My stepdad gave me a wooden box for Christmas one year. He’d made it himself in the garage, where he had always disappeared for long, mysterious, sawdust-filled hours. There amidst his table saws and plastic tubs of nails, his old metal vice clamps and long electrical cords, his wooden toy boats and half-finished furniture, he would have measured and cut the pine and cedar pieces into the shape of this box, fastened them together, and sanded and varnished their surfaces.
The finished box was about eighteen inches long, a foot wide, and six inches deep, with a beautiful lid that nestled into the top. On the lid, dark wood formed a frame along the edges with lighter colors in the center. It shone with a glossy finish, and was smooth and cool to the touch. I loved to run my fingers across it. Sometimes I would lift the lid and inhale the fresh-cut scent from inside: the smell of kindling, or freshly sharpened pencils.
I didn’t know what to do with the box when he gave it to me. But now, in the fall of 2014, I found myself occasionally slipping pieces of paper into it. They were scraps of life: lists and notes and thoughts, each somehow important to keep, but with no other place to be kept.
The lists. There were crossed off items from endless house tasks, things I was proud to have accomplished and also glad to be through with. Replace the strike plate on the kitchen door. Hang a shelf in the office. Hang another shelf in the bathroom. Repair the dryer vent. Install a pet door leading to the garage…
See what I’ve gotten done for us while waiting to heal? I wanted to say, to no one in particular. Ron already knew it was true. I hadn’t been earning money like him, but, I told myself, I had been earning my keep. My work was important, too…if not to the wider world. It was important to us–for building our nest, for our peace of mind. Hopefully for our future family.
There were lists of foods that, at one time or another, I could and couldn’t eat. First from Dr. Dahlman’s book; later from the Specific Carbohydrate Diet. Apricot is good, dairy is bad. Banana is good, soy lecithin is so-so. Peaches are good, cherries are bad. (Or, on the SCD: Carrots are good, if peeled and cooked and mashed; grape jello is good; any other jello is bad…)
Now I had moved on to my third diet and both of these lists were obsolete, but I didn’t want to part with them just yet. Both lists represented hours of intense poring over the pages of books and writing up my notes. In Madison I had magneted the lists to the fridge so Ron and I would know all my dos and don’ts. I wanted to keep these, too, for posterity, at least for now: Look. Look what I’ve done for my healing. Look how hard I’m trying. It seemed like I should be getting some kind of credit for it all.
One paper contained a hand-drawn body temperature chart. From June to August, before we had left Madison, each morning before arising I had taken my waking temperature and written it down, then painstakingly marked its place on this chart, each dot a little pinprick of hope. Over time, the dots on the chart rose and fell in a monthly cycle that correlated to ovulation. I was learning my body’s rhythms, preparing to conceive a baby even after my spring diagnosis, determined to make progress while I waited to heal. A bundle of ovulation test sticks had crossed the country with us, unused. Now they were stuffed in the back of our new medicine cabinet.
I slipped the chart quietly into the box.
It was November. I was struggling with increasing fatigue, and a new cough and fever that had begun plaguing me weeks ago–it rose and subsided but never seemed to fully go away. I spent hours lying around the house, helpless, while Ron was out teaching and earning our income and advancing his career. Sometimes it took great will just to force myself upright so I could conquer the tasks of the day, the errands and repairs and bills.
Sometimes, at my desk amidst my fatigue, surrounded by notes on how to start a bank account or install a security light or obtain a compost bin, some larger thought would worm its way into my head unbidden and threaten to overwhelm me. I would catch myself gazing into space and fighting back tears of despair, or even tears of hope.
Then I would reach for a blue or orange post-it, scribble the thought onto the little square of paper, pad softly over to the corner, and almost surreptitiously put the post-it note inside my wooden box.
I feel so angry, sad, and desperate. Lotion makes my skin flake, stairs make my knees hurt, I have to ration my time and strategize about energy, food–I only last so long away from home, or off the couch some days. I feel like I can’t breathe. I haven’t been allowed to be fully myself for at least 8 months, maybe 10.
Maybe I’m still on the path toward my Personal Legend, but just on a tangent for a while, like the boy in The Alchemist needing to work in the crystal shop because his money is stolen.
If I could be healthy but never eat good-tasting food again, I would do it. Anything (almost).
I want to be grateful: that my disease isn’t deadly like cancer; that my wealth and country can provide for me. I’m moved by the faces of suffering children.
If I could take a pill that would make me healthy for good, but prevent me from having kids, I would take it. I think.
I closed the lid tight.