The Palms of My Hands

I’m in a hospital with my brother Jack. Just as I was at this time of year 8 years ago, though then with much more family, chaos, and confusion; today, it is just me and him. During the holidays of 2011, we were just starting this odyssey; a swift diagnosis of acute lymphoblastic leukemia, the chemo, the hospitals, the absolute free-fall into which my family and I tumbled. Now it is the holidays of 2019 and Jack has another milestone in his journey: his induction into the STAR (Survivors Taking Action and Responsibility) Program at the Lurie Children’s Hospital here in Chicago. He enters now into adult survivorship — something that will be part of his life forever. Jack’s cancer remains in remission, but years of chemotherapy take a serious toll on the human body. Once a year, for the rest of what I know will be a long and happy life, Jack will have to go in for a yearly work-up of his blood, heart, bones, etc. Do not pity him, for Jack never stops to feel bad for himself ever — not once, which is more than most of us can say. He is as wonderful and thriving as ever, on winter break now from his freshman year at Clemson.

I have hours to spend in this hospital today. How long it has been since I last was glued to a pleather, strangely-patterned hospital lounge chair. How different I am now from the girl who first walked through these doors. I did bring a book to read, but I keep putting it down, and I find myself on the notes app of my phone, writing. I’m thinking of the road I’ve traveled these past 8 years; the gravelly, pot-hole-filled, uphill road. I feel like crying and I feel like laughing. I think of the pamphlet some social worker handed me 8 years prior: When Your Sibling Has Cancer. I think of how alien the words on the pages appeared to me, how unknown and isolated I felt. I wanted someone to be real with me, to give it to me straight how all of this would unfold. If one day, some other version of a lost 17 year old me stumbles upon this and thinks: “Finally, a little uncensored truth, a small dose of what grittiness lies ahead, a peek at what the light at the end of that long, long, long damn tunnel can look like”, then some semblance of meaning will be found within these singular feelings I feel once again, here in this hospital.

I find myself in a battle of remembrance vs. erasure. I want to remember what we have survived, to be humbled by it, but I also want to erase these memories. How to reconcile this? I’m not sure there is an answer. The guilt — there it is, my old friend, who parked itself on my conciousness the day Jack was able to stop chemo. I should be volunteering for charities, I should be raising money for sick kids, I should have become a nurse. It’s my right to move on, I raised lots of money in the past, I did everything I could as a teenager, what else do I need to do? I should remember it all, I should take nothing for granted, I shouldn’t forget the rug can be pulled out from under me at any moment again. I owe nothing to no one, I did my time, I can move on right? Every now and then I see a GoFundMe on Facebook for a dying kid’s medical bills, the news features a heroic nurse going above and beyond for their patients, I come across a bottle of “Hero Spray! Courage Water for Kids with Cancer!” lodged in the back of our guest room bathroom’s closet while I was on the hunt for a spare toothbrush. It’s in these moments I feel most vulnerable, most scared that I’m not doing my part to balance out the karmic functions of the universe. In my more rational moments I realize that’s not how cancer works, yet guilt is a feeling that returned today, in the lounge of the hospital’s cancer floor as Jack and I waited for his name to be called. A young boy, bald and with a mouth mask on to protect him from germs, sits slumped in a chair with his two parents next to him, looking equally weary. All I can picture is a blinking neon sign over Jack and I’s heads that reads LUCKY, even though I know luck has both nothing to do with it, and everything to do with it, and really considering Jack’s circumstances, I’m not sure LUCKY is a category he absolutely falls under. But at this moment it’s what I feel. Lucky wrapped up in one big bundle of guilt. I want to say out loud, “I’m sorry, I’m sorry, I’m sorry.”

In her 1978 book-length essay, Illness as Metaphor, Susan Sontag wrote, “Nothing is more punitive than to give a disease a meaning — that meaning being invariably a moralistic one.” I’m inclined to agree. When I try to assign meaning to Jack’s cancer, I come up empty-handed every time. Did his illness make me more resilient, more likely to face future hardships with an iron spirit? Yes. Did his illness make me neurotic, more likely to stress myself out when I need not? Also yes. I can’t subscribe to any narrative that assigns honor onto the experience. What I know to be true is this: it transformed me in many ways, both good and bad.

Another thing I know to be true: “Someone I loved once gave me a box full of darkness. It took me years to understand that this, too, was a gift.” — The Uses of Sorrow by Mary Oliver.

Up until about two years ago, I would do this thing; I would look around whatever room in my house I happened to be in and assess it for signs of cancer’s presence in our lives. I was waiting for the day I’d find nothing and feel normal. Kitchen: jumbo bottle of hand sanitizer, hospital paperwork on counter, chemotherapy pill bottles in the silverware drawer. Bathroom: mouth wash specified for dry mouth, jars of cream to heal cracked and dry feet and hands, ginger tablets scattered on the counter for nausea. The car: a stray pink vomit tub; these were littered all over our house forever. Last June — that old habit crept back in one evening. I sat cross-legged on my bed, feeling relief course through my veins and then my eye caught on a Make-A-Wish pin on the cork board above my desk. I couldn’t bring myself to toss it in the trash; it rests now at the back of a drawer.

The psychological toll — for me — was damning. I operate now at a low-level constant paranoia of all the ways I could lose my loved ones. Sometime over the years after Jack’s diagnosis I became a hypochondriac. Oh yes, I’m one of those that thinks every headache is a looming tumor, every cough that lingers a little long, an augury for something menacing. I joke about these parts of myself constantly. I have to, otherwise I really would go crazy, but I understand now there are some levels of peace of mind I will never know again.

Laying in bed at night, or sometimes when the house was very still, when John was at work, my mom at the hospital with Jack, Will not yet off the bus from school, I would hold up the palms of my hands, look down at them, and sort of go a bit cross-eyed…I’d let my eyes relax until the lines running across them became blurred, until it looked like 15 fingers instead of 10. As my vision warped, I would have my private moments of grief. I was so angry with my reality that I would pretend this visual glitch was a real one — a glitch in reality. I had slipped into another universe, one where this cruelty was possible. It became so I couldn’t look at my hands; it scared me.

Today after 6 hours of appointments, Jack and I made our way to the exit elevators. As we waited and chatted, I looked up at him. He’s taller than me now. Healthy color sat on his cheeks. A full head of hair, as untamable and ever-growing as it was when he was a toddler, there on his head. I looked down at my hands, palms up, for what felt like the first time in so very long; there they were, as steady, as stable, as real as they could ever be.