Monthly Archives

May 2009

so they change themselves.

garden love, originally uploaded by pilgrimgirl.

Just one more Audre Lorde poem that I’ve found incredibly thought-provoking…an excerpt from “Stations” (the very last part is my very favorite bit):

Some women wait for visions
that do not return
where they were not welcome
naked
for invitations to places
they always wanted
to visit
to be repeated.

Some women wait for themselves
around the next corner
and call the empty spot peace
but the opposite of living
is only not living
and the stars do not care.

Some women wait for something
to change and nothing
does change
so they change
themselves.

Pic above is some rosepetal love from my garden, by way of CatGirl’s artistry.

May 31, 2009

photo poetry

I take your hand….

wet gerber daisy, originally uploaded by pilgrimgirl.

One of my joys is to have books of poetry stashed on nearby shelves, just perfect for grabbing and reading a few poems when the time is at hand. Yesterday’s book was The Collected Poems of Audre Lorde, a book that I first happened upon at the Bluestocking Bookstore in NYC, but didn’t buy until later because I feared it’s weight would be too much in my slim carry-on bag.

One of yesterday’s discoveries was a poem about gardening and hope, titled “Walking Our Boundaries.” I suspect that only I could be so charmed by a poem that speaks of compost (yes, it is all-too poetic, in my mind). An excerpt:

I take your hand beside the compost heap
glad to be alive and still
with you
we talk of ordinary articles
with relief
while we peer upward
each half-afraid
there will be no tight buds started
on our ancient apple tree
so badly damaged by last winter’s storm
knowing
it does not pay to cherish symbols
when the substance
lies so close at hand
waiting to be held
your hand
falls off the apple bark
like casual fire
along my back
my shoulders are dead leaves
waiting to be burned
to life.

The sun is watery warm
our voices
seem too loud for this small yard[…]
our footsteps hold this place
together
as our place
our joint decisions make the possible
whole
I do not know when
we shall laugh again
but next week
we will spade up another plot
for this spring’s seeding.

May 30, 2009

Random

saying yes

orange skirt & edamame, originally uploaded by pilgrimgirl.

Today I said “Yes” to:

-an orange swishy skirt, my new favorite. feeling so good against my legs in the breeze

-edamame from my favorite blue bowl on the porch in the afternoon, with crushed sea salt on top (yum!)

-a new haircut (way overdue), from a new super-good stylist who invested more than an hour in my crop of thin hair, gave me an awesome scalp massage, and had me giggling the whole time. Anyone who needs a referral, drop a line in the comments!

-getting work done on my dissertation and making a significant discovery about two of “my” doctors.

-reading Moby Dick on the beach as the kiddos were at paddling practice in the early evening:

“Yes, as everyone knows, meditation and water are wedded for ever…”

PS: H/T to Maddie for the style of this post & photo. She is always an inspiration. :)

May 29, 2009

deep thoughts photo

rising rose

rising rose, originally uploaded by pilgrimgirl.

“There is one spectacle grander than the sea, that is the sky;
there is one spectacle grander than the sky, that is the interior of the soul”
~Victor Hugo

I can just never get enough of that azure blue sky (and the blooming roses frame it just perfectly, in my opinion).

May 27, 2009

friends

a quarter of a century

On this day, 25 years ago, I was sitting in a hospital bed surrounded by family members as my doctors told me that my leg would have to be amputated due to the large cancerous tumor in my knee. I tell you…my life seemed over at that moment. Over.

I was 12 years old and had just had my first chemo treatment. I’d been vomiting repeatedly and knew that my hair would soon fall out. Two days before I’d had a biopsy of my knee to confirm the diagnosis of osteosarcoma. But even after I learned that it was cancer and learned that I would have months and months of high-dose chemotherapy, it had never occurred to me that I would lose my leg.

I’m usually been rather blue on the anniversary of my cancer diagnosis. It’s a hard time with many painful memories that resurface. But this year is totally different.

In case you hadn’t heard the news already via FaceBook, I wanted all of you to know that I, or shall I say WE, met and exceeded the goal of raising $1000 for HandReach and for Huang Meihua’s prosthetic legs. I’m crying right now as I type this. Big hot tears of joy. Sure, I’ve “lost” a few things over the years…but in the meantime I’ve gained the most amazing friends. Saying thank you is just not enough, but I’ll say it anyways: Thank You! You are the best. You really are. Now go and have a wonderful weekend knowing that we just accomplished something absolutely amazing together.

May 23, 2009

amputee

with a leg to stand on

Lazy afternoon in the chair, originally uploaded by pilgrimgirl.

The picture above shows Bobette and I hanging out in our favorite spots on the overstuffed purple chair in our living room. At this moment I had my laptop on my lap and I was typing away on a a dissertation-related project. Bobette was doing what she does best: relaxing.

In many ways, my life as an amputee is something I don’t think about too often. I get up the morning and put my leg on just like anyone else gets up and gets dressed. It’s just part of my daily routine and I’m fortunate to have a high-tech prosthesis that’s very comfortable to wear. Lately, though, it’s seemed a bit larger in my life because I’ve chosen not to have a cosmetic cover put on my leg. This means that I attract a lot more attention when I love through public spaces, which is a constant reminder that my body is “not like the others” out there. It’s not something I typically mind, but there are some moments when I do feel a bit annoyed by the stares of passersby…

So the other day when I was biking home from the grocery store and my leg came off, it hit home to me just how vulnerable being an amputee can be sometimes. If my leg malfunctions (and there are any number of ways this can happen), I am reliant on the attention of anyone nearby to lend a hand. This happened once while I was traveling in China–my knee jammed while I was on an airplane. And the result was that it was “locked” straight. Now can you imagine trying to sit in an airline seat with a knee that was stuck at a 180 degree angle? Well, I couldn’t do it (as you can well imagine), and a kind stewardess ended up offering me her seat in the plane entranceway so I could sit safely as we landed. It all worked out, but it was a quite awkward, to say the least(!).

When my leg came off while I was biking, it wasn’t necessarily apparent to passersby because I was wearing long jeans. I suppose they might’ve noticed that one of my legs was _really_ long all of a sudden. They probably saw me stop pedaling and grab my thigh. They undoubtedly wondered why I stood there for a few moments indecisively clutching my handlebars and wondering what the hell I should do next.

Oftentimes I can just shift some weight onto my prosthetic leg, which will release a little whoosh of air and re-establish the suction seal that secures the artificial limb to my stump. But in this case the suction wouldn’t hold for more than a few seconds, and the air was whooshing in and out of the socket with loud burpy/farty sounds as the seal tried to hold.

I ended up coming up with a strategy that got me home. I did a sort of limb dragging zombie-walk with my right leg (my jeans keeping the prosthetic from falling off altogether onto the sidewalk) and I balanced myself with my handlebars–sort of like a ‘walker’. The awkwardness was magnified a bit as I attempted to go up a few small ‘hills’ and perhaps when I crossed a major intersection, but I’m guessing that few people even noticed, or they probably just thought that I’d hurt myself falling on my bike and was headed home. I thought about stopping someone who passed by to ask to use their cellphone to call for help, but after I’d walked about a block (I had about 3 to go), I decided that there wasn’t a whole lot that anyone could do anyways–I just needed to get myself home no matter how slow or ungainly that process would be.

So why am I sharing this story with the internets? Primarily because I think it’s helpful for folks to know how those of us with disabilities ‘make do.’ I think we are all more than a bit MacGyver-ish as we solve problems and get things done! Also, I’m sharing this because I’m thinking a lot about amputees right now because I’m raising money for HandReach for my birthday. I have a prosthesis that allows me a lot of mobility and I’d like to help other amputees have this same benefit. So I’m raising money for a 12 year-old girl, Huang Meihua, to get prosthetics for the legs she lost in the Sichuan earthquake. If you can, I hope you’ll join in this effort along with me.

May 22, 2009

Random

a little magic for you…

like honeycomb, originally uploaded by pilgrimgirl.

There’s something about these little flowers that just looks magical. Each time I look at them I make a wish and it feels as though it really will come true.

May 22, 2009

deep thoughts things I like world

My BIG Birthday Wish!

I’ve decided that this year what I really want most for my birthday is for each of you who are able, to make a donation to my favorite charity, HandReach. One reason I care so much about HandReach is that they provide medical services, most specifically prosthetic limbs, to children in China. I want to give the gift of mobility to these young amputees–because I know all-too-personally just how much easier life can be with a good-fitting prosthesis!

My friend Brecken of HandReach sent me the following message after learning of my plan to solicit donations:

Jana, you rock!!! I was offline all day today, only to log in and find a bunch of lovely donations from your friends. Now I feel like it’s HandReach’s birthday, too! :)

I’d like to designate this money to a special cause. We’re going to be providing prostheses this summer for a 12-year-old girl who lost both legs in the Sichuan earthquake last year. We just learned this morning that there was a fire in her temporary camp overnight, and her house and first set of prostheses burned. We’re planning to get her a set of even better prostheses, and plenty of excellent rehab. Her name is Huang Meihua (pronounced “Hwahng May-hwa”), and you can see her photos here [note: link fixed!]

Happy, happy, happy birthday, Jana! I can’t thank you enough for thinking of HandReach! You are giving the gift that will truly keep on giving….

For those of you who would like to join in my birthday wish, you can donate directly via this page. And do feel free to pass the link forward to anyone outside of this blog’s sphere who might also want to contribute to this worthy cause.

And for those of you who have already donated…your generosity amazes me. Thank you so much for making my birthday the best one ever!

May 22, 2009

photo poetry

a small cup of light

lacy reflections, originally uploaded by pilgrimgirl.

“But tomorrow, dawn will come the way I picture her,
barefoot and disheveled, standing outside my window
in one of the fragile cotton dresses of the poor.
She will look in at me with her thin arms extended,
offering a handful of birdsong and a small cup of light.”
~William Collins

The image above was the morning reflection on the wall from the light coming through my window at the Sacramento hostel. All of the windows had these gauzy, lacy curtains. If the old house was haunted it certainly seemed so with the ghosts of wind that caused the curtains to billow in the evening breeze.

May 21, 2009

world

Twexperiments in on-the-ground reportage

This afternoon UCI sent out a campus-wide alert (called a ZOTalert) about a possible gunman on campus by sending text messages to student and employee cellphones. Almost immediately the UCI homepage crashed, so to find more information I logged in to Twitter.

Using hashtags (which are search terms designated by #sign) I searched Twitter for any happenings. I found that most people tweeting the alert were using the “#UCI” or “#gunman” tags so I kept a browser window open with those search terms and started filtering through the noise to see which messages seemed to give corroborating information about what was actually happening on campus. (Note: I was on campus at the time, but not near the central areas where the action was happening).

I learned that a few buildings seemed to be on “lockdown” (such as Aldrich Hall and the Student Center), that students were warned to sit away from windows, and that there seemed to be a large police force amassed on campus (and a SWAT team, perhaps?). Then I started “re-tweeting” or reposting the messages that seemed to have the most new information, designating them as such by the “RT @username” prefacing each of my tweets.

Because my twitter feed sends my status updates directly to my FB page, a conversation started there among various staff and students to confirm the twitter info. Simultaneously I kept my twitter search windows refreshing and my cellphone nearby.

A few observations from this experience:
1) Twitter is an unreliable news source, but its invaluable for ‘of-the-moment’ reportage. Being able to communicate with tweeps in the Student Center who could see the police activities (including the detention of an innocent student in camo pants) helped me to know how serious the situation really was. I knew that there hadn’t been any actual shootings, just a concern over a possible gunman.
2) ZOTalerts, while a good system, really failed when it sent the UCI homepage down. This, IMO, aggravated the hysteria among various campus affiliates because no one could get current information.
3) I am personally concerned that the surrounding schools (there’s a high school 2 blks away and an elementary school abt .5mi away) weren’t alerted to possible danger. K-12 students were sent home as usual and those who ride buses were being dropped off at points all around the campus during the height of the scare. Apparently, the kids on the buses knew about the gunman through text-messenging or cellphone calls, but their bus drivers did not.
4) I learned a bit more about twitter functionality from this “twexperiment.” Next time there’s a scare like this on campus (whether real or faux), I’ll be even better-prepared to find and disseminate the pertinent information quickly.

UPDATE: Readers from the OCRegister, thanks for dropping by!

May 20, 2009