4/4/2023/1

Again it is after midnight and my body is trying to go to sleep, but my brain is again bursting with my next blog post. (The last one was only a week ago!) Here it is:

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Seven OBVIOUS reasons I don’t need a kidney transplant (a comedy routine, OBVIOUSLY) (OBVIOUSLY, key words are in all caps…)

I have always wanted to become a standup comedian. No, actually, I have always wanted to become a standup comedian since I saw Ken Jeong. Ken Jeong is a Korean-American guy who becomes a doctor, and then chucks it all and becomes a comedy actor and standup comedian. When I saw Ken Jeong I figured, if one K-A doc can become a standup comedian, why can’t I? There is really only one condition left: to be funny. OBVIOUSLY, he is. Am I?

The answer is, OBVIOUSLY, yes. If I am not funny, what am I doing writing a standup comedy routine which is probably going to be read by at least thirteen people, of whom maybe four will read the whole thing (okay, I can be long-winded) and two or three will put a like on Facebook, or even write me an encouraging comment.

OBVIOUSLY (again: actually most of this stuff is OBVIOUS, which is why many of you won’t bother to read the whole thing) I am STALLING.

To continue STALLING, I am actually only funny half of the time. By now it is no secret that I am bipolar, or manic-depressive. So about half the time I am depressed and the other half of the time I am hypomanic, which means almost-manic. During the half of time that I am depressed I am not funny. Being depressed is not funny (unless you are Steven Wright). During the other half, one of my symptoms is that I crack a lot of jokes. Not all of the jokes are funny. Maybe, if I’m lucky, half of them are. However, during these hyper spells I am talking so fast that I end up saying something funny every minute or so. I am sure that must meet the cut-off to be a funny person…

Unfortunately, as with most of my writing, I will write something I think is funny late at night, but the next morning or so I read it and think “This is not funny, this is s***!” And then I throw it away. However, in this wonderful digital age that we live in, it is actually almost impossible to really throw away something you’ve written. Whatever you do, it doesn’t really get thrown away! It gets hidden somewhere on your hard drive, in some “backup file” with a weird name with a lot of special characters in it, or better yet duplicated multiple times in “the cloud” (i.e. the Internet), and therefore impossible to expunge from the face of the earth.

OBVIOUSLY, I am still STALLING.

I was inspired to write this post by a comedian named Tig Notaro, who went VIRAL on the Internet by doing a standup routine which started “I have cancer. How are you?” and then going on and talking about three miserable things that happened to her in rapid succession. First, she became deathly ill with C. diff. Then her mother hit her head and died. Finally, she was diagnosed with bilateral breast cancer. News of her “GROUNDBREAKING set” went VIRAL on the Internet, followed several days later by an audio recording.

Another comedian, a Japanese-American named Atsuko O-something (some long Japanese name I can never remember) told the following Biblical joke: Her brother bought an expensive new car called a Genesis. If she were to buy herself a new car, it would have to be called a Job.

I actually take offense at Tig’s set being called “GROUNDBREAKING”. (OBVIOUSLY, we’re on a first-name basis now.) (OBVIOUSLY not really. That was a joke.) (If you have to tell people it’s a joke, does that mean it’s not really funny?) YEARS ago, I did a comedy sketch called “Being a cardiac patient is no fun” which began with my describing my cardiac arrest a few months before that. For SOME REASON my set didn’t go VIRAL on the Internet. That may have been because only four people saw it (one of them being my dear departed wife Carol, plus the waitress and the bartender), but I did go on to publish a transcript of it on this blog, where at least seven of you saw it as well. GROUNDBREAKING my ass!

OBVIOUSLY, I need a bigger audience for MY GROUNDBREAKING humor. However, I am too PROUD to link my blog to Twitter (where Donald Trump could read it), Instagram (where my own children and all of their millennial friends have gone to escape us baby-boomers who have taken over Facebook), and especially Tik Tok (God knows what that hell that is!). So OBVIOUSLY I am stuck with you twelve (or so).

OBVIOUSLY, I am still STALLING.

I was originally going to use the title “I need a kidney transplant.” However, again I am too PROUD to go “begging” on the Internet for a new kidney. So I cleverly changed it to “Seven OBVIOUS reasons I DON’T need a kidney transplant”. For the linguists among you, this is an example of irony, that is, saying something by saying the opposite. (Or is that called sarcasm?)

I just noticed that it is April Fool’s Day. I suppose I could claim that this is an April Fool’s joke…

True to my standup roots, my new title is a nod to George Carlin. (My fifth comedian reference in only five minutes!) (The millennials among you, if there are any left, will recognize him as the original Mr. Conductor on the Thomas the Train show. Ringo was his replacement. Or was it the other way around?) Anyway, he went VIRAL (even before VIRAL was even a word), by talking about the “Seven words you can’t say on TV.” If you don’t know or forgot the words, here they are: beep, beep, beep, beep, beepbibeep, beepbebibeep, and “tits”. I feel okay spelling out “tits” because I agree with George that it doesn’t even belong on the list. (“It’s such a friendly word.”)

STALL, STALL, STALL…

What’s up with my kidneys? My kidneys are going downhill because the best treatment for bipolar disease is the drug lithium, which kills off the kidneys gradually over the years in 100% (yes, that’s what I said, 100%) of patients. I took it for twenty years, until my kidney function was down to 25% of normal. Since I stopped, my kidneys have continued to die. Apparently, this is the usual course of events.

My story has a hiccup to it. When I had my arrest, my kidneys shut down completely and I was put on hemodialysis. Hemodialysis was a truly miserable experience (that’s a whole nother story), and I decided that if I had to continue doing it, I would somehow find a way to end my life. But again, really I wanted to live, and my kidneys came back, against all odds. (Does anyone still listen to Phil Collins?) After two weeks I began to pee again (I remember the joyous moment when that happened in the middle of the night. It was a geyser, like Old Faithful!) My kidneys returned to their baseline. However lousy that baseline was, it still exceeded all of my doctors’ expectations, so no one complained.

Okay, I’m done STALLING! (Drum roll) Here they are (finally!): the seven OBVIOUS reasons I don’t need a kidney transplant. (Remember, that was my title…) 1) I don’t want to spend the rest of my life being “a patient”. (My friend Bill, who is a transplant surgeon, said to me “Ed, we’re all patients!”) 2) I don’t want to make the same mistake as Carol, who clung stubbornly to life even after cancer and chemo had sapped it of all happiness (Is this still comedy?) 3) I do not want to compromise my “quality of life” by getting a new kidney and having to be paranoid every time the guy next to me on the subway sneezes. (Actually of course I never take the subway.) 4) (this is a good one) I wouldn’t want to deprive some poor, more deserving young person of a kidney. (This is total BS because in my heart of hearts I don’t think anyone is more deserving than me (yeah, I know it should be “I” but that sounds dumb…) 5) Right now I can’t really think of three more OBVIOUS reasons I don’t need a kidney. Maybe I should change the name of this post. But I’m feeling too lazy to do that right now, plus that would take some “oomph” out of the George Carlin reference…

Tig is OBVIOUSLY a PROUD person, and so am I. So when my new nephrologist (a young Korean-American) asked me if I could think of anyone who might be willing to give me a kidney, I said NO. When Bill asked me the same thing, I again said NO. Finally, my new transplant nephrologist, Dr. Ron Gao (a Southeast Asian-American; we may actually be related), told me that people even go to social media to find a donor. My first reaction (actually my third reaction) was, I am too PROUD to beg friends and strangers, much less relatives, for a new kidney.

At one point I formulated the thought that I would not feel comfortable asking anyone to give me a kidney to whom I would not offer one of my kidneys if the tables were turned. That would decrease the possible donor pool to zero…

Dr. Ron asked me if I belong to a church. I said NO. Actually, I have been involved with two churches, one my mother’s in New Haven, and a church in Harvard Square called “OCBC” (Old Cambridge Baptist Church). I even put together a folk mass there inspired by Godspell, but that was a half a century ago. Literally. Since then my attendance there has been so spotty (Carol was Roman Catholic) that I can’t really say I “belong” to the church. Besides, most of my friends at OCBC are older than me (yes, Doug, this means you) or dead, and Dr. Ron told me that I need to find a “young kidney”. (For example my brother looked into becoming a kidney donor for me, but his kidneys are almost as old as mine. Thanks, bro.)

I had heard the beginning of Tig’s story about two months ago and immediately changed the channel. I wasn’t ready to hear it yet, plus I didn’t feel like hearing someone else complaining about their cancer. Whoever was complaining was still alive, and Carol wasn’t. However, after going through these phases of denial, I was finally ready to hear Tig’s story. After surviving her three horrors (not to be competitive, but I can list for you six from my own personal book of Job), she decided that she wanted to have a baby. She wanted this so badly that she went against her doctor’s orders (actually people don’t say that anymore, so let’s just say “strong recommendations”) and tried to do IVF (in vitro fertilization; “test-tube baby”; people really don’t say that anymore) with a surrogate. Where did she find the surrogate? She asked for one (half-jokingly) on her podcast. She actually found one, but the procedure didn’t end up working, and she ended up adopting and living “happily every after”.

Learning that Tig had put her PRIDE aside and gone onto the Internet to find a surrogate finally broke through my resistance.

I only found my partner Sheila after I finally put aside my foolish PRIDE and put my profile onto a dating site. Until then I was convinced that I was too good for a dating site. I immediately met another OR nurse (operating room nurse) named Sheila. After texting with her for about twelve hours, the thought came into my mind “whatever happened to MY Sheila?” The rest is history. (She is sleeping peacefully in the next room. It is 1:22 AM now…) The point is that I only found her after I put aside my PRIDE, prostrated myself to God, and opened my heart to whatever was coming next. What was coming next was MY Sheila.

I told Sheila that I was thinking of naming this post “The one reason that I need a kidney transplant” and asked her what she thought that one reason was. My answer to this was “my kidneys don’t work”. Her answer was better: “you want to live.”

It looks like my time is up. It is 2:00 AM and I am falling asleep at the switch. My battery life is down to nine percent, and I have been on battery saver for a while now.

So let me put aside all ratiocination (BS) and say the OBVIOUS real name of this post:

I want to live. I need a new kidney.

Is there anyone out there who wants to give me one?

All I can give you in return is my undying gratitude. Really.

As always, friends, thanks for reading.

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.

11/30/21 & 5/21/22

(N.B. This is a portion of a larger story, the first part of which will not be published because of sensitive content. Please email me if you wish to read it.)

Carol died in January, 17 months ago, of ovarian cancer, after a brutal four-year siege. She was courageous and a fighter to the end. It took eight things to bring her down: her cancer, chemotherapy, chemo-based pneumonitis, a superimposed viral pneumonitis, a bacterial pneumonia (pneumocystic carinii pneumonia, recently renamed PJP pneumonia), a fungal pneumonia (diagnosed at the very end), a steroid myopathy which sapped her of all her strength, and a malignant ascites which robbed her of nutrients and sodium. At the end she could not even hold up her cell phone, and could not stay awake long enough to appreciate the photos on the digital picture frame that we brought her in the hospital when, because of Covid, she couldn’t have any visitors.

However, she did accomplish her dying wish, to hold and feed her granddaughter Ava. David and Amanda drove up from Alabama during Covid with Ava to spend the last six weeks with his mom. Carol lived the last two weeks of her life in a hospice house which overlooked the beautiful Cambridge Reservoir, being bathed by the love of her family for ten hours a day, which was all she could tolerate given her level of fatigue.

At the end she wanted to write a letter to Ava, for her to read when she was old enough. She started the letter with one line. “Hi Ava. I wish I could be with you.” That was all she could manage, but she had much more to say. Her experienced nurse Mary Jane suggested that I could finish it for her as an act of love. She is the one who called me, very excited, to tell me that Carol had “two weeks, tops” to survive. Carol held on for three.

We did Carol one better. Jonny and I brought our laptops to her room, and she dictated her letter. When she got too tired to do that, I continued to write a draft of what I thought she would say next, and read it to her. I was almost always right. (After all, we were together for forty years.) We wrote up to when we met, which I have covered in my blog.

After we had been in the hospice house for a week and a half, our social worker Janine informed us that we were about to lose our Medicare benefits, because Carol was “too stable”, and not using their resources. I asked her which resources she was referring to, and she said “iv Dilaudid and Ativan, for example”.

When she left, I took Carol’s hand and said “Don’t be a hero. If your nurse asks you if you’re having pain, say ‘yes’. If she asks you if you are anxious, say ‘yes’. If she asks you if you want Dilaudid, say ‘yes’. Do you understand?” She nodded yes.

At stake was $300 a day for as long as she was there, which we were hoping would be a long time.

She was very peaceful and slept most of the day when someone wasn’t giving her stimulation, like Ava. At one point I asked her if she was giving up. “No” she said, slightly annoyed at the question. “I’m just resting.”

The kids had helped me to buy a new laptop, an Acer with a nice 15-inch screen and a solid-state drive (resistant to shock), which they insisted upon. “I am not going to let you buy a laptop that doesn’t have a solid-state drive” Jonny told me.

So one evening I brought my new laptop and my little Blue Bose Bluetooth speaker in to Carol. The day before we had made the plan to simul-watch “Baby Boom”, our favorite movie, but Carol got caught up in something and couldn’t watch it. I watched it with David and Amanda at home, and for some reason which I couldn’t completely understand they hated it. Oh well, I thought, I wasn’t going to worry about it too much.

So I set up the Bose with the laptop, which proved to be a little tricky. I called the kids at home for help, but then it started working, and sounded quite good.

The movie was quite long, over two hours, and so I thought we could just watch until Carol got too tired, and then I would leave. We had watched it many times before, and knew all of the scenes, so Carol “watched” with her eyes closed and a peaceful, happy smile on her face.

We watched until our favorite scene, when Diane Keaton pulls a nutty and collapses in the snow, and wakes up in the office of Sam Shepard, a doctor who turns out to be a veterinarian. She goes postal on him, screaming “I’m spilling my guts out to a VET??!!” and turns to leave. She whips open the curtain only to find a 300-lb sow laying on its side on the examination table. She screams and runs out of the office.

At that point it was ten o’clock, so I closed my laptop and kissed Carol on the forehead, and said “I’ll see you in the morning, honey.” She answered me only with that angelic peaceful smile.

The next morning we had an appointment with the new palliative care doctor at 10am, but I got up at 630am full of beans. I checked my email and wrote a message to my old psychotherapist Dina, explaining that Carol was dying and asking her if she could see me again. Then I grabbed a box that had about five vacuum bottles for her peritoneal catheter, threw in a few more items, and headed off to the hospice around 830am.

When I got to Carol’s room she was sleeping. “Your hubo is here!” I announced cheerfully, putting the box down on the chair next to her bed. She didn’t stir. I reached down for her wrist, and her skin was unusually warm, even hot to the touch. Usually her skin was cool.

I reached for her face, which was turned slightly away from me. I tried to turn her head. It was dead weight. I felt for her radial pulse, and couldn’t find it. I went to my fanny pack and fished out the new sat probe (oxygen saturation) which I had received from Amazon the day before. Carol didn’t trust my old sat probe, which constantly needed new batteries and required a lot of fiddling before it read. I thought it was accurate enough, but gave in when she told me that she had bought one for Jonny for twenty bucks. I opted for a 45-dollar one which had an onboard pulse display.

I put the probe on her finger. It showed a flat line. She was dead.

I went outside, where Mary Anne was washing her hands and gowning up to come into the room. “She’s dead” I said. “No, she isn’t, I was just in there!” she said. We both went back into the room, and she saw the flatline image on the sat probe. “I’ll say that you pronounced her at 835am” she said, reaching for her clipboard but keeping eye contact with me. As her husband I was not supposed to pronounce her dead, but Mary Anne honored the fact that I was a doctor, and had indeed been the one to find her dead.

I reconstructed Carol’s final hours. Shortly after I had left, her nurse Tracey asked her if she was having any pain. She said “yes”. She asked her if she wanted iv Dilaudid. She said “yes”. Tracey gave her 1 mg, the maximum amount allowed by the doctor’s order (and twice as much as I would have ever given her, unless I was TRYING to overdose her.) She slept for ten hours, and let go of life one or two minutes before I arrived.

Her oncologist Alexi said to me “I find that patients often choose to die when there’s no one around. I think it’s because they don’t want to upset their loved ones.” If Carol had tried to die while I was present, I would have shaken her, held her airway open forcefully to stimulate her to breathe, and done CPR if necessary, disregarding the DNR (Do Not Resuscitate) order which she had signed the previous week. It would have been futile. Even if it prolonged her life for another day, in the long run it would have been meaningless.

So, I reflected, her last words to me were “I’m just resting”. Her very last words, spoken in my absence, were “Yes” and “Yes”, as I had instructed her.

Regarding the large dose of Dilaudid, I realized that the job of the hospice nurse is not to prolong their patient’s life at all costs, but to give them and their family the gift of a peaceful death. Tracey had done that for us.

5/21/22

Yesterday was the six-month anniversary that I am sharing with my new love Sheila, who is upstairs in bed sleeping. I am sitting on the sofa in the living room of her townhouse in Fall River with a heating pad under my butt and sacrum. My back is suffering from a busy week: on Tuesday I played golf with Jonny, who is recovering from Covid, and on Wednesday I played with my friend Jack. Between golf and making love, my lumbar area is in a state of indignant shock.

When I played with Jonny, I was climbing up a bunker and feeling the strain in my legs. I began to curse my permanent neuropathy, but then remembered that it was the result of the ECMO life support that saved my life three and a half years ago. So I reframed it to, every time I feel the stiffness in my legs, I can be grateful to have been granted this “bonus time”, this cherry on the hot fudge sundae of my life.

Last year I was lying in “my office”, the loveseat in my living room on which I spent almost all of the first two years after my arrest, staring at the ceiling and asking God why no one was answering my phone calls, even my two sons, and why he spared my life. What was my purpose? Did I even have one? Around that time my older brother said to me in a phone conversation “Hey, Ed, maybe God spared your life so that you can take care of Dickie!” Dickie is my kid brother who is afflicted with a severe endstage case of schizoaffective disease. When I heard him say that, I got pissed. God didn’t spare me to babysit my hopeless brother Dickie, he spared me so that I could bury and honor my wife Carol. At that time I didn’t know that he would send me Sheila as well…

Sheila is sleeping in the master bedroom which we renovated over the last two months. It turned out beautifully.

I have been granted a new life by God, and, I am convinced, by Carol as well. This morning in the bathroom I imagined that Carol was looking down at me from heaven and saying “Ed, where are you? Who is this that you are in bed with?” but thought again, and heard her say “Good for you, Ed. This is what I wanted for you. Enjoy it and milk it for all it’s worth.”

Last week for the first time I dreamed about seeing Carol. She was young and radiant, standing beside an empty tennis court. Her hair was uncharacteristically straight, like Sheila’s. I went up to speak with her, but she turned and walked away from me.

I didn’t have the sense that she was mad at me, but that she was instead envious of what Sheila and I now have. After we married in 1985, we turned our attention away from each other and onto the job of having kids and building a family. We overcame infertility by Carol undergoing a major pelvic cleanout operation, and we saw David born with a life-threatening meconium aspiration and a friend lose their baby to SIDS. When Jonny was born we dealt with a mysterious ascites which turned out to be due to an iatrogenic hole in her bladder. By the time the kids were out of the house, we were dealing with a litany of medical problems which culminated in my cardiac arrest and Carol’s ovarian cancer and death. So for the last 35 years of our relationship we didn’t have the luxury of being alone together, working on us and growing our love. Instead, our love was forged in the crucible of life’s struggles and hardships. Maybe that’s why at the end it was so strong.

Sheila and I will never have children together. (Not even by adoption, which I half-seriously asked her about last week. I got a hard “no”.) We do have three grandchildren, ages one-and-a-half, ten, and twelve, and are expecting our fourth in six weeks or so. And of course we have Max, our 17 year-old Bichon dog (who is 99 in human years)…

As a result, we have the luxury of working on us, and we are doing that very intensely. We are careening together down a double black diamond ski trail, holding on to each other for dear life. And life is dear to us these days, every day an amazing blessing.

Yesterday I had my biweekly phone call with David, and we talked about the tomatoes that they had planted in their garden. That reminded me of when Carol ordered a small tomato plant through the mail and planted it next to the fence between our backyard and Bev’s. Every day she went out to water it until the prednisone took her strength away and she was too weak to climb up and down the four steps to our deck. I took over the care and feeding of the little plant, and took pictures of it on my phone to show Carol how it was doing. It grew one edible cherry tomato and several smaller ones. In the past we had grown tomatoes and they had metastasized to take over the entire side of our lawn. This time the little plant fought for its survival, much as Carol did for hers. In the end both of them died.

When I got out of Tufts Medical Center after the six weeks that the nursea and doctors there fought for my life, I worried about how long I could expect my coronary stents to hold up. A year? Two? But my doctors didn’t seem worried about that. They were just checking me and checking my numbers, and the future was pleasantly uncertain.

This is the first time in my life that I have been able to use that phrase “pleasantly uncertain.” Uncertainty has usually been the enemy, the thing that I dreaded the most, for example how long was Carol going to live?

But now the only certainty is that I am going to eventually die, as is Sheila and everyone else in my life and on this planet. The only question is, how long is God going to give us? Life is a gift, not a right. Every breath we take is a gift. The only questions are, how many breaths do we have left, and how well are we going to use the precious time that God has given us?

When I asked my younger brother to help pay for Carol’s gravestone, I asked him if he thought putting my name on it was a hypnotic suggestion that I had died too. He said “come on, Ed, who else are you going to spend 40 years of your life with?” I went ahead and did it.

But now, I am with a wonderful woman whom I have known for 15 years. If we are blessed with 25 years together, that will add up to another 40. That’s what I’m shooting for, 25 years. We are celebrating our six-month anniversary. I just want to string another 49 of these suckers together.

Now it’s time to wake Sheila up and go celebrate.

God has given me the blessing of two soulmates in one lifetime. I’m not going to waste it…

As always, friends, thanks for reading.

1.5.2022.2

…on the first anniversary of her departure. From her loving husband Ed.

Honey,

One year ago you closed your sweet eyes for the last time. One year ago, to the minute, you stopped breathing, and crossed through the gate into Heaven, where you got the wings that you so richly deserved. One year ago, I put on your finger (near your wedding band) the 02 sat monitor that you asked me to buy from Amazon, which I had received only the day before. It showed a flat line, and I knew that you were gone. One year ago marked the end of a forty-year run for our remarkable love, a love which will overcome death and live on forever, even after my death. One year ago marked the end of my first life on Earth, the life that I spent with you, my soulmate, my love.

Six weeks ago I started my second life on Earth, with the new soulmate who was sent to me by you and God. (I think you are in cahoots.) You remember her from fourteen years ago. Her name is Sheila. She thanks you for passing me on to her, for loving and nurturing me, for teaching me how to love more fully as a husband and a father to David and Jonny, a father-in-law to Amanda and Phyllis, and a grandfather to the incomparable Ava.

Today I am sending you this missive in accordance with our long tradition of exchanging messages on our special days. I will listen throughout the day for yours. I can already see the muted sunlight of the new day, the winter sadness of the bare trees, no birds or squirrels yet but I know they will come. You continue to tease me through Sheila’s thermostat–I can hear your gentle laughter as I struggle and swear trying to adjust it. I feel your love through her dog Max, who is 120 years old but like a little baby dog in his enthusiasm and excitement. He even humped my leg last week.

Tomorrow we are flying down to Alabama to be with David, Amanda, Ava, Jonny & Phyllis. We will talk about you, and will honor you and cherish your memory. We may even watch some of your memorial (I just thought of that), especially the slideshow. I may bring down Ava’s flute and play it for you (you haven’t heard me play it in a long time).

Our love molded David and Jonny into healthy and happy young men. Our love formed the foundation of self-esteem on which they have built their adult lives. They have confidence in themselves, they believe in themselves, and they love life. They are steadfast and loving partners to their soulmates, and they love Ava. So do we.

Carol, you accomplished your two dying wishes: you didn’t die of Covid, and you spent quality time with Ava. You met her, played with her, and fed her. You lived a full life in 72 years. When the time came, you were ready to move on to whatever God had in store for you. And you have taken good care of me even after your transition.

Never forget that I love you honey. (Just saw the squirrel you sent me. Also thanks for the butterflies.) I will always see your radiant smile and feel your gentle hands. You are always in my heart and soul, and I love you beyond measure.

Have fun up there.

Ed

11.9.21.1

…and almost succeeded. Here are the details:

It was September 15, 2018. Carol and I were getting ready to go to the Four Seasons Hotel downtown for an ovarian cancer conference. Carol had been diagnosed with ovarian cancer on March 17 of the previous year, and we had been struggling mightily to keep our morale up and stay positive. That morning I was tired (after all, it was early on a Saturday morning), and, for the first time since Carol was diagnosed, I felt tempted to say “Honey, would you mind if I sit this one out?” I imagined that she would let me sleep in and go by herself, but I did not have the heart to desert her. Up to that point I had faithfully accompanied her to every doctor’s appointment, every chemotherapy session, and every test.

I dressed up in a blue blazer and a red tie (something I don’t even do when I’m going to work–since being forced to wear a tie every day for six years in school, I hated to wear a tie), and Carol put on an attractive floral-patterned dress. Off we went to Boston.

The room was set up with long tables adorned with tablecloths, water pitchers, and thermal carafes of coffee. I had been trying to cut down on my caffeine consumption, so I made myself a cup of half caf-half decaf. That really didn’t do it for me. I had had a strenuous week at work (actually they were all strenuous), and I was tired.

We were sitting at the second long table, a few seats in from the left. A male doctor gave the first talk, which was unmemorable. As the second talk started, I put my head down on my arms, which were crossed on the table. I would just rest my eyes for a second.

The next thing I knew, I was face down on the floor. I was lying in about an inch of body-temperature water. There was a bright light behind me, and I heard a woman’s soothing voice. It was Dina, my best friend from high school. “Eddie, it’s all right…” she said. “You can go now, or you can stay. Either way, it’s your choice Eddie. Of course we’d like it if you stayed, but it’s okay if you want to go too.” I had a peaceful, almost sensual feeling.

I heard myself address Carol. “Honey, I could stay now, or I can go. What do you want me to do?” “Please don’t go”, she said. (Later on she told me that this conversation never took place; it was all in my head.) “Okay, I’ll stay…” I said, and as I said that I began to feel pressure in the middle of my chest, getting more intense by the second.

I realized that there were two EMTs (emergency medical technicians) by my side, putting stickers on me. “What are you doing?” “We’re getting an EKG (electrocardiogram), sir.” Shouldn’t they be starting an iv first? I wondered. “What does it show?” “It shows that you’re having an inferior MI (myocardial infarction: heart attack).” “Well for God’s sake start a line and give me volume!” I said, as if speaking to a child. They did. I became aware of them taking my blood pressure. “50 over palp (palpable).” Everything went to gray, then black. (The next part of the story comes from Carol and my chart.)

Tufts medical center was just a few blocks away. When we reached the emergency room, the cardiologist, Andy Weinberg, was already there. He took one look at me and said “Let’s get him to the cath lab.” “But they’re not here yet.” “I don’t care, let’s go.”

Carol got to the cardiac catheterization lab just after I was whisked in. She was with a new friend, a nurse named Patricia. They heard a code blue called and saw many people run down the hall and into the lab. The chaplain arrived and looked confused. Carol took their hands, and they stood in a triangle and said a prayer for my soul, and for my life.

Inside the lab all hell was breaking loose. I had lost consciousness and gone into VTach (ventricular tachycardia) and then VFib (ventricular fibrillation). They began CPR, and then shocked me with 200 joules. I came back in sinus, but deteriorated back into VFib. They gave me lidocaine and shocked me again.

The anesthesia team arrived, led by a young Chinese-American doctor named Andrea Chai. They intubated me and started to bag ventilate me. The cardiac team resumed chest compressions and then shocked me again. “Call the ECMO (extracorporeal membrane oxygenation) team” Andrea ordered. They continued their resuscitation.

The CPR (cardiopulmonary resuscitation) lasted 33 minutes, and I was shocked seven times, all but the first at 400 joules. The ECMO team got access through my groin and started me on life support, essentially heart-lung bypass. They put me on a ventilator and started a Versed (midazolam) drip. (I have no memory of any of this.)

They placed an LVAD (left ventricular assist device) into my left groin, which was the size of a ballpoint pen. This went into my descending aorta and worked like an Archimedean screw, pushing blood out to my periphery.

In the meantime, Dr. Weinberg placed two stents into my left anterior descending coronary artery, a long one into the main artery and a shorter one into a branch. He also performed an atherectomy on my right coronary; the ruptured plaque at the takeoff of the artery had caused my heart attack. There was one more 70% stenosis in a diagonal branch of the LAD. But by this time the team was exhausted and Weinberg decided to leave it for another day, if such a day should come. One of the doctors went out to the waiting room and told Carol that I had a ten percent chance of surviving the night.

Seven hours later, I was taken from the cath lab to the CTU, the cardiothoracic unit.

An hour after my arrival, I was rushed to the operating removal for evacuation of a large clot which had developed at the LVAD site. The LVAD was removed.

During the next 48 hours, my kidneys, already functioning at 25% of normal based on long-term lithium use, shut down completely, a process called ATN (acute tubular necrosis). I was placed on hemodialysis. I was heavily anticoagulated to prevent my blood from clotting on ECMO. This had contributed to the groin bleed, and then led to heavy bleeding into my right lung, which soon became filled with blood. Dr. T.J. Fournier performed a six-hour bronchoscopy, fishing out wet clots until my lung passages were clear.

Carol told me that David and Jonny came into my room and sang songs to me, with Jonny playing on his trusty acoustic guitar. I have no memory of this, nor of the many family members and friends who came in to visit me one at a time (together with Carol). Carol had summoned my entire family of origin, and they took over the CTU waiting room for a month. They played board games, knitted, and composed Spotify playlists to play in my room.

As I was weaned from the sedation, a few experiences became memorable. The hemodialysis was torture. I was freezing cold and alone for most of the four-hour sessions. There was a window, but a large roof vent blocked my view. I could hear girls playing soccer outside. I felt the constant need for companionship, and even threw objects off my bed into the hall to get the nurses’ attention. By this time Carol was exhausted, and used the dialysis time to take a break from being constantly at my bedside. (Or else she was not allowed to be there.) If I had to live the rest of my life on dialysis, I prayed that my life would be mercifully short.

One night my prayers were answered. My life didn’t end, I began to pee! I remember feeling the urge for the first time in weeks, and then watching a miniature geyser issue forth from my penis straight up in the air! I tried to stem the flow with my hands, all the while calling out to my hero, my nurse Craig (who I later learned was a tech), thrilled that I would no longer need to suffer through dialysis.

Peeing became a challenge. Each time I tried I soiled my sheets, and the nurses had to change the entire bed. I couldn’t go while sitting either, and when I stood up my balance was so poor that I couldn’t stay upright long enough to pee. Finally I mastered peeing while supine into a urinal.

Later on, I remember getting an MRI (magnetic resonance image) of my head. The machine was extremely noisy, but I was oblivious. The MRI showed that I had a small stroke, which my doctors pooh-poohed, saying that it was a common side effect of the ECMO. I learned a year later that the reason I got the MRI was that I fell backwards off the scale when I was being weighed. Being anticoagulated, I got a big laceration which bled like stink and scared everybody. They were obligated to get an MRI to rule out an intracranial bleed. They were relieved to find “only” the little stroke. They never did tell my family about that incident, although they were totally transparent about every other aspect of my care. As a matter of fact, they spent literally hours discussing every detail of their decisions with my older brother, who is a physician, and David, Jonny, or Carol. My brother would come in at the beginning and end of his workday, exhausted, and then spend an additional hour or two going over my care with my doctors. Again, I have no direct memory of this.

While emerging from my medically-induced coma, I was frankly delirious. I tried to pull out my lines, including my nasogastric feeding tube and my hemodialysis lines. They had to one-on-one me with a person whose sole job was to protect my lines from being removed. I could not even scratch my nose without a strong hand grabbing my wrist and preventing me from doing it. It was yet another form of subtle torture for me, to have to endure itching without being able to scratch it.

One morning I discovered that, instead of shaving the stubble which was forming above my lip, I could pull chunks of skin off with the hairs attached to it. I was gleeful that I had found a way to avoid shaving! When my brother Harold came in and saw me doing this, he went out to the store and returned with a Norelco electric shaver. (See “A tribute to Habeb” in this blog.)

In the meantime, I totally lost my taste for hospital food. It was either too hot, too cold, or both, one then the other. When it cooled off it tasted to me like cardboard. Carol went to Mary Chung restaurant in Cambridge and brought me Mary’s delicious egg-drop soup. When I liked it, my niece Lily and her boyfriend Alan repeated the trips to get me more. Each trip required Carol to fight for a parking spot in Central Square, while Lily and Alan could double park and have one of them run in to get the soup. The doctors started me on the antidepressant Remeron (mirtazapine), which has appetite-stimulating properties.

After six weeks, including two to guide me out of my delirium, I was transferred to a rehab hospital north of Boston. My cousin brought me a large container of the Korean marinated beef dish bulgogi. I ate a few mouthfuls and absent-mindedly leaked most of the marinade onto the floor, where its sugar congealed into a hard mess. The cleaning people were never able to get rid of the sickeningly sweet smell during the two weeks I stayed there.

My mom came to visit me from Connecticut. My brothers had shielded her from the entire incident for fear of upsetting her too much, and so she was somewhat taken aback by my level of disability, and the fact that she had missed a period of critical illness.

At my discharge from the rehab, the nurses played the theme song from “Rocky” over the public address system, a routine sendoff for the successfully rehabilitated patients. An orderly pushed my wheelchair out onto the street where Carol was waiting in her Camry. We drove toward home, twenty five minutes away.

Five minutes from home, my butt was killing me, and we also realized that we had left my walker behind at the rehab. We pulled over at the neighborhood nursing home, and Carol went inside and pleaded with them to lend us a walker. Armed with the borrowed walker, we arrived home eight weeks after our departure to the Four Seasons. The fall season was almost over, and the nip in the air foretold the coming winter. With Carol’s help, I worked my way up the five deck stairs into our back door. I was home, and I was alive.

The following week was Thanksgiving, and my entire family congregated at our house for a huge feast. I looked at the food, incredulous that we could tackle such a huge meal. I picked at my plate with marginal interest. However, the mood was convivial. Everyone was relieved that I was back home safe and (relatively) sound.

During the next few months I experienced a wave of euphoria. I wrote several emotional pieces in my blog, including two short stand-up comedy routines (one was actually a heartwarming story) which I delivered at a local cafe to a minuscule but appreciative audience (mostly the waitresses and bartender) spearheaded by Carol. I enrolled in a cardiac rehab program where I spent the entire time slowly riding a reclining stationary bicycle. I made friends with a retired surgeon named Blake who happened to be a good friend of my brother.

After that, the heavy sedation which had been used to control my delirium in the hospital kicked in, and I fell into a depressive, apathetic state. I began to spend the entire day lying on the couch (actually a loveseat which was too short to lie on) with my legs up on pillows to relieve the lower body neuropathy which was a common after-effect of the ECMO. I had the depressing thought that my stroke was almost in the same exact place as the one which had lobotomized my dad at the age of 62. I was 65.

Despite the neuropathy and weakness which was the result of her chemotherapy, Carol cooked breakfast for us (usually scrambled or over-easy eggs and toast). For our second and last meal of the day we usually ordered out. Carol would start a load of laundry, and I would dutifully make the remaining trips down to the basement to move the clothes from the washer to the drier. Sometimes we did two loads at once, which required one extra trip.

I continued to accompany Carol to the Farber for her chemo sessions, which were usually marked by incredibly depressing CA125 blood test results. Each result was like a body blow to us both, and we would sit holding hands in the waiting room, looking out the large picture window overlooking Brookline Avenue and trying to push away thoughts of Carol’s impending death.

Each post-test depression lasted several days, after which we began to recover some semblance of our new-normal life. Carol would return to the Farber for acupuncture treatments, to which I also accompanied her and napped sitting in the waiting room. I was fascinated by the large sculpture of stylized zebrafish outside the Zakim center, and learned that each fish was awarded to contributing families for $3000. I wondered if I could raise the money among my family members to buy a fish for my brother-in-law, who had died recently of leukemia in Korea. (I couldn’t, and his wife, my older sister, later said that she was glad of it. It was no replacement for a proper gravestone.)

On days that I felt more energetic (and hungry) I would walk the short distance to the neighboring food court and have a plate of chicken teriyaki. Carol would renege on that option and eat at home.

I pleaded with my new psychiatrist to lighten up on my sedation, and she did albeit slowly. After about a year of oversedation, I finally began to emerge from my dopamine-blocked Haldol-like stupor.

During these days our only form of meaningful exercise became walking around the block, which each of us did alone in about eight minutes. (If it took longer I began to worry.) We didn’t watch TV. I spent my time either napping, doing nothing, or obsessively playing a cellphone game called Threes (well-meaningly introduced to me by David). I played that game for so many hours that I actually burned the starting screen into my cell phone’s LED (light-emitting diode) screen, which is almost impossible to do. Carol’s preferences were Spider Solitaire, Candy Crush, and Fishdom. Candy Crush actually was sneaky about taking money from the player in small increments, so she stopped playing it, but could not bring herself to delete it from her phone. She also read books about fighting cancer, and we did meditation exercises together (our one TV activity), to which we usually fell asleep until it turned dark. Carol had long phone calls with her sisters and close friends, which I came to dread because she usually repeated the fears and depressive thoughts that I was trying to protect myself against.

She did do remote Reiki exercises with my younger sister in Connecticut, with surprisingly dramatic effects. After one such session she jumped up and walked briskly around the block after not having done so for weeks. When she got home she began to clean up the kitchen and cook dinner.

Carol had frozen dinners delivered to us by a charitable group called Ovations for the Cure of Ovarian Cancer. The food was delivered by an attractive young woman with long chestnut hair, early on the cold winter mornings. When the food came Carol would rouse me off the couch because the large bag was too heavy for her to carry downstairs. In the basement I would unload the food into our full-sized freezer. Every month she would make a voluntary donation to defray the cost of the food.

We had little to wake us up in the mornings, so we would sleep late, waking up to do the New York Times Spelling Bee game together. We would play it competitively at first, then consolidate our lists and play cooperatively until we reached “genius” status, or on auspicious days “queen bee”, which meant that we got all possible words out of the seven letters provided. We got “cheats” from a website published by a man named William Shunn. Each day we would ask “Is it time to Shunn?” and then see how many words we had yet to find. When we reached “genius” at the same time, we called it “coming simultaneously” and gave each other a sexy kiss. Because of Carol’s neuropathy, that was the extent of our physical intimacy.

Our schedule on chemotherapy days was dictated by the Farber’s schedule, which always seemed to be nearly saturated by the time we made our appointments. As a result, we had no regular time, but either had to wake up before 7am in the frigid mornings or kill time before 2pm starts which left us among the stragglers at 8 o’clock in the evening, being tended to by the second-shift nurses. Together with the oppressive blood test results, this irregularity wreaked havoc with any feelings of well-being that we could muster between sessions, which were every three to four weeks until the end, when they became more frequent. So now we’ve pivoted from when I tried to die to when Carol was about to die.

This post is entitled “Three years ago I tried to die…” I believe that to be true. As an anesthesiologist, when faced with situations where my patient was threatening to die, I was used to having some measure of control. In this situation, as a doctor and as a husband, I felt that I had none. I spent the first year and a half of my wife’s (diagnosed) illness in denial, fighting all-out for her life. At that point, reality began to set in, and I realized that we were helpless, literally without help, against this cancer. This literally broke my heart. I flipped off an ulcerated plaque at the takeoff of my right coronary artery and tried to die.

I ended up fighting for my own life because Carol asked me not to leave her. After this prolonged horrific event, I realized that I had to survive her; it would not have been fair for her to go through my death twice.

I feel that God spared my life in order to allow Carol not to die alone, so that I could comfort her, bury her, and honor her memory as she deserved. I am grateful that I have been able to do all of these things.

Now I’m trying to figure out what’s next.

As always, dear friends, thanks for reading.

(Published 7.17.2021.2 on the Koh Family Google Group on the occasion of David’s 32nd birthday. Revised 7.25.2021.)

Thirty-two years ago, a boy was born in Boston with the worst meconium aspiration that anyone had ever seen. His Apgar scores were 1 and 4. He was intubated and sent to the 7 North NICU (neonatal ICU) at Boston Childrens’ Hospital. His parents were asked to give consent for ECMO (extracorporeal membrane oxygenation) life support if needed. (He did not need it, but his father did many years later.) After one day he was fighting to be extubated, and was given sedation and muscle relaxation so that he could tolerate the breathing tube, to rest his lungs for one more day. At the age of two days he was extubated.

At the age of four days he got the name David, which means beloved. He was also named Francis after his late maternal grandfather and a close uncle. Shortly thereafter his paternal grandfather Kwang Lim gave him the name Won-kyoung. His name became David Francis Won-kyoung Koh. At the age of one week he came home.

Two months later, his grandfather Kwang Lim died.

When he was 21 months old he was joined by a younger brother Jonathan. They became happy playmates and friendly rivals. As he grew up, David displayed a vivid curiosity and intense playfulness. He stayed up all night building a marble run out of paper and string. He became an athlete. He and his dad drove four hours from Maine during a vacation so that he could play in his town’s all-star baseball game. It was rained out. He became a prodigious soccer player, scoring ten goals per 30-minute game at the YMCA until his dad gently suggested to him that he could also pass the ball to his teammates. He stopped shooting on goal for the remainder of his long successful soccer career. 

He became an ultimate frisbee player and taught his dad and brother how to throw. He and his dad flew to Minnesota days after the bridge collapse so that he could play in the national tournament. He learned to play squash and became the captain of his high school team.

He went to MIT and met the love of his life. Their lives became as one, and immediately after graduation they married. He sang a hilarious solo with his college a capella group which delighted the crowd at the Kresge center and made his parents beam with pride.

He worked at a computer dating company in New York City and became the director of programming. He did well with the company’s stock options, and later started a college fund for his daughter. He was appointed by Obama to a small digital task force, and helped over 200,000 people to become American citizens. He became CTO of a division of Medicare.

He and his wife moved to Alabama where she accepted a tenure-track position in chemical engineering. They bought a house and built a new home, and he started his own company. He named it Sabaki, after a powerful and flexible move in Go. They had a child, and named her Ava Athena.

Six months ago, he lost his beloved mother to cancer.

David has met the challenges of life with a rare grace. He has become a resourceful and thoughtful young man who is wise beyond his years. He and his wife have become a formidable team, and together with Ava (and their two cats Mica and Niko) have become a strong and loving family.

As parents, who could ASK for more?

Happy birthday, David Francis Won-kyoung. You have brought us joy for thirty-two years.

We look forward to many more.

We love you.

Dad and Mom

5/9/2021/1 Read by David Koh on Carol & Anne Mastromauro Memorial Zoom May 8, 2021

From Georgia Orcutt:

Carol was my all-time favorite conversation partner. She could talk about anything, was a great storyteller, and a serious listener.
When something comes along that I want to share with her, I feel ripples of loss knowing that she’s gone.
And then I see her face,  her lovely warm smile, the twinkle in her eyes, and I remember her.
For example, last weekend, up in Vermont, I met a guy who lives on our road. He said he’d been to Cambridge once, and couldn’t understand why no one there had curtains in their windows.
 I immediately thought of a time Carol told me she hated curtains. She couldn’t see the point of figuring out how long they should be,
what material they should be, or what system of rods and hooks to use for hanging them up or opening and closing them.
 A memory like that brings her back for a little while and feels like a special gift.
 I look forward to opening many more in the days to come. 

From Christy Stolper:

My enduring memory of Carol is seeing her at Concord Academy frisbee games and other CA events. Her smile always went all the way up to her eyes. She made you feel as though you were the most important person in the room. Her love for her family was palpable.

12.16.2021.1

Eight years ago, my younger brother Harold had his portrait hung at Yale Law School in commemoration of his term as dean there. Because of work responsibilities I missed the portrait celebration, and so I decided to write what I would have said had I been there. Last December, when I was trying to write something for Ha’s sixty-sixth birthday, I rediscovered this piece, and together we adapted it and present it here.                  

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HAROLD HONGJU KOH: A BROTHER’S TRIBUTE

In a year and a half, my brother Harold will turn sixty years old, and it will be time to celebrate his Hwegap, the first cycle of his life on earth.  However, it seems clear to me that that’s exactly what you all are doing here tonight (after all, you’re hanging his number from the rafters of Yale Law School!!), so, never wanting to be left out, I decided to write this tribute to my brother Ha.  When Ha’s actual Hwegap does come, we can all write very brief essays: “Ibid.”

IT’S ALL ABOUT ME…

Whenever I write something like this, my wife Carol says the same thing: “This isn’t about (person X), it’s about YOU!”  I usually take this as a terminal criticism, and abandon the project.  This has happened any number of times in the last thirty years or so. (This is known in some circles as “chronic writer’s block…)  Well, the truth is, it is about me.  But it is also about my brother Ha, for in some ways we are inseparable.  When we were kids he strived to measure up to me, and as adults I often measure my accomplishments by his.  But, most importantly, we have grown from being older and younger brother to being colleagues, confidantes, and friends.  He was my best man in 1985, and in important ways he is my best man still.                

THE RE-NAMER

First of all, some terminology.  One of Ha’s most important contributions to our family was that he was the “re-namer.”  Thus, we went from the relatively normal names of Howard, Edward, and Harold to the ridiculous names of Howboob, Hebron, and Habeb.  Actually, I was the first to get my new name.  We were all watching an episode of the Twilight Zone where (unusually) they played a foreign adaptation of Ambrose Bierce’s story “An Occurrence at Owl Creek Bridge.”  Toward the end of the film, a delirious man stumbles down a dirt road calling “Hebby, Hebby!”, presumably a reference to his wife in some foreign language.  Well we all started saying “Hebby, Hebby!” to each other, and then the 10 year-old Ha (the same one who wrote that Eddie Stanky letter) somehow made the connection to “Eddie” and I became “Hebby”.  The finishing touch came at Camp Winni, where Reverend Avery Manchester made a statement in one of his handouts that Jesus might just as well have been Herman from Hebronville.  Thus, “Hebron” was born. (It wasn’t too much of a jump to come up with “Howboob” and “Habeb.”)

If you think this was convoluted, let me tell you what he did with “Jeannie”.  At the time we lived next to a four year-old boy who was quite clingy to Jeannie.  Whenever he saw her, he would call “Jeannie, c’mere!” until it started to drive her nuts.  Ha came to the rescue by altering Jeannie’s name so that the kid could not pronounce it.  So he told him that Jeannie’s real name was “Jean-a-roonie”.  Unfortunately the kid was smarter than he looked, and he learned to say Jeanaroonie quite easily.  So Ha lengthened it even farther to “Jeanaroonie-barrel a nika!” and told the kid that if he wanted Jeannie to come over he would have to say “Jeanarooniebarrelanika c’mere!”  That was too much even for this persistent little kid, and he gave up and went inside.

Actually, we didn’t call Jeannie by any of these names.  We used another Habeb concoction and called her simply “Beanhead.”

POLIO

Early on, Ha (short for Habeb of course) was quite concerned with his right leg, which had been affected by the polio which had attacked his spinal cord when he was an infant.  He was given a cumbersome metal brace to wear, and in order to avoid muscle contractures he was given passive stretching exercises for his calf for which he needed a helper.  Our dad became the person who twice a day for over an hour systematically stretched Harold’s calf muscles.  In those days (years) Dad was a pusher and a “yeller”, someone who might nowadays be called a “Tiger Dad”.  However, interspersed with Dad’s seemingly constant shouting,  he had moments of ease and even euphoria, usually sitting in his big chair in the living room reading the New York Times, and yelling “Guys!  I’m PROUD of you!” With Ha and his leg exercises, this nurturing side came out even more, and I think Ha grew up the stronger for it.

I have vivid memories of our childhood, although sometimes jumbled in time.  We had just moved into a rented house on West Rock Ave. in Westville.  At the then-Grace New Haven Hospital, Harold underwent an operation to staple the growth plate in his good leg, to allow his shortened leg to “catch up” to the good one, thereby curing his pronounced limp.  The morning of his surgery, his nurse gave him the “premedication”, a cocktail of demerol and scopolamine given as a shot about an hour before the operation.  Kids often were asleep from this combination on arrival to the operating suite.  As Ha was getting woozy, an orderly came in with a shaving kit, looked at Ha’s two legs, and began lathering up and shaving the smaller right leg.  In a growing haze, Ha said “Wrong leg!”  The orderly stopped and said “What?”  “Look at the chart!  You’re shaving the wrong leg!”  And then he drifted off into a narcotic sleep.  Even at the age of eight, Ha was able to protect himself from the vagaries of the adult world.

 THE CUBAN MISSILE CRISIS

 After the operation he came home in a full-leg plaster cast, which I found very upsetting.  Those were the days of the Cuban missile crisis, and my anxiety was high.  Every day at noon the Civil Defense siren would sound, and we would all climb under our desks to protect ourselves from a nuclear attack.  Meanwhile at home, our belongings were largely still in corrugated cardboard boxes on the bare wooden floors of our temporary home; this also gave me an unsettled feeling.  I feared what would happen in case of a missile attack, and I was especially fearful that Harold, hampered by his cast, would not be able to run away fast enough from the bomb blast.  And I was not strong enough to carry him!  I remember kneeling by his bedside at night praying to God to keep him safe.

 We lived on a little block that had a playground embedded in the middle of it.  Together with the neighborhood kids, we played stickball with a broomstick and a tennis ball, and kickball with a red rubber ball salvaged from our elementary school.  Within a few days of coming home Ha was using his cast to kick the red rubber ball further than any other kid in the neighborhood!  Perhaps God was answering my prayers…

THE COLUMBIA RECORD CLUB

When Carolyn came into our lives at the age of fourteen, she learned English in about two weeks and then took charge of a family of four brothers and a sister.  Despite barely reaching four foot eight, she was a tough taskmaster.  However, she did want to Americanize herself as much as possible, and so she enrolled in the Columbia Record Club, where you could buy twelve records for only one penny! (As long as you bought two records a year after that for exorbitant prices.)  She started off auspiciously with the Beatles’ Rubber Soul and Revolver, then branched out to Simon and Garfunkel’s Parsley, Sage… and Bookends.  She also got the Four Lads’ greatest hits, which included a cover of Jimmy Dean’s immortal song “Big John”.  All of these were rounded out by Peter, Paul, and Mary’s In the Wind, which included the song “Stewball”.

Years later, when impromptu entertainment was needed for Carolyn and Woong Kil’s wedding reception at the South Seas Polynesian restaurant, Howie, Harold, Jeannie, Richie, and I sang “Stewball” without rehearsal of any kind (we all knew it from the record).  The opening lyrics were “Oh Stewball was a racehorse and I wish he were mine, he never drank water, he only drank wine…”  In order to explain why we were singing a song about a horse who drank wine, the emcee Dr. Bob LaCamera introduced it as a “good old-fashioned nonsense song, and don’t even listen to the words!” For some reason (perhaps just being children), we were mortified.

DEBATING

When we were in school together at Hopkins, we formed a debating team.  Ha argued first negative, and I was the mop-up person, second negative.  The proposal was “Resolved: that Congress should establish uniform regulations to control criminal investigation procedures.”  Our very first debate was against the powerhouse Boston Latin, who came out with a gambit that we had not even heard of: the “trick case”, in this case gun control, an argument which no right-minded person could stand against. (This was in the decade of JFK, RFK, and Martin Luther King…)  They mopped up the floor with us.

After that inauspicious start, we regrouped and went on a tear.  We formulated strategies while walking to and from school, carrying our heavy non-ergonomic bookbags over our shoulders while trying different versions of our introductory passages out on one another. (“Rocky” training music here…) Our act became finely honed.  We did background research in the library (no Internet back then…) about cases like  Mapp vs. Ohio and Miranda vs. Arizona, and distilled them into magical 5×7 file cards which we indexed into an intimidating gray metal file drawer, which Harold carried from debate to debate.  Mr. Howie Preston, our team adviser, looked on proudly as we grew into a formidable team.  I developed a technique for showing point for point that the affirmative team had not met its burden of proof, which required not a shred of evidence on my part.  Ha used a more conventional strategy: facts.  He rebutted every fact that the first affirmative presented with an equal and countervailing fact.  Better yet, he often showed that that speaker’s quotes were taken out of context by producing and reading the full quote.  At the end-of-season Southern New England tournament, we beat the storied team of Brouder and Donlon from Fairfield Prep.  We had arrived.

At that point, though, our unbeaten streak was broken by a team made up of two girls from Branford High School.  Ha was more than man enough to handle Linda Donofrio at first affirmative, but I was too stunned by their closer, Gail Hershatter, to put together a cogent finishing argument.  We were edged out by a point.

Despite that loss, we still finished in the top spot overall, and Linda and Gail, who later became a close friend, applauded our accomplishment.  On the way home Mr. Preston drove through Burger King, where I got a Whopper meal and a large strawberry shake, which I consumed in three gulps.  When we got home, Ha ran across the front lawn holding up our winning trophy shouting “We won! We won!”  I, on the other hand, was a little overstimulated and ended up spraying my colorful shake all over that same lawn.

Now, when I hear that Ha has made an argument in front of the US Supreme Court, or the World Court at the Hague, or some other such place, I wonder if these experiences back at Hopkins had any part in shaping his debating skills.  To the extent that they did, I humbly take full credit.

MUNIENTOS

 Despite being high achievers, all three of us were procrastinators.  We managed to keep up with our numerous daily assignments, but always kept “English themes” and term papers till the last minute.  In the meantime, we became addicted to Marvel Comics, which we cleverly hid in the top drawers of our desks so we could simply lean back in our chairs and read them, and come to an upright position when we heard Dad coming up the stairs.

When the deadlines inevitably came, we had a clever solution: munientos (another Habeb-inspired term).  Two or three of us would stay up well into the night.  After about an hour and a half, Mom, who was always up very late, would come up the stairs with a tray of tea and cookies, and we would take a twenty-minute break with her.  After she left, we would work for another half-hour or so, and then one of us (usually Ha) would get very sleepy, and say to the other(s) “Hey, can you give me five munientos? (a pseudo-Hispanic bastardization of “minutes”) We would let him sleep for about ten minutes, after which he would say groggily “Can you just give me five more munientos?”  We would oblige, after which we would be quite sleepy ourselves. “Ha, why don’t you give us fifteen munientos?”  We would go to sleep, and after about five minutes Ha would fall asleep too, and we would all sleep until we were awakened by the rays of the morning sun.  In a total panic, we would finish our papers in about ten minutes, dress, and race off to school. With few exceptions, we got A’s on these papers, mainly because of the “teacher psych” strategy, meaning that we would produce excellent papers at the beginning of the year, then slack off imperceptibly as the year went on.  Using these ingenious methods we grew the legend of the “Koh dynasty”. 

THE THUNDERING THIRDS

Howie and I played several junior varsity and varsity sports at Hopkins, including soccer and tennis.  (I had a brief painful encounter with wrestling, which I will not go into here…)  We were not standouts by any means, but we were able to stay in the middle of the pack.  Ha was hampered at first by his right leg, which had much smaller calf muscles than his left.  Try as he might, he just didn’t have the speed to make the JV.  At that point, something great came along.  Our spirited history teacher, Mr. Karl Crawford, became the coach of the Thirds, historically the leftovers after the varsity (1) and JV (2).  He decided to make the Thirds into a real team, complete with team pride, cheerleaders, and a bright green tee-shirt displaying a colorful team logo. The team name: the Thundering Thirds!  Thirds-mania took over Hopkins that fall, and Ha was the starting right fullback of the team.  What he lacked in speed he made up in smarts and determination.  To this day I can see him wading into a backfield scrum and clearing the ball high over the midfield line, using his right leg!  The Thundering Thirds racked up a winning season for the first time in Hopkins history, and became the darlings of the school.  And my brother again showed that there was not much that could slow him down…

HONG KONG

In the summer of 1970, following my graduation from Hopkins, Dad took me and Ha on a trip to East Asia.  We flew by way of California and Hawaii into Tokyo, then to Hong Kong.  At this point we were scheduled to fly Korean Airlines to Seoul, but when we arrived we were informed that we had not confirmed our reservation and were being bumped to a next-day flight.  Dad was unusually accepting of this decision, but high school junior Harold was livid, and went into overdrive gathering information and ammunition.  “Look” he said, pointing at the small print on the back of the ticket. “It says nothing about confirming your reservation!  You just have to register once!”  He looked over at the line of passengers boarding the plane.  “Look, there’s a big group carrying bags with the same decal!  It’s a tour group!  We’re being bumped to make room for a big tour group!”  He stormed back to the desk, and I saw him hitting the ticket and gesticulating toward the boarding group.  He came back to us with a well-dressed man wearing a KAL suit.  “I’m very sorry for the misunderstanding, sirs.  We unfortunately cannot get you onto this flight, but we can make arrangements for you to stay at our flagship luxury hotel, Ricky’s Hyatt House.”  And then the magic words: “It would of course be at our expense.”  We looked at each other and tried not to grin too broadly. “I guess that will have to do…”

That night turned out to be the most relaxing night of our whirlwind trip.  Dad had no appointments, meetings, or dinners planned, and the three of us were just “guys on the town”.  We decided to go to a movie.  The new American movie based on Arthur Hailey’s blockbuster “Airport” was playing in English with Chinese subtitles.  The theater had plush purple seats.  Harold and I were the only ones to laugh loudly at a few of the jokes, which we later realized did not translate well into Chinese.  For example, there was one scene on the airplane where an annoying passenger keeps bugging the stewardess for peanuts.  When the stewardess goes to the galley, she says to her colleague, “Nuts to the guy in 2B”.  The other stewardess answers “You said it, sister!”

After the movie as we ambled down the street, Dad characteristically several steps ahead of us, Ha leaned over and said to me “Do you think Dad was listening to the English or reading the Chinese characters?”  I responded indignantly.”Dad has been living in the United States for twenty years! Do you really think that it would be easier to read the Chinese than to listen to the English?” At the next corner we caught up to him and asked him, and he stopped to think. “You know guys, at first I was listening to English, but about halfway through I got tired!  And the Chinese characters just went SHOOOP! and came right into my eyes!”

THE NORELCO SHAVER

Three years ago I had a cardiac arrest, and was hospitalized for six harrowing weeks. I have written about that elsewhere in this space.

I have very few clear memories of this time. Most of the time I was in a light medically-induced Versed (midazolam) coma. But I do have one enduring memory.

I was in and out of delirium, trying to get out of bed despite being attached to multiple lines. I was ripping out my nasogastric N-G tube, my drains, and even my vascular access port for hemodialysis.

One morning I felt the area of my mustache and began to rip out small chunks of skin attached to short hairs. I remember being very pleased with myself, figuring out that I could do this instead of shaving.

I fell back to sleep. I was awoken by the sensation of someone stroking my stubble. When I opened my eyes I saw Ha’s face looking at mine with concern.

He stood up abruptly and left the room. About twenty minutes later he returned with a plastic bag. He took out a box containing a brand new Norelco shaver. He turned it on and gently shaved me.

“Hey Ed, don’t pick your skin anymore, okay? I’m leaving this for you.” He plugged it into its charger and placed it on my bedside table.

Harold Hongju Koh is a famous and important man. He has a crazy-busy life, working to change and heal the world. But for six weeks in the fall of 2018 he put all of his priorities on the back burner in order to heal his brother, me. I will never forget the sight of his loving face looking into mine that September morning.

I am proud to be his brother.

Edward Tongju Koh

May 9, 2021

5/9/2021/1 Presented at Mothers’ Day Zoom memorial for Carol & Anne Mastromauro, May 8, 2021

I spent my last night with Carol watching one of our favorite movies, Baby Boom, by Nancy Meyers & Charles Shyer. It’s a long movie, so we watched up to our favorite part, when Diane Keaton freaks out and screams at her plumber, faints in the Vermont snow, and wakes up in the doctor’s office of Sam Shepard. She pours her heart out to him (“I need sex!!!!”) until she hears a horse whinny and Sam says “Oh, that’s just my next patient. I’m a veterinarian.” She lets loose with another tirade at him, (“I’m spilling my guts to a VET?!!”) then storms out, on the way being scared to death by the snorting of a huge PIG lying on its side in the adjacent stretcher! At that point I closed up my laptop computer and kissed Carol goodnight. When I left she had her eyes closed, with a peaceful, happy smile on her face. That was the last time I saw her alive. 

In the last four years of her life, my wife was afflicted with all manner of pain and humiliation. Through it all, she carried herself with dignity and grace. And in the end she was granted a painless, merciful death.

I recently read Rabbi Harold Kushner’s book When bad things happen to good people, to try to understand this. What he said in his thoughtful 150-page book can be summed up in five words: “S*** happens. Deal with it.” His premise is that bad things are not punishment or God’s will, but unavoidable consequences of the rules of nature, a nature which God created but does not have the power to micromanage.

His recommendation was that people pray to God not to cure their cancer or to take away their suffering, but for the strength to DEAL with their cancer and their suffering.

God gave Carol the strength to save my life three years ago, and then gave ME the strength to stand by Carol through her suffering. She chose to die alone minutes before I arrived at her hospice, but I know that she did not FEEL alone. She had been blessed with the constant company of her family, and especially her treasured granddaughter Ava, for the last month of her life. Her dying wish came true.

And your presence both five days after her death and now four months after her death is an ongoing message to Carol that she is deeply loved, and will never be forgotten.

October 3, 2022 (written in Koh Family Google Group Gmail thread)

Thanks, Emily for your thoughtfulness in remembering Carol’s 74th birthday. Sheila and I are in Tuscaloosa now celebrating Carol with David and Amanda’s family and meeting Serena for the first time!
Carol is dancing with joy to see her granddaughters thriving!

Without trying to, Carol became part of the heart and soul of the extended Koh family, just because of who she was. She maintained a loving and supportive relationship with Richie. Every year on October 2nd she called him to wish him a happy birthday, and he wished her one in return. She never judged him. He always appreciated that.

When I suffered my near-death experience four years ago she summoned our extended family together. As a result, David and Jonny developed a strong and lasting kinship with their cousins which they treasure to this day. And the love and support of all of you helped me to pull through. Again, thank you.

Carol’s love was powerful and pervasive, and we were all enriched by it. Her love helped me to grow and prosper in the face of my miserable illness. God burdened me with this affliction, but also sent me a soulmate who made it bearable, and allowed me to continue to experience joy.

At the end, I learned to love her more deeply than I had ever loved before. Her cancer robbed us of years, but helped us to appreciate each minute that we had together.

I pray that I can continue to live this lesson.
Please remember her today and always.

Uncle Eddie

5.9.2021.1

Howie and I were walking on the New Haven Green one sunny day. He was a premed student, and I was a sophomore chemistry major.

We noticed a small crowd of people on the other side of the Green, and went over to see what was going on. There was a middle-aged guy on the ground twitching. Everyone was transfixed.

Howie very calmly bent down and put his hand on the man’s neck, feeling for his pulse. Then he just stayed there for a minute watching him. The man gradually stopped twitching. “Has anyone called an ambulance?” Howie asked. There was one on the way. We left.

Sometime after that I received an invitation to apply to an accelerated medical school program. After much uncertainty, I ended up starting medical school at the beginning of my senior year, on the same day that Howie started medical school at Yale.

I had never wanted to become a doctor. However, after I did commit to medical school, I decided that I wanted to be able to save the life of someone who had collapsed on the street. I therefore became an anesthesiologist. Howie became an expert in cancer prevention and public health.

What impressed me the most about my brother that day was not anything that he did, but his stance and his demeanor. Even as a premed student, Howie was already a doctor. He was ready to deal with whatever problem arose, and his sense of calm radiated out to the entire group of people there, and to his patient. He inspired me to become a doctor.

I told Howie this story last year. He said simply “Oh yeah, I didn’t really do anything” in his typical self-effacing manner.

So modesty is another quality that he is modeling, a good lesson for me.