Monthly Archives: June 2023

grieving

I Talk to the Dead

It astonishes me regularly that even while I was reeling from the death of my husband, life continued on. I felt like the world should stop for a bit and give me a chance to absorb the blow before moving on. But that’s not how life works and so there were home repairs that needed to be made, health crises of other loved ones to attend to, my own health issues, and more.

A bitter irony of being widowed is that when my husband died, the first person I wanted to talk to about it was my husband. And then when life piled on the house repairs and health issues, I really, really wanted to talk to him.

And so I did. I continue to talk to him, although he’s been dead for two years now. The conversations are more one-sided than they used to be (but only a bit—one of his complaints about me was that I like to have the final word), but I talk to him about everything still. Sometimes I’m talking out loud and other times I’m having the conversation in my head.

Sometimes I walk to the bench commemorating him for the conversation, but more often, I am in our house, speaking aloud to the ether, looking up as if he were in the ceiling, or directing my voice toward the urn on the mantle or toward the ring I wear that has a bit of his cremains in it.

I doubt that he can hear me. I like to imagine that he has moved on to another adventure, one that I can’t even fathom, bound as I am to this life at the moment. But just as I remain deeply connected to him, I hope he retains a connection to me and the love we shared, even if he doesn’t understand what it means in his current context.

Part of me knows that when I’m talking to him now, I’m talking to the version of him I remember, the version that lives on in my heart. Often, when I tell him about something I’m struggling with, hearing myself say it out loud helps me imagine what his response would be, and that is comforting. I’ve internalized his voice and his way of thinking.

“I have to have a surgery I am really nervous about,” I tell him.

“Well,” I hear him say inside my head, “You gotta play the hand you’ve been dealt.”

“I don’t want to deal with the garage,” I confess to him.

“Go in there and show that garage who’s boss,” he says, matter-of-factly.

I don’t always follow the advice he gives me in these imaginary conversations, just as I didn’t when he was alive, but the conversations make me feel supported and connected to him. Lots of times they make me laugh—a phrase I had forgotten he used will come up or I’ll be reminded about something he used to tease me about.

Every time I pay more for something than I know he would think was reasonable, I hear him calling me “a Rockefeller.”

When my sabbatical ended, I told him I didn’t want to go back to work and I heard his voice in my head: “Corny Cornelius never got to be president.” That was his favorite conversation-ending non-sequitur. I still don’t know what it means, but it made me smile.

One conversation I have regularly with him nowadays is about me taking dance lessons. We loved dancing together and talked for years about taking lessons but we never went beyond doing goofy video lessons a few times before his stroke. After he died, I thought I’d have to wait until I had a partner to ever even entertain dance lessons—and then I thought about what I would tell someone else in a similar situation: “Are you sure you need a partner?” Turns out you don’t and I’ve been taking ballroom dancing lessons for a few months now. After every lesson, I tell Tom about it. “I’m learning to foxtrot!” I tell him, or “Weight-shifting on the spot turn is getting easier.” And always, “I wish you were here to dance with me.”

I tell him all about my experiments with not killing plants. In fact, I keep up a constant stream of chatter directed toward him while I’m weeding or training the vines.

I wish I had had imaginary conversations with my mother after she died when I was 12. I no longer remember her voice or her way of seeing the world. I have just a few strong memories of her. I cannot imagine how she would respond to any situation I might want to talk to a mother-figure about. She was a great gardener, but I have no idea what her response to my vine-training might be. I don’t know if she danced or knew why Corny Cornelius didn’t get to be president.

I remember filmmaker Kirsten Johnson saying on Anderson Cooper’s podcast that after a person dies, we can still have a relationship with them and even change our relationship with them. This makes me think that it’s not too late to start talking to my mother, getting to know her now.

caregiving, grieving

Two Years Out: Missing My Husband but not Lonely for Him

I’ve now survived two years without my love, my husband Tom. Two years seems absolutely impossible—it somehow feels simultaneously impossibly short and impossibly long. I wonder how it’s possible that the world has continued on without him in it. So much has happened since he died—how can it be only two years? And also—he was just here, I was just talking to him, we were just laughing about some foolishness of the dogs, I can still hear his laugh and feel his ribs against my arm, how can he be gone?

The most surprising realization I’ve had this anniversary is that I am not lonely. I’ve been “alone” now for two years, and I definitely felt lonely for a long time. I was surrounded by people who were available to me, but even when I was with them, I felt lonely.

My husband and I spent 12 years together, day in and day out. The rhythm of my life was built around us. Before my husband’s stroke, we began our days together around 5 a.m., drinking coffee and talking about the upcoming day. After work, we’d sit on the front porch or the couch with cocktails and share funny stories about our days. We found the contrasts between my work in academia and his in construction endlessly amusing (one example: I began meetings by reviewing the agenda, he began by saying, “Alright, listen up, dick heads”).

We ate dinner together, and even when we engaged in different activities in the evening—usually Tom tinkering in his Garage Mahal and me reading or working in the house—we would periodically wander into the other’s space to share a frustration or anecdote. And we ended each day together in bed, laughing, cuddling, loving each other.

After his stroke, our day-to-day activities were even more intertwined because he relied on me for so much. We were nearly always in the same room or at least within sight-distance of each other.

And then it was all gone. The house, the garage, the bed—it all felt empty. The days lacked structure. I still woke up at 5 a.m. out of habit, but not having someone to talk to, as I did before his stroke, or someone to kiss on the cheek as he went back to dozing, as I did after his stroke, made me feel like I was free-falling from the moment I got up.

It felt lonely. I wasn’t lonely in the way I’ve always understood loneliness before. I was lonely for Tom. Being with others didn’t assuage my loneliness one bit because I wasn’t lonely for company—I was lonely for Tom and the life we shared. Not just the man or the activities, but the entirety of what we had together—the spoken and the unspoken, the smells and tastes, the feelings of security and acceptance and love that permeated everything.

My life felt empty, not because it was empty, but because it wasn’t full of coffee at 5 a.m. with my husband, funny stories about his work, and him coming in from the garage smelling like sawdust. There was no more knowing look on his face when I considered saying something snarky and then thought better of it. There was no more of his hand around mine.

That loneliness lasted through the first year after his death and into the fall. At some point around the 17th month, it started fading. It faded so gradually I didn’t even realize it was happening.

And then this past weekend, I realized I hadn’t felt that aching loneliness in a while. I miss my husband like crazy and I wish every day that he was still here with me, but the loneliness I have felt in the last six months or so has been fleeting, lasting a few hours at a time.

I’m certainly not the person I was before he died, but I think I am at the point in this journey where people say “things are back to normal.” I don’t know what “normal” is, really, and I like to think I’ve never lived a normal life. But I do like not feeling like I’m free-falling.

I’ve established new routines that feel comfortable. I’ve survived challenges that terrified me (every house repair and maintenance task) and now I at least feel confident that the house will not collapse on me. I expect more loneliness but I also know that it won’t last forever.

anxiety, grieving

Trying to Reason with My Own Brain during a Panic Attack

1 Comment

Sunday is the 2-year anniversary of making the decision to take my husband off life support and Monday is the anniversary of his death. I call the two back-to-back days “the d-days.” The first d-day is also my birthday, and this year it’s Father’s Day, too, so a real doozy of a day.

I’ve been giving these dates on my calendar the side eye for a while now. A few months ago, I arranged to spend the Friday night and Saturday at my sister’s, both to low-key celebrate my birthday and to not be alone, and I made plans to be with another widow on the evening of my birthday.

Once I made all those plans, I largely put the dates out of my mind, but I was vaguely aware that they were getting closer. In the meantime, I went about my life as usual, which has been pretty wonderful lately. I’m back at work after a very rewarding sabbatical, I’m surrounded by supportive, generous people, and I’m just generally feeling happy and optimistic.

Yesterday was a particularly lovely day. I spent time with my sister and then later had dinner with my mother-in-law, her husband, and my daughter. I spent most of the day laughing. When I went to bed, I was feeling very loved and connected, so I expected to fall asleep blissfully.

Just as I was about to drift off, right in the middle of a deep breath, there it was—panic. Suddenly I was kicking the blankets off, sweating, unable to catch my breath. My body reacted as if I were being physically threatened in the moment: my hands were in fists, my whole body ready to spring into action to thwart an attacker. Only the attacker was my own thoughts:

My husband is dead and I will never be with him again, I thought. I will be alone for eternity, my brain continued. He’s alone in the dark crevasse of death and eventually, I will be too, my brain told me, delivering the coup de grace.

These are not even thoughts I believe. When I’m not having a panic attack, I feel my husband all around me and I feel deeply connected to him still. I don’t think of myself as being alone and I have (at least for an introvert) a very active social life. I don’t normally feel that death is a lonely place—like many Buddhists, I believe our spirits live on beyond our physical bodies.

I reminded myself of this, but my brain remained convinced that I was in danger. I tried tapping and listening to a meditation. I reminded myself of the Pierre Teilhard de Chardinquote I love: “we are spiritual beings having a human experience.” I reminded myself that everything is temporary and the panic will pass.

My brain wound itself tighter into panic, swatting each of my calm reminders away.

My brain said, “You’ll be alone forever.”

I patiently responded, “Nothing lasts forever.” And “I am not alone.”

But still, my heart pounded, my legs shook, and my breathing remained shallow.

I read recently that the best way to protect yourself in a fall is to relax. This idea aligns with the concept of relaxing into difficult emotions. I tried to relax into my panic. I said out loud, “Hello, panic, my old friend. I know you are trying to protect me. Thank you for looking out for me, but I am ok.”

My panic responded with a snarl and bared teeth, and I took a Lorazepam. I consider Lorazepam a last resort because of its habit-forming properties (my mother was an alcoholic and daughters of alcoholics are more likely to become addicts, so I’ve been on high alert regarding addiction my whole life) but if I wait too long to take it, it doesn’t help me sleep. A classic Catch-22 situation. So I have to declare the situation “a last resort” a little earlier than I would usually like, but once I made that call, my panic eased a bit just from having the decision made.

This was my first panic attack since February, which is the longest I’ve gone between attacks since I started having them.

This week’s to do list now includes being extra kind and patient with myself through the d-days and celebrating the win of going almost four months without a panic attack.

Accessibility + Dis/ability

What You Probably Don’t Know about Non-Apparent Disabilities

I once harassed a woman who had parked in a disabled parking spot at a store. She looked non-disabled to me and walked hurriedly into the store. I waited for her to return to her car and then made an obnoxious remark about her having a fake parking permit.

I wish I could say I was drunk when I did this, or that I was put up to it by someone else, but no, I did it of my own volition and felt quite righteous about it for a long time afterwards. In my mind, I was defending disabled people.

In reality, I was harassing a disabled woman and probably adding a huge load of anxiety to what might have already been a tough trip to the store.

I now realize that the woman I harassed likely had a non-apparent disability. I’ve heard the term “invisible disability,” but a colleague taught me that it actually makes more sense to call them “non-apparent disabilities” because they aren’t invisible to everyone. My own vision impairment, for example, is invisible to a lot of people but not to me or my loved ones.

People with non-apparent disabilities are often targets of the kind of harassment I subjected the woman in the parking lot to.

I mistakenly thought that disability was stable and apparent. It took my becoming disabled myself and then being the caregiver of my disabled husband to really understand how fluid and non-apparent disability can be.

I recently spent the day with a companion who has a non-apparent chronic illness. We went to a museum together, and although they walked into the museum, they decided to use a complimentary wheelchair to navigate the exhibit to conserve their energy. Not having to summon energy to walk allowed them to fully concentrate on the exhibit without tiring themselves out. Anyone watching my friend walk into and out of the museum might have thought they were using the wheelchair gratuitously.  

Disabled people sometimes talk about not having enough spoons to do something. Imagining spoons as a metaphor for units of energy comes from Christine Miserandino, who has lupus. Her 2003 essay, “The Spoon Theory,” describes her explaining to a non-disabled friend that when someone has a chronic illness, they start each day with a limited number of spoons and everything they do means subtracting one or more spoons from their initial bunch. They need to make choices throughout the day about how to use their spoons.  

My friend using the wheelchair in the museum allowed them to put their limited number of spoons toward processing the exhibit and then socializing with me. If they had chosen to walk through the exhibit, there would have been fewer—or maybe no—spoons left for other tasks of life: getting home safely, making and eating dinner, responding to text messages, etc.

My low vision means that navigating new spaces takes a lot of spoons from me. Most people can see without using any spoons, but every time I’m in a new space, I need to use a few spoons to figure out where the dangers are lurking—the poorly marked staircase, the column painted the same color as the wall beyond it, the invisible-to-me screen door.

Today is a pretty typical day and already I’ve used quite a few of my spoons. When I woke up and noticed it was overcast, I knew I was already down a spoon. If it started raining, I’d be down another one, so I knew I had to conserve spoons just in case. Luckily, the days are long right now, but from November through March, I’m down a spoon because of the short days.

I’ve already used

  • two spoons because my vision is inexplicably blurry lately.
  • one spoon trying to figure out where the crosswalk was near a construction site on my way to the bus stop. I made the choice to walk an extra two blocks to skirt the entire construction site but be able to see where I was going.
  • one spoon trying to figure out why a website wasn’t processing my request to make a purchase. I ended up abandoning the purchase.
  • two spoons reading my kindle with my distance glasses on the bus because the bus was full and I was afraid I’d be jostled while changing into my reading glasses and if I drop them, I’m useless. This poor choice meant I couldn’t read for the first hour I was at work because my eyes were too strained.
  • one spoon making the decision to not finish answering an email that requires me to dig up a report. My vision was starting to double and I need to conserve it so I’ll be able to proofread a draft an employee gave me later.

It’s 4:30 pm and I’m down at least eight spoons. That’s probably enough to get me through the rest of the day, but the trickiest thing is that I never quite know how many spoons I started out with. I like to think I start with ten, but some days I am suddenly out—my vision goes double or everything is blurry. I don’t know why I got fewer spoons those days, but once they’re gone, they’re gone.

Whenever I hear colleagues talk about students “taking advantage” of accommodations they don’t “need” or “gaming the system,” I know the righteous indignation they feel—that’s what I felt when I harassed the woman in the parking lot.

Now I know better. And now you do, too.