The 2023 wormhole

& the helpfulness of writing

A writer either doesn’t write because she has nothing to write about, or too much to write about. For me, it has been the latter.

Rather than the proverbial writer’s block, it has been a dam. There is so much behind it that I worry it’s too much to open up. I catch up with friends and I wonder halfway through the monologue I have stumbled into if I have even paused to take a breath, or given them space to say something back. I have not, most likely. It is then that I know I should be writing.

One year ago we rang in the new year with our neighbors, a kids’ New Year’s Eve party at 5pm on Dec 31st. I made resolutions the next day. I remember none of them now.

What I remember of the year is big things that happened, things that have changed the rest of my family’s life. I keep returning to writing, how writing reveals truth, because the pictures on instagram and facebook show only a certain dimension of that. I post photos of images and experiences and funny things I want to remember and little of the things I wish never happened. The chasm between online life and real life grows.

Looking back to Dec 31, 2022 from where we are now, we must have passed through a wormhole.

In early 2023 my husband and I learned that our son has autism. Our son has since lost verbal language skills. I have thought for a while if it is something I should write about publicly. He is not defined by either of these traits. To me, he is defined by his smile, his persistence, his love of music. It is an early lesson, to have a child with special needs, and wonder how the world will define him, and not be able to control that. And yet. Sharing his autism has introduced me to the people who can support him, who can understand and help us how to better understand him. And one of the most gratifying things has been connection with other caregivers or siblings of children with autism. I’ve connected with many people through facebook and neighborhood groups, but only spoken with a few family and friends who have family experiences with autism. And I’d like that to change, because even those few conversations have been so meaningful. So if you’re reading this and thinking of reaching out, please do. It’s helpful to think that the people you already know can help you connect the past with the present, when you feel that things are changing fast.

While we processed that news, halfway through 2023 a discerning pulmonologist picked up a diastolic heart murmur on my husband Nihit. Even doctors are not above denial, and at first, I refused to believe it. I refused to auscultate myself to confirm, as if the mere touch of my stethoscope on his skin would will it into existence. The echocardiogram confirmed what I had prayed against, and then some: he had severe regurgitation of mitral, aortic, and triscuspid valves of the heart. He needed 2 and maybe 3 valves replaced. Still, at the cardiologist visit, I was in denial. “Can it be done through interventional cardiology?” I asked. I could not stomach the thought of Nihit going through open heart surgery in his 30s. I, who as a medical student on my two-week cardiothoracic surgery rotation had held a patient’s heart in my gloved hand during a mitral valve repair. I had seen them set up the heart lung machine for the operation. I had been in the OR as the surgeon who would become my husband’s surgeon commanded an hours-long surgery. I had joined a cardiothoracic surgery resident in closing the patient’s chest, after the sternum had been sawed open for surgery—watched them wrap pieces of wire around the two halves of the sternum and pull them together. On chest x-ray, you can see the wires shine bright. The linear incision becomes a scar down the chest that patients joke is their zipper.

It was isolating to have these memories, to wake up in the middle of the night in a sweat thinking, this would be my husband. I could not tell him. “I’m sure she’s explained the anatomy to you,” one of his doctors said. I had most certainly not. I could not bring myself to explain what was going to happen, as if it was going to be easy, or definite. My words, if they unleashed, might be too strong, too specific. Better to keep them behind the dam. Defang them.

It didn’t matter. It happened anyway. Sternum cut through, heart stopped, 2 mechanical valves sewn in, 1 biologic valve made from a pig, heart restarted. It happened to my husband, not to me, so even me writing about it feels silly. But I know I am proud of him. He survived a 4-6 hour surgery; then, tough, painful days in the ICU and cardiac unit. Days when we relied on the kindness of his nurses and MAs, who grew to recognize and know us on the unit after he had been there for 10 days his first hospitalization, then 7 days the next. We have so many people to thank. His surgeon Michael Acker, his cardiologist, his rheumatology team, his pulmonologist, the amazing team of NPs, his nurses, his medical assistants, the doctor who drained 800ml from his right lung space on a Saturday morning. Dr. Acker for doing the surgery, then coming out to update us in the waiting room and kneeling to the ground to pick up each individual airpod that had fallen and rolled when I got up too quickly in my frazzled state. The nurse who helped me push for Nihit’s extubation when I saw him communicate with his eyes that he needed the breathing tube out. The nurse who got him a decaf starbucks coffee every time she went there before her shift. The MA who was really good at finding him the most optimal position in the hospital bed. The staff who let the kids visit even though initially, policy was no visitors under 12. The Hospital of the University of Pennsylvania for building a serene spa-like new hospital “pavilion” so that Nihit had a private room, incredible river view, and startup-style remote-controlled frosted glass windows. It didn’t make things less painful for him, but maybe more tolerable.

Obviously would like to thank coffee, for existing.

And family, colleagues and friends. Staying with us. Checking in. Visiting, sending meals, gift cards. Time off work for both of us, colleagues covering our patients and projects. Greeting cards like the one from some of my colleagues: “This too shall pass,” with a poop emoji on it. Close family getting us through all the moments: shock, tears, anger. The doctor friends—fielding late night texts, questions, rhythm strips. Spending time on the phone with me, validating how big a deal this was. A friend on Facebook who I hadn’t connected with in years who had just had a similar surgery and took an hour to answer all our questions about his experience. The online groups I joined filled with patients who had been through the surgery and shared their practical experience, and emotions. A community we never imagined joining.

Even writing all of this out in a stream of consciousness, it feels like a dream, it feels like not enough. It will never be enough; there will never be enough words to articulate the sense of before and after; to tell you that even though Nihit’s scar is healing perfectly, and hair has grown over it, and his chest tubes came out and he hasn’t had to get a pacemaker, and the audible ticking of his mechanical valves is comforting, not annoying…none of it would convey it all.

There were funny things, too. For 6 weeks, Nihit wasn’t allowed to drive a car or pick up more than 5 lbs of weight. I, who loathes driving, became the primary driver, along with my father-in-law. Of course the universe would conspire to make me parallel park! I put myself through a personal parallel parking bootcamp in the weeks leading up to the surgery. I alerted my neighbors that if they saw a Prius spending 12 minutes in and out of a tight spot on our narrow block, that they should under no circumstances be alarmed. And while I’m not the best South Philly parallel parker, well, I can do it.

And now with his shirt and jacket covering his scar Nihit walks and drives and picks up the kids and to others it seems like everything is the same but it’s not, and he’s on warfarin (a bloodthinner) for the rest of his life so his valves don’t grow blood clots, and every time he sleeps in a bit too long I worry, and then he wakes, and everything is fine. And that’s the secret shared trauma we both have of 2023, is that things changed drastically and yet we move on to 2024 and it looks like they’re the same.

But the thing that I know gave us the strength for 2023, and that hasn’t changed, is the smiles on our kids’ faces, their optimism and love. My daughter telling me she missed me when I come home from work. My son’s smiles during our bedtime snuggles. Pure joy. They were the reset button for us at the end of each day, the thing that mattered most.

And writing, too gives me strength. When I finally chose to write about these things that were hard, I realized that I needed to write to process. And sharing, though tough, feels important as well. Because I know that my photos and the things I might cherry pick to remember from this year will mostly be the happy ones. And there were so many happy moments; family trips and hangouts and hugs, family moving close to us, good books I read, fun zoom calls, writers’ groups, trips, date nights, dancing with the kids. Starting to run again, finding renewed gratitude for physical health. Finding meaning in work, helping patients and their families through the ups and downs of their lives. Listening to them. Some of my patients have been through open heart surgery before the age of 1. I tried to remember them, all the strength their families had shown. The incredible resilience of the people I encounter every day.

I thought what I would want to remember from this year would be only the good things. But there’s something sacred about the hard things too; the journey we took, and emerged from, or are still on. The community of neurodiversity our son has introduced us to; the many things we have learned from him. The mental and physical fortitude Nihit has. His courage, his calm. Maybe it’s important to remember the hard things—not always, not to let them take over—but in moments.

Nihit watched me write this, because he wants to write something about this year as well. We both have felt the urge to recap the journey. He asked if I have a writing structure, but I don’t; I’m all stream of consciousness, especially for this newsletter. But I do have a tell, which is that when I’m writing to process something, I often end on a “lesson,” and that can be considered trite in writer circles but alas, it is my style.

And so my lesson for 2023 can be surmised from my resolution for 2024, and there’s just one:

I resolve to appreciate it.