Love and sorrow

Today marks one month from a day that was far too unexpectedly eventful, when a number of things changed in very big ways and pretty much none of them for the better. And the worst of them was, Naani died.

I don’t have a childhood, teenagehood, adulthood full of memories with her, because she lived in India, and I live here. But I still have a wealth of memories from the short spurts of time I did get to spend with her, and her larger-than-life personality helped fill the gaps left by time and distance.

She had a unique way of talking, a blend of proper language and slang that was inimitable, though Mama does a decent impression every now and then. Whenever I would hear Naani say something unintentionally hilarious, or drop a pearl of colorful wisdom, or when Mama would quote her dropping said pearl, I would think to myself, ‘I really should write these down, or record them or something, before they are lost forever.’ I never did get around to it, but in retrospect, it makes those memories and moments so much more precious.

My earliest memories of her are colored by the vagueries of childhood. We would collude in my mischief, in sneaking me treats and TV time. We would tease Mama together. Naani would help me win Hide and Seek, or protect me from Kanu’s wrath after my merciless pestering (while gently scolding me along the way). Whenever I was in India, she became my Mama Bear, and heavens help you if you messed with her grandkids.

I learned to love our conversations – by phone when I was home, or over chai and kachodi when I was in Kirti Nagar. Naani was a spiritual person, unphased by almost any trouble life threw her way. She came into her self-assuredness through preachings, and passed those along to us as we grew old enough to digest them. She emanated the same serenity otherwise only found at the temple.  

Naani was always thinking of us, her grandkids across the ocean. She had the most exquisite taste in fabrics, and would get beautiful suits made for us whenever we visited. She would make sure I got to eat all my favorite foods whenever I was home with her. She was selfless with her time and her spirit. She had such a big heart…but she really hated hugs. I made sure to give her extra ones whenever I was there.

I’m going to miss her voice, with its rough gravity. I’m going to miss bantering with her, and teasing Mama with her. I’m going to miss her palpable presence in their flat, filling every single room. I’m going to miss her playfully swatting me away when I would try to hug her. I’m going to miss curling up on her bed next to her, with my head in her lap and her hand on my head, grounding me in a way no one else could.

I’m going to miss Naani. Period.  

Lows and lows

"Nothing is permanent in this wicked world - not even our troubles."

- Charles Chaplin

It was my last Friday on the wards for this go-round, the last day our current two teams would spend together before all the non-interns switched over. And from noon onward, it turned into an emotional roller coaster I struggled to navigate.

Code Blue, ICU. Code Blue, ICU.

My attending and I were on our way down to the ER to see a new admission when a code was called in the ICU. The ICU staff is the rapid response team, so typically the floor doctors don't descend en masse; a few people headed over there while we two continued our trek downstairs.

Our admission was a very elderly lady with late-stage Alzheimer's who had fallen victim to a vicious infection and recently stopped eating. Her family had made her 'comfort measures only,' and she was being admitted for gentle care until hospice services could be put in place for her to receive care at home.

Spindly fingers. Raspy breaths. Vacant eyes.

Her room was crowded with family and her caretakers. Her presentation, from so many angles (minus the infection), bore strong echoes to my grandfather's last days. My attending spoke to the children as I held her hand, thinking back to when I last saw him, similarly cachectic and lost to the world in all ways except for the air his lungs still pulled in, the blood his heart still labored to pump.

After talking to the family and the ER doctor, we made our way back upstairs. Just as I was settling into my seat to work on her admission orders, a second code was called in the ICU for the same patient. They needed more hands on deck for CPR, and several of us rushed over.

1--2--3--4--5--6--7--8--9--10-- x 2 minutes

The patient's room was the one right next to the room where my patient's harrowing code had occurred one month ago, when I was working in the ICU. Half of the staff was the same that had been present that day. When I was struggling in the aftermath of the code last month, one of my medical school mentors told me, "Events like that tend to stay entrenched in your memory for the rest of your life. You'll always remember the details." It's only been a month, too soon to extrapolate to a lifetime, but I had flashbacks that Friday in a way I never had before. But there was no time to indulge (there rarely is); time to be present.

After some time, the family asked us to stop, and the code was called. Those of us who had come to help trudged back to the wards with a heavy heart, back to the grind of work. My resident had finished the admission orders for me, and I began the admission note. Soon after, my pager went off -- please call radiology.

Peritoneal carcinomatosis. Subcapsular splenic lesions. Periaortic lymph nodes.

They had CT scan results back for another one of my patients, a sweet, feisty elderly lady who had come in with intractable vomiting and unintentional weight loss. The results were grim. She had widespread metastases, likely related to a past cancer for which she had undergone treatment years ago.

I called her primary care doctor to give him the update. He came by the wards within the next hour, and we went to deliver the somber news to our patient. She took it in with her usual stoicism, giving little hint as to how she was feeling, and little room for us to explore that with her.

Olé!

What was left of the day went toward tying up loose ends and finishing paperwork. And was then followed by the final jarring event of the day -- a celebratory two-team dinner to feast to our time together, which had been scheduled since several days prior.

I wouldn't say I ran the full spectrum of emotions that day, because mostly I wallowed at one end of it, and had to play-act at the polar opposite end for the final few hours of an otherwise exhaustingly mournful day. There were too many echoes in speedy succession -- of my grandfather, of my ICU code, of my first medicine patient I had as a third-year medical student, who happened to be the first patient I had to break the news about cancer to, and the first patient I had transferred to the ICU, only to see him die a slow, sad death there.

Somehow that Chaplin quote seemed to belong with my memories of this particular Friday. When I was an MS-III with my first patient with newly diagnosed cancer, while simultaneously struggling to process my aunt's sudden and tragic death, my intern at the time would say, "This too shall pass." And more recently, as I struggled through that Friday, and some of the days leading up to it, another mentor/friend told me of her dance party with her adorable son to Taylor Swift's "Shake It Off."

How can we build in time to do that? I hadn't fully internalized what a wild, visceral ride I went on that day until over a week later. It was after I transitioned back to an 8a-5p schedule, had caught up on some sleep, and found myself with a two-day weekend to finally try and decompress.

There has to be a better structure for processing, even within the constraints placed upon us by training. How else will we stem that empathy degradation we keep hearing about?

Things to ponder. In the meantime, if you see me jamming to TSwift, all I will say is, don't knock it 'til you try it. 

One Year Later

So much can happen in one year.

One year ago,

I moved to a new city

Rohit, Varun and I started on the next big journeys of our lives

I had to relearn how to forge new friendships

Meghu started her last year of high school

Neha was about to get married

The world was a little bit less of a minefield. Or a little bit more. Sometimes, it’s hard to tell.

One year ago, September 11th was the last day I saw you.

One year ago, September 16th was the day you took your last breath.

Anniversaries are strange creatures. They force you to remember, and dredge up the oddest musings along the way.

Mama and Papa redid your room a couple of months after, and converted it to a mandir. I think it helped lift the stifling aura of grief that had engulfed the room for seven years, since Barimama left us from there, right where your bed was. It was a ‘circle of life’ moment, where my two doting grandparents, who had devoted their lives to caring for each other and their family, inhabited and vacated the same space.

Whenever I need a moment, some breathing room, I sit in your room, and I can see both your faces – okay, okay, I confess, that might be because your portraits are hanging on the wall. But you know what I mean. You usually have. It sounds corny, but…I feel like I’m enveloped by that same sense of security and comfort I used to get when I was five years old, running rampant around the house under your watchful eyes. I had missed that, for the past few years, and you helped me find it again when I wasn’t expecting to.

Meghu and I still cannot bring ourselves to use your bathroom. The whole room was your space, but the bathroom especially feels like an invasion of space. It feels wrong. You had your weakest moments there, which broke our hearts even as they wove us closer together. I used it once, for the first time this summer since you left, and I couldn’t go back in afterward.

I’ve been working on my letter to you for the past 24 hours, struggling with what I wanted to share, what I was feeling, how to articulate the thoughts that have been running rampant in my head for the past several days. Today, one of my very good friends pulled me out of my head and helped me re-energize. It was a variation on your question, you know? Beta, itna kyun sochthe ho?

I never got a chance to work through a lot of my feelings surrounding how you left us, those last couple of years. Everyone should get a mandatory vacation from life for a few days after having to bid someone adieu – we need that time to process what happened, and I don’t know if I ever properly did.

While you were alive, somehow there was always an irrational hope for a miracle, defying all common sense and scientific precedent. You were my grandfather. You survived a motorcycle accident. You swam from shore-to-shore of the Ganga. You could survive anything.

When Barimama left, I was there for all the days leading up to it, and I was there minutes after it happened. When you left, I wasn’t there for those last two weeks; I last saw you five days before it happened, and couldn’t make it home until 24 hours after. Until today, I don’t think I ever realized what a significant impact that left on me.

I felt guilty for the longest time, for not being there with you. And sometimes it still doesn’t feel real, until I go back home for the weekend and the house is dead silent.

At times I feel as if I never got a chance to process that you were gone and not coming back. You left right as I began on the path that I had told you I would follow when I was a six-year-old who refused to acknowledge that she couldn’t fix her grandmother. You would treat me to a gentle smile, maybe a little indulgent, but you never laughed off my childish insistence. And that persistent support pushed me forward, reminded me what I was working toward.

Today I can say, while I fervently wish you were here to share these moments with me in person, I know you and Barimama are both watching from somewhere – probably shaking your heads and laughing a little at my antics along the way. I know, I know, I have a ways to go. But you set me on the right track, and I intend to keep at it.

Your leaving brought with it a sense of vulnerability – in sense of self, in relationships, in my perceptions of strength and eternity. You were our center, I think. And now that you’re gone, the rest of us are still trying to find and hold onto a new one. 

मेरी हँसी तो मेरे ग़मों का लिबास है, लेकिन ज़माना कहाँ उतना ग़म्शनास है । 
जब मैं उदास था तो ज़माना था खुश, अब मैं खुश हूँ तो ज़माना उदास है ।।

Fatal flaw, redeemed

A week or so ago, I was telling a friend I had identified one of my social fatal flaws: the inability to tell a white lie. I call this a fatal flaw half in jest, half with gravity.

Since when is honesty bad? An overwhelming majority of our interactions with people are made up of white lies, to make ourselves, our friends and our family feel a little better, or less worse, about themselves or a situation, to soften a proverbial blow, to keep hope alive and postpone disappointment.

What does this have to do with anything? This is not a complete non sequitur.

Last Wednesday, I attended a Peds/Neuro co-sponsored talk on learning/developmental disabilities. The speakers were two mothers. The first was not a doctor, and her daughter was born with and/or developed: central brain damage, cerebral palsy, seizures, scoliosis, osteoporosis. The second was a neonatologist, and her son had regressive autism, meaning his development was normal until he hit two years old, when he stopped speaking and responding.

The mothers were amazingly strong, self-aware, and human, admitting their weaknesses, yet not letting those weaknesses rule their actions. They spoke about their kids, the difficulties they have faced in getting the support they need, the communication issues between the kids and their parents -- how their receptive language far exceeds their expressive language, making it difficult to interpret their needs. Theirs were heartbreaking stories -- yet they came asking for awareness and advocacy, not sympathy, as mothers protecting their children and the hundreds of thousands other children whose voices are not heard.

Someone asked the mothers a question toward the end, one that stuck with me, and probably everyone who heard their stories - when you see someone in a wheelchair at the grocery store, a person with cognitive disabilities standing ahead of you in line at the cashier, what do you do? I confess that my curiosity flares up; I want to ask questions, but it's inappropriate, so I hold my tongue. But because of that, I feel awkward - should I look? Will they see my questions mirrored on my face and resent it? Should I say hello? Is it welcome? Should I look away? Isn't it rude?

Someone asked, and the mothers said: Be honest, but remember that they are there, and acknowledge them. And then added, we have kids with special needs, and we still feel awkward. It doesn't go away.

It's human.

I remember my frustration whenever someone was over at our house, and would inevitably approach my grandfather and say, "Do you remember who I am?" Once. Twice. Then, "Remember me? I'm XYZ, your son's friend." To which my grandfather would reply, "Ohh, yes, yes, I remember you, XYZ." They took it at face value -- the more sentimental would turn and say, "See? He remembers!" and the more pragmatic would nod and carry on. Eventually, my grandfather learned to game the conversation before it really began. "Do you remember who I am?" "Of course, beta [son], how could I forget?" He used the ambiguous pronoun to his full advantage.

He may have been losing his memory, and many of his higher cognitive functions, but he was still sharp, which combined with frustration was a powerful weapon. He refused to be treated as the vocal equivalent of a mime. Eventually he lost his self-defense mechanisms -- given Alzheimer's progression, it was inevitable. But the visitors' questions persisted, even though it was clear as day he had little awareness of his surroundings. It was easy for me to defend him, and to some degree denigrate the questioners. Why torture an already tortured elderly man?

But last week, I was forced to face my confusion on interacting with people who have special needs. And I realized, when faced with my grandfather, those visitors were struck with the same uncertainties and an odd mixture of concern and curiosity. Wasn't this the least offensive way to express that they care?

Curiosity can be empowering, because curiosity begets knowledge, which boasts a certain heft, shape, specificity. My mother would claim I was cursed with too many questions. I would argue I was blessed with a billion feline lives. The confounding variable in these interactions wasn't curiosity, but fear - of judgment, of perception, of hoof-in-mouth disease.

I bore witness to my grandfather's regression for four years, and the frustrating interactions he put up with throughout. But now, I can finally try to pinpoint where we go wrong. Perhaps curiosity not completely unwelcome, but only when accompanied by honest empathy. Empty words are empty. False assurances are false. Glossy conversation tries to pull a curtain over reality.

It sounds very kindergarten, but we sometimes forget the Golden Rule and instead make a spectacle out of a "freak show." But regardless of the exterior, be it glamorous or thorny, inside is someone with feelings and a personality who struggles to express themselves, or sometimes lacks the consciousness to do so. Don't mistake that hurdle for a weakness.

To take a cue from Laurel, sheath any sense of "unquestioned entitlement," and recognize their sense of self is not comprised solely or entirely of their disability. Be curious, do your homework, but don't impose yourself on them.

Let them carry on with their lives, as you carry on with your own. And if the two happen to intersect, address them with dignity, and acknowledge their humanity with your own. Wield your honesty as a gentle tool of awareness instead of a harsh weapon of insensitivity.

Fear is paralyzing. Honesty is inspiring. Initiative is rewarding.

Humanity brings us to our knees.

What though the radiance which was once so bright

Be now for ever taken from my sight,

Though nothing can bring back the hour

Of splendour in the grass, of glory in the flower;

We will grieve not, rather find

Strength in what remains behind;

In the primal sympathy

Which having been must ever be;

In the soothing thoughts that spring

Out of human suffering;

In the faith that looks through death,

In years that bring the philosophic mind.

- William Wordsworth

Excerpt from "Intimations of Immortality from Recollections of Early Childhood"

 Aadaab

Initials: JCT

It seems fitting somehow that the first person whose story I tell is my grandfather. And in a way it’s my own story, too – his started long before me, but mine started with him. This journey I’m now embarking on, this started with him, too.

Barepapa loved to spin a good tale, some true, most humorous. Growing up, I knew him as a singer, a jokester, a caretaker, but first and foremost, a friend. He was my first playmate, and we were thick as thieves. Being a grandparent means being the designated keeper of illicit secrets – Mister Rogers TV marathons, extra trips to the park, a third helping of ice cream.

My memories of him make up a good portion of my childhood. Our ritual of walking to school started in kindergarten, when school was actually right down the street. I had PM classes – he would get me ready, feed me chicken noodle soup, and off we went. When I came home, I would take a nap with my head in his lap, on my favorite baby pillow. He and I had a game, where I would try to sneak up on him from behind, treading softly on my tip-toes. His hearing was so sharp, he never missed a beat, always turned around and swung me up before I even got close.

He loved to take us all to the park, pushing us on the swings and vainly trying to keep his little terrors in line. I remember he always dressed sharp. Every day, he had on his dress pants, a nice button-up shirt, and a belt, with his favorite sweater vest over top, rain or shine.

Barepapa dedicated much of his life here to raising us and looking after Barimama. She passed away my first year of high school, and Barepapa took it the hardest. He suffered a string of health setbacks, and very slowly began losing his recent memories. He had begun down the path with Alzheimer’s, and it was a roller coaster from there – frustrating for him to ride, and heartbreaking for us to see. One of my saddest days was when I successfully snuck up on him, and he didn’t hear me, didn’t see me, didn’t turn around.

In his spare time, before his eyesight and motor control began to deteriorate, Barepapa had filled journal upon journal with his poetry, shairo shairee. Any time we got together for prayers, he sang his favorite bhajan, “Aye Mere Gurudev Karuna,” and as he lost his memory, that refrain increasingly echoed through our home, a lament and a prayer.

I started college close to when he began losing his memory. Every time I left for school after a weekend home, he would slip some pocket money into my hand, tell me to study hard and come back soon because the house was too quiet with me gone.  

Soon after, his memory took a steeper decline. He steadily lost his sense of self, his awareness of everyone else. I came home one weekend, sat down to tell him a story I’d heard; he sat there listening, and as I looked at him, I realized there wasn’t the faintest glimmer of recognition in his eyes. He didn’t remember who I was; that knowledge never came back, and I knew I’d lost him, thought it could never hurt more than it did then.

This past year he couldn’t take care of himself anymore. Barepapa, once such a proud, self-made, independent man, was suddenly dependent on everyone around him. The fact that he wasn’t aware of the autonomy he’d lost made it that much harder to watch, to help him.

And these past two weeks were a different kind of torture. He stopped eating two weeks ago, and I was at school, away from home, away from family, away from him, confused about how to deal with this on my own. I came home the weekend before my exam because Mama wasn’t sure he would make it to Monday afternoon when I got done, and I’m so glad I got a chance to see him, to talk to him, even if he couldn’t respond. My leaving didn’t make the house quiet; his leaving did.

When he passed away Thursday morning, I somehow felt I hadn’t just lost my grandfather, my oldest and dearest friend, but also lost my last connection to my grandmother. They both made me who I am, were my inspiration, my driving force my entire life, and I didn’t know how to handle the thought of losing both of them, what felt like a second time.

And then one of my closest friends in high school, whose grandfather passed away a year after Barimama, wrote me a beautiful e-mail. She said, “One of the only things that made me smile when my grandfather died was something you wrote me in a card that I’ve always kept. You asked me to imagine our grandparents sitting in heaven somewhere having tea together, happy and free of all their earthly burdens.” She re-gifted me a precious image, of Barepapa and Barimama meeting again, sitting on a bench somewhere, spending eternity together sipping chai and gossiping about the rest of us.

Throughout high school and college, he would write me little notes, and I always kept one with me in my wallet, reading it when I was thinking of him. The latest one was a quote he transcribed for me:

“Everything will straighten itself in time
Only we need patience, faith, self-surrender,
The Lord is great
HE knows best the purity of every thought, action, and motive.”
-Swami Chinmayananda

And he also wrote something it seems especially for us today:
“We should never be afraid of tears. They soften our hearts, wash our eyes, and clear our vision.”