February 7, 2018…And The Days After

One year ago today, the gray sky of the previous day released a storm of sleet and slush. The streets were a patchwork of ice and my driveway was its own dangerous, slippery obstacle course. And still, people came for the second day of shiva. Still, people came for Matt.

My memory of this second day of shiva is just as blurry as the first day. I can’t remember most of the day save for the time spent worrying that there wasn’t enough ice-melting salt on the front steps. I can’t remember what I felt or thought, who I spoke to or what I said. I can’t remember if I’d begun to acknowledge this was reality or if I still believed I was playing a role in someone else’s tragic story. Given how much I enjoy stories, I suspect the latter is true.

One year ago today, the last of the shiva guests left, the food was cleared from the tables, and our story—mine and Matt’s—came to a close.

Every story—fictional or not—is made up of decisions and micro-decisions. Looking back, it’s easy to wonder what if—as in, what if we hadn’t gone to Duke, what if we’d listened to Hackensack when they’d told us to abandon the poliovirus, what if we’d pushed for a second spinal MRI sooner, what if I’d realized Matt was downing Costco-sized bottles of Advil. I don’t dwell in what ifs now—I recognize that our story, with all its twists and turns, won’t be changed by asking what if. I know I can’t even attempt to write a new story for G, H, and me if I’m trapped in a web of what ifs. But I didn’t learn that lesson easily. In the days after—after February 3rd, after the funeral and after the kids went back to school—I did ask what if; and I couldn’t stop asking what if. I obsessed over the what ifs, let the guilt of what if consume me. I wondered, in the most irrational of my what if spirals, whether Matt was somehow angry with me.

In the days after, I became sure Matt was angry with me. I told a friend my fear, and cited—as proof of Matt’s anger—that as I’d been driving home from somewhere and thinking of all the things I could have done better, a sheet of ice had torn off the top of a truck and crashed into my windshield hard enough to make my car swerve. I told her it was irrefutable proof that Matt was angry. My friend, in all her wisdom, told me no. She said if anything, Matt was angry that I was letting guilt consume me. She said, the ice was a sign that I needed to stop blaming myself and start paying attention to the road in front of me.

The moment she said that, I knew it was true. The Matt I knew, the Matt I married, didn’t hold grudges and lay blame, instead he found a way forward—talked his way to the front of the line, into that airplane seat–every time. The Matt I married knew I’d done my best, and my best was all I could do. That day, I stopped asking what if.

When the gray sky finally gave way to sun, G and H returned to school. I tried to return to real life—I picked up the clothes that had been left at the dry cleaner’s for months, I bought Valentine’s cards for G’s and H’s classes, I finally sorted through the obscenely large pile of mail that hadn’t been touched in too long. It was all that normal I’d been craving for months—only distorted. Overwhelmingly, it felt as if some war had ended; and we were the losers, left to pick up the pieces, to make a life out of the rubble.

For the last year, we (G, H, and I) have been picking up the pieces to rebuild a life out of the rubble, and this project has helped immensely. It has given me a tether to the past when I needed one. It has given me a reason to feel like our story—mine and Matt’s— hadn’t yet ended when I hadn’t been ready to accept that truth. Whether a post took me thirty minutes to write or three hours (depending on the day and the story that needed to be shared), the minutes and hours writing has given me more time with Matt, even if just in my head.

I’ve known since the beginning of this project that I cannot stay tethered to the past. I don’t know that I’m ready to release the tether, but I also don’t know if I’ll ever be ready. Like I said, the past is safe. The past has Matt, the random boy I met in a club fourteen years ago, the boy I promised to love in sickness and in health, the boy with whom I was in this no matter what. Maybe the truth is that I’ll always hold on to that tether in some way, and maybe that’s okay. Maybe it’s okay, as long as I also give myself the space and time to write new stories. And while the phrase “new stories” will always feel like a betrayal, I also know I wouldn’t have the courage to write any stories if it wasn’t for Matt—the boy who challenged me and loved me and believed in me with all his heart and soul. The boy who encouraged me to pick up a pen and start writing. Not the contradictions of brain cancer, but the contradictions of love and loss.

There’s something bittersweet about writing this final post—and I suspect there will be a different kind of feeling of loss tomorrow morning when I wake up and don’t press “publish” to post a one year ago today story. But unlike one year ago today, which was marked by turmoil and uncertainty, the overwhelming feeling I have this morning, in writing this final post, is peace. I have no words left in this story and I don’t regret any of the words I’ve given to this story. If I can get my social media act together, I will try to keep posting Post Hope stories on Instagram (@elainesara)…but I can’t promise I’ll have anything worthwhile or interesting to say. Everything I wanted to say about our Year of Hope has been said—almost. I have one Year of Hope story left.

After the shiva, after the ice storm had ended, after everyone had gone home and the kids had gone to bed, I took the garbage out to the curb—a job that had always belonged to Matt. The driveway was still a dangerous patchwork of ice and I kept my attention down to avoid slipping. I should have rushed inside out of the cold, but I didn’t. For a moment, I paused on the driveway. With no family around, no friends or kids to be strong for, I paused. No cars drove past. The neighbor’s lights were off, and it felt as if I was the only person awake in the world. I remember feeling tiny surrounded by all that quiet, empty space, too small and too alone to take on this life that we (Matt and I) had designed for the two of us. I took in a breath and exhaled. As my breath billowed out in front of me, a puff of white on a dark night, I looked up.

Against an ink black sky, that night, I saw a thousand stars. A thousand sparkling stars each perfectly illuminated and brighter than I’d ever seen—brighter than should be possible in the tristate area. In that bitter cold darkness, it felt like magic. It felt like Matt (which is cheesy, but nevertheless true). It felt like a reason to believe in the promise of a bright day.

What is left after hope vanishes? There’s gratitude and kindnessfriendship and loyalty and love. And also, always, hope. The truth is that the question was inherently flawed, maybe misleading. In this story, hope never truly vanished. It found a way to keep burning, slowly and quietly in the darkest parts of this story. Hope found a way to light up even that darkest night sky.

February 6, 2018: Funeral

Matt and I didn’t share too much of our story as we lived it. In the beginning, Matt downplayed what he was going through—he didn’t want pity or special treatment; he wanted to feel like himself whenever he could. As our story kept sliding into those darker days, our world slowly shrank until we were surrounded by doctors and nurses more often than friends. Whether by accident or inaction, we let our world shrink.

On February 6, 2018, our world expanded–exploded–in size once again. More than six hundred people—family, friends, business associates, teachers from G’s and H’s school—arrived at a funeral home in northern New Jersey to say good-bye to Matt. I remember hoping Matt could see all those people packed into the funeral home. In his last months, whenever I’d ask Matt whether he’d updated any of his friends on his health or his latest treatment, he’d often shake his head and say nobody cares, anymore. He’d say, “it’s old news.” Not because he believed his friends truly didn’t care, but because he didn’t want to worry anyone—that strength of conviction; he was so sure he’d be fine that he believed there was no need to cause others to panic. One year ago today, I remember hoping he could somehow see proof of how much everyone truly did care.

February 6, 2018 is mostly a blur. I remember seeing Matt one last time and thinking—that’s not him. That’s not the man I married, the one who I had weaved into every dream I had for the future. My brain once again rejected the idea that Matt was gone. I remember watching G and H sitting on a couch in the funeral home, playing on their iPads as friends and family arrived and expressed their condolences. I remember that invisible curtain growing thicker, making voices harder to hear and faces harder to recognize–I stopped being able to recognize people I’d known my whole life.

I don’t remember much of the eulogies. I remember Matt’s dad managed a few jokes and acknowledged the moms in town who’d propped me (and us, our family of four) up for so many weeks and months. I remember the rabbi, the same one who’d married Matt and I nearly a decade earlier, and feeling grateful that someone who had seen Matt grow up could speak about him. I remember G giving an impromptu eulogy, her words no doubt the only ones remembered by anyone in attendance. She said simply, “I loved playing basketball with my daddy.”

I don’t remember the eulogy I gave. I remember thinking I’m not the one who gives speeches for us—that’s Matt’s job. I remember, as I wrote the eulogy the night before, thinking there was nothing I could say that would do justice to Matt or what he’d been through, the strength he’d shown or the grace with which he’d fought. There was no way to distill it all into a short speech. I remember I read something to that crowd of six hundred and knew it wasn’t enough.

Afterward, at the cemetery, at some point in the blur of it all, the invisible curtain that had been protecting me from reality lifted. And without that protective layer, I felt every single thing I’d been pushing away all day—maybe even every single thing I’d been pushing away for the last twenty months, during every MRI and every hospital visit, during every harsh word and every time Matt looked up to me and asked why he was confused.

People tried to comfort me, my aunt hugged me, my brother-in-law patted my back, but I didn’t want comfort, I wanted a do-over. I wanted to wake up from this nightmare. Or if not that, I wanted to scream and never stop. As my heart rate climbed to nearly two hundred, I tried to breathe, to stop the breakdown because I couldn’t break, not in front of everyone. But there simply wasn’t enough air. I walked away to breathe, to find some air, but the sobs came, anyway. And the heartache poured in, and that terrible darkness descended. It was a raw pain like I’d never known before or since, like my heart and soul were cracking open. I don’t know how to survive a pain like that.

On the way back to my house for the shiva, I knew I needed to numb that pain—I’d have to face it eventually, but not all at once and not like that; it was simply too much; it hurt too much. Luckily, my uncle brought wine—and maybe there was a better choice, but maybe not. After all, in grief, sometimes the only choice is the choice to survive.

Days earlier, I had said that I wanted everybody—everybody whose life had been even slightly touched by Matt—to come to the shiva. My request was honored. For hours, the house was full of people who loved Matt, eating and drinking and sharing stories about him. G had a gaggle of school friends to play with who dyed their hair various shades of pink and purple; H had a few friends who he herded to his room in between long bouts of quiet time. Thanks to the wine and the shock and the absolute impossibility of it all, I have nearly no other memories from the shiva.

Afterward, someone said to me that they’d never been to a shiva that was like a house party. For days, I worried I hadn’t hit the right somber tone; maybe I’d numbed the emotion too much, maybe I’d shut down too much—a character flaw of mine. And maybe all of that meant I hadn’t honored Matt appropriately. The idea that I should have done something differently ate away at me. But the more I thought about the shiva—how everyone Matt loved, how everyone he’d kept in his orbit, came together and found a little joy in each other’s company—the more I was sure there was no better way to honor Matt. He wouldn’t want heartache and tears, he’d want a party, ideally with a fun theme and rhyming name.

When I gave Matt’s eulogy one year ago today, I knew it wasn’t enough. There was so much more I wanted to say about him and about us—our origin story—and the fight we’d put up against that invisible monster. But I didn’t yet have the words. And when I found the words–more than 160,000 of them, apparently–I knew I wouldn’t be able to fit them into a single speech. I didn’t realize when I started this project that I was also writing a kind of eulogy. This was the extended eulogy Matt deserved. And I’m so grateful I had the chance to give it.

February 5, 2018: Restless

In the days after February 3rd, there was grief and despair and heartache, all the turmoil that was to be expected after a death, but, there was also something else, which was unexpected and surprising and, at times, more overwhelming than the grief and despair and heartache combined. There was a restlessness that struck in the days after February 3rd. Half of my brain was so used to being hyper-focused on Matt, and it no longer needed to be; and I didn’t know what to do with myself, what to do with that reserve of mental space and energy that had for so long been devoted purely to Matt. For the first time in months, I didn’t have to rush to Matt–I didn’t even know where exactly he was and who was with him. I didn’t have a nurse to call for a status update; he didn’t need to be checked on. Matt didn’t need me anymore and I wasn’t sure exactly who I was anymore if I wasn’t defined by taking care of Matt. The–maybe final–cruelty of brain cancer: losing your person while losing yourself.

These were the rawest days, the blurriest days, when I walked around the house and couldn’t remember what I did before brain cancer violated our life. These were the days when it felt as if an invisible curtain had fallen between me and the rest of the world, and I was seeing and hearing everything but as if through a filter. These were the days when I was sure something was wrong with my brain because it kept rejecting the idea that Matt was gone.

I remember the overwhelming certainty that someone had made a mistake—and maybe that someone was me. Maybe I had made a mistake in that quiet room in that low light and Matt wasn’t really gone; and if he wasn’t really gone, then we shouldn’t talk about death and funerals because that was morbid, and Matt and I never talked about death—we only talked about cures and miracles.

One year ago today, with no Matt to rush to, my mom and I took G and H to Target for the sole purpose of letting them pick out a toy that might make them smile for a little while. I remember walking through the aisles, looking at the other customers pushing their carts and thinking they had no idea that my world—our world—had crashed and shattered beyond repair, that I was a walking shell of a person among them. And  I remember thinking how impossibly hard it was to walk around bearing the full weight of this story on my own—this story, which was full of triumphs and struggles, hopes and heartbreaks, this story which was so huge, and yet known by so few.

Some have said I’m brave for sharing our story. But I’m sure it’s the opposite. I think it’s easier to release the weight of this story day by day than walk around with the heaviness of it in my head. It’s easier for me to expose this story to the light, than to keep it in the dark. It was too hard to keep this story inside; the weight of it would have kept me anchored in those darkest days. I think, actually, it’s everyone who has followed along—so many since the beginning—that is brave, because this story, while full of hope, is tragic, and too many days hurt too much. And I think it’s brave to listen to someone else’s story with an open heart. I think it’s brave to give someone time and space to tell her heavy story. I think all of that is brave.

Two more stories remain in this project, two more days after today. Thank you so much for listening, for allowing me the space and time to tell this story; it made each day of an unbearable year more bearable.

February 4, 2018: Matt Glo

Throughout this story, there have been so many days that are meaningful one year after the next, so many days wherein coincidences pile on to each other. On July 3rd, the day Matt’s third tumor was discovered at Duke (and exactly seven months before February 3rd),  he and I saw three rainbows in the sky. On November 21 2017, the doctor at Duke ignited a nearly inextinguishable flame of hope and exactly one year later, on November 21, 2018, she almost—only almost—extinguished it. November 15, 2016, the day I saw our first rainbow while driving to Matt’s MRI was also the day, two years later, when we spent most of the night inside the emergency room at Columbia, waiting for the MRI that would tell us the disease had spread into the folds of Matt’s brain.

There are other days, other coincidences: rainbows appearing over head at the three month Post Hope mark and appearing on my driveway at the six month mark; embers burning in the sky on January 23rd, the day the last glimmer of hope burned away.

And then there’s this date. Fourteen years ago today, on February 4, 2005, a friend convinced me to go out in the city. We bought (probably overpriced and unnecessary) tickets from a club promoter for a club called Glo in the Meatpacking District. I wore a red, strapless, sequined top—which is still hanging in my closet—and enjoyed (what I still think of as) the best hair day of my life.

Once inside, I looked across the dance floor and saw a boy in a brown leather jacket, and my heart skipped a beat or twelve. We made eye contact and then he came over to talk to me. He bought me a drink, and then, as his friends were leaving, he handed me his business card—he was in the toilet seat business—and he asked for my number.

A few days later, he called and left a voicemail. He introduced himself, said some things I can’t remember, and then said something that was so purely him—made of honesty and humor, confidence and a little bit of something uniquely him. He said, “If you’re the kind of girl who plays games, don’t bother calling me back.”

With a smile and a fair amount of bewilderment—because who leaves a message like that?—I saved his number in my phone as “Matt Glo,” and called him back. I would learn, later, that after Matt left that message, he called his sister and told her he’d just left the “wackest” voicemail for a girl and no way was she calling back. I think I loved him from the first time I heard him say “wackest.”

Fourteen years ago today, I saw a boy in a brown leather jacket across a dance floor and my entire life changed direction. They (whoever they are) say you’re not supposed to meet your husband in a club, but I did.

One year ago today, I woke up as that boy’s widow and had the job of telling our two children that he was gone.  There may be no worse words to ever have to speak. As a mother, my job was to protect them, but from this I couldn’t. They cried and responded in ways that have become all too familiar this past year. G, who was vocal about her grief from the beginning, flopped onto the bed in tears. She let me talk to her, she let me sit beside her. But H—he shut down. He walked to the playroom and played with his action figures by himself, declining any company, only eventually agreeing to a long hug. And I learned that no matter how hard you hug a child, you can’t absorb their sadness, you can’t save them from heartache despite your best intentions. The cruelty of brain cancer and the cruelty of grief: you can’t will any of it away.

Yesterday, this story reached another first. It was the first time I couldn’t say it was our first Superbowl without Matt. Yesterday, we officially entered into the year of seconds. We officially have to acknowledge that Matt isn’t coming back—maybe that should have happened months ago, and yet…easier said than done, I suppose. Maybe because it’s easier to live in the past—the past is finite and certain. Sad, but sad in a way that is familiar and known. The same cannot be said about the present or the future. There is nothing finite or certain, nothing is promised—and that’s simply terrifying.

Yesterday, G, H, and I celebrated Matt as best we could. We went to breakfast at his favorite local restaurant, we painted pottery in his favorite colors, and we watched (somewhat paid attention to) the Superbowl. I kept searching for something—a rainbow, a bit of magic, something to mark the day as meaningful. I couldn’t find anything. But at one point, H looked up into the sky and saw three geese flying above us. He said it was a message from Daddy. I was skeptical—geese aren’t as magical as rainbows, after all, but I nodded and agreed, anyway. But in retrospect, maybe H was right. Maybe the truth of this story is this: there will always be a little magic, if you choose to see it. Just like there will always be a little hope, if you choose to look for it.

February 3, 2018

February 3, 2018 started with plans for the next day. G and H had an art therapy session in the morning, and during that session, the therapist suggested we make a family art project. She planned to come to hospice the next day, Sunday the 4th, so we could create something with all four of our handprints. One last family activity. One more item to add to the list of things we (our family of four) wouldn’t get to do together.

After therapy, we (G, H, and I)  had a few quiet hours with Matt. When Matt’s lips looked chapped the nurses gave me Chapstick for him. I told them I couldn’t do it; one week earlier, I’d hurt him applying Chapstick. I couldn’t risk hurting him again. They encouraged me to do it, anyway, and promised me that Matt wasn’t feeling any pain. I don’t know whether I was brave enough to put on that Chapstick. I can’t remember, but I have my suspicions.

Afterward, once visitors began to arrive, the day shuffled forward like all the other days in hospice, with rounds of Uno and Hangman and Tic-Tac-Toe, with a mix of family and close family friends, with chatter and a few tears, and sometimes with a bit of laughter. Over the previous week, nearly all of Matt’s closest family had come—parents and sisters, sisters-in-law and brothers-in-law, mother-in-law and aunts and uncles and cousins. I hope Matt heard all those voices, felt all the love that filled that quiet sunny room at the end of the hall. I hope he knew it was all for him.

Slowly, one after another, the visitors left. Last to leave were G and H, who left with Matt’s sisters and brother-in-law. Unlike other days and nights when H had been confronted with the idea of separating from me, he didn’t balk at the idea; he didn’t cling to me and confirm I’d be home soon. Both G and H were looking forward to playing with their baby cousin who’d been waiting for them at Grandma’s house.

By 5:50 p.m., the sun had set and Matt and I were alone. I settled into a chair beside him, grateful for a few hours together. I turned on an audiobook to fill the suddenly too quiet space—and I could almost swear that Matt made a displeased face, which is maybe true or maybe just the side effect of too much emotion and not enough sleep. I closed the book and didn’t turn anything on after that. I just sat beside him.

My plan had been to be home for G’s and H’s bedtime. Though they were happy to leave earlier, I wanted them to have the consistency of a parent around. That need assessment—it seemed important that G and H had that steady presence everyday. But also, honestly—because especially today, this story deserves honesty—after a long day full of too many emotions, I wanted nothing more than to wrap my arms around G and H, to listen to their stories and see their smiles. Around 7:45, I walked out of Matt’s room, out of hospice, and stepped into my car. I started the engine, put the gear into drive, and made it halfway to the end of the parking lot before the first sob broke free. For reasons I can’t pin down, some part of my heart knew I’d made the wrong choice, I’d incorrectly assessed need. G and H were happy with their aunt and uncle, and they didn’t need me. But Matt did.

I parked the car and returned to Matt’s room, to the curious stares of the night nurses. I told them I just wanted to stay a bit longer. They offered me a blanket and said the words I’d heard too many times before: you’re too young to be here. I said we (Matt and I) are both too young to be here.

In books, in movies, when one character is barely hanging on to this life, the other character—wife, husband, soulmate—always gives permission to go. Maybe I’d read too many books and watched too many movies, but I thought maybe I was supposed to say something, give Matt permission to stop fighting after he’d fought so hard for so long. But I couldn’t get the words out. At the end of it all, I was too selfish to give Matt permission—and Matt had never truly needed my permission for anything before, anyway.

Instead, I told Matt this truth, which was the truth at the heart of our too short relationship. I told him that I’d always trusted him more than I’d trusted myself, and because of that, I would trust him now. I told him that if it was too hard—if it hurt too much and he was too tired and he needed to go—then I would support whatever choice he made. Despite all we’d been through—the cracks and shifts in our relationship—a kernel of us, our dynamic, remained and Matt was still the person I looked to for answers. I told him my only request was that I was there with him if he chose to leave, because I didn’t want him to be alone. Not ever, but especially not in this.

We sat together for something that might have been an hour or a lifetime. Only a single lamp lit the room. Only our breath filled the silence. And then, nothing—a hollow, aching, endless nothing. Matt’s next breath didn’t come. The moment I’d dreaded had come, and though I should have been prepared, I wasn’t. Because it was impossible to prepare for a moment that was as simple as a breath followed by a beat of silence, as infinitely complex as a breath and then a void.

The next minutes and hours are a blur in my memory. I called in the nurses—maybe for help, maybe to prove that I was overreacting. They confirmed the worst had happened and asked whether I wanted to call anyone. What followed was the worst phone call I’ve ever had to make.

I don’t know how much time passed before anyone arrived. Matt’s parents came. My mom and sister came. I don’t know what we did or said. We sat and stood for hours, mostly in silent vigil, as the unimaginable unfolded before us, as the unimaginable slowly took shape and form and became reality.

After twenty months, during which Matt never uttered a word of complaint, on February 3, 2018, at 9:37 p.m., Matt’s fight against that invisible monster ended. We lost. We weren’t supposed to lose, but we did.

Today is, unsurprisingly, hard to write. I want to find words that are sweeping and meaningful enough to explain February 3rd and I can’t. I can’t do more than tell the story, maybe because the words I need to explain February 3rd don’t exist or maybe because the grief has once again stolen my words–it’s been a year without Matt and that truth hurts too much for words. Maybe I’m still only able to scrape the surface of this heartache, which sometimes seems bottomless.

Months ago, I promised to try and soften the sharpest edges of this story, to show the moments that lit the way back to hope. Which is why there are a few more days of stories left to tell. There’s a little more light and love to be found.


After lighting a candle for Matt last night, G, H, and I looked up at the sky and saw this…a sky streaked pink with promise.

February 2, 2018: The Day Before

G woke up not feeling well on February 2, 2018. She was tired and cold, but not feverish, and after an internal debate that raged into the first minutes of the school day, I decided to let her spend the day at home. Or more accurately, at my sister’s house, because even without knowing that I could count the hours and minutes we had left together, I couldn’t be away from Matt for an entire day.

I texted a friend to tell her that Matt’s breathing was more even than it had been the day before. I was no longer assessing our days in terms of upswings and down cycles, or steps forward and back, but studying Matt, overanalyzing his every breath, was habit. And the measurement became simply this: if his breathing was more even than the day before, then my breathing was more even than it had been the day before.

I don’t remember much of this day, the logistics that went into getting H to and from school and G to and from my sister’s. I know by the afternoon, G had napped and fought off whatever bug might have been brewing, and we (G, H, and I) spent the afternoon and evening with Matt. We brought in quesadillas from Chipotle (one of the few things H was willing to eat during these days—sometimes still the only thing he is willing to eat) and I don’t remember the rest. How we arranged ourselves on the furniture in that quiet room and the things we talked about are memories that have faded into the blur of this final week.

It’s only in hindsight that I know February 2, 2018 was our last family dinner.

When a storm is coming, when the weather forecasters are issuing warnings for blizzards or hurricanes, sometimes the sun is still shining, still filtering into a quiet room with a courtyard view. The dark cloud isn’t even a blip on the horizon, and it’s almost hard to believe a storm is barreling toward you. And yet, you know it’s coming, and you know you’re helpless to stop it, so you prepare despite the sunshine and the clear horizon. You gather supplies and prop up shutters to protect your most vulnerable planes, and you wait, defenseless against mother nature. Maybe you hope the forecasters were wrong and the storm will miss you. Maybe you just breathe and stare at the sky, waiting for a change, maybe waiting for a rainbow.

Sometimes it’s easy to weather the storm. But sometimes it’s not. Sometimes, the storm is too strong. Sometimes, the storm whips away all your supplies and breaks down all your shutters and there is nothing left—there is nothing left between you and that storm. So you face it, head-on, because you have no other choice. And you hope you don’t break. And you hope if you do, there will be someone to catch you.

February 2, 2018 was the day before the storm.

February 1, 2018: Nothing Compared To This

One year ago today, I texted a friend and said: This [this sitting beside Matt’s beside doing nothing but waiting for him to take his last breath] is a whole new kind of torture. All the hard days and months were nothing compared to this.

One year ago today, the days of inaction, of waiting, of watching Matt’s vitals falter and waiver and strengthen and steady, all the while not knowing whether I was hoping for him to live—because how could I not hope for him to live—or whether I was hoping for him to go—because he would not want this existence, which wasn’t even a life, anymore.

The days were wearing on G and H, too. School gave them a few hours of distraction, but I’m not sure whether that sunny, quiet room was ever far from their minds. Their sleep patterns and eating patterns had changed, which was to be expected. Their grief and rage came in unpredictable bursts, which I could understand. Mine did as well. Sometimes the bright shock of that anger was the only way I knew to keep from disappearing into that Post Hope darkness. Maybe it was the same for G and H.

Most of the time—maybe all of the time—that anger was irrational. Directed at Columbia for failing to get him to hospice on time, because if they had, maybe Matt would have been awake. At Duke, because it was supposed to be the best brain cancer center in the world and poliovirus was supposed to be a miracle, and it failed Matt miserably. At all the doctors, who didn’t see what was happening in Matt’s spine, despite all the evidence. At myself, for qualifying my suspicions with “I may just be the crazy wife, but…” But mostly, I was angry at the world, at the universe, at the sun and the moon and all that infinite space in between—because this wasn’t supposed to be our story or our ending and someone somewhere made a terrible mistake.

February is a difficult milestone to reach in Post Hope. February is the month I started with Matt and finished alone. It’s the month that I learned what it felt like to truly crash into that darkness, give in to that hopelessness. It’s a month that this year has snuck up on me, which seems impossible because every day in Post Hope has been measured against February 3rd and every post written for this project has been leading to February 3rd, but impossible has never meant untrue in this story. Waking up to February on the calendar is not like drowning in a grief wave–that seems too kinetic for this, which feels more like a settling. Maybe waking up to February on the calendar feels like sinking and stabilizing into the unforgiving weight of an absence.

If every month has had a theme, then the theme of February is, inevitably, loss. The stories left to tell in February are sad, because this story does not have a happy ending, but this project has never been only about the tragedy of  brain cancer. The story has always been one of a hope that burned so bright, it managed to flicker even in the darkest of nights. The story of that darkest night and that flickering hope is the story left to tell. What remains after hope disappears is the question waiting to be answered.

January 31, 2018: In The Moment

January 31, 2018 marked Matt’s fifth full day in hospice. Five days of sitting by his bedside, of measuring breaths, of helplessness and hopelessness, and waiting to wake from a nightmare. Five days of reflecting on all the things we had done and all the things we hadn’t had a chance to do. Five days of not knowing whether there would be a tomorrow.

There isn’t much left to write about these days. When I undertook this project more than three hundred days ago, I knew that there wouldn’t be much to say during hospice week, this week when there was nothing left to fight for and time all but stood still. There were funeral plans to make and logistics to configure, but I didn’t—couldn’t—make those plans or configure those logistics. Those kinds of decisions—about the casket and service and rabbi—I knew would simply shatter the fragile strength I’d summoned to make it through these weeks.

Maybe it was a kind of cowardice. Maybe it was my final act of denial. Or maybe it was simply survival, self-preservation. But, save for confirming that I wanted all of Matt’s friends—near and far—to come to his service and shiva, I couldn’t allow myself to see past the moment we were in. For twenty months I’d done nothing but look ahead, either waiting for the other shoe to drop or for the next upswing to sweep us back into a place where we could breathe, but now I couldn’t see beyond that quiet, sunny room.

And I didn’t have to. As I had so many times during the previous twenty months, I found myself grateful for the people who surrounded me. Because when I didn’t have the strength, Matt’s parents took over planning the details. They found a reserve of strength to make those decisions that I couldn’t, and in doing so, they gave me the gift of living in the moment with Matt beside me, rather than looking into that bleak future. It’s a gift I don’t think I could ever repay.

One year ago today, I didn’t know it would be Matt’s last Wednesday. I didn’t know we had three more days left. And I didn’t know how we (G, H, and I) were going to survive, if we even could survive a life with a Matt-sized hole in it. A too large part of me wasn’t sure we could.

Yesterday, I took G and H to the art therapist for their weekly appointment. The therapist invited me into the room and we decorated rocks to place on Matt’s headstone when we visit on the 3rd.  I don’t know that I’m allowed to share what G and H wrote on their rocks—I didn’t ask and wouldn’t want to assume—but the message H wrote to Matt, the thing he wanted his dad to know most of all after a year in Post Hope, confirmed that we had done more than survive this first year. And I don’t think that’s a betrayal to Matt. Instead, I think, maybe, that’s what Matt would have hoped for. If he knew he couldn’t be with us, if that wasn’t an option in this lifetime, then I think he would have hoped that we did more than survive. I think he would have hoped for us to thrive.

January 30, 2018: Without The Glow Of Hope

The letter I wrote to Matt on January 30, 2018 was short, a scant six lines and ninety-seven words. And every time I read it, my heart hurts for that last year version of myself. Because I remember too well the moment that sparked this letter and I remember too well the way the sound of Matt’s breathing made it hard for me to breathe and how every moment began to feel like a grim vigil.

One year ago today, I referred to Matt in the past tense while I was sitting right next to him. As a writer and a reader and a lover of language, I felt the significance of my mistake reverberate through me for hours. Matt was still here, still with us, and I used the past tense. Could there be any greater betrayal? In my mind, the answer was a definitive no.

So I wrote to Matt and I apologized for this final betrayal, those words, which were all but the admission I’d been afraid to speak aloud: that I didn’t have hope he’d wake up, that I recognized our eleventh hour miracle wasn’t coming, that I couldn’t manage to scrape up any more hope for him.

I apologized for those words and I apologized for not finding a way to have hope, even when there was no hope to find. I apologized and told him he deserved better than hopeless.

In many ways, the next few days were the hardest of any in our twenty month battle. Without the glow of hope to look toward, there was nothing to fight back the dark truth of this terrible disease.

I didn’t write to Matt again until February 4th.

Instead, I read others people’s words. A few days earlier, I’d posted our story—Matt’s story—to the brain cancer forum. For twenty months, I’d been reading the stories posted on the brain cancer forum boards by anonymous strangers, looking for ways to distinguish our story from the saddest endings. When it became clear that our story would have that saddest ending—whether in weeks or months—I added my voice to the many already posted. What I received was an outpouring of support from strangers who read Matt’s story—all of it, from his first successful surgery to the recurrence we treated with poliovirus and the swelling we combatted with Avastin and the third tumor that disappeared under gamma knife radiation…the hydrocephalus and the shunt and the vision loss and the leptomeningeal disease and the final, desperate surgery and the devastating final MRI—and understood too well the mix of despair and disbelief and exhaustion and grief.  What I found while reading the comments from people who had walked a path like ours—not identical to ours, but close enough—was compassion. And what I hoped, while I spiraled into a place where hope was nothing but a memory, nothing but a lingering curl of smoke where an ember used to burn, was that the story I wrote would one day give hope to someone else—either because she’ll find a way to distinguish her story from ours or because she’ll know she’s not walking this path alone.


January 29, 2018: Quiet Hours

January 29, 2018 marked my first quiet morning with Matt. I’m not sure exactly what I did while I sat with him for those hours. The next five days are a blur, one day fading into the next. Sometimes I played music—our wedding song always at least once—sometimes I put on an audiobook for us, sometimes I gossiped and chatted about nonsense and filled him in on G and H, and sometimes I sat in silence listening to him breathe and measuring his breaths against my own.

Days earlier, the neuro-oncologist had suggested inpatient hospice over home hospice so I could simply be Matt’s wife again, and I hadn’t understood what she’d meant. But during these days in that quiet sunny room, I understood. For the first time, there were no tests to schedule or results to learn or doctors to badger. For the first time since June 6, 2016, I sat with Matt and I didn’t feel the stress of needing to keep running, keep moving and fighting. He was safe and he wasn’t in pain, and there was nothing for me to do but sit with Matt and let the rest of the world spin around us.

It’s a strange feeling to stop after so many months and days and hours of going. It’s a strange feeling to sit in a room and not hop up at each sound or think about the next moment or the one after that. To sit and be. Friends often texted me to ask if I wanted company during these solo hours and most of the time (some might even say all of the time), I told them I didn’t. It had been a long time since I’d been able to sit with Matt and just be. And a part of me was grateful to get these moments again—these moments to be  with Matt without expectation, without willing him to be someone he couldn’t be anymore—even as I kept waiting to wake from this nightmare. The final contradiction of brain cancer, I suppose.

At some point in the afternoon, the nurses came in to help move Matt’s position. Rather than asking me to leave the room the way they had when G and H had been with me, they allowed me to stay. Matt’s eyes fluttered open for a fraction of a heartbeat. The nurses said it was likely only a reflex response, but nevertheless, when they left, I put my hand into Matt’s and squeezed, and—maybe I imagined it, maybe you can talk yourself into believing all sorts of things when emotions are running high and sleep is running low—but I was sure I felt a squeeze back.

When it was nearly time to pick up G and H from school, I told the nurses I was leaving for about an hour and I’d be back with the kids. The words came out with more emotion than I’d expected. And the nurses somehow understood. They told me that if anything happened while I was gone, Matt would know I was only not with him because I was taking care of his kids. And it gave me a kind of peace to believe that—to hope that on some level Matt understood I was doing my best to be in two places and be two people—his wife and G’s and H’s mother—and that he’d want me to be there for G and H, as much as they needed.

That night, I helped G and H with their homework on the floor beside Matt’s bed. We talked about their days as we ate dinner cross-legged, plates on our laps, on the couches and chairs surrounding Matt. Matt remained comatose—I still don’t know whether coma is the official word, but asleep doesn’t feel significant enough—but we were together. And it was easier to breathe when the four of us were together. It was easier to just be when we were all together.