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.

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.

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. :)

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).

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.

:)

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.

:)

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.

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!

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.

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!

so many roses

GrandmaB's funeral, originally uploaded by pilgrimgirl.

Grandma would have just loved this. All the pretty roses.

Do not watch the petals fall from the rose with sadness,
know that, like life, things sometimes must fade,
before they can bloom again.
~Unknown

workin' it....

breakfast at Temple coffee, originally uploaded by pilgrimgirl.

This is how I work best, methinks--with all the necessities close at hand!

veranda

hostel house, originally uploaded by pilgrimgirl.

This is where I spent my evenings after I finished my work in the State Archives. What a relaxing, beautiful space.

This is the view from the inside, with the evening light filtering in:


I don't understand why contemporary builders no longer emphasize front porches. Perhaps it's because people spend more of their time watching TV and less of their time watching the world go by their front door....

more adventuring....

Coffee Shop, originally uploaded by Makiko.Y.

I learned that this little shop above, Temple Coffee, used to be a bookstore. I'm thinking that's one reason it has such groovy karma. So far I've started every morning in Sacramento in this spot: free wi-fi, delicious fruity scones, and hearts on my latte.

Now just wishin' the books were still here, too :)

Yesterday I tried my hardest to convince John that this town was worth a family visit. Oh, how he resists. So now I'm asking myself: is this a particularly charming place or is it just me??

Some notes on other recent adventures here: eating lunch in the Secretary of State dining room. Button-down shirts were the de-facto uniform and the menu was sorta 'meh,' but I met the most dynamic line-cook ever (damn it's fun to meet someone who's truly passionate about their job) and he did fabulous work with my veggie burger.

I walked a few blocks out of my way to find the closest used bookshop. Loved meeting Raffles, the resident kitty (and she tolerated me). Loved that they had a "Happy Hour" 10% discount, loved that some of the books I bought were only $1, loved meeting a young art teacher buying a stack of threadbare hardbacks for altered books, loved walking past the fortune cookie baker (oh, what a smell!) on the way. Why (oh why) doesn't OC have a decent bookstore--esp a used bookstore? (Acres of Books, I miss you, too). I need such spaces to feel alive.

Last night I sat in the parlor of the old home where I'm staying, working on my conference talk for tomorrow(!). To try to avoid the skeeters I opened the windows wide for the evening breezes (rather than sitting on the veranda) and was charmed that I could still hear the sax player practicing nearby, well into the wee hours of the night.

For those of you who might find yourself in Sacto anytime soon, some pertinent links:
Sacramento Hostel
Beers Books
Temple Coffee
Pyramid Alehouse

PS: To the dissertation gods that have arranged for me to have the funding necessary for such adventures while I'm working in archival repositories. Thank you!

Note: trip pics to come soon--I'm using my ASUS laptop while traveling and I can't get it to read the SD card from my camera--any advice on how to fix this??

If this is you...(taking the long way home edition)

If, today you had a long day working in the State Archive, all the while wondering why (oh why) archives always have the world's most uncomfortable and unergonomic chairs, you realized that you had no plan whatsoever for after 4pm when all good state offices close. So you looked up the Pyramid Alehouse that your teammate recommended and realized it was on your way "home" for the evening, so you decided to go and discovered while you were sitting on the patio watching the trains go by that the apricot ale really is as good as they said it was. Then you had a tasty meal and still had hours to go before it was dark so you decided to take the long way home to see what adventures might be in store.

So it's really no surprise that a young boy holding a sign saying "Urban Farm Stand" caught your eye. And when you walked that way you discovered two tables with some fresh-picked organic produce and a charming community garden. So you bought some fresh berries for breakfast tomorrow and then noticed a woman with a massage chair set up nearby.

So if this is you, your entire body started wanting a massage right at that very moment, and when you walked over you were swept off you feet when she told you that the massages were complimentary because she was trying to find new clients. Oh my. The best 15 minutes of the day as all that stress melted right off your shoulders.

And as you walked the remaining blocks home and then sat on the large verandah of this historic home where you're staying (in the 3rd-story attic room--so romantic and with a staircase to rival that of the Pilgrim Inn at Canterbury), you realize that life just goes better when you open yourself up to taking the long way home. And also...you've fallen in love with yet one more city (a city with light rail that I will plan to take somewhere tomorrow--another adventure to be had!)

pillars

Two pillars., originally uploaded by mind on fire.

A teammate leading me in a guided meditation/relaxation prior to our race. I really had the jitters and was quite exhausted due to recent travel and general lack of sleep--not to mention the emotional drain from my grandma's funeral the day before.

As always, I just had to remember to breathe to find my strength.

PS: John's composition with this photo really captured the beauty of the moment...

Pilgrim classic: Mother's Day Proclamation for Peace

Originally posted May 13, 2007:

The celebration of Mother's Day originated with poet Julia Ward Howe, as a movement for women to fight the devastation of war and to show the way towards peace. Today's sentimental-flowers-&-Hallmark-card bedecked event hardly measures up to the fiery rhetoric of the day's founding mother...

Julia Ward Howe's Mother's Day Proclamation - 1870

Arise then...women of this day!
Arise, all women who have hearts!
Whether your baptism be of water or of tears!
Say firmly:
"We will not have questions answered by irrelevant agencies,
Our husbands will not come to us, reeking with carnage,
For caresses and applause.
Our sons shall not be taken from us to unlearn
All that we have been able to teach them of charity, mercy and patience.
We, the women of one country,
Will be too tender of those of another country
To allow our sons to be trained to injure theirs."

From the bosom of a devastated Earth a voice goes up with
Our own. It says: "Disarm! Disarm!
The sword of murder is not the balance of justice."
Blood does not wipe out dishonor,
Nor violence indicate possession.
As men have often forsaken the plough and the anvil
At the summons of war,
Let women now leave all that may be left of home
For a great and earnest day of counsel.
Let them meet first, as women, to bewail and commemorate the dead.
Let them solemnly take counsel with each other as to the means
Whereby the great human family can live in peace...
Each bearing after his own time the sacred impress, not of Caesar,
But of God -
In the name of womanhood and humanity, I earnestly ask
That a general congress of women without limit of nationality,
May be appointed and held at someplace deemed most convenient
And the earliest period consistent with its objects,
To promote the alliance of the different nationalities,
The amicable settlement of international questions,
The great and general interests of peace.

time and magic and (just a few) tears...

As I was showering after returning home from my first-ever outrigger canoeing race and reflecting a bit on how much fun I'm having with this sport...I couldn't help but think back to where I was a year ago: in the hospital agonizing over an infection in my left leg that just wouldn't heal.

Many of you probably remember the entry I wrote after that night I spent in fear of losing my leg and the hope I had as I was slowly recovering. Back then I had no idea that my battle with the infection would flare up again while I was visiting Denver, or would last well into August.

So as the hot water poured over my head and back I cried a few tears of joy...they were just about as salty as was the water that I swallowed after falling into the San Diego Bay this morning (boo on that nasty red boat who steered their nose under our ama!). But you know what--it didn't matter that we tipped. We recovered quickly, got our wits about us, and still ended up passing many other boats to a solid finish in the race (and I tell you, when we came into the home stretch and heard hundreds of people cheering us home, it didn't matter one bit what place we were in that race). We paddled our best and gave it our all. We had fun. I wouldn't have wanted to be anywhere else but out there this morning! (note to self: adrenaline is a magical drug--I leapt right back into that boat with nary a thought about my inability to do a pullup).

As a Mother's Day/birthday gift John bought me a fancy new steering blade(!!!!). What a great partner he is--seeing me through thick and through thin for the past two decades. That man, he is pure magic--I knew if from the moment I first saw him and he proves it true again every day.

When I had my surgery at the end of last summer, my doc told me it would take at least a year before my leg would be healed through and through. But he was wrong. The healing...it's all done now.

:)

sisters

DAVSDOTR, originally uploaded by pilgrimgirl.

Grandma with her sisters (she's on the far left). She looks so much like my older sister in the pic that it's almost uncanny to me.

And, oh, aren't those hairdos something else?

PS: I belive that the caption on this photo misspells some of the names. Did I do this caption over a decade ago when I was compiling my family history? I can't even remember now...

outrigger sunset

outrigger sunset, originally uploaded by pilgrimgirl.

Our view off the left side of the boat while coming back into the harbor last night after about 45 minutes of ocean paddling (the outrigger is the thing on the bottom of the pic).

For a view of the best-ever novice outrigger canoe team, click here.

Pic taken by a teammate

grandma's wedding portrait

grandma's photos, originally uploaded by pilgrimgirl.

Isn't she gorgeous and what a wedding dress!

Do you see any family resemblance? :)

all along...

St. Francis, this is why I adore you, originally uploaded by pilgrimgirl.

LVII

SOME keep the Sabbath going to church;
I keep it staying at home,
With a bobolink for a chorister,
And an orchard for a dome.

Some keep the Sabbath in surplice;
I just wear my wings,
And instead of tolling the bell for church,
Our little sexton sings.

God preaches,—a noted clergyman,—
And the sermon is never long;
So instead of getting to heaven at last,
I ’m going all along!

~Emily Dickinson

Picture taken on a rambling walk in Julian, California.

one of those moments...

joy!, originally uploaded by pilgrimgirl.

Life has had its share of stresses and frustrations lately, so much so that for about the past three months I've had to put effort into finding space to "get away from it all for awhile." Though I love the work I do as a PhD student, it has a way of filling up my mind and my life in ways that make it difficult to ever feel like I have time off.

So Saturday was one of those moments when John and I were able to escape for a bit of a date night (time for just the two of us--yay!) and chose to watch a friend's Roller Derby team match. It's a pretty unlikely event for me to attend, so the novelty made it even more fun, I'd say.

I really loved this picture of me with Alicia (wearing her cute roller derby uniform)--it's so spontaneous and happy.

Pic by John

at last, and too soon...

so pretty, it hurts a little bit, originally uploaded by pilgrimgirl.

"Doesn't everything die at last, and too soon?" --Mary Oliver*

Three of my grandparents died when I was fairly young. So for many years my GrandmaB (my kids called her "Candy Grandma," can you guess why???) was my only grandparent.

She passed away this morning after suffering from dementia for several years. Of late she didn't even know her own name, much less the identities of those who came to visit.

I have many memories of her, perhaps the most distinct being her pain as she watched her oldest son--my father--die of cancer. I can only imagine how deep her suffering was, and remember her saying that she'd never expected to outlive my father.

So I'll travel to Utah to join the family in celebrating the life of this beloved woman. It will be a thrill to see the extended family, as I suspect that it might be a very long time before we all have reason to gather again.

*Thank you, Deborah, for this bit of poetry.

breathless

spring quince blossoms, originally uploaded by pilgrimgirl.

Breathless, we flung us on a windy hill,
Laughed in the sun, and kissed the lovely grass.
~Rupert Brooke

Here's hoping that your May Day is full of beauty.