October 31, 2017: Halloween

One year ago today, I helped G into her Evie costume and H into his storm trooper costume and sent them both to school for a day of parades and Halloween class parties. After the bus arrived, I walked back into the house and texted a friend to tell her about the conversation we’d had while waiting for the bus.

H had asked whether Daddy would be going trick-or-treating with us this year. G answered before I’d formulated an answer. She’d told him that Daddy couldn’t trick-or-treat with us because he was too sick. The frankness with which she understood that truth was a reminder that they were not oblivious to all the changes around them.

But Matt and I were determined to chase normal, however elusive it might prove to be. We agreed walking the hills of our neighborhood in the bitter cold, trailing after a gang of 7- and 5-year-olds would be too physically difficult for Matt, and keeping an eye on two sugar infused children and Matt would be too emotionally difficult for me.

Instead, we decided that Matt would take a pass on the group trick-or-treating, but we (our family of four) would do a second, small round of trick-or-treating around our neighborhood afterward. (G and H thought this was a fabulous idea—more candy for them.)

In an effort to ensure that Matt wasn’t walking around too much while I wasn’t home, I set out a bowl of candy by the front door with a note—please take two. I didn’t have high hopes for the candy making it until we got back, but I thought the empty bowl and note would at least deter kids from ringing the doorbell while I wasn’t home.

A few minutes before G, H, and I were ready to head home, I received a notification from our Ring doorbell. Someone was at the door. And Matt had answered.

I came home and tried to make sense of the scene. Candy littered our front steps. The pumpkins G and H had decorated were missing. The plastic orange Jack-o-Lantern bowl was gone. The story I pieced together from Matt sounded a little like this: A group of older boys rang the door, expecting no answer. When Matt answered—in his orange Jack-o-Lantern shirt—they panicked and started throwing candy. They fled the scene, grabbing the bowl and pumpkins.

That story is mostly irrelevant to our year of Hope, except in how it resonated with G and H into Post Hope. This year, while we debated which bowl to buy at Target to replace the missing Halloween bowl, Gab reminded us all that if Daddy hadn’t been sick, he would have scared them off. If Daddy had been himself, we wouldn’t have needed a new candy bowl.

The story of today is a last—Matt’s last Halloween—and a first—our first Halloween as a family of three. I’m sure we (or at least I) will flash back to a decade of Halloweens spent together, many of them featuring that orange Jack-o-Lantern t-shirt. I’m sure G and H will pose for pictures in their costumes and it’ll hurt to know Matt won’t see them dressed up. I’m sure we’ll be hit by a grief wave at some point in the day. But I don’t know what that grief wave will look like.

Because one year ago today, I’d already lost the version of Matt that was my co-parent. One year ago today, I was already missing that person who would have walked beside me in the bitter cold while the kids ran ahead.

That’s the cruelty of brain cancer. We didn’t get a proper last Halloween. This isn’t a true first.

One year ago, after the group trick-or-treating and the bowl heist, we went out to trick-or-treat as a family of four. (Well, four plus a very loud 9-lb maltipoo.) We went up and down the street to our neighbors’ houses. We chatted with others who were also going to just a few more houses before calling it a night. We found a way to make it work. And maybe that’s the only story that matters.

October 30, 2017: Cognition Therapy

October 30, 2017 was a first—a short-lived first, but a first, nonetheless. One year ago today, Matt started cognition therapy. Like last week, we drove to the Kessler outpatient building and I sat in the waiting room with my headphones plugged in while Matt went first to cognition therapy and then to physical therapy.

Two hours later, with a crisp manila folder tucked under Matt’s arm, we were heading home. I asked Matt what he’d worked on during cognition therapy—the idea of cognition therapy was completely novel to me. But answering questions remained a struggle for Matt. He started to tell me about his session, but got side tracked by an irrelevant story and then lost his concentration completely.

The manila folder provided more answers. The folder contained evidence of what Matt had worked on and contained his homework for the week. The work ranged from a list of words that required Matt to supply either the synonym or antonym of the given word, or a story, which required Matt to put the events in the correct order. (Ex: Jim bought a soda, but before that he gave Sara a sandwich.)

I was thrilled by the prospect of homework for Matt. Before the hydrocephalus and poliovirus and Glioblastoma entered our lives, Matt had helped run a company; he’d managed employees and spearheaded campaigns and used creative thinking to solve problems. He’d held strong opinions on business and politics and finance. But after hydrocephalus and poliovirus and Glioblastoma, Matt hadn’t been able to do any of that. He spent a lot of time napping and watching television. I’d begun to worry (yes, more worry on my part) that maybe Matt was growing bored. And boredom could turn into something worse. Idle minds and all that.

I think Matt was looking forward to homework and the prospect of setting his mind to a mental task. I remember how he sat in his spot on the couch, scribbling words into the margins of the papers after dinner. I remember how G and H giggled about Daddy’s homework as they sat to work on their own homework. I remember the thread of sadness in my heart as I watched him struggle to complete the assignment—we both knew that in his previous life, these tasks would have been simple for him.

But every sprint to the finish line has to start with a first step, and this was Matt’s step back to himself.

We hoped.

As it turned out, Matt was racing to that finish line to reclaim himself on top of a train speeding down the track in the other direction.

When I look back, I see cognition therapy as a necessary manifestation of our hope. The specific exercises were designed to help Matt regain the brain function he’d lost after all that he’d been through at Columbia. But cognition therapy could only work if Matt’s mental capacity remained stable. His brain could only be re-trained if the attack against it was over.

And it wasn’t.

When I wrote in my About Me page that Matt fought gracefully over twenty months, I am referring to a million moments, including these moments, when Matt sat, night after night, and worked to retrain his brain, even as his brain continued to betray him.

October 29, 2017: Eye-Opening Book

A year ago today, we (our family of four) went to a Halloween-themed dinner with Matt’s parents. Afterward, I texted a friend and told her we’d had a nice night, but it was obvious that Matt wasn’t Matt—a son, father, husband, and business owner.

But this is a story I’ve told before. Matt wasn’t Matt and I missed him even when I was looking at him. Matt wasn’t Matt and despite my best attempt, I’m not going to be able to pinpoint the moment that he vanished. By October 29, so much of him was gone and the story passed without me spotting those lasts. So, what’s the story for today?

Truly, I don’t know.

The other day, I saw The Hate U Give, an incredible, eye-opening book turned incredible, eye-opening movie. Throughout the movie, my thoughts kept flashing back to March 2017, when Matt and I stayed for a week in North Carolina and Matt became one of the 61 people to participate in the Phase I poliovirus vaccine clinical trial. I’ve written about that week. In fact, the incongruity of living Post Hope while my thoughts constantly flashed back to that week was the reason I started this blog. But when I wrote about that week, I left out one inconsequential detail.

Seven months and two hundred(ish) posts ago, I plucked out the key moments from our week at Duke: the sushi dinner before the biopsy, the biopsy, the long wait for the pathologists to confirm the presence of GBM before the infusion could begin. I did not write how Matt and I passed the time during the 6.5 hour long infusion. We chatted. We watched television. And we read. He read The Hate U Give.

Matt was not a big reader. He would say he mostly read books while he was traveling, and if his travels happened to end before he finished the book—well, the book might remain unfinished. (As an avid reader, this idea horrifies me, but that’s irrelevant to this story.) He read mostly books by Lee Child (the Jack Reacher series), Harlan Coben, and me. (He liked to think of himself as my biggest fan and loudest editor.)

On March 30th, with 6.5 long hours stretching out before us, I handed Matt the book I’d just finished reading. I told him he absolutely had to read it. Yes, it was young adult (YA) and, no, there’d be no former military police officer investigating a kidnapping to save the day, but he had to trust me. He started the book during the infusion and kept reading even after we’d landed back in New Jersey. He’d been as moved by the book as I was.

I think (though I could be wrong) that it was the last book he read. I wish he’d gotten to see the movie.

I’m not sure what my point is. Watching the movie may have simply triggered a minor grief wave. Maybe I’m rambling because, as I admitted, I don’t have a new angle in which to tell the story of today. Maybe I just want to give the movie (and book) a plug. Maybe I’m still trying to understand loss, which is concept that may never make sense.

Eleven families in Pittsburgh are waking up this morning and also trying to understand loss. I can’t imagine their grief or the depth of their pain after a senseless tragedy. I can say only that I do believe love is stronger than hate, even on the darkest days.

October 28, 2017: Conversations

I am nearly nine months into Post Hope and there are still some words I can’t say out loud. There are words I can’t bring myself to write. I have found ways to talk around the truth of February 3rd, to describe what happened to Matt without using those words that start with “D”. But in today’s post, I can’t escape the word.

One year ago today, Matt and I didn’t go to a Halloween party hosted by good friends of ours. I knew we were unlikely to go the moment we received the invitation—large crowds were difficult for Matt; the noise and speed of many conversations at once made him feel disoriented; he grew tired too quickly—but I nevertheless waited until the last minute to RSVP.  That ever-present hope. Possibly that ever-present hope dashed with a touch of denial. When I texted the hostess of the party to tell her we wouldn’t make it, I said we were just waiting for our upswing. I promised we’d be there next year.

For reasons that remain a mystery to me, one year ago today I decided to approach a conversation Matt and I had, thus far, steadfastly and stubbornly avoided. Standing side-by-side at the bathroom sink, toothbrushes in hand (because my timing is clearly impeccable), I brought up the conversation I’d had with the Columbia doctor on October 4. What to do if Matt couldn’t make his own nuanced decisions. How hard should we keep fighting if he was incapable of making his own decisions. We’d never talked about it before. We hadn’t wanted to. I still didn’t want to. But, nevertheless, I asked. And instantly regretted it.

I remember the way Matt paused.  The way he looked at me and the words he said. “Why would we talk about that? If we’re talking about that, then it means I’m dying and that’s not happening.”

That “D” word. Hearing Matt use that “D” word felt like forgetting how to breathe.

If there was a way to take back words, I would have found it for that moment and those words. I told him I agreed and I was sorry I asked. I blamed the doctors. Guilt burned through my dreams that night. The worst thing I’d ever done was ask that question, even if it likely needed to be asked.

Over the past almost nine months, I’ve come back to this moment more times than I would like to admit. I remember wanting to have the practical conversation and being terrified the practical conversation would bring in bad energy that would jinx us. Not logical, but also not untrue. I remember Matt’s certainty that everything would be fine and the pang of worry I felt because the odds kept stacking up against us and what if Matt was already incapable of seeing that. I remember the guilt I felt for letting my thoughts anywhere near that terrible place where the message was something other than everything will be fine. Mostly, I remember Matt, his purity of hope, and that steals my breath every time.

In the first paragraph, I wrote that I don’t like to use the “D” words. Even in this post. I tried to force myself to write those words out (other than to quote Matt) and I couldn’t. Not even for the sake of clarity. But, unlike me, G and H are very comfortable with all the words that I avoid. They talk about what happened on February 3rd with direct language. They don’t avoid the truth with strangers. (Confession: I flat out lie to strangers who casually ask about my husband all the time because I can’t bring myself to speak that “D” word. It’s a weird, illogical Post Hope side effect.)

Nine months ago, I had another horrible conversation I never wanted to have. With G and H. To tell them that the doctors couldn’t help Daddy anymore. Nine months ago, G and H were forced to grow up even faster. Nine months ago, and every day since, G and H have proved that they are more resilient than almost anyone else I know.

I have one last memory of October 28th. After the horrible conversation, after the awkwardness and the incessant internal dialogue faded, I remember laughing with Matt. He’d done something strange—no doubt, tumor related—I pointed it out, and he made a self-deprecating joke about it. Then he’d simply laughed and his laughter was infectious. We both laughed until we couldn’t breathe in the best way.

It’s one of the last times, if not the last time, we laughed like that together.

It’s a memory I’m grateful to have and honored to share.

October 27, 2017: Occam’s Razor

One year ago today, we (Matt, his dad, and I) drove to Columbia and learned the results of Matt’s most recent PET scan.

I remember this appointment without the help of text messages. I remember how the nurse took Matt’s vitals after we were called into the exam room. His weight was low, his blood pressure was low, his temperature was low. I remember asking whether the numbers were okay and being reassured that they were—the numbers were low, but still within a normal range. I remember pushing away that worm of worry—the numbers weren’t Matt’s normal, but they were still normal.

My thought process looked similar to this: If there was a concerning trend in the vitals, the doctors and nurses would notice, wouldn’t they? The people smarter than me would pay attention to his temperature and blood pressure, right? Why else would they go through the motions of taking these measurements? I concluded that my overdramatic brain was the problem. Maybe it was. One year later, I don’t know whether the worrisome numbers were indicators of what was to come or not.

After a short wait, the doctor arrived and showed us the results of the PET scan. And I remember.

I remember the image she showed us. I remember the panic. I remember the confusion that followed and remained.

Matt’s spine. Matt’s thyroid. Matt’s brain. All of it glowed yellow on the PET scan result. When we asked the doctor whether that was normal, she shook her head. The fact that Matt’s brain glowed yellow wasn’t surprising—the tumor was located in his brain and she (the doctor) expected a cluster of cancer cells to glow yellow on a PET scan. But the spine and thyroid—they shouldn’t glow yellow. That was not normal.

But the doctor wasn’t ready to conclude the glowing yellow in Matt’s spine and thyroid was due to cancer. Glioblastoma doesn’t spread, doesn’t metastasize—that was the universal truth we’d been told from the beginning. And if it had spread, Matt wouldn’t look and act as good as he looked and acted. That amazing brain.  The only logical result was that something else must be causing the yellow flare on the test results.

At 1:40 p.m., while Matt was finishing blood work, I texted a friend and told her that I was very confused about what we’d learned during the appointment, but I wasn’t quite sure how to word that confusion. One year later, I’m still struggling to word that confusion, though I understand it better. It’s the confusion that stems from seeing a truth—a reality—and deciding to deny it. It’s the confusion associated with the fear of vocalizing a truth too horrible to vocalize.

The principle of Occam’s Razor suggests that the simplest solution tends to be the correct solution. In Matt’s case, we disregarded that principle in favor of reviewing hypo- and hyperthyroidism and secondary cancers. I think (though I truly, remarkably still don’t know) that on October 27th, we saw proof that Matt’s cancer had entered his spine, the bones or the space in between, and somehow, still didn’t see it. Because it was too improbable. Or too impossible. Or simply too unspeakable.

We ended the two hour long appointment with the doctor declaring that Matt was a mystery. We scheduled a thyroid biopsy for the following week to better understand the PET scan results. For the next few weeks, we’d do nothing but try to find an explanation for the PET scan results.

That night, I took G to the mother-daughter dance at her elementary school. Matt’s sister stayed with Matt and H because the days when I could leave Matt alone with his own kids had gone.

I remember taking pictures of G and her friends in their cowgirl outfits. I remember watching the girls play and dance and laugh together. I remember thinking at least G (and H) had normal in this part of their lives. I remember feeling simply grateful that some part of their lives hadn’t fallen apart.

I remember feeling hopeful—G and H had been through so much, seen so much, and they hadn’t broken. They could still play and dance and laugh. And that was something. That was everything.

October 26, 2017: Paranoid

For the last week or so, I’ve tried to capture a snapshot of our life, the changes I was seeing in Matt and how we (our family of four) were adjusting. I noted the frequent naps, that missing flash of humor and wit, and the imperfect clarity of thought. But the other struggle in these days was my own paranoia.

Between all we’d experienced, all I’d read while lurking on the brain cancer forums, and my own overactive imagination, my thoughts were constantly bombarded by worst case scenarios. Which meant when I wasn’t with Matt, I was bugging him with calls and text messages vaguely disguised to look like casual chatter.

On October 26, 2017, Matt didn’t have any appointments. No therapy, no scans, no follow ups. So Matt slept in. He slept through the kids getting ready for school and the bus’ departure. He slept and I talked myself into a Bar Method class. I told myself that Matt had been stable on his feet and capable of traveling up and down the stairs–he didn’t need my help. In fact, he wanted nothing to do with even my offer of help. He would be okay on his own in the morning for a little more than an hour.

I left him a banana and his morning medication—anti-seizure pill, probiotics, vitamins—on his nightstand and left for my class, which lasted one hour, from 8:30-9:30. At 9, I still hadn’t heard from him and I couldn’t stop the onslaught of worrisome scenarios. At 9:04, I texted him and said I was coming home.

I found Matt on the couch, showered, dressed, and perfectly safe. He’d taken the medicine I’d left him, eaten the banana, and poured himself a bowl of cereal. He couldn’t understand why I was so worried and flustered when I arrived home. He hadn’t answered my calls or responded to my text messages because he’d been having trouble using his phone, but he was fine.

And he was. Although, I’ve noted that fine is relative. What was fine on October 26, 2017, would not have been fine on April 10, 2017.

And then the cycle repeated. That afternoon, I had to run out of the house for another few errands and Matt didn’t want to come. G’s mother-daughter dance was the next day and she needed a cowgirl themed shirt, H was on the schedule to provide the soccer snack for the Saturday soccer game, and both kids had a slew of after school activities. Every minute out of the house was marked by worry. Every time, I walked in the door, my heart in my throat, Matt was fine.

Experience should have informed the worry, calmed the constant fear. But it didn’t. I could no longer believe in the principle that Matt would be fine because he’d always been fine. Matt hadn’t always been fine, and the tumor that had been the root cause of all those moments when he hadn’t been fine was still in his brain, still growing and spreading and failing to respond to the poliovirus.

Many times, well-intentioned friends asked if I thought we needed help at home. Each time, I said no. Matt didn’t want a stranger in the house. He barely wanted my help in the house. Why? Maybe because he couldn’t see how much he’d changed—and who can ever really see themselves clearly enough to see they’ve lost something inherent to themselves. Maybe because he was stubborn and determined not to be seen as helpless. Maybe because he was Matt, and he had that amazing brain that could push away the symptoms enough to function.

Why did I go along with his refusal of help? Maybe because I couldn’t stop trusting Matt more than myself. Maybe because I didn’t want to admit something to myself. Or maybe because I knew, for Matt, hope looked like independence and I couldn’t take that away.

October 25, 2017: Timelines

One year ago today, Matt woke up, showered, ate breakfast, sat on the couch, and fell asleep. That little bit of morning activity, along with his long doctor’s appointment yesterday, had worn him out.

While Matt rested before his second day of physical therapy, I Googled. By this point, I had begun to spend a lot of time lurking on the brain cancer caregiver and patient forums, looking for ways to make sense of our life, looking for people who might understand how it felt to be fighting a disease that stole not only a person’s physical health, but also the very thing that made them into who they were.

I remember sometime during these weeks a timeline started circulating on the brain cancer forums. Or maybe the timeline had always been circulating and it had just never made it onto my radar before. The timeline was posted for caregivers who wanted—or needed—to prepare for the final days, who wanted to know whether they had months, weeks, or days left with their loved one.

There was a detailed description of what to expect at 3-6 weeks, 1-2 weeks, days, and hours. I clicked on the link that brought me to the timeline only once. Increasingly tired and more likely to nap after outings appeared on the list. I pressed the red x in the corner of the screen to close the page with the timeline that could not possibly apply to us.

Matt and I hadn’t discussed timelines with any doctors since 2016. At that time—back in 2016—the doctor at Duke told us that we could plan on Matt watching his kids graduate high school. In July, when the third tumor was discovered, we didn’t ask Duke whether that timeline had changed. We didn’t ask in August, when we learned the tumors had grown, and we didn’t ask in September when a hemorrhage sent him to the hospital and forced him off Avastin. I don’t know whether I can truly believe it didn’t occur to us to ask. Looking back, I think maybe we didn’t ask because we were too afraid of the answer we might get. In hindsight, I see now that sometimes to protect hope, we (I) chose blissful ignorance over truth.

Lately, in Post Hope, my thoughts have been consumed by timelines. Specifically, I’ve been trying to wrap my head around the fact that only one hundred days separate today from February 3rd. Similar to how I couldn’t believe only one hundred days (ish) stretched between the infusion of the poliovirus and the discovery of the third tumor, I cannot believe one hundred days separate today from that final, unthinkable day. When we lived this story last year, these final one hundred days felt like lifetimes. When we lived this story last year, if someone had told me we had only one hundred days and I should pay attention to these last good ones, I would have dismissed them and their opinion from our lives. I didn’t need that kind of negativity near me or infecting Matt’s thinking.

In the next one hundred days, the season will change, H will turn 7, 2018 will end, and an infinite number of stories will be written. In the next one hundred days, our world falls apart and then keeps falling. In the next one hundred (ish) days, the story ends.

October 24, 2017: PET Scan

On October 24, 2017, Matt returned to Columbia for a full body PET scan, which I described as a full body MRI. Due to the timing—which was out of our control—Matt’s mom agreed to drive and stay with him during his appointment so that I could be home for G’s and H’s bus and after school activities. (The need to be in two places. The luck of being surrounded by the friends and family who surrounded us.)

I texted a friend and said I was grateful for the break from doctor’s offices. The night before my dreams had been overwhelmed by images of waiting rooms, phone numbers, and lab coats.

When Matt arrived at the test, the nurse handed him a container full of a liquid to drink. The liquid consisted of tracers, which, according to Google, collect in areas of the body with high levels of chemical activity and show up as bright spots on the PET scan. Clusters of cancer cells would show up as bright spots on the PET scan.

We were again investigating the lesions on Matt’s ribs and spine. We were again asking whether a secondary cancer was impacting Matt’s road to a cure. We were again not yet addressing the tumor in the left parietal lobe of Matt’s brain.

Matt struggled to finish the liquid. The taste of the liquid and an imperfect ability to focus on the task at hand undoubtedly played a role in his slow progress. After two hours of reminders and cajoling, Matt finished the liquid and went in for the PET scan. I’m sure the nurses were as frustrated by the delay and the need to constantly remind Matt to drink as Matt was to receive the reminders. I’m sure the hours in the waiting room surrounded by the comings and goings of other patients wore him out.

Matt returned home around 4:30. He went straight upstairs to nap and didn’t come down until dinner—that cruel transition when G and H started missing him, even though he was right upstairs. I texted a friend and said that he seemed pretty out of it. One year later, with my memory full of so many other events, I don’t know what I meant by pretty out of it. Pretty out of it could mean any number of things from the struggle to have a conversation to a toned down—flat—personality. Pretty out of it could refer simply to the fact that some spark was missing in his eyes, a flare of wit and humor and presence that had once been intrinsic to Matt.

What I do remember is that despite dreaming of endless phone calls to doctors’ offices, I did not call Duke or Columbia to tell them that Matt was pretty out of it. I’d spent all of September on the phone with doctors discussing Matt’s symptoms—the headaches, double vision, and back pain—but I couldn’t call for pretty out of it, even though pretty out of it was as concerning as the headaches and double vision and back pain. Pretty out of it was too vague, too impossible to quantify by a 1-10 scale. Pretty out of it was something we had to navigate alone—the cruelty of  brain cancer.

Today marks exactly nine months since the day I saw the MRI image that destroyed hope. We (Matt, Matt’s parents, his neuro-oncologist and I) will see the results of this PET scan on Friday, October 27, 2017, but, somehow, we didn’t actually see the results until January 24, 2018. Somehow, for three months, we didn’t see the stark truth.

In writing for the next three months, I suspect all I will be able to see is truth.

October 23, 2017: Outpatient Day 1

One year ago today, Matt started his first day of outpatient physical therapy. Due to the therapist’s schedule and Matt’s appointments at Columbia, he wouldn’t start the cognition/speech therapy for another week.

So often our schedule was out of our control. Follow up appointments, MRIs, and infusions were assigned to us—a single time was offered with a take it or leave it mentality attached—and we had to scramble to fit our lives around that schedule. Kessler was no different.

When we called to coordinate Matt’s outpatient therapies, the coordinators at Kessler told us that they could not guarantee a time. We could make a request, but the coordinators let us know that timing was based on need and the availability of the therapists best suited to work with Matt. That meant, he could have therapy at 8 a.m., which would make school drop off difficult, if not impossible, or 3 p.m., which would make school pick-up difficult, if not impossible.

We got lucky, which is not something I say often in this story. Matt was assigned therapy on Monday, Wednesday, and Friday from 10:30-12:30. This meant I had time to get the kids on the bus, get in a run or a trip to the grocery store, drive Matt to therapy, and be home in time for G and H and the whirlwind of activities and playdates that followed the end of the school day.

I remember Matt’s first meeting with the physical therapist. The therapist greeted Matt and told us that the day would only be an evaluation. Every few weeks, he would re-evaluate to ensure that Matt was making progress. I do believe he made progress at therapy, but by the time the next evaluation came along, Matt was in another down cycle and the evaluation didn’t show that progress.

While Matt worked with the therapist behind closed doors, I sat in the crowded waiting room and looked around at the strangers who, like me, were waiting for someone to emerge from behind closed doors. I wasn’t surprised to find that I was the youngest in the waiting room—Matt and I were always the youngest patients in the room—but I was surprised to see how many friendships had developed among the caregivers, who plopped down next to each other after delivering their loved one to the therapist and fell into a conversation like old friends.

Many of the patients were stroke victims, but their road to recovery didn’t look too different from Matt’s. The challenges the caregivers faced didn’t look too different from my own. And yet I remember feeling separated by more than years. I remember sticking headphones into my ears and immersing myself in plotting, outlining, and writing. Because I’m an introvert (and antisocial, apparently). Because I had precious few hours to escape reality and I wasn’t going to forfeit the time. And also, honestly, because I didn’t want to become a part of this world of outpatient caregivers.

I didn’t want to believe this might be our life for however long. I wanted to believe we (Matt and I) were just passing through outpatient Kessler. And Matt agreed. While the 10:30 start time worked for him at the moment—a slow morning and time to nap before G and H returned—he was already wondering how he could return to work.

When I think about October 23rd, this first day of physical therapy, I think only of how ready Matt and I were to move onto the next step. How sure we were that this was only a short phase. When I think of October 23rd, I see this persistent truth: after every down cycle, no matter how low we’d fallen during that down cycle, we somehow always found a way to believe the worst was now over, normal was within reach.

Possibly because we were naive. But mostly, I think, because we didn’t know any other way.

October 22, 2017: I’m Baaaaack

On October 22, 2017, Matt sent an email to a few of his closest college and high school. The subject line was “I’m baaaaaack.” He filled the email with jokes about being stuck home with his wife and kids (and wondered whether that was preferable to being stuck in the hospital–#lamedadjoke) and made some comments about fantasy football. When I read the email, I can hear Matt’s voice. The email feels like Matt. And if I didn’t know the effort Matt put into that email, I would believe he was truly and completely back.

I remember how he sat on the couch, his phone in his hand, as he composed emails and personal text messages to each person who had reached out to him over the last month. I remember how he wrote and deleted and re-wrote every joke and corrected every typo in an effort to make sure that no one worried about him anymore than they already had. He didn’t share the truth of those days at Columbia or the hard work he’d put in at Kessler in his email. He didn’t mention that we had no plan or next phase of attack against the very merciless tumor in his brain. Instead, he shared his hope and his positive attitude in an attempt to protect his friends and family from the worst days. That tangle of faith and love and determination I wrote about on June 15. He’d lost so much of himself over the last months, but he hadn’t lost that.

I haven’t written much about Post Hope lately. Because the story of our Year In Hope has been busy—October was a month of ups and downs, lost faith and gained hoped. But also because Post Hope has been feeling somewhat, completely, hopeless, which is not the message I want to share. The grief wave that hit over the last few days and weeks has been relentless and brutal, marked by the anger stage I thought I’d missed and also by the heartache that comes with taking a chance and failing. Over the summer I entered a writing contest and recently learned that I wasn’t chosen. Not a surprise—the odds are minuscule—but, nevertheless, the loss felt like a blow from which I might not recover, amplified as it was by a Post Hope grief wave and widowhood and the feeling that, without Matt, I didn’t have the energy to scrape my pride from the floor.  I canceled plans and forgot to return text messages and generally let my thoughts spiral into those very worst places.

But then, yesterday, in Post Hope, I ran my first half-marathon. I beat my projected time by twenty minutes (and then could barely walk the rest of the day). Throughout the race I knew that if not for widowhood, this Post Hope life that I never wanted, I wouldn’t be at that race, showing G and H that I could do this thing I had always said I would never be able to do. Hours before that, I opened the manuscript that had not made it into the contest and started a revision that feels, even this morning, like a step in the right direction.

I realized that though this grief wave had made Post Hope feel hopeless, it really never was. It was there, hidden and almost unrecognizable within the cracks of those hopeless days. The hope was there in the choice to run one more mile when it would have been easier to quit. Or to open up a new file when it would be easier to believe I simply couldn’t. Or the friends who reached out despite the canceled plans and unreturned messages.

One year ago today, Matt wrote an email and didn’t share the hardest parts. Today, I’m doing the exact opposite. And maybe that’s okay. About one hundred days (104 to be exact) remain until February 3rd. Many of those days will look hopeless, many more will feel hopeless and a few will truly be hopeless–after all, this story does not have a happy ending. The challenge will be to find the hope hidden within the cracks of those hopeless days, to remember that hope doesn’t always look like a shiny glimmer in the sky. The challenge will be not to stop believing in hope when it all feels too hopeless.