Chapter 54: A moment in Los Angeles:

 Chapter 54: A moment in Los Angeles:

              When I was in college, my extended family developed a tradition of celebrating Thanksgiving early together in LA. My Aunt Elaine would host this year and she forbid from coming anyone who was unvaccinated. I was initially relieved because when it was announced I was immunocompromised and vulnerable to severe infection. Thankfully, at the time of our Thanksgiving I was no longer immunosuppressed. In fact, the new medications boosted my immune system. While an infection couldn’t proliferate unhindered, my immune system’s enhanced response still put me at risk for severe complications. The immune system is a blunt offensive shield predisposed to cause collateral damage.

I was thankful for other reasons as well. Limiting guests by vaccine restricted many unsolicited opinions that had exhausted me. Family members who told me to avoid traditional medicine in favor of herbal remedies would be absent, as well as those who unapologetically and loudly espoused Trumpian far-right ideologies of intolerant segregation and violence. I’d seen in patients the physical cost of those violent and careless words. When will we learn that the cost of privilege is people?

…

I received my booster shot of the COVID vaccine and my flu shot two weeks before departing. While I was probably safe with the initial two doses, I didn’t want to be an inadvertent silent carrier. Aboard the plane there were several people coughing—whether from the dry recycled air or something else, I was unsure. The coughing was stigmatizing. Trust evaporated. Is that person vaccinated? Are they infected? Are they going to make me sick, and then what do I do? Did they get tested before coming on? Could I ask the flight attendant about their health status? I was full of judgements, and it was unfair. But these people scared me: If they had any communicable illness whatsoever, I could become ill and have a lengthy pause on therapy. I could not afford pausing therapy.

I’m ashamed to admit, but I started to think myself special. I imagined that people should see my treatment helmet and treat me differently: I should be moved away from coughing persons on a plane without asking, I should be given extra space or upgraded to accommodate my medical devices, and I shouldn’t have to go through the same airport rigmarole as normal people because my time was limited and therefore more valuable. And despite these feelings I wanted desperately to be treated like a normal person with normal health and normal abilities—for employees not to ask if I need help when they saw my equipment and baggage. For people not to stare with pity once they learned the purpose of my medical devices. Thankfully, however, I was most often treated like a normal person with a strange helmet and backpack. Special treatment could create ease, but at the price of dignity and independence.

Aunt Elaine picks me up and we go to her lovely home. Because of my new keto diet, she starts with a tour of kitchen. She excitedly presents all the snacks and foods she’s bought and believes are keto-friendly. They all are, and I thank her. She talks about some of the thanksgiving meal components—she’s made a separate stuffing with sausage in place of bread, which tastes even better than regular stuffing! Then she shows me my room and helps me with my bags. Elaine is fantastically generous and attentive, and I felt lucky to stay at her home. I felt incredibly accommodated: Elaine anticipated my needs without my input, yet never made me feel as though I couldn’t do something. Even as I gratefully accepted her help, she still managed to preserve my dignity and independence.

I thought about how often patient dignity is forfeited in the hospital. How many patients at the VA were admitted and appeared unable to care for themselves? They had gotten themselves through life, maybe even fought in a war. This was a generation that took pride in believing they could “pull themselves up by their bootstraps.”  All the while, after a quick assessment these people are made to feel like children again as we coddle their every basic need without even the tiniest request. How many times had I felt that it was my responsibility to provide additional elements of “comprehensive care” at the expense of the patient’s sense of dignity? We could be more like Elaine in healthcare. We could do better.

That evening we drove up to Palm Springs to see my Great Aunt Retha. It was a grueling and uncomfortable 10 total hours in the car and my back hurt for nearly a week after. Nonetheless, the dinner was lovely; my sea bass was beautifully cooked and buttery. I hadn’t seen Retha in over a decade and a half, and I was happy to see she was doing well. I relay to her my last shared memory: she had given my brother and me dairy-free cheese, whose texture and taste were viscerally and unpleasantly memorable. She laughed and agreed that the fake cheese was terrible. She asked me how I was doing given my brain cancer diagnosis. I had briefly forgotten that her late Husband had also suffered from brain cancer, although I never remembered seeing him because he had always been too sick to visit. I felt sorry that she would have to be present for that horrible journey again. At the thought of worsening sickness, I began to feel nervous and fearful again. I looked for another conversation that might provide a safe and temporary distance from my reality. Back at Elaine’s I went straight to bed, thankful to have prepared most of my equipment and sleeping arrangements prior.

The following morning Uncle Mitch, Zach, JP, and I go explore a nearby shopping street. While it is November, the sidewalks are a sweltering 80 or more degrees and I do my best to avoid the sun so that my treatment device doesn’t overheat. After a couple hours, we returned to find Elaine working to get things ready in the kitchen. We attempted to help a bit, albeit poorly.

A little while later, everybody arrived. Some were characteristically late, which had become something of a tradition and expectation. It was lovely seeing the whole family again, but I was quickly exhausted by repetitive conversation. “How are you doing? How are the treatments? It looks like you’re doing well! We’re so happy.” I felt a duty to be positive and optimistic, even when it was truly how I felt. I felt like the emotional keystone—if I showed signs of weakness or damage or instability, would the delightful energy of the dinner collapse? I was being silly: my emotional state was not truly so critical, but it was a feeling I had developed slowly over the past several months. I was grateful for everyone’s investment and care and curiosity. Sure, it could be a difficult to repeatedly discuss my condition in the moment, but I knew I was lucky and had insurmountable support should I ever need it. Once we had gotten through the cancer conversations, I had a lovely time discussing Paris and NYC, especially with cousins.

We’re lucky enough to generally choose many aspects of our lives—where we live, who we marry if anyone, our careers. But we don’t choose most of our families and we’re stuck with them even if we tactfully ban their visitation. The lack of choice is character building. We learn to live with and make the most of what and who we have; we’re forced to understand that most of life is chance and luck and kindness. Even if they can be dreadfully annoying, we must value and be grateful for our families and the ways they build us. I wish that it didn’t take cancer for me to realize how lucky I’ve been.