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.

Disabled Folks Aren’t Always Looking for a Cure and You Should be OK with That

I’m actually pretty ok most of the time with my impaired vision. I gave up driving in 2019. I read with my eyes a lot less than I used to. I write with my eyes a bit less than I used to. I’ve been not driving for long enough that it feels completely normal to me to rely on public transportation and rideshares. Not being able to make sustained eye contact with people in conversation is trickier, and while adapting to reading and writing less with my eyes has been challenging, I am getting better, which makes me think it will eventually feel comfortable to me.

My impaired vision seems to matter much more to other people than to me. Many people ask about my vision when they greet me, which I take as a way to acknowledge that they remember I have impaired vision and they hope it isn’t negatively impacting me. These inquiries don’t bother me at all. I am also not bothered at all when people don’t ask about my vision, which to me acknowledges that impaired vision is part of who I am, the same way being short or having big hair is part of who I am and doesn’t need to be commented on.

What does bother me:

  1. When that inquiry turns into a grilling about what I’ve tried or researched to “fix” my vision, or someone aggressively suggesting I contact the doctor they know. I spent years getting my diagnosis and I spend a lot more time than the average person with vision specialists just to maintain the vision I do have. I don’t want to put more time and energy into it. I have made a deliberate choice about how much time and energy to put into my vision issues and I don’t appreciate having that choice challenged by someone who has not experienced disability—and it seems to always be able-bodied folks who do the grilling.

Establishing boundaries around the time and energy I put into this is not “giving up.” It’s not weakness. It’s not laziness. It’s a deliberate choice I’ve made that takes strength to defend on a regular basis. The vast majority of the time, my vision issues don’t keep me from doing what I want to do. For example, in early June, I traveled by myself to a country I had never been to before that is not very accommodating to folks with disabilities. My vision issues made the trip a bit more complicated than it might have been for someone with “normal vision,” but it was absolutely doable for me. I am very happy with my life and don’t feel like my vision impairment makes my life worse.

What does make my life worse is being judged by others for not “doing everything possible” to fix my vision. When I tell someone who is grilling me to back off, they often respond with, “Well, I just thought you’d want to do everything possible.” Everything possible seems to be a euphemism for making my vision impairment the sole focus of my life. No, I would like to spend my limited time on earth doing much more interesting and satisfying things.

  • When the news that my vision has not improved at all is received ruefully. I’ve seen people be visibly deflated when they hear my vision hasn’t improved. Because I’ve stopped hoping for improvement, the lack of improvement doesn’t bother me, and it seems to me, that if it doesn’t bother me, it shouldn’t significantly bother someone else. But neoliberal culture values constant improvement, which means a lack of improvement must be cause for disappointment.

These two types of responses put the focus on fixing a problem and render invisible the work that matters to me: my adapting to my impaired vision, learning to work through and around the barriers in the world, and living the best life I can with the vision I have.