Author Archives: janaremy@gmail.com
Walden, the game
I am so in love with Henry David Thoreau and his beans, that when I heard today about a project to build an interactive video game to replicate Henry’s experience, my mind just kind of exploded. And now I’m beginning to imagine immersive virtual reality in a whole new way.
changes
My life has been full of unknowns this past few months. And then this past week, thing after thing has been falling into place–or at least reaching a point of certainty.
For example, we learned tonite that our apartment will not be among those that will be demolished this summer. We can breathe easier knowing that a move of our household is not imminent.
However, our Community Garden will be moved. This space that has nurtured student gardens since the 60s will never be the same in a new space.
So now I’m wondering if this will be the last year that I will see the blossoms on my Mother’s Day tree (gifted to me when Catgirl was a toddler)? I doubt the new Garden space will allow trees, so perhaps it can be moved to a home with a backyard that has a perfect spot for it…
water-therapy
This post is one of a series to support my 39th Birthday Wish.
After my amputation, the surgeon put a cast on the stump of my right leg to protect the wound as it healed for the first few weeks. He replaced the cast occasionally as the swelling decreased. The day I got the cast off for the final time, the first thing I did was head to physical therapy in the hospital’s swimming pool. What an amazing feeling that was to float in the water after weeks of being confined to hospital beds and wheelchairs…
I still feel more at home in water than on land. Here’s a picture of me taking a leap into Walden Pond last fall:
Having lost my leg at such a young age, there have been some times I’ve felt the loss very keenly. It’s hard to explain what it feels like to have such a significant part of oneself gone, but there’s an ache that’s similar to what I’ve experienced when a loved one dies. Last fall when I was in Denver for an academic conference, I did something rather unusual–I visited the hospital where I had my cancer treatment, and asked to view my medical files. I learned many things from going through those files, but the most profound moment was when I received the pathology images that included pictures of my leg after the amputation surgery. The images showed the extent of the tumor, via cross-section of bone and tissue.
To work through the complicated emotions that I felt about those pictures, I went to the pool for a long swim, taking the laps slow and hard while my mind chewed on what I’d seen. As the light cast dappled patterns in the water around me I felt past and present collide: I was a little girl with two legs, I was a young teen swimming for the first time after her surgery, I was a grown woman who was still making sense of her loss. I was swimming, stretching, remembering, and moving on.
On Turning 39…
This post is one of a series to support my 39th Birthday Wish.
Turning 39 feels awfully old. And I know most people, especially women, feel wearied by this number–with 40 looming just around the corner.
But here’s the thing: For a few years I doubted whether I would even make it to see my 15th birthday. That I’m still kickin’ at 39 is nothing short of a miracle to me.
Picture at left is of me during chemo. I’m wearing a wig and a favorite purple sweatshirt that a friend personalized for me.
The Ocean & Me
This post is about my experiences with the ocean, and is one of a series to support my 39th Birthday Wish.
My maternal ancestors come from the Isle of Man, a peculiar piece of land that’s situated in the Irish Sea. My ggggrandfather and his kin were ship captains, and were certainly smugglers like most who hailed from Manx ports. A few years ago when we visited the Isle we saw his warehouse in the main port city. We also saw the ancestral farmlands and the parish cemetery where nearly every headstone had a familiar name.
I didn’t see the ocean myself until I was 14 years old, having grown up in Oklahoma and Colorado. I’d just completed a year of chemotherapy treatments and my family planned a HUGE trip to California. My first glimpse of the ocean was from PCH, driving towards San Diego from LAX. By that time I’d already lost my leg and was ambulating rather precariously using crutches and an ill-fitting prosthetic limb. I don’t recall actually dipping my toes into the Pacific during that trip, though it’s possible that I did. Much of my memory of that era is long gone–which may be a blessing given how tough a time it was for me.
Shortly after that trip to California my family relocated from Denver to Bakersfield, which meant that we lived close enough to visit the beach a few times every year. However, because none of my prosthetic limbs were water-proof (or even water-resistant), I had to use crutches when I wanted to be on the beach. And the logistics of trying to “crutch” in the waves was so frustrating, I never went more than shin-deep in the ocean until about two years ago. Isn’t that crazy? My first swim in the ocean was at age 36! That summer John & the kids helped me do so by fetching my crutches back and forth as I needed them to enter & exit the ocean. And I had the opportunity to swim in both the Pacific and the Atlantic ocean that year because of our family vacation to the outer banks of North Carolina.
When I decided to take up the sport of outrigger canoeing, I met with my prosthetist and discussed the possibility of crafting a waterproof leg that I could wear in and out of the canoes. He’d never made a leg like the one that I wanted, but was willing to see what he could come up with! He ended up cobbling together a “pirate” pegleg with an ankle joint at the knee (the only waterproof joint he could find that could be locked into both straight and bent positions). There’s a little knob that I turn at my knee when I transfer from walking to sitting in the boat, that locks the knee in either position. Perhaps the most questionable part of this leg was whether it would stay on when I fell out of the boat or needed to jump into the ocean (such as in 9-man season when we change seats for the long races). The first time I tried was on a “huli drill” where I had tip our 6-man canoe to practice the recovery process. I was in charge of tipping the boat because I was the steersman. I can’t tell you how scared I was about that–not even knowing if my leg would stay on once I fell into the water, much less knowing how it would work to swim in the ocean with it attached to my body!
But what I learned from my huli drill & from the other times that I wore it in the ocean, was that leg does stay on and that it’s quite a gift to be able to walk autonomously from beach to water. Each time that I’ve jumped out into the waves and started swimming is a miracle to me. I don’t take it for granted even for a second! It took me 36 years to swim in the ocean and when I did, it felt so “right.”
I suspect that my love for the ocean runs gene-deep, coming from my island ancestors who sailed the seas. But whatever the reason, when I’m in the ocean I feel connected to the universe in a way that I’ve never felt in any other space. With the water buoying me up, the rhythm of the waves rocking my body, the sun warming my skin, and the thrill of the unknown below…it’s there that I feel the complete perfection of my life and this world.
Picture of me in the Atlantic Ocean with GameBoy and my little sister.
My 39th Birthday Wish
Many of you probably remember my birthday wish last year, where we raised over a thousand dollars for HandReach to purchase prosthetic limbs for Huang Meihua, a survivor of the Sichuan earthquake. What a wonderful experience that was, particularly because I was marking the 25th anniversary of my cancer diagnosis with that event.
I wanted to do something similar this year, and have thought a lot about what might be an appropriate organization to support with birthday donations. Because here’s the thing: I have everything I need and want. And my birthday would be so much more meaningful if we could “gift” something together. So I’ve got a plan…
But first, a story: Nearly two years ago when I was just starting to recover from my leg infection and wanted to “get healthy” again by exercising, I was chatting with my neighbor. I was telling her how frustrated I was with nearly every athletic activity that I’d tried, because I always had to ‘adapt’ the activity to me–to do different poses than the rest of the yoga class, to ride a heavy 3-wheeler instead of regular bicycle, and so forth. I told her that I wanted to find a sport that I could do without having to alter it for my different body. She then told me about some of her friends who had lower-limb issues (from amputation to blown out knees to nerve damage) who were outrigger or dragon boat paddlers. She then suggested that I try it out and told me about her team (IMUA Outrigger Canoe Club).
Well, most of you have already heard what happened after that…and you have been all-too-kind in indulging my paddling passion in the meantime…
So here’s how this is relevant to my birthday:
First and most importantly, I want each of you to think about someone you know that should know about paddling, and share my story with them. Tell them about the one-legged 39 year-old blogger that you discovered through the magic of the internet and let them know that paddling is the perfect sport for someone who has lower limb issues (or for anyone who loves the water and wants to move their body!). Send them the link to my website. Spread the good word of the paddle far and wide. Really, truly, this is what I most want for my birthday. I want to reach the folks out there who need to know that outrigger canoeing just might be the perfect sport for them. Here are some relevant links that you could send them:
My first race–when our boat tipped over just after the starting line
On Cancer, Canoes, & Connectedness
My thoughts after racing from Newport Beach to Catalina Island
So share this with your friends and drop a comment below to let me know how it went. I can’t wait to hear about it! To know that others might find paddling as satisfying as I have, would be the perfect gift.
Second: As I’ve become more involved in the outrigger community, I’ve learned that there are some “Adaptive” racing opportunities out there for those of us with disabilities. For example, you might remember that originally I’d planned on spending birthday #39 in New Caledonia, paddling for an Adaptive team at the World Va’a Champs. But our racing division was canceled because there weren’t enough Adaptive teams signed up for the event. What I’ve learned from this is that I don’t really need to paddle for an Adaptive team. Outrigger is a sport the ‘levels the playing field’ and I can compete with bipeds just fine. And this is where the second part of my wish comes in…
My Team, IMUA, has three lower-limb amputee paddlers. When I showed up on the beach for practice for the first time, no one suggested that I wasn’t “able” enough to compete with the team. Though team members were more than willing to make sure that I could get in & out of the boat okay (which, before I got my waterproof prosthesis, meant stowing my crutches on the beach above the tideline as we launched), there was never a moment where anyone suggested that I needed to be on a different team because of my disability. And the fact that IMUA has three amputee paddlers when I don’t know of any others in our league says a lot about our team’s openness. Not only do we have amputee paddlers, but we have paddlers with bodies of all shapes and of all ages (from 7 years-old to 70 years-old!). Some of us are elite athletes and some of us are just keeping fit. The diversity of the team is its biggest strength!
So if you’d like to give a donation to celebrate my birthday, I’m asking that you donate to IMUA in my name, to carry on the good work of the team that has embraced me this past year. Our team is doing so much good in the world of paddling–from sending a Senior Masters Team to race in Hawaii this week, to developing a full-fledged Children’s program that includes 3 groups at different age levels (my kids’ teams), to being the most enthusiastic group at the local races. To sweeten the deal, for everyone who donates $39, I’ll take you out on the water for your own personal outrigger lesson! We’ll go out for a few hours in the Newport harbor on 1 or 2-man outrigger canoes. If you’re not local, we’ll take a raincheck for the next time you’re in SoCal (because everyone tends to get down here for one reason or another!). My birthday goal is to find 10 friends who’d like to donate $39 for a personal paddling lesson. (Note: If you want to donate, send me the funds via PayPal to janaremyATgmailDOTcom. I’ll have a button up on my site in a day or two where you can make direct donations to the team, but until then, just send the money to me and I’ll pass it along to the team).
So it’s really simple, friends. Don’t bother with birthday cards or cake or anything like that. Just tell my story to someone that you know and pass along the link to this post and/or some of my other outrigger posts. And if you’re ready to join in the fun, pledge some money and we’ll get you all set up for your very own lesson. By doing this, you’ll give me a super gift. Because if we can share this sport with just a few friends and friends-of-friends who really need to hear that there’s the perfect mode of exercise out there for their particular body, then I’ll be thrilled! That will make my day and my year just perfect!
some lessons from the sea
Just returned from a family adventure to the Santa Barbara coast. Catgirl & I had races launching off of Leadbetter Beach on Saturday morning, so it seemed a great excuse for the family to “get away” for a couple of days. [Note: Why does “getting away” in LA necessarily mean hours of time spent fighting traffic (sigh). Next year we will plan better so we can take the train instead of driving…]
Our campground was one of those where there is more space for cars and RVs than for tents (hello, SoCal), and our campfire was only about 10 feet away from that of our neighboring site. But the location was incomparable. On the other side of that campfire was a chainlink fence and on the other side of the fence: traintracks! (oh, how I do love me a train!). Periodically the Surfliner and freight trains would come crashing through–so loud that the ground shook and it felt like they would soon come barreling into our campsite. Perfect! Oh, and on the other side of a row of RV campsites was the water–the waves crashing loudly against cliffs of natural bitumen. Scrambling along those cliffs was quite the adventure for us! Amazing shells, rocks and other wonders. Because we arrived at dusk we mostly explored the cliffs (at high-ish tide) in the dark that first night. As I sat on an outcropping with my legs dangling down far enough to catch the spray of the waves crashing beneath me, all was right in my world.
Saturday morning we arose before dawn to prep for our race. Catgirl launched with her canoe into the ocean around 8am. It was their first surf entry and their first paddle in the open ocean. When we could see that about a mile out a boat huli’d, we quickly asked some race officials whether it was the Keiki girls. But it wasn’t and they were quite safe and invigorated by their 4mi paddle! They hardly even look weary in this post-race photo!
Just after they returned, I set out for my own race, a 13mi triangle out on the open ocean. I was slated in an “Open Coed” boat with a new-to-me crew. I’d only paddled with the other two gals a few times and the three boys I met for the first time as we hopped in the canoe. My past experience with new-to-each-other crews is not so good–often it means that you don’t blend well or know how to support each other. I had resigned myself to having a tough (meaning: long and frustrating) race. On top of that, I’d been asked to sit in seat #1, which I’d only done a few times at practice, and never for such a lengthy race. Seat one is particularly tough because you set the pace for the entire boat. And every time you set your blade, you’re putting it into ‘dead water’ because you’re out in front. It’s hard to sit up there and keep a good rhythm for any length of time–especially out on the open ocean where you’re often taking the full force of the wind and waves and having to “keep time.” Adding to the difficulty is that you often can’t hear what’s happening in the boat behind you, because you’re sitting so far forward of the rest of the crew.
The race started and we were dead last. Last. In a sea of 50+ boats, that is pretty discouraging news, indeed. I tried to remind myself that I was paddling for the fun and experience and not just for medals. I was looking at the scenery. I was trying not to focus on all of those other boats out there in front of us, getting smaller by the second…
And then somewhere between mile three and five, something changed. Other crews that had started out fast were starting to fatigue. But I could feel that my boat was just getting warmed up. We’d figured out each other’s rhythms. Things were starting to gel (and, especially, the guys in seat 2 and 3 were keeping us all motivated). And then we started passing other boats. Two, then three, then four. More than I could keep track of. Seat #2 kept pointing out to me how tired those crews looked and how strong we were. We kept going. We neared one of the oil rigs off the coast–our first turning point. Kathy, our steerer, took that turn beautifully and we gained more ground. By the second turn at about mile 8, we were gaining on the other crew from our own team. I whooped as we passed, knowing that we weren’t supposed to be passing them. But…wow! In those last few miles the wind picked up and we started to get catch some bump. We were surfing the swells and then we saw off the left hand side of the boat a group of about 40-50 seals, all frolicking around us–undoubtedly curious about this odd group of canoes crossing their kelp beds. That sight alone was enough to give a second wind, but then I also heard the train off in the distance. It whistled as it sped by us on the coast (or was this just my dazed imagination? I’m not even sure now). I let myself feel that sound–the sound of an engine on its tracks–and kept my arms going, even though I realized that the paddle was feeling so heavy I wasn’t sure that I keep hold of it!
Heading into the finish line we were neck-and-neck with another coed crew–so close that I’m not even sure which one of us crossed first. We didn’t place in the top three boats of our division, but I do believe we were 4th or 5th–a huge change from dead last! After we crossed the line and slowly turned the boat around, one of my teammates pointed out the dozens and dozens of other boats still crossing the line behind us. We had passed all of those. It was more than I could wrap my head around.
I was so sore, I needed help getting out of the boat and walking thru the surf to the shore.
In a daze I wandered back to our team’s camp and ate and drank and curled up on the grass for a nap. I can’t even express just how great it feels to have worked so hard, and especially to have worked so hard as a team. I’m glad that they all believed in me, and that we kept powering through the race even though we had such a rough beginning. And I’m learning that that’s exactly what it means to wear the IMUA jersey.
Later that night we returned to the beach near our campsite and I had lots of time to think about what I’d learned.
Note: all of these gorgeous pictures were taken by John Nakamura Remy. How fortunate I am to be tied to a man with such vision. A full set of pictures from the race day are here.
chamomile
My garden is such a happening place right now! I’ve got tomatoes setting fruit, zucchinis bursting out in every direction, and my roses are still a-blooming! (oh and did I forget to mention BLACKBERRIES? I’ll probably have my first early next week. Yay!)
This chamomile is in a few random pots in a berm of flowers in the center of my garden. The red behind them are some crazy-prolific geraniums. If you ever want some geranium starts of your own, I am your gal!
moody
I’m in the mood for orange today. How about you?
Well, many of those unknowns have recently become decided. Our apartment will not be demolished but my beloved community garden (also on university property) will. I received my formal job offer this Friday. I also learned that I received funding to travel to an international conference in England later this summer, and the issues with my health insurance company were recently resolved in my favor. And I received word that I earned only one fellowship to support my studies this next year (at the Huntington Library–lucky me!).
Whew, there’s something so very comforting about having fewer unknowns looming on the horizon. I like to think of myself as someone who sees the world in a rather rosy light, but there are times when things seem so uncertain that it’s difficult to not let that overwhelm me…and eclipse my daily joys.
Last night I sat in the garden with two dear friends and started remembering all of the stories that are held in that soil. There are memories from when my kids were small and we saw fairies in the dew that gathered at the joints of the cornstalk leaves. There are times with sunflower houses, bean teepees, spontaneous potlucks, and BLACKBERRIES. There are bumblebees and gophers and rats and those damn peach-thieving squirrels. There are plants that just keep growing, and some that don’t make it after all. There’s mud and sweat and tears. There’s silence and birdsong. There’s the smell of lavender at dusk. And there is knowing that no matter where I go, I will always have a garden.