This Body is Bullshit

Ten Years

Before the last thing he said to me that night, I was lying there feeling genuinely grateful.

Grateful for him, for our life, for the little world we’ve built. Something good had been taking shape because of his hard work, and I was thinking about how I wanted to tell him that in the morning. How much I appreciated him. How excited I was.

And then came a quiet comment. Not loud, not cruel — just a small thing that landed in exactly the wrong place. The kind that finds the crack you didn’t know was there. I took a Xanax because I knew if I didn’t it would eat at me all night. It ate at me anyway.

I’m not going to get into the specifics. That’s not what this is. What I want to try to say is the thing underneath it.

He is a good man. A genuinely good man. He takes care of our dogs like they’re his kids and Grace like she’s his own. He vacuums, mops, does laundry, mows the lawn, picks up after me and the dogs without complaint. I am grateful for that every day. But sometimes it feels like he’s done everything before I even get a chance to, and then — without meaning to — he keeps an invisible scorecard. One where I always come up short.

I do things he doesn’t always see. Quiet things. Emotional things. The invisible labor that keeps the edges of our life from fraying — the kind that doesn’t show up on a list or look like productivity but is always there. And even when I’m exhausted or in pain, I’m still trying. Still holding things together. Still showing up. Sometimes his version of contribution is about quantity. Mine is about quality. We’re not always measuring the same thing.

We’re coming up on ten years of marriage next month. Ten years. I want to feel that connection again — the joy, the laughter, the partnership that made us us. Lately it feels like we’ve drifted into parallel lives. We share a home and a history and a love, but we don’t always share a rhythm.

I love him. And sometimes I wonder if he even likes me.

He gets irritated easily. Shuts down. Scrolls his phone instead of talking to me. I end up feeling invisible in my own living room. I miss when we used to laugh, really laugh. I wish he’d take initiative sometimes — make a plan, be spontaneous, show some excitement about doing something together. I try to snuggle closer and he pulls away a little, and I don’t always know what to do with that.

I’ll be honest about the thing I don’t say out loud much: sometimes I worry he’s not attracted to me anymore. My body has changed so much. The scars, the weight, the medication, everything. I don’t need constant romance. I just need to feel wanted. And sometimes I don’t.

He says no to most of my ideas. I know he doesn’t mean to shut me down — that’s just how he moves through the world, cautiously, slowly. But my excitement seems to wear on him sometimes. My silliness, my energy, the parts of me that used to make him laugh — I can feel when they become too much. I know I’m a lot. I’ve always been a lot. That used to be something he loved.

There’s one more thing I can’t shake, and I’m going to say it even though it’s uncomfortable: he’s never really read this blog. My blog isn’t something I do for fun. It’s how I process everything. It’s my therapy, my truth, the realest version of me trying to make sense of my own life. And the person I share a bed with hasn’t really gone there. Maybe it’s too uncomfortable. Maybe he just doesn’t want to. But it means he doesn’t see the part of me that’s been trying to reach him in the only way I actually know how.

I’m not saying this to guilt him. I’m saying it because feeling unseen by the person who’s supposed to know you best is its own particular kind of lonely.

I don’t want to stop reaching for him. Ten years in, I still want the laughter and the spark and the feeling of being on the same team. I still want us.

Some days that feels possible.

Last night wasn’t one of those days.

Trail Magic

There’s this thing hikers talk about called trail magic. A good Samaritan leaves snacks or cold drinks somewhere along the path — something a weary traveler stumbles upon when they need it most. It’s not really about the food. It’s about the reminder that someone out there believes in what you’re doing, even if they don’t know you. That someone cares.

I’ve been thinking about that a lot lately. I want to be trail magic for people. Not with Gatorade and granola bars, but with care and presence and the specific kind of showing up that says I see you and I believe in you. I think I do a decent job of making my people know I’m proud of them. At least I hope I do.

Then there’s the less warm and fuzzy thing I’ve been sitting with: ambiguous loss.

It’s the kind of grief that doesn’t have an ending. The kind that leaves you stuck between hope and heartbreak. It happens when someone you love is physically present but psychologically gone — or when they were slipping away long before they actually left. There’s no funeral. No clear before and after. Just this slow, ongoing loss that you can’t fully grieve because the person is still right there.

I coped with ambiguous loss for years with my mom. I grieved her before she died because she was disappearing even while she was still in the room. And now it’s starting again with my dad. Maybe ambiguous grief is the better word. Because it’s loss and longing and confusion and love all tangled together, with no clean way through it. You can’t fix it. You just keep trying anyway.

I’ve been reading everything I can find on FTD. The neurologist recommended The 36-Hour Day and The Unexpected Journey by Emma Willis. The first was brutal — dense, clinical, depressing, a slog. The second was genuinely sweet. But neither had much to actually say about FTD specifically. They’re both really about caregiving in general. I still have no answers. Just the same long list of questions and a growing sense that the answers might not exist yet.

Meanwhile my body is staging a full-scale revolt and I’d like to speak to the manager.

My neck hurts. My shoulders hurt. My back, my hips, my knees, my hands, my feet — all of them, constantly, at varying levels of awful. Some days it’s background noise. Some days it’s the whole concert. The joint pain from these medications is relentless and I’m tired of it and it’s so fucking stupid. I have survived cancer, sepsis, seven surgeries, and radiation, and what’s going to take me out is that I can no longer open a jar without sounding like a sixty-five-year-old man getting out of a lawn chair.

Also, my obsession with animals is becoming a problem. My empathy for furry things is genuinely out of control. I want all of them — dogs, cats, goats, bunnies, tigers, manatees, bears, jaguars, foxes. I scroll rescue pages like it’s a spiritual practice. Maybe it’s because animals don’t need you to fix anything. They just need you to be kind and show up. That I can do. This is probably how I’ll go out — hugging something wild and magnificent. Honestly fine with that.

Kathy went to New Jersey last week to celebrate Mae’s birthday, which meant I was on Dad Duty. I kept him from going out to restaurants in the evenings — we went to his house one night, he came to ours twice, I met him out in the woods with the dog. The whole time I watched his location on my phone like a maniac. Called and texted constantly. Thursday night at his place he didn’t have a drink. Friday and Sunday he wanted one — so I gave him one. Minus the alcohol. He didn’t know the difference.

It was exhausting. I know I was overdoing it. Hovering, tracking, managing every variable. But I can’t help it. If it were up to me I’d keep him home all the time. But that would kill him just as surely as the disease will, just faster. So I give him his virgin cocktail and watch his location and try to breathe.

Somewhere in all of this I’ve been trying to get intentional about what I actually want. What makes me feel good. What I’m doing this for. I want joy. Simplicity. Presence. Not grand gestures — just things that are real and feel like mine.

And I’ve been thinking about this a lot: cancer didn’t make me sick. I had cancer. They took it out. Radiation was hard. The surgeries were brutal to recover from. The scars are tight and always will be. But I was only actually sick when I had sepsis, and when the infections came after surgeries. The rest of it was just living through something hard. Surviving. Which is apparently what I do.

Maybe that’s still what I’m doing now — surviving this strange tangled mess of grief and pain and gratitude and love.

Trying to make my own trail magic while I’m at it.

I got back from Austin Sunday and I’m already trying to figure out how to go back.

What a cool city. Natalie and I ate and explored and laughed and were asleep before 10 every single night like the glamorous women we are. The bed at our hotel was so absurdly comfortable we started calling it the marshmallow. We laid around in the mornings watching TV, took our time, wandered without a real agenda. It was exactly what both of us needed.

I think a lot of people only see one side of Natalie — the funny, bold, life-of-the-party side. But I get the quiet, curious, generous, genuinely thoughtful side too, and that’s the person I travel with. We used each other as sounding boards, recharged, and are already making plans for the next one. She taught me a new card game. I rode an electric scooter for the first time in my life. I was popping 800mg of ibuprofen a few times a day for the joint pain — because my body loves to remind me it’s in charge — but I enjoyed every bit of it anyway. We also may have taken a sleepy gummy before bed each night, which probably explains why the marshmallow felt so magical. When I got home Sunday I couldn’t fall asleep at all. Coincidence, I’m sure.

It was a beautiful day to come home. Matt and the dogs were waiting and I spent the afternoon on the deck clearing out plants for fall, just happy to be in my own space again.

Then Monday hit, and with it, my appointment with Dr. Fine.

I knew it was coming. I’d had it on the calendar. But as the day moved forward I felt the anxiety creeping in — that slow closing-in feeling I’ve learned to recognize. I called Matt from the car to tell him I was feeling off. Sweet and supportive as always. But by the time I was actually driving down there I was having a full-blown panic attack, fighting back tears the whole way, and genuinely unsure why I was so scared.

Dr. Fine talked me down, as he always does. I was supposed to get the nipple bumps that day — a small procedure that would create the physical shape under the skin before getting the tattoos. I thought I wanted it. I thought it would help me feel more normal, help with intimacy, help Matt see me differently. But sitting there in that office I realized — I wanted it for Matt. Not for me. And I wasn’t ready.

Dr. Fine was wonderful about it. He said I could absolutely move forward with the tattoos without the bumps — a lot of people do, because the 3D tattoos are that realistic on their own. And then he drew Sharpie nipples on me to show placement, which was somehow both hilarious and oddly grounding. He also told me to order temporary tattoo nipples on Amazon to try before committing, and warned me — very specifically — not to Google that phrase. Just go straight to Amazon. I will be following that advice.

His PA Lexy was the one who originally talked me into scheduling the bump procedure, and she’s not wrong that it makes things look more natural. I was excited about it when I booked it. But once I was actually there, something shifted. I think what I was really excited about was Matt seeing me that way — and that’s not a good enough reason to do something to my body that I’m not ready for.

When I got home that night Matt and I talked it through. He just wants me to be happy and healthy. I just want him to still find me attractive. It’s such a strange, vulnerable place to be — caught between scars and hormones and the ghost of whoever I was before all of this. We’re figuring it out together. Slowly.

Tonight is the warrior dinner. A group of us — some closer than others, all connected by the thing none of us asked for — getting together for breast cancer awareness month. It’s bittersweet every time. But there’s a sisterhood in it that doesn’t need explanation. We’ve all been through it. We show up. That’s enough.

I Just Wanted to Call My Mom

Last week I really just wanted to call my mom.

We had a complicated relationship, but she loved me — I know that. And I’ve been realizing lately how much I used her as a sounding board. I could call her and bitch and complain and vent about everything making me crazy, and she’d try to make it better. Sometimes she actually did. With everything so overwhelming and out of control right now, I keep reaching for that and coming up empty. It’s a specific kind of grief, missing someone not just for who they were but for the function they served in your life. The place they held. I miss her.

Saturday Matt went golfing with Ken about an hour away, and I had the whole house to myself. Just me and the dogs. I did some chores, laid in the hammock, got some sun, fully fudged out. I cannot tell you the last time I had a quiet day completely alone like that. No agenda. No one needing anything. Just me eating a snack and petting my dogs and watching TV and existing. It was genuinely restorative in a way I didn’t realize I needed until I was in the middle of it.

Ken came back and spent the night. We went out for a drink, picked up food, had a good time. I love having him around. But he’s so stubborn about moving down here from Wisconsin, and it drives me crazy — especially when he hints at health concerns and then refuses to see a doctor. I gave him my thoughts, unsolicited as always. Between my own medical journey, Drew’s, my mom’s, Kirby’s, my mother-in-law’s — I have accumulated enough medical knowledge to genuinely terrify an actual doctor. I’m not a doctor. But I’m also not usually wrong. Ken and my dad both have this infuriating habit of brushing me off like I don’t know what I’m talking about. It’s maddening.

Sunday brunch with two old work friends was exactly what I needed. We walked around the city, caught up, laughed. They always hear me. They get it without me having to explain everything from scratch. We see each other maybe three times a year and every time feels solid. When I got home Matt and Ken were watching the Bears game and my cousin Heather stopped by with her husband for a quick visit. Nice to catch up even if brief.

I didn’t see my dad this weekend but checked in with Kathy a couple times. I called him and could tell immediately he wasn’t in the mood to talk — you learn to read that fast. When Kathy’s around he usually isn’t looking for conversation anyway. He’s obsessed with her. It’s sweet and exhausting in equal measure, but she needs every break she can get.

And then Drew.

He went out, had a good time, came home drunk — par for the course, nobody’s judging. But when he got in the elevator to go up to bed, the door wouldn’t open. The overnight caretaker — whose literal job is to check on Drew every hour — never noticed. Never called. Never thought to go look for him. Drew got home at 12:07 in the morning. He woke up still in the elevator at 6:47 a.m.

Nearly seven hours. Stuck in an elevator. Because the person being paid to keep him safe was asleep.

Jan fired him immediately. Good. But I want to throat-punch this guy. Drew has the absolute worst luck with caregivers and it’s not funny anymore — it’s scary. Finding good ones is already nearly impossible, and Drew keeps getting stuck with people who treat it like a job they can sleep through. He texted me that he was feeling depressed and down. Of course he was. Who wouldn’t be?

On a warmer note — my childhood best friend Amanda reached out when she heard about my dad. We grew up calling each other cousins, basically family. She has real experience with memory issues because of her own dad Fred, who was actually one of my dad’s closest friends. Even as Fred’s memory faded, he always remembered my dad. My dad would bring his dog when visiting, telling all their stories, lighting up the room. Fred had a wonderful caregiver named James, and I’ve filed that name away in the back of my brain for whenever we get to the point of needing someone. Amanda sent me a long email of resources and ideas. We’ll talk properly when life slows down. Next time I’m out in California with Natalie I’ll see if I can get to her too.

And since October is basically here — breast cancer awareness month — I texted some of my fellow warriors and we’re planning a warrior dinner. Not to relive it all. Just to be together. That sisterhood is real, even when nobody wants the membership. Last time there were four of us. Now we’re six.

Sunday night Matt asked me what was wrong. I said besides the usual Monday dread — I’m just sad. Carrying that weight of no answers and no clear path forward with my dad and not knowing what’s coming. That quiet grief of missing my mom and not being able to call her.

But this week will be good. Work will keep me busy. Pilates will keep me sane.

And Austin is almost here. Natalie’s 50th. I cannot wait.

The 36-Hour Day

I keep having this vision of my dad getting lost in the woods and me having to call everyone I know to organize a search party. My brain just keeps going there — what if this happens, what if that happens, what if he gets in the car and we can’t find him. I don’t know what to do with these thoughts because there are no answers. Just questions that loop.

How do I get him to stop drinking before he falls and really hurts himself? Because that’s what I’m scared of — not the drinking killing him, but him getting drunk, slurring his words, shuffling around, and going down hard. And God forbid you try to take his arm. He’ll pull away and get pissed off because he doesn’t want anyone thinking he needs help. That pride is going to be the thing that gets him.

How do we get him off the road? He gets lost and then loses his mind when you point out that he got lost. What happens if he hurts someone? What happens if Kathy loses everything because of an accident? There is truly nowhere he needs to go and nothing he needs to do without one of us with him. But how do you take away someone’s independence without stripping their dignity? He’s so damn proud. So vain. It feels impossible.

Does he even know what’s happening? Does he have any sense of it at all? Every book and article says he can’t comprehend it, that there’s no explaining or reasoning with him, that we’re the ones who have to adjust because he can’t. I understand that intellectually. I cannot accept it emotionally. I keep thinking if I find the right words, the right moment — but there is no right moment. That’s the disease.

Meanwhile Kathy is go-go-go every single day and she is going to burn out. She’s living with this every minute and I don’t know how to help her slow down and breathe. I worry about her as much as I worry about him.

I’ve been trudging through The 36-Hour Day — supposedly the bible for caregivers. It’s long and depressing and half of it is obvious and the other half is dead-on accurate and I can only do the audiobook because if I try to actually read it I fall asleep. I’ve been listening to it in the hammock in the backyard, sun on my face, just swinging and existing and absorbing other people’s grief about this disease. It’s become my weird little ritual and I’m not sure if it’s helping or just keeping me company in the spiral.

All of this is in my chest and my brain and my sleep. I wake up exhausted and clenched. And then I go to work where grown adults cannot follow basic directions and I have to write them up. Fucking idiots. And then I wonder — do I have dementia too? My memory has been genuinely terrible lately. Probably just the menopause, the anesthesia from surgeries, the medication, the three thousand things I’m tracking at any given moment. Probably.

There was a rainbow this morning. I took a picture, posted it, wished everyone a good day. It didn’t really sink into me. But I’ll smile anyway. Make people laugh. Get my job done. That’s what I do.

At least Frank is on the mend. Finally acting like himself again — aside from the explosive diarrhea this morning. Living room, dining room, and laundry room. Because of course.

And one more thing — why does nobody ever tell me when my eyeliner is halfway down my face? My husband did point out a whisker the other day though.

That’s love.

I had breakfast with my cousin Greg this weekend, which is basically a miracle because the only time I usually see him is at funerals or weddings. He grew up on the East Coast and lives in Florida now. His dad — my mom’s brother — drowned when I was in junior high. It happened in Hawaii. My aunt Becky, my grandma, and Greg as a newborn were all on the beach when it happened. I’ll never forget it. Greg looks so much like his dad that it still catches me off guard every time I see him.

Twelve years between us, but that never mattered. He’s always been easy to talk to — open, no bullshit, no awkwardness. He seems to be in a good place now, basically a great stepdad, kind of like Matt. He’s a fucking catch and I just want to make sure the woman in his life knows that. Really knows it. He’s sweet and hardworking and kind, and he deserves someone who sees all of that and doesn’t take a single bit of it for granted. That’s all I want for him.

On the way home I stopped at the Starbucks where Maggie was working. She spreads herself so thin but she looked good — better than the last time. Sweet as always. Honestly she was probably checking on me as much as I was checking on her. We spotted a bald eagle mid-conversation, which completely derailed me because I cannot function when there’s wildlife nearby. I’m out there craning my neck like I’m on safari while she’s trying to have an actual conversation. Fittingly, we may have been talking about ADHD at the time.

Then I got home and realized I’d missed my cousin Bryon’s birthday. He’s one of my favorites on my stepdad’s side and he is always — always — so thoughtful about those things. Meanwhile I just forgot his entirely. Classic. I feel terrible. Hopefully I’ll see him next weekend with his new wife Laura, who is just lovely, and we can celebrate him properly. Ken’s supposed to be in town too, so fingers crossed for a real gathering.

Last night was our block party. There was a collective side-eye going in — everyone quietly wondering if our neighbor with the ongoing mental health situation might show up and make things interesting. She and her husband didn’t come. And honestly, thank God, because the turnout was the biggest we’ve had in four years. People stayed until 10. I bailed at 7:30 because my social stamina outside my inner circle is genuinely embarrassing. Still — nice to see familiar faces, meet a couple new ones. I missed Carol and Vito though. It wasn’t the same without them.

This morning I snagged a last-minute Pilates spot off the waitlist and it made my entire day. Got some meal prep done after, cleaned out a couple cabinets, and now I’m lying in the hammock. I wish I could do this so much more. I truly do not understand people who go nonstop all weekend. My weekends are the only time I have for errands and chores since I don’t get work from home days, so downtime has to be intentional or it just disappears. I’m working on that.

I did some catching up with people too. Briefly talked to Natalie, had a nice call with my Aunt June — who is starting to remind me more and more of my grandma, which is both sweet and a little heartbreaking — and a long, really good conversation with Aunt Susie on Friday while I was home with Frank after his procedure. Poor guy was completely wrecked from the anesthesia for two and a half days, but he’s finally back to his pompous little self.

Susie though. She’s the glue. She keeps everyone connected, carries more than her share, and still makes time to check in on everybody else. She’s a beacon. She also might be my biggest blog fan — she makes me feel good about writing this even when I’m not sure I should be, and I have a feeling she’s shared it with more people than I realize. So if you’re new here, hi. This is therapy. It’s messy and honest and I try not to let it turn into a full pity party, but no promises.

Aunt Susie and Uncle Brad joined Greg and me for breakfast too, which made it even better.

Now it’s Sunday night. The Scaries are creeping in right on schedule. Tomorrow will probably be another one of those Mondays where I need a crane to get out of bed. I want to get back to walking this week, keep the Pilates going, try to feel like a functioning human.

But for now — hammock. And the seventy TikToks Grace has sent me that I still haven’t watched.

This morning I dropped Frank off at the vet for his dental procedure and I just wanted to cry.

They’re cleaning his teeth, but while he’s under anesthesia they’re also biopsying a lump in his gum that doesn’t seem dental-related. On top of that they’re scoping his esophagus and looking into his sinus cavity to check for blockages. He’ll probably lose some teeth. Best case scenario there’s a pea or a toy wedged in his nose, which would be very on-brand for Frank.

Poor little guy weighed in at 23.4 pounds. They want him closer to 20. He’s a pug, yes, but he’s my portly pug — the silly, stubborn, loud little jerk who somehow filled the gaping hole Gus left behind. God forbid anything happens to him today. I can’t even think about it.

Yesterday I was already in a tailspin. One of those days where I sat at the bottom of the shower until the water ran cold, not wanting to move, just completely overwhelmed. I ended up going to the doctor and they upped my antidepressant. I’ve been on the lowest dose for almost four years. It feels overdue and also exactly on schedule.

And then life kept piling on, because that’s what it does.

We got some tough news about Heather — Kevin’s sister, my stepsister Crissy’s sister-in-law. When I reached out to tell them I loved them, Crissy said it perfectly: a real kick in the dick. Yes. Exactly that. My friend Megan always called it a shit sandwich. Both are accurate. Both linger.

What breaks my heart is how much Crissy and Kevin already carry. The grief of losing Wes is still stitched into everything they do, every day, and it never fully lifts. And now this — Heather, who is quite possibly both of their favorite person in the world, going through something awful. It feels cruel in the specific way that life sometimes is, piling more pain onto people who have already had more than their share. I don’t have words for it. I just keep thinking about them.

The doctor finally responded to my MyChart messages about my dad. I wasn’t impressed. Half of it isn’t really his fault — it’s just the limits of what medicine can tell us right now — but half of it felt like not enough. I think most of the real answers are going to come from the social worker when we finally get in. Until then we’re just floating. And I hate floating.

I reached out to Michelle from The Sister Project — she and Crissy went to school together, and her family went through FTD with their mom. She affirmed how brutal it is and sent some research resources. It helped a little to feel less alone in it. But there’s no roadmap. That’s the thing. There’s just no roadmap.

In a couple weeks I’m heading to Austin for Natalie’s birthday. She’s basically treating me to the trip, which feels terrible because it’s her birthday — but she just went through a breakup and honestly the timing is right for both of us. She swears I’ll love Austin because it’s super liberal, which is hilarious given that she’s on the other end of the political spectrum from me. Not a Trumper, thank God. I’m excited. I need to laugh and reset and have some heart-to-hearts and just breathe for a minute.

Right now though I’m racing to work, already late, possibly going to have to log on from the car because I’m twenty minutes out and in ten minutes I’m supposed to be running an ICE-prep Q&A for some of my team. Let that sink in. Getting my employees ready in case of an immigration raid. That’s the world right now.

Once I get to work I usually leave everything at the door, which is both a blessing and part of why I’m burning out. My whole job is other people’s feelings and behaviors and drama. Some days I’m an HR generalist. Some days I’m a kindergarten teacher. The line between the two is thinner than it should be. At least today I’ll be at Hillside, which is fine, just not the same as Melrose Park. MP is family. Here it’s just work.

Anyway. That’s where I am this morning. Anxious, exhausted, hopeful, nervous — all of it at once.

Please send good vibes for Frank today. He’s my chubby stubborn little guy and I need him to be okay.

I can’t believe this is entry twenty-six. Twenty-six times I’ve come here and put the chaos into words. It doesn’t fix anything. But it makes me feel lighter.

One messy, fucked-up, trying-to-be-honest entry at a time.

I Just Don’t Know Where I Am

We have the diagnosis now. FTD — frontotemporal dementia. And somehow having the name makes it worse, not better, because now I’m drowning in questions nobody is answering fast enough.

What specific type does he have? What side of the brain is most affected — is this primarily behavioral or is there physical progression coming too? What stage is he in? Because I think this has been going on for years and we’ve just been explaining it away — his hearing, his lack of interest, the things we told ourselves were just him getting older. How long has it actually been? And how fast is it going to move from here, because it feels like it’s accelerating. What does life expectancy look like now?

The appointments are impossible. My dad takes over the room — stories, jokes, nothing serious, never serious — and by the time the doctor gets a word in there’s no time left for the real questions. We’re waiting to get back in with the social worker. Until then we’re just trying to survive it day by day and I don’t know what I’m doing.

He doesn’t know he has it. That’s the part I can’t get past.

He got lost recently — drove somewhere and couldn’t find his way back — and when we tried to gently bring it up, he said: I’m not lost. I just don’t know where I am.

I’ve been thinking about that sentence ever since. Because on one level it’s heartbreaking. And on another level it’s exactly the disease — he genuinely doesn’t see the gap between those two things. Lost is a trigger word for him anyway. Say it and he flips. He was a pilot once, and he still clings to that like proof that he could never be someone who gets lost. The version of himself he carries around in his head is decades old and he has no idea.

The doctor suggested puzzles or brain exercises. My dad asked if he could do home projects and trim work instead. The doctor said to ease up on power tools. My dad thought he was out of his mind. But the truth is he hasn’t been able to finish a project in a long time — measurements off, angles wrong, nothing quite right — and he blames the tools, the wood, the instructions, anyone and anything but himself. The doctor said one or two drinks occasionally. My dad wants his drinks daily and sees no reason why not.

If it were up to me I’d take the alcohol out of the house and the car keys off the counter. But Kathy is the one living this every single day and I want to support her, not override her. She’s terrified that if he really understood how bad things are he’d say he doesn’t want to live anymore. She might be right. He’d probably say something like that. Would he act on it? I don’t know. That’s the nightmare inside the nightmare — we can’t even have that conversation clearly because he can’t hold onto it. The weight of all the decisions lands entirely on us while he doesn’t even know there are decisions being made.

I want to sit down with him and just tell him plainly. This is what’s happening. We’re trying to keep you safe. We love you. But everyone says he won’t be able to hold onto it, that it won’t stick, that I’ll say it and an hour later it’ll be gone. And I can’t fully accept that. I keep thinking if I just find the right words, the right moment, the right way in. I know that’s probably not how this works. I know.

He’s still sweet though. Still sensitive and emotional in these moments that catch me off guard. Still makes me laugh sometimes. Both things are true and somehow that makes it harder.

I’m not sleeping. I wake up with that ache in my chest — part heartbreak, part anxiety — and I carry it into work where I spend all day managing everyone else’s problems. I’m an HR person. Feelings and crises are my job. And I’m doing it while barely holding my own together.

Tonight I’m going to a wake. My girlfriend just lost her dad after years of caring for him through multiple strokes. I don’t know how she did it. I can barely manage what I’m managing now and we’re still near the beginning of this.

I hate this disease. I hate what it’s taking from him and what it’s taking from us. I hate that there’s no treatment, no slowdown, nothing to fight with. I hate that he’ll never fully understand what’s happening to him and I hate that in some ways that might be a mercy.

I’m holding grief and anger and exhaustion and love all at the same time in the same tired body.

I don’t know how long I can keep doing that.

But I don’t really have a choice.

A Lot in a Few Days

The weeks have been feeling extra long lately. By Tuesday at work I swear it should already be Thursday.

This week started heavier than most.

Monday we had a follow-up with my dad’s neurologist. After months of questions and watching and not quite knowing, we finally got the official diagnosis: FTD — frontotemporal dementia. The same thing Bruce Willis has.

We knew it was some form of dementia. We’d been bracing for something. But hearing those three letters out loud still hit hard. There’s no treatment. Nothing to slow it down. No roadmap. And the cruelest part of this particular disease is that he doesn’t know he has it — he genuinely cannot comprehend it. If you know my dad, you know he’s a stubborn, proud, impossible maniac who has never once made anything easy. This is not going to go smoothly.

I’ve been walking around with this weird ache in my chest ever since. Part heartbreak, part anxiety. Not sleeping much. It’s all-consuming in a way that makes me forget what else I’m supposed to be worried about, which is saying something because my list is usually long.

And yet life keeps moving, because it always does.

Friday we hosted the birthday party for Kathy, Cory, and Amy — muumuus required, laughs mandatory. It was a good turnout and everyone needed it, especially Kathy. But of course it wasn’t without a hitch. She got dropped off by my dad, and on his way home he got lost. It put a shadow over the evening that we tried to push through. We mostly succeeded. Cory stayed the night, helped me clean up, and just having her there was a comfort I didn’t realize I needed that much.

Saturday the ladies had a day — farmers market and boardwalk shops in Batavia, then lunch and more shopping in Geneva. It was exactly the kind of ordinary nice day that feels like a gift right now. We wished Cory had stayed longer, but she headed home after one of her heart-to-hearts, leaving us with love and hope the way she always does. Then Kathy went home. Back to my dad. Back to life.

Sunday, Matt and I went to the celebration of life for his friend Geoff. It was a good service — really touching. Geoff’s daughter spoke. She’s 21 and has now lost both of her parents, and she stood up there and did it with such grace. It was heartbreaking and beautiful at the same time. Rusty and Ben both spoke too, and somehow both of them managed to get a laugh out of everyone while clearly being devastated. That’s a gift. Watching these guys grieve together, show up for each other, make sure that girl knows she’s not alone — it meant something.

It’s been a lot for a few days. Diagnosis, party, loss, laughter, grief, all of it tangled together. That ache in my chest is still there.

My daughter sent me a Michael Jordan TikTok in the middle of all of it and honestly — I needed that. Go back to those days. I miss Michael Jordan.

Tomorrow it’s Monday again.

Drew

I spent the afternoon with Drew because I needed him. I was still feeling out of sorts — tight chest, depressed, stuck in my own head — and he’s just the person I reach for in those moments. The one who grounds you without needing an explanation. That’s a rare thing.

Drew and I go way back — to high school. I was a sophomore, he was a freshman, and I was “going out” (as we said then) with his childhood best friend and neighbor. That’s how we met. Pretty quickly, Drew became my friend too. He even dated one of my girlfriends for years — on-again, off-again, of course — so our lives stayed connected.

He was always the wild man. The first person I ever did psychedelics with. The one with the epic house parties — huge bonfires, a pool, a piece of property made for teenage chaos. We had a special connection from the start.

There was a stretch when we drifted apart, mostly when I was with Grace’s dad. Drew would get drunk and leave hilarious, ridiculous, sometimes a little too sexy messages on my answering machine in the middle of the night. Let’s just say Grace’s dad wasn’t a fan. But Drew understood. We always cared about each other, even when we weren’t in touch.

I still remember being nine months pregnant and running into him at a graduation party after not seeing him for a long time. His face lit up, eyes wide at how enormous I was. He thought it was hilarious and wonderful at the same time. We laughed. It felt like no time had passed.

That’s the thing about Drew — he’s not just a friend. He’s my only male best friend, which feels rare. We can be raw and emotional and vulnerable with each other in ways we aren’t with anyone else. We tell each other everything. He’s family.

But Drew’s story isn’t easy. Not long after college, he had a skiing accident. He broke his neck and was paralyzed — from the triceps down, as they put it. He can move his arms but lost fine motor skills. He went from being this outdoorsy, physical, larger-than-life guy — skiing, rafting, bodybuilding, construction — to suddenly having to relearn how to live.

I’ll never forget visiting him at RIC when he was still in a halo. It was heartbreaking. But Drew being Drew, he didn’t lose his humor — or his perverted streak. Nurses would give him sponge baths and he’d tell them, well you’ve got your boobs in my face, what do you expect? That’s just Drew. He found a way to laugh even when everything had changed.

The harder part wasn’t his sense of humor — it was people. People pulled away. They didn’t know what to say or how to act, so they just disappeared. The guy who had always been the life of the party was suddenly alone when he needed people most. That part still makes me angry for him.

It took a long time, but Drew found his way back into the world. Social again, going out, living life. He still parties a little harder than he should sometimes — I’ve yelled at him plenty for the next-morning apology tours he has to make — but that’s Drew.

Over the years we’ve had so many moments I hold close. Staying up until two or three in the morning in his van, playing Name That Tune with my iPod, only three seconds per song. One of the funniest concert stories ever: on the way to Pearl Jam, stuck in traffic, hot as hell, and he asked me to pour some water on his head. Out of all the bottles, I grabbed the one filled with vodka he’d packed to smuggle in. Straight vodka. On his head. He was pretty irritated. I was crying laughing.

More recently he had another brutal surgery — one that could’ve taken him out. He spent months in the hospital. I went as often as I could, and even then we found ways to laugh. One time I finally got him out for a walk down by the lake. We stopped at a café and there he was, hospital bands still on his wrist — including a DNR one — having a drink like he’d just strolled in from the office. I don’t know what people thought I broke him out of, but we were quite the sight.

Drew stood beside us at our wedding. He is part of our family in every way that matters. Matt and I have talked about it — if anything ever happened to his mom, Drew comes to live with us. He is ours.

He is more than a friend. He’s my brother. My history. My witness.

I don’t know what I’d do without him. And I realize I don’t spend enough time with him.