Being Right Here

November 11, 2008 at 1:22 am (Uncategorized)

This entry was prompted by Nancy’s comments to my last post. She said, “You are the Mom you are meant to be right now. That Mom is sick, fighting a disease, living what she can right now. Be what you can be and let the rest hit the floor and kick it aside.” Thank you, Nancy.

Something remarkable happened to me recently. I was alone. Truly, utterly, and absolutely alone. It was wonderful. It was also a tad terrifying. But by the time my family returned, I had put my aloneness to good use.

Andrew and Jay left on a Saturday after Andrew’s final soccer game of the season. In a whirlwind of last minute packing, of shucking off cleats and shin guards in exchange for traveling clothes, of two cold noses pressing against my face to say goodbye, they were off to the airport. Jay had a work conference near where my brother and his family live. It was an opportunity for Andrew to spend time with his older cousins, as well as a chance for him to get a break from Sarcoidosis-Central. It concerned me that my not quite five-year old had memorized the list of drugs I take, simply by listening to me discuss them with other people. While I’m happy to know that he’s smart enough to retain words like Cytoxan and Remicade and to deploy them casually in his everyday lexicon, I was also appalled at how closely he monitors my health and how deeply invested he is in my medical regimen.

I’ve been grounded (literally), so it was impossible for me to accompany Jay and Andrew. Since I’m taking four immune suppressants, my doctor has warned me not to enter the germ incubators we commonly call airplanes. I had disregarded his warnings right after I started getting chemo every other week, and Jay and I had slipped off to Portland for a long weekend. Our trip was lovely, but I became dreadfully ill a couple of days after we came home. I’m still on antibiotics to fight the infection I picked up 30,000 feet above the earth.

I was also simply too sick to travel, even if I wanted to flout the doctor’s orders again. I had gotten a dose of chemo on Thursday, so by Saturday I was nauseous, exhausted, and felt like a few thugs had taken me into a back alley and kicked the crap out of me. (Who knows? Maybe they’ll recommend that as my next treatment.) I was even feeling too lousy to micromanage Jay and Andrew’s packing operation. This in itself was remarkable. If micromanaging ever becomes an Olympic sport, I’ll take gold. I usually trail after Jay with four different lists of things to pack, poke around to see what he’s put in the suitcase, inquisit at least a dozen times if he really did pack sunscreen and floss and whether he has enough toys to entertain Andrew on the plane. In my quest to be “helpful” and make sure everything is up to snuff, I drive Jay utterly nuts. It was a testament to how horrible I felt that I just stayed in bed, listening to my latest audio book, rather than shuffling around and meddling.

I did rise from my tangled sheets to give goodbye hugs and kisses. I stood dutifully in the window and waved with as much energy as I could muster. And then I cried for half an hour because I desperately wanted to be going on a trip rather than staying home to optimize my body’s absorption of chemicals. Eventually, though, my tears dried, and I was engulfed in the absence of sound. Clichéd as it is, there really is a sound to silence. It is impossible to put this sound—or soundlessness—into words. There is a physicality to silence, as if one’s skin rather than one’s ears detects it. Silence brings an inaudible hum with it, notes that, like whale song, play on a register below consciousness. A few hours after Andrew and Jay left, it began to snow for the first time of the year, and the low-lying clouds, the inches of snow piled on the deck, only deepened the silence. I felt enveloped by it, acutely aware of every noise the appliances made, of the sound of my tread on the floorboards, of the wind against the windowpanes.

If you have never had children, I think it is almost impossible to appreciate the feeling of an empty house, particularly an empty house without the prospect of someone returning soon. Andrew is loud. I can always hear him talking and hopping, calling out to Connie or Andrea or Jay that he is launching his rocket off to Word World, that he has brought home a baby dragon named Madrigal for a sleepover. “Don’t worry,” he’ll say. “Baby dragons haven’t developed their fire breathing yet.” And even when he isn’t home, I know he’ll be back soon. The echoes of his stories linger and wait for his return. With his presence so palpable, the minutes I have to write or to sleep feel stolen. Always in the back of my mind a clock is ticking. Forty minutes until they’re back. Twenty minutes. Ten minutes.

This was different. Jay and Andrew were going to be gone for nearly five days. Five days! I was at once exhilarated and terrified. I had never been apart from my son for this length of time. My mother wanted to come be with me, in case the after-effects of the chemo were worse than expected, or in case I took one of my vertigo-induced tumbles. But a voice inside me, a steady, quiet voice, told me that it was important for me to be alone, without the prospect of a caregiver stopping by, or Jay and Andrew returning from their usual Saturday morning outings to the Farmer’s Market and Costco.

The last time Andrew and Jay left for a few days was for Jay’s father’s wedding, and I used that quiet to blast through a book proposal for a memoir based on my experiences of getting a kid and sarcoidosis at nearly the same time. Part of me wanted to do something similar during this period of solitude. An agent had nibbled at my proposal, and wants me to send actual chapters. “Great!” said the hard-driving inner voice that forgets how incredibly ill I can feel, “I’ll spend five days writing and writing.” Luckily, another–saner–part of me realized that writing twenty minutes at a time is about all I can handle, and that even so small a goal would be impossible after chemo, when rolling over in bed feels like sprinting up a hill.

What I needed for these five days wasn’t the chance to produce something. Rather, it was time to think—about the inner guilt that was destroying my psyche as surely as if I were whipping my soul with a studded belt, about the pieces of me that refuse to admit that my life has changed irrevocably since my diagnosis four years ago, about the feeling that everything and anything I do is wrong.

When I could lift my head without feeling like barfing, I picked up an old journal and began to think about what my priorities are, right now. Sure, it would be nice to hammer out some chapters and possibly hook an agent; it would be nice to clean out the closets overflowing with shoes and clothes Andrew has outgrown; it would be nice to devise a workout schedule and stick to it, no matter how vile I feel; it would be nice to plan and prepare fascinating learning activities for Andrew and I to complete together; it would be nice to cook multi-course dinners from organic meat and produce; it would be nice to find a Japanese tutor for Andrew and a banjo teacher (the language he wants to learn, and the instrument he wants to play). All of these are noble goals. But are they priorities right now when I’m besieging my body with chemo and a host of other medications, when I have an extremely limited amount of energy to devote to a multitude of interests and responsibilities? No.

Scribbling in my old journal let my thoughts take shape. I realized that my priorities were fine: getting chemo and thalidomide to kick my sarcoidosis into remission; being the best mother I could be given some very limiting circumstances; writing; continuing to find a spiritual pathway to help me find meaning in my strange new life; making time and space in my life for friendships to become deeper; and focusing on my relationship with Jay. The qualities of my life I wanted to develop—as wife, mother, writer, friend, and spiritual seeker—were noble and good, but only if I could reframe how I viewed them and only if I could use my energy to work towards achieving these goals with my current limitations instead of stockpiling metaphorical missiles to fire at myself when I fall short of whatever arbitrary standard I set within me.

Reframing my goals means putting down the cudgel I use against myself whenever the house fills with clutter, whenever I sleep fourteen hours at a stretch, whenever I can’t summon the energy to write, whenever the dinner menu consists of various frozen foods, whenever I look at my thighs or my prednisone-puffed face and can’t recognize myself, whenever I tell Andrew I can’t read to him tonight, and on and on. This will be no small task for I have for better than three decades assessed myself based on what I have achieved, rather than who I am. It will mean believing that the people in my life who matter—Jay, Andrew, my brothers and sister, my parents, Jay’s parents, my good friends—love me not because I can whip up a four-course Thai meal or plan an exciting science activity for my son. Reframing means letting go, of truly believing that Andrew loves me unconditionally and that as he grows older, he’ll come to understand that I tried my best to be a good mother to him.

Mostly, though, reframing entails existing as I am in this moment and not fighting against the path I am now following. Living as best I can, trusting in my love and the love of family and friends, is proving more difficult than chemo, than my vertigo, than my headache, than my sarcoidosis. It means letting go of the past, as well as leaving the future for its own time.

I used my five days of silence to explore these ideas. Even when I wanted to stop thinking about the choices I do have—to live as fully and as wholly in each individual moment as I can—my mind returned to this idea again and again, much like your tongue seeking out the hole left by an extracted tooth. I am not always successful in reframing my view of myself and my place in the world. But I do find myself simply snuggling with Andrew in bed on post-chemo days, marveling at his liquid eyes, his golden hair, the care he gives to me, and worrying less about whether I am a good-enough mother.

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Still Here

November 9, 2008 at 3:05 am (Uncategorized)

Hi all–

This is Jay.  Rebecca asked me to post something quickly because she knows it’s been a while since she put anything up and she didn’t want people to worry.  The chemo has been absolutely kicking her butt, but we continue to hold out hope that it’s going to do what it’s supposed to do and send her into remission (all good wishes, prayers, etc. to that effect are more than welcome).  She also wanted me to say that she has been working on putting some posts together in her head for a time when she is able to sit at the computer without wanting/needing to vomit.  So please bear with her and keep checking in.  Thanks.

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