All posts by Elizabeth Kleinfeld

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.

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.

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.

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. 

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.  

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.