Hello, friend.

When people find out I’m helping care for my elderly father, they sometimes get a misty look on their face, like they’re witnessing a redemption arc. Like the difficult history between us has been resolved or healed or set aside in some meaningful way.

I want to be careful here, because I don’t want to be unkind about the people who offer me that look. They mean well. They’re moved by what they imagine is happening.

But what they’re imagining isn’t quite what’s happening.

A recent The Ethicist column in The New York Times Magazine posed a question I’ve been sitting with: what do we owe parents who failed us? A letter writer estranged from a neglectful, emotionally abusive mother now showing signs of Alzheimer’s was told by her mother’s husband that she would be responsible for her care. The Ethicist’s response was clear: nobody has the right to ask this of you, and we have no duty to abandon our own lives to look after parents who failed in their parental duties.

I agree with that answer completely. And I also need to say something about my own situation, because I think people sometimes look at what I’m doing and draw the wrong conclusions.

I haven’t forgotten what led to my estrangement from my father for 12 years. During those years I did an enormous amount of therapy. I built skills I didn’t have before: how to set limits with people who push them, how to identify what I can control and release what I can’t, how to be in relationship with someone difficult without letting them damage me. I did that work not because I planned to reconnect with my father someday, but because I needed it for my own life.

It turned out to be useful when I did reconnect.

I came back into relationship with my father before his Alzheimer’s had significantly affected his memory. The therapy, the boundary-setting, the years of practice at knowing what I would and wouldn’t tolerate meant I could show up for him without losing myself in the process.

He may not remember our history now. But I’m not showing up because the slate has been wiped clean. I’m showing up because I made a decision, based on my own values and my own capacity, that helping him was something I could do without it costing me more than I could afford.

I’m doing it because he is a human being who needs help, and I am someone who can provide some of that help. I’m doing it because my sister is also in this with me, and I love her, and I don’t want her carrying it alone. I’m doing it because—and I say this with full awareness of how complicated it is—I can. I’m a widow and an empty nester, which gives me some time and energy to put toward him.

None of that means I think he deserves this from me. Deserve is a word I’ve tried to stop using in the context of caregiving, because I’m not sure it does useful work. When I was Tom’s caregiver, I wasn’t there because he deserved it—I was there because I loved him and he needed me.

My decision to help my father has nothing to do with anyone else’s decision about their own estranged parent. I am not a model. I am not an argument. I am not evidence that reconciliation is the right choice, or that estrangement is something to eventually “overcome,” or that people who don’t reconnect with difficult parents are making a mistake. The woman who wrote to the Ethicist should not feel one iota of guilt for saying no. Her situation is her situation. Mine is mine.

The people who look at me with that particular warmth think they’re seeing someone who chose connection over distance. But what they may not be seeing is all the work that made that choice possible, or the clear-eyed understanding I brought to it, or the fact that I still know exactly what happened between my father and me, even if he doesn’t.

Yes, I have forgiven him, but forgiveness doesn’t mean what people sometimes imagine. It doesn’t mean pretending the bad stuff didn’t happen, or that I’ve decided it was acceptable, or that I’ve rewritten the past into something softer than it was. I remember it clearly. Forgiveness, as I practice it, means I’ve accepted that it happened and I no longer carry it as an open wound. It means I hold no ill will. It does not mean I’ve forgotten. What I’ve done—and this took twelve years of work—is find a way to be present with him without being harmed by him. That is not available to everyone, and it is not required of anyone.

It is simply what I chose.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

PS: My self-paced Journaling for Grief course is now available. It includes six lessons—audio recordings, written reflections, and journaling prompts—that you can move through at whatever pace feels right. Grief doesn’t follow a schedule, and neither does this course. You can find it here.

Hello, friend.

When my sister and I made the plan to take my father to the botanic garden for Father’s Day, I imagined myself walking all over the beautiful gardens, past the lavender and sage, to the water features, and up as close as possible to the Chihuly glass sculpture by the neighboring old mansion.

Instead, I sat in a complimentary wheelchair while my sister pushed me.

My left leg—hip to foot—was painful and tender that morning in a way that made every step hurt and feel precarious. I stood in my kitchen before we left and did a quiet negotiation with reality: I could go to the gardens and be present for what was actually possible, or I could cancel and spend the day grieving the version of it I had imagined. Those were the only options. There was no magical third door where my leg decided to cooperate.

I asked my sister if she’d push me if I got a wheelchair. She said yes without hesitation, without making a face, without making it a thing. And it wasn’t a thing. We went, it was beautiful, and I was there for it.

But I want to be honest about what that choice cost, because I think we don’t talk enough about the cost of acceptance—the way it isn’t a one-time decision but something you have to keep making, with every new moment. When I was at the garden with my sister and father, I had to keep deciding with every turn that I was going to be OK with being in a wheelchair and not walking around the way I had imagined.

I have a complicated relationship with my body right now. It has been through a lot. And I am trying to hold two things at once: gratitude for what it can do, and grief for what it can’t, without letting either one swallow the other.

The gratitude part I can usually find. I made it to the botanic gardens. I saw the Chihuly sculpture and smelled the lavender. I spent Father’s Day with my dad and sister and we had a good day.

The resentment part is also real. I resent needing the wheelchair. I resent that my body made a decision my brain hadn’t agreed to. I resent that acceptance is work, that it doesn’t just arrive, that I have to choose it deliberately and then choose it again twenty minutes later when I’m watching other people walk past me on two working legs.

Most evenings I take my dog Luna for a walk. Because Luna is a dog, her needs are simple and her happiness is immediate: she wants to get outside, eat a little of the neighbor’s grass, sniff different things. She has no opinion about the length of the walk. She is fully committed to whatever walk she is currently on.

I intend, most evenings, to take her on a long one.

Many evenings my foot says no.

So we do a short walk instead, and Luna adjusts in approximately zero seconds, because she is a dog and she has not built her sense of self around being able to take long walks. I take longer. Some nights I get there—I feel the air, I watch her be delighted by a smell, I let the short walk be enough. Other nights I come home still carrying the frustration of the walk I wanted, dragging it behind me like a bad mood I can’t shake.

The gap between Luna’s adjustment time and mine is, I think, the work.

I don’t have a tidy conclusion here. What I have is a warning to myself.

Because resentment, if I’m not careful, curdles into bitterness. And bitterness is a different animal entirely. Resentment I can work with—I can feel it, name it, set it down. Bitterness is more dangerous. It comes with me everywhere. It has a low-grade anger to it that clouds everything—the lavender, the Chihuly glass, Luna’s delight at a particularly interesting smell. When I’m bitter I’m not just failing to notice the good stuff, I’m actively sucking the joy out of it, and not just for myself but for whoever’s around me, from my sister pushing my wheelchair to my dog who just wants to sniff things in peace, to the employee at the garden who brings me the complimentary wheelchair and has no stake in my life.

So that’s the actual work. Not just accepting what my body can do, but catching myself before resentment becomes something harder to shake. Noticing when I’ve crossed the line from grieving what I’ve lost into stewing in it. Coming back, again, to the lavender. To the short walk. To Luna, who has already moved on and is eating the neighbor’s grass and is completely fine.

She’s better at this than I am. Some days I just want to drag that bad mood home.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

PS: My self-paced Journaling for Grief course is now available. It includes six lessons—audio recordings, written reflections, and journaling prompts—that you can move through at whatever pace feels right. Grief doesn’t follow a schedule, and neither does this course. You can find it here.

Hello, friend.

I’ve been spending the last few days deep in revising my memoir about the year I was my husband Tom’s caregiver after his stroke, and it is slow, hard going. Rereading those pages means climbing back inside a year that was brutal in ways I am still finding language for. Tom in pain. Tom struggling. Tom’s body and brain doing things neither of us knew how to handle. Me floundering as caregiver, as partner, as human.

And yet—there is also so much joy in those pages. That’s the part that surprises me every time I sit down with them. Even in circumstances that were, objectively, pretty grim, Tom and I found delight. We named his blankets. We played wheelchair shuffleboard at Union Station and in the dining room. He made earrings out of the staples holding his skull together. We laughed until we cried. We loved each other fully and hard. We were, in the middle of the hardest year of our lives, genuinely happy.

Tom loved dogs with his whole heart. Luna and Woodrow, our two rescue pups, were constants through that year—warm bodies, uncomplicated devotion, creatures who did not care what day it was or how far the recovery had come or hadn’t. They just showed up every day, delighted to be included in the mess of our lives.

So it makes sense that one of the ways I honor Tom’s memory is by supporting Happy Doggo, a charity based in Thailand that rescues street dogs. This week their founder Niall Harbison wrote about sitting at a little table in Happy Doggo Land with a slice of homemade chicken pie, watching a dog receive physical therapy outside the window, and asking himself whether he would trade that moment for a mansion, a Ferrari, a million dollars.

Not a chance, he wrote.

I totally get that.

I have been thinking a lot lately about what it means to choose presence over comfort. Tom couldn’t give me comfort that year; he needed all the comfort available and then some, and I never had enough for him. What he gave me instead was presence—his particular, irreplaceable, hilarious, infuriating, loving presence. And I gave him mine. We learned to hold space for each other, let the other person speak even when we disagreed or were confused or wanted to add a detail they had left out. It took his stroke for us to learn how to do that. The dogs already knew how to do it—at least the deep listening part, which is the most important part.

Niall writes that he takes his inspiration from dogs rather than humans, and I understand that completely. Dogs don’t hedge. They don’t perform. They don’t save their devotion for when conditions are better. They are all in, right now, with whatever is in front of them. Niall writes about a four-month-old puppy found on a building site, badly hurt and terrified of humans, latching onto another sick dog at Happy Doggo Land. The other dog, despite being seriously ill himself, let her. He didn’t need to wait for the right moment or make a grand gesture. He just gave her his full presence, offered without reservation. It was what she needed to feel safe.

In the last year of Tom’s life, we learned how to do that for each other.

I wouldn’t trade that year for anything. Not for ease, not for comfort, not for a version of our life that didn’t include the wheelchair shuffleboard and the blankets with names and the skull staple earrings. It was the hardest year of my life. It was also the year I loved Tom most completely, and the year he loved me back the same way. The dogs already knew that was possible. It just took us humans a little longer to figure it out.

I find myself constantly grateful to the dogs for teaching me how to be in this world.

If you want to support Happy Doggo’s work rescuing street dogs in Thailand, you can find them here.

Subscribe now

If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

PS: My self-paced Journaling for Grief course is now available. It includes six lessons—audio recordings, written reflections, and journaling prompts—that you can move through at whatever pace feels right. Grief doesn’t follow a schedule, and neither does this course. You can find it here.

Hello, friend.

The day my husband Tom died will always be the day after my birthday. For the rest of my life, that will be true. For the rest of my life, my birthday will be the anniversary of the day I sat in a hospital room with Tom’s brother and we made the decision to take him off life support.

I remember his brother bringing me birthday cake in the hospital after we made that decision.

That was the hardest thing I have ever had to do. It was also the most loving thing I have ever gotten to do. I knew Tom was ready to die. I was not ready for him to die, but I knew without a shadow of a doubt what he would want me to do. His brother knew too. I was lucky to have that clarity. I was lucky to have someone beside me, echoing my own thoughts back to me, making it possible to do what needed to be done.

People sometimes ask me whether I’ve moved on. I haven’t. I won’t. Moving on implies leaving something behind, and I have no intention of leaving Tom behind. What I am doing, five years in, is moving forward. I don’t miss him one bit less than I did in the first moments after he died. What has changed is my capacity to carry that grief alongside living my life. Having a dead husband is part of my life now. It is woven into everything I do—this newsletter, my memoir-in-progress, the way I’ve learned to ask for help, the boundaries I’ve built with my father, all of it. Tom is not in my past. He’s indelibly woven into my present.

What I didn’t know in that hospital room five years ago was how much I was about to learn about myself. Not all at once—grief doesn’t work that way, and neither does growth. It comes in layers, over years, often when you’re not looking for it.

I learned that I can survive the hardest things life can throw at me and survive with some gentleness intact. I learned that I have people around me who show up. I learned that I have more in common with other humans than I ever thought possible. I learned that I deserve love and care and affection. That last one took the longest.

My father’s voice was in my head for most of the year that I was Tom’s caregiver, the year between his massive stroke and his death. Eight years before Tom’s stroke, I had ended my relationship with my father, but his voice was still in my head. The voice that told me I wasn’t just a disappointment but an embarrassment. That I didn’t deserve love. I heard it clearly, but I began to suspect he was wrong. After Tom died, I found out for certain. By the time I was ready to be in relationship with my father again, he couldn’t hurt me the way he once had because I knew the things he’d said about me weren’t true.

I had about a year with my father before he was diagnosed with Alzheimer’s. I don’t think he remembers saying those things. It doesn’t matter. I know they weren’t true. The year of being Tom’s caregiver and then surviving his death taught me much more about myself than my father’s words ever could.

This past weekend I observed Father’s Day with my father. My relationship with my father has been complicated my entire life, and right now it is the best it has been in decades. I have slowly learned what I can control and what I cannot, and I have stopped trying to control what I can’t. The boundaries I’ve built with him over the last few years have given me back something I didn’t expect: the ability to be present with him.

I’ve also been slowly revising my memoir—the book about the year I was Tom’s caregiver. I keep thinking I can revise a chapter a week. I can revise a chapter in a week. What I keep forgetting is that I need two weeks to recover afterward, so the real unit is three weeks per chapter. I have 29 drafted. I’ve done a first pass at revising seven.

Revising those early chapters allowed me to see how much I’ve grown. I never wanted to be a caregiver. I never wanted to be a widow. Both of those things happened anyway, and somewhere inside them I became someone who knows what she is made of. Someone who has learned—slowly, painfully, with a lot of failed attempts—how to let people help her. How to accept generosity without immediately deflecting it.

Five years. Tom would have found something dryly funny to say about all this or he would have sung me a song about it in the style of Kurt Cobain, my favorite musician. Either way, he would have made me feel fully seen and roundly mocked at the same time. It was a particular skill of his I miss like crazy.

That’s grief at five years, for me. I’ve learned some valuable lessons. I have a dead husband that I am still and will always be madly in love with. It’s complicated and I’m grateful for it.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

PS: I'm hosting a Read + Reflect session this Thursday, June 25th, 4–6 PM MT via Zoom. It's a quarterly body-doubling session where we read back through what we've written in our journals and harvest the insights together. Even if you haven't journaled nearly as much as you wish, this will be useful for you! Pay-what-you-can pricing. Register here.

Hello, friend.

I have always thought of myself as a generous person. I give time, attention, help, things. I do volunteer work. I pay the bill. I donate.

What I’m only now understanding, after years of half-getting it, is that I’ve been practicing half of generosity.

I wrote about this back in 2022, but without understanding that I was writing about generosity. That piece was about understanding what people get out of helping you—that it’s not a one-way transaction, that the helper gets something too. I thought I’d figured it out then. I’ve been working on the gap between getting it intellectually and putting it into practice automatically for years now. I’m still working on it.

A few weeks ago I traveled with my sister and teenage nephew. I use a cane, and my left hand doesn’t always cooperate. By now I’ve gotten pretty comfortable with certain kinds of help. I use a wheelchair in airports, and I genuinely love it. Having an airline employee push me from the entrance through security and all the way to the gate, then meet me again when I land and zip me to my rideshare is wonderful. I let my nephew carry my luggage, and I’ll even ask him to without much hesitation. I’d gotten used to thinking of myself as someone who’d made real progress at letting people help me.

This trip showed me there was a whole other category of generosity for me to practice.

At the airport, my sister had to get me drinks and snacks because I couldn’t carry them and manage my cane at the same time. She rearranged my wheelchair more than once so I could put my feet up when my legs got uncomfortable. She took me to the bathroom. At the hotel, every time I wanted food from the buffet, one of them had to come with me because I can’t hold a plate and a cane at the same time, and someone had to carry my food back to the table for me.

This was a different kind of help than the kind I’d gotten used to. The wheelchair-and-luggage help had started to feel almost normal, routine, even comfortable. The help I needed was something else. This was help with eating, with the bathroom, with the most basic logistics of being a person in a body. And I noticed it took real effort on my part to be gracious about it—more effort than the airport wheelchair ever had.

At some point during the trip, I noticed I had a choice about what to do with that help. I could spend my energy resisting it, insisting I was fine, performing not-needing what I obviously needed, marinating in that low hum of guilt and embarrassment that comes from needing this much. Or I could spend that same energy being grateful.

It was an easy choice once I saw it clearly. Grateful was better, for me and for them.

And I was finally able to see that accepting the help gratefully was me being generous.

I keep coming back to a framing I first encountered in Sharon Lukert’s When My Memory Fails Me, and which came up again in my Buddhism class a week or so ago: that generosity is not only what you give but what you allow yourself to receive.

I have spent a lot of my life trying not to “put anyone out.” I have declined help, refused offers, insisted on doing things myself, pushed back on kindness—all in the name of being low-maintenance, of not being a burden, of being the kind of person who gives rather than takes. And a lot of it comes from my identity as an independent person.

What I see now is that this has often been its own form of selfishness, though not the obvious kind. When someone offers me help and I argue with them about whether I need it, I am prioritizing my own discomfort with being seen as needing something over their desire to give. I’m spending energy arguing about the thing when I could spend that energy accepting the thing and letting both of us feel good.

When someone offers, they’re telling me they want to help. They’re telling me they won’t feel put out. They’re inviting me into a moment of connection and care. When I refuse, I’m effectively saying: I don’t believe you. I know better than you whether you want to do this. And I’m going to decline on your behalf.

That is not generous. That is controlling, dressed up as consideration.

And that realization has been key for me, because as much as I identify as being an independent person I also do not identify as being a controlling person.

David Younger wrote something a few weeks ago about how lovely it was to accept help from friends, the particular pleasure of letting people take care of you. I recognized the experience immediately. Something opens up when you stop fighting the help and just receive it. The person helping feels useful. You feel cared for. The moment becomes connection instead of negotiation.

My sister and nephew were better at this than I was, especially with the harder stuff—the buffet, the bathroom, the wheelchair adjustments. They didn’t make a production of it; they just helped, easily, the way you help someone you love without keeping score. My job was to let them, even when “letting them” meant something much more intimate than handing off a suitcase. And when I stopped tracking what it cost them and just accepted what they were giving, the trip was more enjoyable, I was less tired, and something in our relationship relaxed into a new ease.

For me, at least, accepting help graciously must be an ongoing practice. Some mornings I actually set an intention for the day around this: today, practice accepting help. It sounds small, almost silly, to need to remind myself of something so basic, but I do.

I take Lyft and Uber a lot. Often, when drivers see me walking toward the car with my cane, they jump out to help—with the door, with my purse, with getting in. For a long time I waved them off automatically.

Now I often accept. And sometimes I wave someone off, and then immediately say, “Oh wait, no, I do need help.” Out loud, mid-decline.

I think that’s kind of great. It proves you can catch yourself making the old, automatic choice, and just . . . not finish making it. You can rescind a bad decision in real time and make a different one. You don’t have to wait until you’re better at this to start doing it differently.

The Buddhist framing of generosity goes both directions. Giving and receiving are both acts of generosity, and both ask something of us: the giver has to offer without attachment to outcome, the receiver has to accept without shame.

That second part is the one I’m still working on. One Lyft driver, one buffet plate, one “oh wait, actually, yes” at a time.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

PS: I'm hosting a Read + Reflect session next Thursday, June 25th, 4–6 PM MT via Zoom. It's a quarterly body-doubling session where we read back through what we've written in our journals and harvest the insights together. Even if you haven't journaled nearly as much as you wish, this will be useful for you! Pay-what-you-can pricing, free for MSU Denver email holders. Register here.

Hello, friend.

If you’ve ever been a caregiver, you know the feeling of being off-duty but never quite off. There’s always part of your brain that’s tracking, always waiting for the next thing. You’re eating dinner, at a movie, getting ready for bed, spending time with friends or family, but some portion of your attention is somewhere else.

In Bridgette Hamstead’s AuDHD Guide to Caregiving, she writes that caregiving requires a constant background monitoring—an anticipatory vigilance about what might go wrong — that doesn’t turn off when you’re not actively engaged in care. It occupies a portion of your brain the way a browser tab runs in the background, using resources even when you’re not looking at it.

That’s it. That’s exactly it.

I’ve been caring for my father, who has Alzheimer’s, for several years. He lives in assisted living but still has plenty of needs for my sister and me. She does the bulk of the work; I fill in where I can, which since my own brain surgery has been less than I’d like. But even when I’m not actively doing anything, some part of my brain is on. Tracking, anticipating, waiting for the next thing.

Last week the next thing arrived at 9 PM on a weeknight, just as I was getting ready for bed.

My father’s name came up on my phone. He almost never calls me—he usually calls my sister, who is more reliably reachable. I figured if he was calling me, he had already tried her. He was a little desperate.

He’d had an altercation with one of the caregivers at his assisted living facility. I don’t know exactly what happened. What I know is that my father was frightened. He knew the caregivers had master keys, so locking his door didn’t seem like it would keep him safe. He was afraid to go to sleep.

I spent the next hour making calls. Overnight staffing at the assisted living facility is sparse; it’s hard to reach anyone who can actually do anything. I left messages and then called my father back. We brainstormed ways he could feel safer. I told him I would keep trying.

I slept badly. At a little after 1 AM he called again, just to check in.

In the morning I reached someone who could help. They reassigned the caregiver to a different floor of the building so my father wouldn’t have to interact with him and opened an investigation. A couple of days later my father seemed to feel the situation was resolved, though he was still rattled.

When I first became Tom’s caregiver after his stroke, I was constantly convinced I was doing it wrong. I could point to other caregivers who were doing things differently, more patiently, more efficiently, more gracefully, with better systems or more help or some quality I couldn’t quite name. I thought caregiving was a thing you did, and either you did it right or you didn’t.

What I understand now is that caregiving is not monolithic. It looks different for every caregiver and every person being cared for, shaped by the relationship, the illness, the resources available, the personalities involved, the particular way this family works or doesn’t work. There is no standard version. There is only yours.

This is what Hamstead means by the randomness of caregiving. You can have a plan. You can divide responsibilities with a sibling. You can set up systems and routines. And then your father calls at 9 PM frightened of a caregiver with a master key, and the plan doesn’t matter anymore because this is happening right now.

The difficulty isn’t only the event itself. It’s that the event lands on top of everything else. The Situation with my father happened while I was recovering from brain surgery, trying to wrap up some writing center work, trying to write, trying to maintain the friendships and routines that make a life feel like a life.

Caregiving doesn’t wait for a convenient time. It arrives when it arrives, and it asks for what it asks for, and you do what you can.

What Hamstead’s framework helps me understand is that this isn’t a failure of planning or a failure of stamina. It’s the nature of the thing. Caregiving for someone with Alzheimer’s means the unpredictability is structural. It’s built into the disease, into the care system, into the reality of what it means to be responsible for another person’s wellbeing when that person can’t always tell you reliably what’s happening.

The background tab never closes.

What I’ve learned is that this is true and it’s okay that it’s true. Some of what I’m carrying is not going to be put down until the situation changes. And the situation will change, eventually, in the way that dementia situations eventually change, which is its own thing to sit with.

For now: I answer the phone when he calls. I leave messages. I sleep badly some nights. I show up most weekends for a visit.

Sometimes I show up with grace. I sit with him without an agenda, I listen to the story about the mysterious beverage stain on the floor for the fourth time, I leave feeling like I gave him something real. Those days are good.

More often, I show up and do what I can with what I have. I tell him I’m sorry it’s hard. I get an employee reassigned to a different floor and hope that holds. It’s a Band-Aid, and I know it’s a Band-Aid, and I put it on anyway because a Band-Aid is what’s available at the moment.

The Band-Aid scenario is more common than the grace scenario. I’ve made my peace with that, mostly. Caregiving is not a performance you either nail or don’t. It’s a practice, ongoing, imperfect, sometimes adequate and sometimes not, and you keep showing up because the person you’re caring for needs someone to show up, and today that someone is you.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

PS: If this resonated and you've been thinking about journaling as a way to process what you're carrying, I'm teaching a FREE two-hour Introduction to Therapeutic Journaling class this Thursday, June 11th, from 4–6 PM Mountain Time via Zoom. No experience required—just bring your willingness to show up for yourself. Register here.

Hello, friend.

My father is convinced his Alzheimer’s diagnosis was a mistake.

He has a clear memory of a doctor at the DMV telling him exactly that—that the diagnosis was wrong, that it had been entered into his records in error, and that unfortunately, once something is on your medical record, it can’t be removed. He tells this story with confidence and detail. He’s frustrated, but also a little resigned; he knows what happened, even if the system won’t correct it. Oh, and he swears my sister was there.

My father has not driven in over a year. I took his keys and car away, a necessary and painful conversation that he doesn’t remember having. He has not been to the DMV. He could not have been to the DMV. The remembered Incident is physically impossible. And yet it is as vivid and certain to him as anything else he believes he knows.

My sister and know this memory is a dream or something his mind constructed to make sense of a situation that doesn’t make sense to him. There are brain scans. There are medical records detailing two years’ worth of doctors treating him for Alzheimer’s. There is the intake evaluation that carefully placed him in assisted living rather than independent living at his facility, a distinction he disputes constantly and passionately. There is the evidence my sister and I have accumulated over years of watching his memory erode—the repeated stories, the confusion, the moments when he tells us, once again, that somebody has been eating his snacks or moving his things or leaving dirty laundry around his home or wearing his clothes.

He doesn’t remember the diagnosis. Or the intake evaluation. Or agreeing to assisted living, which he did, when he still could. What he remembers is the doctor at the DMV, who told him it was all a mistake.

The friends are the hardest part.

Across the parking lot from his building is the independent living facility, where his friends live. The events over there are more interesting to him—more stimulating, more social, more like the life he imagined he’d be living as he nears 90. He can visit whenever he wants, which he does, and even eat meals there with his friends. But he lives in the assisted living building, and he doesn’t understand why, and every time the subject comes up he is freshly angry about it.

“Everyone agrees there’s nothing wrong with me,” he says.

When he says everyone, he means the people in his immediate circle—the friends who enjoy his company, the staff who are kind to him, the people who don’t have access to his medical records or weren’t present at his evaluation. He doesn’t mean his doctors, the intake team, or my sister and me.

I understand the distinction he’s making, even if he doesn’t know he’s making it. The people who see him day to day see someone who is funny and charming and engaged. The cognitive losses are not always visible in casual conversation. He’s good at making people feel comfortable and his recall of historical facts is impressive. Someone who knows him only socially could understandably think independent living would be a good fit for him.

I do not agree that independent living would be a good fit for him and I have told him that, but I doubt he remembers. I understand why he finds the situation frustrating.

What I can do is sit with him in his frustration. I can acknowledge that it’s genuinely hard to feel like you’ve been placed somewhere against your will. I can tell him, truthfully, that his friends are right there, that he can go see them whenever he wants, that nothing is stopping him from spending time in the other building. I can tell him I’m sorry it’s frustrating.

I am sorry. His frustration is real even if its basis isn’t. He is experiencing something that feels like injustice, and the fact that the injustice exists only in his reconstructed memory doesn’t make the feeling of it any less vivid for him.

My Buddhist practice has helped me sit with this situation.

It asks me to meet him where he is. Not where I wish he were, not where he used to be, but where he actually is—in a world where a doctor at the DMV told him the Alzheimer’s diagnosis was a mistake, where his friends are inexplicably in a different building, where the people who love him keep saying things he knows aren’t true.

I can’t fix any of that. I can’t give him back his memory or his independence or his sense of himself as someone with nothing wrong with him.

What I can do is show up. And try to bring as little of my own agenda into the room as possible. I tell him I’m sorry it’s hard. I practice loving-kindness meditation to wish him happiness, health, safety, and ease.

It isn’t enough, and yet, it’s all there is.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

PS: If this resonated with you, I’m developing self-paced courses on Journaling for Grief, Journaling for Chronic Illness and Disability, and Journaling for Caregivers — designed so you can move through the material on your own timeline, when you’re ready. They’re not available yet, but you can join the waitlist to be notified when they are: Notify me when they’re ready.

Hello, friend.

Last week in my Buddhism class we talked about compassion fatigue and caregiver burnout, and something clicked into place for me that I’ve been circling for months.

So much of Buddhist practice gets popularized as being about turning outward — taking on the suffering of others, offering calm in the face of pain, being a steady presence for people who are struggling. Tonglen practice, the practice of breathing in suffering and breathing out relief, gets described in terms of what you can give. Lovingkindness meditation gets taught as something you direct toward others. The image of the bodhisattva, the enlightened being who stays in the world to help other beings, gets held up as the ideal.

And all of that is real. But there is a part that gets left out of the popular version, and my teacher brought it front and center.

Pema Chödrön and other significant Buddhist thinkers have consistently emphasized something that tends to get minimized in how these teachings are packaged for Western audiences: you cannot sustainably reduce the suffering of others if you are not also taking care of yourself. The self-care piece is not a Western addition or a soft concession to our limitations. It is in the original teachings. You fill your own well so that you have something to offer. You tend to your own suffering so that you can be genuinely present for someone else’s, rather than performing presence while quietly depleting.

I have been revising my memoir the last few weeks, and I have been living inside the year I spent as my husband Tom’s caregiver. Reading back through my own notes and drafts from that time, I am seeing things I could not see while I was inside it.

I was exhausted. Not just tired, but exhausted in a way that had seeped into my bones. I can see it in how I wrote about things, in the shortness of my sentences when I was overwhelmed, in the things I didn’t write about at all because I didn’t have the words or the energy. I was depleted in a way I didn’t have language for, because I had not given myself permission to be depleted.

Here is what I believed at the time, without exactly putting it into words: I had to do everything. I had to be Tom’s best caregiver—attentive, patient, resourceful, never burned out, never resentful. I had to be an excellent teacher for my students, who deserved my full attention and creative energy. I had to be present for my daughter, who was watching her stepfather struggle and her mother disappear into the effort of keeping everything together, and being a teenage girl during the COVID pandemic. I had to be there for Tom’s mother and brother, for everyone who reached out, everyone who needed something, everyone who was counting on me.

The list was endless because I made it endless. Because that is what I believed being a good person looked like.

And when I couldn’t do it all—when I snapped at someone or stared at the wall for twenty minutes instead of doing the next thing on the list—I didn’t just feel tired. I felt ashamed. Like I had failed at something I was supposed to be good at. Like if anyone knew I had taken a break, had sat with my own need instead of someone else’s, they would see that I was not who I was pretending to be.

I kept it secret—the naps, the moments of paralysis. I hid them from Tom, from my daughter, from myself. I performed wellness and capacity until the performance became its own exhaustion layered on top of the original one.

I would have been a better caregiver if I had taken better care of myself.

I know this now with a clarity that I simply did not have then. I can see the math of it clearly: I was giving from a place of emptiness rather than fullness, and when you give from emptiness the giving costs more and delivers less. The patience runs out faster. The presence is thinner. The love is still there but love without rest behind it becomes frayed at the edges in ways that the people around you can feel even when they can’t name it.

I don’t say any of this with guilt. I have done enough work to be mostly past the guilt, and the Buddhist practice helps. Tom knew I loved him. He knew I was doing my best. And I was doing my absolute best with what I had and what I knew. The problem was that what I had kept being depleted and I didn’t know how to replenish it, partly because I didn’t believe I was allowed to.

The Buddhist framing has helped me understand it differently. When Pema Chödrön and other teachers talk about caring for yourself as a prerequisite for caring for others, they’re talking about sustainability. A caregiving relationship that burns out doesn’t just hurt the caregiver—it ultimately fails the person being cared for too, because the well runs dry and there is nothing left to draw from.

Caregiver burnout is real. It is not a sign of weakness or insufficient love. It is the predictable outcome of giving without replenishing, of treating self-care as optional rather than as structural.

I am no longer anyone’s caregiver in the immediate, daily sense, though I care for my father and my daughter and the people I love in all the ways that love requires. And I am still very much recovering from my own surgery, navigating my own disabilities, learning my own body’s new rules.

And I am trying, imperfectly and slowly, to do it differently.

To rest without performing the resting. To ask for help without immediately apologizing for needing it. To tend to my own suffering—the pain in my hand, the morning fog, the grief that sits quietly in the room with me while I work—without treating it as evidence of failure.

Buddhist practice is asking me to take care of myself not as a reward for taking care of others, but as a prerequisite for it. Not as something I earn by doing enough, but as something I deserve simply by being human.

I am still learning this. The shame of need, the guilt of rest are old patterns, and old patterns don’t dissolve quickly. But I am practicing. And like all practice, it gets easier over time, and becomes less like effort and more like just how I do things.

Like putting the laundry detergent on the floor so I don’t have to use my left hand.

A workaround that becomes normal. A new way of moving through the world.

If you are a caregiver, I want to say something directly to you.

What you are doing is extraordinary. And it is costing you something, whether you are letting yourself feel that cost or not. The question is not whether to rest. The question is whether you will rest with permission or without it, whether you will tend to yourself openly or in hiding, with shame or without it.

You are not a better caregiver for refusing to rest. You are a more depleted one. And the person you are caring for deserves the version of you that has been tended to, even a little, even imperfectly.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

PS: If this resonated with you, I’m developing self-paced courses on Journaling for Grief, Journaling for Chronic Illness and Disability, and Journaling for Caregivers — designed so you can move through the material on your own timeline, when you’re ready. They’re not available yet, but you can join the waitlist to be notified when they are: Notify me when they’re ready.

Hello, friend.

It will be a year in June since my surgery to remove Buttercup, the mass that had been pressing on my brainstem.

A year ago, I thought it was genuinely possible that I would die, before surgery or during it. Buttercup was in a complicated place, the surgery was high-risk, and I had made my peace with the possibility. I made final I-love-you videos for loved ones. I said what needed to be said. And then I went into surgery, and I woke up, and I was still here.

That fact has not stopped being a thrill.

The year that followed was not what I expected, though I’m not sure what I expected. I think I had some vague idea that recovery would be a series of upward steps, hard but visible. What it actually looked like was that progress appeared and then seemed to reverse, and then appeared again somewhere else. My left hand, my balance, my vision, my stamina, my ability to think clearly—all of it fluctuating, all of it paint-drying slow, all of it asking me to hold the timeline loosely.

The dramatic stuff has quieted down. I don’t fall the way I did in the early months. Walking doesn’t feel dangerous anymore. I shower by myself regularly without it feeling like an accomplishment. But recovery continues, with weekly PT, weekly OT, my body and brain still in active negotiation about what is possible.

And lately, I’ve had a couple victories.

Some of my neighbors traveled for a month. When they came back, they said they could see a real difference in how I was walking. My stability and balance had shifted in ways I hadn’t been able to see from the inside, living it every day. That’s the thing about incremental progress—you can’t always perceive it in yourself. Sometimes you need someone who hasn’t been watching to tell you what they see.

The other victory: jeans.

I wore a pair of pre-surgery jeans out of the house recently, for the first time since my surgery. Not just putting them on, because pulling up the stiff fabric with just one hand and getting it over my ample butt takes patience and creativity I’ve had to develop. But doing the button! And then, critically, undoing and redoing it when needed. I had learned the hard way, some months back, not to overlook that second part. We will not revisit that story. The point is I didn’t overlook it, everything went fine, and I felt unreasonably pleased with myself for the rest of the day.

Then there’s the progress I can’t see at all — because it’s become normal.

The incident sign by the stairs now reads 131 days since last incident. I remember when I wondered if it would ever get past 10. Then past 20. And here I am, well over 100.

A lot of things that used to take serious effort now just take medium effort. Part of that is my hand working better. But part of it is something subtler: I’ve gotten so used to doing things with one reliable hand that my workarounds have become invisible to me. I don’t even recognize them as workarounds anymore. They’re just how I do things.

Like laundry. When I first started doing it by myself, measuring detergent was a genuine challenge. I had to hold the container with my left arm, which doesn’t work reliably, and scoop with my right. Eventually I figured out that if I set the container on the floor, it stabilized itself, and I could scoop without needing my left hand at all. I do that automatically now. It doesn’t feel like a workaround. That’s just how I do laundry.

This is a kind of progress that doesn’t announce itself. It just quietly becomes your life.

The clearest picture of where I am right now: the farmers market.

I went this past weekend for the first time since my surgery. I knew it would be a lot. Crowds, dogs, children, strollers, stalls with produce and honey and pastries, live music, bright sun. Each of those things takes a slice of my attention. Walking in bright sun is already multitasking for me. Add navigation, the cane, other people moving unpredictably in every direction, sounds coming from multiple places at once—it adds up fast.

I went anyway.

It was a lot. I probably missed stalls I would have wanted to linger at if I hadn’t been so bamboozled by everything else happening at once. My multitasking is better than it was, but better than it was still means pretty bad by the standards of a year ago.

I stayed upright the whole time. I made a few purchases. I did not crash into anyone. I didn’t lose my cane. I had a pleasant time.

That’s pretty great.

Here is what the year of recovery has taught me, or is still teaching me.

Some of these things I already knew intellectually, in the way you can say something true and have it sound right without it having reached your bones. I knew recovery wasn’t linear because I had watched Tom go through it after his stroke. But living it myself moved it from something I could articulate to something I feel. That is a different kind of knowing.

The body has its own timeline and it does not care about yours. Progress is not always visible from the inside. You cannot fully prepare for something this big, no matter how much you think you can. And needing people is not weakness, it’s just the truth of being human, and I spent a long time pretending otherwise.

I am not going back to who I was before. I am going forward into a version of myself that includes this surgery, this year, these particular lessons. That version is still being built.

Buttercup is gone. My brain is rebuilding around the space where she was. My left hand is learning things it forgot. My balance is steadier than it was a month ago, and a month before that, and a month before that.

I’m still here.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

P.S. Based on feedback I’ve been getting, I’m rethinking the journaling courses I offer to be self-paced so people can fit them into their actual lives. I’m in the early stages of building these out and I would love your input. What topics would be most useful to you? What format works best for your life? What would make you actually show up for yourself and do the work? Please reply to this email or leave a comment. Your feedback will shape what I build. Thank you!

Hello, friend.

There’s a version of kindness I’ve been working to unlearn.

It’s the kind that softens a decision until it’s unrecognizable. That hedges and qualifies and apologizes until the person on the receiving end isn’t sure what actually happened. It prioritizes the other person’s comfort in the moment over their ability to understand where things stand. It feels like kindness because it avoids conflict. I’ve learned the hard way that it isn’t. It’s just a way of making hard things harder by making them murkier.

I discuss an example that happened in the workplace below, but I mean everywhere. In friendships, in family, in any relationship where you’ve ever said “it’s fine” when it wasn’t. Where you’ve softened a hard truth into something unrecognizable to avoid the discomfort of saying it clearly. Where you’ve left a door open that you knew was closed, because closing it felt unkind.

I used to think being direct and being kind were in tension. I don’t believe that anymore.

Here’s what I’ve learned about accountability in the last year.

When you have a chronic condition, you have to negotiate constantly. With your body, with your schedule, with your expectations of yourself, with the world. I’ve learned that accommodations are not favors—they’re adjustments that make it possible for me to do what I’m capable of doing. I’ve also learned that accommodations don’t eliminate accountability. They change its shape. I still have things I need to do. I still have commitments. I still have to show up, in whatever way I can, and be honest when I can’t. I have to attend the meeting, I have to get the work done. I just may get to do it in a way that looks a little different from how others get to do it. They may attend the meeting in person, and I’m attending online, or they may have to get the work done by Friday, and I may have until Monday.

The same is true for the people I work with. I want to be an employer who takes disability and chronic illness seriously, who understands that bad weeks happen, that bodies are unpredictable, that some things take longer when you’re managing pain or fatigue or any of the other invisible weights people carry. I try to build that understanding into how I lead.

And I also need to hold people accountable. Both things are true.

The mistake, I think, is assuming that one cancels the other out. That if you understand why something is hard, you’re obligated to accept whatever outcome follows. That compassion means letting things slide. I don’t believe that anymore either.

Recently I made a decision that a long-term employee disagreed with. I knew they disagreed. I understood their perspective—I had listened to it, taken it seriously, weighed it against everything else I was considering. The decision I made wasn’t the one they wanted, and I knew it was going to cause them some distress.

I wanted to say that clearly, not imply that I might reconsider or that things were more uncertain than they were. I wanted them to know that their perspective had been heard and that it had mattered—and that I was going to stand by my decision anyway.

That’s uncomfortable to do. I felt a pull toward cushioning, toward endless caveats, toward framing the decision in a way that might leave the door open even when the door was closed. I’ve done that before—for years. It didn’t actually help anyone. It just delayed the moment of clarity and added confusion to an already hard situation.

What I tried to do this time instead was be direct. To say I hear you, I understand this isn’t what you wanted, I’ve thought about it carefully, and this is where I’ve landed. No apology for having made a decision. No suggestion that their distress would change the outcome.

I’ve been sitting with a phrase from a piece by Patricia Sears, a Substacker who works in end-of-life planning. She writes about why she refuses to soften her language around death and dying — to reach for euphemisms or cushioned phrasing when directness would serve people better. She calls the alternative “avoidance dressed up as kindness.” She’s writing specifically about end-of-life conversations, but the phrase stopped me because I think it applies much more broadly. You can read her piece here.

When we soften our decisions into mush, or imply that nothing is final when it is, or absorb someone else’s reaction as evidence that we’ve done something wrong, we’re not being kind. We’re being unclear. And unclear, in the long run, is unkind. That’s avoidance dressed up as kindness. Sears named it in one context; I keep finding it everywhere.

I don’t think accountability requires harshness. I’ve watched people confuse the two my whole career—the manager who thinks directness means coldness, the supervisor who delivers hard news as if the delivery itself proves their toughness. I’ve been confused about it myself. For a long time I believed that hurting someone’s feelings could be avoided with the right language, the right softening, the right number of qualifications. I kept trying to find the version of the truth that nobody would mind. There isn’t one.

What I’m describing is something simpler and harder: being honest about where things stand. Making sure the other person understands what happened and why. Not apologizing for decisions that were made thoughtfully and in good faith. And trusting the other person enough to give them the truth rather than a managed version of it.

This doesn’t only show up at work. I have a friend who regularly nudges at the edges of what I’ve said. I tell her I’m available at 2:00 and she asks if she can see me at 1:45. I tell her I’m not up for a phone call and she says, well, let’s just make it a short one. For a long time I would accommodate these adjustments, telling myself it was no big deal, that being flexible is part of caring for someone. What I’ve come to understand is that accommodating them was actually a way of avoiding the discomfort of holding my own line. The clear answer was already in my first response. She just kept asking until I found a softer one. I’m learning to let the first answer stand—because being clear with her is a form of respect for both of us.

Here’s the thing I most needed to hear, and that I want to offer to you: you are not responsible for managing other people’s reactions to the truth. You are responsible for delivering it with care. Those are different things, and collapsing them is where “avoidance dressed up as kindness” lives.

That’s the kindness I’m working toward. Not the kind that softens everything into nothing. The kind that respects people enough to be clear with them, even when clarity is uncomfortable.

Progress, not perfection. I don’t always get it right. But I’m getting better.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

P.S. If this resonated with you, my email course Setting Boundaries Without Guilt might be exactly what you need next. It’s a 14-day self-paced course you can start any time, designed to help you hold your line without apologizing for it. $47 (20% off for paid subscribers). Start here.

Hello, friend.

We’ve been practicing loving -kindness meditation in my Buddhism class— also called metta meditation. The basic structure goes like this:

You begin with yourself. You wish yourself happiness, health, safety, and ease. Then you bring to mind a benefactor—a parent, a mentor, someone who has supported you—and you wish them the same. Then someone you love deeply; for me, it’s often my daughter. Then someone neutral, someone you barely know; maybe the barista who makes your coffee, the neighbor you recognize by sight but have never spoken to. You wish them happiness, health, safety, and ease.

And then things get hard.

You bring to mind someone who irritates you. A difficult colleague. A public individual whose mannerisms rub you the wrong way. You wish them happiness, health, safety, and ease. You try to mean it. You may or may not succeed. You try anyway.

And if you’re ready for the advanced move, you bring to mind someone you actively dislike. For me, that’s nearly always a politician. You wish them happiness, health, safety, and ease.

In last week’s class, my teacher brought in a teaching from Pema Chödrön that shifted something in me.

After moving through all of those people — yourself, your benefactor, your beloved, the stranger, the irritating one, and the one you dislike if you are doing the advanced move—you imagine them all together. All of you, in the same space. And you make one small grammatical change: instead of wishing each of them well separately, you shift from you to we.

May we have happiness. May we have health. May we have safety. May we live with ease.

That’s it. One word. And it undoes something.

I’ve been thinking about interdependence a lot lately. Not as a philosophical concept but as a lived reality that my body keeps insisting on.

Since my brain surgery, I need help with things I used to do without thinking. I need someone to carry things when my hand is holding my cane. I need Lyft drivers who offer a steadying hand getting in and out of the car. I need neighbors who know what to do when there’s a freeze and I’ve already turned the outside water back on. I need people to get the door.

My first instinct, always, is to say I can do it. And often, technically, I can. But I’ve been learning, slowly, imperfectly, to say yes instead. To let people help me.

Sharon Lukert, in her memoir Until My Memory Fails Me, writes about this as a form of generosity. She’s a retired Buddhist chaplain navigating mild cognitive impairment, and she accepts her husband’s help with a grace I find genuinely inspiring. She frames it not as dependence or defeat but as a gift, to herself, and to him. Letting someone help you gives them something. It lets them feel useful, connected, present. Refusing help, she implies, is a kind of withholding.

I’ve been sitting with that. It’s changed how I think about the days when I have to ask.

The Pema Chödrön teaching takes it further.

The shift from you to we isn’t just grammatical. It dissolves the boundary between the self who is wishing and the others being wished for. Suddenly I am not separate from my benefactor, my beloved, the stranger at the coffee shop, the colleague who drives me up the wall, the politician who makes my skin crawl. We are all in this together, wishing for the same things: to be happy, to be well, to be safe, to move through our days with some measure of ease.

Wow.

I think about what it means to need help and to receive it—to be the one whose cane-holding hand can’t also carry the bag, to be the one who has to ask. In those moments I am not separate from everyone else who has ever needed something they couldn’t provide for themselves. Which is all of us, at some point, in some way. In other words, everyone.

May we have happiness. May we have health. May we have safety. May we live with ease.

The we includes me. It includes you. It includes the person who irritates me and the one I love most and the neighbor I’ve never spoken to and the barista who hands me my coffee without knowing anything about my life, and the politician who erases me with everything they say.

We are all just trying to get through. We all want the same things at the bottom of it.

I find that, on the days I can really feel it, extraordinarily comforting.

The pronoun we reminds me that we are all in this together. Life is hard for all of us. Just as I suffer, you suffer, others suffer. I can relate to it. I know that pain. The pain I feel from losing my husband Tom isn’t exactly the same as the pain his mother feels or his brother feels or his son feels, but it isn’t so different either.

I still struggle mightily wishing well for the politician. I remember that they started out as a child, vulnerable and helpless. Something happened to them at some point that I don’t understand that turned them into whoever they are now.

I remind myself, I’m going for progress, not perfection.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

P.S. If this resonated with you and you're carrying something heavy, one of my upcoming journaling classes might be helpful for you. I offer sessions on grief, caregiving, chronic illness and disability, closure, and more, all via Zoom, all pay-what-you-can.You can read descriptions and register here.

Hello, friend.

I’ve been visiting my father once a week for most of this year.

That probably sounds unremarkable. But my father and I didn’t speak for twelve years. I was tentatively beginning to find my way back into a relationship with him when my brain surgery happened, and then I couldn’t visit for a long time after that. So these weekly visits with my sister to see him at his apartment in an assisted living facility are new-ish. And complicated. And, lately, surprisingly peaceful.

My sister has been doing the bulk of the caregiving for years. I fill in where I can, supporting her, and accepting that because of my surgery, sometimes my ability to help is severely limited. The twelve-year break from my father was my choice, and I don’t regret it one bit. I came back without illusions. What I came back to was a man in his late eighties with Alzheimer’s who has never, in my memory, shown much interest in my life, and now has even less capacity to do so.

I knew all of this going in. And yet.

Before visits, I would sometimes find myself rehearsing. Not out loud—just in my head, running through the scenarios. For example, I’d imagine him talking about himself, as he always does, and I’d fantasize about interrupting him to say, “Has it ever occurred to you that something might be going on in my life?” I never said it. But I rehearsed it many times. Which tells you something about the gap between what I told myself I expected and what I actually, quietly, wanted.

It no longer hurts that he doesn’t ask about me. It just is. I notice it the way you notice a familiar scar—not with pain, but with recognition. I’ve had brain surgery. I’m navigating significant disabilities. My husband died. I’m writing a memoir and working and deepening my Buddhist studies. Before my surgery, I was doing hospice volunteer work. And none of that registers for him. It never has. The Alzheimer’s has just made explicit what was always true. I know some people notice an extreme personality change in their loved ones with Alzheimer’s, but with my father, I think the disease is simply amplifying what was already there.

I knew this. I thought I’d made peace with it.

Then I had my psychedelic therapeutic journey. And something shifted.

The shift is hard to describe precisely, which is maybe why I’ve been sitting with it for a while before writing about it. But here’s what I notice: I no longer rehearse. Before visits now, there’s no running through of imagined confrontations, no bracing for conversations that might sting. I just go. I sit with him. He talks about himself. I listen. And I leave without the low hum of residual frustration I didn’t even know I’d been carrying.

My therapist had told me before the journey that people tend to achieve in one journey what might take three to five years of therapy. I believe it. The place I’m in with my father is a place I could have gotten to through three years of steady therapeutic work. The journey compressed that. Not by bypassing the work, but by doing a version of it at great depth in a short time.

What I’ve arrived at, I think, is something Buddhism would call less attachment to a particular outcome.

I still notice when he doesn’t ask about me. I’m not numb, and I haven’t decided it doesn’t matter. It matters. A daughter wanting her father to show interest in her life is not an unreasonable want. But the wanting is quieter now. Less urgent. Less like a wound being poked and more like a fact I’ve learned to hold without flinching.

In Buddhist practice there’s a distinction between acknowledging what is and suffering over what isn’t. My father is who he is. He has always been who he is. Alzheimer’s has not transformed him into someone incapable of curiosity—it has made it impossible for him to be someone he never was. When I walk into that room now, I’m not walking in hoping he’ll surprise me. I’m walking in to meet the person who’s actually there.

And that person is sometimes funny. Sometimes sweet. Sometimes very sad. He’s learning Spanish, and this thrills him. He doesn’t remember that he’s told me about his Spanish class three times already. I listen each time like it’s new, because for him it is.

There’s something, I realize, that I can offer him that requires nothing from him in return. I can just show up. I can be the daughter who comes on Sundays, who listens, who doesn’t need him to ask about her life in order to stay in the room with him.

I’m showing up now without the weight of wanting him to be different, and the visits are strangely easy in a way I didn’t expect.

Showing up without expectations has turned out to be a form of generosity—to myself, for not setting up my own disappointment, and to my father, for not asking him to be something he can’t be. Sharon Lukert writes about letting others help you as an act of generosity. I’m not letting my father help me. But I am letting him be exactly who he is. It turns out that’s generous too.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

P.S. If this resonated with you and you’re a caregiver, my Journaling for Caregivers workshop might be exactly what you need. It’s a two-hour Zoom session designed as a rare space just for you, not for the person you’re caring for. The next session is Thursday, August 20. Register here.

Hello, friend.

I’ve been thinking a lot lately about what it actually means to let someone help you.

This isn’t a new journey for me. I wrote about it a few years ago, sharing a story about me being an idiot with my sister-in-law. We were at her parents’ house in Illinois and I was getting ready to drive back to Denver, loading bags and boxes into my car. She offered to help. “No, I’m fine,” I said, balancing multiple bags over my shoulders and carrying a box in front of me. “At least let me get the door,” she said, moving toward it—and I actually raced her to the door to make sure I got there first, teetered dangerously as I tried not to drop everything.

“You just really pissed me off,” she said. “There is no good reason for you to not let me help you.”

She was right. There wasn’t. And that moment started something in me—a long, slow reckoning with why I was so determined to do everything alone, and what it was costing me and the people who loved me.

What I eventually came to understand is that accepting help is something you can do *for* others, not just something done for you. When you let someone help, they get to feel useful. They get to exercise a skill or an instinct that served someone. They get the quiet satisfaction of having made something easier, the sense of having been genuinely present for another person. My sister-in-law didn’t want to get the door because she thought I was incapable. She wanted to get it because she cared about me and wanted to do something with that caring.

Tom’s stroke pushed me further along this path. When he had his massive stroke in 2020 and I became his caregiver, I had no choice but to say yes to help, and I could see how relieved people were when I did. They felt helpless in the face of our situation, and being allowed to help let them feel less helpless. It let them feel like they were making a positive difference in a crappy situation. I watched people show up with food, with time, with skills I didn’t know they had. A neighbor maintained our front yard. A friend who had traveled to Iceland before wrote up a detailed itinerary when I needed a trip to look forward to. Accepting that help let me see people more fully—what they were good at, what they wanted to give.

And then Tom died. And a whole new category of help opened up that I hadn’t anticipated.

Tom was the person who knew how the house worked. He knew when to service the furnace and how to reset the circuit breaker and what to do when a pipe was at risk in a freeze. When he died, I inherited not just grief but a house full of systems I didn’t understand and had never needed to. I was suddenly a homeowner in a way I hadn’t been before, responsible for everything, knowing almost nothing, and very much alone with it.

Learning to ask for help with the house has been its own education. Neighbors who knew Tom stepped in. Friends who knew things I didn’t offered to show me. I had to learn to say yes not just when someone offered, but sometimes to actually ask—which is a harder thing entirely. Asking for help means making yourself vulnerable in a different way than simply accepting what’s offered. But I kept thinking about what my sister-in-law taught me: that there is no good reason to say no. And so I’ve been saying yes. And eventually I realized that applied to asking too. If there’s no good reason to refuse help, there’s no good reason to be too proud to seek it.

And then I had brain surgery, and I needed to learn it all over again.

My recovery has gotten to a point where I can go out in the world—to campus, to see friends, to run errands, to show up for my life. But I’m doing it with one functional hand, and it is holding a cane. Which means if I need to carry something, I need whoever is with me to carry it. Getting in and out of cars is something I often need help with; Lyft drivers who offer a steadying hand as I navigate the door have become some of my favorite people. Opening a door when you have one hand and it’s holding a cane is genuinely complicated in a way that is hard to describe until you’ve tried it. I love when someone gets there before me and holds it open. It’s such a small thing and it changes everything about that moment.

And yet. My first instinct is still sometimes to say, “Oh, I can do it.”

Often, technically, I can. It will just take longer and be more awkward and use energy I don’t have to spare. And meanwhile the person offering help has to stand there watching me struggle, waiting to see if I’ll accept. Nobody wins in that scenario.

I’ve been reading Sharon Lukert’s Until My Memory Fails Me: Mindfulness Practices for Cultivating Resilience and Self-Compassion in the Face of Cognitive Decline. Lukert is a retired Buddhist chaplain writing about her own mild cognitive impairment, likely a precursor to Alzheimer’s. Rather than panicking about her decline, she gets curious. She approaches what is happening to her with the same loving-kindness she has spent her career offering others, and she turns that inward with genuine grace. Rather than resisting her husband’s help, she accepts it in a way that allows them to be genuinely interdependent, not one person managing another, but two people navigating together.

I want to be more like that.

When I catch myself gearing up to say I can do it, I’m not just being independent. I’m spending energy on a negotiation that doesn’t need to happen. I’m making something into a thing when it doesn’t have to be a thing. And I’m depriving someone of the chance to do something kind, which, as my sister-in-law taught me all those years ago, is something people actually want to do.

If I accept the help, we both walk away with something. If I refuse it, we’ve both wasted time and energy on an argument about nothing, and I still have to deal with the door.

Every time I accept help gracefully—every time I say thank you instead of no I’m fine—I’m practicing something that matters. Not just for me. For the person who wanted to help. Lukert makes the point that allowing others to help is a form of generosity, and I’m trying to carry that with me, reframing my insistence on doing things myself as a form of withholding something from the person offering help.

I’m still learning. Lukert would probably say that's the whole point—that the learning is the practice, not a step on the way to somewhere else.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

P.S. If this resonated with you and you’re a caregiver, my Journaling for Caregivers workshop might be exactly what you need. It’s a two-hour Zoom session designed as a rare space just for you, not for the person you’re caring for. The next session is Thursday, August 20. Register here.

If you’ve been here a while, this is a love note and re-introduction. If you’re newer, welcome.

I’m Elizabeth Kleinfeld, writer, certified end-of-life doula, hospice volunteer, disabled person, widow, and someone who has spent the last few years learning, the hard way, how to show up honestly for the messiest parts of life.

I write about grief, disability, and what it means to keep going when the going is genuinely hard—not the inspirational version of that, but the real one, with all the frustration and dark humor and unexpected grace intact.

Here for All of It is not a wellness newsletter or grief recovery program. It’s a place to be honest about the parts of life we’re usually asked to keep quiet about—and to find out we’re not alone in them.

What you’ll find here

The newsletter comes out weekly. I write about my own experience as a disabled person navigating recovery from brain surgery. I write about grief and caregiving, about my late husband Tom, about my father and his Alzheimer’s, about the strange gifts and real losses that come with living a life that looks different from what you planned. I write about ableism, crip time, the ways our culture gets grief and disability wrong, and what it might look like to do better.

Nothing goes behind a paywall. Everything I write is available to anyone who might benefit from it. That’s a deliberate choice, because the people who most need this writing aren’t always the ones who can afford a subscription.

Workshops + Classes— I offer a range of live Zoom workshops on therapeutic journaling, including sessions specifically for grief, caregiving, chronic illness and disability, and closure. They’re two hours, they’re not recorded (to protect everyone’s privacy), and they use pay-what-you-can pricing. Paid subscribers get 20% off everything.

I also offer email courses on closure and boundaries.

You can see the full list of offerings here.

Thought partnering — This can help if you’re navigating grief, chronic illness, caregiving, or any of the other messy parts of life and need someone to really listen and help you think it through. I use sliding scale pricing and you get 45 minutes with no agenda except yours. Learn more here.

A one-on-one hour with me — this is for paid members, and it’s the thing I hear about most. Once a year, an hour for whatever you need. Not a sales call, not a coaching intake. Just a real conversation for whatever you’re navigating.

Why I do this

I became a caregiver when my husband Tom had a massive stroke in 2020. He died in 2021. In 2025 I had brain surgery and acquired several new disabilities. I’ve spent a lot of time in the last few years in territory that most people don’t talk about openly—the grief that starts before someone dies, the complicated feelings of caregiving, the experience of disability from the inside, the slow and nonlinear work of recovery.

I write about it because I needed to read it and couldn’t find it. I write about it because the silence around these things costs us something. And I write about it because every time I publish something honest, someone writes back to say I thought I was the only one—and that exchange is what keeps me going.

There have been weeks when I wasn’t sure I had anything left to give, and then someone replied to a post with two sentences about how it landed for them, and I found another week in me. You have no idea how much you give me back. The encouragement, the reflections, the simple act of showing up and reading. It gives me energy and motivates me to keep writing and sharing.

I’m also writing a memoir (the working title is The Caregiving Year) about the year I spent as Tom’s caregiver. Several chapters have been published as standalone essays, and I’ll keep sharing updates here as it comes together.

Tell me about you

I’d love to know who’s here and why.

You can reply to this email or leave a comment on Substack. Tell me what you’re carrying, why you showed up—or just say hello.

I’m really glad you’re here.

With love,
Elizabeth

Hello, friend.

I’m more than two weeks out from my psychedelic therapeutic journey, and the euphoria has worn off. What remains is quieter and feels more stable and like it may last.

I’m still upbeat in a way that feels unlikely given the state of the world, which seems to be perpetually on the brink of some new calamity. That alone feels like something worth noting. My therapist suggested that during the first few weeks after the journey I should avoid the news, which I have been doing and I’m sure that in and of itself has helped my state of mind. I’m still aware of the broad strokes of what’s going on but I’m not reading news articles or watch any news.

What I’m noticing most is about my dead husband Tom.

I still miss him as much as ever—that hasn’t shifted and I didn’t expect it to. I still wish I had understood things then that I understand now: what it’s like to live with unrelenting pain, to have half your body not respond to your brain, to be trying as hard as you can while the world sees no visible progress. I understand those things differently now, from the inside. I carry that.

But what’s gone is the lingering doubt about whether I did enough for him. I’ve known for a few years that I did the best I could, but I have felt terrible about how lacking my best was. Of course, I only knew it was locking because I’ve learned so much since he died that I didn’t know at the time that I was his caregiver. While I was on the journey, I spent some time with Tom. We didn’t speak—we didn’t have to I just knew by his presence that he I wasn’t holding any grudges toward me for being imperfect and for knowing so much more now than I did then.

When I saw him on my journey, I was filled with love and gratitude for the time we had together and I could tell that he was too. It felt like there was complete acceptance on his part of what I was able to give him after his stroke and there was no resentment that I wasn’t able to give him more.

Before the journey there was a part of me that thought if Tom loved me as much as I love him, maybe he was confused. Maybe I don’t actually deserve that kind of selfless love. I came out of the journey knowing, in a way I hadn’t before, that he loved me as deeply and purely as I loved him. That it was real, and most importantly that I was (and am) worth it.

The other thing I’m noticing is related to my father.

He has Alzheimer’s and lives in assisted living. He tells my sister and me that he doesn’t belong there, that he’s more independent than the other residents, and that he doesn’t understand how he got there. His faulty memory tells him that right up until the day he moved, he was out with friends, active in his community, doing fine. What actually happened is that for years he couldn’t safely care for himself at home—wandering on foot, driving and not remembering it, once found asleep in his car in a parking lot across town.

My sister and I both wanted him to age at home as long as possible, and about a year ago it became clear to us that we could no longer handle him being on his own. We were not able to give him the support that he needed to stay in his own home and, although he doesn’t remember it, he was part of the discussion about him moving to assisted living.

He remembers none of it, and when we tell him, he thinks we’re making it up.

I’ve been visiting him with my sister every week, and since my journey, something in me has opened toward him in a way it hadn’t before. His anger at us is frustrating, but underneath the frustration I feel a deep compassion for what his life actually is right now. Nothing is familiar. He’s 88, having to make new friends from scratch, his lifelong friends mostly gone, relearning how to exist in a place that isn’t home.

I’m 56 and I find starting over hard. I can only imagine what it is at 88, with a memory that can’t be trusted.

I’ve had two sessions with my therapist since the journey, working on what she calls integration—taking what I experienced and weaving it into how I actually live.

Something in me is softer than it was a month ago, and I’m not in a hurry to analyze it to death. I’m just going to let it be and continue unfolding and, perhaps, softening.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

P.S. : If this post resonated with you, you might find my Journaling for Grief workshop useful. It’s a two-hour Zoom workshop designed as a supported space to write honestly about loss — whether you’re in the early rawness of grief or carrying something you’ve held for years. Learn more here.

Hello, friend.

I read a post recently by Paul Ian Clarke about living with Long COVID and how easy it is to miss your own progress when it arrives quietly, incrementally, over months instead of days.

This resonated with me.

Most days, I feel like I’m not making any progress whatsoever. My left hand still can’t hold things reliably. I still can’t do my own hair reliably. I still drop things constantly. I still can’t type with both hands. I tire easily and have pain every single day, often bearable and often unbearable—although it turns out even unbearable pain can be borne.

When I focus on what I still can’t do, recovery feels impossible, like I’m stuck in the same place I was months ago, just going through the motions of PT and OT without anything actually changing.

But I realize I’m measuring progress on a timescale that’s too short to see it.

A few nights ago, I mixed a cocktail for the first time since my brain surgery last June. Not mixed as in poured ingredients into a glass. I mean I muddled ingredients, shook them in a cocktail shaker with ice, and strained them into a glass. Each of those steps requires two hands—though it might not look that way to someone who has always had two hands available and has never had to think about it. When you muddle, your other hand is holding the glass steady. When you shake a cocktail shaker, both hands are gripping it. When you strain, one hand holds the strainer while the other pours. These are not one-handed tasks dressed up as two-handed tasks. They genuinely require both.

A few months ago, I couldn’t trust my left hand to hold something still. I couldn’t trust it to grip the strainer. I couldn’t trust it at all, really. It was something I worked around rather than something I worked with.

The other night I trusted it—and it showed up.

The cocktail was, objectively, delicious. Cucumber, raspberry, mint, gin, and lime juice. But what I tasted underneath all of that was something harder to name—the specific satisfaction of doing something with my body that my body couldn’t do before.

And it wasn’t just the cocktail. I’ve been noticing it elsewhere too, in the kitchen especially, which turns out to be a good laboratory for testing what my left hand can and cannot do.

I made scallion pancakes a few nights ago. The recipe involved rolling rice paper around scallions into tight little ropes. I didn’t think about the fact that rolling is a two-handed activity until I was already doing it and my left hand had to join in. It had no idea what it was doing. It produced some of the most chaotic, lopsided, structurally questionable ropes you have ever seen. Abstract art. Avant-garde scallion sculpture. The pancakes were delicious. They looked absolutely ridiculous.

Rather than focusing on the fact that my left hand made a mess of things, I’m focusing on the fact that my left hand tried. It showed up. It attempted to do what my brain was telling it to do. The communication between my brain and my hand is happening. It’s clumsy and imprecise and sometimes painful, but it’s happening.

The same week, I lined a baking pan with parchment paper using both hands. I spread batter in that pan. I opened boxes that arrived in the mail. None of it was graceful. My left hand didn’t do any of it well. It hurt. But it was trying—actually trying, actually receiving signals from my brain and attempting to act on them. That’s what progress looks like right now: not competence but attempting.

I’ve been noticing other signs of progress. In my weekly dance lesson, my teacher will sometimes let me do moves now where he’s only holding onto me with one hand rather than two. That means he can feel that I’m steadier, that my balance has shifted enough that he trusts my body to hold itself in ways it couldn’t before. I feel it too—a groundedness that wasn’t there six months ago, a sense of my own center that I’m still rebuilding but can actually locate now.

I still find my left hand in unexpected places—pressed up against my face, or tangled in my hair, or smashed into a drawer—and I think, what have you gotten into now? Sometimes I put a barrette in my hair and then discover that my left hand, in its helpful way, has tucked itself into the hair along with the barrette, so that it is now technically part of my hairstyle. I still can’t button a shirt with both hands. I still can’t pull up my pants the way I used to. I may never be able to do those things again.

But I can make a cocktail. I can roll a scallion pancake, badly and beautifully. And a few months ago, I couldn’t do either.

These little moments of progress don’t announce themselves. In the moment I’m just trying to muddle some cucumber without dropping the muddler or trying to roll a rice paper rope that doesn’t look like a crime scene. I only see the progress when I turn around and look at it in the rearview mirror.

I’ve started doing that more deliberately. Not obsessively, not in a way that’s about measuring myself against some imagined version of who I should be by now. But just occasionally turning around and noticing I can do this now.

The dramatic progress came early—learning to walk again, being able to use the bathroom by myself, the big visible milestones that felt like plot points in a recovery story. That kind of progress is easy to recognize and easy to celebrate. This quieter kind is harder. It arrives without fanfare. It lives in the details of ordinary tasks—a cocktail shaker, a barrette, a dance frame that’s firmed up just enough to mean something, a scallion pancake that looks ridiculous and tastes like progress.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

P.S. I often rely on journaling to help me notice these incremental changes. If you’re interested in starting a journaling practice, my therapeutic journaling workshops might be of interest to you. You can learn more and sign up here.

Hello, friend.

I first heard about therapeutic psychedelic journeys from two widows after Colorado decriminalized the use of psilocybin mushrooms in 2023. Neither of them shared the details with me, but both said the same thing: it was profoundly helpful. Both of them had been looking to heal grief around the loss of their partners. That was enough to plant a seed. When my own grief therapist became certified to facilitate these journeys, I asked her about it, and eventually scheduled one for last November.

I had to postpone. The prescription painkillers I was on after my June brain surgery would have prevented the psychedelic mushrooms from having their full effect, so we moved the date to this past Saturday. That turned out to be a gift in disguise — it gave me months to work with my therapist on setting intentions, and it gave me time to slowly wean off all of my prescription painkillers and my antidepressant. My therapist worked closely with me and my doctors for about six weeks to prepare, helping me understand what to expect, formulate intentions, and figure out how to safely and comfortably wean off the medications that would counteract the medicinal properties of the psychedelic mushrooms. I went the entire month of March without any of my prescriptions, just to clear my system completely.

That month was painful. I won’t pretend otherwise. But it was bearable because I knew the journey would be worth it, and because the loving-kindness meditation practice I’ve been doing has helped me sit with discomfort in new ways.

Before I describe what the experience was like, I want to say something for anyone who — like me, until recently — has only ever heard of psychedelic mushrooms as a recreational drug, often referred to as shrooms or magic mushrooms. Since I was a teenager I knew they existed, though I never used them myself. The people I knew who did were looking for escape. The purpose of a therapeutic journey is fundamentally different. Instead of escaping, you’re looking for healing.

In my case I was looking for several kinds of healing at once. I wanted to work with my grief around the death of my mother, who died when I was 12, and the death of my husband Tom in 2021. I also wanted to continue processing emotional abuse I experienced from childhood and in several relationships and workplaces. And I was interested in physical healing related to the brain surgery I had last summer. Because of the brain’s plasticity and the ability of a therapeutic journey to help the brain make connections it might not otherwise make, my therapist, doctors, and I thought it was possible this treatment could help me change my relationship with the pain I’m experiencing — not necessarily eliminate it, but make it less consuming. Most journeys don’t focus on physical healing in this way, so mine was somewhat unusual in that regard.

The setting mattered enormously. My therapist had converted the basement of her home into a dedicated space for therapeutic journeys — decorated to be soothing, warm and cozy, with a sofa bed for me and a wood stove. It felt safe in a way that I think would have been hard to replicate in a clinical setting. The care she had put into that space was itself a form of preparation.

The journey itself was about five hours long. I drank a tea made of ground psychedelic mushrooms, lemon juice, and hot water — two doses, the second about an hour after the first, with a total of 4.6 grams of psychedelic mushrooms. My therapist and a nurse were with me throughout, along with two therapy dogs. One of the dogs was extraordinary — protective and attentive, wanting her head or a paw on me at all times. Her presence helped me feel completely safe and protected and allowed me to be very vulnerable, which I think is necessary to have the kind of breakthroughs these journeys can support

After I drank the first cup of tea, it took about half an hour before I felt fully under its influence. What happened then is difficult to describe: I became completely detached from my body. I kept forgetting I had legs. I was very much in my head — seeing images, feeling things, making connections. At one point I realized I had no idea where my hands were and didn’t feel any urgency to find out. It was profoundly disorienting and, at the same time, profoundly freeing. It wasn’t at all frightening.

My intention going in was simple: to be open to whatever healing wanted to come through. I wasn’t attached to a particular outcome. I just wanted to show up and receive.

What came through was more than I expected.

I spent about two hours of the journey laughing—full body, uncontrollable, joyful laughter, the kind that takes over your whole chest and belly. What I was laughing about was the pure joy of understanding. Things became clear to me during those hours in a way that felt both completely new and somehow already known, and the clarity was so delightful that laughter was the only response my body had. I made so many connections that just felt like a huge period at the end of a very long sentence. It was profoundly moving to be able to put so many burdens down.

With my permission, my therapist took a few pictures of me during the journey and it looks like I’m just sitting with a dog or even sleeping. The journey took place entirely inside my head, just me thinking and my thoughts exploding into new ideas and connections. Whenever I said something out loud, my therapist wrote it down, but most of what I said wasn’t itself a complete thought. For example several times I said something along the lines of, “Oh, now I understand!” But I didn’t say what I understood. Luckily, I remember what I understood and I’ll be having several sessions with my therapist in the next few weeks which will help me remember other things that I understood.

I’m still processing a great deal of what came through, and I’m not ready to share all of it yet. I have several appointments scheduled to work through it with my therapist, and I’ll share more as I’m ready. For now I will share that the journey allowed me to feel deeply connected to my mother, who I haven’t felt truly close to in a very long time. It allowed me to feel deeply connected to Tom, my husband who died in 2021. It opened something in me around love and support — for the universe, from the universe, and for myself. It helped me see that I am not only held by something larger than myself but that I am also part of it, contributing to it, part of the web of support that holds others too.

Something has shifted around the emotional abuse I’ve experienced in my life. I’ve known for years that I was blameless — intellectually I knew it. But there was always a whisper underneath that said maybe I was a little bit responsible, maybe I triggered something. After the journey that whisper is simply gone. I feel so much love and compassion for myself. I feel love and compassion for the people who hurt me, while also recognizing with complete clarity that their behavior was theirs to own, not mine. I have put it down. I don’t know how else to describe it.

I do not expect to do another journey. The effects of this one, I hope, will last for the rest of my life because I’m going to be very intentional about unpacking the journey and its lessons and talking them through with my therapist the same way I do other lessons that I learn in therapy. My therapist has facilitated dozens of these journeys, and she has told me that many of her clients experience after one journey what she would typically see after 2-5 years of therapy. The results of good therapy often last a lifetime. That is my hope here too.

Finally, for anyone wondering whether this kind of journey might help with suppressed or painful memories: I think it can, but I’d offer a caution from my own experience. During the journey it was impossible for me to distinguish between what was a memory and what was something I was imagining to fill in gaps. If working with suppressed memories is your goal, I would be especially careful to choose a therapist with specific training and experience in that area. These journeys, when done ethically, are guided by someone with real therapeutic training who is bringing genuine clinical intention to the experience — not just someone administering a substance. The therapist matters enormously.

If you’re curious about this kind of journey, I urge you to find a therapist you trust deeply, someone who knows you and has been part of your emotional work, someone in whose presence you feel genuinely safe. The journey requires a willingness to be completely vulnerable — with your body and your mind — and I don’t think I could have let go the way I needed to if I hadn’t been working with a therapist who had walked alongside me through four years of grief. The safety of that relationship was everything.

I woke up the morning after my journey feeling euphoric. I’m still riding that wave.

I’m happy to answer questions about the experience if this is something you are considering. Just DM me. I’ll post more about the connections and lessons of the journey as I’m ready to share them.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

P.S. If this post has you thinking about your own grief, healing, or the things you're carrying, therapeutic journaling might be a good next step — it's one of the most accessible and private tools I know for processing the stuff that's hard to say out loud. I offer several workshops on Zoom, including Journaling for Grief (May 21 and September 3), Journaling for Closure (June 4 and September 24), and Journaling Through Chronic Illness and Disability (June 18 and November 5), among others. All workshops use a pay-what-you-can model and are not recorded, to protect the privacy of everyone in the room. You can see the full list of offerings here.

Hello, friend.

I have no search terms.

That’s the text my father sent me over the weekend.

He has Alzheimer’s. I imagine he was trying to look up something on his phone — the weather, maybe, or a phone number, or the name of something he’d been trying to remember — and when he got to the search bar, whatever he’d been reaching for was gone. Not on the tip of his tongue—just gone.

So he texted me instead.

I didn’t respond. I saw the text and I didn’t know what to say, and these days if I don’t answer immediately the moment tends to pass and then I don’t answer at all. I never did respond. It’s a few days later and I’m still sitting with those four words, turning them over, trying to figure out what I feel about them — and about him.

Because it’s complicated. It’s always been complicated.

My father knows who I am. That’s not nothing. But he has never acknowledged my brain surgery. He has never acknowledged that I was widowed. He shows no particular interest in my life, in who I am or what I’m going through. This is not new, not Alzheimer’s. This is who he has always been, and I have spent a long time learning to engage with him with that knowledge firmly in hand, not expecting him to be someone he isn’t, not bringing my frustration to him because it would accomplish nothing and because, at this point, these are my issues, not our issues. He’s unaware of them and always has been.

It bothers me.

I argue with myself about fairness. Is it fair to hold a man with Alzheimer’s accountable for not remembering my brain surgery? No, of course not. I know that. But he would have failed to acknowledge it before Alzheimer’s too. The disease has taken a lot from him, but it didn’t create this particular absence. That was always there.

So I carry two things at once, and I suspect I will carry them for as long as he is alive and probably after. I love him. I am glad he still reaches out, still texts, still has enough curiosity left to go looking for something even when the search fails. I don’t want him to suffer. I don’t want him to spend his remaining years waking up every day in a place that doesn’t feel like his, reaching for thoughts that dissolve before he can catch them. I see and grieve what Alzheimer’s is taking from him.

And I also carry the long history of not feeling seen or valued by him, the grief of having a father who was never quite able to show up for me in the ways that mattered, and the strange additional grief of knowing that now, even if he wanted to, even if something shifted in him, he couldn’t. That door is closed. Whatever acknowledgment I might have hoped for is no longer possible — not because he’s chosen not to give it, but because the capacity for it is gone, if it was ever there at all.

I know that my anger and my grief about this are mine. I’m not expecting him to change or to suddenly see me. I made peace a long time ago — or something that functions like peace — with the father I actually have rather than the one I might have wished for.

Compassion and grief and frustration can all coexist. I can read I have no search terms and find it heartbreaking and beautiful and also feel the old familiar ache of wishing for a different kind of relationship with my father, one that never was I never will be and will continue to live inside me as an ache.

I have no search terms either, sometimes. No way to find the words for what it is to love someone who has never fully known you, and to grieve what you’re losing even when what you’re losing was always incomplete.

Alzheimer’s doesn’t arrive in a vacuum. It lands inside relationships that already have their own long histories — their own patterns of connection and disconnection, their own unfinished business, their own grief. There is no neat and tidy way to navigate memory loss when the relationship it’s happening inside was never neat and tidy to begin with. Dementia doesn’t reset the ledger. It just adds new complexity to an already complicated account.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

P.S. If you're carrying something that never got resolved — a relationship that ended without explanation, a conversation that never happened, a loss the world didn't make enough room for — my email course Getting Closure When the Universe Doesn't Give It to You might be for you. It's designed for exactly this: the grief that doesn't have a clean ending. Learn more here.

Hello, friend.

I got back from my conference in Baltimore over a week ago and I still feel incredible gratitude for being home.

The conference was wonderful. Stimulating sessions, meaningful conversations, good people.

But by the end, I was exhausted from navigating unfamiliar spaces.

The hotel room where I couldn’t find the light switches in the dark. The bathroom where I had to figure out a new shower configuration with limited hand function. The conference space where I was constantly managing my cane in rooms not designed for mobility aids. Airplanes. Airports. Restaurants.

Every space required problem-solving and adaptation. Every space took energy I didn’t have to spare.

When I got home, I was overwhelmed with relief. I had been carrying the extra burden of emotional labor every moment that I was gone

Because my house is familiar. It’s been designed for me—or tweaked by me—to work with my current abilities.

I know where everything is. I know which drawer sticks. I know exactly how much pressure the faucet needs. I know which stairs are safe and which require the railing. I know where I can set down my cane without it falling over.

My house holds me.

And coming home to that after days of unfamiliar spaces felt like finally being able to breathe again.

What I Understand Now

Since I got home, I’ve been thinking about my father.

He has Alzheimer’s. Last year, he had to leave the house he’d lived in for nearly 20 years—the house he absolutely loved—to move into a tiny apartment in assisted living.

And he’s constantly bemoaning that he doesn’t have things from his house.

Usually things he didn’t actually use when he lived there.

The best example is his workshop.

At the house, he had a full workshop: workbench, power tools, solvents, the random scraps of materials that every serious woodworker seems to collect with the idea that they will eventually incorporate it into something.

Even before he got old, my father was really good at starting projects and not so good at finishing them.

I can remember as a child walking into his workshop in a previous home and seeing the workbench littered with abandoned projects. Half-built birdhouses. Partially sanded furniture. Plans for things he’d started and lost interest in.

The workbench he had at his house before the move was no exception. Projects started. Projects abandoned. Dust accumulating on tools he hadn’t touched in years.

But his faulty memory now tells him a different story—it tells him he was using that workbench constantly.

It tells him that if he only had it with him now, he’d be able to build shelves in the bathroom. Add a recessed cabinet in the kitchenette. Fix all sorts of things for himself and neighbors.

He occasionally makes comments about having someone bring the workbench to his apartment so he could have it there.

It’s not going to happen. There’s no room. He can’t safely use power tools. It’s a fantasy. (Also, my sister and I rehomed the workbench, which a previous version of our father knew but the current version does not remember and frankly, we are tired of telling him.)

But now, after coming home from Baltimore and sinking into the familiarity of my house, I have much more compassion for that fantasy.

What He’s Really Grieving

My father isn’t actually grieving the workbench.

He probably doesn’t remember the last time he used it. He likely doesn’t remember what projects he abandoned there.

What he’s grieving is the loss of familiar space.

The house where he knew where everything was. Where he could navigate in the dark. Where the rhythms and patterns were his.

The workbench represents something bigger: the life he had. The person he used to be. The autonomy of living in a space that was his.

Even if he wasn’t actually using the workbench, it was there. It was available. It represented possibility.

Now he’s in a tiny apartment in assisted living. Not his space. Not his rules.

Everything is unfamiliar.

And that’s exhausting.

The Exhaustion of Unfamiliar

I spent four days navigating unfamiliar spaces and came home depleted.

My father has been living in unfamiliar space for months.

Every day, he wakes up in a room that isn’t quite his. The furniture is his but the layout of the space is not what he had become used to. With routines that aren’t quite what he wants.

Every day requires adaptation. Problem-solving. Figuring out where things are again.

And he has Alzheimer’s, which means his ability to adapt is compromised. His memory doesn’t help him learn the new space. Every day might feel unfamiliar all over again.

No wonder he wants his workbench.

It’s not about the workbench. It’s about having something that feels like his. Something familiar. Something that represents the life where he knew how things worked.

What Familiar Space Gives Us

Coming home from Baltimore, I realized how much I take my familiar space for granted.

I’d like a bigger kitchen, and a pantry in a different location. I’d like more windows that get southern sun.

But my house knows me and I know her. I’ve named her Eleanor and we have a relationship.

It accommodates my disabilities in ways I don’t even think about anymore. The bathroom grab bars. The kitchen organized so I can reach things with one hand. The furniture arranged so I can navigate with a cane.

More than that: it’s mine.

I chose the lights. I arranged the furniture. I know which floorboards creak and which cabinet doors stick.

That familiarity is a gift I didn’t fully appreciate until I spent days without it.

The Grief Is Real, Even When the Memory Isn’t

My father’s memory is faulty. He wasn’t using that workbench the way he thinks he was.

But his grief is real.

The loss of his house is real. The loss of familiar space is real. The exhaustion of living somewhere that doesn’t feel like his is real.

He’s grieving autonomy. Familiarity. The life he had before Alzheimer’s took it away.

And that grief deserves compassion, even when the facts—” I used that workbench all the time”—don’t line up.

My new approach

I used to get frustrated when my father would talk about the workbench. I’d think, “You never used it anyway. Why does it matter?”

But now I understand.

It matters because it represented a space that was his.

And losing that—even when your memory of it isn’t accurate—is a real loss.

I’m going to be gentler with him about the workbench.

I’m going to acknowledge what he’s really grieving: the loss of a space that knew him and that he knew.

Because I’ve felt that too, for four days.

And it’s hard.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

P.S. If you’re carrying grief for someone who’s still here — or a loss that will never fully resolve — my email course on getting closure when the universe doesn’t give it to you might be for you. Learn more here.

Hello, friend.

I just attended a writing conference in Baltimore. It was wonderful in many ways—stimulating sessions, opportunities to connect with colleagues, the energy of bringing writers together.

But it cost me a lot to attend. Financially, yes, but I’m talking about the energetic cost.

Especially if you have anything to do with event planning, you need to know how your choices affect attendees with disabilities, chronic illness, or limited energy. These are things that might not be on your radar but could be fixed with some forethought.

The Spoon Theory

In her essay “The Spoon Theory,” Christine Miserandino uses spoons as a metaphor for units of energy. People with disabilities or chronic illness have a limited number of spoons each day. Every activity costs spoons. When you run out, you’re done.

I’ve been recovering from brain surgery. I’m getting stronger—doing PT and OT religiously, exercising, working, functioning independently for days at a time.

When I registered for this conference back in the fall, I thought, “Surely by March I’ll be fully functional.”

And I am functional. I made it through the conference. I participated. I took notes. I had dinners with friends.

But being at the conference—constantly surrounded by noise and activity and people—took every single spoon I had.

Here’s what conference organizers need to understand: even the things attendees love doing cost spoons.

Problem #1: Nowhere to Put Mobility Aids

I use a cane. And there was nowhere to put it.

The conference had designated spots for wheelchairs and a couple of chairs for people with disabilities in each session room. That’s good. But even those spaces had no accommodation for canes.

The chairs were narrow and pushed together with not a bit of extra space, so nowhere to lean a cane without it falling over and hitting someone or blocking the aisle.

I spent the entire conference managing my cane. Worrying I’d drop it and trip someone. Finding a spot for it, then watching it lean over on its own and hit the person next to me.

This took constant mental energy.

What conference organizers can do:

• Include wider spacing in accessible seating areas

• Provide small hooks or clips on chairs for canes

• Designate aisle seats with extra floor space for mobility aids

Problem #2: The Registration Process

To pick up my materials, I had to stand in a line that snaked through a lobby and up a flight of stairs with handrails too far apart for me to use.

There WAS a designated express lane for people with disabilities, but it was hidden by the zigzagging of the main line, and I didn’t see it until I was almost through.

Although staff were managing the crowd, none of them offered to redirect me to the accessible lane.

When I got my materials, there was no surface to set them down on. The next person was called immediately, so I had to juggle everything while trying to organize my badge, program, and bag.

Then there was no seating near registration, so I had to carry everything up stairs to sit on a planter.

What conference organizers can do:

• Make the accessible registration lane clearly visible from a variety of different vantage points and well-marked

• Train staff to proactively offer accessible options to anyone with visible mobility aids

• Provide tables or counters where people can organize materials after receiving them

• Include seating near all major service points

• Consider bringing registration materials to people who can’t navigate the line

Problem #3: No Place to Gather (So People Block Transit Areas)

For three days, I constantly noticed groups of people congregating at the top or bottom of staircases, at escalators, and in doorways.

This isn’t because people are rude or inconsiderate. It’s because there was no other place to congregate.

The conference had big vacant open spaces with no seating. That’s not inviting. It doesn’t signal “this is a place to gather.”

The groups I saw were standing, and they could have moved into those open areas. But people want something to lean against. Which is why a staircase or doorway or escalator feels like a reasonable place to gather.

But those gathering spots create barriers for people with mobility issues. Navigating through a cluster of people while using a cane or wheelchair takes energy and creates safety risks.

What conference organizers can do:

• Designate specific gathering spaces with visual cues (furniture, signage, lighting)

• Provide seating in gathering areas

• Include architectural features that invite gathering WITHOUT blocking transit routes

• Put up signs reminding people to keep stairs, escalators, and doorways clear

Problem #4: Constant Noise and Stimulation

I loved the conference. The sessions were amazing. The conversations were rich. The energy was wonderful.

And it was relentlessly loud and stimulating.

To be clear: this conference did many things right. They had a designated quiet space. They offered some virtual attendance options. They built breaks into the schedule.

And it was still too much for me.

I came home completely depleted. I spent an entire day doing almost nothing. Just sitting in my quiet house. Recovering.

I’m still tired.

Here’s what conference organizers need to understand:

You can implement all the recommended accommodations and it can still be overwhelming for some attendees. That’s not a failure on your part. It’s just the reality of large gatherings.

But what you can do is:

• Be honest in your marketing about what the sensory environment will be like (crowds, noise levels, constant stimulation)

• Remind attendees to pace themselves and take breaks

• Make it clear that it’s okay to skip sessions, leave early, or not attend everything

• Normalize the idea that functional doesn’t mean limitless

The goal isn’t to eliminate all stimulation—that’s what makes conferences valuable. The goal is to help attendees make informed decisions about whether they have the capacity to attend and how to manage their energy while there.

The Bigger Point: Functional Doesn’t Mean Limitless

Here’s what I learned at this conference: I am functional. I can travel. I can attend events. I can participate fully.

But all of it takes energy I didn’t used to have to think about.

And many of the accessibility barriers cost me spoons I didn’t budget for.

I’m not asking conference organizers to make events perfect. Accessibility is endless—it can always be improved.

But I am asking organizers to:

• Ask attendees what they need during registration (The conference I went to did ask this during online registration, but of course, once I saw the space I had requests that I didn’t have originally)

• Train staff to proactively offer accommodations

• Think through the full attendee journey from a disability perspective

• Provide options (seating, quiet spaces, accessible routes, breaks)

• Test your assumptions by bringing in consultants with disabilities

Accessibility Is Never “Done”

Conference organizers need to understand: there’s never a time when you can say “Okay, we’ve got all the accessibility stuff figured out.”

Accessibility is a constant process. Every conference will present new challenges. Different attendees will have different needs. Not all needs can be met.

But the goal isn’t necessarily to meet all needs. The goal is to meet the needs it’s possible to meet, be honest about the needs you can’t meet, and be accountable for the decisions you make.

I’m Tired of Being Grateful

Disability rights activist Judy Heumann once said, “I’m tired of being grateful for toilets.”

Her point was that disabled people have to constantly express gratitude for basic accessibility—like having a toilet they can actually use. As if it’s a special favor rather than a basic right.

I thought about that comment as I made this list of inaccessible features at the conference.

I thought about how I’ve seen men’s rooms and women’s rooms be the same size my entire life, even though everyone knows women take more time in the bathroom and women’s rooms are more likely to have lines. Women’s rooms should be larger. Why aren’t they?

Enough.

Most bathrooms have one or two accessible stalls. And in women’s rooms especially—because there aren’t enough stalls in general—non-disabled people use the accessible stalls. I don’t blame them. Sometimes they have a child with them, or they’re having an emergency, or they’re just tired of waiting in line and the stall isn’t being used.

But accessible stalls exist for a reason. And that reason cannot be respected if the women’s bathroom continues to be too small to accommodate the traffic.

This isn’t that hard, people.

Access Fatigue

I am tired of being grateful that I can attend a conference with my non-disabled writer peers.

This is what writer Annika Konrad calls “access fatigue“—the exhaustion of constantly having to negotiate barriers that shouldn’t exist in the first place.

The exhaustion of having to plan around accessibility issues instead of just attending.

The exhaustion of being expected to be grateful for accommodations that should be standard.

The exhaustion of educating organizers about barriers they should have anticipated.

I want conference organizers to understand: every time you create an accessibility barrier, you’re asking disabled attendees to spend spoons on problem-solving that non-disabled attendees don’t have to think about.

And we’re tired.

This Is a Systemic Problem, Not an Individual One

When we think that accessibility issues are the responsibility of individuals—like individuals waiting to use the bathroom shouldn’t use the accessible stall if they’re not disabled, or individual people at a conference who use canes need to figure out how to manage their canes without hurting others—we are denying the systemic nature of ableism.

This is not a problem that individuals should be dealing with on their own.

The system needs to change.

Yes, individuals can make better choices. But we can’t individual-behavior our way out of systemic problems.

We need bigger bathrooms with more stalls so people aren’t forced to choose between waiting in a long line or using an accessible stall.

We need conference spaces designed with mobility aids in mind so people with canes aren’t constantly managing a barrier that shouldn’t exist.

We need systems that account for disability from the beginning, not as an afterthought.

Conference organizers: you have the power to change systems. Use it.

Even the Good Things Take Spoons

I’m glad I attended this conference. I learned a lot. I saw people I love. I had experiences I wouldn’t have had otherwise.

But I also used every spoon I had. And some of those spoons were spent on barriers that could have been prevented.

Conference organizers and event planners: please think about this when you plan your next event. You’ll create a better experience for everyone—because accessibility benefits all of us.

And to fellow attendees: if you find accessibility accommodations inconvenient—if someone’s cane falls and hits you, if the accessible line takes up space, if lighting changes make note-taking harder—direct your frustration at the right target. Not at disabled people, but at ableism. At systems that create barriers instead of removing them. At organizers who design spaces without considering mobility aids.

We all benefit when systems work for everyone.

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If something here resonates with you, I’d be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I’m grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

P.S. Learning to manage limited energy means setting boundaries—with yourself and others. It means saying no to good things to preserve capacity for what matters most. It means not feeling guilty for your limitations. My email course Setting Boundaries Without Guilt walks you through exactly this: how to set boundaries, handle the guilt that comes up, and advocate for what you actually need. Learn more here.