Ambiguous

Not long ago, in one of those impromptu deep discussion with a teenager that you don’t see coming, my 13-year-old said “everyone acts like nothing has happened to us.”

The 13-year-old in question is known to be prone to exaggeration and fiction. When he was in pre-K, for instance, he’d regularly come home and regale me with stories about how the teacher had taken him for a haircut that day, or to McDonald’s, leaving the rest of the kids back in the classroom to fend for themselves.

This was such a pronounced character trait that I took to calling him the novelist behind his back. (Sorry not sorry, kid.)

Nine or so years later, he still insists things that didn’t happen did happen sometimes. But, in this case, he wasn’t wrong.

We’ve been watching his father decline due to Parkinson’s since 2016. It’s reputed to be a slow-moving disease. But that was not our experience. Physical decline happened fast, as did dementia, which affects a large percentage of people with this disease. Anyone who thinks it’s just a tremor has swallowed the Michael J. Fox Kool Aid.

The physical decline was heartbreaking and scary to watch. The mental one was, as well, but it was also more complicated.

Dementia isn’t absolute. Or at least not in the coming on phase. The person is there, but not. Same, but different. Looks like the person you know, but isn’t. It’s gaslighting extraordinaire.

And that’s the subtle stuff. There’s also the uglier side, the sundowning, the tempers. And, as you might imagine, there’s complicated feelings toward the person exhibiting these symptoms. Is it them, or the disease? Does it matter? Can you not be angry if someone didn’t mean it or couldn’t help it?

These were salient questions for all of us.

It happened slowly and then fast, and the kids, because I worked full time, needed to work full time, were often alone with the situation. Eventually there were aides to buffer the asks, the demands, the temper. But they weren’t there around the clock.

My kids went through a lot. So did I. The rest of the world, even those in the know, were mostly oblivious to just how awful it was. The pandemic isolation also complicated this phase. Let me just say, there was no cozy knitting, no glad-we-all-have-some-down-time together, stuff happening in my family unit during lockdown.

The fact that no one saw what we were going through, when they should have, and when we were all in lock down, made it hard for us to register and process, too.

There’s a name for what we’ve experienced. I’ve written about it before, in the context of sibling loss. It’s called ambiguous loss. It’s a concept named by a psychologist named Pauline Boss to describe losses that are not literal deaths and thus are not acknowledged as losses. Soldiers lost in war whose fates are never known. People who are literally swallowed by Alzheimer’s or dementia.

Though the survivors of these losses have most definitely lost a person, not to mention a family structure and way of life, society does not recognize it as a loss. Ritual and support are reserved for death. That leaves survivors of ambiguous loss to muddle along, confused, frozen, with their emotions unprocessed, trying to make sense of the loss that is not called a loss and the way their lives are and are not the same.

I wrote about it in the context of sibling loss because bereft siblings, to those in the know, are often called “the forgotten mourners.” People see the loss of a child in family, regardless of the age, as the parents’ loss. Surviving siblings are often greeted with phrases like “you have to be strong for your parents, they’re going through a lot” and “how’s your mother?”

As a result, siblings are trained to think the loss is not theirs, and get stuck in their grief. I’ve heard from senior citizens, after they’ve read my book, who have realized for the first time that the loss has happened to them, too. Better late than never, I guess. But frozen grief is awful and disabling. It’s years lost. It’s sad.

Ambiguous loss feels exactly the way my son described it. No one registers it as a loss, so you can’t, either. You do what’s expected of you. You soldier on as if nothing has happened.

As a coping skill, ignoring things only tends to only work so long. It has an expiration date. In our case, we’re dealing with the fall out now.

What pains me is that I know this. I’ve even talked about it with my kids, in passing. But I didn’t do the things that should have been done, like outright naming it as a loss when it was happening, and when Paul finally exited the home and entered facility.

I guess I was too in it to be also managing it. But listening to my kids, seeing them trying to pull it together now as school and life demands of kids their age, I am pained that I did not see it, did not act on it more definitively, sooner.

While everyone takes off their masks, and ostensibly rejoins life, my kids are gamely trying to rejoin life with the relief expected of them, getting back to “normal.” But there’s not a normal to get back to. Not for us. Or not yet. We are getting there, though it often does feel as if we exist on an invisible island, slogging through on our own.

I’m writing this as a PSA, really, for those who might be experiencing this, to name it for them—ambiguous loss--and to those who see it around them, and might be able to do someone a solid by naming it for them.

I think it falls into the category of if you see something, say something.

I’ve written about grief and loss a ton in the context of my brother’s death. And yet, I couldn’t spare my kids or myself this one, somehow.

It’s humbling.

Bubble

I had another Bubble-explainer experience last week.

Which is to say I had to explain my backstory to someone and the most shorthand way to do that was to reference “The Boy in the Plastic Bubble,” the 1976 movie that was based, in part, on my brother Ted’s story.

Then I guiltily explained, as I always do, that my family had not authorized the movie, that my brother hated being known in the press, and that it also wasn’t a very good movie. Also, that it made me forever kind of hate John Travolta, though I suppose it wasn’t really his fault.

Years ago, when I was just starting out in journalism, I was an editorial assistant at The Washington Post. There was a well-known sportswriter there who had a regular column and was well known to be a lazy AF reporter.

So lazy, in fact, that when he wanted an extra opinion to throw into his columns, he’d poke his head out of his glass walled office and shout a question across the newsroom to another reporter, named Martha. Her quote would then appear in his column attributed to “my smart friend Martha.”

All us underlings who witnessed this rolled our eyes. But secretly, I’ve been dying to steal his MO for years.

And I had the opportunity to do so after I wrote a first draft of this post, because my friend Maureen, heretofore to be known as my smart friend Maureen, texted me after I finished the first draft, read it for me, and rocketed back a bunch of questions.

She asked me if I referenced the movie to keep Ted’s memory alive. To which I think the answer is no. That Boy in the Plastic Bubble thing seems to have a life of its own, judging by the pop cultural references. Travolta’s wistful performance in no way recalls my brother.

I use it to quickly shorthand who I lost and how and avoid the feeling of repeating myself telling a story. Anyone who has a personal backstory like this knows how boring you can start feeling to yourself telling it.

The price of my sleight of hand is a little guilt with regard to my brother.

Here’s where my smart friend Maureen got very smart.

I started this blog project early on during the beginning of the pandemic to explore the idea of how my brother survived what the world was then living through, in terms of isolation and fear of infection, with his sanity intact and as an amazing, productive, creative individual.

But now that we’re all out again, not wearing masks for the most part, it doesn’t seem as relevant.

So, I’m not sure what I’m writing now and if I should continue. Or whether the angle of the blog needs to change. I’d really like to work on another book project, or podcast. I get bored when I’m not creating something. Bored and depressed. This is self-care. But it would be nice if it was circling a point.

I shared this with Maureen.

Maureen texted: Your life is in a state of so much uncertainty, so much is demanded of u. Your brother, ironically, didn’t have to do anything but show up and live. What happened to him was outside his control to a large degree, except what was asked of him. Which was monumental. And also simple in some ways.

I’ve noticed this in others, not necessarily myself. That the person with the illness, while they have the illness to contend with, have a more direct role in the story and a clear job. Survive. Get better. Those of us on the sidelines, not so much.

While no one would call my brother’s life in a sterile environment easy, it was interesting to register (again) how hard it was living in the undefined presumably fine space of the well sibling. (Spoiler alert: I was not fine.)

The other part of Elizabeth 101, which many in my inner circle are familiar with, and which I’ve written about, is that I’ve been shouldering a biblical level of family crises these past few years.

My recent biblical episodes have fallen more in the realm of caretaker roles (yes, plural). And, as in the sibling experience, I’m often presumed by many family, friends, and healthcare professionals to be fine or to have the easier route. I get complimented a lot on my strength. Which, depending on who it comes from, can be annoying. Because, as others who have been in this position know, it’s not like I have had much of a choice.

I could give you a spoiler on this one too, but you’ve probably already seen where I’m going with this. Okay, I’ll say it. Not fine.

Also, my brother had a crew show up every day, in the form of family and friends and nurses and doctors, to witness and support his effort. With a few exceptions, I’ve been doing this alone. “It’s like, where the f*ck are my people” she wrote.

It's mind boggling to me what we're expected to do in silence, under the cover of night,” wrote Maureen, who is no stranger to difficult times.

But the truth is, maybe looking at my brother as a guide for all of us, during the pandemic, was a red herring I dangled in front of myself until I could really see I was just writing about myself and my childhood yet again. Maybe Ted isn’t entirely the teacher here, or rather the only piece of that story to learn from. Maybe it goes back to me, surviving on the sidelines again.

It’s amazing to me that the answers always seem to come back to that backstory, in some way. Maybe from a different angle or lens. But always there. And the irony is, I’m bored with it. Go figure.

For now, I think it comes down to this, though I thought I had learned this lesson already, I’m still learning to be the center of my own story.

Legacy

A couple of months ago I met my friend Heidi (who I often refer to as “my sibling loss friend Heidi”) and her sister, Rebecca, for dinner in the Chelsea neighborhood of Manhattan, where I live. They were going to an art show beforehand, in the neighborhood—Chelsea is small gallery mecca—and invited me to go, too. But I had to bring Luke to the orthodontist (such is my life) so we settled on the dinner plan instead.

They were already at the restaurant when I got there. There’s a law of lateness, at least for me, that basically says the closer something is to me the closer I’ll cut it getting there on time. I.e….I was ten minutes late. Before I could even sit down, Heidi said “You have GOT to see this show.”

It wasn’t because of the art, though it was, by their account, amazing. It was because, they said, the exhibit was also a sibling loss story.

Heidi and Rebecca lost their brother, Scott, to a car accident about as long ago as I lost Ted. Their family founded and runs a foundation, Open to Hope, geared toward helping people through loss. And Heidi is a therapist who specializes in traumatic loss. She also teaches classes related to grief and traumatic loss at Columbia University’s school of social work. I tell you this by way of introducing her and Rebecca, but also by way of saying they know a sibling loss story when they see one.

The exhibit was of the work of Jean-Michel Basquiat, whose work I did not know but all my friends who know art do—in the way people know Warhol and Van Gogh. Which is to say, the guy is pretty famous and I just don’t know the art world very well.

My inexpert summation, largely based on Google and info on the exhibit’s website is that Basquiat was born in Brooklyn in 1960 to a Haitian father and mother of Puerto Rican descent. He was a precocious and prolific artist, even as a kid, and his work ranges from the personal to political.

Because I know that description is inadequate, and I have zero experience describing art, and I’m new to his work, I’m going to lean hard on Wikipedia and the exhibit’s website for a better description…

From Wikipedia:

Basquiat first achieved fame as part of the graffiti duo SAMO, alongside Al Diaz, writing enigmatic epigrams in the cultural hotbed of Manhattan's Lower East Side during the late 1970s, where rap, punk, and street art coalesced into early hip-hop music culture. By the early 1980s, his paintings were being exhibited in galleries and museums internationally. At 21, Basquiat became the youngest artist to ever take part in documenta in Kassel. At 22, he was one of the youngest to exhibit at the Whitney Biennial in New York. The Whitney Museum of American Art held a retrospective of his artwork in 1992.

Basquiat's art focused on dichotomies such as wealth versus poverty, integration versus segregation, and inner versus outer experience. He appropriated poetry, drawing, and painting, and married text and image, abstraction, figuration, and historical information mixed with contemporary critique. He used social commentary in his paintings as a tool for introspection and for identifying with his experiences in the Black community, as well as attacks on power structures and systems of racism. His visual poetics were acutely political and direct in their criticism of colonialism and support for class struggle.

From the exhibit (entitled King Pleasure) website:

King Pleasure contains “200 never-before-seen and rarely shown paintings, drawings, multimedia presentations, ephemera, and artifacts tell the story of Jean Michel from an intimate perspective, intertwining his artistic endeavors and his personal life, influences, and the times in which he lived.”

I’m back…

Here’s where the sibling loss piece comes in. Basquiat died of a heroin overdose in 1988, at 27, leaving his family, which included his father, mother, and two younger sisters, bereft and with the hefty responsibility of managing the legacy he left behind. And when I say legacy, I mean not only his art, which was tremendous, but his imprint on their lives.

His mother, per Wikipedia, suffered from a mental illness and began living in institutions when he was about ten. I can’t tell if she is still alive or not. His father managed his estate and work until he died, fairly recently. There’s a plaque on the wall in the exhibit somewhere which, I think, sorta speaks to his father managing the actual estate Basquiat left behind, from a legal and financial point of view, but not so much his legacy as an artist. (Apologies to the family if I got that wrong…there was a lot to take in at the exhibit and I should have taken pictures to collect details…maybe I’ll go again.)

Now his younger sisters, Lisane and Jeanine, manage his work.

I have not been through previous exhibits devoted to Basquiat’s work, so I don’t know how they were presented.

But, you can’t walk through this exhibit and not feel this man’s legacy not only as an artist but as an older brother. Well, maybe you can if you haven’t lost a sibling. But if you have, wow. Heidi and Rebecca were right. Sibling loss is all over this show.

It’s the most personal exhibit I’ve ever seen. And by personal I mean framed through the lens of his sisters’ memory of him, their shared childhood, and what influenced him and who he influenced, from their point of view. Part of the exhibit includes a recreation of the Basquiat living room and dining room of the 1960s and 70s.

I’d have to go back and count the plaques on the wall to say this for certain, but I’m probably within the bounds of accuracy to say that A LOT of them were either written by his sisters or quoted them. There are numerous videos, featuring a cousin here and there, a couple people from the art world, but mainly his sisters, telling stories about him. Some are art related, some are not.

It got me to thinking about legacies….

What the people who go before us leave behind. What stands to represent us. And how, often, the personal is left out.

I wonder if Jean-Michel really knew how lasting his work would be. Can any artist really comprehend, even if they see fame in their lifetime, that their names will become recognizable even to those who have never really seen or heard their work? I know the name Bach, but I’m not sure I could name one of his musical works or hum one.

And the personal legacy…just as deep, within those we leave behind. Do any of us really appreciate the imprint we leave on others?

And what about when the public and personal legacy left behind merge, as it does in the Basquiat show? When we see the famous artist as a person…a person who was not only gifted and compulsively creative but encouraged his little sister, then a toddler, to jump off the top of a wardrobe holding an umbrella in effort to emulate Mary Poppins?

Years ago, in college a William & Mary, I looked up some personal info about a writer we were studying in class (I no longer remember who it was). I was fascinated by how it might have influenced the writer’s work. But when I raised my hand in class and mentioned it (I was not a big hand raiser, so this was not a small act) the teacher rolled his eyes and told me that the personal was basically irrelevant and that the work should be interpreted on its own. He made it sound like a disservice to the writer to look at it otherwise.

Similarly, when I was researching The Empty Room, my book about sibling loss, I interviewed a psychologist who had written one of the few scholarly books on sibling loss. She told me she had lost a sibling. But it was never mentioned in her book, not even in the intro or prologue. And she told me she normally kept mum about it and didn’t want it widely known.

Apparently, in that world, having personal experience with something, or rather letting it be known that you do in the context of your work, compromises your perceived ability to be objective. She wasn’t the only researcher I encountered like that. In fact, I now basically assume that any researcher who has done a study on sibling loss, or written a book about it has personal experience with it that they are not publicly claiming.

Anyway…

All of this also got me thinking of how hard it is to share legacies, if someone was famous. My brother was not famous for anything other than his illness and the living circumstances it forced upon him. But the press loved his story, and wanted it. My brother did not want the notoriety. My parents tried to protect him, but stories emerged anyway, and his story was immortalized in pop culture forevermore when it was merged with another boy’s, who had a different illness but also lived in a sterile room for the rest of his life, in the movie The Boy in the Plastic Bubble. (We did not give anyone permission for that story, fyi. Somebody in the hospital talked.) To me, he was my brother, not a public figure. And I notice when people who were not close to him want to own a part of this story, because it’s holding on to something or someone notorious. And to be honest, I don’t like it. I don’t like sharing him.

I wonder if that is how Basquiat’s sisters feel.

You get that sense in the exhibit. I mean, he’ and his work are so famous they don’t have much choice but to share him. But they make their ownership of him as a human being pretty clear, I think. There’s a video that plays on three screens as you make your way out of the exhibit. It’s the same video playing on all of them. It’s one of his sisters, and among her parting words are something to the effect of….other people see all the art and everything he left behind…but ”I just miss him.”

Maybe we don’t want our legacies framed by our loved ones after we’re gone. Maybe Basquiat would prefer his work be shown without all of this context. I don’t know. My brother might be really pissed about how much I talk about him. I’ve said it before and I will say it again…the refrain “get a life” often rolls through my head when I wonder what my brother would make of much of my writing.

In that case, we all ought to be really careful about the documents we leave behind stating our wishes about how the ones we leave behind are allowed to share our stories, I suppose.

Where am I going with all of this? I don’t know. All I can say is, the exhibit stayed with me, still stays with me, and that’s not typical for me. Walking through it, yesterday, I felt the loss of the artist and the person, and I felt his sisters’ pride and love, and their pain.

It was…fascinating, and more than just a visual experience.

I may go back. And if you’re in NYC, I highly recommend going.

Closure

Years ago, when I was researching The Empty Room and collecting books, movies, and memoirs that dealt with my subject as a way to immerse myself in it, I stumbled across a documentary called “A Kill for A Kill: Witness To An Execution.”

It’s the story of the Kelley family, of Houston, Texas. Jim and Linda Kelley had three children, and they all worked in the family business, The Golden Nugget Pawn Shop. On August 29, 1988, a man named Leo Jenkins walked in to rob the place and killed the two elder of the kids, Mark, 25, and Kara, 20, in the process.

The documentary tells the story of the family and legal system’s attempt to bring Jenkins to the electric chair.

At the time, I was watching to see the experience of the surviving daughter, Robin, who was the youngest sibling in the family, I believe. Part of the exercise of witnessing sibling loss in these scenarios is to see if their loss is seen, in the way the story is told, in the way other people treat it, in the way the subjects see themselves.

I didn’t get a lot of that in this documentary. Her story was not really explored, as I recall.

But what I remember more than anything about that particular documentary, was that, near the end, the family is filmed walking in to watch the execution (which is not filmed) and ends with the family filing out. I mean, possibly there’s a little bit more after that. It’s been years since I watched it. But not much.

I felt…outrage.

Not because of the death penalty…which is something that sincerely baffles me as to the right or wrongness of it. I know I’m supposed to have a strong opinion about it. But, honestly, I feel like, not being in the position of a murder victim’s family, I am not in a position to judge.

What outraged me was that it seemed like the movie ended on a note of…mission accomplished…for this family. As if, with this death, there would be closure. That it would stop the pain of their horrible loss. Or at least ameliorate it somehow.

I’ll be honest, this idea of closure, the false-promise of it, is one of my pet-peeves.

I’m not really sure when I started to notice that word creep into just about any story about something difficult someone faced. Someone needed closure. Someone got closure. Someone sought closure. Once I noticed it, I saw it, read it, heard it…everywhere.

What the hell is it, really? To me, it’s a promise, a false promise, that loss finishes. That it can be neatly sealed away.

The false promise that knowing how someone died, or answering some question, or even putting someone who has committed a horrific crime to death, will put an end to the grief of losing someone.

“It’s as if grief is a can of peas you can seal and put on a shelf,” said one surviving sibling I interviewed for The Empty Room, about closure. (He didn’t like the word any more than I did.) He’d lost both his siblings, an older and younger brother.

Closure is fake. The grief after you lose an important person in your life is life-long, and life altering. It will change in nature, in intensity, in what triggers it, in how you integrate it into your life, perhaps. You will go on. But it does not go away. That’s just a fact.

Most people far enough into the journey of life after loss figure this out. We even figure out that it makes no sense that the psychic imprint of someone who deeply shaped us would just disappear, like a handprint in memory foam. And we don’t want it to, really. To lose that imprint altogether, that would be the real loss.

But man, does it sound appealing, at first. “When will it end?” asked one woman I interviewed, who had recently lost her only sibling, her sister, overseas. “When will I get closure?”

Promising closure, or implying it, is to give people, especially those new in their grief, yet another obstacle to grapple with.

I so wish that word didn’t infuse our vocabulary.

When I watched this documentary, I thought this family had been sold a false bill of goods—the promise of closure if the murderer was put to death—if they could just get him to the electric chair. Years of their lives were spent in the pursuit of it. Years in which they could have been healing, integrating the loss. Instead, I thought, they were encouraged to pursue the false hope of closure, of the end of their grief, through the electric chair.

The real story, I thought, as I watched that movie, begins now, as they leave that execution chamber. I wondered what they felt on the other side of that…the other side of that false promise. I’ve wondered for years.

It’s only now, in looking up reviews of the documentary, that I see that Linda Kelley was actually an activist on behalf of the families of murder victims. That she actively sought out this execution and the right of families to witness them. So she actively pursued this form of “closure,” it wasn’t foisted upon her.

I still wonder how the story of her loss unfolded, after it. She died in 2017, per Google. She was an activist and not a reserved woman. The story is probably out there. I want someone to do that documentary. Her surviving daughter I think, also per Google, is a psychic in Arizona. I want someone to tell that story, too.

Maybe I will.

Tattoo

For ages now, my friend Bri and I have been talking about getting memorial tattoos, i.e. tattoos that memorialize someone who has died.

In our cases, they would be my brother, Ted, and her mother, who died of breast cancer when she was five. We’ve talked designs and locations. She has scoured Instagram for artists and made queries. And just when it seemed like it would all be too complicated—not the least so because she now lives in L.A.—it all came together.

Bri was in town visiting family last month. She called me up one day and asked if I was busy the next Thursday and when I told her I didn’t have anything particularly pressing on my calendar she said “We’re getting our tattoos!” Or something like that. I might be taking liberties with the quote.

I’m not sure when I became aware of memorial tattoos as a genre. I mean, I’ve seen people’s names and birth and death dates printed on various people’s bodies forever. But it didn’t quite resonate for me that it was a thing until I went to the annual meeting of Compassionate Friends a few years ago and there was an actual session on it, run by a brother and sister who had matching tattoos in honor of their sister. I believe their mother had one, too.

I was, of course, intrigued. And then quickly overwhelmed.

How did you pick a design? THE design? What was right to capture a life? What if you made the wrong choice? Wrong choices seem to be an inherent problem with tattoos anyway. Most of my friends who have them can point to a few wish-I-hadn’t-gotten-that-ones. I didn’t want a dud, especially linked to my brother on the grounds that that would a) suck and b) he’d kill me if he were able.

And then, how did you find the right artist? This brother and sister duo said something about checking out artists on Instagram, which my phone dislikes (long story).

For eons, it seemed, I was stuck on what to get. A likeness? No, too much could go wrong and it felt weird. I’ve seen too many hideous face-gone-wrong tattoos stories in my Facebook feed (and I always click). Initials? Nah. Dates? Nah.

And then one day I was visiting friends, and my friend Diane’s husband (hi, Mick!) said, “Well, what did he love?”

The answer was so obvious.

His Les Paul gold top. Anyone who knew him had seen him, sitting just inside the entrance to the laminar flow room, on a pull-out bench, guitar on his lap. He loved that thing.

It’s been a game of which artist could reproduce it ever since. Not easy. It would be intricate. Bri’s was easy—she wanted her mom’s signature in her handwriting. The guitar, however, felt…complicated…and like the same artist wouldn’t be into ultra simple and ultra complex. And we wanted to go together.

But then we realized the guitar could be spare and single line, too, as long as it captured the basic personality of it. I also realized I prefer the spare single line style. Problem solved.

On the designated Thursday, we trained out to Williamsburg (not that one, college friends, the one in NY). It was great. The place was…high end. (Bri: “We picked the bougiest place ever to get a tattoo.”)

We loved Uno, the artist. She looked at pictures of Ted’s guitar and played around with a few drawings with me, scaling it in size, drawing it with and without strings to see if it made it less busy, re-drawing the knobs, picking a spot on my inner arm that she thought would work…which was different from where I would have put it, but better.

Because the lines were fine, the needles were small and it didn’t really hurt. Bri and I chatted throughout and went out to lunch afterward. It was kinda like going for a slightly more involved pedicure.

I love the tattoo, but also (hoky alert) loved sharing the experience with Bri, who is one of my grief touchstones, too. Also, Bri and I used to work together. In fact, I hired her. And she tells me we started talking memorial tattoos during the interview.

“I was like, I’m never going to get this job,” she now says. We are both over-sharers, or maybe just overly up front, I guess, because it never occurred to me not to hire her.

When I got home, I texted a picture of my arm to Marc, my brother’s guitar teacher with the words, “recognize it?”

He answered immediately: “Yes, Very Cool, Les Paul.”

Mission accomplished.

Resilience & Reinvention

Recently, on a Monday holiday, I was minding my own business, having lunch by myself, when the opening lines of Dante’s Inferno rang in my head.

“Midway upon the journey of our life

I found myself within a forest dark,

For the straightforward pathway had been lost.”

I thought, where the hell did that come from?

Then, I sat with it for a minute, to see if it would come to me.

It did, in bits and pieces. Enough so that I went and got a yellow legal pad and pencil and started taking notes.

I love to start pieces of writing by hand. There’s something tactile that I love about the feel of pencil gliding across paper.

But I digress.

The fact that I had the time to sit with this quote for a minute, to ask why it had appeared whole, in my head, is more revolutionary than you might think.

It’s been a long time since I had much time to sit quietly and listen to what my brain or my intuition was telling me.

The truth is that I have spent the last six years or so in a state of slow burning crisis, interrupted, often, especially lately, by intense ones.

About six years ago, Paul was diagnosed with Parkinson’s Disease, and began what turned out to be a rapid descent into physical and cognitive disability. So much for a slow moving disease. He chose not to be public about it, and, as a result, I told only a few of my inner circle. Because of this, what I now think of as something of an invisible cage, I have written about it only obliquely, referring to it as basically stressful stuff going on my life.

But it was more than garden variety stress.

I can’t speak to how difficult it is to have Parkinson’s. I can speak to the role of the caregiver, and, sparing you the details (you’re welcome, I hope you never have to learn) I can give you the plot: it is devastating.

The last six years, for me, have been full of trauma, triggers to past trauma, loss, the crisis upon crisis that goes with attempting to manage someone with a chronic degenerative disorder, and, also, growth, regrouping, and resilience.

I’ve been flat out working, caregiving, taking care of kids, running a household, fielding other crises (I’ll spare you these details, but let’s just say the universe never fails to deliver) for so long that I have forgotten what it feels like to not be in a state of crisis, to think, to listen to the thoughts in my own head, and to pause, even, to write them down.

Recently, Paul moved to a facility that could better handle his needs. I was at my limit. Beyond my limit, physically and emotionally. So were the kids.

And though life has not been without crisis even with him gone, recently, there are more and more extended moments of…I don’t have to do anything.

There are plenty of should dos. I should do the laundry. I should enroll Luke in camp (he doesn’t want to go). I should clean and de-clutter and go through the mountain of mail that has cascaded from my desk to the floor and probably has a lot of unpaid bills entombed within it.

But, I don’t have to. Not really.

I’m trying to take these moments to experience the quiet, and my own thoughts, and to re-group and figure out what I want to do now. Not what I should do. What I want to do. And on a level that’s not just for the next hour, but for the future. What do I want now?

Enter Dante.

I mean, give it five minutes (I did) and the quote, and why it appeared, wholesale, in my head, are pretty obvious, no?

I don’t usually have five minutes. Today I did. And I took them.

They were not a comfortable five minutes though.

I’m acutely aware that I now lack ease with downtime. It feels foreign, disturbing, and scary. It also feels lonely, and like free-fall. Which is odd, because I’ve always loved being alone and in my own head. I’ve always been fine with my own company.

Now, I guess, I’m a stranger to myself. And I have all this awkward ice-breaking to do, getting re-acquainted.

It has occurred to me, many times, over the past several years that, while it’s freaking biblical that my life should be so heavily laden with such difficult situations—Ted, and now this—that I had I not experienced the first one I would not have been able to cope with this one.

Not that experiencing Ted’s illness and death miraculously anointed me with resilience and coping skills. I made the choices that made that happen. But because of those experiences, I know that I can stay standing despite what the universe hits me with (so far). And I know that if I don’t have the skill set yet for whatever is in front of me, I can learn.

I’m kind of tired of learning, if I’m being honest, but I know I can.

Which puts me in mind of the oft-quote lines from Leonard Cohen’s song “Anthem”:

There is a crack, a crack in everything

That's how the light gets in

Cliffnote version: My brother’s illness and death could have made me a fragile and broken person. Instead, it gave me the strength to endure more. He’s the source of my crack and my light. And if he were here, he’d probably tell me to get a life and stop talking about him so much. (But he’s not, so I win.)

Also, full disclosure: I’ve never read all of Dante’s Inferno and I’m not a Leonard Cohen fan…I just know a good quote when I see one.

Anyway.

As I sat with my disquiet today, I remembered something. I remembered the horrible time after Ted’s death, when we were dealing not just with the grief of his absence, but the discombobulation of re-inventing our lives.

For eight-and-half years, the entire family had revolved around Ted’s illness and his hospital room. My mother went to the hospital every day, came back, and then we all went back in after dinner. We were there longer on weekends.

My brother, by necessity, was the hub, and we all circled around him. Then he died and we were all spinning, loosened from our mooring, trying to re-invent how to be in our days.

The circumstances we were living with here were not exactly the same. But Paul’s illness did require constant management, as did orchestrating kids’ needs and work, around it. And now we are adjusting to what’s on the other side.

This sense of disorganized time, of not knowing how to be without my time organized around the crisis of a serious illness that trumps all else, that feels familiar. Forest dark, indeed.

It’s not fun. It’s no place I wanted to visit again. Who needs to do this twice?

But it’s necessary. And it’s good. It may be a freaking murky path, but it’s the right one. And if I’d ever actually made it through more than a few pages of Dante I could probably add a little more literary insight right about here, but alas…no.

Today, sitting at my kitchen table, I felt a dawning sense of hope and excitement, that this new sense of space and time was mine to own, and that I could re-invent it any way I wanted to. I remembered what it meant to feel…normal. To dare to want something, to plan for it.

As I sat there, I flipped to a fresh sheet on my legal pad, and at the top, I wrote: “How do I plan to rebuild my life?”

Answers, as you might imagine, were not immediate. There are glimmers.

I’m giving it a little time.

Living the Weeble Life

Aren’t they hideous?

Well, I got life-d again.

As in, life turned into madness for a while and threw me off my writing game. Off a lot of games, actually. And once again, I find myself starting over….not just with blogging, but with all my routines, both work and personal. And while I find this incredibly frustrating, it is starting to dawn on me that this is the way it is, life. Maybe it’s just an illusion that everyone else’s life stays steady while mine looks like the EKG of someone in a dubious state of cardiac health.

Maybe the interruptions, the starting over, are part of it. Maybe there’s a certain endurance exercise in this, the getting blown off course and finding a way to step back on, or in, again.

It reminds me of the many times I’ve attempted meditation and been told that it’s normal when your mind wanders, that the task is not to prevent that, because it’s not possible, but to rein it back in again when it inevitably drifts.

I was doing my morning pages this morning--the one thing I love most and still continue (off and on) from Julia Cameron’s book about creativity, The Artist’s Way—and I found myself writing about all of this and trying to recall what I have done in the past to return to life as I know it in these circumstances. The answer was that, after I beat myself up a little bit (trying to lose that habit) I pick myself up and throw myself into something I love, anew, or learning something new. It gives me hope and a sense of mission. And It’s a way of reminding myself that the world is always an interesting place, with lots to offer, and infinite opportunities for learning and growth are out there for me, if and when I choose them.

Years ago I took a small course offered by a psychic medium on the upper west side of Manhattan. I’d had a reading with her in which she told me something related to my brother and his death that no one could have known, and it left me with both a sense of peace and an enduring curiosity about what’s on the other side of life.

And as part of one conversation, she told the class that people on the other side who came to her who had committed suicide always regretted it, almost instantly. And she said something—and I’m not sure if this came from her or the voices of those who had passed on this way—that has always resonated with me: “It’s a privilege to be here.”

I think about that a lot when life, shall we say, intervenes.

And I also, I realized (also in the course of the morning pages), absorbed the same kind of message from my brother during his years in the hospital.

Life certainly knocked him off course, first when he was 9 and diagnosed with aplastic anemia and ended up in the bubble room at the hospital. And then over a series of events during the ensuing 8 ½ years—infections, plummeting blood counts, isolation, etc. etc. etc.

And yet he went on. He was not immune to being pissed off or upset. But he always got back up, so to speak, to play his guitar, to read (and often memorize) a book or poem, to write. I don’t know how he was able to summon that fortitude or wisdom, but he did. And I’m pretty grateful for his example right now.

For some reason the most inelegant image popped up in my head as I thought about this…the memory of a toy from my childhood (that I never owned)—Weebles. They were goofy, egg-shaped characters that didn’t fall over because they were weighted in the bottom. And they were constantly advertised on TV, with a catch-phrase so apparently ear-wormy that it’s still ringing in my ears all these years later: Weebles wobble but they don’t fall down.

So, yeah, I guess I’m wobbling, but I’m still standing, and trying to get back on course…again.

Gravitron

A couple of summers ago Luke talked me into going on an amusement park ride that I had otherwise successfully avoided for my entire life. We were at Funland in Rehobeth Beach, Delaware. He went on the ride first with his older brother and thought it was so great he came to drag me on for another round.

I dutifully got in line because, what else are you supposed to do when your 10-year-old desperately wants you go on a ride with him? But inwardly, I thought, “Oh shit.”

Let me just say, there’s nothing about the Gravitron that appeals to me. If you don’t recognize the name, you’ve definitely seen the ride. It’s an ubiquitous carnival ride. A round, flying saucer kind of thing. Inside, it’s like being inside a drum. You’re instructed to lean against the wall. Then neon lights flicker on in short order, the door slides closed, and you spin….so fast, and so hard that you’re pinned, powerless, against your allotted space on the wall and the floor drops out beneath you.

I’m not sure if it was the prospect of the spinning that freaked me out or being rendered powerless and immobile. As we spun, I had a vague memory of a movie in which someone throws up spectacularly on someone on this ride.

Well, spoiler alert: I survived (without puking). Other spoiler alert: Luke has now moved on to big rollercoasters, so it’s not like I’m off the hook. (I think The Hulk is in my future. Pray for me, and for strong seatbelts.)

Anyway, I was reminded of the Gravitron recently, when contemplating the hard, unavoidable crap in life that you can’t avoid, the kind of stuff I alluded to in my last post. Illness, mortality, you know the drill. The kind of things that you can’t change and, you just know, with a deep sense of foreboding, that you’re going to have to face. No outs. It’s just going to unfold in front of you, and you’re pinned, enduring it, searching your psychic pockets for whatever strength you’ve got to get through it.

Until that moment, I had happily relegated my 60 seconds on the Gravitron to a distant never-doing-that-again memory. But what I thought recently was, wow, this feels like being pinned helplessly to a wall again.

To be honest I don’t know where I’m going with this. Except, maybe, to give voice to the discomfort that is dealing with awful things and having no choice in the matter. Here’s to acknowledging that sometimes the universe really doles it out.

I find myself listening to endless self-help podcasts these days, buying new journals, grasping at any tools to cope with the storm of it all. Because that’s my learned M.O. for survival. Growth, despite it and because of it. I’m proud of it, honestly, but it doesn’t mean I like it.

But, if I’m going to stick with Gravitron comparison, maybe it does suggest the tiniest bit of ability to move—even if it’s just a finger, or a foot—while the world does its spinning.

Well, Hello Again

Well, life got very life-y again. The lifey-est it’s been in quite a while. And, once again, I got blown off track with blogging. The whys of it all relate, in some part, to other people’s lives, and the details are not really mine to share. But they involve health crises, and, not surprisingly, they have been trigger-y.

One thing I’ve learned, as I’ve aged, is that my brother’s life and death, for better and for worse, were foundational experiences for me, and all new crises and traumas will lead me back to them. And, somehow, despite the redundancy of that well-traveled path, there are always new lessons to learn.

I could go on about some of them, per recent events. But they’re not all that pleasant, some of them. And they may also be more than you want to know and more than I’m capable of unpacking coherently, to be honest.

But as I sit here, trying to figure out which direction to go with this post, what I’m compelled to do, again, is look to my brother and think about how he faced the un-relentingess of bad odds and difficult circumstances.

It really all comes back to how do you keep going, with a growth mindset (to borrow a kind of annoying new age phrase), despite absolute crap circumstances? How do you go on? Why do people go on?

I’m reminded that I have a pile of books, ordered in an optimistic and productive phase, by prisoners of war who wrote about their ordeal. I read what was left of my brother’s journal (he’d shredded out a bunch of pages he apparently did not want to leave for posterity) and it’s clear from what remained that the prisoner of war experience resonated deeply with him.

I’m currently sitting in a bar with my laptop. It’s empty, the TV is blaring a football game (Packers vs Chiefs…I could care less). It’s me, the bartender, and some guy who just walked in, sat down at the bar and drained a beer, and left within five minutes. It’s one of my favorite ways to write….Social but not. Background noise that I can ignore.

But I’m without any of those POW books with which to finish this thought. So I googled POW and got this excerpt from US News and World Report of the late Senator John McCain recounting some of his experience as a POW in Vietnam.

Here’s some of the excerpt:

“As far as this business of solitary confinement goes—the most important thing for survival is communication with someone, even if it's only a wave or a wink, a tap on the wall, or to have a guy put his thumb up. It makes all the difference.

It's vital to keep your mind occupied, and we all worked on that. Some guys were interested in mathematics, so they worked out complex formulas in their heads—we were never allowed to have writing materials. Others would build a whole house, from basement on up. I have more of a philosophical bent. I had read a lot of history. I spent days on end going back over those history books in my mind, figuring out where this country or that country went wrong, what the U. S. should do in the area of foreign affairs. I thought a lot about the meaning of life.

It was easy to lapse into fantasies. I used to write books and plays in my mind, but I doubt that any of them would have been above the level of the cheapest dime novel.

People have asked me how we could remember detailed things like the tap code, numbers, names, all sorts of things. The fact is, when you don't have anything else to think about, no outside distractions, it's easy. Since I've been back, it's very hard for me to remember simple things, like the name of someone I've just met.

During one period while I was in solitary, I memorized the names of all 335 of the men who were then prisoners of war in North Vietnam. I can still remember them.”

I can see why this resonated for my brother, and how he absorbed the lessons. He was an introvert who became social, drawing people in to the salon on the non-sterile half of his room. He cultivated interests with a vengeance, and mastered things (math, guitar, drawing) at an eerie pace. He wrote books and plays (found in his notes) that he cast (unbeknownst to them) with the people in his daily life. (These never left his notebooks, but they’re there.)

His capacity for memorization is something I’ve mentioned before….entire plays, Poe’s lengthy poems. You could read a line out of Shakespeare, or pull a line at random out of Annabelle Lee, and he’d pick up and continue on, without hesitation. Maybe it was the lack of distraction, the focus time enabled him, that allowed him to do that.

McCain also talks about the need to cope with worry.

“One thing you have to fight is worry. It's easy to get uptight about your physical condition. One time I had a hell of a hemorrhoid and I stewed about it for about three days. Finally, I said, ‘Look, McCain, you've never known of a single guy who died of a hemorrhoid.’ So I just ignored it as best I could, and after a few months it went away.”

I can’t say that I can relate to the too much time on your hands that McCain and Ted dealt with.

But the worry, man, that resonates.

Not necessarily about my physical health. I haven’t dealt with that defining crisis yet. But there are plenty of other worry candidates. And other people’s health crises. The universe continues to deliver on all fronts. (Okay, one aforementioned lesson from my past: Past trauma does not immunize you against new ones. Obvious to you, maybe, but I think my subconscious had made some mental presumption that, you know, there was a limit on these things.)

You can watch a lot of your life’s energy go down the drain to worry.

I’m not a big fan of ignoring things, as McCain says, because that skirts too close to denial for me. (Definitely not a denial fan.) But the perspective taking inherent in that quote, I get that.

The bar is filling up, the buzz of conversations among regulars is rising, and a really sweet elderly man, who at first I thought was a client, since he sat chatting at the bar for a bit, but who clearly works here, just arrived with a huge smile to put a candle on my table.

After my brother died, I used to find it almost offensive that life went on, as if nothing had happened, for most people. Now, a lot older and hopefully a little wiser, I’m aware that many of the people here must have had their own struggles, and they’re here, keeping on, chatting, putting candles on tables.

I’m guessing there’s a lesson in that. There’s a lesson in most things, if you’re paying attention. I’m trying.

Ramble

Yes, the title says it all. I have no particular agenda for today except to write…something.

Life has been on hyper-speed lately and I am juggling a lot. So, I missed a post last week. And I’m late on one this week. And it bothers me, not only because I’m trying to keep to a schedule, but because this project is really my favorite thing to focus on these days. Maybe because, these days, I realize how much I have relied on the example of my brother’s strength, and how much I still need it.

I have been listening to the book Grit, lately, on audio, as a way to try and forge my way through research on resilience, which I suspected might pertain to Ted. At first, I found its conclusions kind of obvious. It starts, for instance, talking about how persistence often trumps talent, though talent and persistence are pretty much a deadly combo.

I almost didn’t continue with it. But I did. And it got better and better. I like audiobooks for this type of book because, when push comes to shove, I won’t spend precious reading time on non-fiction or self-help (or self-growth, as I prefer to call it). Listening to this book while walking, or cleaning, or folding laundry, works well for me. The downside is I feel like things go by and I’d like to focus on them more.

Among the things that I heard go by that I need to circle back on were the concept of hope…not just the vague belief that tomorrow might be a better day (but you have no control over it) but the idea that you could do something to change the course of the next day, and the next, to make it richer and more hopeful, and possibly change the outcome.

I feel like that’s a crossroads Ted must have come to, at some point, in the room, because he made such conscious use of his time to learn and connect. He didn’t wallow in his bed for eight years. He made a decision, at some point. I wish I knew why or when or how he did that.

The other thing that went by and that I need to re-visit was the idea that resilience is contagious…that one person who demonstrates it, or a culture that nurtures it, creates it and enforces it in those around you.

It made me think about all the people I’ve talked to, and who have reached out to me, who say that the memory of the way Ted lived his life still gives them strength.

I talked to Kevin James (aka Norm), Ted’s DJ friend recently. He’s recovering from a terrible case of COVID, literally learning to walk again. He said, “If Ted can do that, I can do this.”

Which is kind of how I’m feeling these days, as life pulls its punches (as it is wont to do, right?). If he can do that, I can do this.

I used to have a little metric I ran in my head as a teenager (and beyond), when life felt particularly hopeless, or I just felt bleak. As long as there was one good thing to stick around for, that I could think of, I had to stick around. My brother did not have an easy life. And yet, he wanted to stay. Would have stayed. Fought to stay, even as he died.

That image, of him fighting death, stays with me a lot. Here’s even more rambling for you…I think I may be the only person in my family who actually watched that 70’s TV movie “The Boy in the Plastic Bubble.” I was maybe ten, and the ending confused me, because in it, as I recall, John Travolta walks out on the beach, without a space suit. Meaning, he could die. Would die, with that kind of exposure.

Only as an adult did I realize that the message might be that living a life of freedom, on the outside, no matter how short, was better than a life on the inside, so to speak.

My brother did not see it that way. He fought to hang around, despite the limitations of his life, and the hardships of it.

I caught, if not his resilience, the example of it. I have always known that if he could do that, I could do most anything. Or at the least, I could, with hope, try. It’s an odd legacy, given that it comes from trauma, but there it is.

Process 6/7

Well. I was really psyched last time I posted a process post because a) it was two posts in one week and b) I was doing stuff/making stuff happen with this project and c) it was a different kind of post. And then last week happened and I didn’t write a thing or make any progress. Because: Life.

My life is nuts. I could recount it all. But, you don’t need to know the details, really. Or rather, it feels boring and self-indulgent to recount them. We all have life stuff going on. Suffice it to say that, last week, life taught me that as much as I may think I’ve finally glommed on a to a system or I can keep things going despite chaos, chaos, i.e. life, sometimes wins.

But here’s the thing…even as I typed that, and tried to move on to enumerating what I failed to do…I realized I did just a little. Not enough, by my standards. But…a little. So, without further ado, here’s my messy “I did (or didn’t) do it” list for the week.

Last week…

1. I failed to do the a.m. pages every day. This makes me sad. I miss them, and know I work better—more creatively, more joyfully, when I do them. Sorry for sounding earnest. But it’s true.

2. I did continue to listen to Grit, which I like more the deeper I get into it, though I find that in listening I sometimes walk away and miss stuff (I often leave it playing when I’m cleaning, etc)…I find it more and more relevant to Ted and may call the author of the book to see if she’ll talk to me about him/this project. Among topics that came up that interested me were hope and the idea of very structured/targeted practice….all of which I think pertain to Ted. The stuff on parenting, however, was giving me an anxiety attack re: what I have failed to do for my kids. My kids are old enough (11 and 14) that I’m already starting to feel the pinch of missed opportunities. Also, my 14-year-old is now in the stage of telling me all the things I’ve done wrong. So that’s fun.

3. Bri and I decided to do some of the exercises in Grit, which means I have to buy the hard copy, too, now and we’re moving on to the next book simultaneously. We’re going to be listening to Martha Beck’s The Way of Integrity because we were both blown away by Oprah’s interview with her on Super Soul (Oprah’s podcast).

Marc

When Ted was about 13 or 14, he got interested in music. In true Ted fashion, that meant he was in head first. Early in the morning on November 13th, 1976, Ted suited up in his space suit and my dad brought him to a music store in Rockville, Maryland called Veneman’s, which had agreed to open early in order for my brother to shop for guitars, free of stares. The Veneman’s guy appointed to the task of showing my brother around, guitar-wise, was Marc Cherry.

Marc was (and is) a musician. It’s been a long time since I’ve heard him play in person, but I remember just…the fluidity of listening to him. His sound is elegant. I’m not sure how else to say it. He worked at music stores in the Maryland area while playing gigs with various bands at nightclubs and clubs in the DC area, including Blues Alley and the Maryland Inn.

He now lives in Arizona, and still plays beautifully (here’s a link to his recent album, Strings Attached, which also features a song called The Empty Room, for the book I wrote about losing my brother). He also invented something called in MBrace stand that basically hold yours your guitar safely in place, allowing the performer to walk away from it, and back to it, so that they can play more than one instrument during a song. (It also alleviates fatigue and neck pain if you use it in the studio for recording sessions, per his website.)

When I spoke to him recently, he wanted to make sure that I also noted that he was still devilishly handsome. So please, take note, so I don’t get in trouble.

I know the actual date that he met Ted, because Marc said the movie “The Boy in the Plastic Bubble” that was, in part, based on my brother, had aired the night before on his (Marc’s) birthday, November 12th. And I know the movie aired in 1976.

I love specifics…and they’re sometimes hard to come by in recollected anecdotes that unfolded decades ago.

“He wanted to get a new amp,” says Marc. But he couldn’t test them out, because the suit, which was made out of some sort of thick fabric, covered his fingers. (I remember the suit hand pieces not even having five fingers built into them, in fact, but I might be mis-remembering that.)

“So, I did the playing and talked to him about the amp,” said Marc, who also, somehow remembers that it was a Music Man amplifier. “He had the face mask on, so you couldn’t see his face. But it was just kind of strange talking to him. Like I said, I had just seen the movie, and I didn’t know how much of a farce it really was yet.”

It was fortuitous that Marc was the one playing that day, really, because Ted was impressed with him. And he liked him. A few days later, my mother called him and asked if he’d be interested in being Ted’s teacher.

One thing I’ve learned, over the last few months, talking to Ted’s friends, is that he picked them carefully. He was not a kid so desperate for connection that he’d take any friend. He picked people who were authentic, who did not talk down to him, and who managed, somehow, to see around his sterile room, and his spacesuit, and see him.

Ted recognized all of that in Marc, and the invitation was proffered. Marc said “Sure.” And he quickly became part of our extended family, and the “salon” that gathered regularly, in different formulations, in the non-sterile half of my brother’s room.

“I remember the first lesson,” he said. “I just asked him to learn what I showed him first. And this is the thing, I only had to show him once. I started in the key of A, A major and A minor scales, two octaves, ascending and descending. And I was just trying to see what his hand position was like.”

Next week, when he came back, he says, he was doing the scales perfectly. “It was pretty impressive because it wasn’t just learning the scale. It was just great hand position. All the little things that I talked about, that I forgot that I even said, he got completely.”

After that, he said, they started working…after a fashion. Sometimes they’d do a three- hour lesson. Sometimes half an hour, if other people showed up—anyone from me and my parents to other friends, doctors, and nurses, who usually hung round for a while, as well. Medical care sometimes interfered, but not for long.

“I remember one time, George [a male nurse] brought in the EKG machine. And he says, ‘Do you want to know how this thing works?’ I was like, okay. So, he was holding this thing up and showing me what buttons to push.”

“It wasn’t so much like I was trying to teach him how to read music, because I don’t,’” Marc said. “I was just trying to talk to him about, ‘This is a way to think about it.’ If you see a piece of music, and it has a D chord or two bars of four bars, don’t play the same one. Play in D and then do a second inversion and move it around a little bit. And he got that very easily.”

By the end of what he calls their “formal” lessons, he said Ted was jamming along to the likes of Chick Corea. (Though I remember him being more of a classic rock fan, myself.)

“He definitely had a gift,” said Marc. But he noted that it was not just music. It was more that he was an artist by nature. “Like when everybody found out that he could draw. It was more than just sitting down and doodling with a pencil.” (He specifically mentioned a self-portrait we found among his things, and that later was printed in the program handed out at his funeral.)

“He excelled in music and chess and he loved Shakespeare and a lot of things that you don’t really think of for a teenager. He was able to talk to you on your level, more than the other way around.”

I asked him what he thought got Ted through, how he survived as well as he did. “He always had a great sense of his own identity,” he said. “He knew the things that motivated him. His likes and dislikes. And he was aware of his abilities. I think all of that helped galvanize his spirit.”

Marc remembered going to the Capital Center in our DJ friend Norm (aka Kevin James’s) van for concerts, and the concert that resulted in Ted getting his second Les Paul. “We went to see Loggins and Messina. And Kenny Loggins had a natural Les Paul Custom. And was like ‘That’s a really nice one,’ and we talked about it for a little bit.”

Ted already had a Les Paul, a Gibson gold top, that he loved. “That was his baby,” said Marc. (Agreed…I’m currently contemplating getting a tattoo of it…that’s how strongly I associate that guitar with him.)

Marc had a connection at the Washington Music Center and convinced them to open up early for Ted one day. He had gone up two days before and picked through the Les Pauls and picked out one he thought Ted would like. Ted brought home Les Paul number two, but it never displaced the gold top as his favorite.

We talked more about the old days, including a dark day in which Marc came to visit, and found Ted in the midst of a rage, because his blood counts, which had been elevating in such a promising fashion that there was talk of him getting out, had plummeted again.

“I passed Vince (my father) in the hall when I was walking down the hallway and he said ‘It’s not a good night.’ And when I got there, he had thrown all the furniture out of the room, into the outside area.”

Marc, not entirely getting the situation right away, said he said, “Hey, what’s wrong with you? Why are you doing all this stuff? Don’t you know everybody’s trying to help you?”

Marc said Ted looked at him in disbelief.

“I got it pretty quickly,” said Marc.

I tell that story—though it’s clearly a painful one for Marc to remember—to illustrate that Ted was not some Buddha kid that was never perturbed by anything. He was faced with a lot. And he dealt with it. Sometimes, as in this night, it wasn’t pretty. But who would have taken the news of liberty removed any better?

When Marc came back the next time, he said, Ted was fine. “I don’t know anyone else that could have dealt with that,” he said. “He was just a combination of some incredibly strong characteristics and traits.” He later tried to enumerate those traits. They were ones that get mentioned a lot in reference to him: resilience, hope, humor.

There was a lot more in this interview. But the thing that slayed me, was him telling me about he and Norm (aka Kevin James) visiting in the days after Ted collapsed from heart failure, and was literally clinging to life. “At night, before we would go, we would sit outside of the floor, backs against the wall. We’d call it sending good vibes. We would just sit there for a while and do that, every night.”

As I said, my brother picked his friends carefully, and well. If good vibes could have cured him, he’d still be with us.

The last time Marc saw Ted, he said Ted said, “Thanks for being around.”

“I remember saying, ‘Well, where else would I be?’”

The next morning, he got a call from my father telling him Ted was gone.

Process

A week or so ago, I wrote a post about process, i.e. my process in putting together projects, sme of which become books. That’s hopefully where I’m going with this one. I decided to these posts regularly, not because I think I’m so fascinating. Anyone you know who produces art of any kind has a process. Sometimes it’s evident to them, sometimes it’s not. Once I realized that I had things that worked for me (and some that didn’t), I became fascinated by this is as topic, and in further cultivating mine. (Anything that makes the work easier and more pleasant to my own peculiar brain is welcome.)

In aid of process, this week, I’ve….

Been Doing Some Escapist Reading. I’ve been reading Stephen King, precisely because I find his work an escape and he tells a good story. For my first book, I read my way through Harry Potter as my escape. This time, it’s King. The brain wants what it wants. I’ve gone through Pet Sematary and Cujo thus far, in this process. Right now I’m working my way through Bag of Bones.

Been Listening to Self Help. I hate the word Self Help. It’s so…earnest. What I’d really call this genre is something more akin to Self Growth. I’m listening to Grit, by Angela Duckworth, to see how the research described in it might or might not play into background research on things like resilience for my project on Ted. So far, it doesn’t feel hugely relevant, but I’m still listening. And re: listening…I find I need to read escapist stuff when working on a project, and that listening to non-fiction research relevant to my topic is a better way for me to absorb that kind of material. Go figure.

Mostly Kept Up With The Morning Pages. This is three pages of handwritten stream of consciousness writing that you’re supposed to do every morning, per Julia Cameron’s The Artist’s Way. You’re not supposed to re-read. It’s not journaling. It’s more of a mental decluttering that makes it more possible for other things—like inspiration, ideas, connections—to filter their way into your noggin. It sounds a little silly. But, it’s magic. True confession: I have a hard time keeping up with them on the weekend, when other things (read people in my household) demand my time and attention.

David

Awhile back, I interviewed a few of Ted’s friends from elementary school, specifically about a surprise birthday party they threw for him when he was first in the hospital. When I told my mom that I was speaking with them, she said, “The only one who is missing is David.”

David wasn’t missing because he couldn’t make it, or I couldn’t track him down. David, who had been Ted’s best friend since second grade, is dead. He was killed in a car accident about six months after Ted died. They’re buried next to each other. After all these years, typing that truth still blows my mind.

David and Ted met in elementary school. David’s family lived about two blocks away from us. I don’t remember a whole lot about their friendship before the hospital. I do know that he was the one constant friend who visited Ted in the hospital for many, many years. As they got older, their interests evolved together, and both began to play the guitar, and visits turned into jam sessions. Eventually, in high school, David brought in Charlie, who also played guitar, and who also became a regular visitor in Ted’s “salon.”

I remember David as kind of a happy go lucky guy. Sweet. I remember him perpetually in jeans and a white Hanes T-shirt, with a smile so big it squinted his eyes. I thought of him as a bit of a brother stand-in, given his connection to Ted.

Right before he was due to go off to college, he stopped by the house to say goodbye. He promised to come again, when he was home. And then, within a month, he was gone, killed when he and three other boys decided to cram themselves into a two-seater sports car and take it out for a joy ride. The driver took a corner too fast and ran into a telephone pole. David, who was pretzled into the back, sustained a head injury he couldn’t recover from.

I can’t remember a lot about the aftermath. I can remember the disbelief when I heard. He died right around what would have been Ted’s 18th birthday. I can’t remember exactly how it evolved that he was buried next to Ted, but I know that everyone seemed to think it was fitting, somehow. Still, to go visit and see them both there, with their short lives spelled out in the dates on their stones…it’s a punch in the gut. Every time.

I’ve always wondered about reincarnation. My brother was obsessed with the military and wars, and he died on Memorial Day, at 17. I wondered if it evoked some former life as a young soldier, somehow. And here was an 18-year-old friend, buried next to him. Had they been fellow soldiers in another life?

I don’t know, of course. But the sight of them there like that does make me ponder questions like this. Maybe it’s just me trying to make sense of it all. It would be nice if things made sense, wouldn’t it? What I do know is that, in the aftermath of loss, the only sense is the one we make of it, how we choose to go on, or learn from it.

Losing my brother has made me relentless about self-growth. I’ve learned that most things, even a loss, are more survivable if you can make some kind of meaning of them, even if the event itself is, on the surface, meaningless. I wonder, sometimes, now, if that wasn’t part of how Ted got through his life in the hospital.

I don’t really know where to end this. The anniversary of my brother’s death is May 27th, and I can still feel the heat on my skin at the graveside service. I don’t remember David’s funeral at all. Now, when I visit, I bring flowers for both of them. And I wonder, if they’ve moved on to some other predestined life together. Anything is possible.

Process

One of my nerdy obsessions as a writer is process. Specifically, how do you (or I) go about your creative process? What works for you?

I credit some of my fascination with this to Edward Vilga, who I’ve known forever in many guises (yoga teacher, friend, author, producer, etc…) but, most importantly, in this case, in his capacity as a creative coach.

I’ve worked with him on a couple of projects now, and in this process, have come to see, recognize, and refine my own process of getting from A to Z creatively.

Among the things I’ve learned…I’m visual. Give me a pack of markers, pencils, a sharpener, and a paper planner and a blank notebook, and I’m a happy camper. There’s something about the tactile feel of pencil against paper that helps me think. Digital calendars/planners are death for me--out of sight, out of mind. I may fill them out, but it will never occur to me to look at them again.

I am so visual that I can’t read text beyond a certain number of pages on the computer, I have to print it out. With my first book, when I could not figure out how to integrate different aspects of the narrative (interviews, experts, reporting, my own memoir), I literally cut pages apart and pasted them back together in different order on bulletin boards. I did the first few chapters that way. My living room was a sea of bulletin boards with shards of paper tacked on with thumb tacks.

After that, I’d gotten the hang of it enough to do it all on the computer.

Now I use foam board (lighter, cheaper) and start projects by pinning index cards with ideas, chapter headings, pictures, quotes, etc. to them….Eventually I get around to sorting them into an order that makes sense to me.

I also collect books and movies related to the themes I’m writing about…and will often read an entirely different genre of book than I’m writing as an antidote to what I’m writing about. For my first book, about sibling loss, which was an emotionally tough process, I immersed myself in Harry Potter.

I can’t remember what I read during the second book, but I know it had nothing to do with cancer. Stephen King is my current go-to.

I also watch horror movies while I write. I have no idea why this works for me. I think it’s a mood thing. The opening music and scene in The Shining, when the VW bug is winding its way up the mountain, is perfect to me. (This is also why my kids are horror fans…because it’s hard to turn a movie on and off fast enough when toddlers are around.)

For this project, thus far, I’ve got a notebook devoted to it, as well as a column in my paper planner, a few smallish foam boards going, and a growing pile of books to read related to isolation and resilience. (Just started a resilience book club with my friends Bri and Anna to help me get through them.)

I’ve also re-started Julia Cameron’s exercise, the morning pages, which work a weird sort of magic in freeing me to actually act on ideas.

I’m also still working with Edward, so who knows what new piece of process I’m going to find. I find a real joy in figuring out how my brain likes to work, and working with it rather than against it. I also love hearing about other people’s process, because it gives me ideas to steal.

Much as I love all this, it does makes me a little sad for all the time I spent NOT knowing all of this. And even sadder for my kids, who, in school, have so often been taught there’s one right way to do things. Like writing, especially.

I recently found myself trying to instill a little rebellious “maybe that’s not the way your brain works” instinct in my eldest son, re: some of his schoolwork. Not sure he was listening, however. And I probably would not have at 14, either. Hopefully, he figures it out sooner than I did.

Matisse

I was on the MOMA site the other day, checking out what’s on exhibit now that the museum (and others) are open again.

The newest thing is the show by sculptor Alexander Calder (who I love). But what I ended up lingering over were images from the museum’s Henri Matisse collection, which are pretty much always there (I think…I don’t follow this closely enough to speak with certainty).

I was looking specifically at a kind of ring around the Rosie painting of nude figures, called “Dance.”

I went to art museums a lot as a kid. My mother is an artist. She either brought me along for lack of a babysitter, or because she was actually trying to expose me to this stuff. Whatever the reason, the result is that encountering some art, for me, is a nostalgic albeit blurry blast from the past.

In this case, I remember seeing Dance as a kid and thinking: “Wow, that guy really can’t paint.”

The figures are very impressionistic, with misshapen limbs, etc. Seeing it again, I don’t know what to say about it (my mother would). Just because I’ve seen this stuff before doesn’t mean I’m smart about it. But I don’t feel as inclined as my childhood self to judge it harshly.

What I do remember is, on perhaps the same visit as the first time I saw this, or another one, seeing a collection of Matisse’s cut outs. And being wowed. Not by the art, especially. By the story of how they came to be.

The cliff note version, as I understood it circa age 8 or so, was that the artist had, in his later years, become ill, confined to bed or a wheelchair, largely, and partially lost his eyesight.

Undeterred, somehow, he turned to “drawing with scissors,” cutting shapes out of paper painted by assistants, and pinned on the wall (also by assistants, I believe). There was certainly an exploration of new ideas there. But, as importantly, the new form of art suited his limited mobility and failing eyesight…and he was still creating.

I don’t know enough about art to talk about what he created. Frankly, I like his paintings more. But I remember being moved and impressed by his drive to create, and his persistence, even as a little kid.

Did they remind me of my brother at the time? I don’t know. Maybe it was an echo. Maybe I “saw” people who refused to be put down by circumstances, and liked them for it.

But they’re the kind of stories, and memories, and reflections that are piling up on me now as I look beyond my brother to other examples of people who managed to thrive despite what the universe threw at them.

So, color me a Matisse fan, even if I can’t tell you much about his art.

POW

From as far back as I can remember, my brother was obsessed with wars. As a kid, he had a full array of G.I. Joes, and those little green army soldiers littered our house and backyard. He read about wars…histories, guns, memoirs, fiction.

So maybe that’s why, when I first read the only journal he kept in the hospital, and I saw a reference to a POW coming to visit, I just mentally compartmentalized it into “war stuff he likes.”

But, as I’ve worked on this blog, and thought about what research I might look into to explain how Ted managed to thrive, despite his confinement in a sterile room, and thought about categories of people and memoirs that speak to confinement and growth…that POW reference started to resonate in a different way.

When I work on a book project, I collect movies and books that relate to it, thematically, no matter how tenuous the link.

I just spent about half an hour on Amazon, going down the rabbit hole in search of books by and about POWs.

Even on cursory glance, it’s clear why these guys may have interested Ted. They were confined and had their liberty taken away, they were tortured (Ted wasn’t tortured, per se, but I imagine he experienced a lot of the medical intervention he was on the receiving end of that way), they couldn’t have the food they wanted (all Ted’s food had to be sterilized almost beyond recognition), they didn’t know when or if they would get out, their lives were at stake.

I’ve thought about other people and relevant experiences to explore….Anne Frank, and people who are incarcerated, for example…and thought about going down those rabbit holes, as well.

This is just part of my process. And I was reminded of this, that it was time to start it, because I brought my older son, Henry, to school this morning in Brooklyn. We pass Spike Lee’s production company, 40 Acres and a Mule, on our route.

I watched a movie of Lee’s called 4 Little Girls, about four little girls killed in the 16th Street Baptist Church bombing in Birmingham, Alabama, in 1963, when I was researching my sibling loss book, The Empty Room. The movie is a documentary and it includes interviews with some of the siblings those little girls left behind.

Sometimes this kind of research just helps me method act into a mindset, to think my way through something that puzzles me. Sometimes something more tangible comes out of it. We’ll see. I’m curious to see what emerges.

Stories

I’ve been thinking a lot lately about the fact that, while I’ve meant this project to be about my brother, it’s a lot about me, so far. My memories, my recollections, my stories. Part of that is easy access. The thoughts in my head are fairly easy to get to. (It’s finding the time to do it that’s hard.)

I have done some interviews with people who were close to my brother, which I’m in the process of having transcribed. (Transcribing is a beast of a task.) But I find myself circling reading them and writing them up. Part of it is the burden of not letting people down…by which I mean the people who shared the stories with me.

Writing people’s stories is scary, because you’re taking liberties, potentially. One thing I have learned, writing memoir, is that people almost always see their stories, or their role in them, differently than you do. For that reason I’ll be sharing the profile posts with the people I interviewed before I post them.

Writing about people who are dead is easier, of course. Not much they can do about it.

I wonder, sometimes, how my brother would feel about this project. Flattered, maybe. Happy to get the old gang back together again, playing the hub, as usual, even through his death, maybe. Annoyed, possibly.

Here I am, his younger sister, butting into his territory, his story. I used to have to ask permission to enter his room when we were kids, and he still lived at home. Imagine how he might feel about me invading this terrain. I can almost feel the metaphysical smack in the arm.

But there are other reasons I wonder, too.

I found an old journal of my brother’s at one point. It’s a green canvas thing, with the word “RECORD” inscribed on the front. Very government issue. My brother has written his name on the front, and on the spine, he’s written “Log,” which is probably a nod to the Captain’s Log kept by Captain Kirk in Star Trek (the only captain he came to know in the Star Trek opus).

The entries start around March of 1973, when he’d be ten-years-old, during the first year he was in.

I suspect someone gave him this to help him cope. The whole, write your feelings thing. Here’s a little annotated excerpt from one entry:

March 23rd: “The room is beginning to more more and more like a prison…I find my temper growing very short and hard to control and the least thing will set it off without toys and TV in the room I find it is growing even shorter. I think writing this log helps to settle me down, but only for a short time. I do hope that I will be able to leave soon. I’m beginning to feel like the forgotten prisoner of Alcatraz…..I’m expecting a former POW to visit me next Monday and I am waiting anxiously til that day…I did not sleep well last night on account of the IV I had, which finally came out at 2 a.m. in the morning.”

[Note: I think he was punished for not taking his medicine by having his toys and tv removed from the room.]

The entries hurt to read. He’s really angry during a lot of them. In all the entries, I see a very self aware kid struggling with control over his life, anger, desire to resume his life, identifying with a POW….The thing that is striking is that, though the entries are painful to read, there is no question that he is engaged with the struggle. Trying to do better. Aware, even as he writes, that he is coping with his feelings…because he says that.

He’s ten.

I just…can’t help but admire him, still. I wish adult me could be there to help. The reality is that, at 6, not quite 7, when these entries begin, I was probably not much help. I might even have been a painful reminder of the life he was not living at home, though I never remember him saying anything like that or taking the fact that I was healthy out on me. He liked to tease me, and did (liberally). I did feel guilty about being healthy, but that was a guilt that was internal, not evoked by him.

But here’s the thing about this journal, the first 80 pages have been ripped out. Presumably by my brother. I have no idea what could be in them, beyond the anger and struggle I see in the entries that begin in March. How much worse were they? What did my brother not want other people to potentially see? It’s clear enough, he meant to erase part of his story. It was private.

At any rate, here I am, reading his journal, crossing boundaries he might not have wanted crossed, by sharing his story, and his thoughts, plumbing what he might not have wanted shared, perhaps skewing reality…and he won’t get to preview whatever I write first.

Do we have a right to share the stories, our assumptions about the stories, of people who have not given permission? I don’t know.

There’s a line from Hamilton…”Who lives, who dies, who tells your story?”

I lived, and we know who died, and I guess, rightly or wrongly, I have appointed myself story teller.

To be honest, I can’t seem to stop myself. Writing, for me, is a form of scrutiny, the mental version of turning one of those hand-held brain teaser puzzles over and over again, looking for the answer. If I keep doing it, the “a ha!”…or at least an “a ha!” might come to me.

I often don’t know what I think or feel about something until I try to write it. Which makes me realize that Ted, in his journal, and me, in the form of this blog, are engaged in very similar exercises.

Only I still have the privilege of walking away from my circumstances, when I feel like it. Ten-year-old Ted did not. Somehow, he moved from the anger and pain in those still-existing pages, to one of the most interesting, intellectually curious, and well-balanced people I know. I still don’t know how he did it.

Macbeth

My oldest son, Henry, has been on a chess jag lately, and has been playing in person at a chess spot in Greenwich Village called Chess Forum. This means that, aside from being subjected to a lot of in depth lectures on things like Alakhine’s Defense, gambits (there’s not just a Queen’s Gambit, it turns out), and the Sicilian Defense, I’ve been spending a lot of time in the Village, myself.

I don’t mind.

Before this, I was the main person he was playing with, and he was slaughtering me on the regular and heckling me while he did it. It wasn’t until he first started playing chess (in elementary school) that I realized that I did not, as I’d always thought, know how to play chess. I knew how the pieces moved. There’s a difference.

I’m still at the same level I was at when he started playing, which is to say, I know how the tricky pieces move, though occasionally I still try to move a pawn like a checker. (No need to mock me, he has that territory covered.) Him, not so much. He’s improved in leaps and bounds. Once he’s in to something, he’s in with both feet.

Yesterday, I made the trip down with him just to keep him company and he asked me to wait around so we could do dinner when he was done, which resulted in me cooling my heels (literally, it was a little chilly) at the outdoor seating set up for my favorite bone broth place down there, and praying I had enough juice on my phone to keep my Kindle app alive for a while.

I hate being caught without a book. In the old days, pre-Kindle, I was the kind of person who always carried a large-ish tote and several books at a time, because I never knew what I’d be in the mood to read. Kindle changed my life (and relieved a lot of shoulder strain).

On this day, as I scrolled through my library, I settled on Macbeth. I don’t know why. It was a mood thing. I like Shakespeare’s dark stuff better than his comedies. And I’m particularly partial to the opening scene because I find the witches infallibly creepy.

I realized, to my surprise, that I’ve read this scene so many times that I’ve memorized it. Which is how I started thinking about my brother.

One of the things I’ve been talking with my parents about lately is my brother’s insane memory. And his tendency, (which runs in my family) to take a deep dive into things that interest him.

Two of the subjects of his deep dives: Poe and Shakespeare. I’m not sure how he got on to either of them. I’m hoping to connect with his former teacher. But, however he discovered them, he went all in.

I remember him reciting poems like The Raven, and Annabelle Lee, in their entirety. I also remember that I could open one of the poems, pick any line in it, read it out loud, and he’d pick up from there and continue on. At the time I remember being impressed. But, remember, he was also my older brother and he set the tone for what “older” looked like. I didn’t quite appreciate that this was not necessarily normal behavior for a 16-year-old, much less anyone.

My dad recently confirmed that he could do it with Shakespeare, too. Pick a play, pick a line somewhere in there, read it out loud…and he’d just continue on.

When he died, he’d been immersed in Romeo and Juliet. My mother had a passage from it engraved on his gravestone:

“…and, when he shall die, Take him and cut him out in little stars, And he will make the face of heaven so fine That all the world will be in love with night…”

It kind of encapsulates a lot of how many of us felt about him. It also slays me every time I see it. It’s perfect.

My mother bought me a copy of the play after Ted died, because she said he’d made a note somewhere to have me read it. He took his curating of my reading list rather seriously. I read Jane Austen young, and it was because of him. I also read Jaws young, also because of him. That one scarred me for life as, let’s face it, he knew it would. (He was not above being a jerky older brother, despite all the nice things I write about him.)

It occurred to me, as I was sitting there, that there was another bit of Macbeth I knew by heart. It’s the Tomorrow speech, at a point in the play when (I think, it’s been awhile) Macbeth’s wife is dead, and he’s waiting for the other shoe to drop on all his treacherous behavior.

Tomorrow, and tomorrow, and tomorrow,

Creeps in this petty pace from day to day,

To the last syllable of recorded time;

And all our yesterdays have lighted fools

The way to dusty death. Out, out, brief candle!

Life's but a walking shadow, a poor player,

That struts and frets his hour upon the stage,

And then is heard no more. It is a tale

Told by an idiot, full of sound and fury,

Signifying nothing.

It’s a passage FULL of time. The slow, tedious pace of it, the emptiness of it…the meaninglessness of it. I find it fascinating. I once saw Ian Mckellen do a one man show called Acting Shakespeare in which he took that speech apart, paced it out, like a metronome, walking, as he spoke it, to emphasis just how heavily Macbeth felt the burden of time.

It made me think of the way my brother spent his time in the hospital. Doing things like mastering the guitar, or memorizing loads of Shakespeare. Left with time, and not much else to do, he could have gotten pissed, or shut down.

But he turned to the things that lit him up, instead. Found his joy, if you will. Took the deep dive. It’s pretty impressive for a then 9-year-old to weigh what was in front of him and make that choice. And it was definitely a choice. It’s something I loved about him, and this deep dive tendency, which I’m seeing in my older son, is something I really like about my family.

It has occurred to me, many times, that someone whose joy was to run around and play soccer would have had a harder time surviving the way my brother did in the room. That, being an introvert, and smart, and able to focus intensely on things that interested him, he was, if anyone is, well suited to his confinement.

And, of course I think about this past year, during the pandemic, in which some people took to hobbies with a vengeance. Baking. Knitting. Languages.

What choices do we make, when faced with adversity? With confinement? So many choices, when it’s easy to think you have none. We were all living a version of his life, to some degree, this year. What choices did we make?

My brother isn’t the only one who’s faced this on some level. There’s Anne Frank. There’s Malcolm X, when he was in jail…Countless others whose names haven’t made it to the cover of books, so we don’t know their stories.

I was kind of ticked at the people who took up hobbies with a vengeance during the pandemic, to be honest. I was envious. I have a full-time job that, because I cover health as a journalist, got busier, and I had two kids who were attempting to go to school online (which was frankly awful), to name just a couple of my responsibilities.

I had less time than ever. But I found myself wanting to dig in to the time, the isolation, to do what my brother did. As we ease out of the pandemic, it feels a bit like a missed opportunity. I know that sounds odd. I’m not at all endorsing the continuation of the pandemic so that I might pursue my hobbies.

But…I want to immerse. I want to make the choice to grow during adversity. It’s a way of living I thoroughly endorse.

I know that I do make these choices, almost daily, in small ways, because of what I witnessed growing up. But I wish I had something more…a play memorized by heart, perhaps?…to show for it, sometimes. I am fond of the deep dive, myself. I come by it naturally.

Maybe there’s space in real life to find that again. Some balance between too much time, and not enough, to connect with what fires me up.

In the meantime, I watch my son, and I listen to him wax on (and on) about some or other chess defense he wants to learn to play against some opener, and I remember something I loved about my brother, and myself, and, unlike poor misguided Macbeth, I hope for more time to figure all this out.

Mercy

Here’s a weird story about the way the mind, or, hey, I’ll only speak for myself, my mind, works, and mercy.

I was just in the grocery store, because I’m out of almond milk and I kept forgetting to buy it all week. For convenience’s sake I went to the pricey Gristede’s (nickname “Greedys”) on my block. Since I was on my own, I put my Air Pods in my ears and clicked play on one of my many playlists. Which is where the how my mind works part kicks in.

A song by a Louisiana singer-song writer named Mary Gauthier, called “Mercy Now,” queued up. I’ve been to see Gauthier a few times, drawn by our mutual Louisiana ties. This song in particular speaks to the need many of her close ties…her father, her brother…have for mercy, by which I believe she means compassion, and why, and eventually grows to include mercy for all of us.

It is, in a word, beautiful.

I’d forgotten about it, to be honest. But I’d heard it, ironically, recently, when a woman I know, a fellow mom, back when Henry was in kindergarten (he’s now in 9th grade), who is a dancer, posted a flashback video of herself dancing to it on Facebook.

And I thought, wow, someone else knows about Mary, too. And then the song took over and, as she danced, I thought about mercy, and how hard life can be.

As it happens, this mom/dancer has become a painter recently, and, having seen her stuff on Facebook, I asked her to paint a seascape for me, which I just hung in my living room today.

When I told her what I loved about water, I referenced the water in Bermuda, which I find unutterably beautiful, in part, perhaps, because we visited Bermuda just after my brother died, and I found solace at the sight of it.

So here I am in the grocery store, with a song in my ears that evokes the commonality of pain and compassion, and an artist whose work made an appearance in my living room today, and who is linked to the song, via dance….

And, I’m thinking about my brother….because of the water in the painting, and the brother mentioned in the song. In describing him, Gauthier says, “The pain that he lives in it's almost more than living will allow.” And then a line later, “He could use some mercy now.”

What I was thinking was that I hope, in writing so much about my brother’s resilience that I have not given the impression that he did not suffer, that it came easy.

My brother was 9 when he was diagnosed and went into that laminar air flow room. As a younger sister, I did not see his pain as an adult would. And, to be honest, I think I have repressed a lot of what I did see, because it was traumatic.

He had special qualities which enabled him to survive, to be sure. But he suffered. He definitely did. He needed mercy.

I remember the IVs, which were ever present, it seemed, and how he got teary when they set the drip too fast and they stung. I remember seeing the ice hammer kept in his room to drive the needle into his hip for bone marrow samples, and wondering how the hell he could stand it.

I remember spates of irritability, and impatience, and anger, particularly with me, because, hello, I was his younger sister and built for that role. I remember an incident, I think when his blood counts were rising, and there was hope he’d get out, and then they plummeted again, when he threw everything out of his room.

I would like to think he was super human and above having suffered because of his circumstances. I would like to think this because it would be nicer to think that he did not endure emotional pain. It hurts to think of his pain.

In fact, one of the new griefs of his loss, as an adult, is to have to realize how much he must have suffered. When each of my sons turned 9, I thought…this was the age…and then…but he was just a baby.

The fact is that he became bigger than life, amazing, is not because he started that way, but because he managed to endure some pretty hellish situations and somehow still come out of it with a sense of humor and hope and an unquenchable curiosity about life.

I hope I have not white washed his story.

Back to mercy….Part of the reason Ted survived as well as he did was due to the mercy, and compassion, shown by others….friends, family, doctors, and nurses. Looking back, with that song in my ears, as I wandered around the grocery store, I was filled with gratitude, as I often am these days, for the mercy that others showed him.

But it also occurred to me that my brother gave as good as he got. His version of mercy was to…how can I articulate this?...to allow others to experience the discomfort of his situation, and his unquenchable humanity, simultaneously. He insisted on being the main show, rather than his illness—and it was, all things considered, a pretty “showy” illness.

There was a lesson in this.

I think one of the gifts that others, including me, got from him was an ability to tolerate the discomfort of horror—disease, deformity, the horrible luck of the draw the universe can hand out to people--and see the humanity within.

Because of him, I can look someone who has lost their hair, or a limb, due to cancer, in the eye, and see the person, not the circumstances. That, the ability to show up with eyes for the human, not the horror, is the form of mercy my brother taught me.

I’m not perfect. Sometimes I choose not to show up. Earlier in the day, we were on the subway in NYC and I made my son move seats because—from my son’s point of view—there was a homeless guy asleep on the bench across from us. The real reason was that this guy was sniffling and not wearing a mask. My explanation did not sway my son, though, who thought it was mean. This guy had his back to us, so he didn’t see, but my son wasn’t wrong. Yet, faced with his humanity, and concern for my son (I’m vaccinated, he is not), I went with my son.

Suffice it to say I have work, and thinking, to do around this topic. As with many things I think should always be first and foremost in my mind—like, the fact that, even without a definitive diagnosis, we’re all living with limited time and should live our lives accordingly—I slip and got lost in the minutia of life.

But that’s the beauty of having a weird mind. If I find that I forget, I can count on my painting, or my playlist, or my Facebook feed, or one of my kids, to remind me of what I need to be thinking about, usually when I least expect it.