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.

grieving

When will I feel normal again?

Whenever I meet someone who is newly widowed, they ask when they will feel normal again. I remember asking that question of my new widowed friends, too. We all want to know how long it will take before the crushing pain in our hearts cools lets up a bit. I worried during the first year that I would die from heartbreak and I see other widows posting similar sentiments in the Facebook widow groups I belong it.

This journey is different for each person, but for me, around the three-year mark I started to feel kind of normal. I still felt grief but it was no longer overwhelming. I’m almost 3 ½ years out now and yes, I still miss Tom horribly, but I’m so used to him being gone that missing him is just part of my routine.

In the early months, grief was all-consuming, filtering every of life. Even basic tasks like cooking, getting dressed, and answering email felt impossible, and work held no meaning. Simple objects like Tom’s last glass of grapefruit juice in the fridge or clothes that still carried his scent became precious artifacts. I couldn’t bear to think of moving them, much less getting rid of them. Every day I was pushing through thick brain fog.

Around the six-month mark, there was a pattern of waves—intense periods of mourning followed by calmer stretches where the brain fog lifted slightly. I was able to take some small steps forward, like giving away some of Tom’s clothes and dismantling the makeshift bedroom in the living room and moving back down to our old bedroom. Every “first” without Tom—holidays, birthdays, traveling—brought fresh waves of grief.

Over the course of the second year, those waves continued, but the calm stretches got longer. I’ve heard many people say the second year is harder than the first, because the numbness of the first year has faded but the pain remains. That feels true for me. Those calm stretches got longer, but when the fresh waves of grief hit, they hit hard. During the calm stretches, I began feeling engaged with work again and did some entertaining. During the grief waves, I was completely flattened. I tried to imagine going rafting, for example, and just felt sick at the thought.

During the second year, I worked to develop new routines around my new life as a widow, which meant letting go of routines I loved that were built around my life with Tom. I still miss the old routines. For example, getting him out of bed after his stroke was a complicated procedure, so we learned how to enjoy our coffee together before he got fully out of bed; I helped him sit up and swivel around so his feet were on the floor, then I brought our coffee into the bedroom area of the living room and he drank his coffee while he was sitting on the edge of the bed and I sat at his feet while we discussed the upcoming day.

Letting go of that routine after he died was tough. I kept the bed in the living room for months after he died and sometimes sat on the floor to drink my coffee, in the same spot where I had when he was alive. After I moved back to our bedroom in the basement, I experimented with drinking my coffee in different rooms and during different activities, like reading or puttering around the house. I drank my coffee outside. I tried switching to tea.

At about 2 ½ years out, my morning coffee routine stabilized into one I still observe today. I journal and talk to the dogs while I drink my first cup of coffee. Talking to the dogs kind of takes the place of talking through my day with Tom. It’s a nice way to begin each day, feeling connected to the dogs and myself (through the journaling).

By three years out, grief had become a familiar companion rather than an overwhelming force. The pain hasn’t lessened, but the ability to carry it while living fully has grown stronger. Dreams of Tom have become frequent, offering new ways to feel connected to him. Grief no longer filters every experience, but it’s always there, laying at my feet like a sleeping dog.

I have been told over and over that time heals grief and every time, I call bullshit. Time does not heal the grief. I have worked hard to get where I am, with regular therapy, multiple support groups, and tons of reflection through daily journaling. I’ve had the help of many friends and family members who have been unwavering in their support. I have not “gotten over” Tom’s death by any stretch and I don’t intend to. I love him as much now as I ever did—if anything, my love for him has grown stronger over time. I have reshaped my life around Tom’s absence, missing him, honoring him, and accepting that I won’t see him again in this lifetime.

For me, that’s how “normal” looks, and I like it.

caregiving, death

Love, Food, and Loss at the End of Life

Margaret is dying. She’s almost 90 and has chronic obstructive pulmonary disease (COPD), a condition of the lungs that limits airflow and causes shortness of breath. She’s been on hospice care at home for many months and is ready to die.

Usually when I visit her, she has very little appetite. Her children want her to eat and offer her meals, snacks, and beverages every few minutes while I am there. “Mom, how about some toast?” one asks. Margaret shakes her head slowly. “I’m not hungry,” she says softly.

“Just a bite of toast, Mom? Please?” the daughter urges, putting a plate of toast in front of her.

Margaret takes a bite of toast, looking down at the plate. She gestures slightly with the toast and asks me, “Is this the toast?”  She no longer remembers the names of many things.

“Yes,” I confirm. I deliberately do not encourage her to eat more of the toast.

Later I mention to the children that appetite loss is normal for people approaching death. I’ve told them this before, but I know that watching your mother die is difficult and I don’t know what they remember of our previous conversations. I tell them again as if it’s the first time.

I know firsthand how hard it is to watch a person you love refuse food, especially when shared meals have been important to family life for years. Margaret’s kitchen is stocked with beautiful blue Le Creuset cookware, indicating that food preparation has been taken seriously.

One of the ways I demonstrated my love for my husband Tom was by cooking for him. When we met, I was learning how to cook meat after being a vegetarian for 25 years. As a hard-core carnivore, he was happy to give me assignments: learn ten ways to make chicken, talk to the guy who owns the local meat shop about the best cut of beef for slow cooking, and of course, come up with 7 different recipes involving bacon to celebrate Bacon Week (which doesn’t technically exist, but did in his house, and ran from Christmas to New Year’s).

After his stroke, I knew his recovery was going well when he started asking for very specific foods and dishes: tangerines with crème fraiche, a combination of red and green grapes, chicken pot pie with fresh thyme. He had a sweet tooth after the stroke and loved root beer floats and chocolate eclairs—so I kept root beer and ice cream on hand. I discovered the Whole Foods bakery made chocolate eclairs on Tuesdays and Fridays and I got them delivered. He took joy in eating, thanking me for whatever I gave him and often bragging to his medical team about how well I fed him.

About a month before he died, his appetite began to wane. He no longer got excited about his morning coffee and sometimes wanted to go to bed without dinner. I made his favorite dishes—macaroni and cheese, fried chicken, chilaquiles. I made a side of bacon to go with whatever I cooked. Sometimes he didn’t care. He took a few bites of a chocolate éclair and lost interest. Even juicy fresh fruit lacked appeal for him.

I was crushed. For twelve years, he had loved my cooking and I had loved cooking for him. Cooking for him was one of the ways I made him feel special—not just serving his favorite foods, but setting the table nicely, using cloth napkins every night, sometimes lighting candles. I showed my love for him in a hundred little ways, but cooking for him was one of my favorites.

I now realize that there were signs he was dying well before he died. Like Margaret, he lost his appetite and all interest in food. He wanted to nap even more than usual. At the time, I thought he was just anxious about his upcoming surgery, but now I think he was turning away from this life and preparing for his next adventure.

Just like Margaret’s children, I kept offering food. I thought if I just came up with the right food to offer, he would eat. When he turned down a root beer float, I offered cherry pie. When he showed no interest in fried chicken, I suggested nachos. But none of it interested him.

I wish I had respected his wish to not eat and asked him instead, “What do you want?” If I had let go of my focus on food, he might have asked me to hold his hand or shared a memory with me.  

This is the question I bring to Margaret: “What do you want?”

She doesn’t want much—mostly to nap. But sometimes she wants to talk about what death will be like or whether she’ll be reunited with her dead siblings. Often she wants to sit together in silence.

At the end of life, those activities may hold more meaning than eating.

Accessibility + Dis/ability

You Are Not the Only Disabled Person at Work

In work meetings, in the classroom when I’m teaching, at social events, and at conference sessions, I often wonder if I’m the only disabled person in the room. Because disability is so often not apparent and it is seldom spoken about, even when I know there must be other disabled people in the room, I feel isolated and self-conscious about my differences. I feel unspoken pressure to mask my low vision.

That feeling of being alone is powerful. It has swayed me at times to not advocate for myself, convincing me that asking for fairly simple things like more lights on in the room or larger print on slides is disturbing the peace. I have felt shame that I alone want brighter light or larger print. And then often, after the event where I felt such shame, I have learned that others also thought it was too dark or the print on the slides was too small, but we all felt enough shame that we sat quietly in the dark, unable to read the slides.

Ableism and other forms of oppression thrive when the people being oppressed think they are alone. The more alone we feel in our oppression, the less likely we are to ask for help or accommodations.

I want to note that this feeling of being alone is not anyone’s fault. The isolation is a function of systemic ableism rather than of individuals trying to oppress me. Most of the time these days, when I do ask for changes in lighting, people are happy to make them. Most colleagues and presenters keep their grumbling to a minimum when I ask that they make their slides high contrast or use larger fonts.

But the good intentions of people do not make spaces, meetings, and presentations more accessible. The onus is often on the disabled person to educate others around them and ask for accessibility measures. Annika Konrad calls the resulting exhaustion access fatigue.

At last year’s International Writing Center Association conference, I attended the Disability Special Interest Group meeting. I looked around and saw people I had known for years who I never knew were disabled. Others I knew as disabled but hadn’t ever talked to them about disability. Simply being in a room full of other disabled people reduced my anxiety fatigue right there on the spot.

The following semester, I taught a class on disability rhetorics. The majority of students who took the class identified themselves as disabled to their classmates. Students commented many times throughout the semester on how profound it was to have a community of disabled peers. They said that for the first time in their lives, they didn’t feel shame and isolation. They didn’t worry about being the only person in the space with so-called “special needs.”

Seeing the impact of disabled community at the IWCA meeting and in that class motivated me to create a disabled employee affinity group on campus. An affinity group provides a safe space for disabled people to connect, share experiences, and support each other. Simply knowing you’re not the only one is empowering. Although I know logically that I’m probably seldom the only disabled person in the room, being part of a workplace affinity group helps remind me that when I ask for accommodations, I am helping other disabled people, too. I’m not the only one who benefits from brighter lights or larger fonts on slides. Instead of feeling selfish for requesting accommodations, I can understand what I’m doing as advocating for accessibility and inclusivity.

An affinity group makes disability in the workplace visible, both for current and prospective employees. The existence of the group is proof that disabled people work there. It tells disabled people considering applying for positions that they will have a community there. It provides a way for members to support each other, share experiences, and help others navigate the mysterious process of asking for official accommodations.

One aspect of workplace accommodations that is shrouded in mystery is what can you ask for? Many folks don’t know what kind of accommodations you can ask for besides ramps and sign language interpreters. An affinity group provides a space for members to talk about what their accommodations are and how they got them—or how inadequate their accommodations are and how to get more impactful ones.

In a culture that prizes independence, disabled community provides interdependence without shame.

Aging, caregiving

Use Silence for More Authentic + Vulnerable Conversations

I visited a hospice patient last week who is slowly detaching from this life. I know from my end-of-life doula training that this is normal. As they get closer to death, people often turn inward, eating less, talking less, seeming less engaged with the world outside themselves. I see this happening with Margaret.

When I arrived at her apartment, she was sitting at the table, staring down a plate of scrambled eggs. Her head hung. There was a fork in one hand, but that hand rested on the table and the fork dangled a bit precariously.

“Mom doesn’t want to eat,” Margaret’s daughter told me. I have assured the daughter on previous visits that it’s normal for people to lose their appetites and that if Margaret doesn’t want to eat, it’s ok. But the daughter would really like her mother to eat.

I asked Margaret if she was hungry.

“No,” she said quietly, not making eye contact. “I’m having . . . a bad day,” she said slowly, still not making eye contact.

“Do you want to talk about it?” I asked.

“No,” she said. Despite having said she wasn’t hungry, she started tentatively eating the eggs. While she ate, we sat in silence. Each bite seemed to take her full concentration and I didn’t want to break it. When she finished eating, I helped her to her recliner, where she dozed. My entire visit passed in near silence. It was peaceful and when I left, Margaret’s daughter commented that her mother was less agitated than she had been earlier.

I’ve always loved silence, but for most of my life, I tried to avoid it unless I was alone. Unless the person next to me was a stranger or we were watching a movie, I felt compelled to fill the silence with conversation. Unless I was alone, silence felt awkward to me. I think many of us are socialized this way.

At work, I’ve championed silence. In the writing center I direct, I teach tutors to allow silence in their sessions to give their clients time and space to reflect. I set a timer for ten seconds and we sit silently for the full ten seconds. It’s hard. We are not used to ten full seconds of silence.  

When I teach, I allow at least ten full seconds of silence to pass after I ask a question. My students sometimes comment on how uncomfortable the silences in my classes are. But more often, students thank me for providing the silences, saying those moments are productive for them.

Since my husband’s stroke, I’ve been allowing more silence into my conversations. My husband needed the processing time, and I’m finding that it’s not just folks who’ve had strokes who benefit from that time.

Being with someone in silence is a great way to hold space. Filling the silence with insignificant chatter does not invite authenticity or vulnerability.

If you’re not used to being silent with someone else, it may take practice before it feels configurable to you. That’s ok. I’ve been practicing for years and still succumb to the pressure to fill the silence sometimes.

If you want to get more comfortable with silence, here are some strategies to try:

  1. Practice counting seconds in your head after someone speaks and before you speak. Notice how many seconds (if any) typically pass in silence between you and the other person. Aim to extend it by one second. It may take many days or weeks of practicing this before you’re ready to extend it by another second, but that will eventually happen. Then add another second. You will notice your conversations stretching out, like a cat settling into a sunny spot. You will feel calmer. You will be listening better, thinking less about what you’ll say next.
  2. When the silence begins, take a deep breath. Use the breath to buy yourself a few seconds, but also to ground yourself in the present moment. I do this when I’m teaching. After I ask a question of the class, I take a deep breath and let it out slowly. Then I start counting in my head to ten. I don’t allow myself to speak until I’ve gotten to ten.
  3. Remember that silence is communication. It communicates patience, leisureliness, respect, attentiveness. It can de-escalate tension. In fact, silence has been key in helping me cope with tension and conflict without getting defensive. Recently, when I’ve been in situations that could escalate into an argument, I’ve taken a deep breath and made myself count to ten before responding. Interestingly, my responses in these situations tend to take the form of questions rather than defensive statements. I ask for more information instead of telling the other person they are wrong.

Others may not like the silence and that’s ok. They may not be used to it. They may be like the students in my classes who complain that the silence is awkward. Perhaps it is. But for me, allowing space for authenticity and vulnerability is more important than avoiding awkwardness.

Accessibility + Dis/ability

Shorter Days Bring Disability Worries

Colorado, where I live, officially has four seasons, but for me, there are two seasons: light and dark. My low vision is a complicating factor all the time, but when there’s more darkness in a day than light, I am in a constant state of anxiety.

Around this time of year, when the days start getting noticeably shorter, I shift from appreciating the crisp autumn air and beautiful fall colors to dreading the dangers that come with more darkness for me.

Darkness is coming. Like a character in a fantasy drama series, I have that thought with a shudder when the leaves start turning.

I start making mental notes during the day about the uneven sidewalks on my block and the construction zone near my usual bus stop so I can avoid them in the dark. I try to remember where the tree branches hanging low enough to hit me on my walks with the dogs are, knowing I won’t see them when I walk the dogs at night.

When the days are long, I love walking the dogs and look forward to our jaunts. But from now until the time change in March, at least one of their walks will take place in the dark and I will breathe a sigh of relief when I make it safely back home. My late husband gave me a headlamp to wear when I walk them in the dark, which helps, but not enough to make me feel confident of where I’m stepping. Also, because I am sensitive to bright light, sometimes the illumination of the flashlight hurts my eyes.

Every year when we change our clocks in March, I breathe a sigh of relief. I survived another dark season. I prefer the weather of the dark season but the dark itself sucks so much energy from me. The fear of not knowing what I can’t see weighs on me a little more heavily each year.

Mental health conditions, like Seasonal Affective Disorder and depression, can become more intense when light is limited. I know a lot of people who say their depression and anxiety get worse around the winter holidays, with the pressure of mandatory cheeriness and expectations of increased socializing. If you’re grieving, the holiday season may make you miss your loved one more intensely.

And it’s not just the increased stretches of darkness that make the dark season challenging for people. The cold temperatures that typically come with darker seasons can trigger symptoms of many neurological conditions, as well as asthma, multiple sclerosis, and arthritis.

The dark season was more treacherous for my husband after his stroke, too. Pushing a wheelchair through snow or over ice is tough. One time my mother-in-law had to push me while I pushed his wheelchair up an icy ramp—otherwise the wheelchair and I would start sliding back down. Slush would clog up the wheelchair’s wheels. Melting snow created frigid puddles that we couldn’t navigate around.

As we head into another dark season, I hope you’ll give yourself and others grace. There’s a lot to love about the dark season; I’m a devoted fan of hot chocolate, snuggling under a thick blanket, holiday music and festivals, and the glittery look of fresh snow. But for many of us, the dark season comes with an extra dose of struggle.

Accessibility + Dis/ability, caregiving

How to Support Someone Looking for a Diagnosis

Last week I wrote about why getting a diagnosis can be so difficult: it can be expensive in terms of both money and time, and patients and doctors don’t speak the same language. On top of that, there’s a social cost: someone who is trying to get a diagnosis is often dismissed by friends and coworkers as a hypochondriac or faker.

If someone you know is trying to get a diagnosis and they’ve had to go to more than one appointment or have more than the usual blood and urine tests, they are likely frustrated. They may be stressed out about how much money, time, and energy they are putting into the process. They may also feel lonely. Looking for a diagnosis can alienate someone from people they used to be close to.

When I was having what turned out to be brain bleeds before my arterio-venous malformation (AVM) was diagnosed, I was lucky to be surrounded by people who supported me. My boss and co-workers didn’t question whether I was really experiencing the brutal headaches I described, even though they didn’t see me when I was having a headache. My then-husband encouraged me to keep seeing doctors, even when we didn’t have insurance and it felt like we couldn’t afford it.

No one was questioning me besides the doctors I was seeing, but I still often felt alone. I had seen and heard lots of questioning of other people about their symptoms. For example, my grandmother had many medical issues and her husband and son regularly questioned “how real” her symptoms were since doctors weren’t diagnosing anything. They groaned audibly whenever she mentioned a stomachache or headache. When guests came over, her husband would say, “Please don’t ask her how she feels!” with a roll of his eyes.

Growing up with this allowed me to internalize the message that doctors know our bodies better than we do. Whenever one of the headaches or smell reactions came about, I had an argument in my head: one voice asking me, “Are you sure this is happening?” and another one saying, “Yes!” But no matter how emphatic the “Yes!” was in my head, there was always that second voice, gaslighting me, making me wonder, was I just weak? Did everyone have headaches like this but I was the only one complaining because I was pathetic?

Chances are, your friend looking for a diagnosis feels some shame about their search. You can help alleviate some of their feelings of being alone. Try this:  

  1. Believe them. Even if you have had very different experiences with pain, memory, mobility, organ function, or whatever, understand that your experiences are not universal. It’s fine to ask questions for better understanding, such as, “Have you noticed any triggers for the issue?,” but don’t question whether your friend’s experience is real. It’s very likely that your friend’s concerns are being minimized or even dismissed by healthcare providers. Your job as a friend is to validate their experience and support them in the difficult process of getting a diagnosis.
  2. If you’re able to, offer to accompany them to appointments. Having someone else there to listen and simply silently support can be helpful. When I was trying to get my vision issues diagnosed, my husband came with me to an appointment; being able to talk with him afterwards about what the doctor said helped me clarify my next steps. If you live far away, your friend might be able to have you “Zoom” into the appointment.
  3. If you’re not able to accompany them to appointments, you might offer to run errands for them, pick the kids up from soccer practice, or do something else to offset all the time and energy they are putting into healthcare appointments.
  4. Ask what would be helpful. If you’re not sure what they need, you can ask. “How can I help?” is a great question and much better than “Let me know if I can do anything,” which is very close to useless. You can also ask questions like, “Do you want to be distracted or do you want to talk about this?” Don’t assume you know what’s best.
  5. Aim to support, not solve their problem. Hold space without suggesting what you would do (unless they ask you).
Accessibility + Dis/ability, Aging

Why Getting a Diagnosis Can Be So #^&! Hard

In my mid-20s, I started having sudden blinding headaches sometimes accompanied by vomiting, confusion, and slurred speech. I also had weirdly intense reactions to familiar smells. I didn’t know if the smell reactions were related to the headaches and I couldn’t figure out what was triggering the headaches. I didn’t have health insurance and couldn’t afford to miss work, so I just hoped really hard that the headaches wouldn’t hit while I was at work.

The one time a headache hit at work, I was alone, closing up the restaurant I worked in. I lurched around, doing my best to complete the end-of-day tasks and then stumbled to the bus stop, where I vomited before boarding my bus. When I got home, I called my boss to tell her I hadn’t been able to close up properly because of a health scare. She was sympathetic, and having been diagnosed herself with a rare disorder, she encouraged me to see a doctor and pay out of pocket.

By the time I saw the doctor a few days later, I wasn’t having a headache and I appeared fine. He seized on the date of my last period. PMS, he said.

“What about the smells?” I asked.

“Probably unrelated,” he said with confidence. I felt stupid for having mentioned them.

“This isn’t like any PMS I’ve ever had before,” I argued weakly.

“PMS doesn’t show up the same way every time,” he said. “We could do a spinal tap, but it probably wouldn’t show anything. And it would be expensive and painful.”

I went home to my husband, embarrassed that I had spent money we didn’t have to learn I had PMS.

Six months later, I had health insurance. The headaches and smell sensitivity continued. I mentioned the symptoms to my new PCP, but he wasn’t impressed. Was there a reason I didn’t trust the diagnosis of the first doctor? he wanted to know.

“I looked up my symptoms in a book I have,” I explained. I had bought the huge paperback compendium of medical symptoms a few years earlier but tried to not take it seriously when it suggested I could have a brain tumor. “It’s probably not a brain tumor, but . . . “ I suggested, avoiding eye contact.

“Those books are dangerous,” my PCP snapped. “Everyone comes in here thinking they’re an expert.”

“I know I’m not an expert,” I acknowledged. “But the headaches don’t seem to be connected to my cycle. And they’re so sudden and severe.”

We were at a standstill. I had given the best argument I could come up with and he was unmoved. “Come back if you have another headache,” he said with a shrug.

On January 26, 1997, I had another headache. I was at home with my husband and sister. When I began slurring my words as I argued with them that I was fine, they called 9-1-1. By the time the ambulance arrived, I couldn’t control my arms or legs.

It wasn’t PMS. For two years, I’d been experiencing brain bleeds caused by an arterio-venous malformation (AVM). When it went untreated, the bleeding escalated until I experienced a catastrophic brain hemorrhage or hemorrhagic stroke. The AVM was adjacent to the olfactory cortex, which is why I was having intense reactions to smells.

I spent five days in a medically-induced coma and another two weeks recovering in the hospital and at home. My doctors in the hospital told me that young people who have hemorrhagic strokes typically die immediately or recover quickly. I did both, having a near-death experience in which I left my body and then recuperating enough that I returned to work two weeks later.

My story is a great example of how difficult it can be to get a diagnosis and why I am frustrated that our culture puts so much value on diagnosis. People with conditions that haven’t been diagnosed are considered hypochondriacs, fakers, or snowflakes. People searching for a diagnosis through multiple doctors are called doctor shoppers. But as my story shows, getting a diagnosis can be complicated by many factors:  

  • It can be expensive. Not having insurance kept me from going to a doctor sooner and kept me from finding another doctor when I didn’t like the way the first one treated me, but even if I’d had insurance, co-pays can add up, and insurance doesn’t cover everything. I have a friend who has insurance who was recently diagnosed with autism; their insurance doesn’t cover autism evaluations, so my friend had to pay out of pocket.
  • It takes time. The appointments themselves take time; my recently-diagnosed friend, for example, had to take a full day off work for the autism evaluation in addition to having multiple one- and two-hour sessions with the evaluator. Sometimes simply locating the right doctor to see takes a long time, or symptoms may show up sporadically and seeing a doctor when the symptoms aren’t present makes it harder to describe them.
  • Doctors don’t typically have time for or interest in the kinds of in-depth conversations that many diagnoses require. The two doctors I’ve had experience with who entertained in-depth conversations typically ran two hours or more behind schedule, which makes appointments with them harder to book and take more time.
  • Patients don’t describe what they are experiencing in language doctors are trained to expect. The ludicrous “pain scale,” for example, assumes everyone experiences pain the same way. When I was trying to get my daughter diagnosed with asthma and I said she was wheezing, the doctor said “wheezing isn’t what people think.” Later, after my daughter was diagnosed with asthma, the doctor admitted that my daughter wheezed and said that my use of the proper term was unexpected enough to throw her off. WTF? Using the wrong term is a problem and apparently using the right term is also a problem.  
  • Medicine is an evolving field. Doctors don’t know everything and there are many aspects of our health that are misunderstood or barely understood. For a thought-provoking discussion of where medicine might be headed, I recommend Peter Attia’s book, Outlive.
  • Patients are socialized to not disagree with doctors. I’m an assertive, strong-willed person, and I often feel internal pressure to not push back against what doctors are telling me, even when I know they are wrong.
  • Oppression is systemic. Women, people of color, and people with disabilities are already disadvantaged, but then factor in that most medical research assumes a male, white, non-disabled patient and accepted lists of symptoms and treatments may be wildly inaccurate.

Next week, I’ll talk about how you can support a friend who is trying to get a diagnosis.

Buddhist life, death

How to Use Beginner’s Mind to Talk about End-of-Life

My end-of-life doula training emphasized from the beginning the importance of bringing curiosity and an open mind to conversations about end-of-life. Even when we think we know how someone feels or what they want, we need to allow room for them to surprise us.

Adopting beginner’s mind is a great way to do this. Engaging your beginner’s mind means letting go of preconceived notions and approaching something with curiosity and openness. When done intentionally, it can allow us to see something familiar in a new way, the way a beginner does.

A recent visit with Shawn, a friend in his 80s with some early dementia, gave me a great opportunity to practice beginner’s mind. I was pretty sure I knew what he wanted in terms of burial. He’s made offhand comments about hating the idea of being buried and preferring cremation. But I decided to be extra curious as we discussed his wishes.

I was surprised when he brought up water cremation and expressed how much he would like his body to be used as compost for a tree.

When I thought about it later, I realized I shouldn’t have been too surprised. He has always been drawn to the outdoors. When I helped him go through old photos, there were more of flowers and nature than of people. I’d ask him about the people in a photo and he’d say, “I don’t recognize them. But that’s a moonflower on a trellis I built of cedar around 1998.” One photo of his wife and then six close-ups of the peonies in a planter at her feet, capturing different angles.

Still, I was surprised that he even knew about water cremation, let alone that he was interested in it. I just learned about water cremation myself a few years ago; if I hadn’t been intentionally engaging my beginner’s mind, I might have let my own arrogance about being more up-to-date about burial practices and my assumptions about people older than me being traditionalists convince me he would want conventional cremation.

In fact, I was so sure that I already knew what he wanted, that I hadn’t even meant to talk with him about burial, but when our conversation went there, I let it. And I’m glad I did! Now I know what Shawn wants and I can help him and his family learn more about water cremation.

If you want to practice beginner’s mind, here are a few of the strategies I used in my conversation with Shawn:

  1. Listening without thinking about my response. This can be tough! I had to remind myself a few times while Shawn was talking to let the responses forming in my brain go. When I felt the urge to interrupt to challenge something he said or point out how it contradicted something else he’d said, I took a deep breath and imagined the words forming in my head leaving with my exhale.
  2. Allowing pauses in the conversation. Another tough one. I fall into the trap of judging the quality of a discussion by how little silence there is. But when I’m really listening to the other person, I need a few seconds after they stop talking to formulate my response, which means there will be silence. I sometimes say, “Give me a moment to organize my thoughts” to acknowledge that pause—to myself as much as to the other person.
  3. Asking questions that elicit more information. “Tell me more about that” is one of my favorites right now. Shawn loves to talk about himself, so when I say “tell me more,” he does! It’s not always on topic, but that’s ok. Whatever he says helps me learn more about him and that’s my real purpose.
  4. Letting go of efficiency. Beginner’s mind means taking the scenic route. It may take multiple conversations or some meandering to get to any meaningful answer to a question. It took me an hour to learn that Shawn was interested in water cremation. Beginner’s mind cannot be rushed.
anxiety, Buddhist life

Dealing with Post-Break Overwhelm + Anxiety

I had friends in town for a few days last week. I worked while they were staying with me but let most everything else slide. Within moments of them leaving, I was overwhelmed with all I had to catch up on. My mind seemed to instantly fill with tasks that felt urgent: vacuum up all the dust bunnies, clean out the fridge, pull the weeds in the sidewalk cracks, read all the texts that came in, reassemble the pull out couch, figure out what the packages are that arrived (WTF did I order?).

Every time I tried to turn my brain off, it just generated more items for my to-do list. I hadn’t done laundry in days or checked my personal email. I needed groceries. A lightbulb needed replacing.

And then my anxiety kicked in. My brain said, “I think I noticed a bit of mold on a lemon in the fridge last night. What if it touches the lettuce and the lettuce gets all moldy? And then what if the mold spreads beyond the lettuce?” Then my mind jumped to the washing machine—it made a scraping sound—what if it’s spinning too fast and catches on fire?

Just like that, the feeling of being behind morphed into fear of a deadly mold infestation and a fire.

In these moments, I know I need to calm down but telling myself to calm down just makes things worse. When I’m upset, if someone tells me to calm down, it has the opposite effect. When I tell myself to calm down, the same thing happens. I want to scream, “How can I calm down when the house is a disaster and about to explode into mold and flames?!”

Decision paralysis takes over. I can’t identify what to do first. Planning a trip to Africa for some future point seems equally important as having to pee right now. It all must get done now!

At some point, I finally remember what works: I tell myself, “Take a deep breath.” Zen Buddhism brings everything back to the breath. All we have is this breath, and then this one, and then this one. The breath is all that really matters. Focusing on my breath calms me. Each deep breath slows my brain down a bit. Sometimes it takes just one breath and sometimes it takes a hundred, but when I let my breath become my focus, all the mental clutter fades away.

I have a tendency to hold my breath when I’m exerting myself, whether mentally, emotionally, or physically. My personal trainer is always cueing me to breathe, reminding me that when I hold my breath, lunges and squats are harder. It’s true for everything: holding my breath makes thinking harder, sleeping harder, conflict harder.

The simple act of breathing with awareness reminds me that none of those things I think need to get done actually need to get done. Life will go on, whether the laundry is done or the email is answered. I can make choices about where to focus my energy.

I remind myself that I will never be caught up. The expected outcome is that I will die with things undone. My husband died with things undone. My mother died with things undone. It’s ok.

Life is not about getting things done. When I remember my husband or my mother, my mind goes to my love for them, the moments we shared, not the things they left undone.

Caregiver turned widow. Rhetoric + writing professor. Edupunk. Feminist. Buddhist. Optimist.