Feeling Normal for 8 Hours at Camp Widow

A conference for widows? Yes, it exists and it is called Camp Widow. Last Saturday, I spent all day at a Camp Widow pop up. Camp Widow is typically a weekend-long event, but the pop up is just one day, which makes it more accessible for some people. All Camp Widow events bring together widowed people to learn from and support each other. The events are put together by the Soaring Spirits organization, which researches and supports widowhood. It’s basically a conference for widowed people, with large-format addresses to the whole crowd and breakout sessions on specific topics.

Being surrounded by other widowed people is an incredible experience. In a support group, there may be ten or so other widows. At Camp Widow, there are 100+. Being in a room full of widows, where widowhood is not just normal but expected, is liberating. The whole time I was there, I knew deep in my soul that I would not come across as weird or be judged as grieving for “too long.” I talked to many people who immediately “got me.” Widows are my people—we can talk for 20 minutes, completely skip the small talk, and go right to, “How far out are you?” (widowspeak for “when did your person die?”) or “How are things with your in-laws?” There’s no need to worry about being the awkward person who brings everyone down or trying to figure out an organic way to mention that you are a widow.

At Camp Widow, the definition of “widow” is inclusive. Anyone who feels like they lost “their person” to death counts as a widow. There are some widow groups that parse out who gets to claim the title of “widow,” but Camp Widow uses a broad definition. Participants are reminded frequently throughout the event that no one’s grief can be measured against someone else’s. Regardless of how long you’ve been grieving or what the circumstances are of your person’s death, if you feel you belong at Camp Widow, you are welcomed.

The entire event was designed and organized to be safe and inclusive. A day or so before the event, registrants received an email about a motorcycle safety course taking place at the same location as the camp; because so many widows lost their person to motorcycle accidents, the organizers wanted to give folks a heads up that they might see motorcycles. The email mentioned that support people would be available if anyone was activated by the sight of motorcycles. That’s the kind of small gesture that goes a long way toward inclusivity.

Throughout the entire event, volunteers were visible to help us find rooms for sessions, answer questions about the organization or the schedule, and guide us toward bathrooms. It was a far cry from most conferences I’ve been to where I can never find anyone to read room number signs to me—or when I do find someone, they are condescending about having to read to an adult.

There were sessions on love after loss, what to do with your loved one’s things, common concerns for people who are newly widowed, 1-3 years out, 3-5 years out, more than 5 years out, and my personal favorite: navigating widowhood as an introvert. The session itself was useful, but the best part was being able to identify other introverts during the rest of the event. I knew exactly who would be ok with sitting with me in near silence during lunch. Throughout the sessions I attended, I got the clear message that what I was feeling was normal—that there is no shelf life on grief.

For the entire time I was at Camp Widow, I was normal. I got an 8-hour respite from monitoring and managing my emotions. I cried when I felt like crying, without any concern for who would notice or what they would think. I saw others do the same. It was glorious.

The next two days were not so glorious. I was exhausted, fuzzy-brained, and anxious. Despite how amazing the Camp was and the liberation of not having to manage my emotions, there was a distinct “hangover” effect. I was in a daze most of Sunday and exceedingly cranky on Monday. Today (Tuesday) I mostly slept. Camp Widow didn’t lessen my grief at all; in fact, my grief feels fresher now, perhaps because of being able to freely express it at Camp Widow.

And I am glad I went. So much of being widowed involves “and.” I can cry and feel joy. I can be inspired by Camp Widow and the pain of my heartbreak can feel fresh again. I can love my late husband with all my heart and I can move forward with my life. To most people, that sounds like a contraction, but to my 100+ new widow friends, it makes sense.

Showing Up for Death

Watching someone die is hard. Sometimes we know we are watching someone die—perhaps they are in hospice or a medical professional has estimated how much time they have left. Other times, we may notice a slowing down and have a creeping realization that this person is moving toward death.

I watched my husband die for 53 weeks after his stroke. He faded very slowly, in fits and starts, so that it was possible for me to convince myself that he wasn’t actually dying at all. He maintained his vigor and bravado right up until the end, even when he had stopped eating. His death was a shock to me, although I knew that from the moment of his stroke, I was “walking him home,” an expression spiritual teacher Ram Dass used to express the shared experience of embracing the inevitability of death.

As painful as it is to watch, I think being with someone in their final months, weeks, days, or moments is an honor and even a responsibility. As much as we may want to turn away, I think we need to bear witness to death. Death is a totally natural part of life. Witnessing it normalizes it. Showing up for a person who is dying is one way to show respect for life itself. A person who is dying isn’t dead yet and many of their needs are like those of the rest of us: they need to be seen, heard, and acknowledged; they need to feel loved and valued; they need to feel remembered; they need to not feel abandoned.

I think one reason people avoid showing up for death is that they don’t know what to do. People who are dying are often less able to participate in conversations. We may wonder what to talk about with a dying person or how to engage them. We may feel pressure to keep a conversation going but feel nervous about which topics are “safe.” Here’s what I learned in my husband’s last year: it is easy to meet the needs of people who are dying if we focus on those needs rather than our fears.

Every one of those needs can be met by simply showing up. What is the most basic way of letting someone know they are seen and heard? Being there in person or on the phone with them. What is the most basic way of showing love? Making the effort to be there in person or on the phone. How can you let someone know you remember them? Be there. How do you let someone know they haven’t been abandoned? Sit with them.

Simply sitting in silence with someone who is dying is completely ok. I spent hours and hours in silence with my dying husband, simply holding his hand. When he had lost consciousness and was being kept alive by a ventilator, I told him over and over, “I’m right here.” In other words, I was not a brilliant conversationalist. Cake’s post on watching a loved one die emphasizes that it’s your presence that matters, not the conversation, and that silence is completely ok.

If you’re interested in learning more about dying and showing up for dying, I highly recommend Sallie Tisdale’s book, Advice for Future Corpses (and Those Who Love Them). Tisdale is a Buddhist and brings Buddhism’s characteristic lack of sentimentality about death to the subject. (In my introduction to Zen Buddhism in 1997, the teacher led with, “Let’s face it: we’re all on a one-way trip to the boneyard.”) She offers concrete suggestions for what to say and not say. She recommends being kind to yourself, cutting yourself slack when you don’t show up exactly as you wish you had.

Perhaps the advice of Tisdale’s that was the hardest for me was to let the dying person talk about death and dying. My husband wanted to talk about it, but I was afraid that if I acknowledged he was dying, he would slip away faster. If I could change one thing about how I showed up for his death, it would be to not change the subject or dismiss his worries when he wanted to talk about dying. All I had to do was listen.

And now, as Tisdale advises, I need to cut myself a little slack.

The Difference Between Bearable and Unbearable Grief

Returning to places I used to go to with my late husband is always a bit emotional. Being in the airport reminds me of how he made everything into a competition (I had TSA pre-check and he didn’t, so he had to go through the regular security line; he would repeatedly catch my eye from his line and signal that he was going to beat me through—he was jubilant the time my bag was selected for extra searching and he did actually beat me). Going to the local arts festival reminded me of how he would impulsively buy artwork. Shopping for produce reminds me of the time he somehow aroused the suspicion of a grocery store security guy and got followed throughout the entire store, prompting him to crouch down and navigate through the produce section like a ninja.

I have deliberately avoided going to some of the places we went to together because I suspect being there without him will be very emotional for me. One of our favorite restaurants is in our neighborhood, just a few blocks from the house. Before the pandemic, we went once or twice a month, often just sitting at the bar to eat oysters and have a glass of wine. It was our go-to place for small celebrations, like me getting a paper published or him scoring a victory at work. After his stroke, we weren’t able to go, because of both the pandemic and his mobility challenges, but we did get carryout twice. After he died, I had to work up the nerve to just walk past the place and many times I started to walk past it, felt emotion welling up in my chest, and changed my route.

Last week, my brother-in-law and his wife were in town and they suggested we all have dinner at that restaurant. I immediately agreed, with the caveat that I might in the moment not be up for it, which they understood. We decided to go on Monday night. One of my first thoughts that morning was, “I’m having dinner there.” The anticipation built up all day. I had no idea how it would hit me to actually be inside the space. I felt fragile all day—a little on edge, a little protective of myself.

There’s an Albert Gyorgy sculpture called “Melancholie” that portrays grief as a gaping hole where the heart, lungs, and other organs should be. This image of grief captures the enormity of both the loss I feel and the irony of still having a body that moves through the world. On Monday as I moved through my day, going to work and then walking the dogs, I might as well have had my organs torn out. I felt raw and vulnerable.

When my brother-in-law and his wife arrived, they asked me if I was still up for going to that restaurant and I said, “Let’s do it.” I was no more up for it than I had been a few months ago, but I was tired of carefully avoiding walking past the place. Stepping into the space, smelling the old familiar scents, seeing the dark wood that my late husband loved so much, having flashes of so many memories of celebrations at the bar, was overwhelming for a moment. The place was busy and we were surrounded by the buzz of other diners. The three of us took a long time going over the menu, with me telling stories about which dishes my late husband had particularly enjoyed. One of the benefits of a busy restaurant is that everyone else is too absorbed in their story to notice three people crying at the next table.

We toasted him repeatedly. I kept noticing the empty chair beside me, where Tom would have been. His absence was so tangible it felt like he was there, one of the many ironies of loss.

It was a delicious meal, full of love. I felt deeply connected to my brother-in-law and his wife. I think it would have made my late husband very happy to see the three of us there together, laughing and crying and toasting him. When I got home, I sobbed for a long time, lingering over the memories we had talked about at dinner, savoring each one and mourning that there will be no more.

I loved feeling so close to my brother-in-law and his wife and being flooded with memories of celebrations with my late husband. It didn’t lessen my grief one bit, but it allowed me to share my grief. It didn’t make my grief more bearable, but it made it differently bearable. If grief is a gaping hole where my organs should be, for the time I was in the restaurant, I knew I wasn’t the only one with that gaping hole. But the hole is still there, and it might be even bigger because I have a better understanding of the gravity of loss my brother-in-law and his wife feel.

The grief was exactly as hard and painful as I thought it would be. I had anticipated it to be unbearable, but I did bear it, so it turns out the grief was bearable. The only difference between what I felt and what I thought I would feel is the label. It turns out I can sit in a restaurant for 90 minutes feeling completely gutted. I had mislabeled that as unbearable, but now I know it is bearable.

There is no hack to make it more bearable.

Stop Shaming People Who Use Accommodations to Work Remotely

“Please make an effort.” “It would mean a lot to me if you were there in person.” “Make every effort to be there in person.” These are a few examples of the ablest and shaming rhetoric I’ve heard lately on campus about using accommodations to attend meetings remotely. My colleagues and I who have accommodations to attend meetings remotely are regularly asked to “make an effort” to attend face-to-face. The implication is clear: if you use your accommodation, you are not making an effort.

Campus leaders routinely engage in ableism, framing accommodations as attempts to not put in effort. I was recently in a meeting in which a colleague showed a video; as it began without subtitles, an attendee asked, “Can you turn the subtitles on?” The colleague said, “Can you just make an effort?”

Or using accommodations is framed as ruining everyone else’s fun, as in this example: A colleague described an icebreaker they had planned for a meeting that involved attendees doing some silly activities with a tight time limit. I asked, “What if some folks have accommodations for anxiety? Wouldn’t this ice breaker cause anxiety?” My colleague argued that the icebreaker was just for fun. For me, being humiliated by having an anxiety attack in from of my peers is not my idea of fun.

When people do use their accommodations, the culture of shaming can show up in disgruntled whispers of colleagues who ask incredulously, “What’s their disability?!” or comment, “I wish I didn’t have to attend in person!” or “It’s inconvenient for me, too, but I manage it.” These whispers are encouraged when the leader begins the meeting by saying, “That you all for making the effort to be here,” implying that folks who aren’t there didn’t make an effort.

I’ve written before about the challenges of getting documentation of a disability so I can get accommodations  and about why I don’t always ask for accommodations I am entitled to. The entire process of justifying accommodations is disempowering, humiliating, and time-consuming. Then, once a person goes through that process, they are shamed for using the accommodations.

On my campus, leaders regularly shame people who use their accommodations to attend meetings remotely instead of in person. Here are some examples of the shaming language I have heard lately:

What leaders say: “people are tired of remote meetings” or “staring at a screen is exhausting”

Translation: it’s your fault that people still have to attend remote meetings and be exhausted

But here’s the truth: many people dislike meetings whether they are remote or in person.

Here’s another truth: many people prefer remote meetings and are better able to engage when they can be home with their pets and/or children or in an environment they can control.

What leaders say: “I expect you to be there in person”

Translation: If you are not there in person, you are not meeting expectations. This echoes the language of evaluation in which people who are evaluated as doing their jobs poorly are rated “does not meet expectations.” Not meeting expectations is bad and shameful.

The truth: The expectations of leaders are often unreasonable and not grounded in the reality of workloads, bandwidths, and structural inequities.

What leaders say: “This is a reasonable expectation”

Translation: I have not done any research into this, but I strongly prefer in-person meetings and this is how we did things in the before-times and everyone was fine with it.

The truth: No, everyone was not actually fine with it. You didn’t ask or you weren’t listening or people didn’t feel empowered to speak up. Parents and other caregivers, people with disabilities and/or unreasonable workloads were not fine with it. I have never been fine with most in-person meetings, which are typically run badly and take me away from doing the meaningful work of teaching and research.

What leaders say: “The benefit of face-to-face meetings outweigh the convenience of attending from home via Zoom”

Translation: attending via Zoom is a mere convenience for people who are lazy, unmotivated, disengaged, and/or not prioritizing the important work that will happen at this meeting.

The truth: Accommodations are not about convenience, laziness, motivation, engagement, or priorities. Accommodations acknowledge differences in bodies and neurology. My glasses are technically an accommodation, not something I use because they are convenient or I am lazy. Glasses are commonplace enough that we don’t typically recognize them as an accommodation. Surely, a supervisor wouldn’t ban people from wearing glasses to a meeting. But if I ask for special lighting, I am likely to be told that there are others who will be bothered by that lighting. Why not let me attend remotely, then, so that I can control the lighting in my workspace without impacting others?

An anti-ableist alternative to all of these examples is to acknowledge that there is no one-size-fits-all mode for meetings. We might even begin by evaluating whether a meeting we are planning is necessary. Once the specific purposes of the meeting are identified, a reasonable judgment can be made about whether the purposes will be undermined by remote attendance.

Any time a leader questions the legitimacy of an accommodation, they create a culture of ableism in which disability is seen as evidence that someone is “broken.”

Savoring Peace in Grief: I am Happy (and Crying)

It’s been just about 14 months now since my husband died. The shock of him being dead is mostly gone, the bureaucratic aspects of his dying are mostly complete, and I have mostly established new routines and rhythms that feel good. And yet, I still miss him and the life we had intensely.

There is a lot of contradiction in my life right now. It’s hard to explain that I’m not at all lonely or depressed, but I cry every day, sometimes off and on for most of the day. I still keep boxes of tissues in every room of the house and always have some with me when I leave home.

Someone watching me cry off and on all day might say, “But your crying is getting in the way of you writing more or cleaning your house more or blah blah blah.” Real talk: noting is getting in the way of me cleaning my house more except for my dislike of cleaning. I could write more, I suppose, but I’m actually satisfied with the amount of writing I’m getting done right now. My crying isn’t keeping me from doing anything I want to do. Odd as it sounds, I sometimes prefer crying to doing something “fun.”

The platitudes about keeping busy, making new friends, and reinventing myself as a widowed person aren’t helpful. I am busy, I have made new friends, I am reinventing myself as a widowed person.

My life is full of love and laughter—and crying and missing my late husband. I don’t want for love or joy or laughter, I want for that love, that joy, that laughter that he and I shared. There are things I miss that he and I did together that I could do with others or by myself. For example, I haven’t been camping since he and I went in May 2020, right before his stroke. I have a number of friends who would take me camping if I asked, but I don’t want to go camping—I want to go camping with him. I want to snuggle into our big red double sleeping bag and joke with him about the dogs snoring. I want to wake up in the morning to him making cowboy coffee. I want to read in camp while he goes for a motorcycle ride and then listen to his stories about what an epic ride it was.

For me, this is what 14 months out looks like and I’m not concerned about it. My continuing grief is only a problem if I identify it as one—and I don’t. I am at home in my grief and also in my new life. I have plenty of meaningful work, hobbies, and relationships.

I think I am simply continuing to turn toward and relax into grief. When I originally blogged about that, I noted that Buddhist meditation teacher Doug Kraft identifies “three essential moves” of grappling with difficult emotions: turning toward, relaxing into, and savoring peace.  (Technically, Kraft says these are three essential moves of Buddhism, but because Buddhism focuses on letting go of suffering, I think it’s a fair paraphrase to to say the three essential moves can be applied to difficult emotions.) I began turning toward and relaxing into my grief last fall. I think what I am experiencing now—the feeling of being at home in my grief—is “savoring peace.” When I first read about “savoring peace,” I had no idea what it really meant, but now I do very much feel at peace and there is an element of savoring, of really enjoying and appreciating the depth of my grief experience, free from any sense that I should be feeling or doing something differently.

Disability = Normal. Disability ≠ Brokenness.

I’ve been very public with my vision issues and my recent experiences with anxiety. I do this to normalize disability. Living with disability is totally normal for me and for lots of other people. The most recent statistic I saw is that one in four adults in the U.S. has a disability at any given moment. The longer you live, the more likely it is that you will acquire a disability. My late husband is a great example: he lived without disability for decades and then when he was 60, he had a massive stroke that left him with multiple disabilities. He went from completely able-bodied to disabled in a split second.

Despite the fact that so many people are or will be disabled, we have a hard time as a culture understanding disability without judgment. The assumption that everyone is or should be able-bodied is called ableism and it is everywhere. I wrote about the challenges my late husband and I faced trying to get around downtown Denver when he was using a wheelchair last year. The restaurant that required wheelchair users to send a companion in to ask for help, wait for the right employee to materialize, get escorted around the building, and then traverse a large space in front of an audience had designed its entrance with the assumption that all patrons would be able-bodied.

I recently listened to a fantastic podcast on ableism. Glennon Doyle featured Carson Tueller on the July 27 episode of her podcast We Can Do Hard Things. The episode was titled “How to Love Your Body Now,” which is an idea that can apply to anyone, able-bodied or disabled. Carson Tueller, who was paralyzed from the chest down in an accident in 2013, told the story of how he came to accept, love, and feel at home in his body, recognizing it as “complete and enough.”

Tueller explains ableism as “the idea that there is such a thing as a good body and a disabled body is a broken version of a good body.” I like this explanation because of its use of the word “broken.” Something that is broken is damaged or ruined. We throw out things that are broken. When we understand some bodies as broken, we bring with us into that understanding the connotations of “broken”—that the body is ruined, it should be thrown out. The person living in the disabled body is seen as disposable. Unlovable. Unworthy.

Tueller shares that after his accident, he found a new way of thinking about his body. Instead of thinking of his body as broken, he thought, “My body now works differently.” That may seem like a small shift, but as Tueller explains, there is “no drama, no brokenness there” and that thinking of the accident as something that changed his life rather than as “a disaster that ruined my life” made it possible for him to see his body in its current state as complete rather than broken.

Notice that it’s not the injury or disability itself that causes the feelings of disposability or unworthiness—it’s the ableism that assumes a disabled body is broken. As Tueller says, “I can survive being paralyzed. I can’t survive feeling unlovable.” Tueller has found that living in a disabled body is quite wonderful (and I was thrilled to hear him disrupt the notion that disabled bodies aren’t sexy or that disabled people are asexual—he is having great sex).

When we assume that disability needs fixing, we convey that disability is a de facto problem, that something is wrong with people who have disabilities. There is nothing wrong with my eyes. My eyes can’t be wrong. Yes, my eyes function differently from lots of other eyes. But my frustrations with my vision are usually connected to something outside of me that could be fixed. For example, one of my most common challenges is not being able to read signs. Why is the assumption that my eyes are the problem rather than the poorly designed signs? I meet people all the time who can’t read street name signs, street numbers on buildings, and the like. Why not just make bigger signs or use a different font and make everything easier for everyone?

This idea that the problem is located in the person with the disability is ableism and it sneaks into our lives in insidious ways. In “Unlearning the Ableism of Cookbooks and Kitchen Wisdom,” Gabrielle Drolet brings attention to what she calls small-scale disability—”the little things that add up to make a life. Things like tying your shoelaces or braiding your hair or lighting a candle. Like turning on the faucets to wash your hands. Texting your friends. Cooking with ease.” The type of ableism Drolet identifies in cookbooks is less about brokenness and more about laziness. The cook who buys pre-ground pepper or uses paper plates is assumed to be lazy or wasteful. I was called wasteful when I bought two identical cutting boards, one in white and one in green, but with low vision, I can’t see the onion I’m cutting on a white board or the basil I’m cutting on a green board. The person who called me wasteful didn’t ask why I wanted two boards—they jumped straight to calling me wasteful.

Ableism is so deeply baked into our culture that during Disability Pride Month (July), someone asked me why anyone would take pride in being disabled. This was a person I know to be kind and generous. The question was a genuine one and grew out of the idea that being disabled equals being broken. Why take pride in being broken? To grasp taking pride in being disabled, you have to reject the idea that disability equals brokenness.

I am not broken. I do not need fixing. I love myself, my eyes, and even my anxiety. My low vision and anxiety are natural and normal. I refuse to be ashamed of them.

In Praise of Crying + How to Trigger It

Crying releases endorphins, hormones that help relieve stress and make us feel more at peace. It’s also actually good for our eyes. It’s possible that crying can even help us sleep better, although the research to date has focused on babies rather than adults. Here are a few short articles on the benefits of crying:

Since my husband died last year, I have cried a lot, often every day for weeks or months in a row, so I was surprised earlier this summer when I felt like I wanted to cry but I couldn’t seem to summon up any tears. It was frustrating because I felt the build up inside of me that tells me I need to cry . . . but with no crying, there was no release of that build up. I felt it in my chest, a tightness first and then a weight that grew and grew. It got to where I felt like I couldn’t even take a deep breath.

I knew that once I could get myself to cry, that pressure would be relieved and those endorphins would flood me with feelings of peace.

I’ve had conversations with two people recently who are grieving but feel like they can’t cry. Like I felt a few weeks ago, they want to cry but they can’t seem to do it. This made me realize I’m not the only one who experiences this.

I’ve started a list on my phone of “crying triggers” that I can turn to when I want to cry but can’t seem to. None of these things works all the time, which is why I need a long list. I can work my way down the list or just randomly try something from it until I find the thing that will do the trick that particular day. Here is my list:

  • Listening to music. Music is a powerful trigger for me. I have a playlist called “Life after Tom” that is music he loved or music that reminds me of a particular experience we shared. He loved Carsie Blanton, so there are a few of her songs. We went to Old Crow Medicine Show and David Bromberg shows together, so there are songs by them. He never started a motorcycle ride without cranking up the Gourds version of “Gin and Juice,” so that’s there. Buena Vista Social Club’s “Chan Chan” reminds me of our trip to Cuba.
  • Listening to recordings of my late husband’s voice. Had I known he was going to die so young, I would have saved every voice message he left me, but I only have a few random ones from the last couple of years. Even though most of them are just him saying something like, “Hey, wanted to let you know I’m stopping for a drink after work,” just hearing his voice and remembering what normal life with him was like can bring tears.
  • Watching videos of him. I am lucky to have a lot of videos of him, partly because he did a lot of ridiculous things that demanded recording, like challenging his brother to a pogo-stick versus stilts fight. I also have videos of him playing with the dogs, working hard in PT after his stroke, and zipping around in the street in his motorized wheelchair (I love that video because there’s my voice in the background yelling, “Wait, slow down, I can’t keep up!” and “Look to your left!”). These videos often make me laugh while I’m crying, which is often even better than just crying.
  • Looking at photos of him. Two photos in particular get me: one of him with his son from maybe 12 years ago on a trip to Aspen and a more recent one of him with my daughter on a camping trip. I think these two photos get me because they remind me of the loss our kids have experienced and of how proud he was to be a father to both of them.
  • Opening the drawer I call the “smells like Tom drawer.” This is a drawer in the closet full of T-shirts, towels, and other things that smelled like Tom at one point. He’s been dead long enough that nothing in the drawer actually smells like him anymore, but psychologically, these items feel like relics of his. I open the drawer, hold different items, and snuggle them up to my face as though they do still smell like him. I can remember his smell when I do that.
  • Going to a place where I have memories with him. This can be a place in the house, like the bathroom that he meticulously tiled every inch of, or a seemingly random location, like the alley by our house where I was walking one of our dogs one day, heard something, and turned around to find Tom had followed us in his motorized wheelchair. The Denver Art Museum is a solid trigger for me because we had an amazing outing there after his stroke that is full of tender memories for me.
  • Working out, especially if it’s a cardio-only workout where I can kind of zone out. My elliptical is good for this, and running works, too. There’s some research that indicates that during exercise, our emotions may get processed through our bodies.
  • Getting bodywork, such as acupuncture or massage, done. I think this trigger works similarly to working out, tapping into the mind-body connections.

These triggers have worked so well for me the last few weeks that I’m back to crying every day, enjoying the endorphin fix.

Grief by the Numbers

My husband has been dead for over 13 months. I have been a widow for over 13 months. 13 months, one week, and one day, to be exact. 1.104 years.

I crunch numbers related to his death regularly. I repeatedly do the math on how long it’s been since he died in weeks, months, years. I calculate the percentage of our relationship after his stroke (9%), the percentage of my life that I’ve been a widow (2.12%), how old he would be if he hadn’t died, how long we would have been married if he hadn’t died. I redo my math sometimes daily as if the numbers matter in some consequential way.

I recognize all this calculating as an attempt to make sense of something that doesn’t make sense. The questions the numbers answer are relatively simple and the answers are clean, tidy, and neutral. I don’t have to like that 9% of our relationship involved me being my husband’s caregiver, but it’s a cold hard fact.

Questions like when will this get easier or how long will my heart hurt don’t have neat tidy answers, but how long has Tom been dead? Now that’s an easy one.

Question: When will this get easier?

Answer: Over time.

That’s a pretty useless answer. What can I do with that? And while I know it’s the best answer I’ll ever have, I want to argue with it. What if I do more therapy? What if I take a yoga class? What if I sleep more? But the answer doesn’t get any more satisfying or clean—it remains maddeningly vague.

Question: How long will my heart hurt?

Answer: Forever.

This answer makes “over time” look almost precise. How long is forever, exactly? I can’t seem to find it on my calendar.

Sometimes I calculate what percentage of the day I spent crying or napping or moping. This is more complicated because I typically don’t know what time it was when I started crying/napping/moping. These things sneak up on me and I suddenly realize I’ve been crying/napping/moping. And then I get tangled up in taxonomizing the activities: does it count as crying if I did it while engaged in another activity or do I only count it as crying if it disrupted something? Is it napping if I didn’t actually fall asleep but was merely immobile on the couch for an hour—or is that moping? And then once I have my calculations, making sense of them kicks off another round of absurd questions and judgments. Is crying for 10% of the day acceptable? If so, where is the line between acceptable and unacceptable? If 10% is acceptable, how about 11%? 14%? Surely 20% is too much. Right?

Sometimes the calculations are a shortcut to imagining what might have been. I used to wonder why people would post on social media something like, “Jack would be 87 today if he hadn’t died.” I thought, “But he did die and he’s never going to be 87.” Now I understand that the person posting that is imagining how Jack’s life would have unfolded had he lived to be 87. When I say, “Tom would be 62 now if he hadn’t died,” that’s shorthand for, “And I would have made him a German chocolate cake for his birthday, and we would have had another year of making each other laugh, of him calling my coffee Nectar of the Gods, collecting sword canes (true story), and breaking out into song in random moments.”

Other times the calculations give me strength. I’m not at “forever” yet, but I’ve managed this heartbreak for 13 months, a week, and a day, and I’m sure I can go another day.

The part of me that loves gallows humor wants to write a bunch of word problems like the ones I struggled through in school:

If Elizabeth’s husband has been dead for 13 months and the annual inflation rate is 9.1%, what percentage of time should she expect to spend crying on the average weekday?

No equation is going to make me miss Tom less, but ridiculous word problems will at least make me laugh.

Don’t Be the Grief Police—Please!

The Grief Police is what I call people who feel they can judge other people’s grieving and tell them they are doing it wrong—or sometimes even worse, commend them for doing it well. There’s a faction of the Grief Police specifically dedicated to widows: the Widow Police. Those are the people who feel they can dictate who gets to call themselves a widow, determining that someone who lost their long-term partner but wasn’t married isn’t a “real widow” and the like.

Glennon Doyle’s podcast, We Can Do Hard Things, recently featured a conversation with grief advocate Marisa Renee Lee, author of Grief is Love. The title of the episode, “Why Grief—Like Love—is Forever,” gives the gist of Lee’s philosophy of grief: it doesn’t go away. It may become more familiar, comfortable, and bearable, but it will never go away. But the Grief Police still think they can say when and how grievers should “move on” or “get over” their grief.

Lee’s message that grief is forever resonates with me. I’m now 13 months out from my husband’s death, and most days I do not feel overwhelmed by grief, but I still have the occasional day in which I seem unable to function in any meaningful way beyond napping, moping, and crying. Even days that are not napping-moping-crying days often have a napping-moping-crying component. I still miss my husband terribly every single day.

Lee says “the love that we share with people leaves a permanent mark on our brains,” and people grieving a loss will never “get over it”; rather, they learn to live with the loss.  In my experience, learning to live with the loss happens one day at a time and you’re never done learning. My mother died 40 years ago, and I’m still learning to live with that loss. My husband only died about a year ago, so I have a lot more learning to do there.

Lee emphasizes that grievers need to give themselves permission to “be a mess,” and notes that this is harder to do for some folks than others. I’ve been grateful to be in a relatively supportive work environment for that, but I recently spoke to another widow whose boss told her that after three years, she should be over her husband’s death and not need to take his birthday and death day off from work. Yes, that boss is a member of the Grief Police.

Beyond supportive bosses, there’s an aspect of privilege involved in being able to express your grief at work or in social situations; as Lee says, “Vulnerability requires a sense of safety that is not equally distributed in our society. Some people are too busy, too female, too poor, too Black for vulnerability.” The Grief Police I’ve met are not interested in unpacking issues of privilege or in creating safe spaces for vulnerability.

One of the most heartbreaking Grief Police stories comes from an amazing woman I know whose son died many years ago. Someone told her, “You must never speak his name again.” I like to think we are past that kind of ridiculousness in 2022, but unfortunately, I know we are not. In the widow support groups I belong to, people frequently share stories about being told that they need to stop talking about their spouses who died. The Widow Police tell them that it’s off-putting for potential romantic partners or confusing for children. I think it would be more confusing for a child to see that a flesh and blood human who died is erased from their loved ones’ memories.

Lee points out that one of the best ways to support a friend who is grieving is to let them talk about their dead loved one. I think hearing your dead loved one’s name is magical. Many grief support group meetings begin with each participant introducing them self and saying something about who they are remembering. I love saying, “I’m remembering my husband Tom, who died last year.” Saying his name out loud to people feels concrete. In those moments, he has not evaporated into the ether. He feels present with me. I can never say that sentence without crying, but I’m smiling, too.

I have the same sensation when I go to the bench commemorated to him a few blocks from my house. There’s a small plaque on the bench that reads “Tom DeBlaker, 1960-2021. Audacious life. Indomitable spirit.” Seeing his name on the plaque always makes me smile, and often makes me cry. I often read the plaque out loud when I’m at the bench and sometimes run my fingers over the engraving.

I never tire of hearing his name from other people. His brother texted me last week to say something funny had happened to him that he wished he could share with Tom. Just seeing Tom’s name in the text made me smile—and cry. The smiling and crying seem to coincide regularly.

The Grief Police only notice the crying and deem it awkward, inappropriate, and upsetting to others.  It’s easy enough for me, as a white person with tenure, to dismiss the Grief Police with an eye roll or a curt comment, but folks with less privilege may not have that luxury. It’s up to those of us who do to push back where we can.

How I Make Hotel Rooms Accessible for My Low Vision

I’ve done some traveling this summer and stayed in a variety of hotels in both the U.S. and Europe. I’ve always loved traveling and am excited that travel feels doable now that so many people have been vaccinated against COVID. With my vision impairments, I run into some issues in hotels, so I have come up with a routine I use to maximize my ability to see and be comfortable and safe in my room and the public areas of the hotel.

Room numbers not always visible to me, so I’m now used to putting my face right up to a door to try to find the room number. I can often see that there is a room number on the room doors or right next to them, but I can’t read the numbers because of the artistic font used. I sometimes take a picture of the number with my phone and then make the picture big enough for me to read. The first number I take a picture of is never my room number, but having that one number down helps orient me a bit.

Accessible hotel rooms are typically designed with wheelchair users in mind. Accessible rooms usually have doorways wide enough for a wheelchair, wheelchair access on both sides of the bed, enough room for a wheelchair user to make a U-turn, light switches and thermostats low enough for someone in a wheelchair to reach them, and a wheelchair accessible sink and shower. I have yet to find a room that is really accessible for someone with my kind of low vision without some tweaks.

Every hotel room I’ve stayed in during the past five years has been too dark for me once the sun goes down. I now routinely move lamps around, it they are available, and I’ve even called the front desk to ask if another lamp could be brought to me (it could). I’ve learned the hard way to move lamps around before the sun goes down, when I can still see where the cords are plugged in and where the outlets are in the spot I want to move the lamp to. Sometimes hotel rooms have a writing desk that doesn’t have a lamp on it; that’s the first place I move a lamp to. Hotel rooms often have a comfortable reading chair but no light source near that chair. If I can move a table lamp to a nightstand or dresser that is near that chair, I do, but sometimes that isn’t possible and I have to either call the front desk to see if a floor lamp is available (sometimes one is) or I just have to not use the reading chair.

The next thing I do is find every light switch in the room and figure out which light it operates. Light switches are often the same color as the wall, so I sometimes have to guess where a light switch might be and run my hands along the wall until I find it. Typical places are right inside the door, at the joint of two walls, and near a door frame. Occasionally I have to call the front desk to ask where a light switch is. Usually, the person who answers my call initially says something unhelpful like, “It’s there, I promise.” When I explain that I am vision-impaired, they usually send someone to the room to show me where the switch is. Once, the person who was sent had to admit defeat and say, “I don’t know where the switch for that light is!” Nobody ever found it.

I then walk around to each light in the room and figure out how to turn it on. Many modern light fixtures have switches that are designed to not be obtrusive, which means they are hard to see. I often have to run my hands all over a lamp to find the switch. When that fails, I start running my hands down the cord to see if the switch is on the cord. A few times I’ve had to call the front desk to ask how a particular light works.

I try to do all this before the sun goes down, because when I come back to my room after dark, it’s nice to have some familiarity with how the lights turn on. This isn’t possible if I check in after dark, and then I rely on my cell phone’s flashlight to help me navigate the light switches.

The next thing I do is scan the room for contrast issues. This usually means making sure there’s a light-colored surface for me to put my own dark-colored things and a dark-colored surface for me to put my own light-colored things. I can easily lose a white keycard on a white or light-colored surface, so it’s important to scope out a place to put my keycard where it will be visible to me. I can put down a white washcloth from the bathroom on a dark surface, like a dresser or TV console, and then put dark things on top of it to make them visible. Hotel bathrooms are often white, so I use a black bag for my toiletries. Many rooms have a white tissue box holder in a white bathroom, so I move the tissue box holder to a dark piece of furniture in the room.

Another place where contrast issues can come up is with clever drawer or cabinet pulls that are designed to blend seamlessly into the furniture. I spend a lot of time when I first in a room running my hands over surfaces, looking for pulls.

In one room recently, I accidentally swept something I hadn’t seen off a dark wood desk. I heard the object clatter to the floor and dropped to my hands and knees to pick it up. It was a big dark room phone.

I can’t tweak the public areas of a hotel, so I have to move through them very carefully. Dim lighting is everywhere and I’ve tripped over coffee tables, walked into glass panes, and spent way too long trying to decipher which restroom is for women (in a few places, I never was certain and figured in the age of gender neutral bathrooms, it shouldn’t matter if I go into the wrong one).

If possible, I look at photos of the hotel’s lobby and outdoor spaces online before I go to scope out potential danger for myself. I can enlarge the photos and get a sense of what to look for. For example, I noticed ahead of time that one hotel I was staying in had a very large water feature that blended into a surrounding patio. When I got to that hotel, I walked very carefully over to where I knew from the photos the water feature was and found some cues to help me avoid tumbling into it during my stay.

Once I’ve done all that, I can commence the part of staying in a hotel room that I’m really good at: relaxing.