Category Archives: body

sweat

While 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.

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anniversary #33

Today, 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)

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…)

Sunday evening

Yesterday I went to the farmer’s market, my mouth watering for the heirloom tomatoes sold by my favorite vendor. I bought two last week and they are the tastiest tomatoes that I’ve had that I haven’t grown myself. She had just three left and I bought them all. I had the first on a salad of spicy lettuce for my lunch and it was just as good as I had hoped it would be.

This morning I spent my extra hour in the garden, talking to our winter tomato plants that are just beginning to blossom. They are thriving in this not-winter weather and I expect to have fruit soon. I suppose we’ve gone a bit overboard, as we always seem to do, and I am looking forward to having the problem of too many tomatoes.

This afternoon I went to an intensive yoga workshop, “on the ropes.” I hung upside down and did forward bends and backbends while suspended in loops of heavy rope hanging from the walls in my teacher’s studio. While I suspect that I will be moving a bit slowly tomorrow as a result of my time hanging around this afternoon, it is such a delicious feeling to stretch and bend and twist and breathe into my body. To push it harder than I think it can go. As I walked home from the workshop I marveled that this is the thing that is middle age. To have the freedom and the flexibility to choose to exercise for an afternoon just because it’s what I want to do.

And then afterwards I puttered around the house doing laundry and cooking dinner and watching a bit of Netflix. A pair of missionaries knocked on my door as I was puttering. When I answered the bell they greeted me by name, saying that they’d just received my contact information and that they were excited to meet me.

I was still wearing my yoga clothes, my bare shoulders revealing more than my tan lines. I knew I couldn’t invite them inside, because I am an adult woman at home alone and that would not be appropriate. They smiled and they told me they were from Utah and Texas and asked if they could come again soon. I was tempted to tell them to google me when they got home, but instead I thanked them for their kindness and explained that I would not be interested in future visits.

I looked in their eyes and saw my brothers and so many other young mormons I have loved. I wondered which one of them had shared my address with the Church and wondered if they knew how sad I was to have my location known to the local congregation.

They asked how long I had been a member and I told them it has been for all of my life.

In that moment I remembered being wrapped in white linen, when holy oil was swabbed on my forehead and scalp and clavicles and spine, when I sat on a throne and was anointed to become both a priestess and a queen. The details are still vivid, despite it being an eternity ago.

I wished the missionaries goodnight and turned off the porch light after they exited the front gate.

It’s a Known Issue

We just barely saw the sun through the clouds as it slipped into the horizon.

“I need some ocean air” I texted to him, as I was packing up to leave work. So I drove towards Newport Beach, picked him up from the office and we pulled a parking spot just as the sun was hovering close on the horizon. Then we hopped out of the car and headed across the street to the bench where we’ve sat so many times before to watch the setting sun.

I noticed that when I stepped off of the curb my knee felt a bit stiff, but I ignored that feeling. I was focused on the sunset and not on my gait. But then when we were about a foot from our bench, I dropped to the pavement. My knee had completely given way and had buckled underneath me.

The jogging couple walking behind us stopped abruptly.

“Is she okay?” they asked.

Meanwhile, I was gauging how bad it was. I’d fallen just as I should. No obvious scrapes or sore places, although I suspected that I’d torn a hole in my skirt. And I didn’t want to stand back up immediately, knowing that if I did I would probably fall right back down.

As the couple from behind us hovered in concern I almost said to them, “It’s a known issue.” But checked myself and said cheerily “No problem, I’m fine!” And they passed, confused as to why I was still on the ground.

It happened yesterday, too, this falling–on the blistering hot asphalt of a cafe parking lot, which was really not a very fun place to try to troubleshoot the malfunction. Because of that I almost headed into the repair shop first thing this morning, knowing that a failing knee wouldn’t be a plus as I navigated my workday. But the knee acted normally as I tested around the house and in the garden before heading to work. I figured that the fall yesterday was an odd blip and the quick reboot of the microprocessor that I’d done in the parking lot had resolved the problem.

But now that it’s happened twice, I’d say that it’s gone from a one-time blip to being a “known issue” that’s got to be escalated to a professional. Because falling can be risky (and painful) and particularly inopportune if I’m carrying food or my laptop.

So I’ll get a loaner knee ASAP and send mine back to the factory for service. And as I do so I will marvel at the fact that I can swap out my knee almost just as easily as I upgraded my iPhone last week, with all of the settings and customizations are preserved “as is” so I can get back to my everyday routine just as soon as possible.

returning

A view of the veggies #inthegarden #theresnoplacelikehome

A photo posted by @janaremy on Jul 5, 2015 at 7:02pm PDT

It seems a season of returns, for me. I just barely returned to work after having to take off three weeks due to an urgent medical issue. I am about to return to the classroom, after a summer away from teaching responsibilities. Earlier this season I returned to vegetable gardening, a hobby that’s been on hold for about five years. And perhaps most largely, I feel as though I am returning to being myself again, after several months (years, even) of struggling with health challenges that left me drained of my typical vim.

I have intentions of other returns, soon. As soon as my doctor gives me the thumbs-up, I will return to outrigger canoeing and to daily yoga and to evening neighborhood walks and to globe-trotting. I expect that not to be far away(!).

It seems that I also have the inclination to return to writing. For so many (many) months I simply lost interest. It felt like anything I wanted to say had already been said. Or that I simply wanted to read long novels and putter in the soil and giggle with friends and watch BBC comedies, instead of throwing out my thoughts at a keyboard.

But those writing feelings are coming back again. I don’t know if they’ll stick or if they’ll get subsumed in the other stuff that’s keeping me busy these days.

We shall see.

31st anniversary

Today was the anniversary of the day that I was diagnosed with bone cancer, probably the single worst day of my life. It’s generally a tough one for me, although some years are better than others.

Some small pleasures from today:

sharing my salmon dinner with Ellycat
lighting candles on the fireplace mantle of my new, but still empty, house. Imagining what it will look like once I get the furniture all moved over
teaching a workshop on one of my favorite digital tools, Zotero (because I can wax rhapsodic about the beauty of my footnotes)
some of my students dropping by the house, to chat and munch on cookies
walking to and from work, with confidence. Not taking even one single step for granted. Feeling grateful for mobility and strength.

it’s all about the cheese

a cheese plate, my typical way to finish a meal

About four months ago, after trying to make sense of various mysterious health symptoms, my physician suggested that I go on an elimination diet for awhile, specifically to eliminate dairy at first, but she also suggested that eliminating eggs or gluten might be in order if my symptoms weren’t alleviated. At the time my primary symptom was nausea, but I also often felt a sort of unspecified abdominal ache in the evenings, too.

Within a few weeks of the no-dairy, the symptoms became minimal. Because I noticed them when I ate eggs, I also eliminated those. And since then I’ve felt remarkably nausea and gut-pain free. A few times since I started the elimination I’ve tried a bit of cheese and I still cook with butter and I seem to be fine with that, as long as dairy is not a major category in my diet.

And somehow I made it through the holidays while sticking to a mostly dairy-free and egg-free diet, with very few temptations or frustrations (it helps, I suppose, that I love veggies and that I bought a Vitamix blender). It seems that as long as I don’t think too much about lasagna and souffles and rigatoni gorgonzola, well, I am pretty okay with my various eating options.

But then there are those days (today is one of them), when I am longing for a bit of comfort and it seems that that comfort has very creamy contours…

resolved, 2015

This second living room, this morning.

Our house has two small living rooms that are divided by built-in bookcases. Ostensibly the front room is the formal living room and the back room is the more casual living area. Simply because we don’t have much furniture, the back living room has been mostly-empty since we moved in. Several times we’ve talked about buying something for the space, but it just hasn’t been a priority (and as you can see, we still have the artwork for our walls piled up in the corner…)

So recently we decided that maybe we wouldn’t furnish the room in any typical way, but would leave it open and empty-ish as a meditation and exercise space. And this fits in well with my most important resolution of 2015, which is a carry-over from last year. And that is to practice yoga each morning. The second living room is the perfect yoga space: wood floors, morning light, and french doors facing the back garden.

I begin my practice with a headstand, aligning my spine and stoking the energy that I carry through to the rest of my stretching, which these days is mostly aimed at easing the tension in my hips and shoulders. And then I move to stretching with my nemesis, the foam roller, and then I do some strengthening exercises with some small dumbbells.

It makes a huge difference on my outlook for the day if I take the time for stretching before turning my attention to my work.

control issues

Some mornings I wake up realizing that all night long I’ve worried about stuff in my dreams, hashing and re-hashing things over which I have no control.

Last night was one of those nights.

I woke up early this morning, my mind racing with everything to do. And I was stressed out before the day even began (this, on the heels of a day where Stijn said that I was finally looking relaxed and “myself” again…). My morning fears were confirmed as I realized that my extra leg battery had gone missing and that it hadn’t charged overnight.

Sometimes I feel so vulnerable, where the inability to charge my knee will mean a loss of mobility and heaps of frustration (and pain). I’m not sure what to do with that vulnerability except to recognize it for what it is and to check (once again) that my batteries are charged and at the ready. I can’t plan for everything that might go wrong, but somehow I will still keep trying to do so.

The wooden ceiling of an ancient Beguine chapel.

But of course there have been days that everything has gone wrong (I’m thinking of that trip to China a few years ago when my new bionic knee completely malfunctioned) or those random moments where I’ve completely lost my charge or just a few days ago when my foot fell off while I was walking home from the market and I had to zombie-drag myself two blocks while leaning on Stijn’s arm. So far, I’ve survived just fine. Every time.

So why do I still spend so much time worrying?

PilgrimSteps

just one step at a time…