And You May Ask Yourself–Well…How Did I Get Here?

July 24, 2006 at 12:29 pm (Uncategorized)

Somehow on Saturday I ended up on Andrew’s bed, sobbing into his Thomas the Tank Engine pillow. Actually, I know exactly how I came to this place while Andrew was at the park with his babysitter Andrea.

Jay and I had begun to plan our weekend. It’s been really hot lately, so Jay got the idea to borrow a friend’s kayak and head up to a nearby lake. He’d gone without me before when I had pneumonia, and Andrew had adored being out on the water. It seemed like an excellent idea – until we started actually figuring out logistics. You see, I can’t paddle a kayak because of the injuries to my arm and neck. So Jay’s idea was to get around this impediment by ferrying me around.

Something inside me began to unwind a few minutes into our conversation. I felt like I had a frayed rope dangling down the center of my gut, and every snippet of conversation about boating and me unthreaded the rope a little more, and a little more, until…snap. Suddenly the thought of stuffing my overly large body into a swimsuit and parading in front of people was overwhelming. As was the thought of preparing for this adventure. The worst, though, was the idea that I was incapable of paddling across a few dozen feet of water, that I would have to be carted about like some bloated invalid, while Jay and Andrew and whatever friends we met up with frolicked in the water.

Rather than separate the threads of fibers uncoiling within me, I lashed out at Jay. “Oh, this will be really fun for me,” I said in my snippiest, most sarcastic voice. “Next time your bum shoulder is bothering you, let’s go skiing. But don’t worry. You can sit in the lodge and watch while I go on the slopes.” Jay paled. When I get mean and angry, I don’t respond well to any reply, whether its kind or cruel. I’m just a bitch. “I’m really sorry,” he said. “I didn’t think of it in that way. I was just trying to come up with a way that we could all have fun without straining your arm.” And I know that he was telling the truth.

I huffed and puffed around the house, before I began to feel incapable of standing or thinking or existing. When did my life become so unremittingly shitty? When did I become so uncomfortable in my own skin and so out of sorts with my physical self that I would prefer to cloister myself in a ninety degree house rather than don a pair of shorts? I felt horrible to have taken out the brunt of my emotions on Jay, but I wasn’t ready to apologize because I felt skinless.

So, I hid in Andrew’s room, lay down on his narrow twin bed, and bawled into his Thomas the Tank Engine sheets. I know I’ve talked smack about Thomas and the gang in the past, but on this occasion, I found the unblinking eyes of the trains quite comforting. They never grow old or sick or fat; they never ask me to buck up and get going. In the worst case scenario, Thomas and James might be a little naughty before returning to their usual “really useful” selves. I left a large smear of tears and snot on Thomas’ beaming visage before heading off to make amends with my husband.

Jay has been with me long enough to know that my meltdown over paddling wasn’t just me weirdly channeling my sadness and anxiety into matters of kayaking, like I sometimes transfer the entire burden of my illness onto a messy house and behave as though if we could just clean up our clutter everything would be fine. No, this was a genuine concern.

Up until a little over two years ago when I was diagnosed with cardiac sarcoidosis and put on a high dose of prednisone, I had been fortunate to have been able to pursue any physical activity I wanted (well, almost any – I haven’t been able to run since I blew out an ankle ligament when I was 18). Kayaking was a particular flash point because it was the last athletic activity I had been able to participate in fully, and as an equal, with Jay. When we lived in Palau – a tiny Pacific island nation between Guam and the Philippines– our favorite activity was kayaking in the bathtub-temperature water that was half a mile from our house. We would meet after work nearly every day, drive out to the marina, grab our boats, and paddle for a while. When we got overheated or just wanted a break, we’d tie up the boats and swim and snorkel in the open sea. I will remember until the day I die the sensation of floating above intricate castles of coral with schools of absurdly bright fish darting around us. We would sometimes hold hands as we watched this alternate world below us. Then, we would swim back to the kayaks, pull ourselves into them, and watch the sun set into the sea before we headed back for the dock. Darkness settles startlingly quickly near the equator; by the time we had hauled the boats back into their storage racks, blackness surrounded us.

Our sixteen-month stay in Palau culminated with our ninety-odd mile kayaking trip down the entire length of the country. We carried all our food and water with us, and slept on the open beaches of the uninhabited islands where we landed. We paddled next to sharks, swam with giant sea turtles, and hiked up the volcanic cliffs on some islands to see ancient ruins. It is still difficult for me to think (much less write) about this time because I was happy in a way I had never before been. Then we came back to the States, and I got pregnant. It was not a physically untaxing pregnancy.  (Among other things, Andrew parked himself on an old fracture in my tailbone and I could not walk without pain for the last 3 1/2 months.)  Three months after Andrew arrived, I got sick with the sarcoidosis. Everything has changed since those days on the sea, when we were carried only by currents and the strength of our arms.

But it wasn’t just my inability to paddle that I sobbed about with Andrew’s railroad friends. I love physically pushing myself. Jay and I backpacked for days in the wilderness, carrying our supplies and moving as lightly and as quickly as we could. When we went to New Zealand, we hiked at least twenty miles a day; when we visited the remote island of Molokai in Hawaii, we witnessed everything on our feet, not on the backs of mules as most tourists do. Here in Helena, we are blessed with amazing parks and trails right in town. We typically spent our weekends hiking up Mount Ascension or Mount Helena, or driving for longer treks to Glacier National Park. But now, I don’t think I could make it up Mount Helena with the weight I’ve got on my ass.

Long before I met Jay, I was a competitive cyclist. I’m not trying to brag when I say I was really good. I just was. I went to training camps at the Olympic Training Center with Lance Armstrong when he was just a raw talent coming out of Texas. When I was a fifteen year old girl, I was a lot faster than most of the grown men I raced against in Louisiana. Riding one hundred miles was no great shakes, just a Saturday training ride. Eventually, I quit racing because I grew up and wanted to do something besides ride my bike and obsess about how many fat grams I was consuming in a day, but I’ve always like challenging myself. When Jay ran a marathon in Seattle, I decided that what the heck, I would run the half marathon (even though I hadn’t really trained). It was fun.

While I intellectually know that the limitations I’ve had imposed on me with sarcoidosis (heart rate restrictions and such forth) are next to nothing compared to some people I’ve met who are hooked up to oxygen and unable to walk, much less hike up a mountain, I still feel acutely the loss of the activities I cannot do. Having a chronic illness, particularly one that incapacitates us in some way, involves a great deal of mourning – something I’m particularly bad at. I prefer to put things out of my head and pretend everything in my life is just fine. Clearly, this strategy isn’t as effective as I’d like, what with my sobbing in my son’s bed on a sunny Saturday.

So, here’s my question of the day: how do I grieve the pieces of myself that this illness has taken from me without succumbing to the disease? Is it possible to let the sadness into me in smaller doses than the Great Flood of July ’06? I have no idea.

I did, however, pay attention to the world of my old sport. Yesterday Floyd Landis won the Tour de France, which is, in my opinion, the most physically challenging athletic event in the world – ever. Here’s the thing, though. He did it with one functional hip. He’s had some degenerative bone disease for the past two years that has crippled him to most activities except cycling. I mean, the guy can’t really walk. He kept the condition a secret, even though he has been in chronic, debilitating pain. But he won the Tour de France. And he took home the yellow jersey in a particularly gutsy fashion. He was winning the thing, but then had a horrible day in the mountains and lost something like eight minutes in one of race’s stages. A lot of people would quit. They would say, “My hip is killing me, and now I blew my lead and all the commentators are saying I’m out of the race. I’m done!” Not Floyd Landis. He showed up to the press conference with a beer in hand, was noncommital, and didn’t succumb to direness. The next day, he gained back all that time, and went on to win the whole thing.

My take-home lesson from that is not to quit (and at least as importantly, to grab a beer after a bad day). How I can mourn a little and still not quit, I don’t know. But I did decide that I was being idiotic about the kayaking thing. So, on Sunday, we went up to a lake with our friend Martha and her daughter. I wore a bathing suit, and no one screamed and ran for the hills at the sight of my thighs. I even somewhat gracefully accepted a ride to an island with Jay in Martha’s canoe. And I had a ton of fun.


  1. Paul said,


    I wish I had something witty or profound to say . . .. but I’m afraid I don’t.

    I feel everything you’re saying – but remember that it is OK to have a bad day.

    I do agree that grabbing a beer at the end of the day (or as we say in Oz “cracking open a tinny”) can be as important as not giving up. Rejoice in the little things you can do ………..


  2. rebecca said,

    Good advice, Paul. Now, if I can just remember it’s OK to have a bad day. By the way, I’ve only been to Australia one time, but fell in love with you country (and New Zealand too).

    Thanks for writing.


  3. Lori said,

    “…. And though there are days we would rather know than now, I am,
    at heart, a scared and simple man. So I tighten my arms around the woman I love now and imperfectly, stand before “Juno” whispering
    beautiful beautiful until I believe it, and—when I come home at night—I run out into the day’s pale dusk with my broom and my dustpan, sweeping the coins from the base of the ginkgo, something to keep for a better tomorrow: days we would rather know that never come.”

    “Days We Would Rather Know” by Michael Blumenthal

  4. rebecca said,

    Wow. What a beautiful quote. Thanks.


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