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.
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.
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.
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.
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.