How to Lose and Find Your Sh*t

Forty eight hours before I receive this card, I start to lose my shit. It's 2AM, December 24th and I take Gerardo back to the ER. Again. It's been less than a week since his last hospitalization, where his stabilization outpaces UCLA's bed availability, resulting in a discharge where we are back at home, with commutes to UCLA medical appointments on calendar and on the horizon for 2022. 

By 6PM, Gerardo is finally in a bed and I along with all other hospital visitors are kicked out and I decide to not return home but to check myself into a Hilton. I need to enter a room where nothing about it is medical. And before I do, I need to find a table for one where I can order an entree from a menu that I eat while being seated the whole time. And after the meal, I need to dive into a bed with crisp sheets and before I fall asleep, to allow myself to break apart into tiny pieces as I sob into a pillow. I don't shower. I fall asleep in the same clothes. 

I text with friends to express my anger about everything. I hate everything and everyone and most of all I need the pressure of Christmas to be over.

I wake up and go to my local Starbucks on Main Street where the manager and baristas know me and my family's situation and have been nothing but classy and comforting to me. As I approach the counter to order my usual (Hot Venti Americano with cream on the side), my favorite barista is two steps ahead of me because he's seen me from afar and likely surmised that I've had a rough night. He has already made me my usual and comes to give it to me in the middle of the line and says it's on the house. The Americano gets mixed with tears that I chug down. Salty good.

Gerardo is discharged that night. Christmas is almost over, thank God. And as we carefully walk up the two stairs to enter the house, I am reminded that I need to contact John, our handy guy, to build us a ramp so Gerardo doesn't have to climb up and down the two steps every time. Two steps don't sound like much until they become much. I see the holiday wreath that my talented friend Dori has made and quietly hung on my door, along with black and cream ribbon that I had admired on her neck some weeks ago left for me with a note of friendship.

Sleep happens. Wake happens. I start tidying the house, and see this card atop a gift bag that I can tell Monica will be giving me later in the day. I weep again, not because I feel myself breaking apart but because I feel myself gathering my parts back together. And I say to myself what Mr. Bergstrom has reminded Lisa Simpson to do in times of need, which is to remember who I am. I shower, tie the ribbon around my neck and get to the business of getting our family to exchange the love.

Paying Attention to Someone IS Love

 

After reading my last post about Gerardo's hospitalization, one of my friends wrote this to me:

The word "gaze" will always mean so much more to me. I have a reminder posted above my desk from a quote I read a while back. "Paying attention to someone is love." I find that paying attention to my grandkids is what they want most. Their simple delight when they see we are watching feels like love back. The way you, Monica and Andrew and the staff intently paid attention was the love Gerardo needed to hang in there against very tough odds. Gerardo circled love back with his gaze and yet conserved his needed energy. I look forward to hearing what the days ahead bring. There are so many of us hoping for a transplant soon.

Love,

Crisynda

Attention IS love. It is also currency. It is the most valuable resource that I possess in this attention-driven economy where through the addictive tools of technology, my attention is pulled in directions that I don't even realize exist, all clamoring for my clicks, likes, and dollars. Crisynda reminds me that attention outside the economic realm has the power to make a person feel loved and seen, more than any purchased material.

This point is one that I have been making to my students for the past four years teaching at UC Irvine, with the help of Jenny Odell's book, How to Do Nothing.

I am fortunate to have a life where I don't teach more than one class at a time, and that my class size is small, usually no more than 40 students at a time. This allows me the capacity to give tailored feedback on the papers that I ask students to write on a weekly basis. It allows me to meet with students individually outside of class. It allows me to be completely present during lectures and to give each student concentrated attention. Students have said to me that they are not used to the attention. They are used to larger class sizes and instructors with good intentions spread so thinly that usually, the final grade is the only feedback that they get.

When I used to be a social worker for child protective services, my caseload was through the roof, which has been and continues to be the case for the profession famous for the burn-out factor. For most social workers, there is hardly any time to give proper attention to the children who are supposed to be shepherded because they are expected to shepherd so many.

When I used to be editor-in-chief within the magazine publishing industry, my workload was also through the roof with never enough time to give proper attention to any single magazine because there were so many to produce.

Regardless of the profession, it seems that people in charge try to invent new interventions to improve systems. Whether it's teaching, social work, publishing, or the work of being a human, I think the intervention that is most effective is when we can organize ourselves so that we are not spread so thinly. 

Because isn't the intervention that really makes sense a smaller class size? A smaller caseload? Fewer magazines? Less hustle? Less pretending?

Isn't the work of being human found not in the shallow glance of the clamor but the deep gaze of the calm? Isn't that love?

Merry Christmas 2021

 

It's been five months since Gerardo was accepted into UCLA's liver transplant program and I write this post as an update to my original post.

Gerardo and I have spent most of December at the UCI hospital. Though his MELD score doesn't seem to rise above 21 (the same score that he entered the program with in July), other troubles hover over us. During this hospitalization, he experienced a sudden and harrowing episode of acute cognitive failure related to advanced hepatic encephalopathy. Gerardo's brain was straddling this world and a world beyond this one. It was exhausting for me to watch and exhausting for Gerardo to experience. As he was mostly in another world, I sat bedside during visiting hours talking to him about the past, present and future in order to try and cajole him back to this world. When I recalled the day when Monica was born and the day when Andrew was born, Gerardo's face lit up. There were moments when he was able to hold my gaze for a few seconds and at the end of visiting hours when I tried to say goodbye, he would say "Jenny, wait!" It was the same when either Monica or Andrew visited. He held their gaze and when either of them got ready to leave, he non-verbally expressed a deep longing for them to stay. It was heartbreaking and heartwarming at the same time.

During one of the more desperate bedside moments, I was crying uncontrollably as I asked Gerardo for a favor: "Gerardo, I am asking you to do just one favor for me. You have to hang onto any little kernel of cognition that your brain can latch onto and you have to build upon that kernel and come back. You have to come back."

Yesterday, after days of cognitive failure and assorted interventions by teams of medical experts, he was given a sleep aid, causing him to sleep for a solid four hours. As he was waking, Gerardo started to engage and converse. It was mostly in Spanish (his first language), laced with songs, peppered with English and fueled with emotion. The attending nurses and I literally jumped for joy as we witnessed Gerardo coming back to this world. The Comeback Kid. When I asked Gerardo whether he remembers any of my words or the words of Monica and Andrew during the time when his brain was leaving us, he said "I remember everything. I remember the favor you asked of me."

As of this writing, UCI Medical Center is working to facilitate a transfer of Gerardo from UCI to UCLA so that the liver transplant specialists at UCLA can potentially broaden the scope of care for Gerardo. It may take a few days before a bed opens up. The thing that could change everything with this plan is if Gerardo stabilizes enough to be discharged back home before a bed opens up at UCLA. A hospital-to hospital transfer doesn't correlate to prioritization of being matched with an organ but the idea of being in closer proximity to the team that conducts transplants feels hopeful. 

When I texted this update to Mike (my friend from junior high & high school) who lives in LA, his response was simple and immediate: "I have a bed ready for you." Reading those words of solid friendship made me shed some beautiful tears. There are other gestures of warmth and love and support and caring from my friends that make me feel gratitude, even in the context of uncertainty. 

So for the rest of December I may be visiting Gerardo at UCLA and either taking up Mike's offer to use his extra bed, or checking into a room at Luskin Center on campus. Or I may be continuing to commute with Gerardo to UCLA appointments from our home. I wonder with hope what kind of update I'll be writing in The New Year. 

For now, please accept a heartfelt Merry Christmas on behalf of Gerardo and me as we wish for you the opportunity to hold beautiful gazes, and to feel deeply, the presence of loved ones. 

Love,

Jenny

PS: The gratitude I feel for all of the doctors and nurses I've met throughout this journey is higher than the highest mountain. I am grateful that these individuals applied their God-given talent to complete medical school or nursing school, studied hard, worked hard, and that every day, they choose to dispense complicated medical interventions while maximizing patient dignity as their day-to-day work. 

MINOR FEELINGS by Cathy Park Hong

There is a passage in Minor Feelings by Cathy Park Hong where she explains to her friend Erin that "it's a problem how Asians are so private about their own traumas, you know, which is why no one ever thinks we suffer any injustices. They think we're just these robots."

The passage reminds me of one of my deepest traumas that occurred during my senior year in high school in Bakersfield. It was toward the end of the school year and I was sitting in my usual seat in the very back of Chemistry class with our teacher Mr. En trying to keep our restlessness on a low simmer as we were waiting for class to end, the year to end, and something new to begin. During one such afternoon, Bouncy Cheerleader Em was playfully teasing Mr. En asking him "Mr. En, will you remember us after we are gone?" 

To which Mr. En said "Bouncy Em, there are some people who will be remembered, like you. And then there are some people who will never be remembered and always forgotten, like ... like ..."

As Mr. En was surveying the classroom to select the student that he would name as an example of the forgettable, my stomach sank as I prayed silently and fervently: "Please God, please don't let him say my name. Please God, please make the minute hand go to seven so it can become 3:07 so the bell can ring and I can leave. Please."

"Like ... like ... Jenny Doh. People like Jenny Doh will be forgotten."

From the time that Mr. En uttered those words until it became 3:07, everything seemed to go in slow motion. My affect flattened but everyone else seemed to be just fine. Nothing about that moment horrified anyone else but me. I wanted to die and I wanted to appear perfectly fine all at the same time. I kept that trauma private and allowed people to think that my robotic self hadn't been hurt. 

Like most Korean Americans, I was raised with a belief that it is a virtue to quietly endure. In Korean culture, the word is 차마 (pronounced chamah). Where no matter how deep it hurts, we endure it. In a scene where her artist friend Helen experiences deep trauma, Park Hong wonders whether Helen is going to kill herself and then remembers that stronger than Helen's "will to die was her will to endure" and that "This was the most Korean trait about her, her intense desire to die and survive at the same time."

Other related Korean virtues include 고생 (pronounced gohseng) which means to suffer, and the ability to repay 신세 (pronounced shinseh) which means indebtedness. It is no wonder that to endure, to suffer, and to repay debt are the virtuous cornerstones of the Korean people. Historically, we are a people who have been occupied, divided, and underestimated. And quietly, we have endured, suffered, and worked diligently to repay real and perceived indebtedness.

Park Hong describes the dynamic of how language of the dominant and the language of the dominated develop differently by saying that "English tuned an experience that should be in the minor key to a major key; there was an intimacy and melancholy in Korean that were lost when I wrote in English." For me, it's not just in the written word, but in the spoken word, where in English, I find more know-it-alls who for whatever reason wake up every morning and decide that it is their job to shout out answers to questions that no one has asked of them. Because they know it all. All the time and always in the hyper major key. 

But put them in a room with a Mr. En who publicly characterizes a quiet Korean American girl as forgettable and they won't say boo, because as Park Hong cites Robin Bernstein's book Racial Innocence, "Innocence is not just an 'absence of knowledge' but 'an active state of repelling knowledge,' embroiled in the statement 'Well, I don't see race," where I eclipses the seeing." 

Says Park Hong, "I sometimes avoid reading a news story when the victim is Asian because I don't want to pay attention to the fact that no one else is paying attention. I don't want to care that no one else cares because I don't want to be left stranded in my rage."

Maybe that's why we Koreans are frequently silent. Because in many ways, forgetting Mr. En through silence is easier than remembering him and all the inattentive witnesses through rage. But says Park Hong, "The problem with silence is that it can't speak up and say why it's silent. And so silence collects, becomes amplified, takes on a life outside our intentions, in that silence can get misread as indifference, or avoidance, or even shame, and eventually this silence passes over into forgetting."

The Horror and Hope of Squid Game

 

One of the most memorable words that come out of player 067's mouth from Squid Game is: "난 사람 안 믿어" which translates to “I don’t trust people.” She reflects the rigidity that exists within a people that have historically been occupied and stripped of dignity. As Cathy Hong Park effectively summarizes in her book Minor Feelings, that Koreans are a people who have always been on the run as we "first went to Manchuria to escape the Japanese occupation, then to Seoul to escape the Soviet invasion, then to Busan to flee North Koreans, and finally to the United States to escape thew South Korean dictatorship. And in this 21st century, we know that life in North Korea remains a nightmare, causing people who choose the potential terror that will be theirs if caught defecting, to try anyway.  

Player 067 and her family are one of the families that try anyway. Player 067 makes it to Seoul but along the way, her father is killed, her brother taken into an orphanage, and her mother stranded in North Korea.

She doesn't trust people and she speaks volumes through her stoic silence. But she is intent on reuniting with the people she loves: her mom and brother. Her reasons to live. And as bloody and violent as Squid Game is, we suspect 067 has lived through a brand of horror already. 

In a later episode, when male protagonist 456 is about to kill another player, 067 says to him: "그러지 마. 그런 사람 아니 잖아" which translates to: “Don’t do that. You’re not that kind of person.” It's a pivotal moment because even though 067 has gone on record early and often to profess her distrust of people, we learn through this scene that she knows that some people can be trusted. Some people, when sobered up, know right from wrong and choose right.

The piercing gaze of 067, coupled with her pained silence are the kind that is familiar to me. It is undeniably Korean. Cathy Park Hong knows about this silence as she writes: "But I grew up in a culture where to speak of pain would not only retraumatize me but traumatize everyone I love, as if words are not a cure but a poison that will infect others."

It could be called ironic that 067's name is 새벽 (pronounced Sae Byeok) which translated means "dawn" — the first appearance of light before sunrise. Also known as hope.

 

Things We Lost to the Water by Eric Nguyen

 

NEAR-DEATH

I have a memory of when I was a little girl in Korea, maybe when I was four or five years old. My family joined other families to vacation at a beach and though my memory of that time is foggy, there is a scene from that vacation that is horrifyingly vivid. That's when I stepped into the ocean by myself and nearly drowned. There is a photo of my parents pulling me out, with Dad holding my hand, Mom holding my other hand. My face looked contorted as I was managing many emotions including fear, anger, gratitude, all at the same time. Because I was so young I don't think I felt embarrassment. I knew deep inside that I had almost died.

I have another memory of when I was older, relocated in America. Maybe third or fourth grade. I was in a pool with my brothers and family friends. I still didn't know how to swim and there was a split second where I stepped one step too far and the bottom of the pool disappeared and I was drowning. I panicked and said a quiet water-muted "h lp" with flailing limbs. No one heard me. Thankfully, my flailing shifted me enough for me to feel the bottom of the pool again and I was ok. I stepped out of the pool and my much more self-conscious ego pretended that my near-death experience hadn't happened. 

THE BOAT
Things we Lost to the Water by Eric Nguyen is about roots, relocation, losses and near-losses with water always close by. Water is close by when in 1979, pregnant Huong boards a boat with her little son Tuan to escape the Viet Cong. The plan had been for her husband Cong to also join the boat but at the last minute, Cong doesn't board. The memory of whether the inclement weather and chaos of the moment prevented him from boarding or whether he simply chose to stay behind remains unclear. This murkiness causes Huong to create a false narrative to have her now two sons Tuan and Ben (born after their relocation to America) believe that Cong didn't choose to be somewhere other than with his family.

The trauma of relocation affects Huong, Tuan, and Ben differently. It's hard to be uprooted. Even harder to grow new roots. And for most of the book, we see these three souls limp along as they navigate their sapling selves in New Orleans.

HURRICANE
When Hurricane Katrina hits New Orleans in 2005, there are harrowing scenes of Huong frantically searching for higher ground while also trying to locate Tuan and Ben as the town is literally and speedily drowning. In such life-threatening moments, what is a good mother to do? Is it to make a decision to take a step to ensure her survival? Or is it to take the opposite step to search for her children and potentially risk her life? 

In the hurricane, Ben and his partner find unexpected refuge in the home of an elderly man. They knock on the door of his still standing house and he lets them in with a smile and explains that "When they announced the evacuation, I couldn't leave ... I just couldn't! I have roots here."  

FILTHY BOHEMIANS
Several scenes before the hurricane, we find academically gifted Ben living in Paris, France as he pursues the romanticized notion of the Bohemian life that he read about in Henri Murger's book: Scenes from the Life of Bohemia. It's a voluntary and temporary relocation for Ben and he learns quickly and hilariously that the idealized Bohemians of Murger and real life messy and filthy house mate Bohemians in his Paris apartment are radically different.  

SOMEWHERE
Back in the hurricane, relocation happens moment by moment. During a scene where Huong is catching her breath and not drowning, she pleads to a stranger that she has two sons. Where, she isn't sure. But she declares "They're somewhere. They're somewhere."

The somewhere where we are at at any given moment may come with gnarly roots. The kind that Ben describes as taking "a lifetime to make a place lived in." The kind that might prevent a person from evacuating a storm or a person from boarding a boat to escape political oppression in one's homeland, or a plane for the land of opportunity. Because, the person might wonder, how can I be sure that out there, with no roots, I won't drown? 

Realizing & Revising

 

DAVE CHAPELLE
Once in a rare while, I find myself in the company of white people who use the N-word as if it's no big deal. They are also usually quick to reveal their love of people like Dave Chapelle to perhaps establish some kind of street cred—like they're using the word not because they're freaks but because they're cool, progressive, and free. And I say to them: "STFU. You're not Dave Chapelle. And you're the opposite of cool." 

Some might argue I am the unreasonable in such scenes, imposing restrictions on people's right to free speech. After all, even the couhl should be free to say whatever they want, whenever they want.

ON FREEDOM
In the first chapter of On Freedom by Maggie Nelson, I learn about a classroom scene with instructor Catherine Opie at UCLA where a student criticizes the work of another, accusing it of being colonialist. The criticized student: 

"appears dejected, and mumbles from the corner, 'Damned if I do, damned if I don't.' Opie then hectors him kindly: 'Stand up for your work! ... Open it up! Don't shut it down, man.' Opie is not counseling the student to become a rigid, narcissistic jerk unable to absorb any deconolonizing critique. She is just reminding him that if you truly think your art is worth it, you've got to be willing to stand beside it and up for it, rather than slink into the all-too-familiar postures of woundedness, defensiveness, paralysis, or retaliatory aggression."

LOUIS CK
I just bought tickets to go see Louis CK in a few weeks at Long Beach. Yes, he's touring again. And yes, I can't wait to hear what the first words out of his mouth will be, after this long stretch of silence. Not that he's been COMPLETELY silent. I've kept up with his occasional funny missives and endearing podcast with his French girlfriend that he released for people who have stayed on his mailing list (like me).

Some people express disdain for my continued interest in Louis. And the point I try to make is that maybe he has realized that in this day and age, taking his penis out in the company of others is not ok. And that we ought to allow one another the opportunity and space to realize things.

THE GOLDEN RULE
The other point I try to make is made by referencing The Art of Cruelty, also by Maggie Nelson, where she cites philosopher and composer John Cage who argues against The Golden Rule: "I think the Golden Rule, which is often thought of as the center, really, of Christianity, is a mistake: Do unto others as you would be done by. 'I think this is a mistaken thought. We should do unto others as THEY would be done by."

In other words, who is anybody to say that everybody should be treated or behave a certain way based on anybody's preferences? At the grocery store, the office, the theater, and of course in bed. What is the Golden Rule in bed? Slow and gentle? Or rough and tumble?

PROFESSOR OPIE
I think what Professor Opie is saying to the criticized is to not cower away from robust debate. Take the criticism and potentially revise OR push back with intellectual honesty as you influence a critical mass to see the genius in your masterpiece.  

Like Sarah Silverman, I wouldn't have been upset if I had been in that room with Louis. But because some did get upset, it means that it's upsetting to some. And if Professor Opie would have been in that room, she might have told Louis to fight for his right to do whatever he wants with his penis OR she might have counseled him to make realizations about the times and The Golden Rule. And then to revise. 

Some will call it a miracle. I will call it science.

Did you know that UCLA Health conducts approximately 440 liver transplants every year? That's more than one transplant a day. Did you know that nationally, there are more than 14,000 people at any given time, on a waiting list hoping to be matched with a new liver from an organ donor? There are many other mind-blowing facts about organ transplants that you can find out about online, if you're interested. 

Gerardo and I have been spending much time at UCLA Health as he has had to undergo numerous tests required before he is either accepted or rejected to the UCLA liver transplant program. The tests are what inform the medical team whether the rest of his body is ready to receive a new organ. (His failing liver is related not to alcohol, but to bile duct cancer that he had removed in 2013.)

Today, July 16th, has been on calendar for some time, as the date when our caseworker would present his case to the UCLA medical board to determine whether he would become accepted. I'm more than happy, jubilant really, to report that UCLA Health has officially accepted him into the program. For that reason, we are celebrating and feeling grateful for the team of UCLA doctors, nurses, and administrators who have provided and will continue to provide us with the highest of care. 

There are many more mountains ahead of us, including the most daunting one which is that his liver needs to become much worse (as measured by the MELD score) before he moves up on the priority list and then into surgery, followed by recovery. As his full-time caregiver (and part-time everything else), I shudder to think that he will suffer more as he moves up to the top spot on the waiting list. He has suffered so much already.

It's better not to fixate on that too much as we take one moment at a time. One breath in at a time. One breath out at a time.  

I like to imagine surmounting every mountain and hoping that maybe one or two years from now, he will have a new liver, with no more days of acute suffering, with the coffee brewing, the sun rising, the trees rustling, and the birds chirping. That's my hope. I suppose if all this comes into fruition many will call the transplant a miracle. But I will call it science. And I'll give credit to the brilliant doctors and scientists who instead of squandering their God-given talent, they applied it to study and practice their specialties in medicine for the benefit of humanity, no matter the outcome.

Per learning about organ transplants, I've decided to become an organ donor when it's my time to leave the earth. It's been freeing to realize that burial and cremation aren't the only two options at the end of life. As an organ donor, my parts could help many humans experience more life and less suffering. It's important to note that more important than checking the box at the DMV or registering at assorted donor registries, the most important way to be a donor is to make my family and all of my doctors know that that is my intent and desire. 

I will be providing periodic updates here as we continue on this journey. And as I meditate on the wisdom of I Thessalonians 5:18, I shall IN all circumstances, give thanks.

The Reading Lab: Free Speech & Activism

 

When we think of the concept of freedom, do we value only the freedom TO?
To speak.
To think.
To act.

Or do we also value the freedom FROM?
Freedom from harassment.
Freedom from intimidation.
Freedom from violence. (The kind that the Asian American community has been experiencing a lot of lately and other moments in history.)

When we think of freedom, is it something that belongs to an individual or also to a community?

When we start to notice harassment and demand that it stop are we cancelling the harasser or is the harasser feigning censorship because they’ve not been kept accountable before?

We will pursue these questions and more in my new online class in collaboration with Professor Lonce Bailey, titled The Reading Lab: Free Speech & Activism. Class begins April 9th. Details and enrollment info can be found here.

Everyone welcome.

THE WARMTH OF OTHER SUNS by Isabel Wilkerson

 

Approximately from 1915 to 1970, the servant class of America took action to leave the southern states of the United States as they embarked on a journey that would land them in northern and western states. About six million Black Americans took this action not by first asking for permission or announcing that they would. This historical truth of The Great Migration comes to life as Isabel Wilkerson, author of THE WARMTH OF OTHER SUNS, focuses on the stories of three specific black Americans who took this action:

• Ida Mae Brandon Gladney took action to leave Mississippi and settle in Chicago
• George Swanson Starling took action to leave Florida and settle in New York
• Robert Joseph Pershing Foster took action to leave Louisiana and settle in Los Angeles. 

The research that Wilkerson conducts in order to present the pushes and the pulls associated with why blacks left the south is epic.

The big push to leave had everything to do with the indignity of living under Jim Crow laws that protected the practices of white people -- from segregation to abusive work environments, to lynchings. Pershing  Foster knew firsthand, about the indignity of living under Jim Crow. A man who would eventually become a medical doctor with a thriving practice in Los Angeles knew before the migration while growing up in Louisiana how he had to swallow his rage in order to survive Jim Crow. The need to do bide his time, and to do whatever it took to survive the oppressive eye of his white bosses ... in the streets, in the fields, in his dreams:

"Sometimes" he said, "you have to stoop to conquer" (page 117).

The big pull of the migration contained the stories of more enlightened northern and western states, where Jim Crow was reputed to be less overt and dignity for blacks reputed to be more attainable. Wilkerson presents fascinating research that documents migrants as having an unparalleled will to survive. Though they didn't cross bodies of water or actual borders separating nations, the hardships they endured by making this move caused them to do whatever it took to survive -- including working longer hours, taking multiple jobs, and taking jobs that others didn't want.

As an immigrant myself, I get that to my bones. 

And I get the value of:

• delaying gratification
• swallowing the rage, and yes, 
• stooping to conquer.

Word for 2021 :: BODY

It's been a brutal year for bodies everywhere. For my partner, the brutality has been related to the ongoing ways in which bile duct cancer survival becomes compounded by new complications, new challenges, new crises. 

"I'll pray for his complete recovery and healing" is spoken to me with good intention but I am left speechless when such words come at me because there is no such thing as complete recovery and healing from this. There is love and support and awareness and care that can be given so that extended survival can be had with as much joy, intelligence and dignity as possible. 

Other words also leave me speechless. And I've learned how to preemptively silence them when I feel them coming my way by explaining to the almost offender that it is my honor. It is my privilege to be his life partner and that I get to help maximize his day-to-day hope and dignity as we take it one day at a time and manage all interventions. It is a role that gives me profound purpose.

As I relish in the purpose of supporting the survival of someone else's body, I find a depth of purpose as I continue caring for mine. Every morning I wake up and exercise (as I have been doing for the last couple of decades) either by myself or with my boxing coaches (Tee and Corey) or my strength/nutrition coach, Victor, who reminds me that the body doesn't care how it looks. It cares about surviving. My ego appreciates that the byproduct of how well I nourish my body with clean foods and how well I train it to be strong is that it ends up looking great. 

I like that. Leading with a pursuit of survival and allowing my ego to enjoy the byproducts of that main pursuit.