Wondering When & How to Disclose Disability with Colleagues

I have now gone 19 days with double vision. There was one day in there where my vision was double for only an hour or so, but the rest of the days, I’ve been lucky to have a solid hour of time when my eyes are really functioning normally.

Double vision makes it much harder for me to pass as not disabled, so the question of whether and how to disclose my disability has been more pressing the last few weeks. I mentioned last week that I added a disclosure to my email signature. This week I wondered whether I should disclose to a group of 23 colleagues who participated in a two-day workshop I facilitated.

The decision of whether or not to disclose to a group of people is never a simple one. I’ve mentioned before Annika Konrad’s concept of access fatigue, which is the exhaustion disabled people experience from having to constantly educate others about their disabilities and needs, enable others to feel helpful even when they are doing the very barest minimum to make something accessible and/or doing it very grouchily, and balance the costs of asking for access with the benefits of actually getting it. I hear often hear people disparage folks who disclose as “making excuses” or “looking for attention.” Even though I know I am not doing those things, it weighs on me that I will likely be seen as doing those things by some people.

I have gotten into the habit of disclosing my disabilities to my students on the first day of class. When I did that for the first time years ago, I received an outpouring of positive support and gratitude from my students. Many of them told me that seeing an authority figure disclose a disability helped them feel more welcomed and included in the class. Some of those students had disabilities themselves, but many didn’t and simply felt that having a professor who was open about being disabled created a culture of acceptance. In all the years I’ve been disclosing to my classes, I’ve never had any negative reactions, so for me, it’s a no brainer to disclose to students. I’ve had similar positive responses in the Writing Center I direct from the staff. In both these cases, though, I have a lot of privilege: in the classroom, I’m a tenured professor. In the Writing Center, I’m the boss.

My position is different with colleagues. We are peers in a sector in which being overworked and burned out or close to it is almost valorized. If it looks like I am making excuses and doing less work than they are, they could see me as someone who isn’t pulling their weight and therefore creating more work for them. Before the workshop, I had communicated by email with the participants several times, so they had all seen my email disclosure, although I don’t know how many people actually read my signature or remembered it by the time the workshop began on Monday. I decided not to make any additional announcements about my impaired vision, but several times on Monday and Tuesday morning, I found myself awkwardly trying to pass for someone with unimpaired vision. Then I did a presentation on Tuesday around midday, and that’s when I very much regretted trying to pass.

I got to a part of my presentation where I had planned to read a dense paragraph of text. It simply wasn’t possible—the words and letters swam before my eyes and nothing would come into focus. I said to the audience, “I’m sorry, I’m experiencing double vision that is making it impossible to read this,” and a participant immediately said, “I’ll read it” and did so.

I got no sense of any negative judgment from anyone about this incident, but I wish I had not apologized for my double vision. It is very important to me to not apologize for my disability because it is not mine to apologize for. I prefer to thank people for helping me rather than apologize. I also prefer to disclose in ways that frame disability as normal, and I’m not sure that the way I handled the situation did that, although I do really like that my colleague jumping in to help positioned accommodating on the fly as normal.

Although I’m not happy with how I handled this situation, I’m not sure what I would do differently if I could have a do-over. Maybe simply deleting the “I’m sorry” from what I said, since that’s the part that bothers me. I’m not sorry for having a vision impairment. Or perhaps I could have asked at the outset of my presentation for a volunteer to read the text when I got to that part of the presentation.

Ideally, I’d like to have a default way of handling this type of situation with colleagues so I don’t have to think about it whenever it happens. My default with students and the Writing Center staff is to disclose explicitly and immediately, which eliminates the need for me to make a decision about when and how to disclose. I want that same simplicity with colleagues.

Living with Low Vision

One aspect of my vision impairment that makes it difficult to explain to others is that there isn’t one neat and tidy condition or issue that I have. “Low vision” is a generic term for a variety of conditions that result in impaired vision that can’t be corrected with glasses or surgery. My low vision is caused by a combination of conditions that probably could be corrected with glasses or surgery if they were my only condition, but the combination causes complications.

Here’s what I have been diagnosed with, in order of most common to least common:

  1. Nearsightedness. Lots of people have this and it is typically corrected with glasses. With glasses, I can get a 20/40 correction.
  2. Astigmatism. This is another condition many people have and it can typically be corrected with glasses. Mine is severe enough that I can’t get a perfect correction.
  3. Dry eyes. Another common condition. I use prescription eye drops twice a day and non-prescription eye drops throughout the day, but still, my eyes feel scratchy most of the time.
  4. Presbyopia. Difficulty seeing things close up. This is a common condition that causes folks my age and older to need reading glasses.
  5. Nuclear sclerosis. This is a form of cataract that many people my age and older get. It’s not bad enough yet to warrant surgery. It makes everything look a little cloudy to me.
  6. Photophobia. Sensitivity to bright light. Can be mitigated with sunglasses and a hat with a brim, but because of my low contrast sensitivity (see #8), I am even more dangerous with sunglasses than without.
  7. Hypertropia. This means my eyes don’t focus in the same spot. It is somewhat corrected by prisms in my glasses, but the correction isn’t perfect, and when I’m tired or I’ve been reading or writing a lot, my hypertropia gets worse, which leads to double-vision.
  8. Low contrast sensitivity. This is the condition I usually mention when people ask me about my low vision because it’s the one that’s not common and fairly easy to explain. The “not common” piece is important because if I say I have nearsightedness or astigmatism, people dismiss my claim to be visually impaired immediately because so many people have those conditions. The low contrast sensitivity is what makes it hard for me to distinguish between things that are similar colors, such as sidewalks, streets, and people in dark clothing. To me, it all looks like a weird grayish blob that goes on and on. There is no correction, but good lighting and being well-rested helps—but I have to be careful that my good lighting isn’t too bright, because then my photophobia kicks in and it can stress out my eyes and make the auto-immune condition (see #9) worse. It’s the low-contrast sensitivity that makes it dangerous for me to drive (I haven’t driven in several years).
  9. An auto-immune condition that makes my eyeballs swell up and change shape enough that the prisms in my glasses that correct the hypertropia are no longer able to correct it, resulting in double-vision. The swelling is also uncomfortable and sometimes painful. There is no fancy name for my auto-immune condition—it just seems that my body sometimes acts like it’s allergic to my eyeballs. I don’t seem to have any other symptoms.

I also have halos around the edges of my vision (undiagnosed so far). On top of all this, I have another condition that isn’t actually a vision impairment but it seems like one: I have prosopagnosia, also knows as face blindness. I see faces just fine, but I can’t remember them—even my own face or my daughter’s face don’t stay in my memory. I recognize people by their gait, voice, glasses, clothing, or hair.

The combination of vision conditions, especially the last three, is what, in my case, constitutes low vision. Any one or two of those conditions alone might be just a “normal” vision problem, but the combination of hypertropia that gets worse when I or my eyes are tired, low-contrast sensitivity, and the auto-immune condition push me firmly into low vision territory.

I am more likely to experience double vision when I’m tired or I’ve been reading or writing a lot. I typically experience it several times a week in the evening, after a reading- and writing-heavy day, but at the end of the semester or when I’ve really been reading and writing intensely, I can have double vision that lasts for a few days. Right now, I am on day 11 of having double-vision. By experimenting, I’ve found that I can get about three hours a day of reading and writing in if I take breaks every 20 minutes. During my breaks, I do some eye exercises, use eye drops, and sometimes put a hot compress on my eyes. After about 15 minutes of a break, I try to read or write again; sometimes my eyes tell me they are good to go and sometimes they tell me to keep on breaking.

During the times when I can’t read or write, I can sometimes get some work done using voice dictation in words and the accessibility tools on my phone, but because I don’t use those tools regularly, I’m not very efficient with them yet.

I’ve also learned that my vision goes double from looking at someone during dinner, attending Zoom meetings, and watching TV, so it’s not just reading and writing that tire them out.

Over time, I’ll get more fluent with the voice dictation and accessibility tools. For now, I have added this note to my email signature:

PLEASE NOTE: Due to vision issues, I am relying on voice dictation and am unable to thoroughly edit or proofread right now. Please read with generosity. Thank you.

It’s important to me that I’m not asking for forgiveness or apologizing for my vision.

The complexity of my low vision is why it frustrates me when the retina specialist I go to (because with all my conditions, I’m at high risk of a detached retina) says, “Well, in a few years when your cataracts are worse, I’ll do surgery and restore your vision.” No, buddy, you won’t restore my vision. You’ll remove my cataracts and maybe reduce my nearsightedness, but I’ll still have seven vision conditions—and oh, yeah, there’s a possibility that your amazing surgery will kick my auto-immune condition into high gear.

Or when someone tells me I should try acupuncture, or a B12 supplement, or yoga, or whatever. Or when they suggest that I’m using my low vision as an excuse for get out of doing something. I’ve had to work really hard to eek out a few hours of work every day for the past 11 days. It doesn’t feel to me like I’m getting out of anything.

Like a lot of folks with disabilities, I just want people to believe me when I say I have a complicated vision situation and then move on.

Check Back on Tuesday

I’ve been publishing my blog posts on Thursday or Friday, but I’ve been thinking about shifting the publication day to Tuesdays. I wasn’t quite ready to make the shift, and then my eyes intervened: I’ve had double vision for 8 days now, making it impossible for me to get something ready to post this week. The double vision seems to be improving a bit, so I am optimistic about being able to get something ready to post by Tuesday.

Thanks for checking in–and please check back next Tuesday!

Grief and the (Un)Expected Death

A year before he died, my husband had a massive stroke that left him paralyzed on one side, severely brain-injured, and with a long list of complicated health issues. He ultimately died after the fourth of a series of surgeries on his skull. A few people, upon learning of his death, said something to me along the lines of, “Well, it’s not a surprise,” or “You expected this, didn’t you?”

The thought that he could die was in the back of my mind ever since he had the stroke, but did I expect my 61 year-old husband, who had been strong and healthy his entire life and was working his ass off in PT, to die a year later? No. I knew his health was precarious and the surgery he was undergoing came with risks, but that didn’t make his death any less surprising for me. When people suggest that I wasn’t surprised, it feels to me like they are minimizing the impact of his death. When they suggest that I should have known he was going to die, it feels like a negative judgement on my grief.

Whether or not the death of a loved one comes as a surprise does not make the grief a survivor feels more or less profound. People who lose a loved one to a protracted terminal illness knew their loved one would die and that might allow them to make arrangements that ease some aspects of the death, but it does not make the loss less painful. The loss of a loved one is the loss of a loved one, regardless of the amount of surprise involved.

The grief for a death that is sudden versus the grief for a death that comes after a long decline or a terminal diagnosis can’t be measured or compared. How can I compare the sudden death of my mother when I was 12 to watching my husband wither away over a period of a year? The two deaths cannot be compared and I see no benefit to me to compare them. No two losses are the same and they can’t be measured against each other.  

I’ve talked before about the tendency folks seem to have to rank, measure, and score grief. I think categorizing things helps us make sense of them, but 10 ½ months into grieving my husband, I have not found a categorizing system that makes my grief easier to experience. I have found much to appreciate about my grieving experience, but it has all been painful. I think people want to believe that a loss that is less surprising is less painful, but with or without the element of surprise, the loss of a loved one hurts.

Since everyone dies, it could be said that no death should ever be a surprise. And yet, there seems to almost always be an element of surprise—the timing, the circumstances, or something else. I may not have expected my husband to live forever, but I did not expect him to die that day. I was surprised by so many things: that my last conversation with my husband was in a hospital; that he was only 61; that we had only 12 years together; that someone could never wake up from a surgery that was technically a success; the clarity I felt about removing my husband from life support; the sense of honor I felt holding him while he took his last breath; that I would never again sleep in the same bed with him or refill his prescriptions or dress him or laugh with him.

There are many things that could have made his death harder on me: had we not had financial stability or health insurance; had I not had solid relationships with his family members; had our marriage been complicated; had we not talked at length about the types of medical interventions we might want to keep us alive in dire circumstances. But nothing could have made his death easy for me. I may have been less surprised by his death than by my mother’s, but I did not expect it. I may have had in the back of my mind the idea that Tom could die, but that didn’t make the loss any less devastating to me.

I think the idea that an expected death makes grieving easier is based on a misunderstanding. Grief is about loss, not about expectations being met.

Moving On versus Moving Forward with Grief

I was working from home earlier this week when suddenly the dogs flew into a barking frenzy, jumping at the front door urgently and howling. They often get excited when someone is at the door, but this was different—there was a frantic quality to their barks and they were more exited than usual. I looked out the front window to see what they were reacting to and there was a white Sprinter van parked in front of the house. I found myself mid-sob before I even fully comprehended what was happening.

My husband drove a white Sprinter van. Before his stroke, seeing a white Sprinter van pull up in front of the house meant Tom was home and the dogs and I were about to be showered with attention. Tom never came into the house without kneeling to pet and talk to the dogs and then hug and kiss me.

Even ten months after his death—a year and ten months after his stroke—the dogs and I react viscerally to a white Sprinter van in front of the house. Will this response ever go away? I don’t know, and I’m not even sure if I want it to. I appreciate the unexpected reminder of the pure joy I felt every time he came home.

There’s a lot of talk in the grieving community about the difference between moving on and moving forward. When people talk about moving on, they typically mean getting back to the way things were before the death. The goal of moving on is to put the loss behind you and continue living life with the same mentality as you did before the loss occurred. People indicate a moving on mentality by

  • using phrases like “get back to normal” or “back to the way things were,” as in, “When do think you’ll get back to normal?” or “I just want things to be the way there were before.”
  • suggesting that the work habits, hobbies, and social commitments that felt right before the death should be resumed without modification.
  • approaching grieving as a phase with a start and end point and a progression through known stages like “anger” and “denial.” Saying “Are you still sad?” or “shouldn’t you be past that stage by now?” are markers that someone has a moving on mentality about grief.
  • believing that grief that lingers beyond that grief period is abnormal, disordered, and dangerous.

The goal of moving forward, in contrast, is to integrate the loss into your life so that grief isn’t necessarily something you stop experiencing but you learn how to carry it with you into your future. People indicate a moving forward approach by

  • acknowledging that “getting over” a loss isn’t realistic or even desirable.
  • recognizing that activities that the grieving person enjoyed before the loss may not be the same ones that bring joy and comfort after the loss.  
  • understanding grieving as an ongoing, lifelong process that begins with the loss and has no endpoint.
  • resisting the urge to label sadness over the loss problematic, even if it occurs years later.  

Moving on would mean having no reaction to a white Sprinter van parked in front of the house. Moving forward means saying to myself, “That white Sprinter van in front of the house reminds me of how happy I always was when Tom got home,” and acknowledging whatever feelings come up.

I think people have a mistaken notion that one way to judge how well someone is coping with loss is by how quickly they get back to being the same person they were before the loss. I think sometimes the admonition against making big decisions in the first year after a significant loss is part of the impulse that people should move on after loss and if you sell your house or change your job, how can you go back to who you were? I understand why the people around us want us to go back to being the person we were before the loss—they loved us as we were and they may perceive that if we weren’t suffering in the past, to get back to how we were means no more suffering. But we can’t possibly be that person again. We can be a person who isn’t suffering, perhaps, but not the same person we were before.

Well, you can’t go back to who you were, whether you make big decisions or not. Grief changes a person—the person you were before no longer exists.

This is why I prefer the concept of moving forward. I am moving forward when I allow myself to be swept up for a moment in intense emotion when I am reminded of the rich life I had with my husband, or when I take a mental health day off from work to give myself time to feel sad about an anniversary. I am moving forward when I accept that while others may wish for me to resume being who I was before I was widowed, they won’t get their wish. They may express disappointment about that, but their disappointment is not my responsibility.

My responsibility is to move forward, to learn how to carry the grief and allow it to change me.

Grieving advice that sucks: “Don’t make big decisions for a year”

One of the more useless pieces of unsolicited advice I’ve gotten regularly since my husband died is “Don’t make any big decisions for a year.” I’ve been told this by friends and virtual strangers, people who have been widowed and people who have not.

I find it to be completely unhelpful. For one thing, what counts as “big”? There are days when deciding what to have for dinner feels like a big decision—and that was true even before my husband died. For another, it’s really obnoxious, I think, to assume that everyone has the luxury to take a year off from making big decisions.

In trying to understand what counts as a “big” decision, I found the same general guidelines over and over on the internet: don’t get rid of anything, have a baby, get married or divorced, retire, quit your job, move, or make a major purchase. Given these parameters, I’m considering a “big” decision one that could haunt me if I mess it up. (I originally had as my working definition “a decision that could change the trajectory of my life,” but upon reflection and remembering how trajectories work, I realized that any decision could change a life trajectory.)

The logic behind the advice is that “big” decisions require one to be in a frame of mind that grief makes impossible. But here’s a reality check: we make “big” decisions all the time under terrible conditions. Here’s another reality check: grief doesn’t end after a year.

When someone is widowed, big decisions must be made. There’s no escaping it. What to do with my husband’s body, how to deal with intimidatingly large bills coming in related to his death, and what to do with his many belongings that filled the house and garage were decisions that could not be put off for a year. And what about widowed people who have to move because they can’t afford their rent or mortgage payments without their dead partner’s income, people who lose their jobs because grief renders them unable to continue working, widows who are pregnant when their partner dies, and other very common situations?

As with pretty much all one-size-fits-all advice, I find the advice to not make big decisions for a year to be complete bullshit.

I’ve made several decisions since Tom died that felt big, including  

  • giving away all sorts of things, including his tools, clothing, and motorized wheelchair, and quite a bit of furniture. I’ve also shredded most of his personal papers,
  • having major surgery,
  • hiring a landscaper to redo the back yard,
  • making several large-for-me charitable donations,
  • booking trips to Europe, South America, and Antarctica,
  • applying for a sabbatical that outlines a new research area for me, and
  • committing to a big, international, multiyear research project.

For the most part, making these decisions felt good. It gave me a sense of control and helped me imagine a future without Tom. Some of these decisions could have been put off; for example, I could have easily tabled travel plans for a year. But for me, making those travel plans was actually key in helping me feel like I was moving forward with my life. Having plans on my calendar gave me something to look forward to and forced me to confront head-on my fears about traveling to new places with a vision impairment and no partner to help me. Many people told me to hold off on making the travel plans, which are expensive and force me into the unknown.

But you know what? I hadn’t asked any of those people for their input. This commonly given advice, like so much advice, is typically unsolicited. I think people mindlessly repeat what they have heard without considering how helpful it is. I remind myself when I hear it that these people are either legitimately trying to be helpful or so uncomfortable with grief that they are just filling conversational space with a tepid platitude.

In contrast, a few people, when I asked for advice, told me something along the lines of “take all the time you need to make that decision” or “you don’t have to make that decision in a hurry.” These words honor the individual nature of decision-making.

As someone who has often struggled with decision paralysis, I’ve been happy to notice that grief makes priorities clear in a way that can actually help me make decisions. Perhaps the advice should be to make more big decisions while grieving.

Swedish Death Cleaning

I first heard about Swedish death cleaning when Margareta Magnusson’s book The Gentle Art of Swedish Death Cleaning came out in 2018. I have always disliked clutter and felt better when my living spaces feel ordered, and the concept of death cleaning—getting rid of what you don’t need while you’re still alive so your loved ones don’t have to do it after you die—felt like a cooler, trendier way to talk about my appreciation for being organized. Eyes glaze over when I say, “I love organizing!” but when I say, “I’m into Swedish death cleaning,” people perk up with morbid curiosity. 

The marketing copy for Magnusson’s book describes Swedish death cleaning as “A charming, practical, and unsentimental approach to putting a home in order while reflecting on the tiny joys that make up a long life.” I don’t know about whether it’s charming, but it is unsentimental in that it dispenses with the emotion that often drives me to hold onto things I don’t really need or even want. I often hold onto things out of foolish optimism—for example, I’ll think, “I don’t have time to read this interesting looking book now, but I’m optimistic that I will during the summer.” By the time summer arrives, I have a stack of 20+ books to read, and even under the best of circumstances, I may actually read half of those. I’ve often joked when putting leftovers in the fridge, “I can throw this out now or let it sit in the fridge for two weeks and then throw it out.“ Adopting the philosophy of Swedish death cleaning means throwing it out or finding another home for something now rather than in two weeks. It means facing the reality that I will NOT be able to read all the books I want to over the summer and either not buying them “in preparation” for summer or giving them away when they are gifted to me.  

The real practicality of it became salient when my husband died and I had to go through all his things. He was not much of a packrat, so he had less to go through than many people his age, 61, might have. He left behind clothing, shoes, a few books that carried sentimental value, tools, motorcycle stuff, rafting/camping stuff, art/décor, minimal papers (blueprints from jobs he worked on, instruction manuals), electronics, knife sharpening stuff, just a few photos and mementos. Even with Tom’s fairly minimalist ways, going through his things after his death was tough. I was brought to tears by an old pair of reading glasses and a keychain that I suspected had sentimental value to him even though I didn’t know why. I find myself holding onto those items because I feel I “should.” I wonder if the reading glasses he held onto were special to him—or did he just not ever get around to giving them away? Thinking about my daughter and stepson eventually trying to decide what to do with the mysterious reading glasses and keychain they find in my stuff when I die helps me recognize that getting rid of those things now makes sense. 

Swedish death cleaning serves several purposes: 

  1. It relieves survivors of the guilt of getting rid of things. I grew up in a family that dubbed everything any of our ancestors touched “family heirlooms” and my sister and I lugged around many broken and meaningless family heirlooms for decades. It was a relief when I finally realized some of the family heirlooms were just things my father didn’t have the heart to throw out when his own parents and wife died. That realization helps me realize I really do need to get rid of Tom’s old reading glasses and keychain—or make an effort to learn the stories behind them and preserve them as meaningful family heirlooms. 
  2. It creates a tidier, more spacious working and living environment. A towering pile of books I mean to read makes me feel a touch of guilt every time I see it, so instead of having a “to be read” pile, I treat books I haven’t read yet as decor items and put them where they look good. While I am vehemently against the whole “books as nothing but decor” trend, I am even more against feeling bad about not having read a quantity of books in a summer no one could read in five years. Having the books serve a purpose, even if it’s just lookin’ purdy, makes me feel more peaceful and in harmony in my living space and campus office (yes, there were “to be read” piles at work and at home). 
  3. When I die, my daughter and stepson will have less to deal with. When someone dies, going through their belongings and deciding what to do with the clothing, the books, the mementos—it’s tricky. It’s not simply a matter of packing things up for Goodwill. Without necessarily knowing the providence of each item and its meaning to the dead person, it becomes an exercise in trying to read the mind of someone who’s not around to provide insight. Is it just a T-shirt or is it a souvenir from a trip that changed their life? Is it a book that was meaningful to them or one that they never even read? Better to get rid of the things I don’t love now and spare them the emotional detective work later. 
  4. It makes the finitude of life more tangible. “Finitude of life” is a phrase I got from Oliver Burkeman’s amazing book 4000 Weeks, which is marketed as a time management book but is actually a philosophical treatise on the reality that we are all going to die, no matter how cleverly we hack our time. Thinking about my own death isn’t nearly as upsetting as you might think. I’ve always marveled at the light, floaty feeling I get in shavasana, the yoga pose whose name translates from the Sanskrit as “corpse pose.” Acknowledging that I just won’t live long enough to read all the books, travel to all the places, and do all the things actually relieves me of the pressure to always be ticking something off my list. Earlier this week, I recycled four issues of a magazine I love because I realized I was not ever going to have time to read them. It was the equivalent of throwing out the leftovers that will never be eaten, bypassing the time consuming steps of packing them into Tupperware and rearranging the fridge to accommodate them. Once the magazines were in the recycling bin, I was immediately relieved. No more guilt about not reading those issues! 

The concept can be applied to much more than just material stuff. People who are cluttering my life, beliefs that don’t serve me—they can all go. I’ll write more about those advanced Swedish death cleaning moves in a future post. 

It turns out I am living life pretty well

I’ve seen my grief therapist almost every week for nine months now. She’s asked me periodically if I’m feeling any anger and my answer has always been no. I’ve felt profound sadness, disbelief, and fear. I’ve felt some frustration and irritation, but nothing I would call anger.

Until this week. Anger arrived on Wednesday. I noticed it creeping up on me the day before when an email chain I was on suddenly seemed outlandishly stupid to me and I sent a pissy response. The anger simmered at a low level, but I could ignore it easily enough. Then on Wednesday, I felt the anger building up in intensity, starting in my stomach, moving up to a pressure in my chest and culminating in a fuming, throbbing headache. I was so angry that I ended my class 15 minutes early because I couldn’t think straight. I don’t think I’ve ever ended a class 15 minutes early in my entire career. That’s how blinding my anger was.

I will post something about the anger in the coming weeks, after I have some distance from it. Today I want to talk about how struggling with the big emotions I’ve been feeling since my husband’s stroke and then a year later, his death, often make me feel unable to participate much in life. I don’t keep up on the news, I don’t clean my house, I nap between meetings—in short, I take a laissez faire attitude toward most everything. The story I tell myself then is that I’m doing nothing, letting life pass me by.

This week, when I started telling myself that, I decided as an experiment to write down the things I have done since my husband died, and gosh, it turns out that I haven’t exactly done nothing:

  • I got out of bed and put on big girl clothes, including an actual bra, almost every single day. There have been many days in which I napped for most of the day, but I did it in a complete outfit and on the couch, so even on those days, I can claim that I got out of bed and got dressed.
  • I cooked real food at least once a week. There are lots of days when I just have no appetite and no energy to cook, but I have managed to make myself a homemade meal at least once a week and often more than that.
  • I took good care of myself. I worked out and journaled nearly every single day. I made doctor and dentist appointments I had put off while being Tom’s caregiver. I got massages. I met with a grief therapist nearly every week. I attended ten widow support group meetings.  
  • I walked the dogs every day. Some of the walks were on the short side, just little maintenance walks, but most were good walks, and we often stopped at the bench that commemorates Tom. Sometimes I even played with the dogs on their walks.
  • I spent quality time with my daughter, my sister, my nephew, my mother-in-law and her husband, my brother-in-law and his wife, my stepson and his partner, and several good friends.
  • I finished and sent out two memoir essays. One has been accepted for publication and I haven’t heard back about the other one. Relatedly, I participated in a weeklong online writing retreat, five weekend DIY writing retreats, and a four-week online writing course; I attended and participated in 12 online writing workshops; and I joined a writing group that meets every three weeks and have participated in three meetings.
  • I planned a celebration of Tom’s life that I think captured the essence of who he was and why he is so deeply missed. I also had a bench commemorated to him at the park near our house and scattered some of his ashes in Oregon, one of his favorite places.
  • I completed the probate process with/for/on Tom’s will. (I have no idea what preposition to use there, which shows how little I understand legalese.)
  • I had and recovered from major surgery.
  • I prepared for and won an appeal of my health insurance company’s denial of a $42,000 claim related to Tom’s stroke. When the claim was first denied, I thought the insurance company had just made a mistake, but then my first appeal was also denied and I began to worry. I was certain I would need to hire an attorney, but I handled the second-level appeal myself, which was a ton of work.
  • I took four trips by myself and made plans to go to Europe this summer by myself.  
  • I bought original artwork at an arts festival. The piece I bought makes me smile every day.
  • I attended and participated in Buddhist meetings almost every week.
  • I read five books and am almost done with a sixth.
  • I watched the entirety of Schitt’s Creek.
  • I filed my taxes.
  • I remembered birthdays, anniversaries, and other important dates of loved ones.
  • I blogged almost every week.

Even at work, where I have significantly underperformed,

  • I applied for and was granted a sabbatical for the spring 2023 semester.
  • I revised and resubmitted an article that will be published this summer.
  • I collaborated with two colleagues on an edited collection of scholarly essays.  
  • I attended my first conference since the pandemic began.
  • I formed a committee to explore creating an interdisciplinary disabilities studies minor.

This list helps me see that the story I tell myself about being so sapped by grief that I can’t do anything is just not accurate. It is true that I haven’t kept up with the news or cleaned my house. But look at what I have done! I certainly don’t want to imply that a long list indicates a life well-lived, but I do frankly find value in every single item on this list. It actually is, for me, indicative of a life being well-lived, not because of the number of items on it but because every item on it is aligned with my values.

I suspect many of us can be pretty hard on ourselves when we are in the throes of emotional turmoil. I humbly suggest that the next time you feel like you’re doing nothing with your life, you make a list of what you are doing. You might be surprised by what it reveals.

Peer Mentoring Widows

In the early days after my husband’s death, I was hungry to talk to other widows close to my age. I had just turned 52 when Tom died and off the top of my head, I could only think of one other person I knew who was widowed around the same age.

That person was a Facebook friend, a professional acquaintance I didn’t know well at all but I was aware from his Facebook posts that he’d been widowed around the beginning of the pandemic. I messaged him through Facebook and he responded immediately. We met for a cup of coffee and he told me about his experience of being a youngish widower. It made me feel less alone and freakish to sit with someone else who had been through the experience of losing their partner at a youngish age. It reassured me that people our age could assemble a meaningful life after losing the love of their life.

A few days later, my dog walker put me in touch with a friend of hers about my age who had been widowed for a few years. That other widow became a lifeline for me. We met for coffee, went for walks together, and texted regularly. She was able to commiserate with me in a way that only another youngish widow could. Being further along in the experience of being a widow, she was also able to offer guidance about how I might deal with upcoming milestones. She helped me feel normal when I found myself completely unexcited about upcoming holidays or angry about going through the many post-partner death bureaucratic requirements.

I also had two neighbors, one who was widowed very young and another who was widowed when she was a little older than me, come by to express condolences and remind me that they understood. Although I didn’t talk extensively with either of them, knowing they were nearby and open to talking to me was a constant reassurance. Every time I saw them in the neighborhood, it was proof that people survive the turmoil and upheaval of being widowed.

The widow friend my dog walker connected me to told me about widow support groups on Facebook. There seem to be hundreds of them, some focused on widows in specific geographic areas, some devoted to widows of particular religious affiliations, and others organized around interests or simply living with loss. I immediately joined widow groups oriented toward being in Colorado, travel, and gallows humor, as well as a few more open-ended widow groups. While I am not an active poster in any of these groups, reading the posts of others gives me perspective and reminds me that there are an infinite number of ways to experience and respond to grief—and at the same time, there are some constants: it absolutely sucks, some people in your life won’t be supportive, some people will be surprisingly supportive, pets usually help, and grief isn’t linera.

I also devoured memoirs by widows, starting with Joan Didion’s The Year of Magical Thinking and Abigail Thomas’s What Comes Next and How to Like It. Didion’s memoir helped me understand some of the weird memory gaps I had in the early days as normal. What I appreciated most about Thomas’s memoir was the grim humor. (I’ve always gravitated toward dark humor, and it feels to me like being widowed offers some fantastic opportunities for it. While death isn’t funny, it is kind of hilarious that we act like death isn’t natural. What’s more natural than death?)

The experience of being widowed is disorienting and knowing others who have gone through the experience has helped orient me to this strange new world, as has being able to read about or hear about the experiences of others.

I’m now 9 ½ months out and have been widowed long enough that people are starting to reach out to me to orient newer widows. In a weird way, it feels like getting a promotion, like recognition for a job well done. To be sure, I still flounder as much as I did at the beginning, but I do it with the confidence that there is no other way to do this widowing thing. That is one lesson I’ve learned through my conversations with other widowed people, the memoirs I’ve read, and the Facebook groups I’ve lurked on.

I’ve spoken to two newer widows recently, who looked to me for some sense of orientation. It’s like being an ambassador to a place no one wants to be. Nobody gets here on purpose and we arrive with a metric fuckton of baggage, none of which prepares us for the experience. Knowing how much it helped me to have some relatable guides, I feel quite honored to take on the responsibility for others. I am not sure if my ethos as an ambassador is more optimistically grim or grimly optimistic, but in any case, I do feel oddly well-equipped to take on the responsibility of metaphorically holding another widow’s hand through the disorientation.

All the widowed people who made themselves available to me were incredibly generous to me and I sometimes wondered why. Now I get it. When an acquaintance reached out last week and apologetically asked if they could connect me to a newly widowed person they knew, I brushed aside the apology. I was honored to help. I have become a master of saying no to all sorts of requests since Tom’s stroke, but supporting another widow is something I am deeply honored to do. The loss widows feel is not more or less than the loss others feel when someone dies but it can be more disorienting. When you are used to the constant contact a partner offers; consulting them about meals, child or petcare, and all manner of household matters; and assuming their presence in every vision of the future, the loss touches every aspect of your life. Going to the grocery store, opening the mail, being in your home . . . it all triggers big feelings that other widows instinctively understand.

It feels good to be able to put those big feelings to use.

Say “uses a wheelchair” rather than “in a wheelchair”

After his stroke, my husband used a wheelchair to get around. The stroke left him paralyzed on his left side and although he was able to walk a few steps with a lot of effort and sometimes with assistance, getting around in a wheelchair was more efficient and less tiring.

More efficient and less tiring, but still a lot of work. The stroke destroyed a large portion of his brain and so he spent hours every week in physical therapy and then on his own working to retrain his brain to coordinate movements that used to come naturally and to recognize signals from parts of his body his brain had forgotten. To learn to sit upright in the wheelchair, he practiced sitting up straight in front of a mirror, developing core control, noticing when he was slumping to one side and using trial and error to activate the muscles necessary to straighten himself out. Once he was able to sit up straight in the chair, he had to learn how to get from the bed or another surface to the wheelchair, how to transfer his weight in ways that wouldn’t potentially cause a fall or injury, and how to work as a team with a person assisting him (that was usually me). He had to train his brain to remember to check that the chair’s brake was on or off and to make sure his paralyzed left arm wasn’t in a position where it could get tangled in the wheel or smashed against a wall if he rolled too close to it.  

To get around in the wheelchair, he had to learn to maneuver around people, objects, obstacles, pets, cords, divots in the sidewalk, and obstructions that a person with two functional legs could easily negotiate by straddling, hopping, or stepping over. The world is built for ambulation on two legs; successfully using a wheelchair to navigate a world not built for it is much more complicated than walking.

I know how much effort it took Tom to get around with the wheelchair and it makes me wince to hear that immense effort swept aside with a common phrase: “He’s in a wheelchair.”

My husband’s physical and occupational therapists, his doctors and nurses, his family and friends, used this phrase regularly. Every time I heard it, I winced a little. It minimizes everything about the human being sitting in the chair. It puts the focus on the machinery of the chair, perhaps the requirement of a caregiver or attendant. It renders invisible the person sitting in the chair.

Notice how differently these two sentences hit you:

  1. During the last year of his life, my husband was in a wheelchair.
  2. During the last year of his life, my husband used a wheelchair.

In the first sentence, my husband does nothing. There’s actually no action at all in the first sentence. Nobody does anything. It’s boring, implying a boring life and a boring person. If I were to follow this sentence with how much I loved him, you would have been prepared by the first sentence to hear my declaration of love as tinged with pity.

In the second sentence, my husband does something. There is action. He is the boss in that sentence. When I tell you after that sentence that I loved him, you’re much more likely to take it as a love that includes admiration, respect, and passion.

The simple word choice has an effect that ripples out to color the sentences that follow and impact your understanding of everything else I tell you about my husband.

When we say someone “is in a wheelchair,” we’re framing the wheelchair as a state of being, like being in a funk or in a mood. Conversely, when we say someone “uses a wheelchair,” we’re framing the wheelchair as a tool. Because the words we use impact the ways we see the world, a phrase like “in a wheelchair,” which obscures the agency of the person in the wheelchair, is a sneaky way ableism slides unnoticed into our speech and thus our worldview.

“In a wheelchair” implies that someone can’t do anything for themselves, that they are a burden with no agency. It erases all the hard work of navigating a world that is not designed for you. It is easier to leave someone out of an equation when we say they are “in a wheelchair.” On the other hand, “uses a wheelchair” acknowledges that a person can learn a new technology and navigate complex situations. Notice the difference between saying “we can’t hire someone in a wheelchair for this position” versus “we can’t hire someone who uses a wheelchair for this position.” In the first example, no further explanation is needed—of course you can’t hire someone who is a burden with no agency. But the second example does require at least a bit more explanation—why can’t someone who uses a wheelchair do this job?

I admit, I sometimes use this phrase. I’ve heard it so often that it occassionally rolls off my tongue without me even realizing I’ve said the dreaded phrase. But when the person in the wheelchair was the love of my life, whose effort was viscerally apparent to me, I learned how viciously unjust the phrase is. It sweeps aside all the effort, humanity, and agency of the person using the chair.

I know people who use this phrase are, like me, using it unreflectively. They are not issuing judgment on anyone. They mean no harm. They are speaking from a place of sympathy. But the language still does harm, whether the speaker intended it or not.

It’s a pretty easy switch to replace “in a wheelchair” with “uses a wheelchair,” and it will make a difference in how you see people who use wheelchairs.