Keeping the Eye on the Butterfly

tulips

tulips for the cancer caregiver

If Billie Jean had been a nurse, she would have had Dr. Michael Jackson as her attending. Somewhere between the jangled nerves of being in the radiology department, my mother had forgotten the name of her surgeon. When asked, she quickly quipped, Dr. Michael Jackson. Her doctor whose surname was not Jackson left her in pre-op by moonwalking out of the room. God bless him.

When we visited her in the recovery room several hours later, through slurred words she asked, When can I eat? A corporal sigh could have been heard from Texas to Timbuktu. Four meals later, my hair tousled from hospital bedhead and my favored Art Institute of Chicago hoodie slung from air condition weary shoulders, I stepped outside the hospital for the first time. It was a brave new world. In it, we would learn if the disease had spread or if the doctor had cut it out completely. We would transfer from the hospital bed to the home bed. But first, I drove to Whole Foods to start my part.

Out came the hand-scrawled list of ingredients divided in my Type A template by store sections. My hands dove into the organic produce bins squeezing and sniffing, gathering fruits and vegetables in my wake. Mist caught me unawares and sprayed on my arm and shirt as if offering a soothing reprieve. On to the bulk section, my frayed nerves caught me getting mouthy with a rogue customer who dipped her hand into the bin, plucking a prune to consume without a thought about the available scoop.

I have renewed respect for the role of caregivers. They are the unsung heroes whose work goes on behind the scenes like the light technician on a Broadway show. In planning for this trip, I had no idea that I might have bitten off more than I could chew but then again I’ve always been a graduate of the fake-it-til-you-make-it academy. Do you belong to that esteemed institution too?

For over a week we chilled out to chia pudding and got saucy with nutrient-dense smoothies. We drove by fast food burger joints and she wistfully said burger with a reverence usually reserved for Vatican City. The lentil walnut loaf with handmade “approved by Annelies” ketchup served with cauliflower mashed potatoes got cheers all around. Being a cook and keeper of the kitchen wasn’t so hard- until my normally food-friendly mom started sliding food around her plate.

Tiger moms, helicopter moms and the like get such a bad rap. They know or at least I knew what was regular for my Mom and when it started going into unexpected territory, I fretted and fussed. I began writing really bad poetry- the cathartic kind that stumbles across the screen because it does not serve the role of chasing after a Pushcart but to help suspicions and worry eat their fill of black type marching on a blank page. I began growing desperate, knowing lack of appetite had been a signal early on from what the doctors and nurses had said could be a change of course.

Not on my watch became my mantra and yet she slept as one who had walked the length of the United States from coast to coast. Her energy waned and her appetite disappeared. I took a short house break to hit the elliptical like a freight truck trammeling downhill. I focused my anxiety into downward dogs. I prayed without ceasing. And still, my tunnel vision caught my breath.

We caught the infection early. Dr. Michael Jackson gave us a prescription to help us Beat It, telling us it would take 48 hours for her to perk up. For the narrow window from the surgeon’s office to the house, she was herself again, albeit abbreviated. For the first time since her diagnosis, I caved,

Shall we get you a burger? (voice trembling. expectant. hopeful. weary.)

Our wide car swung into the drive-through line and spoke our order to the small voicebox as if this one decision would turn our ship around in the right direction. She ripped into the burger with interest- five bites worth- which gave me a short-lived joy.

Even now, I stand ready to invoke calories into her body. I banish the infection from doing its dastardly work. I am helpless to do anything other than raise my hands to my heart and my words to our Creator. The words clink into one another like an abacus counting the days, hours, minutes and seconds when she will be asking for seconds, walking around, feisty and entertaining guests.

When you become an adult, you learn to worry. You become an accountant even if you narrowly avoided flunking high school math. Disease only increases the creasing of the eyebrows. Even after good news, the kind that makes you want to jump and click your heels, it’s as if you’ve cleared one hurdle. And, in life, you celebrate each hurdle cleared instead of anticipating the next hurdle.

So, if a fast food hamburger can appease her appetite as antibiotics address this pothole, I can be thankful. Thankfulness is the thing I’ve clutched as my security blanket when no one answers the phone after cycling through the quick list of close contacts. It is what flits high over this circumstance, a butterfly catching drafts of an unseen subtle wind, a disposition of the heart against the storm.

8 comments

  1. I’ve walked that road once and can only imagine how much harder it is with a family member…its good work your doing.

  2. I was amazed and in awe of the care you gave your mother….no one could have done better. Love you!!!

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