Rediscovering Me

December 5, 2011 at 12:55 pm (Uncategorized)

Something strange happened to me the other night. I actually enjoyed being in my own skin.

I went for my first ever soak in our hot tub. I lowered myself dubiously into the vat of boiling and bubbling water. I emerged, steaming, like some kind of post-modern Venus. In between, I hung out in my own body.

Most days, I don’t even think of my physical self, except when I walk by a mirror and do a double-take. “Really? That fatso is me?” Usually, though, I regulate my mirror crossings, and have imposed a rigorous lock-down on body thoughts. When I soap my limbs in the shower, I focus on getting a good lather, not the flesh beneath. I listen to a book on my ipod when I get dressed in the mornings. This helps shut down the self-loathing that would otherwise occur when I encounter my pants size.

I’m being brutally honest here. It hurts to write, and I’m sure it will hurt a little to read this. But I think we women of middle age don’t often think or talk about how we feel about our changed and changing bodies. We live in a culture that glorifies youth—and firm flesh and wrinkle-less brows—that aren’t possible once you’ve crossed out of your twenties without the intervention of surgical or cosmetic procedures. It’s a tyranny of appearance. The billions of dollars of cosmetic ads don’t concern themselves with holding onto or regaining the function of a youthful body. They’re all about looking young, looking thin, and looking beautiful.

I hate being fat. There are some very good reasons why I am 100 pounds heavier than I’d like to be. Nearly 8 years ago I was diagnosed with sarcoidosis. I didn’t get the friendlier version of the disease that spontaneously goes away after a few months. I got hammered with chronic, systemic sarcoidosis—a disease that has infiltrated nearly every major organ (and a host of minor ones too). I had just given birth to my first child when I was diagnosed. I was obsessed with losing the final 10 pounds of baby weight, when I got put on high doses of prednisone. Prednisone is a life-saving drug. It is also a nightmare of a drug. One of its main side-effects is weight gain. Fortunately, I’m not still on 80 milligrams of prednisone daily, as I was for a couple of long and difficult years. But I’ve never once been off prednisone in the last 8 years.

Before I got sick and before I had a baby, I was athletic. I was a national-class cyclist as a teenager. After I hung up my racing wheels, I became an avid hiker, gym rat, recreational cyclist, and fitness buff. I loved being fast and strong. I loved riding my bike for fifty, seventy-five, a hundred miles—and sprinting at the end. I loved bench pressing and leg pressing. I loved being able to go for an hour at the highest level on the Stairmaster. I loved hiking up mountains, carrying a heavy pack with everything I needed for a week in the backcountry on my back. I loved laying in bed and flexing my leg muscles and watching my quadriceps ripple beneath their cover of skin. I loved being absurdly flexible. I loved my body and all it could do.

As I gained all that weight on the prednisone and as I got sicker, exercise became more complicated and more difficult and more painful. Before I got my defibrillator implanted last year, my cardiologist would furor his thick brow whenever I asked about taking up exercise again. “I suppose it would be OK,” he said tentatively. “As long as you keep your heart rate low. But we just don’t know about the relationship with heart stress and cardiac events in people with cardiac sarcoidosis.” Cardiac events are White Coat-speak for major heart attacks. I had cardiac sarcoidosis. The prospect of dropping dead on my recumbent bike somehow leached any interest I had in regaining fitness. Then the sarcoidosis entered my joints. The disease caused spontaneous stress fractures in my feet. I was in a cast for half a year. Even my unbroken bones ached and throbbed whenever I tried to take up exercising again. I’m sure if I had pushed myself to try a new kind of exercise like yoga or Tai-chi, instead of forcing my new heavier body into my same old routines, I might have had more success. But I was in chronic pain. I was frightened. Everything else in my life had changed. Taking up a new movement routine was just overwhelming. By the time the sarcoidosis moved into my brain and my cranial nerves and caused debilitating vertigo that kept me literally bedbound for two years, I had already given up exercise and the pursuit of physical strength.

Since I’m being brutally honest here, I’ll add that I also did a lot of overeating. I would wait until Jay and Andrew were asleep, and then cruise through the refrigerator in the darkest hours of night, polishing off pies and cakes, cold pasta, leftover steak. I would eat several big bowls of the sweetest cereal I could find in our cupboards. I would eat until my stomach hurt and it felt like I couldn’t breathe. I’ve learned since then that this was “emotional eating.” I was eating to stuff down feelings, to assert a sense of control, to manage my anxiety. I also believe that I was eating because it was the only physical pleasure I had left. The rush of sugar, the crunch of pie crust, the slippery warmth of fats on my tongue made me feel alive.

My body was no longer a source of strength and joy. It didn’t carry me up a mountain, or fly me down a hill. Worst, it was disease-ridden and alien to me. Hidden from sight was this lethal sickness that moved through me like an insurgent force, destroying the very body that contained it. I spent a lot of time thinking about how to eradicate the disease. I subjected myself to every test my doctors dreamed up. I wanted access. I wanted to know what was happening within the subterranean folds of my liver, my brain, my skin. And I wanted to kick the shit out of this disease that was so effectively fucking up my life. I would have swallowed rat poison if some White Coat had told me it would help.

In my forthcoming memoir I describe this process of part-alienation and part-obsession with my diseased body as the creation of my Medical Body. All those years of getting poked and prodded, measured and observed, treated and tested, changed how I thought of my own flesh and blood. It became easier to talk about my own body in the same distant and medicalized language of the technicians and White Coats who tested me. Instead of saying, “I’m scared about dying,” I quoted scientific journals about the “survival rate” of “people with cardiac sarcoidosis.” Instead of saying, “I’m really hurting,” I could rattle off my blood sedimentation statistics and the neurologist-speak number of the cranial nerve that was causing me debilitating headaches. Instead of hoping to get well, I swallowed everything the doctors gave me. I used to joke that it was time to amputate my head. I’m not sure now this was all humor.

Through all of this I’ve muddled along. I’ve bought bigger pants and avoid mirrors. I don’t look too closely at my body or feel it too deeply. Turns out, this is a really crappy way to live, especially for a writer. Shutting off connection with your own body doesn’t make a good starting point for exploring truths and writing what’s real. Plus, it makes me a lousy role model for my son, who I’ve noticed has inherited his mother’s food-wolfing and use of sweets as a pick-me-up. If I’m not going to do better for myself, I’ve got to for Andrew.

Like all big changes, my move towards rediscovering my body hasn’t happened all at once and isn’t often planned. It’s not like I’m scheduling quality time in front of a mirror. But I am—more often than not—trying to push myself a little when it comes to caring for my body. Instead of always trying to lose weight, I have shifted (with some difficulty) to thinking of my relationship with food as being not about counting calories but about eating to heal and nurture myself with healthy foods that provide energy. When I’m not hurting too much, I’ve been pedaling gently on my exercise bike for ten minutes. I’m contemplating trying out the yoga studio near my office. In the shower, I’m paying attention to the warrior body beneath the soap suds. My body has endured so much, fought so valiantly, persevered through pain and illness. It deserves praise and love – not recrimination for not being what it once was.

Still, it’s not an easy process for me—to think of my self as innately strong and lovable, rather than because of how much disease I can beat or how many miles I can ride. So, the other night when the sarcoidosis in my joints began to act up (an unfortunate new development), my inclination was to take a pain pill, listen to a trashy book, and forget about my hurting body. But I got this quiet yet insistent feeling that I should soak in our hot tub. We’ve lived in our “new” house for over a year, but we’ve only recently gotten the hot tub that came with it up and running. It was late—and snowy and cold. Jay was nestled beneath the blanket. Andrew was asleep. Did I want to venture outside? What was I hoping to achieve? My hand went toward the pill bottle. I could have a bowl of cereal. No, I would try this.

Jay helped me heave the heavy cover off. It’s only two steps from our bedroom door, but they were snowy and slippery. I was shivering convulsively by the time I climbed into the tub. It took a couple of minutes for my body to recognize that it wasn’t cold anymore. Then the warmth flooded through my skin, worked down into my muscles, and into my aching and brittle bones. My throbbing joints released their pain for the first time in days.

The warm water lifted and held my 100-pound overweight body. I could have weighed a thousand pounds and still I would have been weightless in the strong, open arms of that water. I floated. I sighed. I located the button to turn on the jets and pressed it. The water roiled and snaked around me. I lowered my aching neck to one of the jets and let the water pound out the soreness. It sounded like the surf.

It took a few minutes for me to get brave enough to turn on the interior light on the hot tub. Here I was, alone on my deck under a moonless sky in the darkness, and still I felt shy. I hesitated. I pressed it, and then quickly pressed it off. But I liked the small taste of the weird green light I’d seen before slamming it off. So I turned it on again. My big white body was lit up with light that looked like concentrated fireflies. I bobbed and floated in this primeval light. I was big and I was buoyant.

I stayed out there floating as the moon rose and glinted off my expanse of skin and the snow. I shimmered along with the water and the earth and the sky. There was no room for shame beneath that giant sky. There was nothing to do but look at myself and look at the sky. I liked what I saw.

As we approach the New Year, how are you feeling about your own skin and bones? Do you like what you see?


  1. Allyson said,

    I’m glad you found the courage to try something new – the hot tub. I could not believe how the pain of natural labor melted away when I got into the birthing tub. It allowed me to relax after five hours of heavy contractions and my son popped out just ten minutes later.

    Now I’m working on the last few pounds of pregnancy weight and as you say, it’s all too easy to be cruel to ourselves instead of embracing our “warrior bodies.” I will start reminding myself of this instead of looking at myself in disgust.

    What a long journey to travel in one single blog entry! Thank you for taking us with you.

    • Rebecca Stanfel said,

      Thanks, Allyson. I’m so glad it resonated with you.

      Birth is the warrior body. I never felt stronger and braver than when I went the distance to bring Andrew into the world. I wish I could have used the hot tub. For medical reasons I ended up not being able to use it (at the last minute, which was kind of frustrating because it was a core part of the birth plan Jay and I crafted with our midwife), but oh well. I’m glad it worked for you. I went back in last night and it helped so much with the pain. And I got to watch the moon rise. Amazing.

      Thanks for being on this writing journey with me. I so appreciate all of your thoughtful comments.


  2. Marianne said,

    I’m sitting here figuring out how to lose weight before I turn 40. But I am trying to find a place where I am happy being me. Because once I lose this weight, I will find that I may have the body I want in weight but there are now lines… So it is just a constant battle being happy with who we are.

    • Rebecca Stanfel said,

      It is a constant battle.

      I have an easier time losing weight if I approach the whole process from that “place where I am happy being me” as you so nicely sum it up. When I start a diet or an exercise program from a place of self-loathing (or even my knee-jerk moderate self-dislike) it just doesn’t go well.

      Wishing you luck in drawing the lines and getting the scale to the places you want.

      Thanks for reading and being such a loyal commenter. I love getting your often witty and always succinct comments.


  3. Randy Bekkedahl said,

    Thanks again Rebecca. Your comments hit home again. I, too, used to be athletic, but am now way overweight and have trouble just putting my clothes on. And I’ve been on 80 mg of prednisone for a long period (one year) when I was 21 years old. And untold numbers of shots, short courses or prednisone, long periods of low dose, etc. I’m lucky now because of the new biologics–they work very well controlling the inflammation. Right now I’m on Symponi and it is working wonders. The first biologic the white coats put me on was Remicade. It worked like a miracle, clearing up all the inflammation and all the psoriasis. But then I had an allergic reaction to it and switched to Humira and good old methotrexate. I’ve had a love/hate relationship with methotrexate for over 25 years. Actually, it’s mostly hate. But it works in combination with the biologics, though it never worked on its own. My liver is showing signs of excess scarring from the methotrexate, but I try not to think about it.

    Anyway, now I just deal with the damage caused by years of inflammation–fused back, fused neck, frozen right shoulder, numbness from nerves in the back being pinched by bone spurs, that sort of thing. Right now I have a case of uveitis going on in my left eye, which means the Symponi isn’t working 100%, but it beats the old days. And of course, now they will prescribe pain killers for chronic pain when in the past they didn’t.

    Thanks again for being so brave to writie like you do, it means alot to me to read it. I’ve had a crummy week and am feeling very grumpy, but reading someone else with similar problems and feelings and emotions is helpful.

    • Rebecca Stanfel said,

      Thanks for another wonderful comment, Randy.

      Wow! We have been on almost all the same meds. I haven’t yet had the pleasure of trying Symponi. And I couldn’t hack the methotrexate. That’s how they ended up putting me on Cytoxan for those long 18 months. As I write this, I’m realizing again that so many of the medicines for auto-immune diseases are just hard–hard on the body, hard on the soul, hard on daily life.

      I don’t feel very brave. But I am glad my writing resonates with you. Your thoughtful and generous comments certainly resonate with me.

      I’ve heard the uveitis is incredibly painful. I hope it clears up and that your week i improving with each passing day.

      Thinking of you,

  4. Barbara Barnes said,

    Rebecca… that took guts! I am still overweight… dealing with a new phenomena of not being able to get below a certain number and stick there. Even my motivation to be able to ride better does not seem to be enough to thwart my emotional eating. I believe the less we keep those secrets, the less we can be harmed by the shame we create. I am so glad for you that you are allowing mercy and appreciation to enter the equation of your body talk. Thank you!

    • Rebecca Stanfel said,

      Thank YOU, Barb.

      If I didn’t know that people like you and all the others who have joined me on this written journey were reading my stuff, I’m not sure I would have the courage to write it. And yes, secrets and shame aren’t the way through this. It’s like your great grandmother said…a little air.

      I learned a lot about being open to mercy and appreciation from my years of body work with you. Thank you.


  5. Amy Pridemore said,

    What you described, as hard as it was, was beautiful, as you are. Beautiful.

  6. Rebecca Stanfel said,

    Thank you, Amy. Thank you.

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