First Easter without Mom.
I went to sleep early on Saturday night, and woke up early this morning, around 5:30AM, so as to go perform my own little sunrise ceremony. I was counting on Fort Hunt Park being open by 6:30 (sunrise was closer to 6:50), and as it turned out, the park was quite open. Not only that, but as I drove past the entrance, I saw that one parking lot was already full of worshippers who had taken over the park's main pavilion-- even lighting its large stone hearth-- for an Easter sunrise service.
I wasn't interested in that service, or even in that parking lot. Instead, I drove down to one of the parking lots at which we used to stop so that Mom could get out and have a walk. We took Mom walking as often as we could during her illness; she'd had good days and bad days, depending on the state of her brain: too much intracranial edema meant that she would stumble and fall, leaving it up to us, usually two of us, to catch her in time.
Today's dawn was quiet. I got out of the car, stared around at the slowly lightening park, and began to walk the route we normally took with Mom. My hand reached out to grasp her now-invisible hand, and for a moment I was able to conjure Mom up, and feel what it was like to walk slowly across the asphalt with her at my side. There were brief tears, but this morning wasn't as bad as several weeks ago, when I came back to this park for the first time since Mom's death. On that day, I started walking and suddenly stopped: Mom's absence was heartbreakingly palpable. Instead of walking, I found myself leaning against the pillar of one of the smaller pavilions, sobbing at the cruel pain of memory, and it wasn't until I'd finished crying that I was able to pull myself together and walk our familiar path.
This morning, as I noted, the tears were brief. I walked one path, drove the car around the perimeter road a bit, parked at our other traditional parking lot, and walked that second path as well. Together, the two paths were about three-quarters of a mile in length: the measure of a cancer-ridden life.
When I finished the second walk, I bypassed the car and sat myself on a picnic table sheltered by a pavilion, facing the rising sun. The pavilion's heavy wooden structure, and the way in which it framed the sun, evoked the ambience of a temple. I sat ch'am-seon (zazen) for a hundred slow breaths, and right as I expelled my hundredth breath, I suddenly heard the sound of singing from the Christian group across the way. I smiled; it was one of those happy coincidences that might lead the more superstitious among us to see the work of Providence.
I'm not a literal theist; haven't been for years. I don't believe in Providence, or a literal resurrection, or miracles, or the power of prayer. As far as I'm concerned, what happened to Mom was unfair, and made no ultimate sense. If there is a God, then Mom's brain cancer was evidence of God's cruelty, not his majesty or mercy. Her cancer, glioblastoma multiforme, has an unknown cause and no known cure: it arose through unfathomable but natural means, and Mom died a death that was the natural consequence of such a cancer's progression. No one recovers from GBM, and Mom's cancer was even more aggressive than most GBM cases are. We did what we could for nearly nine months, struggling to keep her as comfortable as possible, all the while knowing that she would eventually die. I spent some of that time hoping that she might be made well enough to live to 70; that was a vain hope. Some of Mom's friends and relatives persisted in denial, thinking that somehow she might benefit from a cure. I suppose it's only natural to cling to hope, but hope often clouds one's perception of reality.
We now begin the long trudge past a series of temporal milestones. Today marks our first Easter without Mom. Two days from now, Dad endures his first wedding anniversary without his wife; it would have been their 43rd. On May 4th, we face Mom's birthday; she would have been 67. By modern American standards, 67 is still young. My aunt in Texas, Mom's big sister and her senior by twelve years, has repeatedly lamented the injustice of Mom's passing away first. I'd rather that both Mom and my aunt lived forever, but I understand the spirit of my aunt's lament. Mom's death wasn't part of some ridiculous cosmic plan or "salvation history"; it simply happened, and it was senseless, tragic, and ignoble. And yes: it was unfair.
Combatting that senselessness, tragedy, and ignobility is our duty: the duty of those who remain. Mom would want to know that her three sons were living happy and fulfilling lives, that her husband was enjoying retirement and a measure of inner peace. It's up to us to be true to what Mom would have wanted, and her memory must now serve as our guide. I don't believe in souls or the afterlife, but I think there's a meaningful sense in which Mom continues to be with us. Her existence created ripples that affected everyone around her-- family, friends, coworkers, and relatives. Those ripples will continue outward, changing form, but always supplying a loving impetus to our nobler thoughts and actions.
In the meantime, though, Mom's loss is still fresh in our hearts. We miss her. Desperately.
A few minutes after Mom died on January 6, we each took a moment to say something to her before leaving the ICU. I don't know what Dad or my brothers said, but for my part, I told Mom that I loved her, and that she shouldn't worry: we'd be all right. It's up to us, now, not to let those words become a lie.
I love you, Mom. I love you.
Sunday, April 4, 2010
First Easter without Mom.
Sunday, January 31, 2010
I had said, earlier, that the previous post was to be the next-to-last post for this blog, because I would be writing an epilogue and then leaving it at that. However, I began to realize that doing so would have meant breaking several promises. One promise, from early in this blog's existence, stands out: the promised transcription of several recorded dialogues that occurred during my 600-mile trek across the Pacific Northwest in 2008. For one reason or another, I've been unable to sit down for a straight block of time to work on transcription. During the first few months I was back home from the walk, the main reason was renovation: the house was being torn up and rebuilt, which made lengthy sessions on the computer difficult. From the spring of 2009 onward, I was more preoccupied by Mom's cancer than by any need to finish those transcriptions, and while I did write some lengthy blog posts during that time, they were all, in some way, about Mom.
But now I'm at a point that I foresaw during Mom's illness: Mom is gone and I suddenly find myself with plenty of free time. Here's the plan, then: I'll write my epilogue, but at the end of the epilogue, I'll append updates that pertain only to transcribed dialogues. The dialogues themselves will be backdated so as to be filed away in the murky depths of the blog archives, i.e., the epilogue will remain the blog's final post. For those who have no idea what I'm talking about, I strongly recommend that you peruse my sidebar (many folks who visit blogs never bother looking at sidebars, which is a shame). Near the top is a section titled "Interactions," which contains links to records of some of the encounters I had during my walk. Those exchanges ought to give you, Dear Reader, an idea of what's coming.
So the basic imperative remains: stop by every once in a while, and check to see whether I've added new links to my epilogue, once it's written. No definite timeline; I don't plan to box myself in with more promises I might not be able to keep.
As always: thank you.
Monday, January 25, 2010
As it turns out, Flickr isn't all that friendly if you're trying to make a huge slide show. The site only allows 200 photos to be visible if you have only the free account; to be able to see more photos, you have to pay for the upgrade to a "professional" account, at which point you have nearly unlimited storage capacity. This is no different from what Photobucket does, and since I already have Photobucket as my image upload service, I see no reason to start paying for an expanded Flickr service.
So instead of using Flickr, I'm using Photobucket as the base for all my slides. What follows is pretty much the same slide show that was running during the memorial reception. A few major differences, though:
1. It appears that I'm unable to control the time intervals at which the slides change.
2. This presentation contains a few extra pictures, but not a significant number. I'd guess that there are probably fewer than ten extra shots here.
3. The slides cannot be larger than 640 x 480 pixels.
4. As a result, all the slides you see have been drastically reduced in size.
5. Each Photobucket slide show has a limit of 100 slides, which means I've had to break up the "2000s" chapter into smaller sections. The final chapter, which covers Mom's cancer, originally had 103 slides in it. To meet the slide limit requirement, I simply subtracted 3 slides instead of creating yet another slide show.
6. The slide shows all appear below, and they will all run at the same time.
Without further ado, then--
Mom in the 1960s and 1970s:
Mom in the 1980s:
Mom in the 1990s:
Mom in the 2000s, before her cancer (3 slide shows due to the number of slides):
And finally, Mom during the cancer period (4/16/09 - 1/6/10):
All that remains for this blog is the epilogue-- my coda after writing for nine months about life at the end of Mom's life. I can't say when I'll write it. Maybe tomorrow, maybe six months from now, maybe 5 years from now. Whether the epilogue will be long or short, sentimental or humorous, prose or poetry-- I have no idea. So check back every now and again. You've come this far.
In the meantime, thanks for stopping by. I appreciate your readership.
Saturday, January 23, 2010
It's been a week since Mom's memorial service, which is, I suppose, a long enough delay. I've been meaning to write this entry since last Saturday, but haven't felt much desire to do anything, let alone write another post. The memorial marked a crescendo of sorts; the week before it was one long buildup to the ceremony itself. By "ceremony," I suppose I mean both the service and the reception that followed. Each event was, after all, part of a larger, ritualistic whole.
Our family had been to the church for a few hours the previous day (Friday, January 15) to consult with Pastor Jeri and Pastor Kim about the nitty-gritty details of the ceremony to come. Quite unsurprisingly, we discovered that we were in the best of hands: Jeri was ready to finalize and print out the church bulletins, and ladies were already bustling about the Christian Education Building, setting up the reception area. There was little to do on Friday but set up easels, position Mom's picture at the front of the sanctuary, drop the guest ledger and 3-ring binder in their respective places, and make sure the digital projector was working. My PowerPoint slide show wasn't finished on Friday afternoon; I would end up spending the entire night working on it. I had been laboring over it all week, but in accordance with Murphy's Law, work managed to pile up at the very end, despite the head start. In such cases, when I face a massive time crunch, sleep is the first thing to go. That's been true for me since college.
On Saturday, I arrived at church around 8:30AM after only an hour and a half of sleep. The slide show was finished, but I had sacrificed several dozen pictures from both the 1990s and the 2000s. Some of those pictures had been given to us by different friends-- folks who had probably hoped to see their contributions displayed in some form or other. Despite the omissions, quite a few of the digital pictures did make it into the slide presentation, but none were shown on the easels. Still, the slide show chapter devoted to the 1990s was severely truncated. I simply didn't have time to finish.
Pastor Jeri had already set up her computer for my use in the CE Building. All I had to do was plug in my thumb drive, access the slide show, then start it running. I had set the show to change pictures at five-second intervals, and had also programmed the entire sequence to loop over and over again. With well over 300 pictures in the tribute, the slide show was about 30 minutes long. I stood for a few minutes and watched images of Mom from the 1960s and 70s; when the show rolled into the 1980s, I left the CE Building and went back to the sanctuary, where there wasn't much for me to do.
Several other folks arrived early: my father and brothers, my Texan relatives, Mrs. Kopf-Perry and her two children, and Sean's friend William McDaniel, who was to play piano during the service. Mrs. Kopf-Perry performed the mike check while I moved to the back of the sanctuary, near the narthex; she sounded loud and clear to me. I hugged my cousins and uncle and several aunts; most of them had flown in from Texas on Friday, and our family, because we were so busy, hadn't even had the chance to see them when they arrived. At first, despite the huge number of empty pews, no one would sit down, but eventually people wandered forward and took their seats in the second and third rows, which had been reserved for family.
Time seemed, somehow, both to crawl and rush simultaneously: molasses and water. It wasn't long before the organist was up in the balcony, playing the prelude while people filed into the church. I'm not the type to constantly turn around to see who's there, but because I've been a member of this church since the fifth grade, I was conscious of the building's dimensions and acoustics, and could feel the sanctuary filling behind me while the clergy took their places in front of me. By 10AM, the church was nearly full.
The organist came down to the front and gave us an excellent rendition of two of the pieces we had chosen: "This is My Father's World" and "Clair de Lune." Music was, I think, one of the most memorable aspects of Mom's service.
Mom's service. The thought was still a strange one, even though I knew she was dead. All this was for Mom. There was her picture on the altar; there was her image, printed on every church bulletin. There were her friends and relatives-- all the people who loved her. You might counter that funerals are for the living; I agree, but such ceremonies have the dead as their reason for being. Mom's memorial. Mentally, I was shaking my head, even as the service rolled on.
The eulogies given by Mrs. Kopf-Perry, Mrs. Burns, and Mrs. Burns's daughter Beth, were touching tributes to my mother. All three speakers emphasized Mom's caring nature, her concern for others, and her kindness.
Then it was up to us guys-- three of us, not four-- to speak. Sean had already chosen to speak through his music, and he did so brilliantly throughout the service. The Babadjanian piece was a trio for piano, violin, and cello; we're thankful not just to Sean and his friend William, but also to Regino Madrid, who did a masterful job on violin. Later in the service, the Rachmaninoff piece was played only by Sean and William. It, too, was just the sort of music that Mom had loved.
I was the first family member to stand at the lectern. The walk up to the stage felt more as if I were floating; the service had taken on a surreal cast, not because I was nervous, but because-- after nine months of telling everyone around me to be realistic-- part of me still couldn't accept that I was about to deliver a eulogy for Mom. I managed to get through my notes without too much trouble, but I think I went way overtime: the original plan had been for me to speak only five minutes.
David went next. I remember being curious about what he would say, since none of us had shared our eulogy ideas with anyone else in the family. As it turned out, David delivered a eulogy that was both touching and humorous; it was a fitting tribute to Mom. Dad came next, and he, too, uttered words of love and laughter. I don't know how funerary speeches go in other cultures; I don't know whether levity is kosher outside of the modern Western context, but personally, I was glad that we three guys were each able to evoke our love for Mom in ways that provoked a smile and a chuckle. None of it was meant in disrespect. And Sean's music was the wordless paean that capped it all off.
I was thankful for Pastor Jeri's sermon, which emphasized familial love-- a theme that resonates with all human beings, but which would have caught the attention of the Koreans in attendance, for they all would have been thinking about the concept of hyo (Chn. hsiao, filial piety), a Chinese term whose meaning, in the Confucian context, refers to the bonds of love and duty that link the generations. I don't know whether people realize how much Jeri, in addition to her other duties, suffered alongside us, often coming at least once a week to see Mom wherever she was-- at home, in the ER, in the ICU. This was a feat of devotion and commitment unmatched by almost anyone else. As far as I'm concerned, Jeri can come in and out of our house whenever she likes, even if it's just to crash on our couch or in a spare bed for a few minutes before she moves on to the next thing on her never-ending to-do list. I can say, about many of the people who came to see Mom, that our family can never pay them back for their kindness, but this goes doubly for Pastor Jeri.
The service ended with "Arirang"-- surprise, surprise. But the music, however stereotypically Korean it might be, felt as right as breathing in this context. Our family crossed the distance between the sanctuary and the CE Building in an uneven line; some of us hung back while others of us marched right on over. We saw the round and rectangular tables, all now laden with food, and we took our places in the building's main hall, in front of the stage, waiting for the congregation to file in for the reception.
What followed was a blizzard of handshakes, hugs, and tears. Not my tears, nor those of my father or brothers: we smiled, we greeted, we talked; we ended up hearing the same questions and saying the same things over and over. People congratulated us on a beautiful service, complimented our speaking ability and our composure, asked us what we would be doing next. "Where do you go from here?" wasn't a question I felt ready to answer on that day; even now, a week later, I find it hard to peer into my own future. But I suppose it's natural for people to wonder what the next step is. If the moment of death is a threshold, then of course people want to know what lies on the other side-- not merely for the dead, but for those who survive the dead.
We were all impressed by the sheer number of people who came on Mom's behalf. Not only were Mom's Korean friends in attendance, but also a ton of friends and coworkers from her old job at the National Association of Letter Carriers. People we hadn't seen in years also came to see us, and along with my childhood friends, I had the chance to meet two blogging buddies (one of whom I'd met before-- apologies for not recognizing you right away, Jason!).
I don't know whether Mom would have been proud or mortified. She would never have wanted such fanfare for herself, but she was gregarious enough to enjoy a good party. Whether a memorial reception qualifies as "a good party" is debatable, but I saw folks talking and laughing and eating. Mom would have enjoyed that.
Somehow, our family-- Dad, my brothers, my aunts and my uncle, my cousins, and me-- all got through it. The line took about two hours to peter out, and when it finally did, I allowed myself to turn around and look up at the wall on which the slide show of Mom's life was playing. I watched each moment appear and fade: fleeting glimpses of a beautiful, smiling Mom throughout the decades. And even though my mind knew that existence is marked by impermanence, my heart tugged in a different direction, and keened for Mom. The images weren't her.
I finally cried then, and while the tears were streaming down my cheeks, Dad found me, and for the first time in nine months, we allowed each other a vision of our private pain. When we looked into each other's eyes, we saw the same sad embers burning there, the same desolation radiating from both our hearts. We were Mom's 24/7 caregivers, and now she was gone. Dad cried, too, his face showing more naked anguish than I had ever seen. We had, all of us in the family, experienced an amputation of the soul. My aunt was right: none of this was fair. I have no idea whether anyone saw me and my father gripping each other in a desperate hug; earlier on, many people in the reception line seemed to think that we guys had all "held it together" or "been stoic" during the service. Perhaps we had, but if those people were secretly thinking that we weren't outwardly sad enough, they were wrong. No structure, however large, could contain our grief-- not a church, not the entire world.
But the tears were, in their own small way, therapeutic. The reception was essentially over by 3PM, and a desultory cleanup operation was already under way when I silenced the slide show, collected my thumb drive, and helped folks to package food and recover unused plates, cups, and napkins. I spoke with my relatives a bit, and with my buddy Sam, who kindly hung around with his mother and sister. I can't remember much of what anyone said. Perhaps it's best just to remember the mood, which was one of fellowship and conviviality. A few more hugs, a few more words and waves and bows, and the day was over.
Our thanks go out to the people who came for the memorial service, to those who helped with all the preparation, and to those who helped with the cleanup. We also need to thank the Washington Korean Women's Society for their enormous financial donation to our family-- this being over and above the many visits, food deliveries, cards, and letters we've received from society members (many-- if not most-- of whom are Mom's personal friends), not to mention from everyone else.
My father is busy writing thank-you cards to everyone he can think of. He's a better man than I am; personally, I'm content to leave matters with this public thank-you. Dad's old-school, though, so many of you will be receiving a small card from him in the mail.
I haven't forgotten my promise to link to an online slide show featuring the pictures shown at the memorial. That is, in fact, my very next project: file size reduction and slide show assembly. After that, despite the fact that the house still needs renovation work, Dad and I are going to take time off to do our separate things. Dad says he wants to go to Texas to see our relatives there; I'm planning to find a spot where it's completely silent, and just hang there for a week or two. The quiet might do my troubled heart some good.
PS: To all the people who, during the reception, thanked me for having written this blog, I say: You're welcome. It served the practical purpose of keeping people informed, and also allowed me to vent my frustrations (at least partially; much remains unblogged, but can be found in private emails to various friends). Although I've been extremely disappointed in the number of people who couldn't be bothered to keep up with Mom's news, on January 16 I learned just how many people didn't fit that description. So even as I'm saying "You're welcome," I offer my humble thanks in return to all those dedicated readers-- especially the ones who have stuck with the blog from the beginning.
PPS: Along with the above-promised slide show, I'll be writing an epilogue of sorts. I can't say when that will happen, but when it does, it'll be this blog's final entry. Comments will remain open, though I'll still be vetting them before allowing them to see the light of day (as always, please see the comments policy for details).
A big, massive hug to you all.
Tuesday, January 19, 2010
For his birthday, we took Dad out for dinner at Maggiano's, one of the better Italian restaurant chains in the northern Virginia area. We all ended up stuffing ourselves silly, and most of us had trouble sleeping until near dawn. Maggiano's, with its enormous portions, provided just the sort of vulgar excess we needed, I think: a chance to introduce some levity and enjoyment into a time of tears and quiet suffering.
Dad's birthday was this past Sunday, January 17, the day after Mom's memorial service. I'd like to write about how that day went, but for the moment, I'm going to leave you some glimpses of the ceremony-- glimpses in the form of the church program and some notes about the scriptural choices I'd made on behalf of the family.
The memorial service was a massive group effort. Many people from the church community and from Mom's Korean society helped prepare the food and refreshments at the reception; I created the PowerPoint slide show and drafted the overall liturgy, basing it squarely on the memorial liturgy for another family in our church. That template had been provided by Pastor Jeri. Almost everyone in the family contributed music selections to our liturgy; Debussy's "Clair de Lune" was my choice, while Dad chose the hymns "This is My Father's World" and "I Danced in the Morning." We all agreed on "Arirang" for the postlude; Sean picked the hymn "In the Bleak Midwinter" and carefully chose his Babadjanian and Rachmaninoff pieces, which he knew Mom had loved. I designed the program's cover, but it was Pastor Jeri who took it upon herself to review and finalize the program's overall format. Flowers came to us from all corners, and during both the service and the reception that followed, we were touched to see so many attendees-- probably well over two hundred. The photos people saw at the reception had been primarily gathered by Dad, but many had also been mailed or emailed to us by various friends. I sorted the pictures into decades, but David and Dad were the ones who painstakingly assembled the large display panels of Mom's life.
So: for purposes of remembrance, I'm placing some memorial-related materials in this blog post for you to peruse. As always, comments are welcome.
We begin with a look at the program cover:
Below: page 1 of the program.
Here's a YouTube clip of the Debussy piece. I tried to find a clip of the Babadjanian piece online, but I'm not sure such a clip exists anywhere other than in iTunes, where it must be purchased. That's a shame: it's a beautiful piece.
Below is page 2 of the program.
Our thanks to Mrs. Kopf-Perry, Mrs. Burns, and Mrs. Burns's daughter Beth for sharing their thoughts about and feelings for Mom.
Here's a YouTube clip of the Rachmaninoff piece that Sean and William played.
Below is page 3 of the program. People are still welcome to make donations to the American Cancer Society in Mom's name.
Mom's bio (the death date should actually read January 6, 2010, as can be found in the bio's text):
Instead of preparing a formal speech for my eulogy, I simply cobbled together some notes and spoke from them:
Below is a compilation of the scriptural passages that we had chosen to be read during the memorial service. My comments, which I'd submitted to Pastor Jeri along with the draft of the liturgy, are in italics.
NB: This “wings of eagles” passage seems somehow apropos.
John 1:1-5NRSV (to be read responsively)
In the beginning was the Word,
And the Word was with God, and the Word was God.
He was in the beginning with God.
All things came into being through him, and without him, not one thing came into being.
What has come into being in him was life,
And the life was the light of all people.
The light shines in the darkness,
And the darkness has not overcome it.
NB: I chose the above passage for what it says about Christ-nature, which unites creative love, light, and life. I also made, somewhat presumptuously, one verb tense change: the original NRSV text says, “...the darkness did not overcome it.” This struck me as a jarring clash of verb tenses.
NB: I chose this passage, in which Jacob wrestles with an angel or with God, because of what it says about the nature of the relationship between humanity and the divine. Wrestling isn’t quite the same notion as struggle; the latter seems to imply a bit more desperation, whereas wrestling can be contentious in a variety of ways-- not always unfriendly, either. Jacob’s contest is an example of a rough but friendly encounter: in the end, he is deliberately hurt by his adversary, but he receives a blessing and is confronted with mystery when his demand to hear the wrestler’s name is rebuffed.
Our own encounter with the Nameless can often be like that: painful, rewarding, and not easy to categorize. Also of note in this passage is Jacob’s chutzpah in asking for the blessing and for the wrestler’s name. I was always impressed by a passage in a book called Comparative Religious Ethics that notes that one of Judaism’s major contributions to world religion was chutzpah-- in this case, a sort of cosmic audacity in the face of the Ultimate [cf. Job for another example]. Koreans know all about chutzpah, and Mom was no different from the rest of her people in that regard. She spoke her mind, she wanted the best out of life for her family, and she wasn’t shy about being demanding. The difference between her and Jacob, though, is that she would never have asked a blessing for herself.
Psalm 23KJV (read in unison)
Matthew 6:25-29, 34NRSV
NB: This is the section of the Sermon on the Mount where Jesus evokes nature to remind us of the need for a present-oriented mindset. I chose this in part for personal reasons, not least of which is that I consider it a “bridge passage” in Christian-Buddhist dialogue. Buddhism is highly empirical and present-oriented; its focus is on mindfulness and compassion, which Buddhists see as two sides of the same coin. Nothing is stopping Christians from looking at life that way, either. Jesus is saying, “Look around you, and note how nature just is. That should be sufficient as you consider your troubles.”
I also chose this passage because of what it says about Mom’s heart. Even though she was often a consummate worrier, she also kept her head and responded to situations as they presented themselves. In Korean Zen, this is called “following your situation.” People who fail to follow their situation, who fail to look around them, get mired in all sorts of unnecessary, human-generated silliness-- problems caused by the desperate churning of their own minds. In her roles as Korean women’s society president and board member, Mom was often the calming influence on more heated personalities, putting out fires often caused by volatile combinations of pride and misunderstanding.
Jesus never explicitly said, “Just breathe, y’all,” but in asking us to consider the birds or the flowers, he was calling us to be silent and observant: to pay attention to the world, to turn outward, away from our own egos. The simple act of turning outward, of following our situation, is often enough to begin to introduce peace into the world. It’s the first step on the path of love. Which leads us to the second, and unsurprising, scripture selection...
1 Corinthians 13
I've published the above material here to offer a taste of what Mom's memorial service was like to those who weren't able to attend it. I also wanted to give those who did attend a chance to relive, for a moment, the ceremony they experienced-- and to afford them something of an insider's perspective re: rationales for scripture choices, eulogy notes, etc. I haven't asked Dad or David for permission to publish their eulogies, which is why they don't appear here as well.
Sunday, January 17, 2010
The Ducoulombier family has sent along this e-card for my father on the occasion of his 68th birthday.
Top: Héloïse (second daughter, third child)
Middle: Timothé (second son, fourth child) and Véronique (Domi's wife)
Bottom: Dominique (my bud since 1986), Joséphine (eldest daughter, first child) and Augustin (first son, second child)
Got all that? There'll be a quiz later.
Our family would also like to thank the Higdon family and Mount Vernon Presbyterian church both for the birthday cake and for the round of "Happy Birthday" singing today. As one lady said to Dad, "Happy twenty-first!"
UPDATE: I was either half-asleep or at Maggiano's with Dad and my brothers when it happened, but it seems my buddy Mike gathered his family together and sang "Happy Birthday" into the phone for Dad. He heard the voice mail. Thanks, Mike and family.
Saturday, January 16, 2010
The memorial service went about as well as could be expected. I'm operating on only an hour and a half of sleep right now, so I'll write more in detail tomorrow or Monday, when I'm more awake and alert. Tomorrow, as you'll recall, is Dad's birthday. Like Muhammad Ali, who is the exact same age (give or take a few hours), Dad will turn 68.
Friday, January 15, 2010
Most or all of us guys will be at the church around 8AM tomorrow, even though the service starts at 10. I've heard that a Korean contingent will be arriving with finger food around 9:30 (so that they can set up in time for the reception, which will occur immediately after the memorial service). Members of the congregation are also bringing food, so in true Presbyterian fashion, no one will be going hungry.
We've been busy all day today. Sean practiced at home, went into DC to pick up the violinist, and had an 8:30PM rehearsal at the church. He won't be speaking; his music will speak for him. David's writing his eulogy, and has been out on various errands, including picking up his suit from the tailor's. I had to do that as well; the tailor told me today that he saw the news about Mom in a local Korean-language paper. Perhaps he'll show up at the memorial service tomorrow morning.
Dad and I are each toiling away-- Dad on his eulogy, and I on my albatross, the PowerPoint presentation. At some point, I'm probably going to have to throw in the towel and declare the job finished, whether it actually is or not. The amount of scanning we've done (I had a huge amount of help from David) is larger than any scanning task I've done before. It's been complicated by the fact that, at 300dpi, the images show dust motes all over them, which has forced me to spend long minutes using Photoshop to clean up every single picture. Minutes easily snowball into hours. On top of all that, I still haven't gotten beyond two paragraphs on my own eulogy, and am thinking that, since I'll be speaking for only five minutes, I might just carry some notes up to the lectern with me. I've started and deleted the eulogy text too many times to count, so perhaps this is a hint that I need to stop holding on to the notion of a scripted talk.
We're all tired and stressed, but we're chugging away. As you might imagine, we're just looking for Saturday to be over. I don't mean that as a slight to anyone-- certainly not to our relatives, who have all taken the trouble to come up from Texas for a single night and morning; nor to Mom's many friends, who will be attending the memorial service; nor to the hardworking people who have been helping us put the service together. I guess I'm just saying that we guys are all exhausted, sad, and just hoping for a bit of a breather.
The very next day, Sunday the 17th, is Dad's birthday. We'll likely be treating him to a nice meal somewhere in town; I can only imagine that, for Dad, occasions like birthdays and anniversaries shouldn't be celebrated alone. At the very least, we sons should do our best to offer him our presence and companionship. We did it for Mom; we can and should do it for Dad, too.
My French brother Dominique sent me these lovely drawings from his kids, who created these for us after he told them about my family situation.
What amazing kids. Merci à vous tous, les enfants. Vous ne vous rendez peut-être pas compte combien votre geste m'a touché. Je suis ému.
I had wanted to put photos up on Flickr before I made the PowerPoint slide presentation, but we've got a major problem: Flickr is free, but has a 100MB storage limit. Because it would have taken me far too long to reduce file sizes on the hundreds of files we have, I've been using un-reduced photos for the PowerPoint slide show. This shouldn't be a problem for what we're doing at the church, but with several gigabytes' worth of photos (and my thanks to those who mailed, emailed, or handed pictures to us), there's simply no way I can upload everything to Flickr without a massive campaign of file size reduction.
I'm sorry, but that can't happen in the time I have left before the memorial service, so please expect the Flickr slide show to occur a few days after Saturday.
Thanks and sorry.
Thursday, January 14, 2010
We'll be visiting the church tomorrow (Friday) afternoon at 2PM, armed with all manner of things to set up for the memorial service. Our thanks to the church staff and congregation for their past and future help in making this service go smoothly. A lot of people are working behind the scenes; I can't give them all credit here, but They Know Who They Are.
Thank you. And see you Saturday.
Monday, January 11, 2010
We're meeting with Pastor Jeri on Wednesday to discuss matters related to the upcoming memorial service. I've turned in (1) my draft of the liturgy (with plenty of red-font annotation), (2) my Photoshop design for the church program's front cover, (3) a two-page bio about Mom, and (4) a photo to go along with the bio. I've also been working on organizing all the photos of Mom for the pictorial tribute, and am at a point where I can begin my massive scanning project. This promises to take more than a day, even if I scan several pictures at once, and there's still a great deal of photo editing and manipulation to do (e.g., photos that have been scanned together will need to be cut into separate individual shots; labels will need to be applied to give credit to the people who have contributed pictures to the tribute; red-eye corrections need to be done, etc.).
I'm doing my best to respect my original idea: the division of the photos into decades (see the bottom of this post for details). However, I can't promise that all the photos truly belong to a given decade. As it turns out, we have a pile of un-stamped pictures showing clothing and hairstyles that could well be interpreted as era-straddling, making it hard to assign them a proper time period. I also have no plans to order the photos within each decade, i.e., a photo from 1999 might appear well before a photo from 1993, and a photo from September 2002 might appear before a photo from May 2002. I'm pretty sure that people viewing the tribute will forgive this peccadillo.
There's plenty more to do, but it's being done, slowly but surely. David has bought a suit and is having it tailored (I urgently need to do likewise). He's also going to help me arrange physical displays of Mom's photos for the lo-tech aspect of the photo tribute. Sean, who instead of speaking will be performing some of Mom's favorite classical pieces during the service, is working through the nitty-gritty of recruiting fellow instrumentalists. Along with all the funerary paperwork (and the regular paperwork that comes with having a house), Dad's doing some necessary grocery shopping today, and will be devoting himself to the cleaning of the house this entire week. He, David, and I also need to write our eulogies-- a task I hope to begin tonight.
Far from being a time of rest and meditation, things have been hectic here. And despite all the activity, the whole affair seems to feel hollow at its center, as if, somehow, Mom should be here to help us organize everything. Just the other day, I was struck by the weird feeling that we had left Mom stranded somewhere, and were supposed to pick her up. I guess this is an improvement over what I'd been feeling the day Mom died. On that day, I wondered why my heart was still beating. It didn't seem fair, somehow, for the world to continue without her.
See you Saturday, I hope.
Saturday, January 9, 2010
[Reminder: see this post for information about the memorial service for Mom. I'm assuming that, if you're savvy enough to be online, you're savvy enough to use MapQuest or Google Maps to get directions to the church. There's no reason to phone the church (or us) for directions. Both aforementioned websites are extremely easy to use. Thank you for understanding.]
Sometime around the end of January, this blog will go dormant, its purpose having been fulfilled. It had originally been about my walk across America, but it became a chronicle of something far more important: the decline and death of my mother due to glioblastoma multiforme, the most common and most aggressive form of brain cancer there is, and a cancer for which there still exists no cure.
There's very little left to write about as regards Mom's story; we stand in the aftermath of her passing. For now, our family's focus is on getting through the memorial service more or less in one piece, emotionally speaking. I did most of my sobbing on the day Mom died, and have cried a few times since then, but we are all, slowly but surely, picking ourselves up, dusting ourselves off, and doing our best to climb out of the wreckage of the past nine months.
Nine months. The time it takes to gestate a baby. It's still hard to believe that Mom is gone, but there we are-- those are the facts. Mom stepped through one door, and soon we'll step through another: the gateway to the rest of our lives. Here's hoping for brighter horizons.
You may have noted that I haven't described the events of Wednesday, the day Mom passed away. That was a deliberate choice. I did, in fact, tearfully type out a detailed report of Mom's death a day later; that part of the story might appear in the book version of this sad tale, but for now, I'm keeping it private. You, Dear Reader, don't really need to know what I saw and felt that day. Not yet, anyway.
Mom's been gone a little more than three days. Dad's been on the phone with various people, and today he received a visit from the funeral home providing cremation services. I've been working on several things at once: the format for the memorial service liturgy, Mom's bio for the church bulletin, her eulogy, and the biggest project of all: the compilation and finalization of a pictorial tribute to Mom. I'm hoping to send Pastor Jeri a draft of the liturgy format tonight; I also want to send her the finished bio, if possible. As Dad reminded me, we've got a lot of housecleaning to do since we're sure to have guests over the weekend. Relatives will be flying in from Texas; I'm not sure how many (if any) will be staying at our house, and how many will be rooming with our relatives in the area, or at local hotels. David and Sean are already sleeping at our house, but we're all willing to give up beds for house guests. To be discussed, I imagine.
It's been a bright, sunny day. Another day without Mom. I feel no self-pity about my own situation-- no sense of "woe is me." Instead I'm sad, profoundly sad, that Mom doesn't have the chance to see today's sun, or enjoy the way Sean's dog Maqz has been bounding happily around the house. I suppose this empty feeling will be with us for a while.
Ah, yes, before I forget: once the pictorial tribute is done (which should happen in the next few days), it will first appear on Flickr.com. This blog will provide a link to it.
Thursday, January 7, 2010
Those interested in making the pilgrimage to attend the memorial service for Mom should be advised that we've fixed a date and time:
10AM on Saturday, January 16, 2010
Mount Vernon Presbyterian Church (MVPC)
2001 Sherwood Hall Lane
Alexandria, VA 22306
There will be a reception afterward in the Christian Education Building, also located on the church grounds. Whether you live nearby or far away, you are all invited to attend. Pastor Jeri says that the MVPC phone tree will be activated to alert people that they are, if they wish, free to bring hors d'oeuvre-style food for the reception. I told her that I would do my part to advertise the memorial and reception to this blog's readership.
If you're an online friend whom I've never met face-to-face (and that would be most of you), perhaps we'll meet each other there. Please don't feel I'm pushing you to come, though: it's going to be an awkward day on which to meet for the first time, and you may live far enough away that travel time and expenses might be prohibitive. So if attending such an event makes you uncomfortable for any reason, I understand. I'm sure we'll still be in touch via email.
Our family thanks you in advance for attending the memorial service, and to all those who have sent condolences and photos of Mom: you have our gratitude.
Wednesday, January 6, 2010
At least for the next little while, the world has ended. I don't feel like sharing much at the moment, but I'll say this: Sean, Dad, and I were there in time to witness Mom's passing. Her heart stopped beating, and just to be sure she was comfortable, a tech added morphine to her line. She passed away, her chest still moving from the ventilator. David arrived just after she had gone.
Mom died of her own accord; no extubation was necessary. I don't attribute any volition to her timing-- as if she had somehow chosen her moment-- though I suppose it's romantic to think that she died on her own terms. That's fine with me. And who knows? Maybe it's the truth. Personally, I think she was already gone, so this was only a matter of time.
Rest in peace, Mom.
We're over four hours into Mom's final full day on earth. Perhaps I'm reckoning that wrongly: as I mentioned before, I think Mom checked out weeks ago, in the early morning on December 22. Wednesday is, at the very least, her body's last full day among us. We spoke with a doctor, a chaplain, and a social worker, and have all agreed that Mom's extubation will occur on Thursday morning at 10AM.
Every human story begins full of promise, and for most of one's life, it's a mystery as to where and when the final pages of that story will be set. We harbor the illusion that that non-specificity can somehow stave off death: as long as we don't know the exact time and location of our demise, life seems to have no limit.
But for Mom-- or her body, at least-- we now know. Mom will die in Washington, DC, inside the Walter Reed Army Medical Center, either in the Ward 40 ICU, Bed 7, or upstairs in a one-bed palliative care facility (assuming Mom lingers longer than an hour off the ventilator, and further assuming that the bed hasn't been taken by someone else). Mom will fade away to a chorus of mechanical whooshes and beeps and drips, with medical staffers outside her berth going about their business-- some serious, some joking with their colleagues, blissfully detached from this, our family's threshold moment.
But Mom will leave us in the daylight, and she'll be surrounded by her family: those who love her most. We four guys will be there for her, along with Pastor Jeri and my other brother Mike. We'll stay with Mom until the doctor declares her dead and announces the time of death. This will set in motion a series of events that are, thankfully, out of our control: the signing of a death certificate, the moving of Mom's body to the morgue, its transferral to the cremation service, and the service's completion of the death certificate.
At that point, we regain some control over the proceedings. Mom's ashes will be delivered either to us or to the church, depending on whatever Dad arranges. We'll continue to hash out the format for the memorial service (probably Saturday, January 16; we'll confirm this). I'll finish the photo tribute and my eulogy; Dad will compose his as well. Sean will rehearse with some musician friends; he's already selected two classical pieces for the memorial-- pieces Mom loved. The family will comb through scriptures for appropriate verses.
But back to the present. This day, Wednesday, is everyone's final chance to visit Mom. I apologize if some of you have been turned away by the ICU staff; we had originally been told that anyone could visit Mom at any time, but we've heard reports from some that the ICU staff is asking non-family members to visit between 11AM and 8PM. The staff itself hasn't been particularly clear or consistent about visiting policy, so please call ahead to confirm that it's OK to see Mom at your desired time.
I'm not sure what I'll be doing; I may stay with Mom a few hours throughout the day, then go home, sleep, and return in the morning to be with her in her final minutes before she steps through the Great Door. Or I may decide to remain with her through the night-- one last vigil at her bedside. I really don't know.
Do you have regular photos or digital photos of Mom that you would like to be included in the pictorial tribute? Please email them to me (my contact info is available through a link on the right-hand sidebar of this blog) or mail them to our family (email me for our address, which I'm hesitant to display in public) as soon as possible. If they don't arrive soon, I might not be able to include them.
If possible, please indicate the YEARS in which the photos were taken. I'm segregating photos by decade, in this format:
Chapter 1: 1940s-1960s
Chapter 2: 1970s
Chapter 3: 1980s
Chapter 4: 1990s
Chapter 5: The Aughts (2000-2009)
Chapter 6: The Cancer Period (4/2009-12/2009)
I don't want Chapter 6 to scare anyone. I have no desire to show vivid images of Mom's disease. There will be no MRI photos, no pictures of her damaged skin or of her craniotomy site, no photos of Mom's final weeks (as you can imagine, I never took any). There will, however, be images of Mom in various stages of disability. This can't be helped. Some images will be painful to see, but trust me: whatever pain the viewer feels won't compare with the pain of having actually been there, with Mom, to feel her misery up close.
Chapter 6 is important to me. This is the time when I reconnected with Mom in ways that hadn't been open to me since my childhood. The cancer gradually stripped Mom of her sophistication and returned her, however cruelly, to a state of simplicity that pared away a lot of the anger and resentment that often characterized my relationship with her, especially during my college years and my twenties. Did I pity Mom during her illness? Of course I did-- who wouldn't pity a person in such straits? Would she have resented my pity? Of course she would have. She did, in fact, get angry with me when she discovered that I didn't plan on returning to my trans-American walk. She knew I was staying because of her, and the thought burned her.
But any disease that rips away a person's dignity will engender pity. As proud as we were of Mom's defiance, it grieved us to see her independence drain away as quickly as it did. At the same time, the disease was a gateway through which I found myself once again able to hug Mom, touch her face, kiss her cheek or forehead, and hold her hand for long, long periods. I walked with her, joked with her, and above all, I fed her. Our relationship had become both a role reversal and a regression.
For Dad, too, this newly docile Mom was finally accepting his tender gestures without her usual Korean brusqueness-- the silly feminine rebuffs that Korean women will use to pretend that a man's gestures mean nothing to them. Perceptive men, like Dad, see through the ruse and understand that, hidden underneath such denials, there lies a deep and abiding love. But with the cancer peeling Mom down to her core, the time for ruses had ended. Dad, too, was introduced to a simpler, more direct emotional connection with Mom, one not complicated by the mind games that couples play. Her "I love you" to Dad was evident in the way she looked at him and embraced him-- toward the end, she was holding on to him for dear life whenever she had to move anywhere. Her dependence was complete, but it was matched by her absolute trust in Dad.
I've spent these months in Mom's role, frequently carping at Dad whenever I felt he was making a serious mistake or being generally loopy. But in the end, Dad was the one who was there to take care of Mom every time she awoke and every time she went to bed. He faithfully gave Mom her meds, following a schedule had been painstakingly plotted out. He was (and still is) the one taking care of all the paperwork associated with regular bills, insurance, and all the rest. He's even been sustaining me during this jobless period of my life with regular monetary infusions. Dad's retired, and neither of us could have taken care of Mom as we did had we gotten jobs. As I said: 24/7 care.
So much credit must go to Dad for the way he ministered to Mom. If imitatio christi (the notion that one should use Christ's life as a template) includes some analogue for foot-washing, then Dad was Jesus a thousand times over. He washed Mom; he insisted on being the one to prep her for travel, and despite the wrenching pain in his back, he was determined to be the one to lift Mom onto and off her seat in the van, almost every single time.
Tuesday night, after the doc and social worker and chaplain had left, Dad stared at the floor and said he felt he had let us all down by not somehow keeping Mom with us.
You didn't let anyone down, Dad-- least of all us and Mom. I saw that in Mom's eyes.
People have been writing me to say that I've done all that I could have for Mom. In truth, all of those good folks should be sending that message to my father.
Our thanks to Mrs. Eleanor Landgrabe, my former French teacher, for having written an absolutely beautiful tribute to Mom. Mrs. Landgrabe stopped by our house a little after 7PM (her husband, Dr. Ed Hayes, was in the car) and handed my father a small hard-bound book filled mostly with blank pages-- blank except for the first five or six pages, on which Madame had left her eloquent letter, which was addressed directly to Mom.
Since the rest of the book is blank, we've decided to use it at the reception following the memorial service. Our hope is that Madame's message to Mom might inspire others to write their own messages therein. The book is small; we might need to add an extra binder (with lots of paper) for others to write their messages.
Our thanks to the people who have been visiting Mom in the ICU. We're sorry that visitors have had to see Mom in such a broken state, but we're glad they made the effort to be there. One thing I've learned over these months is the importance of being there in a crisis.
Also: a big thank-you to my brother David. On his iPhone, he had a heart-warming photo of Mom and Dad. During our family's talk with the medical personnel, David felt that our interlocutors needed to be reminded that Mom isn't just a sack of dying flesh or a jumble of graphs and numbers: she was and is a person, someone whom, in better times, they would have gotten to know and love. David's picture showed Mom as we had known her: standing with Dad, glowing with life, happy as a clam. I hope the doctor, the social worker, and the chaplain understood David's wordless message.
Over the months, we've seen many medical professionals cut Mom apart analytically, using the language of statistics to measure the progress of her cancer, the probability that a certain treatment might delay tumor enhancement, and so on. I'm not against such language; I've relied on it myself. But too often, we've seen how the language of numbers can, when overused, create a psychological distance that makes the entire therapeutic/treatment process feel cold. Worse, such language (and the thinking behind it) can blind the medical professionals to the tangible personal reality sitting before them-- the frail living being in her wheelchair who has no choice but to accept whatever pronouncements and decisions are made by those around her. Even some social workers operate according to discernible rhetorical formulae, asking questions that shepherd the conversation along predetermined lines of thought.
Mom was never a set of statistics; if she had been, her initial MRSA infection would have been anticipated; the same would have been true for her allergy to vancomycin and the uselessness of carboplatin. But at every turn, Mom's battle with cancer veered-- always in a negative way-- from the statistical path. Most GBM sufferers don't experience rapid tumor enhancement within eight weeks; Mom did, as we saw with her second mass. Most people don't suffer near-lethal post-operative MRSA infection; Mom did. Most GBM patients are men; Mom's not. In the end, Mom didn't even come close to enjoying the mean life expectancy of the typical GBM patient (13 months; Mom barely made it through eight-and-a-half months). Statistically speaking, Mom should still be quite alive and more or less functional, with several months of life ahead of her. But many of the docs saw her through the lens of their stats, and that explains, in part, the failure of their treatment methods.
All the same, the medical community deserves thanks for what help it could give Mom since last April. Like Dad and myself-- Mom's 24/7 caregivers-- the docs weren't able to work miracles. But they did what they could, and for that, we're grateful.
As always, we're thankful to our fellow congregants for their compassion, presence, and help. Food, cards, flowers, phone calls, a wheelchair ramp, snow shoveling-- you name it, it's been done for us, and every member of Mount Vernon Presbyterian Church deserves our unreserved thanks. Dad constantly shakes his head in amazement at the gifts we've been given by the good people around us.
And not just MVPC: Mom's Korean and non-Korean friends, whether from her women's society or from her office, have been a wonderful support as well. From these groups, too, we've seen tremendous generosity in the form of cards, gifts, visits, and all manner of expressions and tokens of love.
Mom's relatives also deserve thanks: they've visited us, they've doted on Mom, and they've read this blog and cried about the news of Mom's progress. I'm especially moved by my cousin Ji-hyae's framed set of two photos of Mom and the rest of us. I've stared and stared at those pictures, which make for a heartbreaking contrast with what's happening now.
I know I've forgotten dozens, maybe hundreds, of people in this post. I apologize. There have been times when I thought I should create a cute animation of scrolling text-- like the ending credits of a movie-- to which I could add names as needed. But I never got around to doing that, and I'm sorry. In private, I've done my best to thank people as I see them: every time we've received food or some other form of face-to-face help, and every time I've received emails from both friends and strangers who have somehow found this blog.
So I feel I need to cover all the bases. To all and sundry, then: thank you.
Our hearts haven't completely turned to ash yet. There's still some humor rattling around in there. On Tuesday night, we visited with Mom, then had a closed-door meeting with the on-duty doctor, the army chaplain, and the social worker to discuss end-of-life and post-mortem issues.
Afterward, we said our good-byes to Mom, and David suggested an outing at IHOP (for my foreign readers: IHOP is the pretentiously named International House of Pancakes-- as if the chain were popular in France or New Zealand or Korea). We went there and ordered shamelessly high-carb meals. David's meal, a cheesesteak, had too many onion rings on the side, so at the end of his meal, he decided to stack them and top them off with a square-cut piece of ham to create his own version of the ancient Korean observatory, Cheomseongdae. See below:
Inspired. And an indication that, even with death this close, our family remains unbroken.
Tuesday, January 5, 2010
We're not totally decided yet, but Mom's extubation will most likely occur this coming Thursday. We'll be leaving home around 7:30PM to be up to see Mom and to talk to the doctors about what they think. We'll base our decision on what we hear from the docs.
Our thanks to Pastor Jeri for sitting and talking with Dad, Sean, and me about What Happens Next. It's comforting to know that so many people are in our corner to help us with the coming transition in our lives. A lot of the things that I thought we'd have to worry about have turned out not to be a problem. As a family, we can focus primarily on the important things, knowing that a lot will be happening in the background on our behalf. For example: the church already has templates for memorial liturgies, so it's merely a matter of tweaking the liturgical format to fit our preferences. Pastor Jeri also provided us with information about a well-respected cremation service, so the disposition of Mom's remains is no longer an acute concern. And the memorial itself doesn't have to follow hard upon the heels of Mom's cremation (which will likely be a private affair), giving us time to plan and prep for the memorial service and the reception thereafter.
Right now, the most important thing is to set the date for Mom's extubation, then call the cremation service, which will coordinate with Walter Reed on the moving of Mom's body. With all of that accomplished, a date for memorial service can be set; mostly likely, it will occur on January 16, one day before Dad's 68th birthday.
I'll be sure to say more tonight once we've been to the hospital, but for the moment, January 7 and 16 are looking to be the important dates for both the family and the public. The 17th, Dad's birthday, will be important for different reasons, and that will most likely be a family affair.
I had no energy or motivation to do anything last night, but Dad was in his bedroom for hours, sifting through old photos and finding ones that merit scanning for the photo tribute.
Today, Pastor Jeri is coming by at noon-- presumably to talk about the memorial and other post-mortem concerns-- and I've got to get working on a eulogy, photo prep, and research on cremation options. As a veteran, Dad had thought about Arlington Cemetery, and although they'll cremate the spouse of a veteran for free (more precisely, on the taxpayer's dime), they require interment or, in the case of cremation, "inurnment." We sons have rejected the notion of burying Mom's ashes at Arlington Cemetery; our own preference is for no grave, but instead for a scattering of ashes in the places she found meaningful.
Much to be done. Not a lot of time to do it. You might say that there'll be time to work on these things after Mom dies, but I'm not sure I can guarantee my own sanity after that point. So I need to be working on my agenda now.
Monday, January 4, 2010
We're at the very end. Mom's cancer has completely taken over, her scalp is covered with open sores, and her lungs are filled with pneumonia. She isn't running a fever because her immune system has completely shut down: it has nothing left to give. Mom might go on a while with her ventilator, or she might pass away during the night. That's how fragile the situation is. "Hours or days," we were told; that's how long Mom has.
Within 48 to 72 hours, our family is going to have to make the decision to extubate Mom, removing the support of the ventilator. I've been warned that that's how such things go, and it appears we're the family next in line to experience this particular pain.
The doctor tells us that it's possible Mom might continue to breathe after extubation; it happens with some patients, and it's hard to predict how long the breathing might go on. He said that, if it appears she's breathing on her own for some time, she can be moved upstairs to a small hospice facility where she will be given palliative treatment so that she experiences neither anxiety nor discomfort as she fades away. Both the doctor and the social worker felt that the entire family should be there for extubation, an idea that we already agreed with.
So there will be no true hospice care of any kind for Mom-- no homebound hospice, nor an institutional hospice. In her current condition, she's too delicate to move anywhere. The ICU will be where she spends her last few days, and unless we as a family fly off the rails and somehow decide otherwise, Mom will be extubated this week.
That gives Mom's friends only a few days to make their pilgrimage to her side. If you're a friend, tell her goodbye, and say how much you love her and will miss her. If you feel like crying, then cry. If you feel like laughing, then laugh. Don't force yourself to act with fake cheer or bravado. Now is not a time for falseness.
Sean and I are at the parents' house; we left before Dad and David did, having taken some time to say preliminary goodbyes to Mom. When David and Dad arrive, we'll be discussing the next steps, and getting right to work on whatever needs to be done for a memorial service, for cremation, and for whatever other post-mortem duties await us.
[NB: If you haven't seen the IMPORTANT ANNOUNCEMENT, please do so.]
Dad was up much earlier than I was, and has been on the phone all day with various people-- friends and folks who know something about hospice arrangements.
According to Dad, it's not looking good for homebound hospice care. Some of the organizations providing such care want two to three weeks' notice before they can move equipment to a given house. Others are unable to provide ventilator-related services. Even with institutional hospices, there are hurdles. Moving Mom anywhere promises to be logistically and bureaucratically difficult.
So for now, Mom remains in the Walter Reed Army Medical Center ICU. We'll be seeing her soon; first, I need to hit the local post office to pick up two Christmas parcels. They would have arrived in time for Christmas, had it not been for the snowstorm.* Both are gifts for Dad.
Later today, I'll begin gathering photos for my project: the creation of visual tributes for Mom. Most likely, the blog will eventually link to a Flickr.com slide show with hundreds of scanned and digicam photos of her life. Those same data files will also be turned into a PowerPoint presentation that, with the proper digital projector, can be shown at any given venue. And finally, physical photos will be needed for a walk-by display-- something a bit more old-school for people who prefer their pictures to have some heft and reality to them, as opposed to being mere wispy photons.
There are other projects as well. Before I discuss the specifics of memorial service arrangements with my pastors, I need to run by several scenarios with Dad and my brothers. I already know that Mom wouldn't have wanted pageantry, but I also know that there were things in life that she loved, such as the classical music that both David and Sean provided through years of violin, viola, cello, and piano playing. (Sean has been a professional cellist for several years.) Such elements should be a proper part of Mom's memorial service.
Finally, I need to start working on a eulogy. I've gone back and forth on this idea: on one hand, a eulogy is a printed document that allows the emotionally distraught speaker to coast through his speech, using printed words as a crutch. On the other hand, a printed eulogy, one that's well-planned, allows the speaker to say everything he thinks should be said. The danger of speaking extemporaneously is that one might meander and become forgetful, so overwhelmed with directionless emotion that it becomes impossible to voice the most important things. No eulogy can ever do full justice to the person being eulogized, but every loved one who speaks on behalf of the dead has an obligation to honor that person as well as possible.
Of course, there's no real "right" or "wrong" way to approach eulogies. You go with what works for you. For me, I suspect a written speech will be best. But I may change my mind.
Those are our projects, both for today and the days to come.
*Whatever happened to "Neither snow nor rain nor heat nor gloom of night stays these couriers from the swift completion of their appointed rounds" (see here)?
We are now at a stage where Mom is never going to wake up. Her dependence on her ventilator remains the same as when she was first admitted into the ER at New York Presbyterian Medical Center. Since that night, she has shown no obvious signs that she is interacting with the world anymore. Her body still lives, but as my buddy Mike phrased it, "much of what makes Mom herself has already passed."
We are, therefore, no longer concerned about whether the unexpected presence of visitors might stress Mom. I had, for many months, done my best to defend Mom from all manner of well-intended but clumsy gestures, chief of which was the tendency of some people to try to visit her unannounced. Not only was this disrespectful of our repeatedly stated wishes, it was also very stressful for Mom who, at the beginning of this ordeal, often wanted to disappear instead of being seen. It was primarily Mom's stress that motivated me to set boundaries. Now, however, those boundaries no longer matter.
So the new visitation policy for Mom is simple: if you want to see her and pay your respects before she passes away, if you want to touch her or kiss her or hold her hand one last time, NOW IS THE TIME TO VISIT HER.
Some people have trouble visiting with the dying and/or the loved ones of the dying. Such people feel they won't know what to say, or they're afraid they might burst into uncontrollable tears. Believe me, I've been there, and I'm here to tell you that such worries are rooted in one's own ego. Don't worry about how you'll look and act in front of Mom or us. Those are mere externals-- superficial by nature. If you pass up the opportunity to see Mom merely because you're worried about yourself, then you'll kick yourself later, after she's gone, for not having had the courage to see her one last time. "Goodbye," done face to face, brings a kind of closure that avoidance never can.
Other people may feel that my often-prickly defense of Mom's dignity and tranquility-- especially when it came to my resentment at unannounced visits and my rejection of bogus "cures" proffered by some-- was a sign that I simply didn't want such people around. Not true. All I was doing was enforcing the clear boundaries I had set up. On this blog, during Mom's long period of suffering, I have repeatedly preached the gospel of realism: hope, but not false hope; mindfulness, but not fantasy. Some people, still in denial, tried to offer us superstitious or pseudo-scientific remedies that had nothing to do with Mom's cancer. I, like Mom, am not disposed to suffering fools gladly, so I tended to reject such "kindnesses" rather brusquely and directly. Hogwash by any other name is still hogwash, and even when the potions and spells were offered with kind intentions, I didn't look kindly upon them.
But the rejection of hogwash isn't the rejection of the whole person. We're all capable of saying and doing nonsensical things, and we'll often do such things at exactly the wrong time. For me, if you make a single mistake, you're not persona non grata. If I held everyone to such a strict standard, I'd be a hypocrite, since I myself say and do ridiculous things (more often than I care to admit).
That said, I don't regret the stance I've taken in defending Mom from the slings and arrows of well-intended silliness. Not one bit. I'd do it again. But if you're one of the people who feel stung by my defense of Mom, then-- as is true of the person who's worried about how he'll feel or act when he sees Mom-- I'd suggest putting ego aside. Forget about me; go be with her.
So that's where we are now. Mom is getting ready to leave us, and now is the time for everyone to say their final goodbyes. If you're unable to make the trip to be by her side, I understand. But if you're holding back from visiting Mom for reasons of pride or ego, then you should let those childish notions go and just see her. She doesn't have much time, which means you don't have much time.
Mom's current location (check this blog for updates if/when she's moved either to an institutional hospice or back to our house for homebound hospice):
Walter Reed Medical Center
Building 2, Ward 40, Bed 7
According to the ICU staff we met, Mom is accessible 24 hours a day. There's some debate as to whether there's a limit to the number of people who can be inside her berth at any given time, but we had three visitors at Bed 7 on Sunday: David, Dad, and me.
Depending on when you show up, you might see some or all of our family there. Mom needs your love, but we guys could probably use a few hugs, too. I hope that's not too forward of a request, especially after the above stern, finger-wagging lecture.
For me, Sunday meant waking up late after a decent night's sleep. Two friends and fellow congregants from our church, Mr. and Mrs. Doe, arrived at our door with food: a hearty soup, Italian bread, a salad mix, and cookies. Our thanks to the Does, whose food we ate (along with the food from Mrs. Burns and the Morrisons) later in the day for dinner. I regret not seeing our guests: I was downstairs, probably showering. Dad was the one who greeted them.
Our goal for the day was to see Mom, so Dad and I shoved off around 2PM. I had nearly emptied the van's gas tank after (1) driving home from New York, then (2) driving back into DC to pick Dad up. Before Dad and I struck out for Walter Reed Medical Center, we drove to Fort Belvoir to gas the van up (gas is usually about 20-30 cents cheaper on base). On the way to DC, we picked my brother David up, and once we got to the medical center, we saw that Sean was there. Sean left soon after our arrival.
Mom's new ICU berth proved to be larger than I thought. I had imagined something cramped, slightly bigger than a closet, in but fact there was enough room for three visitors (plus a doctor) to sit or stand in relative comfort. Mom's room was comfortably dark when we went in. Her poor eyes remained swollen; we were told that she was still receiving regular applications of petroleum-based ointment to reduce irritation and protect the eyes from over-exposure, and we saw for ourselves that, unlike in New York, someone had attempted to tape Mom's eyelids shut. The attempt had been only partially successful; Mom's right eye in particular has now become so swollen that it will probably never completely close again. A nurse came in to re-apply ointment and re-tape Mom's eyes; he, too, was unable to close the right one completely.
Mom herself was as still as death, but her hands remained warm. More to comfort myself than to comfort her, I again sat beside Mom and placed her left hand on top of mine, allowing her inherent warmth to radiate into me. For a while, I could fool myself into thinking that she had placed her hand there-- that it was her will, not merely the pressure of gravity, that kept her hand where it was.
Mom's vital signs were bizarrely good, though: heart rate 114 (high, but better than 140), blood pressure 122/58 (MAP = 78), pulse-ox 100 (David noted that, with the ventilator set for 80% oxygen, Mom might have been over-oxygenated; a respiratory tech later adjusted the machine downward), and best of all, respiration at 16 breaths per minute-- the lowest and calmest rate I had yet seen.
But Mom's serenity and her tranquil vital signs belied the fact that the top of her head had begun to look like the surface of a world that had suffered a global war. The tumor that had begun to rise through the hole in her skull was even more prominent, and red blotches, patches, and blisters were making their way from the top of her head down the left side of her face. Several things seemed to be happening at once: infection, lingering irritation from all those days spent with the helmet on, belated effects from radiation and chemotherapy, and possible enhancement of the tumor in new spots on her scalp. Even the nurse was unsure how to read all the signs, but on a gut level, I knew they meant nothing good.
The ICU is already viewing Mom as a palliative case: they're doing what they can to make her comfortable, but they're not giving her antibiotics or doing anything to prolong her suffering. Both her infections and her cancer are, I suppose, free to work their work on her, and it seems to me that we are, at long last, nearing the end. This is no longer a struggle or a battle with cancer; cancer and the germs have won, and we are merely witnessing the mopping-up.
Dad was, once again, in and out of the berth as he went about gathering information. He wanted to track down the social worker so he could talk with her about hospice options, but it was Sunday, so the social worker wasn't there. Dad did manage to take down some crucial phone numbers; he'll be calling people in the morning, and his hope is to have Mom scheduled to go somewhere-- home or to an institutional hospice-- by the close of business on Monday. Mom's actual move, if Dad is successful in finding and securing a hospice arrangement, will likely occur later in the week.
Dad had also brought along a pile of Christmas cards from various friends. He read the handwritten messages in the cards to Mom, asking me to decipher the Korean messages as best I could. One of Mom's old friends had knitted her a scarf. Mom will never wear it, but David took the scarf and drew it along Mom's right hand, allowing her to feel it.
Throughout our nearly three hours at the ICU, I did little but sit by Mom's side with my hand nestled under hers. Sometimes I shifted position and held her hand. Sometimes I stroked it. My brain didn't know how to reconcile Mom's organic warmth with her corporeal inertness. And the more I thought about it, the more I came to believe that Mom had already left us on the night between December 21 and 22. She had been there, in the office, to hear the death sentence handed to her by Dr. Boockvar from wherever he was in Florida; she had seen the crestfallen looks on Dad's face and mine, and later that evening, she had sat silently in her wheelchair, between spoonfuls of soup, and stared at me as I both sobbed my apologies to her for not having been able to do more, and begged her forgiveness for all my failings as a son.
That, I increasingly believe, is when Mom concluded it was time to look skyward and hitch a ride with the wind. There really was nothing more for anyone to do. With no hope from any medical corner, and with the cancer and the pneumonia raging within her, she may have decided-- at a primal, cellular level-- to stop fighting. For her family's sake.
But after spending eight months by her side, after following her bodily rhythms and feeding her meal after meal, after exchanging ten thousand hugs and going on who-knows-how-many walks in the local park, I feel almost telepathically linked to Mom. Her shutdown is now my shutdown, too. She's dying, and my heart is withering. As I wrote to my buddy Mike, I fervently wish I could magically take all Mom's cancer into myself and perish in her place. If such magic were possible, I'd use it gladly, no matter the cost to me. But that's never going to happen, and I feel there's no longer anything I can do except watch my mother die. When we left, I whispered to Mom what I had told her before in the New York ICU: "You can go anytime you want. It's OK." That was a lie, though: I don't want her to leave when I'm not there to see her off.
We three drove home-- Dad, David, and I. We had tested one route on the way up to Walter Reed; it struck us as rather long and out-of-the-way. The more direct route, which we took in the evening, seemed much shorter, but it also took us through the heart of DC, i.e., through a gauntlet of traffic lights. On a Sunday evening, though, the lights weren't a huge problem; we moved along at a good clip.
The ride back home was quiet. We dropped David at his place so he could pick up his own car and drive separately to our house. Dinner was "every man for himself," a smorgasbord of victuals prepared by others... and perhaps a harbinger of dinners to come as we lose, forever, Mom's savvy feminine touch at mealtimes. The rest of our evening was, as you might imagine, similarly quiet.
Sunday, January 3, 2010
Saturday, January 2, 2010
I got to Alexandria, Virginia by 3PM, but instead of going straight home, I had a late lunch with my brother David, who very graciously paid for his big brother. Dad and Mom arrived at Walter Reed in DC not long afterward. I got home from lunch around 4PM, and managed to unload the van and even begin unpacking before Dad called from the hospital to say he was ready to be picked up. I drove to Walter Reed and picked Dad up at the facility's Georgia Avenue gate (the regular 16th Street gate is closed on weekends); I didn't go in to see Mom. According to Dad, her new berth is tiny.
Dad told me that Mom had endured the trip about was well as could have been expected. Her vital signs suggested some agitation during the move, but once she was settled into her new ICU berth, she began to calm down. I was a bit worried to hear that her diastolic pressure was, at one point, over 90, but I'd seen her blood pressure climb even higher while she was in New York.
Pastor Jeri had coordinated with Mr. and Mrs. Morrison from church, as well as with Mrs. Burns, and all three fellow congregants arrived at our doorstep with dinner. My brother Sean had stopped over and, Atkins disciple that he is, he was delighted to see that part of the dinner consisted of rotisserie chicken, which is about as Atkins-friendly as can be. Dad, Sean, and I offer our thanks to Mrs. Burns* and to the Morrisons for their food, and we thank Pastor Jeri for coordinating the drop-off.
Dad's been going through the pile of mail we've received in our absence. While we were in New York, we had had to request that the letter carriers stop delivery and hold our mail at the local post office; David, who had originally come back to northern Virginia with the intention of returning to New York (all this was before we found out that Walter Reed had a bed for Mom), picked up the mail and even sorted it all for us. We've received a bundle of Christmas cards and a few gifts for Mom. Dad wants to read the cards to Mom tomorrow. Mom received a scarf from one of her long-time friends... it's a shame she'll never be able to wear it. Perhaps we can brush it over her fingers.
Tonight, we had a bunch of unpacking to do. I took care of the kitchen items, my own clothing and toiletries, and the "media centers," i.e., my two computers. Dad took care of his and Mom's suitcases and bags; he also combed through the mail, throwing away junk, keeping cards and gifts. We've got some "Sorry we missed you; you have a package" postcards from the post office; we'll have to retrieve those parcels on Monday.
As I worried would happen given all the precipitation in the DC area, my downstairs "dungeon" bedroom suffered some serious leakage. The room smelled dank and musty when I entered it, and I'm running a dehumidifier in there right now (it's right behind me as I type this). The dehumidifier will need a few days to take care of the problem-- a problem that has occurred many times before over the course of our residence here, despite our best efforts at sealing and drainage. The cause of the problem may lie in a cracked foundation: as Dad has noted in the past, the leaking often occurs right through the walls. Years ago, it also happened through the windows (the dungeon's windows are at ground level, slightly above eye level for me), but our new windows have taken care of ground-level leakage and seepage.
We're not done settling back into the house, but we're too tired to do any more tonight. We'll start again tomorrow.
*We've learned that Mrs. Burns's wonderful children aren't really children anymore: they celebrated their 14th birthdays today. Their actual birthdays are on Sunday, but Saturday was party day. Congratulations, Beth and Brian, on turning 14!
A few days back, I asked Dad, "So from now on, Mom will never be riding in the van again, will she?" Dad said yes, that's right. When Mom fell ill on the night bridging December 21 and 22, we had passed a threshold.
Since that night, I've been in and out of this hotel room a few times per day, which has meant a great many trips to the coat closet. Inside that closet hangs Mom's empty coat-- a garment she'll never wear again. Mom has reached a point where she now lies beyond our help: from now on, every time she needs to be moved, it'll be professionals, not her family, who do the job.
As I pack our possessions for travel back to northern Virginia this morning, Mom's empty coat is one of the items I'll be folding up and taking back with me.
Friday, January 1, 2010
Many thanks to my buddy Mike for coming up to New York to spend a few hours with our family. Mike's a busy father of three; it was good of him to take time out of his schedule to be here.
Mom's ambulance, which will take her from New York Presbyterian Medical Center down to Walter Reed Army Medical Center (WRAMC) in DC, will arrive for Mom at 9:30AM. Dad thinks that departure might not be until 10:30 or 11AM. He'll be waking up at 7AM and plans to be over by Mom's side by 8:30AM at the latest. I, meanwhile, will wake up at the same time, get myself ready, pack up the van with everything except whatever paperwork Dad needs, and check out along with Sean. We might depart as early as 9AM; Sean will drive separately. If we run way behind, we'll depart by noon at the latest.
Dad will ride with Mom down to DC; I'll drive alone to northern Virginia. It's likely that I'll arrive at my destination first; Dad thinks the ambulance will be legally constrained to drive more or less at the speed limit, whereas I'll probably be hitting 80 along with the rest of the traffic, barring traffic jams. Once I get home, I'll unload the van and prep it to pick Dad up from Walter Reed.
Mom will be placed in Ward 40, which is billed as the coronary care unit of the WRAMC. I'm not sure why she'll be there instead of the pulmonary care unit, but I imagine this has something to do with the availability of beds. She probably won't be there long: we need to decide whether she'll be moved to a homebound hospice situation, or to an institutional hospice. Right now, it's hard for us to see beyond Saturday.
I'd like to thank my buddy Dave for his private support and repeated offers of help. Thanks, as well, to Pastor Jeri for her support and to Pastor Kim for coming north to visit (even though I personally didn't see him). I've learned from Pastor Jeri that Mrs. Burns and the Morrisons will be preparing dinner for Dad and me. We appreciate their kind gesture. Unfortunately, we still don't know when we'll be home for the evening; Dad will likely have to work with WRAMC staffers on Mom's paperwork, and he might also want to linger with Mom in her new setting (as will I). 8PM is my best estimate for when Dad and I will finally be home. That might change.
The weekend will be mostly about settling Mom in and settling ourselves down, using the quiet time to plan our next moves. There isn't much left to plan; we're at the endgame now. Here on in, our only real goal is to keep Mom comfortable during her final decline, and to settle final arrangements.
Mom herself seems beyond caring at this point. She's only slightly reactive to stimuli, at least according to what we can see and feel and read on the various monitors. I have no notion of what her inner life is like, or whether she might even properly be called "conscious." As always, I can only hope that she floats in a comfortable fog, suffering nothing at all, closing her poor, swollen eyes as much as possible. Does she take any comfort from our presence, from the sound of our voices? Does it warm her heart, the way it warms mine, when I place her hand atop my hand? Or is Mom's entire existence now focused on the ruthless, mechanical rhythm of her ventilator, and the painful intrusion of the other tubes leading down her throat? Her face still registers pain when she gets suctioned. I feel that pain-- perhaps only bluntly and vaguely, but I feel it.
Mom doesn't deserve to suffer. If I could take her place, I would, but I can't. All I can offer instead is this simple wish: may her mind retreat from all the world's noise, and from the ugliness of the medical process. May she know some form of peace before the final, permanent stillness.
My buddy Mike is on his way up to New York as I write this. Dad's at the hospital, nailing down tomorrow's departure time (for Mom's ambulance) and making other arrangements. My brother Sean just stepped out of the hotel room for a few moments, and I'm awake for no reason I can fathom.
We'll be leaving New York tomorrow. In theory, I can start prepping for departure today. There are no more space considerations for the minivan: I'll have so many open seats that, even if we went on a shopping spree, I'd have plenty of room for extra bags and boxes. When we came up to New York, interior space was a problem, but now, for the return trip, I'll be the only one in the car: Mom and Dad will both be in the ambulance going down to Walter Reed. Sean drove up separately, and David-- who had planned to return to New York on Sunday-- is already in the DC-Metro area and can just stay there. So along with the van's rear storage space (after folding over its rear seats), I'll have three extra chairs on which to place everything. We've also eaten up the majority of the supplies I'd brought with us, so there's actually less to bring back.
All in all, there's really no stress about prepping for tomorrow's trip, so I plan to take it slowly.
Happy New Year, all.