what I really want…

From my handwritten journal (written in green ink, no less) on July 17, 2000

***

I’ve been thinking about what I really want (Though, as I’ve said to John, I am destined to follow on his coattails rather than forging my own destiny):

  • live in the Isle of Man for a period of time; a season, a year, a few years
  • write sometime important
  • study yoga, nutrition and natural healing
  • grow a huge, beautiful flower garden
  • return to school and study literature, women’s studies, and literary history (made that last one up, but surely it exists somewhere)
  • take more trips (holidays) and just wander and meditate in beautiful places
  • try to do things in old fashioned ways i.e. spin wool, weave, quilt, sew, do needlepoint etc
  • get a housekeeper
  • have a “library:” a room in the home totally devoted to the love of and perusal of books

***

How strange it is to think that I’ve tried my hand at all of those now–except for the Isle of Man part, but I suspect that living in Belgium is close enough¬† ūüôā

sweat

photo of two feet, one is normal and one is roboticWhile boarding a plane in Dallas last week a man stopped me and asked if I was an amputee. This question, asked by a stranger, often makes me wary.¬† My reflex is to cut off contact with the stranger as soon as possible because it’s my experience that I will then be stuck listening to that person tell me about every amputee that they know and about every news story that they’ve seen about amputee Olympians.

This time, though, went a bit different. Rather than explaining his question, he pulled up his pantleg and showed me his hardware. We were two of a kind. We spoke in our own lingo, confirmed that we were both RAKs and started talking technology. He has the latest and greatest knee, one that I will never qualify for because they are only available to ex-military. I had to stifle the urge to run my hand along his calf as I admired the sleek look of his knee and ankle joints.

We walked on to the plane and found we were seated a few rows apart. We kept talking, standing in our seats and speaking across the seats that divided us.

Two minutes in and we were talking sweat. He lives in Texas and I in SoCal. We agreed that there was no technology that could help as walk better as long as there was sweat–it causes our prostheses to slip and twist and slowly slide off of our bodies.

“I pour out cupfuls every day,” he said.

“Me too, and no prosthetist really listens to that issue, they keep telling me that if I was wearing my leg correctly, I shouldn’t be sweating so much,” I shared.

As the plane filled I shared with him my best advice, these spendy sweat blocker towlettes that I order online and that made walking in Rome and Pompeii possible. I also use them when we have a heatwave, which allows me to survive the workday without having to pour sweat out of my socket every few hours. He hadn’t tried them, but he said he would.

We exchanged business cards and promised to keep in touch.

I turned around and sat down.¬† As I fastened the belt and adjusted the position of my fake foot underneath the seat in front of me, I marveled at how satisfying it is to be seen by someone who lives life like me. I don’t even remember his name now, but we shared more in that brief conversation than I have with many people close to me. And somehow it’s a comfort to know that my problems with sweat aren’t just mine, but that he shares them.

Save

A quarter of a century ago

Twenty-five years is a such long time, over half of my lifetime.

On September 2, 1992 the temperature was somewhere in the 80s, a nice sunny California fall day. It was warm enough that I was glad that my simple white dress was made of cotton lawn fabric and had short sleeves as we snapped a few photos after our wedding ceremony in the midday sun.

There were so many things I didn’t know that day as I knelt at an altar and agreed to the LDS vows of a forever marriage. For example I would have been devastated to know that three close family members who were present at the ceremony would die too soon. My father would only live two more years because of pancreatic cancer, I would lose my brother-in-law to lymphoma five years later, and my grandmother a decade after that. I couldn’t foresee that I would move more than 15 times in those 25 years or that the wedding gift that I received that day, of a sewing machine from my mother, would become one of the very few possessions that would travel with me for each of those moves.¬† And of course it was completely beyond my imagination that the eternal wedding vows I agreed to that day would, seventeen years later, be erased by the action of a stake president when he excommunicated my spouse from the LDS Church, or that a year after that I would file for a civil divorce.
latte

Perhaps above all, I could not have imagined that 25 years later I would find myself sitting in a sleeveless polka-dotted sundress in a hipster cafe in Los Angeles sipping a latte, once again a newlywed, as Stijn and I discussed which light fixture would look best in our living room.

Voices from the Archive

making history podcast imageI started the Making History Podcast ten years ago when I realized that I wanted to talk to historians about the craft of history-making, and especially to hear about how they organized their research at each phase of their project–from the initial forays into the archives to the writing process.¬† I wanted to learn about their serendipities and frustrations, and to demystify the notion of the scholar working alone in the ivory tower.

The podcast has fallen by the wayside in the ensuing years, primarily being a victim to my working full-time in university administration.¬† Podcast episodes took about ten hours to produce and I simply haven’t allocated the time for that type of labor in the past few years.

However, I have a new endeavor that will launch this afternoon, that will be in the same vein as my Making History podcasting efforts, called Voices From the Archive, Letters During War.¬† I’ll be taking a virtual audience into the Archive with me, to spend some time working in correspondence held in the Chapman University’s Center for American War Letters Archive. Rather than using podcasting technology, I’ll be using Facebook Live to record the events, and supplementing that with links on FB and Twitter. And this will not be a solo effort, as I will have librarian and writer Doug Dechow as my partner in this venture.

war letters photoThe intention behind the FB Live programming stems from two primary motivations.¬† The first of which is to foster the kinds of discussions that I had in my podcasts–to have scholars engaging with primary source materials and to talk about how they will use those materials to support their research questions.¬† The second motivation is to explore the wealth of holdings of the CAWL Archive and to share with the public the rich source of materials that are available there.

Since I began having students work in the archive three years ago, I’ve been surprised at how engaging it is for them to work in these materials.¬† It is the case with nearly every student that works in the archive, that they write in their course evaluations that it was the most meaningful part of the course for them.¬† As one wrote:

Holding the correspondences of soldiers abroad in my hands was an incredibly moving experience. I now have the desire to do research and see if these authors ever made it back to Pier 17 in San Francisco, where they swore to meet after the war.

In this age of email and texts, which are often deleted after being read, we often forget the power that letters can have to preserve history…Even though it was time-consuming, I feel honored to have been entrusted with this small piece of World War II history…

In sharing a few bits and pieces from the treasures held in the CAWL Archive via social media over the past few months, I’ve seen that these materials are meaningful to a wide variety of people that extends far beyond the scholarly audience.¬† Nearly everyone has a family member whose life has been touched by war and the memory of that experience shapes their identity and worldview in a myriad of ways. Also, there is an element of innate human curiosity that stems from peering inside the personal correspondence of people who lived not so long ago.¬† How much are they like us?¬† How are they different? And what was it like for them to live through such an important moment in history?

If you’d like to follow along and join in this project, please follow our brand new Facebook page, where you can access the FB Live broadcasts as well as view other media that we’ll add to the research that we’re doing in the Archive.¬† We also have a Twitter feed¬†¬†¬† where we will regularly share small excerpts from the Archive.

 

Osteosarcoma Distal Femur0002

anniversary #33

Osteosarcoma Distal Femur0002Today, May 21st, is a day that is generally difficult for me because it’s the anniversary of the day that I was diagnosed with bone cancer.¬† And that diagnosis forever changed many aspects of my life.¬† A diagnosis like this one brings with is a lifetime of having to explain my complex health situation (my ‘pre-existing’ condition). It colors many of my social interactions, it means that I live in a state of simmering concern that the cancer will return.

It would be two days after my diagnosis that I would learn that my leg would be amputated and that I would be disabled for the remainder of my life. But in some ways that concern was very much on the back burner because what mattered most was that I somehow live long enough to let that matter–to have the problem of actually living with a disability instead of death by cancer being imminent.

Recently I mentioned to some of my students that I’d had bone cancer as a teen. Their demeanors changed dramatically when they heard that–I could see that even the very word of cancer was an impactful one, and to have ‘lived’ so long since my diagnosis (33 years!), well, that is a powerful thing.

Perhaps what I think about the most now, as I consider what the next 33 years might bring for me, is how I can maintain the greatest amount of health and mobility for myself as I face the natural declines that come with ageing.¬† I continue to need good prosthetics and good healthcare in order to live an active life like the one I have now, and that is an expensive prospect.¬† It also takes a lot of time and commitment to walk well and be strong.¬† Sometimes I am up for the effort that it takes and sometimes I’m not.¬† Sometimes I just want to be a couch potato and not have to try so hard every day.

But I think that is probably what changed the most on that day that I was diagnosed–that day I lost the luxury of laziness.¬† Since then I’ve had to work very hard to achieve even the basic goals of ambulation and self-sustenance, not to mention the extra energy that it takes to be gainfully employed, intellectually agile and socially engaged.¬† I don’t necessarily resent or regret it–it is what it is and there is nothing gained by wishing things could be different.¬† I suspect, too, that much of what I have achieved has come from being forced to be responsible and diligent in so many aspects of my life.¬† And in that I might even be called fortunate.

However, even if I realize that it is likely a larger good that this has happened to me (I don’t take even the simplest stroll down the street for granted), today I might indulge in a moment of ‘what if’…and consider what it would have been like to have been able to grow up without the added challenge of bone cancer and the loss of my leg.

Want to read a few other of my posts written on my cancer-versary? Click below.

Last year I spent my anniversary #inthegarden
In 2010 I had a giant fundraiser to buy prosthetics for a Chinese amputee
My 39th Birthday year
In 2012 I met up with an old friend in Zurich
In 2014 I told my daughter the story of my diagnosis

 

(image is not of my knee, but shows how osteosarcoma looks in a patient with a similar tumor)

strong shoulders

Getting healthy, one day at a time

A few years ago I realized that being healthy and strong was critical to my overall well-being.  In fact I began to see that when I was healthy, everything else in my life flowed better.  As a result, each time I sit down to set goals, healthiness is at the top of my list: to walk as well as I can, to do strength training, and to maintain my joint health.

For me being healthy is also one of my biggest challenges.¬† Because I’m an amputee I can’t just take up jogging five miles a day, so I find that I have to be a lot more creative in the ways that I exercise.¬† I also have learned that I can’t do this alone, so I have coaches and friends who keep me motivated to keep at my health routines.

As of right now, this is my weekly exercise schedule:

Monday:
Early Morning, strength training with Coach Sarah
Evening, gyrotonics with Victoria (at Beau Corps studio)

Tuesday:
Rest Day

Wednesday:
Early Morning, strength training with Sarah
Evening, Iyengar yoga with Denise’s Intermediate Class

Thursday:
Rest Day

Friday:
Early Morning, strength training with Sarah

Saturday:
Early Morning, Outrigger Canoeing Team Practice

Sunday:
Either a 2-hour yoga workshop or a solo paddle on my canoe

What I like about this schedule is that it is a good mix of activities that I genuinely enjoy.¬† And I also like that it is a mix of solo exercise and group/team exercise.¬† What I don’t like: is that I don’t get ample cardio exercise.¬† I also feel like I ought to incorporate more stretching into my regular routines, such as a deep stretching/yoga workout on Tues/Thurs mornings.¬† And I must confess that the first thing to go in this schedule is my Wednesday yoga class–it is so hard to keep that commitment between teaching into the evenings on Tuesday and Thursday (and also one Wednesday per month I am at our South County campus too late in the evening to get to my yoga class).

I also just feel like overall it’s not enough.¬† I’m not as tone as I used to be and I definitely get creaky and injured far more easily than I did even five years ago (not to mention having put on 10 pounds that is definitely not muscle).¬† But I can barely keep up with this routine on top of my work and teaching, so I can’t really imagine adding more (like swimming, I really want to add swimming–but when?).

I guess I’m curious if any of you can suggest ways that I could squeeze in a bit more exercise here and there, or if you want to share your fitness plans with me, as something I might emulate?

(Note: photo taken 6 years ago, when my friend Crystal was doodling on my shoulders–that’s not permanent ink…)

Reader, I married him

Just as I was beginning to plan our wedding a few weeks ago, this post came out from Clothilde about her simple Paris wedding. ¬†What she said about planning her event in two months was similar to the timeline that we set for ourselves, and I felt empowered by her thoughts about keeping things simple and “100% you.” Our version of this was a bit different, because of being in SoCal, so¬†here are the choices that we made:

-we’ve worn “wedding” rings for 5+ years (since he first proposed as we watched the sun set one evening at Griffith Park), so that was one thing we didn’t have to¬†worry about for the marriage. ¬†My ring is a vintage eternity band, from the ’20s. ¬†Stijn’s ring is a simple silver band.

-for a few weeks I struggled with what to wear. I’d thought a cocktail dress would be more befitting our stage of life than a traditional white dress, but after looking and looking, I couldn’t settle on anything that felt right. I wore myself out dress shopping (note: I tire of shopping pretty easily). ¬†One afternoon I was¬†thinking about my favorite short story, Isak Dinesen’s “The Blank Page,” and it occurred to me that a simple white dress was what I wanted as I was about to begin¬†the next chapter of my life (something that hinted at so many as-yet-untold stories):

It is in front of this piece of pure white linen that the old princesses of Portugal — worldly wise, dutiful, long-suffering queens, wives and mothers — and their noble old playmates, bridesmaids and maids-of-honour have most often stood still…¬†

The dress I settled on was a silk a-line floor length gown from J.Crew.  It was light and easy-to-wear for those two very long days of wedding happenings.

-we held our wedding celebrations at our 1921 bungalow-style home in Old Town Orange.  While hard in some ways (parking? food prep? one guest bathroom?), our home is so much a part of who we are, that nothing else would have felt right. We were fortunate to have perfect 75-degree weather and the wisteria and bougainvillea brought tons of color to the pergola in our backyard. Also, we used All-American Party Rental to augment our supply of party goods, and they were wonderful to work with.

wisteria

 

-we scheduled a civil ceremony¬†at the historic Santa Ana courthouse. ¬†It’s a gorgeous space and we both love history and this reinforces our local ties. ¬†Plus, it was a no-hassle way to do the business of marrying. ¬†I was surprised by how beautiful it felt to take Stijn’s hands and recite vows as I looked into his eyes. ¬†Our family sat on rows of pews around us.
flowers and bracelets

-for our reception we served drinks (sparkling water, juice, champagne, beer, wine) and cake.  The cakes were from Blackmarket Bakery: Total Eclipse, Citrus Tang and Straight Up Vanilla.  Were I to do it over again I would double the order of the Citrus and cancel the Vanilla (which was tasty but not ohmigawd tasty like the other two).  Several guests mentioned that the Total Eclipse chocolate cake was one of the most decadent that they had ever tried, and others complimented the fact that the cakes were rich but not too sweet.

-for the wedding dinner chefStijn and chefCharlie cooked a traditional Belgian dish, vol-au-vent.vol-au-ventThey also served a variety of cold salad starters and a cheese course accompanied by loaves of Stijn’s¬†own handmade rustic sourdough bread. ¬†While I don’t necessarily recommend cooking your own wedding dinner(!), anyone who knows Stijn can understand why this was what he wanted to do. That Charlie was there to lend a hand (and also his partner and honorary bridesmaid¬†Bonny) is why we were able to pull this off…

dinner time

-both our¬†engagement and wedding photos¬†were taken by longtime friends, who understood me and my style. ¬†D’Arcy‘s colorful¬†shots captured our home well (and were perfect for our event invitation) and Brenda’s classical eye¬†matched¬†the look of the¬†old-timey courthouse venue.

invitation

-for my something borrowed, I wore vintage gold bracelets (handed down from grandmothers and great-aunts) on loan from some women that¬†I’ve known for many years. ¬†I loved wearing something so old and precious for the occasion.
Jana&Stijn_4324

-because we have just about everything we could possibly need or¬†want, we asked guests to consider two nontraditional options in lieu of gifts. ¬†The first was to bring books for our Little Free Library, the second was to consider a donation to¬†RIF (Reading is Fundamental) or to First Book (see¬†firstbook.org). Although I don’t yet have a definitive tally, my rough estimate is that about $500 was donated to these organizations as the result of our wedding. ¬†Of course we also received many sweet cards and gifts (especially plants, wine, kitchen goods and gift cards), and we have enjoyed¬†each one of them.

-we married on a Friday (the exact 6 year anniversary of our first date) and that night we escaped to The Ranch in Laguna Beach, where we had dinner and sat in front of the fire sipping wine and hardly believing that we were actually married.  It was a perfect relaxed but not-too-far-away setting for that first night together as a couple.

fire and wine

-most importantly, our wedding included so many beloved friends and family members and this is what made it truly memorable. ¬†I marveled at how far many had traveled and how enthusiastic they¬†were about supporting our union. ¬†These past 6¬†years, since meeting Stijn, have held so many highs and lows, and it’s those people who’ve been ‘there’ for us (both in-person and virtually) who have made this all come together.

the crowd

As for what it feels like to be married to Stijn…I’ll undoubtedly write more about that in the future. ¬†It is not a small thing to combine families and traditions that span the breadth of the globe. Yet for now it¬†has hardly sunk in and I am eager to see what’s next for the two of us as we chart the rest of our lives together.

legacy bio, or what happens when you log in to blogger.com after more than 10 years…

Screen Shot 2017-02-07 at 1.48.43 PMRecently I logged into blogger.com while I was teaching a workshop, and when I did so my legacy bio from 2005 popped up onto the screen in front of the audience.¬† It was a bit embarrassing to see my just-barely-in-grad-school self on that big screen and to realize just how much time has passed in the interim.¬† I don’t live with any of those people anymore (I’m over 6 years divorced from John and the kiddos both live in their own apartments in different cities from me) and I’ve long since finished my Ph.D.¬† While I still enjoy my afternoon cuppa and I do spend a lot of my discretionary time gardening, I rarely define myself by those hobbies.¬† Of course I am still a cancer survivor and I am still am amputee, but I would probably not advertise those aspects of myself in front of an audience while I was speaking on a professional topic.

This is a pretty good example of how the internet doesn’t forget much, despite the fact that I’ve rather strategically moved my URLs around enough that my decades-ago blogwriting is not so easily discoverable.¬† It still happens often that near-strangers will mention to me that “they’ve been reading my blog…” and I am left feeling like I’ve just left my junior high school diary open on a park bench.

So perhaps this is the perfect segue to an announcement about the talk that I’ll be giving at my alma mater on March 1st.¬† It will be an opportunity to reminisce a bit about my life as a blogger along with my colleague Jeff Wasserstrom.¬† If you’re interested in hearing some of my stories (including, perhaps, how it felt to have my decades-old blogger bio pop up in my workshop last week), please consider yourself invited to join in!

(And it is not without a large feeling of fondness that I note the location of this event is one of my former favorite UCI study haunts, which is now named after my best-ever UCI Bio prof). 

Screen Shot 2017-02-07 at 1.58.32 PM

 

Sunday thoughts

in the courtyard of the Mutter Museum

in the courtyard of the Mutter Museum

It’s the quiet before the storm here, a few days alone before the family arrive for the holidays.¬† I am still not used to the rhythm of the holidays sans children.¬† I put the ornaments on the tree myself, reveling in the memories of each one.

I still only use the same small batch of ornaments that we’ve collected over the years.¬† I wonder sometimes if the secret santa who gave us a set of cheap tin angels in 1992 ever thought that they would still be on our tree 25 years later, not to mention every ornament that I made in grade school, on our tree alongside the ones that my children made.¬† Though it would be so easy to buy new stylish decor, I never feel the impetus to do so.

Which reminds me of a conversation that I had at a holiday party last weekend.¬† I met someone new and mentioned that I’d moved to Orange just as soon as my kids finished school in Irvine.

“Weren’t they sad about your selling the family home?,” she asked.

It was a stranger, one I wasn’t ready to fill in on the backstory of my patchwork life.¬† I am not sure how she would have made sense of our moving eight times in those last three years while the kids were finishing high school.¬† While I can so easily tell the stories of the rat house, the whale house, and that time that seven sailors were sleeping in the living room, I didn’t this time.¬† I simply said that we were all ready for a fresh start…

I had a similar feeling a month ago when a colleague asked how I was spending Thanksgiving.¬† I told them I was skipping the holiday and traveling to Philadelphia to visit my daughter.¬† I could see that they don’t really understand why I would opt out of the TDay to wander a strange city on my own and pop in to visit Em on her campus.

But it was a lovely trip.¬† The weather so cold and so bright.¬† When she wasn’t busy studying we went to the Mutter and the Barnes and the map room of the downtown library.¬† She showed me her favorite study spot in the campus library and her favorite trees.¬† We had coffee at Hobbs and water ice at her pizza place and noodles at her noodle place.¬† We found a swingset by the Friends’ Meetinghouse and swang and swang.¬† I felt the pull in my stomach as I pumped my legs up into the air I swung back and forth and felt so young and so old all at the same time.¬† Remembering myself as a young girl who wanted to swing so high, always reaching out my toes into the big blue.¬† And remembering the hours (upon hours) that I pushed Em in the playground swings, relishing her squeals as she flew higher and higher and further away from me.

When I wasn’t with Em I walked and wandered Philly.¬† I stood in line for Independence Hall and went on the tour along with the schoolchildren and families, all of us rubbing our hands together and stomping our feet to keep warm while the wind whipped at us as we queued.

It was all worth the wait when we finally got inside and the tourguide told us about the signing of the declaration, reciting those famous words in a practiced voice:

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness…

I looked out the tall windows into the courtyard where we had just waited, to see dozens  still in line.  The wind was outside was gusting, and yellow leaves were swirling and dancing in the golden light of the winter afternoon.