1.5.2023

When I was a kid, the goal we were taught by my dad was not only to be the best, but to be twice as good as the next kid, so that there could never be doubt in anyone’s mind who was the best. How to achieve that goal? Study hard and accomplish lots!

When I was avidly playing tennis, my partner was a kid named John Lyons, who had been a “Wilson free-lister” as an adolescent, meaning that every few weeks a “rep” from the Wilson sporting goods company would drop by his house and leave him one or two free new rackets. His approach to playing was very different from mine. His goal was not to rack up the best score, but to beat his opponent by one point. He had a “loosy goosy” style of play most of the time, but when the situation called for it he could ramp his game up to a high level if that was what was needed to be one shot better than his opponent. (Now, forty years later, John is director of equipment development at Wilson.)

This was my first exposure to the idea of being not the best, but “good enough”.

There is a saying, “good enough for government work,” which means being mediocre, just good enough to get the job done. I never subscribed to this goal. It wasn’t good enough for me.

However, as life goes on and the challenges grow closer and more threatening, back surgery, hip replacements, cardiac arrests, or cancer, the goal becomes just to survive, to do just enough to live another day. When Carol and I were fighting against her incurable metastatic ovarian cancer, the goal was to find a reason to get out of bed in the morning. Each morning we stayed in bed until eleven AM, trying not to wake up or open our eyes, “cringing from another day” as Charlie Brown used to say. Sleep was my friend, and waking up was the retreat of my friend, replacing it with the depressing reality of our life. We would say to each other “Do you wanna do the spelling bee?”, meaning the New York Times word puzzle with which we started each morning. We would spend about an hour and a half doing the puzzle, at the end comparing our findings and compiling our combined score, then trying to reach the thresholds for “genius” or “queen bee”. We referred to the “hint” (“cheat”) website of William Shunn, which gave detailed clues to help us achieve our modest goals. (Since that time, the Shunn website seems to have been incorporated into the official NYTimes puzzle…)

After that, we would get out of bed, put on our robes or throw on some clothes, brush our teeth, and go downstairs to “start the day”. I would take my post in my “office”, the gray fold-out loveseat in front of the TV. The loveseat was not long enough for my entire body, so I would put two small pillows under my knees. This felt good with my lower extremity neuropathy, so I would ease into this position and settle into a sleepy resting state.

Carol would split an English muffin and toast it for us, butter it, and bring me my half. With her total-body neuropathy from taking Taxol, this was a big effort for her, but she felt that she was taking care of me and so she enjoyed doing it.

By the time the muffin got to me I was often already asleep again, and it would often sit for an hour or more before I sat up to eat it. After I ate it I would lie back down and go back to sleep.

I slept so much for several reasons. I was depressed by our hopeless situation, helpless against the siege of this invisible, silent, inexorable invader which was slowly but surely sapping the life force out of Carol. I was also oversedated for the following reason: when I was emerging from the two-month period of medically-induced coma which was necessary to sustain me on ECMO (extracorporeal membrane oxygenation) life support, I was delirious. I required a high level of sedation to prevent me from pulling out my lines and tubes, some of which were life-sustaining, for example my dialysis catheter. When the right level was reached, changes were made gingerly, and so I was released first from the hospital and then the rehabilitation hospital in a heavily-sedated state. (In fact, I almost didn’t meet the criteria for being discharged from the rehab because whenever they came to get me for the next activity they would find me asleep in my room.)

When I met my new psychiatrist Caroline, I was nearly in a coma. I pleaded with her to wean me off of my sedatives, and she complied, but very, very slowly. (e.g. 0.25mg per month) And so it was that, nearly a year out from my event, after being off of Risperidone for over a month, I “woke up” like Rip Van Winkle, just in time to face Carol’s cancer with her in her hopeless struggle for survival, and on top of that the COVID pandemic.

During this time I asked Carol if my presence was doing anything to help her. She answered that it was, that my being there helped her not to feel alone. In other words, my presence was enough. I took some solace in that. I felt totally useless, but Carol never expressed any frustration about my lack of positive energy. I think that she was just happy that I was alive, lying in the living room with her while she read about her different treatment options or talked on the phone with her friends or her sisters. The latter conversations I dreaded, because they would usually be a rehashing of all of the setbacks of the last few weeks, in gory detail. Because I was too disabled (sedated) to get up and do anything, I was a prisoner, trapped into reliving the last few weeks of our depressing life.

There were several phases to my emergence from my coma. The phase which I describe above was really a light napping sleep, during which I heard everything but did not respond to anything. The next phase was one in which I played on my cellphone. I didn’t read or surf the net, I played only one game, Threes, which David had introduced me to. It was a maddeningly simple game which had almost unlimited levels. I played Threes so much that I actually burned its starting screen into my OLED (organic light-emitting diode) phone screen. David was an expert at the game, so I always aspired to reach his best score, in vain.

In the next higher phase of my emergence, I spent all of the time in my “office” on my cellphone, on Facebook. I searched Facebook for old friends and co-workers, and reached out to them on Messenger. I became FB friends with an emergency room doc in Sydney, Australia named Bree and texted with him and his friend Fred for hypomanic hours in the middle of the night. I found Jean Sutherland, my cool fifth-grade teacher. I found Paul Greenberg, my elementary school classmate and Westville neighbor, and his wife Allison, who sustained a massive hemispheric stroke at the age of 49 and was wheelchair-bound but cognitively intact. I learned that he was her caregiver.

I was nominally Carol’s caregiver, but I was too impaired to actually do anything on her behalf, except to drag myself to her chemotherapy days at the Dana Farber cancer center. Amazingly, I was able to do this even in my deepest levels of sedation, partly because most of the days consisted of sitting in the waiting room. Carol would read, and I would sit and sleep.

The days at the Farber were maddening torture. After waiting literally hours to see our doctor Lexi or our nurse-practitioner Ann, we would go to schedule our next chemo appointment. The young schedulers tried to be helpful, but always said the same thing: “Gee, she is full up that day! Let me see if she can add you on at the end (or beginning) of the day…” They would then call back and ask Ann (Lexi was usually completely booked), and give us a time of either 5pm or 7am! There was no way for us to get into any kind of rhythm with these appointments. We would either be waking up in the dark or going home in the dark. It was like some perverse animal experiment on circadian rhythms…

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1.25.2023

On the eighth of this month, Amanda and David sent out new pictures of Serena. She had just turned six months old!

The next morning I woke up in horror and looked at the calendar. I had missed Carol’s second Chesa, the anniversary of her death. How could I possibly have done that?!

In Korea, people do not celebrate the birthdays of deceased ancestors. They celebrate the day of their death, which is called their Chesa. There is no name for this in America. The best approximation of it would be “death-day”. So I and other Korean-Americans I know just call it Chesa.

I looked through my messages and emails. Had I missed one from David or Jonny, or Carol’s sisters? Could we all have forgotten this important anniversary?

I called Connie. “Yeah Ed, the same thing happened to me. I was thinking about it for the days heading up to it, but on the day itself I totally forgot about it. Don’t beat yourself up about it. I think we all needed a break…”

I had talked with David on the phone the next day, Friday the sixth, and he hadn’t referred to it at all. I called him and asked him about it. “Yeah, Jonny called me and we talked about it, but we were both kind of sad, so we didn’t dwell on it for long…” Our conversation that Friday was a bit disjointed. I could hear the clacking of David’s new, clicky keyboard while we talked. “Oh, I’m just going through my email,” he said. “Sorry, I’m a little distracted.” He sounded sad.

Finally I sat down, opened my laptop, and looked at this post. The date was “1.5.2023”. I hadn’t forgotten. Carol was at the forefront of my mind on that day, so much so that I was able, for the first time, to write about that painful, sad, depressing time. That was my Chesa tribute to her. This piece was the token of my love and remembrance.

One of my Korean-American friends is a stickler for Korean custom. “This s— that people do, writing group emails, having Zoom memorials, all that stuff, that’s not Chesa. Chesa is a beautiful ceremony where people bring food and liquor to the grave, light candles, lay out a mat, bow, and remember the deceased. Calling anything else Chesa is just bulls—!!”

I disagree, and this post is an example why. Even though at some level I completely forgot the second anniversary of my wife’s death, below the surface I remembered enough to write this post. I remembered enough. What I did was enough to tell Carol that I love her and will never forget her.

This was my true Chesa to my darling wife. I know that it was enough.

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2.2.2023

I have let this post stew for another week or so, and I think that it is good enough to publish. It isn’t my best post, but it’s good enough.

As always, my friends, thanks for reading.