Cutting Out

October 23, 2006 at 11:24 am (Uncategorized)

Trying to capture life in chronic town – my conception of daily life with a chronic illness —can get to be a drag, particularly on those days when I don’t want to think about sickness. Hence my recent silence.

I’ve always maintained that one of the best strategies for managing a chronic illness is to live in denial of it. Sometimes this works well; other times, it leads to things like broken feet. As Paul pointed out in a comment to my last entry, “forgetting” about having a chronic illness and prednisone-thinned bones and hiking for several miles up a mountain can do wonders for one’s mental state, but may have a less positive outcome for the small (and apparently fragile) bones on the bottom of the foot.

Even though the podiatrist made me promise I would forgo stomping around on my foot for a while, and even though I have spent much of the past couple of weeks having various body parts scanned to explain anomalous liver tests, I was still able to forget about being sick and broken this weekend. My secret for illness amnesia is a three-foot tall, golden-haired boy with a penchant for utter busy-ness. My son Andrew, who will turn three on New Year’s Eve, has no interest in illness (unless the snot pouring out of his own nose prevents him from scampering around the park). I owe him my sanity.

To be truthful, I don’t think I would be able to cope with having chronic multi-systemic sarcoidosis if I didn’t have Andrew. I wonder how people without children or with grown children deal with the psychological effects of the disease. I’ve come to realize that without Andrew’s demands, I would spend much more of my life brooding about being sick. Ironically, it is in taking so much from me – both physically and psychologically – that he gives me the opportunity to be more fully alive.

Take this weekend. I am waiting on the results two different sets of liver tests and a mammogram. But it wasn’t until I had a spare moment to myself this morning that I even remembered that I had to follow up with my doctor or that the results were overdue. This is because Andrew kept me occupied with much more important things. We had to have a tea party with “real blueberry tea” (blue food coloring in water). Of course, he insisted on being in charge of pouring the water into the china tea cups. This involved flooding the table and the floor with vivid blue water at least ten times before I convinced him to turn his attention to the tea snacks I brought downstairs. We also had to read the latest Mister Putter and Tabby books we checked out from the library about seventeen times in a row. We had to build enormous construction sites with his impressive toy truck collection. We also had to make Andrew’s signature multi-media collages, which involve gluing string and shapes cut out of felt to paper, and then drenching the paper with insane quantities of glitter glue, paint, and water. We put in several hours of work on the ten dollar Thomas the Tank Engine sticker book. (Pricey, but it does contain over 700 Thomas and friends stickers!)

And then we had to make cookies. Halloween is fast approaching. My Mom has already made the costume of his choice, sewing him a bunny suit (complete with giant floppy ears, broomstick whiskers, and a cotton tail) out of the densest fur imaginable. We’ve read Halloween books, decorated the house, and gone over the intricacies of the trick or treating. All we had remaining was carving the jack-o-lanterns and making cut-out cookies. After Andrew pestered me for a few days, I finally relented and broke out the cookie cutters shaped like pumpkins, witches, bats, and black cats. We made a buttery dough, and Andrew rolled it out using his very own rolling pin from a special Auntie. We managed to make a few cookies, in between throwing flour on every surface in my kitchen and Andrew stuffing epic quantities of dough in his mouth. Then it was time to decorate. We made orange and black frosting, which Andrew spread on every exposed object, especially his face and arms, before turning to the much more important work of applying the sprinkles. The sprinkles adhered the frosting so well that I had to throw him in the tub as soon as we were done. All told, we produced about eight cookies, all of which Andrew agitated to eat immediately. It took me about an hour to clean the kitchen, another hour to bathe and dress my boy, and an entire day to allow the sugar coursing through his veins to metablozie and cease agitating him to almost electron-smashing velocity. And it was fun. Much more fun than lying around brooding about my ridiculous liver (that some of you seem to doubt actually exists anyway).

I know that Andrew is becoming aware that I don’t feel well sometimes. I think he is beginning to sense that his mother spends more time at doctors’ appointments than is normal. He has already learned to be solicitous of my injuries and illness. This weekend, for instance, he asked me over and over how my foot was. Jay and I have made a pact not to discuss my illness or my constant medical appointments around him, unless we are explaining in a factual way that Mommy needs to be gone for a couple of hours to see a doctor.

Perhaps it is wrong to depend on my son to be the antidote to the toxic brew of illness and treatment I consume. I know I can’t count on Andrew exhausting me as much as he does now. I know he won’t need me as much as he does now for much longer. All too soon, he will spend his weekends on the soccer field or with friends or sulking in his room behind bad science fiction novels. I know this. Which only makes the cookies we make together now all the sweeter.

1 Comment

  1. Will Choy said,

    Regarding the looming birth of our daughter (due date Jan 9, 2007), a colleague advised: “When you’re awake at 3 in the morning changing diapers or feeding… enjoy it because it goes way too fast.”

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