I got a voicemail from Florida the other day, from a woman I’ll call Tracy. She’d read a piece I wrote in Arthritis Today, something that grew out of a post here about how cooking and lupus collide. She was calling to relate.
It was the strangest thing, having someone ask me for advice on how to manage the disease. My first instinct was to tell her she had the wrong girl.
On Sunday, I called her back. I knew I could listen, but didn’t think I’d have much to say.
Tracy’s a personal chef, like I used to be. She has lupus, like I do. Only, she has an incredibly complicated case, a fat folder stuffed with the details of multiple autoimmune diseases. She’s had unusual reactions to all the medications that seem to help me, can’t find a doctor she likes, and doesn’t have health care. She’s lost three friends to severe lupus in the last year, and oh, friends, she’s so angry.
Talking to her reminded me how lucky I am, and how far I’ve come since 2003. I remembered how much I wanted an explanation, at first, like Tracy still does, even after living with lupus for 30 years – she wants a reason, a cause, a more accurate diagnosis.
It surprised me a little when she told me her story, and I actually felt I had advice to give. I wanted to articulate how I stopped being so mad at my body. (-ing, rather. How I’m stopping.)
There’s a calendar by my bed. Every morning, I mark it when I take my medication, and every evening, I keep track of the day – there are little notes about whether I’ve napped, how I’ve exercised, how I feel, plus any other little thing that comes to mind. It’s filled with complaints, too. (Left wrist hurting. Right knee snapping.)
The calendar keeps me honest. If I haven’t been napping, it tells me. If I’ve avoided exercise, it knows. And when I do something great for myself – get a massage, or paint my toenails, or pick flowers and arrange them in the heavy terra cotta vase my sister made – it tells me I’ve done a good job.
But no matter what the day brings, the calendar’s principle function is that of a constant caretaker. The physical habit of uncapping the pen each night reminds me that I’m in control, and that what I do every day – how I eat, how I sleep, how many Advil I take or don’t take, how much time I spend in the sun – has a direct impact on how I feel. I transfers the responsibility for my disease from some big, scary, overpowering force directly to moi.
I told Tracy about it, and asked if she did anything for herself.
“For myself?” she asked. “What do you mean?”
“You know,” I said. “For you, and only you. Not for dinner. Not for your clients. Not for your husband. For you.”
She didn’t understand.
I suggested she find a notebook, and make a list, over the course of a week or so, of things that make her happy, and to try to hold herself responsible for doing one of those things each day. We talked about chair yoga, and slow walks, and sitting in sunbeams, and taking a cut flower to a neighbor. As I wandered around the house, listening, my eyes grazed a greeting card my friend Beth gave me, years ago:
Oh, I do believe it’s true. No one else can make you happy. And from my experience, no one else can make you completely healthy, either. That’s up to you.
I’d never made a list myself, but as we chatted, I thought it sounded like a darn good idea. I realized how much more I’ve leaned on the little things, these last five years, to mask my frustration – just today, I obsessed about way a handful of cold cherries feels in my palm, and how the garbage can clatters across the asphalt when I bring it back in. Maybe it’s a convenient way to explain my OCD tendencies. But if you listen to them, I do believe life’s little pleasantries can begin to sound bigger than the worries.
When we hung up, I felt lighter. (I hope Tracy did, too.) I meant to make a list, but I didn’t.
This morning, though, trying to water the plants before the sun hit them, I found a beet in my garden. (My first beet ever!) Half the beets had bolted prematurely, so I pulled them all out, finding a good handful of little ones by the end. I was going to put them aside for dinner, for friends. But they called back.
I’ll just cut the tops off and wash them, so they stay fresh for a salad, I thought. My husband was heading off to work, and there I was, elbow-deep in a sink of cold water, playing with beet greens, enjoying the way the water iced my joints.
I’ll just trim them up a bit now, too, I decided. No sense in washing the cutting board twice, right?
I whiddled and sliced until they looked ready for a roast in the oven, but when I set them aside, they called me right back, loud as their stripes. Now, they insisted.
My deadline begged to differ. It’s been a crazy week (with not much cooking, if you hadn’t noticed), and the last thing I needed to do was make beet salad for elevenses.
But I thought of Tracy, and my nonexistent list. I could roast now, when I was really enjoying it and reveling in my garden’s newfound productivity, or later, tired, with dinner looming. So I roasted beets, at 9 a.m. on a Wednesday morning, simply because they were pretty. It meant that the beets weren’t for dinner, they were for me.
It felt like skipping class.
Sitting on the porch with the roasting pan, I started my list in a string-bound journal someone gave me months ago. I topped it with “sometime,” to separate it from the to-dos with actual deadlines. It only took five minutes, but it made me feel fantastic. I wrote things like rub the rosemary plant, and sit on the porch for five minutes on a sunny day. Nothing too intricate, nothing that takes too much time.
As I closed my book, I decided that while Tracy had been an excellent inroad for my own list, the journal would be good for any body, in any health. And sitting there, as the fog lifted off the Olympics, I almost felt luckier for not having perfect health.
I vowed to try to do something from the list, for me, each day.
So far, so good, I thought. But I might need a bigger calendar.
Roasted Beets with Oregano and Sherry Vinegar
There wasn’t much too it, really. There’s nothing fancy going on here. Just a half pound of trimmed baby beets, sliced up and tossed into a baby pan. (The skins seemed so fresh, I didn’t bother to peel them.) A sprig of oregano, stripped and sprinkled over the beets, along with a bit of sea salt and a crack of pepper. A drizzle of olive oil, and a dash of sherry vinegar. And time – oh yes, these beets need a bit of time, too, but not nearly as much as whole beets. I roasted them at 400 degrees for about 45 minutes, until soft when poked with a fork, then hit them with a tiny bit more vinegar before eating them straight out of the hot pan, with a fork, in the sun on the porch.