Author: devonpass

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Feller Forty Recap

by devonpassLeave a Comment on Feller Forty Recap

I don’t update this blog very often anymore, but I share weekly updates about the process of writing my memoir in my Substack newsletter. Check it out!

I just returned home from celebrating the fortieth birthday of one of my first blog friends, Ali Feller of Ali on the Run, so what better way to memorialize the occasion than with an old-school blog recap?

Two weeks ago, I was walking my dogs while listening to Ali’s podcast recap of Boston Marathon weekend when I realized her milestone birthday was coming up. “I’ll have to remember to send her a card,” I thought.

When I got home and checked my email, one of the subject lines gave me a jump-scare: “Re: Feller Forty – You’re Invited!”

I’m sorry, what? The message was a last call to RSVP for Ali’s birthday celebration, but I hadn’t gotten the first call! All of a sudden, I was sweaty, panicked. How had I missed the initial message? Was it too late for me to figure out how to get to Hopkinton, New Hampshire, the following weekend?

I found the original invitation buried in my junk folder (thanks for nothing, Gmail!) and got up to speed on all the details. I checked out flight costs, ran it by Aaron, shot Ali a text, and before I knew it, I was booked on a flight to Boston.

My friendship with Ali started in her email inbox. After I started running and blogging in 2010, I found her blog and began following along as she trained for her first marathon. When I planned a trip to New York City in 2011, I was training for my first marathon and had a long run to do while I was in town. Ali didn’t have any clue who I was at the time, but I emailed her to see if she’d be interested in running with me. She replied with a nice message saying that she’d love to, but she’d be out of town. From there, we stayed in touch and finally got the chance to run together when I visited NYC again in March 2015.

I was training for the Big Sur International Marathon and had 19 miles to run. Ali joined me for the first 13 miles, slipping and sliding along the slushy sidewalks of Manhattan and her favorite Central Park paths. As all runners can attest, there’s no better way to get to know someone quickly than while running. Something about sweating side-by-side together makes it easy to go deep.

At the time, I was 27 and Ali was 29. I had just gotten married and was going to try to get pregnant after Big Sur. She was planning her wedding. It was a pivotal time of big changes on the horizon for both of us.

Since then, there’s been a wedding and babies. A new job for me, a new podcast for her, and more marathons for both of us. An Alzheimer’s diagnosis and a cancer diagnosis. Unspeakable grief and heartache in many forms. We’ve cheered for each other and cried for each other from opposite coasts for more than a decade.

When Ali was going through cancer treatment, I let her know I’d be there in a heartbeat to help with chemo or cold capping or whatever she needed, but because everyone loves her, she had that offer from a lot of people. I didn’t get the chance to support her in person at her lowest, but now I had the chance to celebrate her as she enters a new decade, the very beginning of an era in which I’m certain she’ll be at her highest. I wouldn’t miss it for the world.

I was excited, too, to visit Boston for the first time, just a few weeks after this year’s Boston Marathon, where my friends Beth and Kerri crushed the race and reignited my desire to qualify for it someday.

I got into town on Thursday evening and dug straight into a hot, buttery lobster roll made with a perfectly soft and chewy brioche bun at Saltie Girl. On Friday morning, I did a little running tour of Back Bay and snapped photos of all the sights runners dream of: the Charles River; the giant CITGO sign that signals the end of the marathon is near; the corner of Hereford and Boylston; and the Boston Marathon finish line, which is permanently painted on Boylston Street. The weather was gray and drizzly, so I didn’t get to see the city in its full glory, but it was perfect for a contemplative solo run fueled by big dreams.

After I showered and had lunch, it was time to pick up my road-trip crew. Ali’s friend Conor Nickel, who used to plan massive events for New York Road Runners, was in charge of planning the festivities, and he asked if I could drive his boyfriend, Zach Cole, and best friend, Jess Movold, from Boston to New Hampshire. I was nervous because I didn’t know anyone attending the party besides Ali, so it was nice to be able to get to know a few of her friends on the drive instead of showing up at her house all by myself. I figured any friend of Ali’s is a friend of mine, and that proved to be the case time and time again throughout the weekend.

We rolled into downtown Concord, New Hampshire—all quaint red brick, ripped straight from a Netflix Christmas movie—to pick up coffee and food, then proceeded along winding country roads to Ali’s house.

Ali answered the door wearing glittery undereye patches, which couldn’t be more her. The vibe was relaxed as we ate and chatted with Conor, Ali’s Cousin Jackie (most certainly her legal name by now), and Cousin Jackie’s husband, Neil. Neil and I somehow went deep into hard-hitting life topics within five minutes of saying hello, and we weren’t even running! I guess that also happens when people are open and easy to talk to.

The first event of the weekend was a welcome party at the Contoocook Cider tasting room at Gould Hill Farm. As we all got ready, I answered the call to help curl Ali’s hair and gave her my signature waves with a flat iron. Ali has been open about struggling with losing a lot of her hair due to chemo, and she’s now working with a mix of her previous hair, new growth, and extensions. I was honored to be entrusted to help style it. She looked beautiful!

The welcome party was cozy and casual. Friends and family filtered in throughout the evening, and it was fun to chat with people from so many facets of Ali’s life. Girl’s got a lot of friends! I got to know her father, David; her ski-team friend, Tom; her sister-in-law, Michaela; her college friends, Dana and Teddy; and more. We munched on pretzel bites, pizza, and brownies, and the cider was flowing for the drinkers. At one point, Mary Wittenberg (former CEO of New York Road Runners and race director of the New York City Marathon) played a video of TikTok dance that looked complicated to me, but Ali picked it up right away. Once a dancer, always a dancer.

After the welcome party wound down, we headed back to Ali’s house to continue hanging out. I had a lovely chat with pro runner Keira D’Amato, who is Ali’s close friend and the American women’s record holder in the half marathon. She told me all about her book that’s coming out in September and asked me about my book! (I’ll share more about our convo in my next Substack update.)

Conor rallied a group of people to do an 8:15 Orangetheory class in Concord the next morning before a planned run, and my FOMO eventually convinced me to sign up as well. I may or may not have forced Cousin Jackie to join, too.

I was lucky enough to stay over at Ali’s house, along with several other friends, and I got to sleep in her office, where she records her podcast episodes! I’ve been on Ali’s show a few times (first as a guest, then as a guest host), and it was fun to be in the room where it all happens.

Saturday morning, I was up early to do my pre-run knee taping, foam rolling, and stretching in Ali’s basement workout room. Zach and I headed to Concord early to grab coffee and food, since I’m always immediately starving when I wake up and need a solid breakfast in my stomach before I work out.

The Orangetheory class was great! The more experienced Orangetheory folks didn’t love some parts of it, but as a first-timer, I had fun and got a decent workout. There were eight of us, and we all started on the rowers and strength, then moved to treadmills for the second half of the class. The class flew by and I got pretty sweaty. Some of us were smart and brought clean clothes to change into for the run; I was not part of that group. 🤣

After class, as we got ready to leave, I noticed Mary Wittenberg had a banana and asked her if she thought the Starbucks across the parking lot might have bananas because that sounded so good at the moment. She said she only wanted one bite of hers and insisted on giving me the rest, which was so nice of her and really hit the spot!

Next, we headed to Memorial Field for the run. There was a bit of confusion as to whether it was a race or a fun run, but the official name was “Ali Feller’s Ali on the Run Show Contoocook Meredith Palmer Memorial Celebrity Rabies Awareness Pro-AM Fun Run Race for the Cure 4.0-Mile Run,” and we ultimately decided it was a race.

Keira, who ran from Ali’s house as part of a 15-mile run and met us in the parking lot, offered Cousin Jackie a significant head start, and I jumped in on that. Jackie wasn’t feeling so great after doing squats at Orangetheory and a bunch of hiking earlier in the week, so I vowed to stick with her and run, walk, or whatever she wanted to do to get to the finish. I had no desire to race Keira or any of the other super-fast people in the group, for that matter. 🤣

It was pouring rain and in the 50s, but I was nice and warm from Orangetheory and I’m super used to this weather in Seattle. Even though we got completely soaked, we all looked so cute decked out in our pink Taylor Swift-inspired shirts and “ball sports fan” hats to celebrate Ali.

Cousin Jackie and I took off first. We were promised a 14-minute head start, but in reality, we got two minutes. It only took Keira, Conor, and Zach about three minutes to catch up, but we had fun heckling them as they smoked us. We eventually got passed by everyone and took our time with frequent walk breaks. I felt terrible that Jackie was in pain, but she gutted it out like a champ! We finished with a very respectable 9:38 average pace, so we must have been hauling while we were running. The group formed a cheer tunnel for us to run through as we finished, which was so fun and indicative of the supportive, celebratory spirit of the whole weekend.

Then Zach and I hightailed it back to Ali’s house while she and handful of friends picked up açaí bowls for everyone from Playa Bowls. I was the last to finish the race, but the first to get a warm shower, so who was the real winner??

The Nutella açaí bowl they got for me was not only the first açaí bowl I’ve ever had, but one of the greatest things I’ve ever tasted. Maybe it was due to my exhaustion after the back-to-back Orangetheory class and run; or the whiplash of going from being wet and cold to warm and cozy; or the irresistible combination of the creamy açaí base, crunchy granola, gooey Nutella, and juicy fresh fruit. In any case, I’m pissed we don’t have Playa Bowls in Seattle, and I’ll spend the rest of my life trying to find or recreate an açaí bowl as good as that one.

Once we were all fed and showered, it was time to prep Ali’s house for the party. A creative group got to work on the decorations while I snuck upstairs to dry my hair and put on makeup (I had the limited bathroom space on my mind and wanted to get it out of the way). Then I helped with food and drink prep, plus setting up plates, utensils, and such. Assembling two charcuterie boards was my crowning achievement. I’m no Martha Stewart, but I did my best!

Ali rounded everyone up to give a toast before the rest of the guests arrived. She started crying almost immediately as she expressed such heartfelt gratitude for everyone coming to celebrate with her. Between cancer treatment and a divorce, she’s been through more these last two years than any one person should have to handle.

I didn’t cry until she started talking about laundry. I’ll pull from the story she shared on Instagram, since I certainly can’t say it any better:

Divorce with a young kid is really hard. There’s no denying that. For me, it was the unexpected little moments that were sneaky, unconsolably hard.

Doing Annie’s laundry has always been one of my favorite things. Since before she was born, there’s always been something so sweet and comforting about washing and folding those tiny socks and onesies, and now the twirly dresses and flare pants.

So the first time I did laundry and none of it was Annie’s because she was at her dad’s, I broke down. Heavy sobs on the bathroom floor. I was broken. I was sad and alone and scared, and I missed her so much that I thought my heart might be physically broken.

Fast forward a bit, and I still hate the loads without the little socks. But sometimes in that sadness, you find something beautiful.

This weekend, as party prep was in full swing, I sat on the bathroom floor moving the laundry from the washer to the dryer.

A big load of laundry! Post-rainy run laundry.

It was mine.

And Cousin Jackie’s.

And Jess’s.

It was Keira’s and Devon’s and Zach’s and Conor’s and Neil’s.

It was a full load of laundry.

It went perfectly with my very full heart.

That heart had broken. And then all these people—and especially Annie—put it back together again.

All Ali wanted for her birthday was to fill her house with love, and that’s exactly what happened. The sparkly decorations and the massive spread of food and the big-name guests were great, sure, but it was a bunch of smelly running clothes soaked with rain and sweat that meant the most. It was the intimacy and togetherness, the result of sticking by each other even when things got tough and messy. It was incredibly inspiring, and my heart felt full, too—on behalf of Ali, and because of Ali.

We went around the room sharing little tributes to Ali, but guests starting arriving before I got the chance to say something, so I’ll share what I was going to say here.

Ali is one of those people who makes you feel like you’re the most special person in the world when you talk to her. She naturally shines as a person, but always makes sure to turn her spotlight on others and highlight the best in them. When she first asked me to be a guest on her podcast, I was shocked because I didn’t think anyone would care about my story as a very average runner, especially compared to the professional runners and legitimately popular bloggers she’s had on her show. But she convinced me I mattered, and empowered me to share the story of my mother’s Alzheimer’s diagnosis for the first time. It was only then that I realized I had a lot to say about it. Right after our conversation, I felt inspired to start writing about my mother’s journey, which has since snowballed into lots of writing over the years, and now the full-time pursuit of sharing my mother’s story in a memoir. Maybe I would have ended up here anyway; maybe I wouldn’t have. But Ali was unwittingly the catalyst, all because of her huge heart and genuine interest in others.

Ali has said that her friends have kept her alive over the past few years. They’ve sat with her during chemo, answered dark and scary phone calls, and helped pick her up off the floor on numerous occasions. But Ali built this incredible support network for herself by turning strangers into friends everywhere she goes—from the ski team to the cancer center, from major marathon finish lines to random corners of the internet.

You may give all the credit to your friends, Ali, but there’s a reason they’re all there for you in the first place. You did that.

It was a beautiful, inspiring thing to see Ali’s support network in person, and I know this is just a fraction of it!

I chatted with a bunch of different people during the party, but had to take a little break to breathe after every three or four conversations. I’m an extroverted introvert, so I can easily turn on the outgoing part of my personality in social situations, but can also feel drained and need to recharge every now and then. I’d sneak upstairs to my room/Ali’s office just to have a few quiet moments before returning to meet more people. I marvel at Ali and many of her friends who seem to have endless energy to chat all day!

I had especially great conversations with Ali’s dad, who promised to give me a tour of New Hampshire’s best covered bridges should I ever return, and another one of Ali’s friends (not Keira) who just got a book deal. The deal hasn’t been announced yet, so I’ll keep the person’s identity under wraps, but I’ll share some interesting tips they gave me about the publishing world in my next Substack update.

Can we talk about the incredible cake Ali’s friend Aubree made?? It was so beautiful, on theme, and delicious. Usually fancy cakes look way better than they taste, but this chocolate creation was perfectly moist and had the ideal cake-to-frosting ratio. Five stars, chef’s kiss, no notes.

I loved the happy look on Ali’s face as she contemplated her birthday wish. There are so many good things ahead for her, and she deserves them all.

The weather had been rainy my entire time in New Hampshire, but finally cleared up on Saturday evening. Zach, Greg Laraia, and I took a little break from the party to drive back to Gould Hill Farm to see the beautiful view we’d missed on Friday night, and to check out a covered bridge. Lovely!

The party went well into the night, then wound back down to the core group that was staying at the house. That chill, sweatpants hangout time was among the most fun, even though I felt like I was quieter than most, given the limited capacity of my social battery. I was just happy to be there!

After helping clean up and saying my goodbyes to everyone past midnight, I was up at 5:30 on Sunday morning to hit the road back to Boston and catch my flight home. I didn’t get a lot of sleep over the weekend, but all the fun was well worth it. I’m so glad I could play a (very small) part in making the weekend special for Ali.

I took away so many lessons from the experience:

Friendship comes in many forms. Embrace them all.

Surround yourself with people who’ll be there for you in the best and worst of times.

Tell those people you love them, early and often.

You can find joy in anything, even laundry.

Celebrate everything enthusiastically and unabashedly, especially birthdays.

And at forty, life’s just getting started.

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Experience

by devonpass1 Comment on Experience

My mother-in-law Greta used to shower us with gifts like I’d never experienced before. At Christmas, piles of presents carefully chosen, wrapped and scrawled with our names awaited us under her perfectly decorated tree. Opening gift after gift felt almost dizzying. I was used to my parents asking me what I wanted and sending them Amazon links—a light variation on simply shopping for myself. Greta never asked what we wanted but always seemed to know, and then added a few more things on top of that just because.

Now that she’s retired and we’ve all collected more things than we could use in our lifetimes, she’s shifted her gifting strategy to experiences: ballet tickets, cooking classes. They are things we can keep in a way that don’t collect dust around the house. Things we can revisit again and again in our minds, remembering the way we dressed up in velvet and high heels and shared a special holiday outing, or remembering the smell of freshly whisked chimichurri and steak sizzling on a grill. They represent togetherness, memories—things we want to hold onto forever.

Greta treated me to an incredible Argentine cooking class for my birthday this year.

I liked her strategy so much that I wanted to give my stepdad an experience gift for his 74th birthday. I came across the concert lineup at Chateau Ste. Michelle, a winery in my hometown that hosts a popular series of outdoor shows every summer, and saw Jon Batiste was coming to play the week of his birthday—perfect.

I was in awe of Jon Batiste after listening to him on Armchair Expert and watching American Symphony, a documentary that follows him composing his first symphony while he experiences professional highs (winning a Grammy for Album of the Year) and personal lows (the resurgence of his wife’s leukemia). I watched American Symphony for a second time with my stepdad and we both connected with Jon’s unflinching attitude in the face of life-threatening illness. “You have to confront the brutal reality,” he says, “but at the same time, have completely unwavering faith.”

I sprang for great seats—all part of the experience—and my stepdad was thrilled. He even called his brother in Virginia to brag about how close to the stage we were. We arrived when the venue opened and had plenty of time to eat dinner and share a bottle of crisp white wine in plastic cups. My stepdad started singing Bill Withers’ “Lovely Day,” and it was—a balmy, cloudless evening in early June.

“Mom would be so proud of us,” I said. The past five years have been filled with crushing stress and grief. My stepdad is completely devoted to my mom and continues to work a physically taxing job in order to offset the massive cost of her care. Other than working, visiting her and taking care of their house, he doesn’t go out, socialize or do anything enjoyable for himself. He was long overdue for some fun.

With an hour to go before the show was set to start, we bought another bottle of wine—and why not? We were celebrating! My stepdad kept refilling my cup as we waited and chatted with fellow concertgoers. When the start time came and went, we bought a third bottle—not a great call, but not disastrous yet. And a few songs into Jon Batiste’s set, I saw my stepdad making his way to buy a fourth bottle as I stared at him in disbelief and shook my head, “Nooooo!” It’s the last thing I remember.

Before the blackout.

Past midnight, I woke up on the living room floor of my mom and stepdad’s house with my cheek nestled in a spray of vomit. My stepdad wasn’t doing much better. I staggered over to the kitchen sink, washed as much sickness out of my hair as I could, then chugged some water and went back to sleep in an actual bed. When my phone alarm woke me up at 6am, I was still drunk.

I’m thankful we got home safely—we assume security dumped us into an Uber—but I was horribly sick and hungover for the entire next day. I repeated “I’m never drinking again” over and over, and I meant it. I felt ashamed that I missed so much of the concert I’d been looking forward to, and embarrassed that I got blackout drunk at age 37. In my early 20s, this would have been just another night out—something to laugh about with my friends—but as a full-blown adult and mother, I thought I was well beyond that level of poor judgment.

“Mom would be so ashamed of us,” I said as my stepdad drove me to my car after we sobered up.

It scared me to lose control like that. So many terrible things could have happened. I’m lucky the worst of it was feeling sick and full of regret over ruining and missing what was supposed to be a memorable night. If Alzheimer’s has taught me anything, it’s that memories are beyond precious.

I’ve had 160 alcohol-free days to process this experience, and I now give a lot of grace to two deeply hurting people who were just trying to have some fun amidst so much sadness in their lives. Wine gave us a glorious, weightless feeling; we just wanted to hold onto that as long as we could. The problem is that one bottle wasn’t enough to ease the excruciating pain of losing my mom. 100 bottles wouldn’t be enough. Rather than trying to erase the weight of this hellish journey, we need to hold each other up, help shoulder the load.

I put a lot of work into keeping myself afloat and not sinking into depression. I work out, eat (mostly) well, talk to a therapist and write, but I still feel like I’m always teetering on the edge of a cliff, vulnerable to being knocked over the edge by a single blow. Misusing alcohol felt like giving up all my hard work and throwing myself off the cliff. It was not compatible with who I want to be and how I want to live.

Since this experience, I have not once wanted to drink alcohol again. My choice to stop drinking has freed up so much mental space. I no longer have to think about whether or not I’ll drink in any given situation; how much I’ll drink; whether or not I’ll be able to drive; whether or not I’ll feel sick or hungover afterward. I thought I’d miss the social lubrication that alcohol provides, but I haven’t at all. I’ve actually enjoyed going into situations 100% as myself, summoning my own courage to be friendly and talkative and interesting around people I don’t know very well.

I don’t describe myself as “sober” since I do like to take half a cannabis gummy—to relax or to enhance a funny movie, not when I’m sad—a few times a month. I say I’m “free from alcohol” because that’s exactly what it feels like.

I have enjoyed this freedom during a girls’ trip to Las Vegas to see Adele in concert; during a 50-mile bike ride that included several stops at dive bars; at a wedding with an open bar; at dinners, birthday parties and still more concerts where alcohol is flowing all around me. I have no problem if others want to drink and am happy to be the designated driver. I have discovered a new appreciation for sparkling water, root beer, iced tea, non-alcoholic beer and some really tasty mocktails. I have never felt left out. I have never regretted not drinking.

At 37, I know myself quite well. I know what is for me and what is not for me. It feels really great to cut things out of my life that are not for me, making room for all the better things. There are so many better things.

In early September, my stepdad and I returned to Chateau Ste. Michelle to enjoy a Gregory Alan Isakov concert free from alcohol.

Someone blames me for what happened last time.

It was another lovely day. We sat near two-time Oscar-winner Hilary Swank! I remember it all, I drove us home, we weren’t sick. A fun memory firmly in the bank.

Mom would be so proud of us.

I am so proud of us.

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A New Path

by devonpass3 Comments on A New Path

Today marks five years since my mom’s Alzheimer’s diagnosis and the second time I have quit my job in pursuit of a dream.

The first time was in 2011, when I quit my proofreading job at an ad agency to travel around the world solo. My trip ended after three months when I badly sprained my ankle in Thailand. I came home, reunited with Aaron, got a job as a copywriter at a tech startup and got engaged. Things were starting to sour at that job by the time Aaron and I got married in 2014, and when we wanted to start trying for a baby in 2015, I knew I had to find a different job first—one I’d actually want to go back to after maternity leave.

My former boss—who had already escaped the sourness—actually found the Nordstrom job listing and sent it to me: “You’d be perfect for this.” I started my new job writing product descriptions for Nordstrom.com in July 2015 and was pregnant by August.

Around my daughter’s first birthday, I moved to the marketing team to write web campaigns and emails, which is what I’ve been doing ever since. My career at Nordstrom has spanned Evie’s entire life, including in utero. Until now.

I wrote in March about feeling destabilized after layoffs impacted many of my co-workers and I was moved to a different team. It happened at the same time my mom was kicked off hospice, and both sudden changes left me feeling helpless and abandoned. I tried to focus on being grateful I still had a job and dove into my new role, but it quickly became clear it was not a good creative fit for me. I starting looking at job listings and even applied for some, but mostly just wished I could go back to my old team.

In May, my old team was struggling—they’d lost me, but not my workload—and reached out to my new team for help. I talked my way into being loaned back to my old team to help out through the busiest time of year. When I was told I had to go back to the new team at the end of September, I thought about how unhappy I was doing work I didn’t enjoy and how relieved I felt when I resumed the work I do enjoy. The only thing running through my mind, over and over, was Kamala Harris’ campaign slogan: “We are not going back.” It was time for me to leave.

There were many conversations about my decision over the course of a few weeks, but my gut reaction remained the same, and I submitted my resignation in mid October. I knew in 2015 that a big change was necessary, and I knew it again now. Back then it was so I could become a mother. This time, it’s so I can become a mother again, but to a different kind of baby: a book.

In January, I started writing a book proposal and researching the process of querying literary agents. I started to believe I could actually do this big, scary thing I’d always wanted to do, but never felt confident enough to try. Then everything flipped upside down in February and I put the project on the back burner. But all year long, that book has been tugging at my brain. I’ve been shaping the narrative and writing chapters in my head. I’ve been dying for the time to finish the proposal and start making my dream a reality.

I’m tremendously lucky to have Aaron’s support in leaving my job and throwing all my energy into writing this book and getting it published. When I asked him if he was okay with the idea, it took him about half a second to say, “Of course.” I think he and my close friends are sick of hearing me talk about it and thrilled that I’ve finally got the guts to do it. Their instantaneous and unwavering support has been invaluable. The hardest part of all of this has been giving myself permission.

Just as in 2011, it was incredibly difficult to walk away from the security of my job. If I hadn’t been moved to a different team, I probably never would have left. I believe in signs from the universe and feel the move put me at a crossroads and forced me to make a choice: Follow the path of safety and regret, or forge a new path of uncertainty and personal fulfillment.

Before I submitted my resignation, I took the dogs on a long walk so I could think about everything. We took a different route than usual and happened upon a house with several painted rocks nestled in a planter next to the sidewalk. My eyes went straight to this one.

I later returned to claim this rock, and I’ll keep it next to my laptop as I write and face uncertainty and write and deal with rejection and write and hopefully get a big win eventually. I know in my bones I’ll never regret trying, and that’s enough for me.

So what’s the deal with this book? It’s a memoir about my mom, of course, and about me as well. I’m far from the first person to feel compelled to write about a dying or dead parent, but I’ve struggled to find a book that captures the unvarnished experience of early onset Alzheimer’s. And five years into this, as I continue to sort through hundreds of her photos and letters—my mom kept everything—I’m learning more about her life in the only way I still can.

She hid the most tender parts of herself even when she was well, so I only knew the tough exterior she chose to show the world. A lifelong quilter, she spent thousands of hours stitching her stories with fabric and thread—a language I don’t speak. I’ll share what I learned when dementia began to unravel the truths she sought to keep hidden. I’ll also recount my own truths I’ve never written about before. If the ravages of Alzheimer’s await me, I want my daughter to know who I really am.

It’ll be a memoir about autonomy won and lost; about self-determination, resilience and the power of the mother-daughter bond; about all the joys and sorrows that are sewn together to tell the stories of our lives—and make them worth remembering.

I have no illusions that this will be a quick, easy or even profitable journey. Luckily, I’m well trained in mental and emotional endurance. My plan is to put my head down and write, write, write through November—which, coincidentally (or not?), is National Novel Writing Month—and see how the story takes shape, then finish my book proposal and start querying literary agents in the new year. I only need a few sample chapters to send out with my memoir proposal (whereas novels require a completed manuscript), but I want to get into the habit of writing every day and honing the best material.

It would be so chic and cool to not tell you about any of this and then suddenly post about signing with an agent or scoring a book deal, but my biggest wins come from declaring I’m going to do something that feels scary and impossible, then using the adrenaline from making my goal public to power through and actually do it.

And I could really use your support and belief in me. I know a number of you have been following along with my story for more than a decade. I hope you’ll come along as I write the next chapters.

Alzheimer's disease, dementia, mom

Conversations I Wish We Had About Dementia

by devonpassLeave a Comment on Conversations I Wish We Had About Dementia

Like many millennials whose Sisyphean task is to assist their boomer parents with technology, I visited my mom in January to help facilitate a video call with a nurse practitioner. I found her pacing up and down the hallway.

“Hi, Janet!” I greeted her. “I’m your daughter Devon.”

“Oh!” she said, as if she knew she should recognize me, but did not. I asked her how she was doing. “I feel scared,” she replied.

“Why do you feel scared?” Her answer was a nonsensical jumble of words. She was able to articulate her feeling, but not the underlying reason. I venture she was scared because she didn’t know where or when she was. I’d be scared, too.

During the video call, I cringed as the nurse practitioner explained my mom would be reevaluated for hospice in the coming weeks. I tried not to say the word “hospice” in front of her, even though she’d been on it for six months. I glanced at her nervously, wondering if the word penetrated her consciousness. She stared out the window of her room, clenching the wooden slats of the blinds with both hands. When she’s nervous or upset about what’s going on around her, she tends to grip the nearest object. Her entire world has slipped away; she is desperate to hold onto something. 

I’ve spent the last six years watching my mom deteriorate, and it’s been five years since we discovered why. 

At 37, I am an early survivor of this specific hell. It’s quiet here. After her diagnosis at age 61, it took me more than a year to be able to speak the words aloud: “My mom has Alzheimer’s disease.” Even then, I could only whisper it between sobs.

Eventually I found a virtual support group for adult children of parents with early onset Alzheimer’s—the kind that strikes before the age of 65—and a handful of us whispered to each other over Zoom once a month. I began sharing my experiences on social media and more people my age came out of the woodwork to say they, too, are slowly and silently losing a parent. 

“She’s in the end stage now and it’s the worst thing I’ve ever seen,” one woman in her thirties wrote to me about her mother. “I haven’t met anyone else with a similar experience.”

Alzheimer’s was never on my radar; there is no record of it running on either side of my family. My mom was a highly capable executive assistant who spent her free time quilting and tending to her vegetable garden. She looked forward to retirement and becoming a grandmother. I’ll always remember how she danced around my living room in 2015 when I shared the news of my pregnancy. I didn’t expect to rejoice over my daughter learning how to use the toilet, dress herself and read at the same time my mom lost those abilities.

We certainly never discussed how things might play out if she were to develop dementia. It’s a conversation I didn’t think to have—and might have been afraid to have, as if saying “Alzheimer’s” aloud could conjure it into reality. Still it crept up on my mom, stealthy and vicious, and stole her from me piece by piece.

My friends—most of whom have healthy parents who host holiday dinners and babysit their kids on weekends—sympathize, but can’t relate. It’s my lonely reality right now. But like the Stark family in “Game of Thrones,” I issue an ominous warning to my fellow millennials: Dementia is coming. 

I’ve seen it with my own eyes; I’ve heard it in the whispers. And the statistics are grim. The Alzheimer’s Association estimates 6.9 million Americans age 65 and older are living with Alzheimer’s dementia in 2024. It projects this number will balloon to 12.7 million by 2050.

I worry about the onslaught of devastation that’s coming for boomers and their millennial children. Our parents are the ones who swept us back into the nest during the Great Recession, kept us on their health insurance plans until we turned 26, and opened up guest rooms and basements to us temporarily—and not so temporarily—during the pandemic. Many of us are still paying off decades-old student loans. We’re unprepared to not only lose our parents’ support, but to muster all our energy and resources to support them. 

How many boomers have long-term care insurance or the savings to fund long-term care? How many of their children realize they will be the ones to provide or pay for this care? Are there enough neurologists to diagnose millions of new Alzheimer’s cases? Enough home health-care workers to support family caregivers? Enough memory-care facilities to house patients? Enough therapists to help families survive the excruciating experience of losing a loved one over many years?

To echo my mom, I feel scared. 

I’m not equipped to fix our health care system’s current and future failures around caring for Americans living with dementia and supporting their families, but I do have some advice on a personal level for families who may face this fate. It all starts with a conversation.

My family was completely unprepared for all the challenges of Alzheimer’s disease. Nothing will ease the heartbreak of an Alzheimer’s diagnosis, but making key decisions ahead of or shortly after a diagnosis can ease some heartache down the road for loved ones. 

When my mom was diagnosed in November 2019, I thought we had plenty of time before we needed to discuss the details of her inevitable decline and confirm her wishes. But the initially slow progression of her disease accelerated into a freefall during the first year of the pandemic, and we were left scrambling for solutions from a place of panic. Once the window has closed for someone with dementia to make informed decisions about their future, loved ones are left to make their best guesses. 

A survey by the Kaiser Family Foundation found that fewer than half of adults have seriously discussed long-term care plans with a loved one—including who will help take care of them and how they will pay for health care and other support they’ll need if they become seriously ill. And nearly 7 in 10 boomers will need long-term care in their remaining years according to the U.S. Department of Health and Human Services. Families should have open conversations now about the future, whether or not there is a history of dementia in the family. 

Get real about finances. 
Discuss the resources you’ll have available to pay for care. The cost of caring for someone with a progressive neurodegenerative disease is staggering, and the truth about who pays for it can be summed up by one of fellow millennial Taylor Swift’s songs: “You’re On Your Own, Kid.” 

Medicare only pays for long-term care if you require skilled services or rehabilitative care in a nursing home for a maximum of 100 days; that hardly scratches the surface of the amount of care needed for someone with dementia who typically declines over several years. Medicaid may cover some long-term care costs, but only for those with very limited financial means. Long-term care insurance can help, but be sure to review policy details and coverage limitations. Veterans may be eligible for benefits through the Department of Veterans Affairs. My friend Lauren, who cared for her grandmother with Alzheimer’s and previously worked for the Alzheimer’s Association, advises to “check out your state’s aging department or your local Area Agency on Aging (AAA). Each state is different and some have bridge programs for people with Alzheimer’s or other diseases that can be a stipend to pay for assisted living or memory care until someone qualifies for Medicaid. In some cases there are home-care grants, and others will pay for facility-based care.”

But many families—like mine—rely on personal savings and home equity to pay for care. My mom’s husband Don was initially determined to care for her at home, but in the darkest days of the pandemic, the emotional and physical toll it took on him was clear and cruel. “We can’t save her,” I told him, “but maybe we can still save you.” We moved her into a memory care facility near Seattle, which over the past four years has drained hundreds of thousands of dollars from the retirement savings they worked so hard to build. The monthly cost has risen to more than $13,000. We are counting down the months until we’ll need to sell their home. 

It’s a stark reality many Americans face, as detailed in the New York Times series “Dying Broke,” and few people realize it until it’s too late to prepare. Try calculating the median costs of care in your area—including in-home care, adult day care and full-time care in a facility—and consult with a financial advisor to get personalized guidance based on your circumstances.

Talk through medical options. 
Alzheimer’s disease is invariably fatal, but there are medications and experimental treatments that may help manage symptoms or slow the progression. Discuss whether or not you’d want to take medications or participate in a clinical trial. 

My mom began taking two medications immediately after her diagnosis. I realized in the spring of 2023 that her quality of life had declined to the point where it no longer made sense to attempt to slow the progression of the disease and, after many discussions with family members and her doctor, we tapered her off the medications. Even though I felt this was the right decision—the one she likely would have made if she could—making it was agonizing. My mom had a standard advance health care directive, but it did not account for the nuances of dementia care. How I longed for a clear record of her wishes.

Consider filling out the dementia-specific advance directive created by Dr. Barak Gaster, an internist at the University of Washington Medical Center. Discuss it with loved ones, and share copies of it with them and with health care providers. The Conversation Project also provides a guide to determining what matters most to someone living with dementia so they can have a say in their health care.

I agonized for months over whether my mom needed to endure her decline at all. Would she have wanted to end her own life instead? Should I have helped her explore options while she was still capable of carrying out a plan? The answer, it turned out, was no. Once I felt brave enough to broach the topic, Don assured me her Catholic upbringing made the idea impossible. Having no religious roots myself—and having witnessed her suffering up close—I can’t say I’d have the same answer if I find myself in her shoes someday.

It’s worth discussing where you stand on the idea and considering the options, which do not include medical aid in dying in the U.S. Even in the states where it’s legal, people with dementia are excluded from utilizing it due to two of the requirements: once they have less than six months to live, they are no longer able to make and communicate an informed decision to health care providers.

However, it filled me with great peace to read Amy Bloom’s beautiful memoir “In Love,” which chronicles her husband’s decision following an Alzheimer’s diagnosis to end his life with the help of Dignitas, a Swiss nonprofit organization. I also learned about voluntarily stopping eating and drinking, and read with great interest “The Last Day of Her Life,” a New York Times Magazine feature about how Cornell psychology professor Sandy Bem orchestrated an early exit on her own terms.

Complete and share important paperwork.
In addition to having a standard will and estate plan in place, it’s crucial to record all financial and health care wishes in the following legal and medical documents. Consider working with an attorney who specializes in estate planning or elder law to cover all your bases.

Discuss the details of these documents with the people who will be responsible for carrying out your wishes, and share copies with them and with health care providers. Don’t skip the sharing part; no one can follow your directions if they don’t know they exist.

Durable financial power of attorney: Designate an agent (and at least one backup) to make decisions regarding your money, property and belongings if you lose the capacity to do so. Following a dementia diagnosis or other mentally incapacitating health event, the agent should contact every entity involved with your finances—including Social Security, Medicare, the IRS, insurance companies, banks and utilities—to complete any paperwork required for them to recognize the agent as the sole executor of your accounts. For example, the Treasury Department doesn’t recognize power of attorney for handling federal payments like Social Security; one must separately apply to serve as a person’s representative payee.

Don described the entire process of taking control of my mom’s finances as a total nightmare. He was met with red tape at every turn, and had to physically bring my mom to several offices along with documentation from her neurologists regarding her diagnosis and mental incapacity. It was incredibly stressful for both of them. “If she had been any more incapacitated”—at the time, she was still able to hold a normal conversation and sign documents—“I don’t know how I would have possibly done it,” he said.

Advance health care directive or living will: Specify what actions should be taken for your health if you lose the capacity to make decisions. Make clear your wishes regarding artificial life support and more.

Durable health care power of attorney: Designate an agent (and at least one backup) to make health care decisions for you if you lose the capacity to do so. Discuss your wishes with these agents and make sure they are comfortable carrying them out.

Do not resuscitate (DNR) order: This medical document instructs health care providers not to perform CPR or other life-support procedures if your heart or breathing stops. Discuss your wishes with your physician, who will fill out the form.

Portable medical orders (POLST): This medical document is more specific than a DNR or advance health care directive and is for people who already have a severe illness, like dementia. The form and its exact name vary by state, but it communicates your wishes as medical orders, including whether or not you want CPR, to be transported to a hospital and to receive medically assisted nutrition. Discuss your wishes with your physician, who will fill out the form.

Millennials: Plan for your future now.
The longer we live, the more our risk of dementia increases. The time is now for millennials to prepare for our own potential long-term care needs.

If you’ve held off on contributing to a 401(k), IRA or other retirement savings plan: start today. If you already contribute and are able to increase the amount: start today. If you’ve never even heard of long-term care insurance or looked into applying for it: start today.

I felt hopeful in 2019 when Washington state established the WA Cares Fund, a first-in-the-nation mandatory long-term care insurance program, but almost laughed when I saw the maximum benefit is $36,500 (adjusted up to inflation). It’s a drop in the bucket for someone with dementia. But still, it’s better than nothing, and far more than what many Americans have planned for their long-term care.

If you have any assets, a spouse or children, it’s essential to have a will and estate plan in place, and to create a record of your financial and health care wishes before you’re no longer able to do so. You can always change them later. 

Let’s break the silence.
Alzheimer’s is the most-feared disease of older Americans, and the only one of the top 10 causes of death in the U.S. with no known cure. The stigma around Alzheimer’s causes people to live with it in silence and shame, and their families to grieve in silence and shame as well. Some call it a family disease because of the devastating impact it has on loved ones’ mental and physical health.

I’m done whispering. Now I’m yelling: Dementia is coming, but we don’t have to suffer through it alone.

I’m encouraged by my generation’s propensity to share our struggles, thanks to social media, and to embrace therapy and support groups. I believe many of us will cope with losing our parents by shedding light on our darkest experiences. It makes a world of difference to connect with others enduring the same heartbreak. The Alzheimer’s Association has a 24/7 helpline (800.272.3900) and offers support groups and a free online community for people living with dementia and their loved ones.

The greatest tragedies are made even worse by our failure to learn from them. And the lessons we learn are made even more valuable when we share them.

I still can’t save my mom, nor the millions of boomers who will be diagnosed with Alzheimer’s in the coming decades. Maybe I can, in some small way, help save the people who love them.

Alzheimer's disease, dementia, mom

Missing

by devonpass3 Comments on Missing

“Not a day goes by that I don’t miss my mother.”

This comes from a core memory I have of my mom and I lying in bed sometime during my elementary school years, chatting before she tucked me in for the night. I don’t remember the context of the conversation that came before or after, but I clearly recall the quiver in her voice, the heartbreak behind each word as she said it. It was perhaps the first time I realized my mom wasn’t invincible. 

My mom’s mother, Mary Behrens, had diabetes and died from a stroke in 1992 at age 69, when my mom was 33 and I was 4. I have no memories of her or of my paternal grandmother, a lifelong smoker who died of lung cancer in 1991, also at 69.

Even if my grandmothers had lived long and healthy lives, I wouldn’t have grown up knowing them well. My parents moved us away from our extended family in Southern California to the Pacific Northwest in 1989. The story goes that they fell in love with Seattle’s gorgeous greenery, temperate climate, and more affordable real estate on a summer road trip to the 1986 World’s Fair in Vancouver, British Columbia. They even walked through a few open houses on Capitol Hill. Since I was born the following spring, I have strong reason to believe I was conceived on that trip, perhaps in the camper they borrowed from my mom’s father. Romance!

I’m grateful my parents moved us to Washington. I loved growing up here, with our mountains and lakes and distinct seasons. The sound of rain instantly makes me feel at home. But I’m sad I never knew my grandmothers and only saw my grandfathers, uncles, aunts, and cousins every few years. I have stacks of letters from my grandfathers and knew them well enough from our visits, but we never had the kind of relationship that can only be cultivated by living in close proximity.

It must have been difficult for my parents to leave their families in California to raise their own a thousand miles away. It must have been even more difficult when both their mothers fell ill and died just a few years after we left. Suddenly, the distance between them could no longer be bridged by a phone call or flight; the missing could not be alleviated.

I was thrilled for Evie to be able to grow up with all her grandparents nearby. My mom especially couldn’t wait to be “Nana.” She talked about putting a crib in her sewing room so she could babysit all the time, but that never happened due to her decline from early onset Alzheimer’s. She and Don only ever watched baby Evie once for a few hours while we attended a friend’s wedding in my hometown.

I now sit on the floor of that room from time to time, slowly sorting through my mom’s belongings and packing up boxes to take to Goodwill. Sometimes I think about the different memories that could have been made there, and that’s what makes me saddest about all this: mourning the relationship Evie is missing out on with her nana. Nana is still here, but not in the way my mom and I had both hoped.

They do spend time together, and my mom always has a smile on her face when Evie is around. Evie has learned a great deal about patience and compassion, as she’s played the role of assistant caregiver and even comforter to me at times. She’s had to grow up a lot faster than many kids in that regard, and learned much earlier than I did that her mom isn’t invincible.

Evie is incredibly close with Aaron’s mom, Greta, who goes above and beyond to nurture their special relationship. “GG” takes Evie on adventures to Skagit Valley to see the tulips and Bainbridge Island to hunt for beach treasures, plus invites her to sleep over on weekends in her own room outfitted with cute bedsheets and plenty of stuffies.

I’m eternally grateful for Greta. She is the grandma I wish I could have had. She is the mother-in-law I’m so lucky to have. Thanks to her, I don’t think Evie feels like she’s missing out. Only I feel a hole in my heart for what might have been.

One summer Saturday, I arrive at Don’s house for a visit and ask how my mom has been that day.

“When I picked her up, she was crying about her mom,” he tells me. I haven’t seen her cry since we adjusted her meds, so this really strikes me. Considering all the things my mom has lost—memories, motor skills—it feels particularly cruel it’s the feeling of missing that remains. It has endured for half her life: 33 years with her mom, 33 years without. But perhaps this is proof love lives outside the brain.

My mom at 20, celebrating her mother’s 57th birthday on April 11, 1979.

Much earlier in my mom’s illness, I looked through her will and found it was nearly complete, save for a blank worksheet meant to detail what she wanted done with her remains. I was nervous to upset her, but needed to ask before she could no longer understand or respond to the questions: What kind of funeral do you want? Where should we put your ashes?

Her answers are scrawled in the Notes app on my phone: “Mass at Saint Teresa of Calcutta Catholic Church. Ashes in cemetery with her parents.”

At the time, I was sad to learn she wanted her ashes laid to rest in California. I wished she wanted at least some of them closer to home so I could visit more often and feel her around me. But upon further thought, I realized home is somewhere else for her, and I don’t believe one’s earthly form means much at all once the spirit departs. If reuniting my mom’s remains with those of her parents helps at all to cure her missing, I’m happy to do it.

Another Saturday in July, it’s too warm to take our usual midday trip to Cottage Lake Park so my mom can visit the ducks and watch kids play on the playground. I tell Don I’ll take her for a little spin around the block once we arrive back at the memory care facility instead.

It’s late afternoon then and the sun is filtering gently through the trees, a cool breeze tempering the day’s brutal heat. On a whim, I push my mom’s wheelchair over to a little garden next to the parking lot and sit beside her on a bench. Now feels like as good a time as any to say the things I’ve been meaning to say to her while she can still potentially understand them.

I take her hand and tell her she’s been such a good mom and taught me so much about how to be a strong woman.

She continues staring into the distance.

I tell her I hate what’s happening to her and wish so badly I could change it all.

She remains stone-faced.

I tell her we’re all going to be okay—Don, Brandon, Evie, Aaron, and me—but we’ll always miss her so much. Just like how she misses her mother, I add.

At this, she stirs and reacts for the first time. “I think she might be gone,” she says.

I don’t want to upset my mom, but I feel too cracked open to lie to her. Instead, I squeeze her hand in what I hope is a comforting gesture.

“Yeah,” I say quietly. “I think she might be gone. But I’m here with you.”

She does not respond. We sit in silence for a few minutes, still holding hands, me trying and failing to hold back tears. Then I wheel her into the building for dinner.

It’s hard to explain the chasm that exists between us even when—especially when—I’m with my mom. We are on different planes of time and space. I may not even exist in her current reality, whereas I could not exist without her in mine.

But we have some things in common now. We both feel a little lost and scared. We both have the primal urge to go to our mothers for comfort. And both of them are inaccessible to us, just out of reach on the next plane.

I can always go to the well of love she so generously filled up for me. Still, not a day goes by that I don’t miss my mother.

Alzheimer's disease, dementia, mom

Destabilized

by devonpass4 Comments on Destabilized

In January, I spent a whole session telling my therapist how well I was doing: I had a fulfilling daily routine, felt energized by my writing projects and was excited to continue riding the positive momentum. I thought I had it all figured out, but hubris always comes with a price.

On February 1, several of my coworkers were abruptly let go and I was moved to another team to pick up the work of a few writers who departed. I have mostly the same job, but under a new boss, in a new-to-me organization with completely different playbooks and processes.

I felt a mix of whiplash, survivor’s guilt and indignance over not having a say in the situation. All the while, the voice in my head chided: Be grateful. Other people have it worse. You don’t deserve to feel anything negative about this.

I’ve spent the past several weeks finding my footing and am still working on it. The sting of sudden change has calmed; the chaos of being thrown into an unfamiliar role has subsided. Everything is going to be okay.

And then.

Last week, my mom’s hospice social worker called to tell me she had gained weight since her last recertification and was going to be discharged. My mom initially qualified for hospice last July due to malnutrition. Even though she started eating well after that, she was recertified for hospice multiple times because her weight stayed the same. Now that she’s gained a few pounds, she no longer qualifies.

Enrolling my mom in hospice was upsetting, but I was blown away by how effective and communicative our hospice team was and grew to appreciate them as an invaluable asset while we navigate this final stage of my mom’s illness. When I suspected my mom had an eye infection, hospice sent someone ASAP to examine her and prescribe antibiotic eye drops. When my mom was having trouble with her feet, hospice sent me a list of traveling foot nurses who could come see her. When I requested a wheelchair because the one her facility put her in was broken, hospice had a new one delivered the next day. A nursing assistant visited once a week to give my mom an extra shower, and she’d take the time to dress her in nice clothes and accessories and send us photos. Our hospice team made my mom a priority and improved her quality of life. To lose them now feels like a gut punch.

It seems wrong to say that my mom “graduating” from hospice is a bad thing. Who wouldn’t want their parent to take a step back from the precipice of certain death? But she’s more or less in the same place, just with less support.

My mom is not getting better in any meaningful way. She is significantly worse now than she was last summer in that she now spends 98% of her time in a wheelchair due to her frequent falls. That doesn’t matter to Medicare, which pays for hospice, and she seems a way out from requalifying, whether it’s for malnutrition or dementia. But she inevitably will, and I’ll travel with her to the edge again.

The voice in my head continues: Be grateful. Other people have it worse. You don’t deserve to feel anything negative about this.

I’ve struggled to find a way to describe the way I’m feeling about these things that are kind of bad, but not that bad, and also not necessarily good. It’s not an emotion that rings clear like sad or angry or helpless, although it often comprises one or more of those.

Finally I heard on a podcast the word that sums up my world lately: destabilized.

I’ve written before about feeling like I’m on Rollercoaster Road with all its twists and turns. Now I feel like I’m traveling it on a unicycle, desperately trying to keep my equilibrium. It’s been windy lately. I’m still moving forward, but struggling to find stability.

My therapist is also on leave right now, so I’m having to spot my own mental gymnastics through this.

Here’s what they would probably say to me: You are allowed to feel sad, angry, helpless and destabilized. You don’t have to be grateful; no one is keeping score. You are feeling arbitrarily shuffled around and abandoned and those are hard things no matter the circumstances. It takes time to find your equilibrium after major changes and you don’t have to rush it. Feel your feelings, and take good care of yourself.

Sunday was my mom’s last day in hospice care. We visited at her old home and she suffered a fall that included hitting her head on a wall, leaving a serious dent—in the wall, not her head. She seemed to be totally fine, but Don and I were terrified. I almost grabbed my phone to call 911, but remembered I would call hospice instead, since my mom has medical orders to only receive comfort care—not life-sustaining treatment—in the event of a serious injury.

If something terrible happened now, who would I call? My mom is in a liminal space: not sick enough for hospice, not well enough to be saved. A lost soul caught in the in-between. It feels like Don and I are floating, untethered, in that space with her. We have only each other to hold onto.

My EMT friend sent a kind message explaining I can absolutely call 911. First responders can administer first aid, then help navigate where to go from there. If my mom sustains a serious injury, it would likely trigger hospice eligibility and they would take over—a small comfort in an awful situation.

It amazes me how much it helps to name my feelings. It helps to write about them and release them, to the extent that I can. It even helps to be my own fake therapist, though I can’t wait for mine to come back.

The sting of sudden change will calm; the chaos of being thrown back into an all-too-familiar role will subside. Everything is going to be okay.

I think.

Eventually.

Uncategorized

New-Year Goals & The Case for Damp January

by devonpass1 Comment on New-Year Goals & The Case for Damp January

On New Year’s Eve, I deleted Instagram, Facebook, TikTok and Reddit from my phone and resolved to take January off from social media.

I found myself spending hours a day on these apps, endlessly scrolling in search of… what? Staying so up-to-date on other people’s lives and constant commentary left me feeling empty. I resented the nagging drive to share content on Instagram Stories, and the guilt I felt if I didn’t post about something — a friend’s party, my daughter’s dance recital — in a timely manner, or at all. I wanted to shut down my virtual world and live entirely in the real world for a month.

The first few days, I compulsively picked up my phone whenever I wanted to procrastinate from working, and it took me a second to realize I didn’t have any of my go-to apps to open. Instead, I checked the weather a lot. At any given moment, I could tell you the exact temperature and when it was going to rain next. I allowed myself to scan the headlines of People.com to get my celebrity news fix, and to Google Taylor Swift to see what she was up to. I also gave myself unlimited access to the New York Times app so I could read news stories and, you know, learn stuff. I don’t get sucked into those resources or lose hours to them over the course of a day like I do with social media.

Soon I reached for my phone less and less often. Instead of opening it, I’d just click the side button to see if I had any texts or missed calls. If not? Back to work, or whatever else I was doing.

My 9-to-5 window became way more productive. I got ahead on my work and had plenty of time to exercise most days at lunchtime. In my off time, because I wasn’t concerned with what everyone else was doing, I had the mental space and clarity to think about what I want to do.

I’m super inspired by the musician Jon Batiste and highly recommend listening to his interview on “Armchair Expert” and watching his documentary “American Symphony.” This quote from the podcast stood out to me:

“If you stop seeing yourself, you stop being yourself, and then you can’t create the thing that’s the most resonant that only you can create.”

Jon Batiste on “Armchair Expert”

I feel more like myself than I have in a long time, and I’m excited to have the time and motivation to create. My goal in 2024 is to write and submit at least one essay or article each month for publication somewhere: a newspaper, magazine or website other than mine.

I wrote two pieces in January and have good ideas for a third and fourth. I submitted one piece and got my first rejection, which just put me one “no” closer to a “yes.” I reworked the piece and submitted it elsewhere.

I’m really excited about the second piece, but need to hold onto it until the time is right. If I can’t find a home for it, I’ll eventually publish it here. That’s the great thing about this goal: The only thing I stand to lose is a bit of ego, and nothing I write will go to waste. I already make a living writing, so I don’t need the validation of getting published to know that I’m a good writer. It would just be icing on the cake; a bit of life extra credit.

Even though I don’t have an objective win yet — that is, a published piece — I’m riding a high from accomplishing what I wanted to do in January, and I’m driven to keep going.

I’m not eager to reinstall any apps to my phone. When I do, it’ll just be Instagram, and I’ll turn off push notifications. I want to use it mindfully, not whenever the app tries to suck me in. And I’ll probably mute or unfollow a bunch of accounts. There’s just a handful of people I found myself wondering about in January, and I only want to spend time keeping up with those I’m truly invested in.

***

I also set out to do Dry January — no alcohol for the entire month. I always enjoy a reset after the boozy holiday season. This time I made it to January 15 — Martin Luther King Jr. Day — when Evie and I went with another family to the Pacific Science Center, then found ourselves at the top of the Space Needle taking in a gorgeous 360-degree view of Seattle. The other mom — my friend Kyra — was going to get a drink from the bar, and I thought it sounded pretty fantastic to watch the sun start to set with a bit of sauvignon blanc in hand. We toasted to being Dry January dropouts. (At least the wine was dry!)

I enjoyed it without guilt. Because I’ve done Dry January many times before, I don’t need the validation — again! — to know I can do it. Now the goal is more about drinking mindfully and not falling into a pattern of drinking more than I really want to just because alcohol is around. I enjoyed three more drinks in January, each time while I was out doing something fun with people I love.

When it comes to what I put into my body, moderation and intention feel good and healthy; rigid restriction does not. I want to be in control of my life, but also to enjoy it. I know all too well that it can be much too short.

If you’re a Dry January devotee, good on you — especially if it’s the first step on a path to sobriety. But if you enjoy drinking in moderation, consider Damp January (or February, or whenever). Shift the focus to intention, and don’t worry about failing at an all-or-nothing goal.

I’m lucky and grateful to be able to have one drink, enjoy it, then stop. (This was not the case in college, but luckily I grew out of that.) I find Instagram to be far more addictive. Is it a thing to be social-media sober? I’m not willing to entirely give up on sharing photos and keeping up with online friends, so I’ll work to find a balance.

***

I’m sure some people thought my unexplained absence from Instagram meant something happened with my mom, but she’s still with us and nothing much has changed. She has been re-certified for hospice a second time and seems just a little worse every time I see her. I’m moving forward with life and even have a few trips planned this year; I’ve given up on planning for the unknowable.

Less drinking. WAY less scrolling. Much more writing. That’s my 2024 so far.

mom

A Julia Child Christmas

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The holidays are a tricky time for many people, for so many reasons. I learned from last year’s heartbreak to go into this year’s celebrations with zero expectations. The result: a happy Christmas with my mom, who smiled all evening.

Last year, I gave her a fleece blanket printed with family photos, and she had no reaction at all when I helped her open it. This year, I put my energy into making something she could still enjoy: Julia Child’s bœuf bourguignon, a dish we made together for Christmas dinner in 2010. It’s a labor-intensive endeavor with incredible results.

At 23, I needed my mom’s guidance to make it. It felt good to work my way through the steps we once followed together and realize, at 36, I am more than capable of doing it on my own. Her gift to me then, my gift to her now: a dish filled with love and endless patience, made richer over time.

The night ended in tears all around because we knew this might have been her last Christmas. I hope it was. I would have been ashamed to say that once, but I say it with my full chest now. Nothing good awaits. I would love for my memories of her enjoying this Christmas to be the ones that endure.

I go through periods where I’m unable to read about others’ experiences with dementia because I don’t have the capacity to absorb anyone else’s pain. Other times, like now, I feel nourished by seeing my darkest feelings reflected on the page. “Dementia sucks you in with a terrible centrifugal force,” Suzanne Finnamore writes in her new book My Disappearing Mother. “It puts you in the position of wishing your own mother dead.” On top of the emotional agony of watching a parent wither away over many years, the shame around having feelings like this is unbearable. I vow to leave it behind in 2023.

I love my mom and I wish for her suffering to end. I am a good daughter and I will be relieved when she dies. 

Dementia is an endurance sport, and right now feels like mile 20 of a marathon. The toughest bits stretch far ahead; the finish line keeps moving, and a different pain awaits there. I will do whatever it takes to continue on, side by side with my mom. 

At 23, I needed her guidance. At 36, I am more than capable. My gift to her now: a journey filled with love and endless patience.

mom

Past Lives

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Four years of grieving what was and accepting what is.

When I’m with Janet, I wonder where my mom is. She might wonder the same about her daughter. 

When I dropped her off on Saturday after a visit at her former home, I hugged her and told her I loved her. She politely replied, “Thank you for having me over today,” like she would to a neighbor she doesn’t know very well who randomly invited her in for tea. 

I hope her daughter still exists in her mind as someone younger and more carefree, with fewer grey hairs and fewer hurts. I wish I still existed that way, too, but I accept what is.

If she doesn’t recognize me as her daughter and I don’t recognize her as my mom, we are virtually strangers. We are linked through blood and birth, but as if in a past life.

Aaron and I watched the film Past Lives on Saturday night (potential spoilers ahead). In it, Korean childhood sweethearts Nora and Hae Sung are separated by a move and reconnect intermittently throughout their lives. They know each other so well from their younger years, yet are strangers as adults. They seem destined to be together, but as they grew up, their paths diverged in such a way that makes it nearly impossible.

The concept of in-yun is woven throughout the film. Nora explains: “It’s an in-yun if two strangers even walk past each other in the street and their clothes accidentally brush, because it means there must have been something between them in their past lives. If two people get married, they say it’s because there have been 8,000 layers of in-yun over 8,000 lifetimes.”

At one point, Hae Sung wonders if they are currently experiencing a past life, and what will their relationship be in the next?

The film is gorgeous and heartbreaking; the perfect example of holding many opposing truths at once, and of grieving what was and accepting what is.

I don’t know if in-yun applies to mothers and daughters, but I do know my mom and I have left our marks on each other. I hope it’s enough. 

It comforts me to think that, while her body remains here on Earth, my mom’s spirit—the very essence of her that I’ve watched gradually fade away over the past four years—may already be somewhere between this life and the next, waiting to know me again.

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2023 New York City Marathon Recap: Part 2

by devonpass1 Comment on 2023 New York City Marathon Recap: Part 2

Start with Part 1.

When I launched my Alzheimer’s Association fundraising in April, I declared my intention to run a PR in New York City. “I ain’t flying across the country for a fun run!” I wrote.

Well, life happened, and I indeed flew across the country for the most fun run I’ve ever done—and I wouldn’t have had it any other way.

I jumped into training at the beginning of July with speed work, strength, the whole nine yards. I was determined to make this my best training cycle ever. But a few weeks in, I went for an easy five-mile run with my friend Hallie and noticed my right knee wasn’t tracking properly. I stopped to stretch, thinking it was due to a tight muscle. I was able to complete the run without pain, but my knee still felt off.

This strange feeling continued for several runs until July 26. Five and a half miles into a six-mile run, I felt sharp knee pain and immediately stopped to walk the rest of the way home. My knee felt fine just walking; it was the impact that made it hurt. The next morning, my knee started clicking and popping frequently—but painlessly—with normal movements when it never did before.

I visited my chiropractor hoping he’d be able to fix me, but he recommended I see an orthopedic surgeon to make sure it wasn’t anything serious. On July 31, an orthopedic surgeon diagnosed me with patellofemoral pain syndrome, or runner’s knee—a common injury caused by overuse and/or weak thigh and hip muscles, among other things. He wrote a referral for physical therapy and advised me not to run for six weeks.

At the same time, we were enrolling my mom in hospice care and thinking she was going to die within weeks. Take running away from a runner on a good day and it’ll mess with their head. Take it away when they’re in crisis and it’ll fuck ’em right up.

I started physical therapy on August 3 and told Julya, my PT angel: “I’m good at following directions; I’ll do whatever you say. Please, just get me to the New York City Marathon start line, and I’ll figure out how to get myself to the finish line.”

Julya and my other PT angel Stephanie worked with me twice a week, teaching me a full routine of foam rolling and strengthening exercises. They taped my knee with KT tape and showed me how to do it myself at home. Luckily, I was able to ride my Peloton without pain, so I started doing Power Zone rides with Matt Wilpers to try to keep up my cardio fitness.

Only a week into PT, Stephanie watched me run on a treadmill for a few minutes and, when that didn’t hurt, encouraged me to try a run the next day. I was thrilled that she believed in running through recovery as long as there was no pain. I was able to complete the run—but then picked up a cold from Evie and got super sick. One step forward, two steps back.

When I was finally healthy again, I felt really out of shape and struggled through a few Peloton classes and one or two runs per week. I worked my way up to a 10-mile run at the end of August, which felt like a huge victory—but far from where I needed to be to train for a marathon.

All I really cared about were getting in quality Sunday long runs along with a few shorter weekday runs, and I managed to do 12 miles, then 15 miles. My knee was still clicking and popping like crazy but was pain-free. However, my other leg developed painful posterior tibial tendonitis from ramping up mileage too quickly and compensating for my weaker leg, so my PT team showed me exercises and massage techniques to keep that at bay.

On September 17, I ran 17 miles and finally booked our flights to NYC. I knew that day that I could run the marathon—not a PR by any means, but I could get from the start to the finish. And over the following six weeks, I successfully completed what felt to me like the bare minimum of training: four days of running with one hilly run per week, zero speed workouts, topping out at 40 miles during peak week.

My knee actually didn’t bother me at all, but the tendonitis was a daily battle. I continued going to PT once a week through September just for that. Run, massage, stretch. Rest as much as possible. Just hang in there, please.

This race didn’t need to be pretty. I just needed to do it for me and prove that grief could not stop me. Runner’s knee could not stop me. Tendonitis could not stop me.

After an emotional year filled with uncertainty and the weight of making such hard decisions about my mom, I needed running, this thing I love so much, to be my anchor and beacon of hope. I needed a day of pure happiness and sunshine and smiles.

Somehow, I got it.

BOOM went the start cannon, and it was time to RUN!

I smiled like a fool all the way across the Verrazzano-Narrows Bridge, as one should when they’re running the greatest marathon in the world.

I smiled in disbelief, gratitude and pride. I admired the view of the Manhattan skyline to my left, stared in awe at the suspension cables ahead and soaked up the energy of exuberant runners all around me. This was what I’d fought so hard for. Nothing could ruin this run!

Well… it was a little warm.

The sunshine that had felt so nice in the charity village felt a bit hotter now that I was running up a decent incline in the first mile of the race. I felt very grateful for the handheld bottle I’d purchased at the last minute after hearing Jess Movold, Meghann Featherstun and Meaghan Murray-Neuberger talk on their pre-race Instagram Live about how they all planned to at least start the race with a handheld. I took sips of Nuun and thought of Emilia Benton emphasizing the importance of electrolytes the previous morning during our shakeout run. I had three more Nuun tablets in a baggie tucked into the narrow pocket of the handheld and figured it would be a good idea to use one per hour.

It felt lovely to run downhill in the second mile on the bridge, and I made sure to keep my pace feeling easy; I didn’t want to destroy my legs when I knew there were many more hills to come.

I was pleasantly surprised that I had plenty of room to run. I worried that a race of more than 50,000 runners would feel claustrophobic, but having each wave separated into three colors—orange on the left side of the bridge, blue on the right side and pink on the bottom deck—helped keep us from running on top of each other.

I had also been worried about starting with faster runners since I registered with 3:45 as my estimated finish time, but I was able to go my own pace and not get swept up. Plenty of people ran slower than me and plenty of people fully stopped to hop up onto the median of the bridge and take pictures.

It was thrilling to make our first borough transition into Brooklyn. I knew I’d see Aaron there somewhere, since he’d rented a Citibike and ridden to Brooklyn first thing in the morning.

The spectators in Brooklyn were a welcome sight, and I busied myself searching their faces for my husband. I saw him around mile three, between miles four and five, and between miles seven and eight. It was so exciting to see him each time!

But the crowds were entertaining in their own right, cheering, blasting music, holding up signs and calling out to everyone who had their name written on their shirt. This was my first marathon with DEVON printed on my singlet and I felt like a rock star. I had 1989 (Taylor’s Version) queued up on Spotify so that I could easily start listening to music whenever I wanted, but I didn’t need to for a good long while.

In different parts of Brooklyn, I heard music that reminded me of my mom and made me feel like she was with me. A man sang “Take Me Home, Country Roads” into a microphone, which my mom used to sing to me and now I sing to Evie at night. And a bagpiper took me back to my childhood days of Scottish Highland dancing—a passion of my mom’s that I promptly quit the moment she let me. I got choked up both times, and many more random times throughout the race, just feeling very lucky and supported.

I stayed on top of my fueling and hydration, eating a UCAN Edge every four miles (about every 40 minutes, based on my pace) and grabbing water at every station to refill my bottle and drink an extra cup. I dropped another Nuun tablet into my bottle when I hit one hour of running. I had felt the hint of an urge to pee in the first few miles of the race, but figured it would go away and it did. No bathroom stops—hooray!

Brooklyn was a party the whole way through, but it became a real rager starting in mile eight. The race course narrowed to just one lane of the road, so spectators were super close to us on both sides and they were wild. It reminded me of the Tour de France, like one of those little mountain towns where people absolutely lose their minds as the world’s best cyclists race to finish a stage. I’d read about the crowd support at the NYC Marathon, but nothing can prepare you to actually experience it. In the words of Rihanna / Nils Sjöberg / Taylor Swift: “Baby, this is what you came for.”

After that, I think I turned on my music for the first time running through a quiet Orthodox Jewish neighborhood. Listening to “Welcome to New York” in New York while running the New York City Marathon? Chef’s kiss.

I crossed the half-marathon timing mat in 2:08:05 and felt great, both physically and about my pace. I was treating it like a long run and keeping my bus seat-mate’s advice about running on a leash for the first 18 miles in the back of my mind. I hoped to have the energy to bust through the wall at mile 20 and maybe even pick up the pace a little after that. (LOL!)

Note who’s right in front of me in the photo above: a woman named Janet, of course!

After crossing the Pulaski Bridge, we were only in Queens for a few miles, and I have no distinct memories of it. I did stay with a friend in Queens during my first-ever trip to NYC in 2011, so I was like, “Hey, I’m back!”

Then the Queensboro Bridge—the second longest in the race—carried us into Manhattan. I listened to more music and marveled over how 1989 is just front-loaded with banger after banger. I’m pretty sure I heard “Out of the Woods” on this bridge and it really hit.

Coming off the bridge, I heard the infamous First Avenue wall of sound and searched the crowd for my dad, since he said he’d be at mile 16. There were sooo many people, though, and I didn’t see him. Turns out the marathon app was a bit wonky and showed me in a different spot than I actually was, so we missed each other. Oh well! The search kept me busy for the first few miles of the long trek up First Avenue.

I saw Aaron again at mile 17 or 18, and he gave me an Oreo, per my pre-race request. The problem was that my stomach felt great and I didn’t want to potentially mess it up with a lot of sugar, so I just held onto it for a few miles before tossing it.

It was not hot, per se, but warmer than I’d like and I remember looking for shade to run in at this point and for the rest of race.

First Avenue seemed to drag on forever, so it was awesome to see the Alzheimer’s Association cheer squad at mile 19. They tracked every single one of the runners on our team and gave us a hero’s welcome as we passed by—so lovely.

Over the Willis Avenue Bridge to hit miles 20 and 21 in the Bronx—great music there!—then over the Third Avenue Bridge to head back to Manhattan for the final time. Someone had a sign that said “LAST DAMN BRIDGE!” and thank goodness, because I was wondering.

My legs started feeling really dang tired in Harlem. I started walking through water stations and treating myself to a little walking here and there where there was shade. I started dumping a cup of water over my head at each station, too.

I saw Aaron again at mile 23, took another Oreo (only ate half) and told him I was taking walk breaks. He said, “Not anymore! 5K left, go, go go!” I wanted to run the rest of the way, but my little walk breaks felt sooo nice. And the race atmosphere was so incredible—a once-in-a-lifetime experience for me—that I didn’t mind taking a bit longer to enjoy it.

Fifth Avenue was kind of a blur. I ran out of Nuun (had dropped the last two tablets into my bottle at the two- and three-hour marks), so I started drinking Gatorade at the aid stations. As diligent as I tried to be about electrolytes, I could feel a crust of salt on my temple and knew I needed more. I ate my last UCAN Edge at mile 24. We entered Central Park, which was super cool, and I tried to limit my walking after that.

My watch was measuring more than a half-mile ahead, so seeing mile 25 pop up on my watch but knowing I had so much farther to go until the actual mile 25 marker was torturous. I wish I’d hit the manual lap button at each mile marker instead. Next time!

I thought my dad was going to be at mile 25 and was bummed when I didn’t see him. I didn’t want him to have come all the way to NYC and miss me completely during the race. I did see my Instagram friend Grace, though, which was unexpected and awesome!

I picked up the pace as much as I could and continued to scan the crowd for my dad. People were packed in like sardines and I had no idea how to spot him, but then I realized he’d probably be the only guy wearing a mask. Sure enough, closer to mile 26, I spotted him wearing a blue surgical mask and smiled the biggest smile. I ran closer to him and waved, then rode that burst of energy toward the finish line.

I saw a sign that said 800 meters to go, but that last stretch felt more like 8 miles. I was on a tear and tried to pass as many people as I could. It took forever, but I finally saw the finish line ahead and couldn’t believe it—I was actually going to finish the New York City Marathon.

I pushed my sunglasses on top of my head, smiled my biggest smile, threw my arms up and crossed the timing mat in 4:22:07 (10:00 average pace). I had hoped to finish under 4:30, so I was thrilled!

DONE. So. Freaking. Happy!!!

My Garmin splits are way off, but at least you can see what I was seeing on my watch, and that I did manage to speed up somewhat for the last bit. And the hills—no joke.

My legs actually didn’t feel too bad afterward and it was nice to keep moving as I walked to collect my medal, bag of goodies and fleece-lined poncho. I was hungry so I had a couple of pretzels from the goodie bag, but they were like dust in my mouth. Then I felt like I might puke and the only place it seemed feasible to do that was in one of the plastic bags tied to the fence to collect bottles and garbage. I kind of hunkered over one of those bags for a few minutes until the feeling passed.

The walk out of Central Park and to the family reunion area took a long time. I crossed the finish line at 2:12 and the photo with Aaron below has a 2:53 timestamp. I’m sure Aaron was sick of waiting for me, but I didn’t mind the time to walk and process what just happened. I would have felt differently if it was cold or rainy out, I’m sure.

I got teary eyed when I saw Aaron, and fully burst into tears when we met up with my dad. He said he was proud of me, and that my mom was proud of me, too. I know she would have loved to have been there.

Aaron was the MVP of the day. He rode 56 miles (!) on a non-electric Citibike to see me at so many different parts of the course. When we got back to our hotel, he also went and stood in line for 40 minutes at The Halal Guys across the street because a beef gyro platter sounded sooo good to me (and it was). He was probably just as tired as I was. Best husband ever.

I cleaned up and we went to Morandi for dinner with my dad. I enjoyed a long-awaited glass of champagne and the most delicious lasagna. J. Smith-Cameron, who played Gerri on Succession, was there, too!

Even though my body was exhausted, my mind was buzzing with excitement and I could barely fall asleep that night. Despite being the second slowest of the nine marathons I’ve run, it was by far my favorite and the one I’m most proud of.

Part of me wishes I’d been able to have a stronger training cycle, but perhaps things worked out as they should have. I’m sure, with my mom beginning hospice care, the last thing I needed to do over the past few months was put myself through the wringer in pursuit of a PR. And if I’d been focused on my time during the race, I’d have missed all the magic New York City has to offer.

I have so much to be thankful for, especially that the injuries that plagued my training never made themselves known during the race. My knee behaved perfectly, and the tendonitis—what tendonitis? Even in the days after the race, the only thing I felt was soreness in my quads from all the hills. Thank you to my PT angels, to my foam roller and resistance band, and to all the beautiful rest I enjoyed while tapering.

Everything was perfectly imperfect, just how it was.

I look back on this experience, and the last four years, and think: Alzheimer’s has taken so much from us. It stole my mom, Evie’s nana, Don’s wife. It will take Janet eventually.

But it couldn’t stop me from having the best day in New York.

I will hold on to that for a very, very long time.