Wraith

I talked to Marc Cherry, my brother’s guitar teacher and friend, last week. And while I was talking to him I had a flashback to the day of my brother’s funeral.

It was after the funeral and the cemetery, and everyone had gathered at the house. I was sitting on the floor in our family room, doing I don’t remember what, when I heard the tinkling of ice cubes above me, and simultaneously felt someone sink down next to me on the floor.

It was a family friend, well-known to me. Also well-known was her propensity to drink too much at times. This was one of those times. She was holding a club glass with ice and a brown liquid in it, and she smelled like alcohol.

She draped her arm over me, leaned in, and, said “You have to write about your brother, or everyone will forget about him.”

I felt fear, and alarm, and a complete inability to handle the situation. I didn’t know how to respond, either to her too-closeness, or what she said. In my memory, I sat there, frozen.

And then, Marc was there, having spotted something amiss, lifting me up the elbow, and ushering me elsewhere.

I was so grateful. It may be the only thing I remember from that gathering.

And, to be honest, it haunts me.

I’m going to take a guess and say that one of the worst things for anyone who has lost someone close to them is the idea that they’ve been erased from the planet, all their specialness, lost, unseen, forevermore.

There’s a great line that speaks to this from J.D. Salinger’s Franny and Zooey. (Sibling loss is all over Salinger’s work, by the way, though to my knowledge he did not lose a sibling.) In it, Buddy Glass talks about how he continues to pay for a private phone line he and his older brother, Seymour, who is dead, shared. The reason, he says: “It’s…essential to my inner harmony to see Seymour’s listing in the goddam phone book every year. I like to browse the G’s with confidence.”

If you’ve lost someone, perhaps someone you’ve yet to delete out of your phone contacts, you get it.

What this woman said was the stuff of nightmares for anyone bereaved.

And I was barely 14 at the time, and in no way on a career path, much less to one as a writer.

And yet…here I am.

Don’t get me wrong. I’m grateful that I’m a writer and have the tools to give expression to both what I think, and to bring my brother back a little in this way, thereby allowing others to know him.

Also, writing helps me process. There’s a James Baldwin quote that was floating around Facebook recently that read: “When you’re writing, you’re trying to find out something which you don’t know.”

And I was like, bingo….

I have had a lot of therapy, at this point, but I’d have needed and had a lot more of it if I didn’t have writing.

But I look back on what that woman said and wonder if, like one of Macbeth’s witches, she put a curse on me, in that vulnerable moment, that I’m still compelled to carry out. Or if I would have done this anyway.

That’s the part that haunts me a bit.

Is my writing about my brother free will, or something I was tasked with many years ago?

Is it good, or bad, that I write about him still?

I could overthink (and write) this. I could say that Macbeth’s witches told him just enough truth to elicit the worst parts of his ego, or, they told him enough to set the stage for him to make choices—moral or otherwise—about the path forward. And I could try to find the links.

But I don’t know if that’s relevant. Or worth the energy. It’s just that think-y processing thing that happens when I’m writing, i.e. what Baldwin talked about.

But it’s interesting to me that when I think back on that scene, the word “wraith” comes to mind.

The definition, per Google is “a ghost or ghostlike image of someone, especially one seen shortly before or after death.” In later iterations of the definition, it’s suggested that the term mostly refers to evil spirits who have unfinished business in “the mortal realm.”

It fits Macbeth’s witches, but not this person.

This woman was very much alive during this encounter, though she is no longer alive. And I don’t think she was evil. And yet, that word….that is what my brain keeps reaching for when I think back on this encounter.

I’m not sure that there’s an answer to this question of mine, or whether, ultimately, it really matters. It’s just that the older I get, the more I wonder about those fleeting memories, which seem like they should be small, or forgettable, in the grand scheme….and yet they are what the brain hangs on to.

Is it a sensory thing? All the senses lit up, ergo it was cemented in my memory? Or was it that significant? I’ll never know. Meanwhile, I guess (I know) I will keep writing. And it seems I will keep writing about Ted.

To Boldly Go…

This week, I got an envelope in the mail from a family friend with an old article about Ted in it from Time magazine. The headline (I don’t have it in front of me at the moment) was something like Ted’s Little World. Which, knowing him, and being a journalist myself, i.e. someone who’s tasked with grasping the reality of a story, grates a bit.

Ted’s world might have been considered little if all you considered was the size of his room. That was definitely little, along the lines of 10 X 10.

But, in the more expansive notion of the world….it was anything but, as I’ve described in other posts. He had friends, fans, interests, family, an incredible sense of humor, and an ability to reach and touch people that still baffles me, given that he was an introvert.

The really funny thing about the article, though, is the picture, which I believe was a copy of a polaroid borrowed from my family, because I recognize it. In it, my brother, circa about age 13 or 14, is standing in the opening that led into his laminar air flow room, wearing jeans and a Star Trek shirt. A red shirt, for all you Trekkies out there, which, of course, does raise the question, WTF was he thinking?

Why he wore the red shirt is a mystery that may never be explained. And I wasn’t going to do this but, for all you non-Trekkies out there, here’s the explainer: in the TV series, Star Trek, officers who wore the red shirt, and went on missions to other planets or just happened to encounter unwelcome aliens on the ship, were always the ones who got bumped off.

Now you can watch any episode of Star Trek with the smug knowledge that, of the four officers beaming down to a planet, the blue and gold shirts are coming back, but the red shirt is a goner. You’re welcome.

My brother indoctrinated me in Star Trek early. I was six when he went into the hospital, and I remember sitting on the shag rug in our family room watching it on TV with him well before he went in. I’ve been watching it ever since. I think it either appeals to your, or it doesn’t. And if it does, you’re a lifer.

We were both lifers, devoted watchers and followers, with favorite characters and episodes, which we could quote, and mannerism we could emulate.

A few years back, I was coming back to NYC from LA, and in some hideously long security line, and I could see an elderly woman in a wheelchair ahead of me…and something about her hair, or the set of her shoulders, I just knew…It was Uhura, who we often first saw from the back, seated, earpiece in, surveying her screen and listening for alien communications. (I was right.)

At some point during Ted’s illness, someone developed a space suit he could wear, complete with an air pack he wore on his back, which delivered filtered air into the suit. He wore it to the concerts at the Capital Center I mentioned in an earlier post. On one occasion, he wore it to go to a Star Trek convention. I went too, of course,

The thing about the suit was, though it gave him freedom to leave the room, it was anything but inconspicuous. If you see someone walking around in ordinary life wearing a spacesuit and a helmet, you notice. People stared. It made me angry. Once a nurse in the hospital walked right up to him, stuck her face an inch from the faceplate of his helmet and said: “What is that?”

That, was my brother, and she’d just screwed up any sense of normalcy he felt, before he’d even left the hospital. I did what was in my capacity as a kid to combat the stares, giving dirty looks back to the starers. My brother just wanted to be normal. If it was apparent to me as a kid, that it was rude to stare, I figured others much older than I could figure it out, too. But they didn’t.

But the convention was different. People didn’t stare. These were Trekkies. Lots of them were in costume, themselves, and they just assumed my brother was, too. He fit right in, in fact. At one point, we got in an elevator, and some guy turned to him and said “Nice costume, man” and gave Ted the Vulcan salutation (a hand sign of greeting used by Spock, one of the main characters in the show). My brother gave him the hand sign back and nodded.

It was, quietly, such a great moment.

We went to a mock-up of the bridge. We sat in Captain Kirk’s seat. They had somehow rigged up a transporter room with mirrors that could make it appear as if you disappeared, just like on the show (though unlike on the show you were not transported to another planet). It was a magic trick, and brilliant. We saw stars from the show. Sulu appeared, wearing, not his uniform, but brown leather pants and a brown, lace-up leather vest with no shirt, and platform shoes.

I don’t remember a lot of details beyond that. The best moment was that moment in the elevator. That will stick with me forever.

But going back to the article, and the picture of my brother, and the Star Trek shirt, and the title of the article “Ted’s Little World.” I’m reminded of the intro for every show….

Space: the final frontier. These are the voyages of the starship Enterprise. Its five-year mission: to explore strange new worlds. To seek out new life and new civilizations. To boldly go where no man has gone before!

It’s ironic, really. “Little World” versus the new frontier, which was without boundaries. My brother was an explorer in his own right, figuring out how to live, unconfined, in a very confined space. I don’t think Ted was defying the writer, or the magazine and their headline, by wearing the shirt in the photo…because the photo wasn’t taken for the article. But…I do love the accidental subliminal message.

Little World, hardly.

Jay

I’ve got rule breaking on my mind today.

This morning my dad texted me to tell me that someone named Jay Freireich had died. It was not unexpected, as my dad said. He was in his early nineties…either ninety-three or ninety-four. And yet. Age doesn’t really matter (as my brother has proven) does it? What matters is the impact you made on people while you were here, I think. If you make an impact, that means that the people you leave in your wake feel it deeply, whatever your age, whether your demise is expected, or not.

Jay was an oncologist, and my father’s mentor at the National Cancer Institute. He was largely considered a loose cannon in the field of oncology. My father thought he was a loose cannon, too, when he first arrived at the NCI as a clinical associate and was assigned to Jay’s tutelage on the cancer ward.

In fact, one of his first memories of Jay was at a party, where Jay got drunk and ended up passed out in a bathtub. My dad helped carry him to his car. My dad, who says Jay was a ferocious doctor, says that Jay still beat him to the hospital the next morning, and was already making rounds on patients.

Ferocious, in this case, means passionate and all in, by the way. Not scary. If you were Jay’s patient, he did anything for you.

Jay was trying to cure leukemia in children, something that seemed impossible at the time with the limited tools they had in the sixties. Surgery and radiotherapy were the mainstays back then, and they did nothing for cancers that circulated through the bloodstream or lymphatic system. (They weren’t getting too far with these strategies with solid tumors either, in fact, because most cancers had spread by the time they were diagnosed.)

But leukemia, being a blood cancer, didn’t respond to radiotherapy or surgery. Most kids died pretty quickly after diagnosis. Often of infection or bleeding, because they lacked platelets, blood cells that create clots, and white blood cells, which fight infection.

Jay was trying to cure leukemia with the handful of drugs that were available, a very unpopular idea at the time. Medicine, as a field, considered chemotherapy drugs pointless and barbaric. The thinking was they just made people sick before they died.

But the field had only tried drugs against cancer one by one. Jay was giving them in combination, which, from a traditional medical point of view, was considered “dirty” medicine. From a traditional point of view, if you treated with several drugs at once, you didn’t know which one was having an effect. That was bad.

Jay’s point, in this case, was that you needed to treat with a combination to disable cancer cells, which are uncannily adept at adapting to and becoming resistant to single drugs. That made sense. And that was enough reason to try it. Because people were dying. You had to try something.

Science, in general, and medicine, as a field, has a reputation as being cutting edge, always on the verge of curing something. But the truth is, the field of medicine tends to be pretty conservative about changing its ideas. Sometimes that protects people. Other times, it gets in the way.

In the case of cancer, it was the latter. To say that Jay took heat for his approach is an understatement. My dad remembers him being berated at conferences, where physicians would jump up and scream at him and refer to the ward of kids being treated by Jay as a “butcher shop.”

The thing is, Jay was right.

My dad saw it quickly, and became a Jay fan. He, in fact, developed combination chemotherapy for Hodgkin’s Disease, another deadly one that tended to affect young people, shortly thereafter. This work, together with Jay’s, changed cancer treatment as we know it. Now, the idea of getting cancer chemotherapy is routine. But that’s because people like Jay and my father, who also took a fair amount of heat for what he did, dared to break rules…or, in this case, flout the accepted wisdom in medicine, censure be damned.

Jay did all kinds of other things that rubbed the field the wrong way. He found a way to do platelet transfusions to keep kids with leukemia from bleeding out, which often killed them before they could benefit from treatment. He almost got fired for it. And he broke the rules about how to give antibiotics to save kids from dying of infection before they could be treated for their disease. He gave them in combination, rather than culturing the bacteria and picking the appropriate antibiotic first. The reason: Leukemic kids with an infection often didn’t have time to wait for the lab results to come back. They might be dead by then.

Jay also created the laminar air flow room my brother eventually lived in. The rooms were invented, initially, to protect cancer patients whose blood counts were extremely low as a result of receiving chemotherapy.

That’s how my brother ended up there…My dad worked at the hospital. The rooms were there, thanks to Jay. My brother was diagnosed with aplastic anemia, a disease in which the marrow stops producing blood cells, there. A laminar air flow room was plan B, should my brother seem to be at risk living in the outside world. Plan B went into effect pretty quickly after my brother was diagnosed.

My father and I included some of the more outrageous Jay stories in the book we wrote together, The Death of Cancer. We took a little heat from it. People thought Jay would be offended, and that it perhaps an unseemly way to depict a doctor.

But Jay rather enjoyed his loose cannon reputation. And he loved to break rules. And he loved to tell stories about it. He wasn’t a reckless rule breaker. He simply called the question on isms that looked like they were based on shaky reason. And if he broke them, it was usually to serve a patient, or patients.

His take, when I interviewed him years ago, was, if you’re standing on a dock, and someone is drowning, do you watch, because you might drown too, or do you jump in and try to do something about it? Jay said he always opted to jump in. It was a no brainer for him. And he didn’t care if the field didn’t like it, or him.

He almost got fired several times for the innovations he put in place at the NCI. He was told several times to desist on the platelets problem, and went ahead anyway. He told me if they fired him for trying to do what was right he didn’t want to be there anyway.

My dad is the same kind of doctor. He doesn’t mind breaking a rule, especially if it’s on a patient’s behalf.

He has lots of Jay-like stories, himself. Sneaking a dying patient’s dog in so she could visit with it one last time. (Against the rules.) There are more, but that’s another post.

We were talking about rules and rule breaking the other day, when I was visiting my parents in Connecticut. We were remembering the head nurse on my brother’s floor…a woman I’ll only identify by her first name—Ada--because I don’t have anything flattering to say about her.

Ada loved a rule. She was a stocky, grim woman, with dark graying hair. In this era, nurses still wore caps, and which one they wore depended on where they graduated from nursing school. Hers was an incongruous lacy thing, which was in stark contrast to her rigid way of doing things. She was the kind of person that, when she walked down the hall, you got a little chill of foreboding, waiting to see what flaw she was going to hone in on. Because she looked for them.

Under her direction, one nurse, ticked at my brother, then nine or ten, for refusing to turn off his light at bedtime, took all his GI Joes, which took days to sterilize, out of his room in retaliation. My brother called home, upset. My father went into the hospital, that night, to tell that nurse she’d better not try anything like that again.

To him it was obvious….a small boy in a hospital, by himself, with the one thing he’d asked for for company, and this woman couldn’t see it. Couldn’t see the person for the rules. It was Jay’s dock….stand and watch, avoid risk, or jump into the fray, break a rule.

We broke a lot of rules, and norms, during my brother’s years in the hospital. He was only supposed to have autoclaved food, hospital food. It was awful, heated beyond belief. My mother asked the ladies in the kitchen if she could make food, have I tested for bacteria, have it autoclaved. They did it.

We had parties. Ted had too many visitors at once. We stayed past visiting hours. The dog came to visit. He had jam sessions on the cancer ward. My mother snuck the family dog, Donner, in. I regularly talked the phone operators, who had to connect calls to patients, into connecting me after hours. “You don’t understand,” I told one bemused operator one night. “Lynyrd Skynyrd’s plane crashed. He has to know!”

I used to piss Ada off regularly because I’d go visit a girl down the hall, who was far from home and had no visitors. I’d sit on the spare bed in her room, ruffling the blanket, apparently. Ada let it be known I was not to do that anymore. I kept going. The other nurses on the ward just quietly fixed the blanket.

My brother, in his own rule breaking venture, took to secreting his pills in a crack in the wall, because he didn’t think they were doing much for him. Months into this, workers came to repair the shower and were a bit surprised when an avalanche of pills flew out of the wall they opened. But my brother had made his point.

Like I said, I’ve got rule breaking on my mind, but to be honest, I’m not sure where I’m going with it. What I feel is loss, even though I did not know Jay well, and a sense of musing speculation about rules…

I mean, as a parent, I’m supposed to teach and uphold them.

But…so many, so often, seem to be based on the things that aren’t necessarily about the greater good. Maybe it makes me awful, but more often than uphold them, I teach my kids to question them and people who seem to hold on to them irrationally. Especially when they are in a position of authority (which, in their case, usually means adults). Because I find that people often cling to them as a way to feel safe, or to ensure their own power….which is no reason to cling to anything.

I’m not saying we don’t need rules at all. Or that they’re all bad. I guess we need them sometimes. I just have a lot of admiration, I confess, for the people who break them, especially in the name of humanity, or being humane to others. Here’s to Jay, rule breaker extraordinaire. A lot more people are alive because of him.

Hope

One of the things about being a kid in a tough situation, a gritty, adult, children-shouldn’t-have-to-experience this situation, is that people, i.e. adults, don’t tell them things.

It’s not ill-intentioned. They’re trying to protect them. The thing is, you can’t. Kids are young, not blind. They’re perfectly capable of noticing things going around them, and will, without being let in on what’s up, form their own (often convoluted) explanation for things.

One of the many mostly undiscussed things that mystified me as a kid was the issue of whether any one thought my brother was likely to ever come out of the “bubble” room. My parents, if it came up, just alluded to “when he got out.” My brother didn’t talk to me much about it.

Once, when he was about 15, I remember suggesting to him that he do the written part of the driver’s test, so that he’d be ready to take the driving part when he got out. He only grunted back at me. He was also doing push-ups at the time, so…shrug? I think that may have been the extent of our conversation on the subject. Then again, while we were close, I was still his younger sister, aka possibly the last one he’d confide in.

That left me squarely in the realm of reading the vibe around me. I became eerily good at reading non-verbal communication as a kid, and I’m still good at it as an adult, as a result. But in this case, I never really figured it out.

When I researched his disease, aplastic anemia, in the course of writing my first book, The Empty Room, I realized there was almost no chance he’d get out.

The odds of surviving that disease, back then, were grim. There were no treatments. Survival depended largely on not dying of an infection and the bone marrow deciding to kick into gear again and start making blood cells. This, I believe, usually happened within six months of diagnosis, if it was to happen at all.

My brother was in that room for more than eight years.

Based on this, as an adult reflecting back, I assumed my parents were basically avoiding stating the truth when they talked about “when he got out.” And that my brother, who was no fool, knew all along.

But recently, I went up to visit my parents, and I asked them whether they thought my brother thought he’d get out.

I honestly expected them to say no. To my surprise, though, they said yes. Not only did they say yes, they said it in unison, and emphatically. They did not, however, provide any explanation for why they thought that.

It honestly took me aback.

I did my first interview last week. It was with one of my brother’s best friends, Charlie Levy (more about him in another post). Charlie met Ted through their mutual friend David, who Ted had known since second grade. They bonded, initially, over the fact that they all played guitar and used to jam together. But he’d quickly become one of the extended family who populated the non-sterile half of Ted’s room during visiting hours.

I asked him if he thought Ted thought he would get out. Again, I was surprised. Emphatic yes.

“He once told me ‘The day that I get out we are going to have a monster jam. Everyone who plays guitar is going to be invited,’” Charlie said. “He really did think he was getting out. He named everybody. He’d never played with a lot of them but he knew of them. He was like ‘this guy is going to be there, and this one, and your guitar teacher’….I thought, If anybody has the brass balls to beat this and crush it and win, it’s Ted. He had every intention of getting out, getting to a great life, having a monster jam, being a professional musician, or going to college….”

This conversation brought two things to mind. One, my mother always kept this piece of Emily Dickinson’s poem, “Hope is the Thing With Feathers,” pinned to her bulletin board:

Hope is the thing with feathers

That perches in the soul,

And sings the tune without the words,

And never stops at all

The other was something my dad, who is an oncologist, told me much later, when we were working on The Death of Cancer, the book we co-wrote about his career. He said that patients always ask how long they have, and that he never answers. Not because he’s being cagey, but because you truly don’t know, and there are so many factors, including the human spirit, at play. When you tell someone a time limit, he said, you take their hope away from them.

He told me about patients who shouldn’t have survived long at all, but, against all medical odds, did, and others who were doing better, in one case in remission, even, but did not believe it, and basically wasted away and died.

Was it lack of hope? Lack of belief? Surely hope can’t keep you alive, or there’d be a lot more people surviving bad diseases.

But….what role does it play?

Hope didn’t keep my brother alive. But I think that maybe it contributed to keeping him sane, and positive, and alive in every other sense of the word, while he endured circumstances most of us can’t imagine…even during a pandemic.

It’s something to think about.

Norm, aka Kevin James

My brother’s name (Theodore) was eminently nickname-able. He went through a few versions of it before settling on Ted, and then woe be it unto you if you called him Teddy.

His friend Norm was similar, except that Norm (presumably short for Norman…I was a kid, I never asked) preferred to go by a completely different name: Kevin James.

Norm, aka Kevin James, was (and still is) a disc jockey. At that time he was on WKYS in Washington, DC. Kevin James was his name on the air.

My brother, at some point in his hospital stay, started staying up all night—it might have been a control thing (he had little control over his life other than things like this), a teenager thing (enough said), or a circadian rhythm thing (living in a “bubble” room means you never go outside and get exposed to natural patterns of daylight).

Whatever the reason, at some point, Ted must have started to listen to the radio, and to Norm, in particular. And either at an invitation to listeners to call in, or because he decided why not? Ted started to call. Regularly enough that, before long, Norm decided to pay him a visit in the hospital.

Central casting could not have produced a more bona fide hippie than Norm. His uniform was cut off denim shorts with the pockets hanging out, and a white tank top, though I seem to recall him turning up in a fur one time. (It must have been winter.) He had long brown curly hair, which he kept in line with a bandana, and wore wire rimmed glasses. He was also the nicest, warmest, person, with a beautiful melodic voice.

Norm, like lots of people, I think, came to pay one visit to the sick kid to be nice, and out of curiosity, and then, drawn in by Ted, kept coming. When my family went to the hospital at night to spend time with my brother, usually after dinner, we never knew who we’d find sitting in the non-sterile half, hanging out. Norm was one of the ones who was there often.

At some point, Abe and Irene Pollin, who owned The Capital Center, a huge venue where big concerts took place (and the local basketball team, The Washington Bullets, played), found out about my brother and started offering him sky suites to attend concerts.

My brother could leave the room wearing an astronaut type outfit with a helmet and an air pack attached, though he didn’t do it often. The Sky Suites allowed him some privacy, because people stared.

The concerts were an adventure that usually involved my parents and me and also a cadre of doctors and friends Ted invited. In this way, we managed to see a lot of the big bands of the 70’s—Crosby, Stills, and Nash, Fleetwood Mac, Led Zeppelin, Heart, and Lynyrd Skynyrd (my brother’s favorite), among them.

Sometimes we met them. Once, at a Lynyrd Skynyrd concert, my brother was sitting in the front row of the sky suite, eyeing the stage, when he was surprised by several guys climbing over the back of the seats beside him to sit next to him. The band. Truly one of the great moments of his life.

Norm took to offering up his van to transport us all to the concerts. This was no ordinary van. Outside it was gun metal gray. Typical. Inside, it was like something out of an Austen Powers’ movie, complete with zebra striped fur lining the floor and walls. I wish I had a picture of it.

We lost track of Norm after Ted died. But not long ago, he tracked my dad down for a long chat. He’s now living in California, still a DJ. He’s changed his name, officially, to Kevin James, in all realms of his life. He’s got a show six nights a week on Snoop Dog’s Cadillac Music on Dash Radio. His specialty is something he calls Slow Jam.

This is how he explains it on his website: “Slow Jams are songs that are Slow & Jam. Although predominantly R&B, other genres like Pop, Blues, and even country can make their mark as a slow Jam. The term ‘Slow Jam’ comes from the song Slow Jam on Midnight Star’s LP, No Parking on the Dance Floor.”

He told my dad he’s writing a book about his career and wants to include some stories about Ted. He wanted to know if it was okay. (My father said of course.) And he was one of the first enthusiastic responders when I reached out to ask if I could interview him about Ted.

And I was just about to call him, when an announcement popped up on his Facebook page saying that he had COVID and was in the hospital. My parents and I are anxiously checking his page for updates and hoping he’s okay. Because, even at so many years distance, he’s family.

His friend Juanita, who is posting updates, put this up: “He asked me to thank everyone for the prayers and well wishes, good vibes and to please continue to do so because he can feel them ”

If you’re of a mind to pray or send energy, please send them Kevin’s way. I’m looking forward to hearing that voice again soon. In the meantime, if you’re curious about his voice (and Slow Jam), I found this YouTube video of an interview with him.

The Road

There’s a thing I do when I’m working on a new project…I “collect” books and movies that are relevant, in some ways. For example, when I was writing The Empty Room, I read tons of memoirs that, even peripherally, mentioned sibling loss. Same for movies. They help me think and process. I have a list going for Finding Ted, too.

I used to read voraciously. Now, between kids and job and pandemic ADHD, I don’t get that much time for it, nor can I focus as well. So, reading time is precious. As is time to work on this project. So, when I found myself with an hour or so to spare before dinner one night, climbing into the bath, I knew I should be reading a book on my list. Instead, I grabbed The Road, by Cormac McCarthy.

The Road has been sitting on my bedside table since this summer. I gave it to my older son, Henry, also a voracious reader, at some point, and when he had to write a summer essay for school based on a book, he lit on that one. I’d read it before, a long time ago, and couldn’t remember it very well, other than liking the writing.

More memorable was the fact that I’d gone to see the movie version. It was 2009 and Luke was something like two weeks old when it came out. I went to one of those showings you can bring babies to (I think they were called Cry Baby Shows…) so mothers with infants can actually get out and do something once in a while.

And may I say, The Road as a feature film to which you bring an infant is a distinctly odd choice (for the theater and for me). Then again this was NYC and the east village, and I was sleep deprived.

If you’re not familiar with the story it is, in a nutshell, post-apocalyptic and unremittingly bleak. Pretty sure I staggered out of the darkness of the theater, baby strapped to my chest, Twizzlers and half-drunk diet coke in hand, thinking WTF?

But I digress. When I picked it up just now, having poached it from Henry, what I was drawn to was a line, thought by the main character. He said: “If only my heart were stone.” And I thought, word, dude. (My kids would tell me that makes me “so eighties,” btw.)

That line really gave me pause. I know I said I wanted this project to be more about life than about death and grief (for once) but….

The man utters that line right after a particularly vulnerable conversation with his son. What it made me think was how much it sucks to be a survivor, the one left behind, to make your way in the world. That landscape in the book—ashen, barren, devoid of growth. It feels like the topology of grief.

And yet he still feels, and it’s kind of a curse. Plodding, day after day in that landscape, stuck with emotions like hope and vulnerability. In that way, The Road is a good metaphor for what we often refer to as the “grief journey.”

I’m not a fan of the word journey in this context. I don’t like words that become ubiquitous like that. They become pat and meaningless. (Someday I’ll write a post about “closure”…that one really bugs me.)

But….there is something to this concept of a journey, if you try and strip the pat-ness off of the concept.

Once, years ago, my friend Nuna had a party and, as just kind of a fun thing to do, she hired a psychic to give readings. The woman set up in her daughter’s bedroom, and at some point most of the attendees rotated back there for a reading. When it was my turn she tuned into the loss of a male in my life right away, and I confirmed that I had lost a brother.

I waited for her to say something next, but it was a long time coming. Her face got red, and she started to shake, and then she burst into tears. She said, “He says to tell you thank you, that you had the harder road, going on.”

It had honestly never occurred to me before. My brother had, after all, lost his life. That seemed like a rougher road. And the process of trying to hang on to it as long as he had had not been an easy one.

But she was right. Having to be the ones to go on, in the wake of the destruction, is freaking hard work. This road, this journey, of being a survivor, we do it because what choice do we have, really? How we do it, however, varies. That does involve choice. Lots of them, actually.

At some point in surviving my brother, about when I went to college, I started to make choices about how I’d live my life in the wake of his loss, and with the grief. I tried to make them in accordance with the way he had lived, which had been ingrained in me but which I had yet (and have yet, as this project attests to) spent a lot of time really parsing out.

I decided, quite consciously, that in order for his loss to not be in vain, I had to do something with it that would make meaning of it, transform what would otherwise just be horrific pain and the abyss he’d left behind into something different. Something positive.

I honestly didn’t know how or what I’d do. I just knew that was the right path.

Sometimes I succeed, lots of times I don’t. Sometimes, though I feel that that part of my life should always be informing how I live, I forget, and find myself lost in meaningless minutia. It’s hard to keep the big picture and the mundane aspects of life in alignment all the time.

I keep trying, though. That I did learn from him. Meanwhile, I will confess, there are times that I do wish, like The Road’s protagonist, that my heart was made of stone.

New Year’s

One of the memorable events every year, in my brother’s world, were his New Year’s parties. They were never actually on New Year’s, because people tended to have other, outside world, plans on that day. Instead, they were scheduled a week or so later, to make sure that the select list of invitees could come.

Because of this slightly off timing, and this being the 70’s, the era of Polish jokes and before the idea of political correctness was even a gleam in anyone’s eye, they were referred to as Polish New Year’s parties. I know, I know. Apologies, after the fact. (Also, I was just a kid, I didn’t name them.)

The guest list was selective, with a core group of attendees, including his doctors and their families, Marc, his guitar teacher, Kevin, the DJ, and his best friend David. But there were others. To maximize the space, an accordion door, built into the wall of the non-sterile size of the room, was opened up, to allow entry to the room next door.

My mother cooked for weeks, not only to have enough food for the guests but so that they ladies in the kitchen could sterilize batches of food for my brother to have on the inside. The menu included Swedish meatballs on toothpicks, cheap champagne, and Cold Duck (a sweet wine I managed to get a swig of here and there) served in plastic champagne glasses.

My brother always dressed the same way, in my memory, in black jeans and a long sleeve black button up shirt, an ensemble we fondly referred to as his Johnny Cash look. I don’t remember specific conversations at these parties, events, or scenes. I remember the feel. People were happy. Laughing. Talking. Drinking.

There are two things I remember visually. The chafing dish, with candles underneath, keeping the tray of Swedish meatballs warm, sitting on top of the mini fridge that held my brother’s meds and the A&W root beer he used to take them. And my brother.

Sometimes, in my mind’s eye, I see him talking, half sitting on the bench that folded out from the wall on his side of the room, drinking Cold Duck. But sometimes I also see him, a quiet smile on his face, arms crossed, rocking back and forth on his heels, observing what he’d created in the outside room.

Him watching them, me watching him. It reminds me of when my kids were little. Henry was about three, and Luke was an infant. And we were walking on a trail somewhere, me with Luke strapped to my front in a carrier. As I walked, Luke would go through bouts of complaining and calming down.

Squawk, quiet. Squawk, quiet.

I couldn’t figure out what was bugging him. Then I realized. If I walked fast enough to outpace Henry for a second, so that Luke couldn’t see him, he’d squawk. Once Henry was visible again, by my side, he’d quiet down.

The mesmerizing power of the older sibling. My older brother has been out of sight for a long time. now. It’s only now, old as I am, that I’m realizing and remembering how much I watched him, and how much I learned….though I’m still just learning to articulate the latter, even to myself.

Tribe

In 2008, Seth Godin published a book called Tribes which I have, full disclosure, not yet read. That said, it was talked about a lot at the time, this idea of finding your group of like-minded people, and it stuck with me. It stuck with a lot of people, and for good reason. Aren’t we all looking for people who resonate with us? Who feel like extended family? Who feel, somehow, connected?

Here are some quotes from Godin, conveniently furnished by Amazon. (I’ve ordered the book, but felt the urge to start writing beforehand…Such is the luxury of blogging vs journalism, I guess.)

• “A tribe is a group of people connected to one another, connected to a leader, and connected to an idea.”

• “A group needs only two things to be a tribe: a shared interest and a way to communicate.”

• “Tribes need leadership. Sometimes one person leads, sometimes more. People want connection and growth and something new.

I was reminded about all this in the context of my brother, and my ongoing question of how he survived 8 years in the most extreme quarantine anyone could imagine, in a sterile “bubble” room at the National Institutes of Health.

One answer that pops up immediately is, well he had his Tribe. My memories of my brother are not of him, sitting alone in his sterile room, facing an empty abyss. They are peopled with….people. All kinds of people.

My parents and I, of course. But also his doctors, and their families, who eventually gravitated to the non-sterile side of the curtain to hang out with Ted. Nurses. The one best friend who stuck with him from diagnosis to death, and who brought in another buddy. A local disc jockey, who Ted started calling on the night shift, and who started visiting. A guitar teacher, who worked at a local guitar store Ted was able to visit, off hours, in a special spacesuit, and who then became Ted’s guitar teacher and then family. Writers. Teachers.

There were more. I remember some faces but not names. I remember stories about what people did….a doctor who lived nearby, near enough to see Ted’s window, and who used to exchange messages with him via flashlights and Morse code. That’s all I know about him. There are other people who were part of his circle I’ll never know. There are people who I learned about, only after his death, and after my first book came out, who emerged, via letters and email, to share a story about Ted.

All of these people, per Godin’s quotes above, shared one thing in common, my brother, the hub of a wheel, who inspired them with his courage, but also drew from them. As a kid, I didn’t really know what I was seeing or experiencing, just that there were all these people in our lives who showed up, as their best selves, willing and wanting to be part of Ted’s circle.

In the midst of the horror of his situation, there was this. And it was magic. My brother brought out the authentic in people, not only because he was that way himself, but because his situation, I think, so clearly, as extreme illnesses do, put everything in perspective.

And there he was, negotiating it, day in and day out. We, all of us in his Tribe, got on the bus, and learned to do it, with him. My brother was special from the get-go, but he was not so special that he knew how to do this right away. He learned it. He was angry at first, my mother tells me. Just as a lot of us are angry about what’s going on now in COVID-world. My mother likes to say, “He conquered that room.”

His Tribe helped. Looking back, I am so grateful to Ted’s Tribe, and I miss them. We all dispersed after Ted’s death, in too much pain perhaps, or maybe it was that we did not know how to cohere without our hub, my brother, holding us together. I do know that, for a time, I was part of something both wrenchingly awful and beautiful at the same time. And I miss that, awfulness and all.

There’s a line from Moby Dick (full-disclosure number 2: I never finished it) that’s something like (see, I’m even too lazy to look it up…I love blogging) “Only I have survived to tell the tale.” It’s the last man standing at the end of the book, who survives to tell the tale of Moby Dick and the boat. I used that line near the end of The Empty Room, my book about sibling loss.

I think I meant it in the sense that my parents generally chose not to talk about Ted, at the time. But I also think there was a part of me that saw myself as the sole voice, or witness, who could. And that, I now realize, is wrong.

There was his Tribe. They’ve been carrying this experience around all these years, just as I have. And I have, as I mentioned, been trying to find them, these many years later, to interview them. It is both terrifying (because I’ll probably cry—hi, how have you been since 1980, sob) and thrilling. But soon, terror or not, I’ll begin calling them.

Pyrocantha

Pyrocantha berries: They pack a punch.

I was walking down the street somewhere recently in New York City, and suddenly spied a branch adorned with some hard looking, dark green, geometrical leaves and a spray of small orange berries poking through a black wrought iron fence. It immediately took me back….

We had one of these bushes—Pyracantha (I looked it up)—on the side of our house when I was growing up. It grew just on the other side of a brick fence that defined our back yard. We used to team up, me, my brother, and the neighborhood kids, with some on one side of the fence and some inside, pelting each other with them.

For the record, they hurt. And I have no idea how we decided who won. I just remember the vicious glee with which we threw them.

I went home to Bethesda not too long ago, for the express purpose of going to my brother’s grave to hang out with him. I didn’t always like to do that, but it’s become a bit of a thing for me now.

Afterward, I drove by the old house. And found that the brick fence had been removed, leaving free egress to the backyard. The Pyracantha bush was gone, too. I felt a brief surge of outrage. But of course, new tenants can’t be expected to know the importance of old landmarks to previous ones.

But it made me think about how much history we carry within us, about places, and people, for which there are no longer landmarks. My brother’s room in the hospital was a construction zone last time I visited NIH. So much history, the most important moments of some people’s lives, poof.

It reminds me of historical battlegrounds, most of which have long since become grassy pleasant places, the only vestige of their awful past a few placards with the history embossed on them.

I want a word, or a phrase, for this phenomenon that I’m feeling….Carried history? Internalized history?

Each of us carries previous worlds, and people, inside of us. Sometimes those places and people are gone. What do you do with them?

For me, there’s an almost unbearable urge to tell the story. Maybe it’s my way of creating a new landscape. Or a stage set, peopled with my players, where they carry on indefinitely. I’ve always had a problem with endings in books and in plays. Maybe that’s because I don’t really think, in real life, that there are any.

How Finding Ted Got Started

Ever since this pandemic started, I have had the persistent, pressing, urgent, need to visit my brother. I could not explain it to myself, or others, without sounding crazy. For one, I live in New York City, where the pandemic initially raged. My brother resides in Maryland. Travel made no sense, under, the circumstances. No one wanted New Yorkers crossing their borders, and no form of travel was without risk. And, technically, whatever it was I needed from him could wait, had already waited. My brother has been dead for forty years.

I was 6, my brother, Ted, 9, when he was diagnosed with a rare immune deficiency disease called aplastic anemia, which shuts down the bone marrow, where all red and white blood cells and platelets are produced. There was no cure. Most people died within six months, from infection. The long shot hope was that his immune system would miraculously kick in again, as it sometimes does with this disease.

At first, my parents tried to keep him at home. But one night, shortly after his diagnosis, in early September of 1972, he spiked a fever, putting plan B into effect. On September 7th, 1972, just shy of his 10th birthday, Ted walked into a sterile room, aka a bubble room, on the 13th floor of the National Institutes of Health in Bethesda, Maryland.

He hoped he’d be out by his 10th birthday, a little less than a month away. He wasn’t. He lived in that sterile environment, protected from germs but also isolated from the outside world, for 8 1/2 years. His immune system never kicked in again. He died, at 17, of heart failure brought on by too many blood transfusions, which had caused an iron overload in his heart.

I’ve written a lot, in the ensuing years, about loss. Sibling loss, to be specific. I wrote a book, in fact, part memoir, part reporting, called “The Empty Room,” that tells my story and those of other bereft siblings. I’ve sat on panels at grief conferences. I’ve written chapters for books on sibling loss. I have a posse of friends with whom I share this loss in common, and who support me, and vice versa, on the tough days.

But it wasn’t until this pandemic happened, and we all started living a version of Ted’s life, isolated, protected or protecting others, behind masks and gloves, lest infection creep in, that it occurred to me how much time I’d spent ruminating over his loss, and how little time I’d spent unpacking how he’d lived. How he did it.

My brother’s room measured about ten feet by ten feet, with a bed, a desk, a shower, and chair with a bedpan built into it. It was separated off from the “normal” half of the room by a clear plastic curtain. There was an opening, a door-sized gap, to enter his side of the room. One wall, on his side, served as an uber-ventilation system, pushing all airborne germs out.

My brother did not come out, except on rare occasions in a spacesuit complete with helmet and backpack style air filtration system. Only nurses and doctors, dressed from head to toe in gowns and masks and paper booties, were allowed in. His food had to be sterilized at high heat before he could consume it, which made it barely edible.

It was much worse than what we are living now. Yes, we wear masks, and sometimes gloves. Yes, some things are shut down. We fear getting sick, of dying. We are weary of having our liberties curtailed. We miss our lives. We miss our friends. We miss normalcy.

Some of us rebel more than others, insist that we cannot, will not, be inconvenienced. The baking projects, and self-care, the knitting patterns, that so enamored us for a time, have lost their allure. We’re so tired of it. The news is full of stories about the epidemic of depression and loneliness we are facing as a country, speculating about the coming mental health crisis.

But me, all this time, I’ve been marveling that my brother, this boy, lived this kind of life alone and with a grace that, as I think back upon it, takes my breath away.

Here’s what I remember about my brother: his humor, his kindness, his silliness, his absolute unquenchable curiosity and thirst for learning, his love for reading, his passion for a project, whether it was mastering the guitar (which he did), starting a hospital newspaper (also did), writing a play (did), or memorizing pages and pages of Poe and Shakespeare just because he liked the sound of the words.

People came to visit—DJs, astronauts, authors—-with the intention of dropping in on a sick kid to do a good deed. And then they came back. Again and again. Until something of a salon had formed in the normal half of my brother’s room. Walk in on any given day and you never knew who you’d find. He was never bored, or boring. He loved life, and he found a way to live it, even in what anyone would consider impossible circumstances.

When he died, with IVs in both his hands and feet, and a line into a central artery in his neck, he fought to stay. Unfortunately, his body wasn’t up to it.

How did he do it? Live in what was essentially extreme quarantine for nearly nine years? To be honest, I don’t know. I was 6 when he got sick, and 14 when he died. And while he and his life, my childhood in the hospital, the people who came to his room, are etched into my being, it’s not an easy thing to unpack.

He was my older brother, a fait accomplit. I accepted him as he was, took him for granted as he was. That he might have evolved into the person he became, over those years, was not something I thought about.

Four months into the pandemic I did drive down to Maryland and go to his grave. I brushed the leaves off his stone. I put daisies, my mother’s favorite flower, in his vase. I read to him, as he once had to me. And I asked him how he did it. And, of course, miraculous as he’d been in life, there was no way he could answer me.

I was still happy I’d gone. I’d needed to feel near him again, even if only to his grave.

As I’ve thought about how to understand him, since, and how to tell his story, I’ve wondered how I could ever do it. He’s not here to provide answers. And while I was witness to his life, I was also a kid, and probably missed a lot.

Then it occurred to me how many others had interacted with him, too. The doctors, nurses, friends, relatives, authors, DJs, musicians, among others. I had heard from many of them after The Empty Room was published. Many were people I’d never met, who had relationship with my brother that took place over daily blood counts, or visits while I was in school.

I was not, I realized, the sole owner of his memory. There’d been so many others who witnessed his life, too.

And so I started to Google, and look for email addresses, and search Facebook, for long ago names I remembered. And the response I got, from all I invited to join in on this project, to be interviewed and to share stories about Ted, was an unequivocal yes.

Welcome to the Ted project.