The Veil (02.16.2019)

Are you doing ok in there?”, I asked trying to sound as normal as I could. However, my voice did not even sound normal even to me. I could detect that slight over-pitch when I was stressed or concerned or just plain worried.

It was almost 2.30 AM and I was hanging outside the restroom while my daughter was inside — For a while now. The UC diagnosis last year crept in while we least expected it. A simple colonoscopy and our lives were changed forever. It was just last week when Jenny had complained about being fatigued, tired, and even walking from one room to the other. As an Indian parent, we were taught to teach our kids the strength of perseverance and so I sent her off to school with words of motivation and a false sense of invincibility.

That night, sitting outside her ER room in Portsmouth Regional Hospital, I had played that scenario in my head over and over.

“You brought her just in time. She was probably a couple of hours away from organ failure”, the words from the ER head reverberated as I watched 5 different people go in and out of her room ignoring me.

“We will have to transfer her to Dartmouth Children’s hospital (CHAD). We don’t have the facilitates to treat her out here”. I resisted them for the longest time not understanding the gravity of the situation. Finally, at 2.00 AM with snow falling all over, I drove my car as fast as I could trying to keep up behind the racing ambulance heading north as it cast red, blue, and white shadows in the falling snow.

While we were living in Portsmouth, I craved a non-vegetarian meal every Friday night. My favorite was a recipe for Biryani that Ana made once a month. Also high on the list was Chinese fried rice: An Indianized version replete with hot chilies. I wasn’t concerned about calories or fat content. Only with flavor, texture, and satisfaction. I drank a small glass of cheap brandy reserved only for those Friday nights — Our versions of rare red wine usually reserved for special occasions and dipped my fork to find pieces of well-done crusty chicken between layers of flavored rice. Cleaned our plates. Ate dessert. But those were carefree days when our biggest worry was deciding when the exact dates to head to India in the summer.

Now here I was sitting in a chair that doubled as my bed. Hours after Jenny was transferred to CHAD she was stabilized and put on a heavy dose of Prednisone; a powerful immune system suppressor that was also used for cancer patients. A couple of bags of iron supplement infusion had brought her out of anemia for now and the color had returned to her cheeks. Even as a teenager she was well aware of her prognosis and engaged the amused doctors or the confused residents in long discussions about available treatments.

During my days in the hospital, I had begun to work on my phone as I sat next to her in bed. She had spent one week when she was ill under observation in the pediatric intensive care unit at CHAD with a concerned gastroenterologist hovering around her every two hours. The ward was filled with very sick kids, most of whom lived there. Two girls were awaiting heart transplants; the older one had been in the hospital for nearly a year. A nine-year-old boy lived along with his stuffed animals inside an isolation tent with tubes coming out of his stomach as his parents sat outside. The halls and doors of the floor were decorated with the children’s art projects: watercolors of rainbows, and stick-figure drawings of families. Some of the rooms were equipped with video monitors so that the children could communicate with their parents at home.

While Jenny dozed, I wandered the halls, talking with some of the kids and sometimes when I dared, even with their parents. I wandered outside the hospital in the February snow, my motions resembling a zombie — Animated, deliberate, yet devoid of any mental connection. I went to the local Walmart to get her a comb to brush her hair or get myself two of those dollar-menu chicken sandwiches from Burger King. I brushed her hair twice a day as she taught me to braid her hair and as a proud father, I even showed it off to a couple of nurses who were amused — A spec of brightness in their usual dreary days.

As we had left the hospital driving back from Dartmouth after a six-day sojourn, the car had found its way among those mountains heading back south, as the darkness around was brightened by an occasional truck passing by, it suddenly hit me — All of it, just simultaneously. My vision blurred while my hands held the steering wheel tighter until my knuckles turned white. I finally released my right hand and patted her head. She tilted her head slightly towards me watching my face for a bit, silent as the car raced back home.

“Transparency clause?”, she said before I could even understand what it meant. As an Indian parent to a fiercely independent girl, we always had a more adversarial relationship — My advice and life lessons met with piercing questions and logic. But the last week changed us both. That authority, anger, and adversity were all gone. It had melted, vaporized, and instead filled with a veil of dread.

“Yes”, I said as I held her hand tightly. We would always be open and talk about things — Anything. No topic was taboo anymore. Over the months, I would get an insight into a brilliant and sensitive girl as we would talk about anything and everything — Poop, mensuration cycles, relationships, bachelorette endings, and the agony of living with a chronic disease for life.

But during the months that followed, I often found myself thinking about those children. Eventually — after Jenny was well again and was traveling to India during the summer — I called the hospital social worker with whom I built a good rapport and got an invitation to visit the children and their parents over the weekends to help out as a volunteer. I started spending all my weekends at the hospital without telling my family about it. I wore a special volunteer identification tag — though everyone on the unit knew I was a parent of a sick kid once here — and made my way in and out of the children’s rooms. I sat in on their tutoring sessions and hovered in their doorways as the doctors made their rounds.

The two heart transplant girls had become close. The twelve-year-old took me aside one day. Her long dark hair streamed in waves down the back of her pink bathrobe. I tried to braid her hair but failed miserably. She just laughed.

“It’s hard to live here in the hospital, but you know what?…. It would feel so good to just take a walk outside in this summer heat” she said looking out of the window wistfully.

There on the floor was the invisible veil that separated the healthy from the sick. It was impossible to be in that hospital ward full of children and push thoughts of Jenny from my mind. I remembered the way that very same veil had settled over us, like the sheerest netting, just some months earlier. On the ride home from Portsmouth circle, I always felt a bit uncomfortable as I neared the lane that goes to the Portsmouth hospital, the large “H” by the side of the road that meant nothing to us before, now made my heart go to stone. We would make so many visits over the years. The cars surrounding us were filled with lucky people going about their daily business. They were thinking about what movies to watch tonight, their shopping list, or an annoying thing their spouse said last night. They had no idea how good they had it.

And we — we had crossed over to a place where only one thing mattered. My entire perspective, the way I reacted with the world, had been changed in an instant that night as I drove behind the ambulance flashing its red, white, and blue lights in the snow. I now saw Jenny in the face of every child on that floor. I saw Ana and myself inside the stooped shoulders of each parent pacing the halls. We had such a close brush with devastation. We had been hung by our feet over an abyss — and then pulled back. Our veil had lifted for now — but I knew the hidden fact, that the veil hovers, always. It can descend on anyone, at any time. The way — if it is a way out — is to know this, but not let it stop you.

The nurses at CHAD were some of the most exhausted nurses I had ever seen. Their patients didn’t just come and go, as they would in any other intensive care unit. They came and stayed, these children, with their malformed livers and kidneys and hearts. They stayed and — through the daily act of care, the cleaning and disinfecting and flushing of bedpans and stents and intravenous lines — the nurses came to love them. Those nurses knew the odds: More than half of those children wouldn’t make it. The clock was always ticking. Donor organs wouldn’t arrive in time. A code blue could be paged in anytime. But still — knowing what they knew — they didn’t hold back. They opened themselves up to the possibility that their hearts would be broken again and again.

One morning, a few weeks into the volunteering, I took the two-hour journey as I did every Saturday morning that summer. I walked up to the CHAD lobby. The guard knew me by now and waved me through. But I couldn’t get into the elevator to the fourth floor, couldn’t press the button. I sat on the small sofa by the side and waited. I felt like I might come apart — my legs refusing to move. I waited in the lobby for a while — that same lobby that I had walked through heading to the receptionist as I asked which floor Jenny had been taken to. I was hoping it was temporary, but the feeling didn’t pass. I turned around sat back in the car and drove, the entire two hours were just a minor blur in my head except for the memory of rolling down the window to throw away the hospital badge around exit 32.

I called the social worker and told her that I couldn’t come in because I was sick — I just couldn’t do it but was too embarrassed to say it either. These were families who had it so much worse than we ever did, even in our darkest hour. But I had no professional distance. Even with my volunteer badge on, coming in from the outside, I wasn’t an outsider. I couldn’t simply come and go. Each time I left the floor and re-entered the land of the lucky, my inner voice asked me: Why them and not us? Why such terrible tragedies? Why is it that children should suffer? What had they done wrong?

Months later, I texted one of the nurses on the floor to ask about the heart transplant girls. The twelve-year-old had received a heart and died during surgery. The ten-year-old, alone in the hospital without her friend, was still waiting.

And so, I continued to clean and so I cooked. I bought industrial cleaners in bright cheery colors from the dollar store: Lemon flavored detergent, orange cleaning liquid, and soft cleaning pads. They stacked up in the kitchen under the sink, some in my restroom drawer. Every time I was worried, I silently vacuumed, washed, scrubbed, and cleaned everything around the house as if that act would make a difference. Organizing things around me gave me a momentary illusion of control.

I cooked pots of rice and daal. Ana and I gained ten pounds between us. The wafting scent of daal traveled around the apartment bringing Jenny out of her room.

“Group Hug!!!”, she called out and we all assembled in the middle of the apartment hugging each other — Me, Ana, Becky my younger one, and then there was Jenny, our glue. The four of us held each other in a tight circle — In an embrace that felt beyond proportions.

All the while, far above the Portsmouth apartment, that veil floated in the sky.

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Life is represented by two distinct sets of people: The people who live it and the people who observe them. These are their stories.