Tag Archives: grieving

grieving

When Your Grieving Friend Doesn’t Reach Out, It’s Not Because They Want to Be Alone

I’ve been reading a book by the U.S. Surgeon General, Vivek Murthy, called Together: The Healing Power of Human Connection in a Sometimes Lonely World. Murthy sees connection as vital to human life, impacting many aspects of health and wellness and he believes its absence leads to poor physical and mental health.

I’ve written many times about my experiences reaching out to others as I grieve my late husband’s death (see this, this, and this ). Murthy gives me some other ways to understand my experience.

Murthy explains that evolutionarily, if an early human got separated from their group, their likelihood of survival was slim. Early humans depended on the group for security and safety as well as gathering food. A human on their own needed to be on high alert 24 hours a day. That’s why being alone can trigger a stress response. Our brains think we are in danger even if our physical needs are being met because early in human history, being separated from the group was a physical threat to survival. In this way, extreme loneliness can feel like anxiety.

Murthy helped me understand a phenomenon I hear about regularly in the widow support groups I belong to. Many widowed people say that after an initial outpouring of support, everyone disappears and they are left completely alone. I think this happens for a number of reasons: people don’t know how to offer help effectively (read my pointers on this!), they don’t realize that grief never ends and that grievers need continued support, or their attention is diverted to another situation.

I’ve been that person in every one of these situations. Before my husband died, I offered help by saying “let me know how I can help” and assuming if I didn’t hear anything, the person was doing fine. I thought grief lasted from a few weeks to a few months, depending on the loss, but it didn’t occur to me that it went on indefinitely—even though I lost my own mother when I was 12, I didn’t realize how long grief lasts. I thought there was something wrong with me for feeling grief over her loss years after her death.

More recently, I’ve been the person whose attention is diverted to something else. A good friend lost both her parents within a few months and although I meant to be more of a presence in her life in the aftermath, I’ve had my own problems to deal with.

So it’s definitely not personal when the help fades away. And this is why I think that when we are in need, we need to let others know we are in need. But it’s hard. And here’s where Murthy helped me better understand what’s going on when someone won’t reach out for help. Besides it being just difficult to be vulnerable, as I’ve talked about before, the way humans have evolved has made the effects of loneliness negatively impact our abilities to reach out.

Murthy discusses how loneliness makes us less likely to trust others. He calls this the paradox of loneliness: “When we become chronically lonely,” he explains, “our threat perception changes . . . so we push people away and we see risk and threat in benign social opportunities.” So when we are most lonely, we are also most likely to avoid others and feel alienated.

I’ve definitely felt this. The more alone I am, the more being alone feels like the only safe and comfortable option. I think of it like muscle memory—the ways I automatically respond to other people when I am not lonely stop being automatic when I am lonely and require concerted effort. That effort makes it feel like too much work sometimes or even dangerous.

I’ve seen other widowed and grieving people pull away from others and then feel like they were abandoned even though they themselves pulled away. I now can understand that as the loneliness paradox Murthy describes. (If you’re curious about this phenomenon, I highly recommend chapter 2 of Murthy’s book.)

What this means is that if you know someone who is grieving and you haven’t heard from them in a while, don’t assume that’s because they don’t want to hear from you. So many people tell me they have held back on contacting me because they don’t want to be a bother, but not one single person who has reached out to me has been a bother. Not one, and I say this as an extremely introverted person who loves being alone.

People love being thought of. All you have to do is send a text that says, “Hey, I’m thinking about you. Interested in getting coffee?” You may not get an answer, and if you don’t, don’t take it personally. And then two or three months later, send another text. You may not get an answer to that one, and if you don’t, don’t take it personally. Continue this practice, never taking it personally if you don’t get an answer.

If you’ve been like me and gotten distracted from supporting a friend who is grieving, stop feeling bad and embarrassed to reach out. Just reach out. Send the text. It doesn’t matter how much time has gone by.

grieving

22 Months Out: Every One of My Late Husband’s Belongings Tells a Story  

I’ve felt great the last few weeks, able to focus on thoughts of the future for the first time in many months. I’ve been on sabbatical this semester and actually met all my sabbatical goals early. This gave me some unexpected time to start trying to make sense of my late husband’s pride and joy, the garage, which he dubbed Garage Majal.

The task of going through the things of someone who died seems to go on and on. My husband died 22 months ago and I am still cleaning out the garage. A friend went through the garage soon after Tom died and collected and sold the valuable tools. His brother got the motorcycles.

What’s left is rafting and camping gear, random motorcycle stuff, equipment related to his many hobbies, a foosball table, and a leather couch. There’s a story behind each item, which makes going through them, let alone parting with them, very difficult.

Many times when I’ve gone out determined to organize the camping gear, I’ve been overcome by tears instead. I’ll touch the tent and remember how thrilled I was the first time we camped together and I realized he had a big tent. (No, that’s not a euphemism. 😊 I’m somewhat claustrophobic and prefer to sleep under the stars with no tent at all; the next best thing is a big tent.) The sleeping bag still has dog hair in it from his last road trip with one of our dogs—thinking “last road trip” immediately brings a lump to my throat.   

Opening the cabinet where his motorcycle gear hangs always knocks the breath out of me. Seeing his leather jacket triggers so many strong memories: the time we rode a motorcycle to Oregon with his cousin, the many times we took the motorcycle with a sidecar out on a weekend night and made a splashy arrival somewhere, me emerging from the sidecar in heels and a dress, and more.

I can’t look at the foosball table without remembering the day Tom came home from work in the middle of the day positively giddy because he had driven past a yard sale in the company truck and scored a foosball table for $20. He had to drop it off at home to avoid going back to work with a foosball table in tow. I don’t play foosball myself, but as long as I have room for it in the garage, the foosball table stays.  

Although I’ve been out to the garage hundreds of times since he died, I still make new discoveries. Last week I noticed a gray sleeve hanging down from a shelf that is high enough I hadn’t seen it before. It was the sleeve to a dark gray hoodie I remember him wearing on our last camping trip together. One pocket was full of dog treats.

Finding the hoodie set off a weekend of sobbing. My daughter came over one night to walk the dogs and found me immobile on the couch. She stayed with me for a few hours, first holding me on the couch, then sitting on the kitchen floor with the dogs and me. We reminisced about the many adventures Tom brought to our lives: rafting and camping trips, making us dog people, living in a trailer park. We remembered my trips with him to Cuba and Europe and him putting gender neutral signs on the porta potties on a construction site he worked on where pretty much everyone else who worked there had a MAGA bumper sticker. We laughed about how nobody ever messed with him except for “some old cowboy in Wyoming,” and Tom allowed that he had that coming because he had disparaged the old cowboy’s horse.

It’s still hard to believe that this man who lived life with so much gusto could be gone, and there are still days where I feel like I will never be whole again, but they pass and I do feel whole again.

Someone posted in one of the Facebook widow groups a few weeks ago, “When I post about my husband, it’s not to get sympathy, it’s to keep his memory alive.” That is one reason I blog and am working on a memoir: as long as I keep writing about that man who lived life with so much gusto, he isn’t really gone.

anxiety, grieving, normalizing what should be normal

Recognizing My Own Toxic Positivity

How could being positive ever be toxic? Well, when it makes you feel pressure to squelch any emotions that could be seen as “negative,” like sadness, grief, or fear.

I’ve had my own struggles with toxic positivity. A student commented in an anonymous teaching evaluation fifteen or so years ago that I was “aggressively positive.” I was used to being noticed for my optimism, but the word “aggressively” caught my attention. While the rest of the student’s comments were positive or neutral, that one stuck with me and I turned it over in my mind for a long time. Being “aggressively positive” didn’t feel like a compliment.

I prided myself on not complaining, and over time my definition of complaining became so broad that it encompassed even neutral observations. I began to recognize in myself resistance to sadness and other emotions I saw as negative. When friends and students shared hard news with me, I noticed a strong impulse to reframe what they told me in a more positive way. Sometimes the reframings were productive, like when I helped a student who was fired from their job recognize it as an opportunity to find a job that was a better fit.

But other times, my reframing was a denial of the gravity of a situation; a student who was broken up with by their partner wasn’t helped by my reframing of it as a chance to explore what they wanted. What that student needed in the moment was for me to acknowledge their pain. It took me a long time to get comfortable with acknowledging pain.

I think my “aggressive positivity” grew out of a fear that people wouldn’t like me if I was negative, coupled with an inability to deal with my own complicated emotions. Dismissing all things negative—either by reframing them or simply ignoring them—allowed me to come across as ceaselessly positive and to deny that I ever felt anything upsetting. I used to laugh about my ability to put a positive spin on anything, but now I see it as a defense mechanism.

What I’ve learned is that reframing pain, sadness, and other emotions I used to see as negative into things I saw as positive—opportunities was my favorite—was just a way to avoid the difficulty of the “negative emotion.” I still felt pain and sadness, I just didn’t talk about it . . . and the less I talked about it, the harder it was to talk about it. My vocabulary around emotions became very limited.

Since my husband’s stroke, I’ve taken a different tact. I’ve chosen to embrace the hard parts of life with the same energy I bring to the easy parts. I’ve learned what it means to turn toward the emotions that used to frighten me.  I’m expanding my vocabulary around emotions. When I have a challenging day, I can say I was sad, sorrowful, anxious, caught up in memories, reflective, grief stricken, heavy hearted, and more—and each of those choices means something distinct to me. None of those terms is bad or even negative—they are simply descriptions of normal emotional states.

All the time I find the topics I think and write about—disability, caregiving, death, and grief—to involve elements of both sadness and joy. In my “aggressively positive” days I would have acknowledged only the joy. Now I acknowledge the sadness, too. Ironically, what kept me from acknowledging the sadness in the past was fear of the sadness, but acknowledging it actually makes it feel less scary.

Going through the experience of my husband’s stroke, becoming his caregiver, and then being widowed has given me a new appreciation for the acknowledgment that sometimes life just sucks. And that’s normal.

I was telling a new acquaintance recently about my husband’s stroke and they said, “That sounds like it must have been intense. What was that like?” I appreciated their response because it both acknowledged the complexity of the situation and invited me to say more about it. They didn’t try to change the subject, lighten the mood, or put a positive spin on things.

I was with another new acquaintance recently when I unexpectedly began crying. Their response was perfect—they asked me what I needed. They didn’t seem shocked by my tears or act like there was anything wrong with me.

These two people demonstrate how simple it can be to normalize events and emotions that are, in fact, normal, but that we often shy away from.

grieving, life skills

How to Write a Sympathy Card

When my husband died, I got a lot of sympathy cards, and every single one of them meant something to me. For weeks I let unopened mail pile up on the dining table, making an exception only for cards in hand-lettered envelopes. Those I read eagerly.

I loved the cards from people who had known my husband; knowing he would be missed seemed like validation of the heartbreak I felt. I loved equally the cards from people who hadn’t known my husband; the acknowledgment of my pain made me feel seen.

Many nights I sat on the floor with the pile of cards I’d received and read them, sobbing but feeling the embrace of all the people who had sent the cards. I still do this occasionally, nearly two years after he died.

Before my husband died, I sometimes wondered if I should send a sympathy card to someone. I wondered if I knew the person who died or the person who was grieving well enough to say anything of value. Now that I’ve been on the receiving side of those cards, I know that the answer is always YES.

If you are putting off sending a sympathy card because you don’t have time to get to the store, don’t go to the store—just write your condolences on notebook paper or a scrap of something. Really. The card doesn’t matter—your thoughts do. Some people sent cards that I’m sure they put a lot of thought into choosing, cards that featured Bible verses or a saying that they probably imagined would comfort me. The truth is, I almost never read any of the pre-printed messages. I did this for several reasons:

  • Lack of interest in truisms about loss and grief. The genre of sympathy card is not terribly original, and I wasn’t interested in cliches telling me that loss is hard or that death is a part of life. Duh. I knew that. I didn’t need the Hallmark Company to give me that information. As soon as I saw fancy embossed script lettering, my eyes glazed over.
  • Impatience to read the handwritten, personalized part. My interest was solely in the thought the sender was sharing with me.
  • Lack of contrast. On a practical level, many cards featured pale lettering on a white background or white lettering on a light background, which I can’t see.

The card itself doesn’t matter. Which means you should write something, not just sign it and stick it in the mail. (Although, frankly, those cards were nice to get, too, so if all you can muster is a signature, I’d say go ahead and send it.)

What to write?

My favorites were the cards that included stories about my late husband—little anecdotes about him saying something funny, doing something outrageous, wearing something silly. People told me what they would most remember about him or what they would most miss. Some people tucked longer handwritten notes into the cards they sent because they had so many stories to share. A few people included photocopies of poems they thought I would appreciate.

Grief is overwhelming and blurry. The cards that included something specific about my late husband made the blurriness disappear for a moment. I could focus briefly on the particular memory or quality they shared. A note that mentioned the canoe Tom built himself made me remember the canoe in our garage, Tom deciding to sell it, and then deciding to give it away to a man with a son who would appreciate it enough that Tom no longer cared about the money. A note that mentioned the colored lights in Tom’s garage workshop briefly transported me to the time I woke up in the middle of the night and Tom wasn’t in bed. I couldn’t find him in the house, so I went out to the garage, where I found him tinkering with a motorcycle as the lights shifted from blue to green to purple.

The next time you need to send a sympathy card, consider mentioning

  • what you will most remember about the person who died. Maybe it’s a quality of theirs, a particular outfit, a memorable catch phrase. Perhaps they taught you something or recommended a book to you that made a difference.
  • what you will most miss about the person. Even something tiny is worth mentioning: seeing them every evening when you walk your dog, hearing them trigger their car alarm every Monday morning.
  • a brief anecdote. This only needs to be a sentence or two. You can just say, “I’ll never forget the time . . .” It doesn’t have to be detailed.

If you didn’t know the person who died, talk about what you know from the person you are writing to. In the cards I got, people said things like “I remember you talking about your epic motorcycle trips with Tom” and “I remember noticing the photo of the two of you together in the snow on your desk.”  

Consider what is most likely to comfort the person you are sending the card to. This may be something other than what would comfort you. If you are very religious but the person receiving the card is not, a non-religious card may resonate better and actually provide more comfort, and vice versa.

Stay focused on the purpose: to make them feel less alone. You don’t have to “fix” anything for them, make them laugh, or write the best card every written. Even the cards I got that had nothing but a signature made me feel loved.  

Phrases to avoid:

  • Any sentence that begins with “at least,” such as “at least he’s no longer in pain” or “at least she’s now with [her dog that died last year].” These words minimize the pain your recipient is feeling, whether than is your intention or not. You can say “I’m glad he’s no longer in pain” or “I imagine her playing with [her dog that died last year].” Do you see the difference the phrasing makes?
  • “Let me know what I can do.” This seems helpful, but in actuality it puts one more burden on the recipient—now on top of grieving, they have to be a project manager. For better ideas about how to offer help, read my post.
  • “I can’t imagine.” Sure you can, and saying you can’t puts distance between the recipient and you. The point is to close the distance not increase it.

Finally, I’m not a fan of wishing people strength when they are grieving.

grieving

Divorced versus Widowed: What’s the Difference and Why Does It Matter?

Losing a partner, whether it is through divorce, breakup, or death, is disruptive. Any kind of major relationship break is considered a high stress event by mental health experts. I don’t see much value in ranking them, finding one to be easier or harder than the other, but several people have asked me how they compare and I do think understanding the similarities and differences is helpful in grasping why widowed people behave the way they do.

There is quite a bit of overlap. Having experienced both, I can attest that they both suck and I hope to never experience either again. Both involve tremendous loss: loss of a relationship and loss of identity certainly. With both, I went from being a wife to something that was less defined by society. I had to recalibrate who I was and what my role in the world was.

With both, I experienced grief for the death of all the hopes and dreams my partner and I shared.

I also found both to be expensive. Most people understand the financial hit of divorce, but there seems to be little understanding of how expensive death is. People have asked me about collecting my late husband’s social security, but I’m not eligible for it. There was no financial windfall beyond a life insurance payout that helped but didn’t make a significant difference in my finances. Losing my late husband’s monthly disability payments, and before that, his paychecks, made a huge difference in my finances.

A few people have suggested to me that being widowed is essentially the same as being divorced. I think this view overlooks some very consequential differences:

  • How it impacts kids. When my ex and I split up, our daughter was devastated but she wasn’t also mourning a parent. When my late husband died, my daughter and his son both lost a parental figure. Both kids were adults and I found it challenging to support them while going through my own loss. Supporting young children who have been bereaved is even more complicated (shameless plug for a friend’s memoir: Charlotte Maya’s moving memoir, Sushi Tuesdays, about raising two young boys in the wake of her husband’s suicide describes the intense parenting she had to do alone).
  • The finality of death. You may not want to, but with a divorce you could reach out and re-establish a relationship with your ex. But a dead spouse is gone forever. My ex husband is alive and well and we are friends, but my late husband is gone from this earth.
  • Getting rid of stuff. In a divorce, the ex typically takes their stuff with them. When the spouse dies, the surviving spouse has to deal with all the stuff. For me, that process goes on and on. There are things that can be given away or sold, but there is a lot that has sentimental value and triggers strong emotions. Last weekend, for example, I came across my late husband’s snow boots. He was perpetually cold and always made a big deal about how warm those boots were. It makes sense to give them away, but that means saying good-bye to one more piece of him.
  • An element of choice. Divorce was a choice my ex and I made because we were both better off not being married to each other. I am not better off without my late husband. My late husband and I not only brought out the best in each other, things were getting better in that regard. I miss him every day.
  • Public opinion. Moving forward after divorce is seen as a triumph. This is not the case for widowed people. I read every day on the Facebook widow groups about someone being told they’re moving forward too quickly or too slowly. Besides, I don’t want to move forward from a relationship that was profoundly nourishing.
  • Availability of peers. When I got divorced, it was easy to find other people my age who had been divorced. It was much harder to find widowed peers, which is why I was so grateful to find the Facebook groups for widows I mention all the time.
  • Obligation to preserving a legacy. Many widowed people feel an obligation to maintain some sort of legacy of the person who died. I feel like it’s important to keep talking about my late husband as a way to keep his memory alive. Someone who is divorced has no analogous responsibility.
  • Viewing divorce as a failure. I don’t happen to consider my first marriage a failure, but I’m aware that many people view any marriage that ends in divorce that way. On the other hand, being widowed doesn’t seem to be accompanied by any such judgments.

Of course, what I’ve said here isn’t universal. Someone who didn’t want their divorce might feel differently. Someone who was widowed in an unhappy or abusive marriage might have a difference experience.

Supporting someone either way may be similar. Ask what they need, offer specific help, let the person grieve the loss in their own way.

Buddhist life, grieving, mental illness

Welcoming Depression Back into My Life

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

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

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

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

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.