of-address forms in my imagination.

One of my pen pals, Meghan, is a friend from a summer I spent as an exchange student. Meghan lives in the Outer Banks of North Carolina, where she minds a lighthouse and her two spirited sons, not to mention her recent reanimation of the tiny schoolhouse in her village. Just what I would expect from a woman with a 2-digit post-office box number.

Each autumn I send out dozens of Thanksgiving cards, with gratitude for the people who bring good into my life. In the last year I’ve become friends with Jessica, who lives in my same city. I asked her for her address, and when she responded with a two-digit PO Box number, I decided that the time had come for me to channel my envy into figuring out how to get one of my own. Maybe Jessica and Meghan can write letters of recommendation for my application.

•

I buy exactly two lottery tickets each year, and always on the anniversary of that cardinal MRI (my ‘Scanniversary’). One I include in a letter I write to Dr. Benton, with gratitude for saving my life. The other I allow myself to slowly scratch with a penny from my pocket, like Charlie peeling away the wrapper on his precious bar of chocolate.  He opened three Wonka bars before he found the golden ticket  - maybe I’ll allow myself two more lottery tickets next year.

•

oh man, i love this book.

can you tell me how to get?

i have a to do list. it isn’t very long. please don’t call it a bucket list.

here it is:

1) see david letterman live (i crossed that off on a train trip around the US in my mid-twenties)

2) see the northern lights (this is really because of a charles kuralt story)

3) visit every state in the US during my forties

4) get a master’s degree (4 weeks down)

5) re-learn how to swim (last week i did a lap with only a kickboard)

6) drive cross-country

7) have a pet cow named henrietta

this week i crossed another one off that has been so deeply a part of me that i realized that it existed in the same moment that i realized i could cross it off.

8) live on sesame street

“i can see my apartment from here.”

i grew up in the suburbs outside of los angeles in the second half of the seventies. and i ate sesame street up. loved it.

but i wasn’t sesame street’s target audience. it was developed to enrich the lives of new york city kids – to give them experiences outside the city that they might not get otherwise. it had the opposite effect on me. i loved the idea of stoops, a grocery store down the street, people out walking. after i moved to corvallis, i bought a house with a big yard, in a part of town where not many people are out walking. it was a great house for me and my foster daughter, but i fantasized about living downtown. so when the opportunity presented itself about a year and a half ago, i was ready.

here’s how i connected the dots. last week, i stopped to talk to RJ, a guy who’s often out playing his harmonica down my street, to thank him for saying something to me a few weeks back about how well i’m walking without a cane. i had just gotten big waves from the guys who work at the hot dog shop.  then this happened:

on my walk home from campus that afternoon, i started thinking about that “these are the people in my neighborhood” song. and then i realized that i’ve always wanted to live on sesame street and i do now.

when bert and ernie’s lease is up, have them come talk to me.

FAQ

on the occasion of my 3-year anniversary – 3 years since the day this picture was taken:

i thought i’d answer a few questions that might come to a new reader of my blog and possibly even a longtime reader.

where did the name “tumorfest” come from?

“tumorfest” is the name my friend madalaine gave to the drive that she, my mom, and i took from arizona to oregon. on the first anniversary of my tumor surgery, i was in hawaii and got my phoenix tattoo. for the second anniversary, i wanted to throw a party to get folks from different parts of my recovery together. tumorfest was the logical name. the second tumorfest was this last week. august 7th.

who made that rad tumorfest logo?

the logo came to me in a dream. i drew it and emailed it to my buddy noah (son of madalaine). he does graphic design, so he whipped up the logo. the colors are from my plaid rocking chair.

you used to have a lot of migraines. do you still?

i started getting migraines in elementary school. as a young adult, they became more frequent, and before my medical drama i was having 4 or 5 a month. they almost always were on my left side, behind my eye. which is where my tumor was/is. since my surgeries, i haven’t had a single migraine, not even a headache. a silver lining.

where were you when you had your stroke?

my stroke happened after the tumor surgery, so i was conveniently already in the hospital.

how did your stroke happen?

the tumor was too large to remove completely, so dr. spetzler de-massed it. the area where it was collapsed, which pulled on structures it was attached to – that was the bleed – a hemorrhagic stroke.

what is your secret chicanes wish?

my wish is that ellen will discover this blog and have me on her show to shower me with rad canes. this wish is complicated by the fact that i have no desire to be on television.

what are you going to be studying when you start at osu in the fall?

i’m starting a master of arts in interdisciplinary studies. i’ll be integrating three fields (mine are sociology, english, and speech communications) to create my own program of study. i’ll be looking at how writing personal narrative in a group can be used to heal trauma. basically the writing part of  digital storytelling.

do you still collect canes? how many do you have?

there are 14 canes in my hall tree. i inherited a few from my grandma when she died, and i’ll continue to keep a lookout for cool canes. you should, too.

now that you aren’t walking with a cane anymore, shouldn’t you change the name of this blog?

i named the blog “chicanes” because of a line from an ELO song (“can’t get it out of my head” – a little tumor humor). and i stand by my tagline – “if you have to walk with a cane, you might as well have some rad ones.” that’s just a fact.

it looks like your life is really good. should i go and have a stroke so that i can be cool like you?

yes, my life is really good. but i strongly suggest that you avoid having a stroke, if possible. pretty much everything i do is hard. but i don’t mind the hard work – “i’m just glad to be here, happy to be alive.” there has to be an easier way to have a cool life like me. to get started, i’d advise you to look for silver linings, to notice all of the things around you to be grateful for, and to put good into the universe – it comes back to you.

“there is value in standing up and being counted.”

i’ve had the hook from this song stuck in my head while i’ve been percolating this blog post.

the idea of “coming out” has been something i’ve been thinking about a lot these last few months.

at the forum on acquired disability i attended as a panelist last month, there was some talk about being open about being a person with a disability. i know that i am – it took me a while though before i could claim the title of “disabled” without feeling sad or embarrassed. it’s not my only identity, but it’s one of them and by being open about it, not only have i felt like i was living a true life, but my friends have developed more awareness of the realities of living with a disability as well.

a winter 2009 visit to the school where i used to teach.

“coming out” is probably most associated with the idea of folks in the LGBTQ community revealing their sexuality and gender preferences.  i’ve ended up having some interesting conversations with friends lately around this topic. one was a with the woman who waxes my eyebrows – yep, i’m coming out about having my eyebrows waxed! my eyebrow stylist said that her younger brother came out while he was in his late teens and that she once said to him, “i don’t care that you’re gay.” she realized that that didn’t sound like what she felt, so she clarified by saying that of course she cared that he was gay – it was a piece of his overall identity and because she cared about him, she cared about the pieces of his identity. i’m not sure that there’s a simpler way of saying what she meant.

gandolf!

a few weeks back, anderson cooper issued a statement in which he said “the fact is, I’m gay.” his statement was interesting to me, not because i’m interested in the sexuality of public figures, but because of this line - ”i do think there is value in standing up and being counted.” although i’m not gay, that sentence really resonated with me. there’s value in standing up and being counted not only because you’re able to live a truer life, but also because the count is more accurate. i’m guessing that the more public figures come out, the less “different” people feel who are not straight, and the more regular folks feel safe coming out. there’s also the idea of community – i feel like marginalized groups naturally create communities which welcome new members with acceptance and experience. this is certainly true in the disabled community – i could see it so clearly at the forum i went to last month. it has also been a strong force in the “it gets better” campaign – this idea that other people have been through what you’re going through and have had similar experiences.

which all got me to thinking – is there any piece of my identity that i’m “in the closet” about? i’m out as a disabled person, a vegetarian, and now a person who gets her eyebrows waxed. when i was a foster parent, my foster daughter and i didn’t hide how we ended up together. i’m honest that i don’t care about sports. i admit that i love reading a super-trashy vampire series. what else?  in taking an inventory of my life, i did see one thing that i’ve made an effort to hide. so inspired by anderson cooper’s words, here i go.

i’m an atheist.

some background – i grew up in a secular home, but my parents really encouraged me to go to church with my friends, so that i’d have a better understanding of different beliefs. i enjoyed going to church, but the religious teachings never really resonated with me beyond the storytelling level. then again, i think that i might be hard-wired for atheism – i never really got into the whole santa thing, and when i confirmed my suspicions i was outraged that my parents had lied to me, and i made a catalog of all the other things they’d lied about – the tooth fairy! the easter bunny! so i think that i’m a skeptic on a genetic level.

but i also from a young age realized that being an atheist was something to keep quiet about. i really went into the closet about it when i started teaching elementary school in my mid-twenties. my first school was in a strongly religious community, and i worried what people would say if they knew. i worried that people would view everything about me through that lens. so when kids would ask me if i believed in god, i learned to shift the focus away from me – “what about you? do you believe in god?”

my foster daughter was really curious about religion. i was very honest about my beliefs. but she went to the school where i taught. so i explained to her that she could never tell anyone at school that i was an atheist. saying that made me feel morally wrong, but it was just too risky.

just like my parents did, i encouraged my foster daughter to go to church with her friends. i wanted her to be aware of many belief systems, but i also wondered if one of those belief systems might really resonate with her. because i’m not an evangelical atheist. what it all comes down to for me is that i admire people who do the right things in their lives – their motivation truly doesn’t matter to me at all.

i usually listened to npr on my commute, and enjoyed the “this i believe” segments. once a week a person would read an essay about something they believed in, with topics ranging from addiction to war. in 2005, penn jillette (of penn and teller) read his essay, starting with this – “i believe that there is no god.” i remember feeling a jolt when i heard that – did he really just say that out loud? on the radio? i felt like i was a little less alone, a little less different. and since then, whenever i see him on tv, i feel a connection to him – he’s like me. he could say the thing that i wished i could say, but i couldn’t because it would have put my job in danger. truly. i think that some people still have this idea that atheists are predators, and i was an elementary school teacher in a very religious school and town. not a safe place to out yourself. but i’m in a stage of my life where it feels safe to say it.

me with my first class.

so i’m standing up and being counted as an atheist.

and it seems fitting that i’m finishing this post on sunday morning. soon i’ll be heading out for my own sunday morning ritual – i meet my grandma for the $1.99 early bird breakfast special at a dive bar down the road.

community

my trip to southern california has me thinking about community.

it’s been a while since my last big train trip, so when the opportunity presented itself (more on that in a bit), i used my 15% discount as a person with a disability and got myself a ticket to head down south. my mom took me to the train station the next town over.

i spent a good part of the trip in the lounge car, enjoying the views and reading the book (“awol on the appalachian trail” by david miller) that my skype book group decided to read this month.

my itinerary was packed. it centered around the forum on acquired disability that the national council on disability was holding at UCLA on june 8th. since it costs the same, i added about a week in the LA area before the forum and about a week in the san diego area after.

this trip has me thinking a lot about community – the communities to which i belong, how a sense of community is created, how community helps recovery. those kinds of things.

community by skype

i was picked up at union station is los angeles by molly and her boyfriend dan. molly and i went to high school together for about two years. we were friendly back then, but i wouldn’t say that we were friends. we reconnected via facebook, and when she suggested that we start a skype book group, i jumped at the idea. she brought in her friend theresa, and i brought in my friends susannah and kristin. kristin and i went to elementary school together. susannah and i went to middle school together. but molly, kristin, and susannah had never met. our book group (the conejo grade literary society) really started picking up steam at our meeting last month when we discussed “wild” by cheryl strayed. the author was a storyteller at an event in portland soon after that meeting, and theresa and i went to the festival together – it was the first time we’d met in person, although we both live in oregon. the other ladies all live in southern california, and we decided to get together for a meal and some drinks when i was in the area. when we did, it was so fun for me to see these ladies at the same table with me, and i was honestly amazed by how much they really knew each other through our skype meetings and the interactions that go on in facebookland.

the conejitas (minus theresa)

each of the women in my book group welcomed me into her home at some point during my stay. these women have become my treasured friends, and i’m glad to be able to build connections with them even though we live far away from each other.

community by facebook, texting, and blogging

almost exactly a year ago, i got a message from laura morris, a woman i’d gone to high school with and who knew about my medical drama because of facebook. she said that her cousin, angelica, had just had a stroke (she was in her thirties), and asked if i would get in touch with her. she also said that she’d passed along the address of my blog, and when i connected with angelica it was clear that she’d read it. in the last year angelica and i have celebrated our accomplishments, shared our fears, read each others blogs (angelica started blogging while she was still in her hospital bed) – generally were there for each other. it took a year until we were there for each other in the same physical space, and when we finally met in person last week it was almost anticlimactic.

anticlimactic in the raddest possible way.

community by geography

i’m writing this at the home of my beloved childhood neighbors, the charnows. they’re responsible for this leg of the kriste relay. they lived across the street from me when i was in elementary school. madalaine and michael are the elders of the family. jesse, their oldest son, was born when we were neighbors. he’s 30 now – which doesn’t seem mathematically possible. daughter erin was also born when we were neighbors. she and her husband sam live here at the charnow compound, along with their toddler daughter, thyme. son noah was born after they moved to encinitas – he’s in art school in san francisco. matriarch madalaine flew to phoenix to help my mom drive back to oregon when i was released from my nursing home. michael has always been “mikey-dad” to me.

these folks set the neighbor bar pretty damn high. they’ve had one really memorable set of neighbors since our time together on henrietta avenue. while i’ve been here i’ve spent quite a bit of time talking about how great my current neighbors are, reminding myself how fortunate i am to be in my current living situation.

having the charnows as neighbors changed the course of my life. every single person in the family has had an impact on me. i think that having them across the street at such an impressionable age really made me believe that the universe is friendly and on my side. it encouraged me to reach out and look to build community around me – in my neighborhood, in the classrooms and schools where i taught, in my living room watching the bachelor with friends.

me and thyme, the littlest member of the charnow clan

community by chance

about a month ago, i had a call from the vice-chair of the national council on disability (the council advises the president on disability-related issues). the NCD was holding a forum on acquired disability, and the vice-chair wanted to know if i’d be on a panel at the forum. this was the first time since i became disabled almost 3 years ago that i ever really stopped to think about the elements of my disability which are different from someone who was born with their disability. and the first time that i ever noticed that i have similarities with veterans – vets make up the majority of adults who become disabled.

my role on the panel was to address the issue of how an adult can come to terms with his or her new life after acquiring a disability. i can see why my friend sara (a member of the NCD) suggested me for the panel – i feel like i’ve successfully, and happily, moved my life forward after becoming disabled. this is something that i think about – how did that happen? the members of the panel had a conference call and we emailed in the weeks before the forum to make sure that we were on the same page when it came to the desired outcomes of our panel. i did a lot of thinking about what was the most valuable information that i could share with that group of people – lots of folks from various agencies serving adults with disabilities. by the time the day of the forum arrived, i knew what i wanted to say.

each person on the panel was given a few minutes to speak. i was first, and i told this story – when i got back to corvallis after 2 months in the hospital and nursing home, a friend kept saying, “we can’t wait to have the old kriste back.” it was making me really mad, but i couldn’t put my finger on why. i told my friend noah, twentysomething year-old charnow, and he said the sentence that would change my life. “you’re not the old kriste, you’re kriste 2.0.” aha! i still had many of the qualities of the old kriste, but now i had some brand-new features. that really seemed to resonate with the forum attendees. in fact, it was referenced a time or two at other points during the forum.

there was some talk about how to find newly disabled folks to include them in a supportive community. i brought up facebook – these veterans who are becoming disabled are most likely very familiar and comfortable with facebook. i’m a member of a facebook support group for stroke survivors, as well as one for people dealing with the specific kind of tumor i have – in both groups i get to see myself within a range as opposed to being the outlier among the people i spend time with day-to-day. i also said that because of facebook, i think that my little virtual corner of the world has greater empathy for people who are disabled. i’m very “out” as a disabled person and i have a really diverse group of friends (including teachers of mine from high school, people i went to high school with, and 4th graders i taught who are now young adults) who now pay attention to curb cuts and other accessibility issues.

towards the end of the forum, i was stopped by i. king jordan, who was on a panel after mine. he became deaf in an accident in his early twenties, and went on to become the first deaf president of gallaudet university, a college specifically designed for students who are deaf and hard of hearing. he’s also famous for saying, “deaf people can do anything but hear.” he told me that he admired what i said in my panel, and that he would use the idea of 2.0 from then on. i wanted the forum to go on and on – i loved listening to the stories and mulling over things i’d never thought about before. i look forward to the next opportunity to interact with folks from the acquired disabilities community – they made me proud to call myself a member.

kriste 4.0 at the getty the day before the forum

merriam-webster defines community as, “a unified body of individuals.” when i taught elementary school, i came to see that community is also created by shared experiences – this trip has reminded me of the many different ways that experiences can be shared. i spend a fair amount of time feeling grateful for the individuals in my life who are on the roster of “team kriste” – these folks make a huge difference in my life. but my time in southern california has really caused me to notice the many communities to which i belong. before my medical drama, i referred to myself as the little red hen. but now i see myself at the center of a venn diagram where circles of communities overlap. and 3 years out from the events of the summer of 2009, i’m still surprised to find other circles i hadn’t realized were there.

all this talk about community has placed that word at the top of my list of theme words for year 4.