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Lymphoma and Pets
I got used to children staring, gawking and pointing and to their parents awkwardly fumbling with how to handle the situation. Kids seemed to be the only ones who notice their surroundings. Most others either didn’t even notice me or went out of their way to avoid looking at me for fear that I would vex them or because it made them way too uncomfortable. This was the best part about recovering in Manhattan. There is so much stimulation that my little freak show was just a drop in the melting pot. Had I had to walk around like that in my rural Connecticut town where the most exciting things we see are bears knocking over garbage cans and the annual fire truck parade I imagine my experience would have been different.
Most of the time I just blended in with the crowd. I wasn’t much to look at when compared to the man who dressed in a suit made of old newspapers or the lady walking around with a pet rat on her shoulder doling out flyers touting her savior or the group of teenagers in barely-covering cut-off shorts, inside pockets peeking out paired with tube tops just thick enough to cover their breasts and nothing else.
Washington Square ParkAs much as I was afraid of people and looked at them as walking disease carriers, I also wanted to be around people, desperately missing that human interaction. I was alone in a very small room for a month, unable to leave, unable to interact with anyone but the medical professionals, cleaning people and the few family and friends that dared enter my isolation, having to wear their own set of mask and gloves in reverse precaution.
It’s hard to find a place in Manhattan where there aren’t hundreds of others seeking the same grassy knoll as you, people walking on your heels, bouncing off of your elbows and breathing down your neck. My release into the real world was a harsh transition. It’s hard to imagine a more extreme dichotomy than hospital isolation and midtown Manhattan.
Though most often I remained anonymous and attracted no more than stares, there were those few encounters when people couldn’t help but take notice and approach me. I can’t blame them, and though it was exhausting to tell my story and these people encroaching on my personal space sometimes shocked me, I believe their questioning came from a place of concern for my well being rather than sheer nosiness.
She Got It
It was very hot and humid outside. The paper mask across my nose and mouth felt especially constricting in the oppressive air. I sat on a hard bench in Central Park just outside the wildlife sanctuary area, not far from the busyness of 5th Ave near the Apple Store and FAO Schwartz madness. Though it was ill-advised to be in crowds I craved the sanctuary of the park’s trees and hedged my bets to be able to be outside each and every day.
I was uncomfortable everywhere. I was so thin that my bones protruded from my bottom. With no cushioning, the unforgiving wood of park benches made it difficult to sit and rest and forced me to carry a sweater to roll under my sacrum or sit with legs folded underneath me in protection.
Bryant ParkAs the hours got closer to lunchtime the park filled with more and more people walking past my bench. Though I sat to the far side, close to the garbage can, no one dared sit next to me on my bench for fear of what disease this masked woman with the latex blue gloves could be carrying.
Under the veil of my rimmed cap, dark sunglasses and mask that covered two-thirds of my face, I watched people in their business suits licking ice cream cones on a break from the office. I watched tourists with large-lensed Nokia cameras snap shots of the bridge made famous in so many movies. I watched mothers and nannies give their children chips and hot dog rolls to throw into the pond and feed the ducks right beside the sign that said: “Don’t feed the wildlife.” I listened to roaming musicians as they set out their instrument cases for money collection and blew on their saxophone or banged their bongo drums.
Most did not notice me at all, blissfully unaware of the newly reborn woman struggling to stay upright in the heat and longing to be as svelte and fast as them, longing to have the occupied expressions they wore on their faces – fingers flying across their Blackberry keyboards or neon Nikes tied up for a run. They had a purpose, a mission, a job, a task. I, on the other hand, was merely doing my best to get through the day using the minimal energy I had for a few hours in the sunshine of a park under the cover of shade, slathers of sunscreen with nothing but my eyes to reveal my emotions to the outside world. Zombie-esque.
I couldn’t show my smile to these people. The mask prevented me from being able to prove I was friendly. I couldn’t engage. I felt alone, ugly, scared, jealous and defeated.
A woman and her husband came around the bend of the park path. She looked to be in her late 50s, relatively athletic, walking with ease and confidence with seemingly nowhere to be but a sure direction nonetheless. She and her husband, a peppered gray-haired man were holding hands as they strolled at a leisurely pace approaching my bench.
Rather than quickly looking away when she saw me — as most everyone else would do — this woman locked eyes with me. She then raised her hand toward me and gave me a thumbs-up. There were no words exchanged, just this universal sign of encouragement. It was obvious she knew exactly why I was wearing that mask and all that it symbolized.
Her opposite hand became outstretched as he gently pulled her back to his pace, oblivious to the interaction that had just happened as she smiled and turned back away from me continuing to admire the pond and the birds and the nature path they walked on ahead.
I was on the corner waiting for a cab. I felt I was always on the corner waiting for a cab. Germ-infested public transportation was not an option for me. I had walked as far uptown as I could stripping down from sweater to long sleeve amid the sundress wearing ladies around me. My body could not regulate its own temperature and without hair and fat I was chilled on the inside, sweaty on the outside most all the time.
It was another very hot and sticky day making it especially hard to breathe behind my constricting facemask and especially hard to stand the feel of sweat building up between the blue latex of my protective gloves and the shriveled prunes that were my fingertips. I wanted to rip and strip them all off – but I couldn’t. They were protecting me from airborne viruses and surface bacteria. They were protecting me from inhaling toxins, cigarette smoke, fumes, construction dust, and allergens.
Taxi cab backseat holding requisite just-in-case barf bagWithout their protection I could inhale a mold spore or pick up the flu virus off a door handle and without the immune system to combat either, they would surely send me to my demise. This was all hard to avoid while living in one of the most densely trafficked sections of one of the highest populated cities in the world: midtown Manhattan, a stone’s through from Penn Station and the Empire State Building and Macy’s – the largest department store in the world. Walking to and from anywhere from my Hope Lodge home was as if entering a bee swarm.
My friend, Lisa, was with me that day and she was the one sticking her arm out trying to hail a cab to take us the rest of the way to the Sloan-Kettering clinic for my appointment. I hovered to the side under the shade of a bodega awning so as to not scare off the cab drivers and to get a much-needed break from the oppressive sun, which was adding to the wooziness I already felt from low blood counts and high medication doses.
The store owner burst out of the door and ran over to me as if he – or maybe I, unknowingly – was on fire. He was tall and olive skinned wearing a white apron striped with meat blood and sauce stains. His eyes and hair were dark, wild and untamed.
“What happened to you?” He nearly shouted at me in aggressive concern. “What happened to you that you have to wear that mask?”
I jumped back startled by his forwardness. He looked at me with an expression of deep worry and sadness. His eyes softened and were welled with tears of empathy as he saw how young and fragile I was and his curiosity about my condition couldn’t be sated.
I explained that I was a cancer patient, that I had undergone a procedure to replace my entire immune system, that my body couldn’t fight infections so the mask had to be worn to protect myself.
I don’t know that my answer satisfied him. He was very angry and he wanted me out of the mask. He did not want to think of me suffering.
“Are you okay? But why … ?” He implored further.
I had to cut him off as I heard Lisa call to me and saw a yellow taxi pulled over for us. I walked away from him as he mumbled generic phrases like “May God be with you” and “I will pray for you.”
My hidden facial features perfectly expressed my numbness.
Lisa asked what the ordeal was all about. I just shrugged and sank into the cool leather of the air-conditioned cab, careful to avoid the sticky remnants on the armrest from the last rider’s iced coffee spill.
An Unexpected Walking Partner
It was a warm, summer evening. The rush of commuters had subsided and the sidewalks were again passable. I needed to be alone and begged and pleaded with Craig that I was stable enough to do so. After much argument and promises that I wouldn’t collapse, he finally decided to let me go for a walk on my own.
44-foot tall "Echo" sculpture by Spanish artist Jaume Plensa in Madison Square ParkI headed down 7th Avenue toward the Flatiron District with no particular destination in mind except to move away from the shopping crowds of mid-town and Times Square. I enjoyed cutting down to Madison Avenue where the sidewalks were wider and tree-lined and I loved the days when I had enough strength to make it to Madison Square Park to marvel at the tranquil piece of public art at its center.
But tonight was one of my first outings alone with no one there to hold my arm if I got weak, so I decided to cut it short and began to take the turn to cut back to 6th and head “home.”
Suddenly I felt someone creeping up at my heels. I gripped my sling back backpack tighter and picked up the pace a bit, assured that my cell phone rested in my front pocket but realizing my vulnerability as an obvious weak target for an aggressor. I hadn’t considered that at all. I was never scared walking the streets of New York.
I felt his breathing then a few steps later he was at my side.
“I used to be like you,” he said to me as he got into my space.
I turned to my left and found a man in his forties with some facial stubble and a tan. He was wearing Merrell sandals and a button up short sleeve with khaki cargo shorts. He seemed harmless. A heavy New York accent told me he was a native.
“Where’d you get treated? At Sloan? Me too. I remember having to wear those same damn mask and gloves,” he told me.
We synced into step and once I got my bearings and understood that this was not a rapist or a pickpocket but instead a fellow transplant cam padre I let my guard down and was relieved at the circumstance and overjoyed to be able to walk and talk with someone who’d been where I was now.
He looked so well and healthy and strong. He was more than 10 years out from his transplant and assured me that I’d get there, too.
Home baseWe walked together for several blocks as the sun set behind the skyscrapers and gave the sky a purple haze. He told me about his inpatient experiences, and we compared horror stories about symptoms and frustrations. He shared with me what it’s like to be on the other side. We were instant companions sharing an unfathomable common experience.
He was heading uptown for his real home, while I had to turn back downtown toward Hope Lodge where I lived among the cancer patients. He put his hand on my shoulder in a sign of reassurance and encouragement. I thanked him for stopping me on the sidewalk and opening his life to me.
We parted ways and once I got back to Craig and the Lodge I crawled onto the bed flipping to my back and putting my legs up the wall to drain all of the swelling. My muscles were tired and my joints achy from the walk, but my heart was filled by the prospect this stranger instilled that one day this pain would be over and I would be on the other side, too.
I suppose I didn’t need to be alone that night. I needed to find a stranger who had also lived behind a mask and just happened to be walking the same route as me.