All posts by Elizabeth Kleinfeld

grieving, mental illness

Welcoming Depression Back into My Life

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A couple weeks ago I realized my grief was veering into depression. Depression has been a constant in my life since I was about 8, but at that time, the world thought 8 year-olds couldn’t have depression, so I was just considered moody and bitchy. I was finally diagnosed in my teens and got on anti-depressants, which I took until my early 20s, when I was able to taper off of them and mange my depression with meditation, exercise, and lots of intentional choices about food and alcohol.

I was always aware that I was off medication “for now” and knew that I might need to go back on it at some point. Last year, when I was diagnosed with Generalized Anxiety Disorder and panic attacks, I started taking a low dose of Escitalopram, which can help with both anxiety and depression.

Over the last few months, many of the things I’ve attributed to grief had started to happen less frequently. I was still feeling intense grief but not every minute of every day, and sometimes I could go entire days without feeling intense grief. My appetite returned. My sleep was mostly regular. The sneaker waves of grief came less often. I didn’t feel compelled to visit my late husband’s bench every day.

But last month, I started wanting to sleep all the time again. I slept through my alarm in the morning. I craved sugar. I didn’t want to work out, which is one of my favorite things to do.  

A couple weeks ago, I noticed that instead of feeling my normal grief mindset of “life is hard today but it will pass,” I was thinking “life is hard.” I didn’t have my usual sense of temporariness. I felt a kind of doom I’ve come to understand as anxiety, but it wasn’t anxiety. Anxiety shows up in my stomach and chest, but this doom was showing up everywhere. It was all encompassing, like a weight holding me down. It felt physical, as if a heavy blanket had been thrown over me and I had to drag it around with me all day. I couldn’t shake the heavy blanket or get out from under it.  

It happened slowly enough that I didn’t quite recognize that anything was different. Then I started reading Depression: A Public Feeling by Ann Cvetkovich, which is part memoir about her own experience of living with depression. Some of her descriptions of how depression felt resonated intensely with me. She uses words like “pervasive” and “relentless” and describes being unable to work on a project she had been passionate about and “the impossibility of physical relaxation.”

My first thought was, “It sounds like grief,” and then I realized grief hadn’t felt at all like that in a long time. I went back through my journal and saw the proof there that I had not always felt like I was dragging a heavy blanket around.

I’m now taking an increased dose of Escitalopram. The increase pretty much made me sleep for two days straight, but now I can stay awake all day and I’m starting to feel more like myself.

Just as I tried to make friends with my anxiety (we are closer now but not quite friends), I am trying to take a non-combative approach to my depression. It is part of me and if I love myself, I must love the depression in some way.

Two ideas have been helpful to me in this regard:

When I started grad school in 1993, nobody knew me or my past as a person with depression, so I didn’t mention it to anyone. I wasn’t consciously trying to hide it, but I also wasn’t bringing it to anyone’s attention. A few months ago, I added “I live with low vision” to my online bio, and soon after that I added anxiety to the list. A week or so ago, I added depression to the list.

Acknowledging publicly that anxiety and depression are part of my identity feels risky. Mental illness is still stigmatized and often seen as opposed to critical thinking, which is prized in academia. But I know from casual conversations that many of my students and colleagues live with mental illness. (I have tenure and am a full professor, so if I feel nervous about the disclosure, imagine how folks with less job security feel.)

Acknowledging depression in my bio is one way I am being compassionate towards myself and owning my depression.

Accessibility + Dis/ability, caregiving, grieving

What Being a Caregiver Taught Me About Gracefully Receiving Help

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I’ve talked before about how accepting help from others benefits those who give the help as well as those who receive it. When I was my late husband’s caregiver, I was giving help on a large scale—and I was receiving the benefits of that on a large scale, too.

I spent most of the last year of my husband’s life taking care of him. The entire left side of his body was paralyzed. Without use of the left side of his body, he couldn’t roll over in bed or get dressed or undressed. I woke up several times during the night to reposition him in bed, I dressed and undressed him every day, I helped him sit up, get out of bed, go to the bathroom, and move from his wheelchair to the bed or vice versa.

I also had to take into account the cognitive impacts of his stroke. His speech was slower than before the stroke and his memory was undependable. He also had a mysterious condition called left neglect in which his brain didn’t process anything that happened to the left of his midline. He would start reading from the middle of a line of text because his brain didn’t process the left side of the page. He would eat all the food on the right side of his plate and ask for more, even though the left side his plate hadn’t been touched. I had to constantly remind him to look to his left.

It was a lot of work. Caregiving is never ending. Those facts are true, but what they don’t capture is that it can also be intensely connecting. I was exhausted AND I savored every moment that I got to care for him.

Many people have said to me since my husband died “I’m sure you miss him but don’t miss the caregiving,” but in his last year, the two were inseparable. Being with Tom meant always being on alert for him dropping his phone, losing track of something that was right in front of him because it was slightly to his left, having a sudden urgent need for the bathroom, becoming disoriented and anxious. It was hard for both of us. But when I remember him, my mind goes first to those memories—because it wasn’t only hard for both of us. It was also incredibly intimate and connecting.

Our communication skills got gold-medal good. We really learned what it means to ask for what you want, to not take each other for granted, and to not expect your partner to be a mind reader.

I recently read a book by Sarah Smith Rainey called Love, Sex, and Disability: The Pleasures of Care that moves beyond the exhaustion and exploitation of (mostly female) caregivers and addresses how much true pleasure can be involved. Rainey studied married couples in which one partner was the caregiver for the other. Rainey’s research is groundbreaking because her research looks at the experience of the cared for as well as the caregiver. Typically caregiving relationships are assumed to be one-sided, with the caregiver doing all the work and the cared for doing all the receiving. In fact, many of the couples Rainey interviewed reported that their relationships were reciprocal, which is what I found with my late husband.

He allowed me to take care of him, which is much more complicated than it sounds. As you can imagine, going from his pre-stroke state of being fiercely independent to his post-stroke state of needing the level of care I described above was a huge adjustment for him. I was amazed at the grace he exhibited in accepting the shift. Rather than stubbornly resisting my caregiving—which, frankly, is what I expected him to do—he put his energy into showing appreciation all day every day for my caregiving. That was how he took care of me.

The experience helped me make a commitment to my daughter: if/when I need caregiving at some point in my life, I will be as graceful and accepting of it as Tom was. I got to practice that commitment last fall when I had brain surgery and my daughter took care of me for a week. She had to remind me a few times of my commitment, but I did ok overall, and it actually got easier each day.

Most of us who live long enough will find ourselves in need of caregiving at some point. We can make it a nightmare for everyone by being stubborn and refusing to accept help or we can receive the help gracefully.

Accessibility + Dis/ability, anxiety, grieving

Recognizing Internalized Ableism on My Anniversary

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Today would have been my anniversary with Tom. Today IS my anniversary with Tom. My inclination is to write the first sentence because I am no longer his wife, but I realize that whether he’s dead or alive, today IS the date we got married in 2011. There is much that was and much that still is. My love for him and the life we had together is just as strong as it was when he was here to celebrate with me. But that life is a memory now, and as much as I love the life I am living now, it is not a life with Tom.

I was at a conference last week and knew my anniversary was coming up, but lost track of which day it was. My return flight yesterday got significantly delayed and I ended up not getting home until after midnight. After crawling into bed, I was almost asleep when suddenly I realized that because it was after midnight, it was my anniversary.

That realization, on the heels of a long travel day, kicked off my anxiety and big tears. My mind kept going back to our last anniversary together, after his stroke and just a few months before he died. We went to one of our favorite restaurants and they were woefully unprepared to greet a guest using a wheelchair. The next morning over brunch, Tom took my hand and apologized for not having understood the challenges of my being disabled.

It was an incredible acknowledgment. The last few years, he had been incredibly supportive but when I first started mentioning that my vision didn’t seem right, he was skeptical. Like many people in my life, he wondered if I was exaggerating things or just not trying hard enough to see. Especially when my disability inconvenienced him, he would ask me if I was really trying. It was maddening for both of us.

I finally understood at some point that he hadn’t not believed me but that he hadn’t been ready to accept that I was going to have to deal with the challenges of a disability for the rest of my life. I noticed a similar resistance in myself when Tom’s doctor told me there was a high likelihood that Tom would never walk again. My immediate response was that of course Tom would walk again because I knew he would work hard in physical therapy.

But no matter how hard he worked, walking unassisted was out of his reach. I kept thinking he just had to work a little harder, but even as I had that thought, I knew it wasn’t accurate. All of his physical therapists were astounded at how much progress he made and how hard he did work. It wasn’t about hard work—it was about the stroke having knocked offline the part of his brain that handled his left side. I saw the MRI images and the massive infarct, the technical term for the brain tissue killed by the stroke. Two-thirds of one hemisphere of his brain just didn’t exist anymore.

Even knowing it wasn’t about how hard he worked, my own brain kept grasping at the idea that if he just worked a little harder, maybe, maybe, he would walk again. I realize now that that’s the line of thinking he followed when he wondered if I was trying hard enough to see.

This is what internalized ableism looks like: me wishing my husband would work hard enough to walk again, him wishing I would try hard enough to see what he saw. The line of thinking might originate with optimism and hoping for a “positive” outcome, but there are at least two big problems with that rationalization. First, it attributes the desired outcome with hard work and less than the desired outcome with not enough work, and second, it assumes that walking, in my husband’s case, and what is considered normal vision, in my case, are the only outcomes that can be judged successful.

On this anniversary, I miss everything about that man who used a wheelchair, including his wheelchair. His physical and occupational therapy sessions were often team efforts, with both of us working together to get him somewhere or accomplish a task together. It helped us realize in a concrete way that we were always on the same team. We hated the stroke and the pain it caused Tom, but it opened up some opportunities for us to communicate better and become closer.

I celebrated this anniversary by sleeping in, being gentle with myself, and sharing memories with my daughter. I went to Tom’s bench and talked to him for a bit. I got a few emails and texts from loved ones, acknowledging the anniversary, which I appreciated. I felt lucky to have had such a great love and proud of the life I am living now, which was shaped in so many ways by my relationship with Tom.  

grieving, normalizing what should be normal

One Way to Normalize Grief: Just Be Present

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My husband died over 20 months ago, a fact that strikes me as unfathomable. On the one hand, the loss still feels hard and raw. On the other, my life has changed so dramatically in the time. Part of me feels like, “What?! Only 20 months?! It feels like a lifetime!” and another part of me can’t believe I’ve been a widow for this long.

For the first year after he died, I didn’t worry about anyone getting tired of hearing me talk about him or my loss. I figured everyone would give me a one-year grace period—and they pretty much did. But now that it’s closer to two years than one year, I am starting to wonder if people are tired of hearing about my late husband and my widowing. To be clear, no one has told me they are tired of it; the pressure I’m feeling to “move on” is internalized messaging.

Yes, I did just admit that I am putting pressure on myself to “move on,” after saying, just last week, that the distinction between moving on and moving forward is important to me and that I’m a proponent of moving forward.  It is important to me, but having been socialized in a culture that wants people to move on means I have internalized that messaging.

I spent most of yesterday morning crying, alternately curled up on the couch and wandering around the house picking up photos of my late husband, his harmonica, his life jacket, and other mementos of his. I realized at some point that I needed to talk to someone who would understand and that’s when my self-consciousness kicked in. “He’s been dead for 20 months,” I thought to myself. “Everyone is tired of you moping.”

Luckily, I recognized this self-talk as inaccurate and called my wonderful brother-in-law, who didn’t seem one bit tired of me moping. We told stories about Tom, joked about his ability to spend money, and were just sad together. He encouraged me to call any time.

I did not feel less sad after talking to my brother-in-law, but I did feel less alone. I will never stop feeling sad about my husband’s death, but I am in general having fewer days like this. I’ve heard other widows say that the time between the hard days gets longer but the hard days never go away. I am experiencing that.

What I appreciate most about my call with my brother-in-law is that he didn’t try to cheer me up and he didn’t tell me I need to do anything differently. He just let me be sad and he joined me in that sadness. He normalized my sadness, and when I said, “I feel like I shouldn’t be like this after 20 months,” he reminded me that there’s no timeline for grief.

I just listened to an interview with Megan Devine on Jameela Jamil’s podcast about why so many people don’t support others in grief this way. I’ve mentioned Megan Devine before—she created the only grief journal I liked, in contrast to several others I looked at which enraged me to the point where I threw one across the room. Devine is the psychoanalyst, grief advocate, and widow behind Refuge in Grief, an online grief resource that stands out for its gentle accepting attitude toward grievers.

In the interview, Devine says our own fear of losing a loved one gets in the way of us supporting folks who are grieving. “We don’t like to think about the people we love dying or disappearing,” she explains, so instead of listening and being open to the pain our friend is experiencing, we try to fix things for them. Devine says, “It’s easier to look at someone who’s in pain if you can fix that for them, you feel more powerful, you don’t feel helpless.” She goes on to say, “We haven’t learned what our role is in someone else’s pain.”

I am learning through my own grief experience about the value of being present for someone else’s pain. When we listen to someone without trying to fix their pain or cover it up with cheeriness, we are being present. When my brother-in-law let me be sad and shared his own sadness, he was being present for me. By being present and not judging me for the depth of sadness I am feeling, he helped me pull back from judging myself.

When we try to fix the pain or distract from it, we imply that it is wrong or unhealthy, when in fact, the opposite is true. Maybe we can think of our role in someone else’s pain as one of witnessing. By witnessing and being present for someone else’s pain, we show that it is normal, that the person feeling it is normal.

grieving

Moving Forward: Adjusting to New Rhythms

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I think a lot about the distinction between moving on and moving forward after someone dies. Moving on means putting the loss behind you and going back to living life the way you did before the loss occurred. Moving forward is quite different; it is integrating 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. Moving forward acknowledges that the loss experience will change how you live your life.

Being widowed has changed me. In October I wrote about trying to come to terms with the fact that I will never again be who I was when I was with my husband.  I talked then about how I still wanted to be the person I was before my late husband died but that I was trying to focus on who I am becoming as a result of the loss. I noticed then that I was more open and vulnerable and more comfortable taking about death.

Lately, I am struck by how different the rhythm of my days is now. Widowed people often find that the loss of their loved one impacts their lives in this way.

For my entire relationship with my husband pre-stroke, I went to bed around 9 pm and woke up at 5 in the morning because he was an early riser and liked to chat in the morning. I learned that serious discussions with him went better in the morning than if I waited until after work. Now that I don’t have to get up so early, I find myself sleeping until 6 and going to bed around 10 pm, but every night when I go to bed, I second-guess my alarm setting. Waking up at 5 for so long made that feel normal and setting my alarm for 6 feels off.

Other habits are changing to accommodate how my life is now. Tom enjoyed watching movies and TV, but I prefer to read, so most nights and weekends I read. What I eat has changed significantly. Tom was a meat and potatoes guy—except for when he was eating nachos or Mexican food, which he adored. Now I eat almost no meat. I haven’t eaten nachos in nearly two years. (The thought of nachos makes me smile, though—one time when I got back from being out of town for a few days and noticed that all the meals I had left for him were uneaten but the cheddar cheese and chips were gone; he admitted to having eaten nachos every night for the five days I was gone).

The shape of my days is different. After his stroke, my day was scheduled around taking care of him. In the morning, I would wake him up, help him sit up and bring him his coffee and his morning medications. We would chat about the day and then I would walk the dogs and work out while he drank his coffee. After that, I would get him dressed and help him get into his wheelchair. He would watch TV, read, or sharpen knives (for real, that was his main hobby after his stroke) while I worked in my office for a couple of hours. I would take a break at some point to help him stretch his arms.

At midday, I gave him his midday medications and made him lunch. He usually had speech, occupational, or physical therapy in the afternoon, so I would help him go to the bathroom before that. If he had speech therapy, I worked in my office, but I usually participated a bit, even if just to cheer, in his occupational and physical therapy sessions.

In the evening, I made dinner and we ate together. Then I got him ready for bed and brought him his evening medications. After he was in bed, I would massage his legs and feet.

My entire day was structured around providing care to him. It was hard work but work I loved. The intimacy of caring for someone at that level is beyond words. When my daughter was born and depended on me for everything, I remember feeling similarly and I assumed part of the connection was that she had been part of my body for nine months. But the connection I felt to my husband while taking care of him was the same—finding every sight, smell, and sound utterly delightful, feeling absolute peace and completion when he was comfortable and happy.

As I continue moving forward, I notice intensely contradictory feelings. On the one hand, I am very happy, feeling loved by and connected to so many people and living a life that is full of joy and peace. On the other hand, I am achingly aware that as I move forward each day, I also move farther away from the beautiful life I had with my husband. I miss having those moments of care punctuating my days.

I recently remodeled my bathroom and had a tile installed that is inspired by the Japanese art of kintsugi, in which broken pottery is repaired with gold, leaving the restored piece with deep gold veins that call attention to themselves. Every time I step into that bathroom and see the tile, I am reminded that I am turning the pieces of my life into something new and beautiful. Those pieces were shaped by the love I had with my husband and they still exist, but they are held together now with something new that I am creating.

Accessibility + Dis/ability

The Real Reason Why Going to Conferences Is So Exhausting to Me

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I came home this weekend from two back-to-back conferences in Chicago that left me exhausted. I only spent one full day at each conference, so I shouldn’t be that tired, but navigating conferences as a disabled person takes a lot of stamina. This is true even though accessibility gets talked about a lot more now than just a few years ago and academic conferences seem to all have accessibility guides.

The accessibility issues I ran into happened even though everyone I interacted with was kind and meant well. Many people helped me in different ways. But people’s good intentions and my positive attitude don’t make the world more accessible. As Stella Young put it in this fantastic TED Talk, “No amount of smiling radiantly is going to make a staircase turn into a ramp.”

Things started off a bit tricky, with a flight delay that caused me to arrive at my hotel after dark. With no natural light coming in, I bumbled around my hotel room, having to rely on the inadequate lamps. I have described before what I like to do when I first arrive in a hotel room to make it accessible; with it being dark outside, I wasn’t able to do everything I like to do until the next morning. Luckily, the room did have better-than-I’ve-come-to-expect lighting by the bed, but much of the room was just a shadow to me until morning and I have the bruises on my hip where I walked into the dresser to prove it.

The bigger challenge was navigating the conferences themselves. The first conference was an International Writing Centers Association event at DePaul University in a space that was well-lit, but the room numbers were tiny and hard to find. I had to walk up to each room’s door, locate the sign, and put my face an inch or two from the sign to find the room number. Luckily, other conference participants were kind about noticing my trouble and helping me find the rooms I needed; but the stress of frantically trying to find presentation rooms made me feel worn out by the time I got into the right rooms.

 The conference session themselves were excellent, but the accessibility was not. Despite the IWCA having a top-notch accessibility guide, speakers used the microphone and provided printed scripts in only one of the three sessions I attended. In the other two sessions, presenters had no handouts and did not use the microphone. One of these sessions was a roundtable in an auditorium, so the sound just disappeared into the ether. Normally I would have asked the speakers to use a microphone, but there was some confusion at the beginning of the session and by the time I realized speakers weren’t going to use the microphone, I would have had to interrupt the proceedings quite awkwardly. In hindsight, I wish I had done just that, but in the moment, I was discombobulated.

The second conference was the Conference on College Composition and Communication at the Hilton Chicago. I encountered so many unexpected steps and tripping hazards there that by the time I headed home, my neck hurt from looking down to watch my step. The room numbers were just as challenging to find as they had been at DePaul, with the added twist of seemingly random placement of room number plaques. At least at DePaul, all the room number plaques were to the right or left of the doors and looked similar; at the Hilton, some were to the left, some to the right, some above, and some I never found. Some plaques were electronic and others were not. Some had high contrast and some did not. Plus instead of room numbers, the rooms had names, so there was no internal logic; while I know room 5 is likely to be beyond room 4, where might the Lake Ontario room be in relation to the Buckingham room?

Finding room numbers was frustrating, but the surprise elevation changes with unmarked steps were truly treacherous. In one of the conference spaces, there were at least two little sets of 2-3 steps that almost killed me. Both were carpeted and blended in with the surrounding flooring. After almost tripping down each one, I turned to get a good look at them. One set did have a gray stair marker that I could see after the fact; the carpet was blue and gray, so the gray stair marker didn’t stand out and thus, didn’t really do the job it was supposed to do. This is a great example of focusing on legal compliance without considering the real purpose of accessibility: to make a space safe and navigable by a person with a disability.

I entered each room completely frazzled. Like the IWCA conference sessions, the Cs conference sessions were a mixed bag in terms of accessibility. Cs also has an excellent accessibility guide; still, speakers in only three of the four sessions I attended used the microphone and speakers offered scripts in only two of the four sessions. Slides in all the sessions were illegible to me, but I suspect part of that is because the projection screens were smaller than speakers may have anticipated and often positioned awkwardly so that not everyone in the room had a clear view of them.

Both of these conferences relate to literacy and the teaching of writing. The presenters are people who value reading and communication, and yet, clearly, a large proportion of them have not read the wonderful accessibility guides available to them.

My plea to people who give presentations:

  1. Read the accessibility guide. If the conference planners have created an accessibility guide, read it and follow the guidelines in it. If you don’t know how to do something the accessibility guide recommends that you do, learn how.
  2. Use a microphone. I understand why people don’t use a microphone. If you’re not used to speaking into one, it can feel awkward. But in 2023, if making presentations is part of your job, then you need to get comfortable using a microphone. Consider it part of your professional development.
  3. Create accessible slides. When you create your slides, assume that the presentation situation will be less than ideal: the room’s lighting won’t be great, the screen will be smaller than you’d like and farther away from participants than you’d like. And for the love of whatever you hold dear, please observe the rule of 5. Again, if you are not good at creating accessible slides, consider it part of your professional development to get good at it.
  4. Make a script available to participants. Yes, I know, it uses paper and is a bummer to have to have your presentation written up in advance rather than writing it feverishly the night before. Again, part of being an academic professional these days means making your materials accessible.
  5. Advocate for accessible conference spaces. If you have anything to do with planning a conference, ask pointed questions of the host facility about accessibility. How will folks who use wheelchairs access spaces? How will vision-impaired folks find rooms? How will hearing-impaired folks hear presentations? Where can folks go for a quiet space if they are over-stimulated? And have a back-up plan in case ASL interpreters call in sick or get stuck in traffic (this is another great reason for presenters to have scripts available).
grieving

Stop telling people facing loss that they are strong

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Grieving people are frequently complimented for being strong. I have been told some variation of “you are strong” hundreds of times since my husband’s stroke. I know people mean it as a compliment or an assurance that I have what it takes to make it through the grief I am experiencing. 

But it gets old. Folks who are grieving get really tired of being strong. A fellow griever recently said to me, “I don’t want to be strong anymore. I want to be weak.” But when I asked what “weak” would look like, my friend said, “I don’t know.” This post on What’s Your Grief captures some of the other problems with telling someone grieving that they are strong, most significantly making them feel like they haven’t really been seen. 

In addition to it getting old and causing the problems What’s Your Grief describes, it’s also just not an accurate assessment of what healthy grieving requires of us. 

It may be true that grieving calls upon us to be strong, but I think we conflate “strength” with other qualities that grievers rely upon, such as the ability to prioritize, flexibility, courage, self-compassion, and mindfulness. I wonder if people recognize these and other qualities in folks who are grieving, but lack the emotional intelligence or emotional vocabulary to articulate them and default to complimenting strength. 

But focusing the compliments on strength implies that strength is the most important quality one needs during a trying time. To be strong is to be firm, immovable, stoic, unbending, powerful. 

When my mother died 41 years ago, I put my head down and barreled through it, an approach that seems to exemplify pure strength. But because that approach led to me having issues with death, mothers, holidays, and more, I very deliberately took a different approach when my husband died.

Since my husband’s death, “strength” is not a character trait I’ve focused on. The compliments I get on my strength don’t feel accurate. If you’ve been reading my blog for a while, you may recall that I’ve talked about my ability to set boundaries, my patience with myself, and my willingness to feel sadness. These qualities have helped me much more than strength has. 

As I reflect back on the conversation with my friend who wanted to be “weak,” I realize that because our minds automatically go to “weak” as the only alternative to “strong,” those very qualities that I just listed as having been crucial to my ability to navigate grief might be seen as “weakness.” 

I was recently reminded of what happens when you focus on strength to the exclusion of other things. After my unexpected brain surgery in the fall, I wasn’t able to do ab work in my workouts for a few months. I was so excited to get back to ab work this winter that I overdid it. I got a massage last week and when I told my massage therapist I was having some lower back pain and general lower body stiffness, she immediately pinpointed my tight psoas muscles as the culprit—a result of my keen focus on my abs. 

The remedy? Backing off of strength training and focusing on flexibility. 

Oh, the irony! That’s exactly what I’ve done emotionally! Now I need to treat my body the way I’ve treated my heart. 

The next time someone suffers a loss and you want to wish them strength, stop. Consider what might be a real struggle for them and offer them that thing. Are they often hard on themselves? Wish them self-compassion. Do they like everything done just so? Wish them flexibility. Are they highly independent? Wish them the freedom to depend on others. 

Our focus on strength as a positive trait minimizes the value of other traits. This quote from the Buddha captures the fallacy: “In the confrontation between the stream and the rock, the stream always wins—not through strength but through persistence.” 

grieving, normalizing what should be normal

How to Stop Trying to Fix Grief + Just Listen

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Last week, a friend whose mother is dying called me. She is experiencing intense anticipatory grief. On our call, she expressed sadness and feelings of powerlessness. I listened to her, acknowledged the sadness of the situation, and reassured her that her feelings were normal. Our call ended with her still feeling very sad. She thanked me for listening.

I did something very simple on that call but it is something it has taken me years to learn how to do: I listened without trying to fix anything. Nothing about her situation can be fixed; her mom will die. Watching her mom dwindle away will hurt intensely. There was nothing I could do to change the outcome or make her hurt less. All I could do was listen—and yet, by simply listening, I was able to make her feel less alone and help her face her feelings rather than turn away from them.

Listening without trying to fix is something I’ve had to learn how to do, and maybe you need to learn it, too.

Many people think that trying to fix things is an issue for men but not for women, and it may be more of an issue for men than for women, but since my husband’s stroke and death, I’ve had plenty of women as well as men try to “fix” my grief. Perhaps we have so much trouble accepting grief as normal and healthy that even women fall into fixing mode when faced with it. Whenever someone says, “How can I cheer you up?” or launches into explaining to me what worked for them when they were grieving—that’s fixing.

And it’s not helpful.

Grief is not a problem to fix or an obstacle to overcome. It hurts and is messy and may be painful to watch, but it is also a completely normal response to loss. Focusing on making the grief go away misses the point that grief is how we process loss.

Many times since my husband died, I have wanted to share my complicated thoughts, fears, and emotions with others. I have felt the truth of Maya Angelou‘s statement that “There is no greater agony than bearing an untold story inside of you.” Talking about my grief helps me make sense out of it. When I am sharing my grief with someone else, I am looking for connection and acknowledgment. It can be helpful for someone to paraphrase back to me what I’ve said or point out patterns. To do that, the person I’m talking to needs to really listen, not just hear.

When I first began taking listening seriously, I found it very difficult to stay present. My mind wandered, much like it does sometimes during meditation. Sometimes my mind wandered to possible solutions for the person speaking. But just like when I’m meditating, I can notice the wandering and bring my mind back to the present. I can notice solutions or judgments rising up in my mind and let them go without giving them voice.

When you’re listening to someone who is grieving, you may wonder what to say if you’re not trying to fix the situation. You can say, “If you want to talk, I’m happy to listen, but I’m also ok sitting here in silence with you.” You can say, “It totally sucks that your person died.” You can say, “I’m right here. You’re not alone.” You can ask questions about how they feel, how they want to feel, or what they want or need from you.

If you want to offer advice, ask first. You can say something like, “I have an idea of how I might approach this situation. Are you interested in hearing it?” And if they say no, shut up.

I think the urge to fix grows out of a desire to “do something.” When we are quietly listening, we can feel like we aren’t doing anything. It can take some time to learn to be ok with that.

Grief is hard. Listening is hard. Not trying to fix things is hard.

grieving, life skills

Stop Telling People “I’d Love to Help, Just Let Me Know What You Need”

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Being on the receiving end of a lot of kind and generous offers for help in the last few years has taught me a lot about how to offer help to others. I realize now that the help I’ve offered others has often been too vague and open-ended to be really helpful. Inspired by what I’ve learned, I’ve made one of my 2023 resolutions to offer specific help instead of the blanket “let me know what you need.”

“Just let me know what you need”—it sounds perfect, doesn’t it? When I have said it in the past, I meant that I wanted to help and was willing to do whatever needed to be done. I was always sincere in being willing to do whatever needed to be done. But having been on the receiving end of that statement many times since my late husband’s stroke, I realize how unhelpful the phrase is. And having uttered the phrase many times myself, I can’t think of too many instances in which someone actually took me up on the offer.

In the midst of my husband’s stroke and then death, most of the time I was too overwhelmed to know what I needed, so I asked for nothing in the moment. Later, when I recognized a need, I either couldn’t remember who had offered help or I felt sheepish calling in that help so many days/weeks/months/years later.

I found it a lot easier to accept help when it was offered with a specific outcome and even time, like this: “I’d like to bring you a meal. Would Tuesday night about 5 work?” When people said, “Let me know when I can bring you food,” I appreciated the offer but following up took more organization (who offered food? What exactly did they offer?) and effort than I was able to muster most of the time. And I sweated over how to phrase what now felt like a needy request; “Hi, I think you offered me a meal a while ago . . . can you bring it over tonight?” seemed obnoxious.

I also found that the phrasing of the offer makes a big difference. Although “let me know how I can help” totally doesn’t work for me, a similar offer phrased as a question does. When someone asks me, “What do you need?” I can actually think of things, whereas when they say, “Let me know how I can help,” my mind goes blank. Perhaps it’s the question structure that prompts my brain to answer it, while the statement feels almost like something else to be added to my to-do list—“figure out what I need and tell so-and-so.”  

Sometimes after my husband’s stroke or death, someone asked me, “What do you need?” and I answered with something they couldn’t possibly help with or with a need so big and vague it was unclear how it could be met. But the lovely thing about people asking “What do you need?” is that when my answer doesn’t net a concrete thing for them to do, they typically ask follow up questions, like this:

Friend: What do you need?

Me: Ugh, I need to not feel overwhelmed.

Friend: Hmmm. What have you done in other situations when you felt overwhelmed?

Me: I don’t know. Drink. Just kidding. Um, I’ve made a list of everything that needs to be done and then prioritized it.

Friend: How about if I come over and help you do that?

Another time I told a friend who asked what I needed that I was trying to figure out how to get out of a project I felt committed to. She offered to do some roleplaying to help me figure out how to have a conversation about leaving the project, which turned out to be quite helpful and empowering.

I also appreciate when people’s offers prompt me to recognize a need. For example, when someone told me they could help me with organizing and planning activities for a memorial event, I realized that a memorial event could be more than a simple gathering with eulogies. That friend ended up helping me plan an amazing memorial event that was so great the bartender told me, “This event was more fun than the last few weddings I’ve worked.”

When I reflect on the times I’ve offered help, I see that specific offers have been much more readily accepted. When I’ve offered to write obituaries, collect remembrances in a book, write thank you notes, organize belongings, or make difficult phone calls to banks, insurance companies, and other institutions, my offers have often been accepted. When I’ve said, “Let me know how I can help,” the story is different. Occasionally someone will contact me to ask for company or help doing something tough, but it’s rare.

To take action on my resolution, I’ve made a list of the skills I can offer to others: writing, listening, organizing, having difficult conversations, and cooking. I will no longer say, “Let me know what you need.” From here on out, I will either offer to do specific tasks related to my skills or I’ll ask, “What do you need?”

grieving

19 Months Out: Emptying the Last Bag from His Last Hospital Visit

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For 19 months, I was unable to use one of my reusable shopping bags. The gray polka-dotted bag was tucked away in the back of a closet, full of the items I had put in it when I packed things to go with my husband to the hospital for the surgery he would never wake up from. Almost everything he needed fit into one suitcase, but there were a few odds and ends that I tossed into the bag: salt and pepper (he was oddly enamored of the food at the hospital his surgery was at, but felt it lacked seasoning), a CBD patch (the medical staff frowned upon the use of CBD products because of the lack of long term testing, but knowing I had one packed made my husband feel more confident about being able to cope with the post-surgical pain), and six of his favorite condom catheters (he liked the ones I bought better than the ones available at the hospital).

When I came home from the hospital a widow, I put the suitcase in the area of our living room that we had used as a bedroom after his stroke, our basement bedroom rendered inaccessible. For a month, the gray polka-dotted bag sat on top of the suitcase. At some point, I emptied the suitcase, but when I picked up the gray polka-dotted bag and saw the things inside—all items intended to make my husband more comfortable—I quickly closed it and pushed it out of the way. While everything in the suitcase was typical stuff one might take to the hospital, the items in the bag were specific to my husband. In fact, he had specifically requested each item.

Over time, as I collected his belongings, giving some away to friends and family and donating others to charities, I began putting items I either wanted to keep or just couldn’t deal with yet in a plastic bin. The gray polka-dotted bag ended up in the plastic bin. For months, the plastic bin was in the dining room, a reminder to me that it and its contents existed. It made sense to have it easily accessible because I was still finding things to add to it, but over time, its contents stabilized, and I found that I was no longer adding anything to it. I moved it to the closet in my home office.

Whenever I bought groceries, I noticed that the gray polka-dotted bag wasn’t with the others and I went through a process of wondering where it was, recalling that it was in the plastic bin, remembering what was in the bag, and making the decision to leave the bag in the bin, untouched. This went on for a year and a half.

Two weeks ago, I went to gather up my grocery bags to go shopping and realized that my daughter had borrowed one and I didn’t have enough on hand. I considered getting the gray polka-dotted bag from the plastic bin, started walking toward my office, and stopped. I wasn’t ready. I went to the store but got only some of the items on my list, careful to limit myself to what would fit in the bags I had. Perhaps my daughter would return the bag she had borrowed before I needed groceries again, I thought.

Last week, the borrowed bag still with my daughter, I took a deep breath and got the gray polka-dotted bag out of the plastic bin. I brought it to the dining room table and spilled its contents out. The salt and pepper shakers, CBD patch, and condom catheters represent an anticipated outcome to his surgery that didn’t come to pass. I was expecting him to joke about enjoying the food so much he wanted to GrubHub it when he came home. I was anticipating panicky phone calls from him at 3 in the morning, asking me to talk him through the pain. I was looking forward to him showing off to the nursing staff that he had brought his own condom catheters.

That is not how things went. He never woke up from surgery. I am grateful that he did not experience the nearly unbearable pain.

I sobbed for some time over the bag and its contents—and I laugh-cried over it, thinking of the “I dare you” look he would have given anyone who threatened to take his CBD patch and the gleeful way he would have told staff he brought his own condom catheters. And then I put the salt and pepper shakers in a kitchen cabinet, the CBD patch with the painkillers, and the condom catheters in a box I’ll eventually take to a medical supply donation center, and I took the gray polka-dotted bag to the grocery store.