Monthly Archives: November 2024

death, grieving

My Choice to Respect My Dead Husband’s Privacy

After his stroke, Tom spent hours at a small black desk facing our porch, a compromise when his wheelchair made actually getting outside too difficult. The desk became his command center, gradually accumulating the tools and supplies for his unlikely new hobby: knife sharpening. Who else would take up knife sharpening after a stroke? That was pure Tom, finding a quirky way to adapt to his new circumstances while still expressing his need for a little danger.

His approach to organization hadn’t changed with the stroke. The knife sharpening supplies sprawled across the desk, spilling onto nearby surfaces. Tom had never been known for neatness. One of my favorite stories about his disorganization involves him having a pile of papers on the dashboard of his van that was so tall he could barely see over it. He finally got motivated to dump the pile of papers only to realize later that—oops—the pile had included a money order.

The stroke had left him with Left Neglect, unable to process any sensory input from left of his midline. We found workarounds for reading and writing, but computer use proved especially challenging. Eventually, his laptop migrated to the left side of the desk—the forgotten side—and disappeared under layers of papers, books, and sharpening supplies.

After he died, I moved the knife sharpening equipment to the garage, where it still makes me smile, remembering his dedication to this improbable hobby. I kept his journals and books and look through from time to time. His left neglect shows up in the pages where he started writing in the middle and continued to the right margin. He annotated some of the books he was reading, but the notes are clustered only on the right-hand pages.  

The laptop stayed hidden in a drawer until last week, when I suddenly noticed the desk had drawers at all. Four years untouched. What might it hold? Pre-stroke emails, photos, browser histories—windows into who my husband was before his stroke. I plugged the laptop in and heard it whir to life but then I sat with my hands hovering over the keyboard for some time, trying to decide if I really wanted to know what was on the laptop.

I guessed incorrectly at the password and stopped.

I could keep guessing at the password. But I’ve handled all the practical matters of his life and death—the financial and legal matters have been settled. I have all the records and paperwork I need. What remains on that laptop belongs to him, to the private space of his thoughts and interests that existed separately from our shared life.

Tom was a man who valued his privacy. Before his stroke, we gave each other ample space for hobbies and friendships that belonged to only one of us. We were never a couple who did everything together and we valued our independence as much as we did our relationship as a couple.

Tom lost his independence completely with the stroke. He took that loss with incredible grace, but I watched how hard it was for him to need help with everything from getting dressed to using the bathroom. Now, 3 ½ years after his death, I can honor his privacy by leaving his laptop unopened. While part of me is curious about what I might find there, a deeper part knows that respecting the boundaries he valued in life is a way of honoring his dignity even after death. The laptop will stay in the drawer, holding whatever secrets it contains.

Aging, death, normalizing what should be normal

“I Am Not a Poor Thing!” How to Talk to a Dying Person

Last weekend when I visited Margaret, my hospice patient who’s in her late 80s and dying of COPD, she was having a challenging day—she was confused about whether it was day or night, how to use a fork, whether coffee is a drink or a food. I told her a bit about what I had been up to, and then she said she was tired and wanted to nap, so I helped her get settled into her lounge chair. As she was drifting off, a visiting relative who probably meant well said to me, “Poor thing.”

Margaret snapped out of dozing, straightening herself up in her chair. “Did she say ‘poor thing’?!” Her voice was strong and clear, her jaw set. All the sleepiness that had been creeping in for the past 20 minutes evaporated.  

“She did,” I confirmed.

“I am not a poor thing!” Margaret proclaimed.

Her relative looked surprised. “I didn’t mean anything,” she stammered.

“Well, I am not a poor thing!” Margaret said again.

The relative slunk into the kitchen to busy herself and Margaret and I sat in silence for a moment. “You didn’t like that, did you?” I said, and put my hand over Margaret’s. “Poor thing,” she muttered again angrily, before settling into her chair to nap.

I think the “poor thing” comment bothered Margaret because it tried to reduce her to something pitiful, something less than the complex, three-dimensional person she still is. It attempted to put her in a box labeled “dying person,” as if that were the only relevant fact about her. Even worse, the comment was made about Margaret to me but in front of Margaret.

Dying doesn’t strip us of our dignity, our personality, or our right to be treated as full human beings. When people respond to the dying with pity—saying things like “poor thing,” “what a shame,” “how awful,” and the like—they’re not seeing the whole person. They’re seeing only the illness, only the ending.

But Margaret is still Margaret. Yes, she’s dying. Yes, some days are harder than others. But she’s also the same woman who raised two children by herself, who read voraciously until her vision made it impossible, who loves animals and lights up when her grandson talks about his dog. She’s not a tragedy. She’s a person living the final chapter of her life with grace and authenticity.

So two practical lessons here if you’re spending time with someone who is dying:

  1. Talk to them not about them. Whether you think they can hear you or not, show respect for them by talking to them. I think Margaret was a little extra pissed about the “poor thing” comment because it was directed to me about her.
  2. See them for who they are: a person with a rich life behind them who is entering the final chapter. We all die—it’s normal. It may be sad, but it is not a tragedy.
grieving

Election Grief: When an Election Breaks Your Heart

When folks ask how I’m doing since the election, I find myself saying, “Hanging in there, all things considered.” And by “all things considered,” I mean watching over half the country vote for someone who thinks it’s okay to mock disabled people, treats sexual assault like it’s no big deal, plans to legislate from an antiquated concept of sexuality, and dehumanizes people who have made epic sacrifices to be here. Just like after my husband died, I dread being asked “how are you?”

This kind of hurt feels surprisingly like other kinds of grief, and that makes sense. Just like when someone you love dies, the election of a candidate who mocks your values and rejects your humanity can mean the loss of a dream. The future will not look the way I hoped. Things I thought I could count on now feel uncertain.

Folks often think of grief and disability as purely personal experiences, but when we live in a world that expects us to bounce back from loss in a few days of bereavement leave, or navigate buildings with no ramps, or explain our access needs over and over, those personal experiences bump up against political realities. Every time someone has to choose between keeping their disability benefits and accepting a job offer, that’s political. Every time a grieving person has to fight with insurance companies while planning a funeral, that’s political.

When we have to justify our need for accommodations or defend our right to grieve differently, we’re dealing with systems and structures that were built without us in mind. And the ways we respond to those factors is political. When we share our stories, when we advocate for change, when we refuse to squeeze our experiences into society’s too-small boxes, we’re doing political work. We’re saying, “Hey, there’s nothing wrong with us. There’s something wrong with a world that doesn’t make room for grief and disability as normal parts of human life.”

I’m treating my election grief similarly to how I treated my grief after my husband died:

  1. Acknowledging the sadness. The heartbreak is real. Belittling myself for feeling it won’t make it go away. I am turning toward my grief rather than away from it, practicing everything I learned from Doug Kraft about gentle strength after my husband’s stroke. I am feeling my feelings, even when they hurt like a gut punch. This is doing the work of grief. It’s not time that heals, it’s doing the work of grief.
  2. Connecting with others. I joined support groups and met other widowed people. In the aftermath of an election, this might look a little different. Last week, I attended an event for a visiting artist on campus that had nothing to do with the election, but it provided an opportunity to connect with colleagues engaged with art. I also attended an online meeting of the League of Women Voters, which let me connect with other people specifically around the election.
  3. Taking good care of myself. Sleeping, staying hydrated, and exercising are important, but setting and holding boundaries, especially as the holidays approach, is important. It’s been useful for me to reflect on how I want to engage with people who voted differently from me. I love them, but that doesn’t mean I have to spend time with them or tolerate offensive conversation or behavior. I can decline invitations, leave the room, or take myself home. I cannot change other people’s minds, but I can control how I respond to them.  

    I’m also holding boundaries around my news consumption: I do not check the news for the first hour that I’m awake. This helps me start the day thinking about my goals and priorities so that when I do check the news, I can see things within the context of what’s important to me, rather than the other way around.

Like any grieving process, grieving the results of this election won’t be linear and it won’t look the same for each of us. Give yourself and others grace. Keep putting one foot in front of the other. Sometimes the most radical thing we can do is to keep showing up.  

death

What Dying People Teach Me about Slowing Down

Time moves slowly for Margaret as she waits to die. She’s been expecting death to come for months, having outlived her medical team’s predictions by 8 months now. Her adult children try to get her to move faster as she goes about her day. If she hasn’t touched her snack in a few minutes, one of them will say, “Mom, take a bite of fruit.” A few minutes later, one will ask her if she’s finished with her snack. Her answer is almost always the same:

“I don’t think so,” said slowly and deliberately. She will not let other people’s rushing determine her pace, which is languid and relaxed.

When I help her sit in her push button recliner, she often calls out halfway through its recline, “Oh, wait, stop.” The reclining action is too fast. She wants it to slow down, but the chair has just one reclining speed, so she takes a break midway through the recline and then lets me know when she’s ready to continue reclining.

I’ve seen this resistance to hurrying in other people near end-of-life. I adore the paradox: those with the least time often understand best how to use it. Margaret, Shawn, and others are deeply present in the moment. They speak with measured words and seem to feel no urgency. Every simple act becomes a meditation – there is no rush when every moment holds its own completeness. A sip of water is something to savor. When I hold Margaret’s hand, she smiles contentedly and squeezes my hand, taking time to really connect before letting go.

This radical slowing down stands in sharp contrast to the pressure in the larger culture to be “productive,” to multitask, to do things quickly, efficiently, and do more and more of them. The urgency I feel to respond to texts or check the news headlines evaporates when I am with someone who measures time by something other than tasks completed.

After my husband’s stroke, it could take an hour to get him dressed. Rushing only slowed things down—an arm would end up in the wrong sleeve, a nearby lamp would get knocked over, or worst, we would argue—so I learned to let getting dressed unfold at its own pace. Instead of thinking, “I need to get out his clothes, make sure he’s ok with them, get his pajamas off, get his shirt on, get his pants on . . .” I focused on the first thing that needed to be done and tried not to think about the second thing until the first thing was completed.  

Getting his clothes out might take one minute or it might take 20, depending on his mood, the weather, how caught up I was on laundry (it seemed he always wanted to wear the clothes that were in the dryer at the moment rather than the ones that I had already folded and put away). On the days when I was distracted while we picked out his clothes by all the other things that needed to be done, I didn’t listen as well when he mentioned that he wanted to be bundled up in flannel, and then I’d be impatient when he resisted putting on the non-flannel shirt.

In the moments when I rushed Tom, I felt justified. It was usually because we had an appointment with a doctor or physical therapist and being late would mean forfeiting the slot. But rushing him meant forfeiting the warmth of being on the same team. I understand why I rushed him and at the same time, I wish I hadn’t.

We can only ever exist and act in the present moment. Our minds can speed ahead into the future, but we cannot. Being present means keeping your mind anchored in the here and now. When I let picking out Tom’s outfit take as long as it needed to take before moving onto the next step of getting him dressed, I was calm and present. When I let reclining Margaret’s chair take as long as it needs to take, I am calm and present.

I need to learn over and over that time doesn’t need to be managed or conquered. It needs to be inhabited, fully and without hurry, one moment at a time.