All posts by Elizabeth Kleinfeld

grieving

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.

grieving

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.

Accessibility + Dis/ability

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.

Accessibility + Dis/ability

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.

grieving

How Grieving Folks—and Everyone Else—Can Ask for More or Less Contact

I hear often in the grief support groups I’m part of that folks feel like they were forgotten by their friends and family over time. They report an immediate outpouring of support that dwindled away after a few months. I am happy to say that I have not experienced this myself, but I have reflected on my own behavior toward people I’ve known who suffered the loss of a loved one; I’ve realized that several times I lost touch with a friend following their loss.

I didn’t back away from them because of their loss but because of my own poor communication, introversion, life chaos, or the notion that I would be bothering them. For example, a friend lost a parent near the beginning of COVID. I kept in touch with her for a couple months and then my husband had his stroke and I stopped communicating regularly with her. I realized today that I hadn’t heard from her in over a year and I sent a text. To her, it may very well look like I ghosted her after her parent died. Another example involves a colleague who took another job shortly after her loss. Because we no longer saw each other regularly, I fell into the “out of sight, out of mind” trap and stopped checking in with her.

In both these cases, the other person didn’t reach out to me, either, and that could be taken as a sign that they were no longer interested in a friendship. However, being widowed has made me very aware of how much effort it takes to reach out to others in the wake of a significant loss. I have a few friends who have been very diligent about texting or calling regularly regardless of whether I respond. I so appreciate this! I feel loved and happy every time they call or text me. But because I seldom respond, they may very well wonder if they are bothering me and over time, they may stop calling and texting.

But wait! All I have to do is periodically let them know how much I appreciate the continued communication. Every few months, I send them an email or text that says something along the lines of, “Thanks for thinking of me. Although I seldom respond to your messages, every single one of them means something to me and I hope you will continue reaching out. Maybe one of these days, I’ll surprise you by answering the phone or replying to the text.”

I have been invited to a lot of get togethers over the past year that I declined. I’m an introvert to begin with, so socializing drains my battery, even when I’m having a good time and truly enjoy the company of the folks I am with. Add grieving on top of that, and now anxiety, and often the thought of spending even a short amount of time with other people feels like too much for me.  

Case in point. I had drinks with a friend last week who is much more social that I am. She regularly invites me to do things with her. I say yes as often as I can, but frankly, “as often as I can” probably equates to two or three times a year under the best of circumstances. After our drinks last week she said she was continuing on to another event and invited me to go with her. The event sounded like fun, but I knew it was too much for me. Just working up the energy to meet her for a drink had taken some effort and I was already looking forward to being back home.

I told her the truth. “That sounds like a fun event, and I wish I had the energy to come with you, but I’m feeling pretty depleted.” She said she understood.

Then I continued: “I appreciate you regularly inviting me to do things and I hope you don’t take the fact that I almost always decline to mean I’m not interested. I just don’t have the energy these days. Please keep inviting me to things.”  

“Oh,” she said, “I’m so glad you said that! I sometimes wonder if I’m being a pest with all my invitations.”

“Not at all,” I assured her. “I love being invited! And one of these days I’ll surprise you by saying yes.”

This isn’t just something grieving folks can do. Anyone who wants more or fewer invitations can make that desire known. My sister is even less social than I am and I used to regularly invite her to my events. At some point a few years ago, she said, “I’m never going to say yes. Just stop inviting me.” I said, “But I keep hoping you’ll change your mind and show up!” She said, “I won’t.”

I checked in with her again about this over the weekend. “Years ago you told me to stop inviting you to events. Do you still want me to not invite you?”

She didn’t hesitate. “I still want you to not invite me. It was stressful to have to say no to every invitation and worry about hurting your feelings. Now I never have to worry about that.”

I fall somewhere else on the spectrum of introversion. I do want to be invited—but I want the authentic option of saying no and there being no hard feelings. I’ve learned that all I need to do is tell people what I want.

Folks who are worried that they are bothering someone who is grieving, why not just ask them how much communication they want? To avoid succumbing to the “out of sight, out of mind” phenomenon, you can put reminders in your calendar to check in on them.

anxiety, Buddhist life, grieving

Why I am trying to make friends with my anxiety (and taking drugs in the meantime)

A tricky thing about anxiety is that once you experience it, you begin to have anxiety about anxiety. I found this happening almost immediately. After my first anxiety and panic attack, I began worrying, “Will it happen again?” Once I began having trouble sleeping because of anxiety, I began dreading bedtime, worrying about anxiety kicking in.

Anxiety and panic thrive on and create fear. The more fear they create, the more they thrive. It’s a self-serving cycle that is hard to break.

This reminds me of a famous quote attributed to the Buddha: “Holding onto anger is like drinking poison and expecting the other person to die.” What we hold onto, we become. Holding onto anger makes us angry and bitter. Holding on to fear about anxiety makes us fearful and anxious. In the case of anger, I have learned through experience that letting go of it enables me to move on and be happy. In the case of grief, I’ve learned to let it pass through me at its own pace. If I try to control that pace by pushing it away and telling it to come back later, it outsmarts me and shows up at the most inopportune time.

A year after my husband died, I am still liberally turning my camera off during remote meetings and crying during face-to-face interactions. When I feel my emotions coming on, I let them come on. That’s the #1 rule of “turning towards.” Turning towards means not allowing the instinctual tightening to happen and to instead relax.

Applying this idea to anxiety means making friends with anxiety. The idea behind befriending or embracing anxiety is that anxiety is a normal response to stressful situations, in my case, the loss of my husband, which stirred up my fears of being alone, of not being enough when he was dying, and of dying myself. Acknowledging my fears and my anxiety about them lessens their grip.

Trying to make friends with my anxiety is somewhat terrifying—it’s like seeing a tiger charging toward me and deciding to hold out my hand to see if it’s friendly. Trying to outrun it is pointless.

This means when I feel anxiety bubbling up inside of me, instead of steeling myself against it, which signals my brain’s fear response to ramp up, I try to think to myself, “Oh, there’s anxiety. I wonder what it wants.” The tiger sniffs my hand, strolls slowly around me, and then sometimes slinks off. Sometimes. Other times, it just keeps strolling around me, slowly, keeping me on edge for a bit. It eventually loses interest.

Making friends is not something that comes naturally to me—I am socially awkward and introverted. I don’t seek out opportunities to make new friends, and I feel similarly about making friends with anxiety: I’d rather not. But anxiety is a tiger that keeps stalking me.

I’ve been listening to guided meditations on the app Insight Timer with names like “Befriending Anxiety” and “Embracing Anxiety.” While traditional Buddhist/Zen meditation, which focuses on clearing the mind, simply makes space for my anxiety to take hold, guided meditation gives my mind a focal point so that space doesn’t get created.

Like everything else hard in life, it is a process and not a linear one. I am getting help along the way with therapy and drugs. The drugs help me relax, which allows me to get enough sleep to function, and to resist that instinctual tightening. I’m taking Escitalopram, an antidepressant that helps with Generalized Anxiety Disorder; Ativan, which I take at night to help me sleep; and hydroxyzine, which helps with acute anxiety during the day. Ideally, I will be able to ease off the medications within a few months, after I’ve made peace with my new pet tiger.

anxiety, grieving

I had anxiety all wrong–and maybe you do, too

I mentioned a couple weeks ago that I have started experiencing anxiety and panic attacks. For about three weeks, I have had a near constant nervous feeling in my stomach and a tightness in my chest. This constant low-level anxiety spikes a few times a day and becomes a panic attack in which I start hyper-ventilating. Sometimes I burst into tears. As someone who has meditated for decades, I’ve been shocked to find that meditating right now makes things worse, especially at night when I am trying to sleep. Emptying my mind seems to create space for my brain to go directly to my darkest, scariest thoughts, and touching on those thoughts seems to plunge me directly into a feeling of dread and doom.

While meditating isn’t helping, other aspects of my Buddhist practice are helping a bit. Chanting works better than meditating because instead of focusing on clearing my mind, I can focus on the chant. My go-to chant is nam-myoho-rhenge-kyo, which is shorthand for the concept of karma. Chanting nam-myoho-rhenge-kyo allows me to focus on the order that does exist in the world. I also know that at the exact moment that I am chanting nam-myoho-rhenge-kyo, someone else somewhere else in the world is, too, so it helps me feel connected rather than disconnected. My late husband used to chant nam-myoho-rhenge-kyo when he felt overwhelmed by the challenges of his stroke, so the chant also makes me feel closer to him.

Another aspect that is helping a bit, which I will talk more about next week, is turning toward my anxiety rather than away. This means rather than trying to avoid anxiety, and push it away when I feel it bubbling up, I try to respond with curiosity and compassion. I actually talk to my anxiety; for example, when I feel it building in my chest, I’ll say, “Oh, hello, anxiety. There you are. I wonder what you are trying to protect me from right now.” It might seem cheesy, but it gives me some distance from it and helps me not identify with it.

I’ve also started reading a book recommended by a friend, Anxiety: The Missing Stage of Grief by Claire Bidwell Smith. As the title makes clear, Smith suggests that anxiety is a typical part of grief. My own grief therapist echoed this, saying many of her clients experience anxiety. In my case, my worsening vision coinciding with the anniversaries of my husband’s stroke and death may have been the perfect storm for anxiety and panic to manifest.

I had it all wrong

This new experience with anxiety is making me understand how ignorant I have been abut anxiety in the past. I have had countless students tell me they have anxiety. My daughter struggled hard with anxiety in high school and continues to be challenged by it. While I am not someone who ever questioned whether anxiety is “real,” I have minimized its impacts. I have misunderstood it as unmanaged stress. I have minimized their experiences as being about lack of good sleep hygiene or stress management skills.

That has led to me making misguided suggestions (unsolicited, too) about strategies to try. Yes, I have been that person who has said, “Have you tried yoga? Or meditation?” Yoga and meditation have helped me with stress throughout my entire adult life, and because I was equating anxiety with unmanaged stress, the suggestion made sense to me. But now that I understand that anxiety is something else altogether, I feel foolish about those suggestions—and I am embarrassed that I broke one of my own rules about not offering unsolicited advice.

If you are one of the people who has born the brunt of my ignorance, I am sorry. I will do better from here on out.  

Now that I understand the distinction and the actual experience of anxiety, I am filled with compassion and admiration for folks who live with it. It’s a reminder to me that if I haven’t experienced something myself, I need to listen, accept how others describe their experience, and ask clarifying questions.

Speak from your experience

Since I’ve been talking about experiencing anxiety and panic, several people have reached out to me to offer strategies and resources that have helped them. What I appreciate about this help is that it is coming from people who have experienced anxiety and/or panic attacks themselves. Right now, I want as many strategies as I can get, so please, keep them coming—as long as you are speaking from personal experience.

grieving

The Strokeversary

Two years ago today, my late husband had the massive stroke that left him paralyzed on the left and with a long list of medical concerns. Overnight, he went from being the most energetic and physically strong person I knew to being unable to perform most daily functions on his own. He needed help to dress and bathe himself, to go to the bathroom, to sit or stand or move to a lying down position. His memory was impaired, he was unable to follow conversations, and he was in tremendous pain. 

Last year on this day he was still alive. He had just gotten his long-awaited motorized wheelchair a week or so earlier and was excited to have a little more independence through that. That morning when I walked the dogs, Tom showed off his independence by waiting for me to get about a block from the house and then he used his motorized chair to go down the ramp, turn onto the sidewalk, and follow me. I had no idea he was back there. The dog kept glancing behind us, but I was used to the dog being distracted and didn’t check to see what he was turning around to look at. Finally, after a few blocks, I heard something behind me that made me turn around, and there was Tom! It was a huge and beautiful surprise—he had decided to follow me, put his sunglasses on (a serious challenge with only one hand and having to navigate around his helmet), and negotiated his way down the ramp and across two streets. I ran to him and gave him a big hug, and he gave me his usual low-key, “Hey, babe,” as if there was nothing special about what he had done. He followed along for the rest of the walk. 

At the time, I thought it was an indication that we were turning the corner on the struggles of his post-stroke life. Eleven days later I would have to make the heartbreaking decision to remove him from life support. 

I have been anticipating this strokeversary with dread, unsure of how it would hit me. I am having to remind myself constantly right now to be open to my emotions and my grief. That felt much easier to do a few months ago, and as this strokeversary and the anniversary of his death have gotten closer, I’ve experienced more and more anxiety. 

A dear friend texted me a beautiful reframing of the strokeversary. She said

I hope you are finding a lot of peace today. Just wanted to let you know that I am thinking about you and how this day started off the most amazing year of love and caretaking that I have ever seen, ever. 

Her reminder of how close and loving Tom and I were in the year between his stroke and death was exactly what I needed. The stroke was horrible and I wish it had never happened, but Tom’s intense care needs and my willingness to provide for them gave us an avenue to trust, love, and intimacy that was incredibly special. We were able to talk about things in the last year that we had been guarded about before. We got to witness each other facing tremendous hardship with love and grace. We were able to be completely vulnerable with each other. I was already madly in love with Tom when he had the stroke, and my love bloomed exponentially after that. Seeing him face his challenges with grace and humor every single day inspired me to be my most patient and generous self. My caregiving inspired him to keep fighting through the pain and exhaustion. 

This is a tough, sad day, but one that is also full of endless love for my amazing husband. When I see myself through his eyes, it is also a day of compassion for myself. Lately I have focused on what I see as my failings as a caregiver: the times I didn’t know what to do, I wasn’t as patient as I wish I had been, I got frustrated, or I didn’t understand the depth of his pain. I know Tom forgave me for my imperfections and appreciated my effort. I was surprised by how honored I felt to be able to care for him. Having considered myself a selfish person my whole life, I was amazed at how easily caregiving came to me and how fulfilled I felt by it. It allowed me to be fully present for more than a few moments for the first time in my life.

My friend’s text reminds me that I can see this day as a tragic one that led to my husband’s untimely death or as the beginning of the sweetest year of our time together. This is the anniversary of the day when I found out what both Tom and I were made of. 

Accessibility + Dis/ability, grieving

Panic Attacks, Grief, and Fear

I’m still experiencing double vision and unable to read or write very much. Because of the dismissive attitude I’ve encountered about my vision from most eye doctors, I don’t want to see anyone but my favorite eye doctor, and she’s booked out for 3-4 months, so I haven’t seen anyone about this latest development. I’m making do for now by minimizing time spent reading and using Google’s voice dictation for writing.

I think this latest vision issue, along with the fact that the upcoming two-year anniversary of my dead husband’s stroke is on June 7 and the one-year anniversary of his death is on June 19, is contributing to a new wrinkle in my grieving: panic attacks. I had panic attacks for some time 20-30 years ago, always connected to interactions with a particular person. They were bad enough that I would hyperventilate, but because they were so clearly connected to interactions with a particular person, I could predict and prepare for them. What has started happening in the past week is different.

I’ve had two, one during the day and one at night. They were very dramatic, disruptive, and unexpected. Both times, I suddenly felt overwhelmed by a feeling of impending doom, heaviness in my chest, and trouble breathing. That quickly escalated to hyperventilating. I was in a Zoom meeting with very understanding colleagues the first time. The second time, my daughter, who has experienced panic attacks, was with me.

I attended a grief support group meeting over the weekend in which we talked about how the lead-up to difficult anniversaries and milestones is often much more difficult than the anniversary and its aftermath. That was my experience with my wedding anniversary and my dead husband’s birthday. With the stroke and death anniversaries coming up and the added stress of my double vision, I think my brain was overwhelmed and started sending distress signals out.

This TED Talk gives a succinct explanation of the current theory and understanding of panic attacks. Most interesting to me is that the fear of another attack can actually bring on more attacks. After having one at night, which woke me up and made it difficult to go to sleep again, I spent much of the following day dreading what would happen when I tried to go to sleep again. This is exactly the cycle that can cause another one. Once I realized what was happening, I was able to take preventive measures: I did yoga, had a cup of herbal tea, practiced box breathing, and listened to soothing children’s audiobooks.

Meditation made things worse, which surprised me. I’ve been meditating for 30 years and it’s been my go-to method for stress relief for decades. It turns out that emptying my mind just created space for panic. For me, engaging my physical body through movement, breathing, and the sensory experiences of drinking tea and listening to audiobooks seems to help assure my brain that I am not in danger.

I’m experimenting with giving myself permission to have big feelings of fear. That feels scary and overwhelming sometimes, but I think that pushing those feelings away when they come up builds up my panic response to them. Perhaps refusing to allow myself to think about losing my vision completely or being unable to read and write again has trained my brain that those thoughts are dangerous, so when they start to rise up, even in small ways, my brain reacts by panicking. I’m trying to allow those feelings, like I’ve leaned into my feelings of grief. This means engaging very consciously again with meditation teacher Doug Kraft’s “three essential moves”: turning toward, relaxing into, and savoring peace. It’s hard. I don’t want to turn toward my fears about my vision. I want to push them away, but inviting them in and getting to know them is what will make them feel more familiar and less terrifying.

I don’t usually acknowledge my fears about my vision. Before my husband died, it was easy to tell myself that if I went blind, he would take care of me. But I’m on my own now. I don’t think I’ve ever admitted on this blog that I do worry about going blind. Writing that sentence and leaving it there for you to read feels like some major turning toward. I’m not ready to relax into it. Maybe next week.  

Accessibility + Dis/ability

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.