Monthly Archives: March 2024

Accessibility + Dis/ability, caregiving

How to Talk with Disabled People

Before his stroke, my husband was the kind of man to walk into a room and instantly own it. People deferred to him because of his confident swagger, his understated confidence, and his uncanny ability to cut through bullshit without shaming the bullshitter.

After his stroke, when he used a wheelchair, spoke slowly, and experienced confusion, disorientation, and memory lapses, it broke my heart to see how differently the world treated him. His friends and loved ones didn’t treat him any differently, but the doctors and medical professionals we saw on a regular basis often spoke to me rather than him. Many receptionists would look right past Tom and ask me, “Who are you checking in?”

I tried to redirect the conversation. For example, if a doctor asked me how a prescription change was working for Tom, I would say, “Tom, what do you think of the new prescription?” Sometimes the doctor would take the hint and start talking to Tom but often I had to continue redirecting questions to Tom throughout the appointment. It was a constant battle to get many of the medical professionals to address him directly.

He did have a few wonderful health care providers who were very respectful. His neurologist, in particular, always spoke directly to Tom, listened carefully without rushing him, and asked clarifying questions to make sure he understood what Tom was telling him. His physical, speech, and occupational therapists all addressed him and made an effort to get to know him.

Other health care practitioners were sometimes shockingly disrespectful. I remember one who pulled Tom’s pants down to give him a shot in his knee without ever speaking directly to Tom or telling him what he was about to do. I was so taken aback I couldn’t collect myself quickly enough to say anything, and I apologized profusely to Tom for my failure to say anything. It was a constant struggle.

This struggle is why I was so excited to come across a video produced by the Special Olympics called “How to Speak with People with Disabilities.” The video focuses on people with intellectual disabilities but the basic advice it puts forth applies to people with any type of disability.

The video features several people with intellectual disabilities talking about how they want their health care practitioners to interact with them. They mention that they want their health care practitioners to get to know them, to make eye contact with them, and to talk to them rather than their caregiver. These are basic practices I would hope any medical professional would use with any patient, with or without disabilities, but I know from my own experiences and those of my husband that it doesn’t happen often enough.

The video emphasizes talking with people with disabilities rather than talking to them. That preposition is crucial: talking to people positions the health care practitioner as an expert imparting information to a patient, while talking with people positions the health care practitioner and the patient as partners and equals.

Any time you talk with a disabled person, give them the same respect you would give anyone else. Treat them with dignity. Speak to them, not their caregiver. Get to know them. This goes for faculty talking with disabled students, health care practitioners talking with disabled patients and clients, and anyone else communicating with a disabled person.

grieving

Grief, Sleep, and a Heavy Box

For most of my adult life, I have been a great sleeper. I usually have had little trouble falling asleep and I’ve stayed asleep for most of the night.

After my husband’s stroke, the stress and what seemed like an infinite number of unknowns exhausted me and I continued to sleep well at night but I awoke exhausted and dragged my way through each day. That continued for the first seven or eight months after he died.

Then I had a period of not being able to sleep at all. Intense anxiety kicked in and every time I was about to drift off, my entire body would go on high alert and I would leap out of bed, gripped by dark fears. After a couple months of that, my doctor prescribed Lorazepam, which helped me start sleeping again. It took six months to get my anxiety to a point where I could at least get decent sleep a few nights a week.

In the year and a half since then, I’ve gone from needing eight hours of sleep a night to feel rested to needing nine or ten and then I often feel a wave of exhaustion around midday. Many days I take multiple naps, sometimes adding up to two hours a day or even more.

Lately I’ve been noticing that it’s often emotional tiredness that makes me want to nap. I think my body is actually getting enough sleep, but the effort it takes to keep moving forward when my husband is dead is exhausting.

When he first died, I did everything with the thought “Tom is dead” in mind. I would think, “I’m showering (Tom is dead)” and “I’m eating lunch (Tom is dead).” Over time, the prominence of that thought faded, but there is still a weight I feel like I’m carrying around and that is what ties me out.

I first read Jack Gilbert’s poem, “Michiko Dead” in 1999 and the image of a person carrying an awkward box that can never be put down stuck with me. These last few months, my mind has gone over and over again to that poem. I think I’m tired all the time because of that box of grief that can never be put down.

My thoughts now aren’t “I’m writing (Tom is dead)”—they are more like “I’m writing (why am I so tired . . . oh, it’s the box I’m carrying)” and that box is grief for my husband. Carrying it means I’m always working. The box is invisible to others and I’m so used to carrying it, I forget sometimes that I’m carrying it—but it still tires me out.

I try not to judge myself for all my napping. When the voice in my head tells me I’m being lazy, I try to respond, “No, it’s fatigue from carrying this box around. It’s ok to nap.”

Michiko Dead

BY JACK GILBERT

He manages like somebody carrying a box   

that is too heavy, first with his arms

underneath. When their strength gives out,   

he moves the hands forward, hooking them   

on the corners, pulling the weight against   

his chest. He moves his thumbs slightly   

when the fingers begin to tire, and it makes   

different muscles take over. Afterward,

he carries it on his shoulder, until the blood   

drains out of the arm that is stretched up

to steady the box and the arm goes numb. But now   

the man can hold underneath again, so that   

he can go on without ever putting the box down.

grieving

My husband’s death makes everything he touched feel precious to me

The most beautiful room in my house is undoubtedly the guest bedroom. It was the last room my husband remodeled before his stroke, getting it done just in time for a friend’s visit in January 2020. It’s a small room that had served at different points as an office, my daughter’s bedroom, and a storage space. It was cramped, with inadequate light from a small window, and inadequate storage from a shallow closet. Before the remodel, the walls were striped in multiple shades of pink and turquoise, which gave it a jaunty circus vibe that competed with the smallness and darkness of the room.

Tom took it all down to the studs, redid the drywall, built a new closet with beautiful wood and mirrored doors, added a brick façade to the wall with the window, replaced the window with a bigger one and built a desk in under the window, and replaced the door with French doors opening onto our dining room so that the light from the dining room spills into the guest bedroom.

He painted the new walls a perfect white, did some fancy trim technique that I don’t know the term for but everyone who knows anything about trim work who sees it is impressed, and built little shelves in around the window for displaying artwork.

I remember him doing the fancy trim work, folding his tall lean body down to crouch on the floor to measure and place it, a pencil behind an ear and his glasses pulled down to the end of his nose. I’ve never known anything about construction and found his casual precision and mad skill enchanting. He could eyeball something to within 1/16 of an inch with an air of nonchalance.

He had coverings custom made for the glass in the French doors but they weren’t ready before our January guests arrived, so as a temporary measure, he covered the glass with blueprints from a job he had worked on. After our guests left, the coverings were done, and then he had a stroke and I forgot about the coverings. The blueprints have been covering the glass now for four years.

A couple weeks ago, someone asked me about the blueprints—a reminder that blueprints are not typically considered window décor. A few days later, I came across the coverings and wondered if I should put them up. I love seeing the blueprints every day and have no idea how to hang the coverings, so it was easy to decide to just leave things as is for now.

I use the room everyday. I keep the French doors open and move in and out of the guest bedroom throughout the day. I use the closet in that room as a coat closet, so I’m in there every morning and evening to get a coat when I walk the dogs. I read in there. I use the desk built under the window as my Buddhist altar. It’s impossible for me to be in there and not think of Tom, pencil behind his ear, listening to the Grateful Dead and being in the zone. Often when I walk into the room, I say, “Hello, my love.”

The guest bedroom is the room where the Roomba that my husband occasionally says hello through lives. Sometimes when I say hello, the Roomba lights up, although it has been very quiet lately.

A few days ago I switched one of the nightstands in the room out for a different one. The new one looks much better but it felt like a small betrayal of my husband. He was very particular about decorating and had a much more discerning eye than I do. I justified the switch by reminding myself that the nightstands were a last-minute thrift store purchase on the eve of our first guests arriving and that they held no particular sentimental value. Still, as I was making the switch, I said out loud to him, “Now you may not approve of this, but I’m in charge now.” There were no lights flickering and the Roomba stayed silent, so I can only assume he is onboard with the change.

Actually, I prefer to imagine that he is too busy with a new adventure to care much about what I’m doing with nightstands.

I wonder if I will ever take down the blueprints and put up the coverings. I’m sure the coverings will look beautiful—much better than the blueprints, which I love but I admit they have limitations as décor. If/when I remove the blueprints, I’ll be careful to avoid tearing them and maybe I’ll frame them or put them in my “smells like Tom” drawer.

Sometimes I marvel at how his death makes everything he touched feel precious to me. If he were alive, I would find the blueprints a quirky window covering and that’s all. When we were ready to put up the coverings, I would tear down the blueprints and toss them into the recycling bin without a second thought. I would probably forget that there ever were blueprints covering the glass.

But he isn’t alive and so they are The Blueprints that Tom Put Up. Frame-worthy and guaranteed to make me cry if/when I take them down.

grieving, life skills

Life Is Too Short to Be Busy

My husband was 61 years old when he died. He never got to retire. He didn’t get to see his son get married. He didn’t get to see me become a writer or our trainwreck dog become a responsible canine citizen. He missed out on so much.

Up until he had his stroke when he was 60, I was certain he would outlive me. He was almost 10 years older, but he was fit and vibrant and had an indominable spirit. I think the same could be said about me, but whenever we competed against each other, he won, so I just figured he would win the long life contest.

Given that I had a stroke myself and almost died when I was 27, I’ve been keenly aware of how short life is for a long time, but every time a young(ish) person I know dies suddenly, it knocks the wind out of me. I had the wind knocked out of me this week when a colleague unexpectedly died.

Some people ask, What would you do if you knew you only had a year left to live? I hate this question. None of us know when we’ll die. You may not even get that year. I prefer to keep in mind that each day could be my last and not wait for a grim diagnosis to kick me in the ass.

It’s easy to lose sight of what really matters in the midst of productivity culture, which valorizes answering email quickly or multitasking or hustling all the time. I’ve never heard of someone on their deathbed saying they wish they had gotten to Inbox Zero. No, the things dying people regret are not spending enough quality time with loved ones, holding themselves to others’ expectations rather than their own, and putting too much energy into work.

For me, living each day as if it could be my last means a few things on a daily basis:

  1. Never being too busy to respond to a bid for connection. This means the laundry may not get done or the email may not get answered, but the friend or colleague who wants attention or affection will get it. This doesn’t mean I entertain every interruption—I’m actually very good at shooing people away when they are just bored or looking to vent pointlessly. But when I discern an authentic bid for connection, I drop everything.
  2. Being accountable when I screw up. My late husband and I grew up learning that an apology is a sign of weakness, which means we had some unnecessarily ugly arguments. In my husband’s last year, we both learned to forgive, and it was a gift to both of us. Once we learned how to forgive, we were eager to do it and forgave each other all the time—we began competing to take responsibility for something rather than to blame the other. It was magical and I continue to apologize easily.
  3. Doing nothing regularly. Productivity culture makes us think we need to always be doing something, that being busy is intrinsically a good thing. But this is a myth. I have a wonderful friend who taught me the value of staring into space, preferably from a hammock. What could be more important than luxuriating in the pleasure of simply being alive? For more inspiration, I recommend Jenny Odell’s How to Do Nothing. For something shorter, try my first favorite poem, James Wright’s “Lying in a Hammock at William Duffy’s Farm in Pine Island, Minnesota.”
  4. Seeing time for what it is. People often say that time is money, but I think it makes more sense to realize that time is life. You only get a finite amount of it, and unlike with money, you have no way of knowing what your balance is. You can’t get a loan and there are no refunds.
  5. Seeing money for what it is. I recently read Die with Zero by Bill Perkins, which freed me up to stop worrying about saving every penny for retirement and thinking instead about using my money for experiences and creating memories with loved ones. Instead of planning to leave a large gift to organizations that matter to me when I die, I give them money now.

Email will not keep me from seizing the day!