Tag Archives: disability

Accessibility + Dis/ability

I Don’t Recognize Myself in Photos (Life with Face Blindness)

About 10 years ago, a friend mentioned meeting someone at a conference who couldn’t see people’s faces. This person couldn’t tell TV characters apart, didn’t recognize herself in photos, and walked past her loved ones in public without realizing it. My friend said this person’s condition was called “face blindness.”

First chance I got, I googled face blindness, officially known as prosopagnosia. Little is known about the condition, although there is a research center affiliated with Harvard University. The more I learned, the more I was certain that I had it, too.

I’ve had it my whole life, but didn’t know that the way I saw faces was different from how others do. Actually, for me, face blindness doesn’t keep me from seeing faces exactly, but it does keep me from understanding them as a whole and from remembering them. That probably makes no sense if you don’t have face blindness, so I’ll explain it another way.

I can see a nose, a mouth, eyes, and a jawline, but when I look at a face, those components don’t stay steady for me. I may see a jawline but not be able to make sense of the nose. I may see the eyes but they seem to move around the face. To me, faces look very much like faces in Picasso’s paintings do. I didn’t understand why Picasso’s work was considered that interesting until I realized that I don’t see faces the way most people do. (In fact, there’s a theory that Picasso had face blindness.)

As far as being able to remember faces goes, I can see a face in front of me just fine and recognize it as a beautiful face or an interesting face but when I turn away, I have no memory at all of the face. When I turn back, it’s as if I’m seeing the face for the first time. I memorize aspects of people’s faces so it can appear that I remember faces, but it’s really that I’ve memorized that one friend has a heart-shaped face and another has full lips that form a perfect V shape at the middle of the upper lip. I might remember that someone wears distinctive glasses or has a nose piercing or has dramatic eyelashes.

I recognize people by their gait, voice, glasses, posture, clothing, or hair rather than by their face. I know I love my daughter’s face and find it beautiful, but I can’t describe it to you. When I used to pick her up after school, I saw kids streaming out of the school building, knowing one of them was mine but unable to say which one. I recognized my husband by his shoulders and the fact that he often wore Carhartts.

I’ve always had trouble recognizing people when they are wearing a hat, in a different context, or they’ve changed their hair. I’ve developed a lot of habits to offset these challenges. When I’m meeting someone at a restaurant or coffee shop, I try to arrive first and be seated so they’ll have to find me. I’ve had too many embarrassing incidents in which I walked right past the person I was meeting and got my own table near them.

My whole life, I’ve been accused of ignoring people in public. Many times in high school, a friend would claim I had looked right at them in a public setting, like the mall or library, and ignored them. I always said I hadn’t seen them, which was true—but it was weird to me that this was such a common accusation. I hated the cafeterias in high school and college because I’d get my tray of food and then look out into a sea of strange faces.

My inability to recognize faces leads to social awkwardness on a regular basis. When someone who had been my neighbor for ten years started working at my university and I introduced myself to her as if we had never met. Another time, a male colleague changed his facial hair and I introduced myself to him and welcomed him to the department. Once I hugged a man in the grocery store wearing Carhartts and nearly kissed his arm before he told me he was pretty sure I was confused. A guy I went on a date with was upset to learn his handsomeness might be lost on me.

Now that I have a name and a way to explain my condition, I’m much less embarrassed about my regular social blunders. I tell people regularly that I have face blindness. I mention it in my email signature and on the first day of classes. Many people I interact with on campus are in the habit now of saying, “Elizabeth, hi. It’s Susan from Admissions,” to let me know who they are. I’ve gotten much more confident when someone says hello to me in public about saying, “Hi! Who is it?”

A couple years ago, someone asked me if I had read Heather Sellers’s memoir of life with face blindness, You Don’t Look Like Anyone I Know. Although I hadn’t, I immediately recognized Heather Sellers as the person my friend had met at that conference all those years ago. I immediately bought the book and read it in record time. Sellers’s experience resonated with my own in such uncanny ways—she, too, was regularly accused of having looked right at someone and ignored them. She didn’t recognize herself in photos.

If you think you might have it, you can take this test to find out. Although there’s no treatment or cure, knowing you have it can help you understand your own experience better and, if you want to register with the Prosopagnosia research center, you can help researchers get a better handle on how many people actually have it.

P.S. Face blindness has nothing to do with my low vision. It’s a brain issue, not a vision issue.

Accessibility + Dis/ability, anxiety, grieving, mental illness

How to Be Gentle with Yourself

Twice in the last week I’ve told someone I hope they can be gentle* with themselves. They are both dealing with tough situations beyond their control—one’s mother is slowly dying and they are experiencing the heartbreak of anticipatory grief; the other has significant health challenges and just had a second bout with COVID.

It’s easy for me to identify situations where others should be gentle with themselves. It’s a bit more challenging to figure out when I need to be gentle with myself, but it’s something I’ve been working on and getting better at.

I’ve been struggling with a round of depression and anxiety for about a month now, sleeping much more than usual, feeling constantly fatigued and drained. There are days where I get nothing done beyond walking and feeding the dogs and myself and working out (I learned long ago that working out is a basic daily need for me and I almost never skip it, although I do sometimes allow myself to work out for just a few minutes—see #1 below).

For the first week that I felt crappy, I told myself I was wasting my life. I told myself I couldn’t have dessert or a glass of wine with dinner unless I accomplished certain items on my to do list. I told a friend I was being a loser. I asked myself repeatedly, “What the fuck is wrong with you?!” I rolled my eyes at myself in the mirror with the derisive, dismissive, contemptuous air of a teenager.

None of this made my depression and anxiety easier to cope with. It did not motivate me to stop sleeping so much or to fly into action, completing tasks on my to do list. It just made a difficult situation worse.

I wish I could tell you that when I stopped being mean to myself, my depression and anxiety magically disappeared. Alas, that is not the case. But when I stopped being mean to myself, I was dealing only with depression and anxiety rather than depression and anxiety and the cruel torment of a bully. Taking away the bullying made the depression and anxiety relatively easier to bare.

Want to be gentler to yourself? Here’s what I do:

  1. Don’t let perfection be the enemy of good. Working out for 5 minutes is better than not working out at all. I’ve been chipping away at writing projects in 15-minute increments, and while I’d like to be putting in more time, I’m not able to right now.

2. When I catch myself saying something to myself that I would never say to another person, like, “What the fuck is wrong with you?!” I take a step back and apologize. I remind myself that I am a kind person and that I am kind to everyone. Even myself.

3. Refrain from bad-mouthing myself to others. My form of self-deprecating humor can get a little out of hand sometimes and I’m trying to reign it in. When I am about to tell a friend I’m a lazy ass, I remind myself I am depressed.

4. Continue allowing myself dessert, wine, and other treats rather than making them contingent of achievements. Everyone deserves pleasure in their life.

5. Remind myself that depression and anxiety are illnesses, and just as I would cut myself slack about sleeping a lot if I had the flu, allow myself to act like a sick person.

6. Accept what is possible under the current conditions. Although I’ve gotten by with 7.5-8 hours of sleep a night for many years, lately I seem to want more like 10 hours of sleep. It’s very inconvenient. I can’t possibly get done what I normally get done with two hours a day less to do things. This is where guideline #1 really comes in handy. And it turns out that a lot of things I normally do in a day don’t need to happen or don’t need to happen every day. What does need to happen every day is me taking care of myself.

7. Hold space for myself to be depressed or anxious. That means no fixing.

Being depressed and anxious still sucks, but at least now I know I have my own back. I don’t look in the mirror with self-loathing—instead, I look with compassion, as I would for anyone else on the planet.

*I no longer tell people to be strong. I think being gentle is both more difficult and more effective.

caregiving, grieving

Another Caregiving Stint Brings on Grief Again

After a loss, each new experience hits differently. It hits in the context of the loss. Nothing I experience will ever again be uncolored by the stroke and death of my husband.

My daughter recently had surgery to fix an abnormality in her hip. The surgery involved her being put under general anesthesia. After the surgery, the surgeon came out to say everything went well, but I still had a tight feeling in my chest. My husband’s surgeon had told me what a great success his surgery was—but he never regained consciousness and died two days later. I couldn’t draw in a deep breath until I saw my daughter a few hours later and she was conscious and talking.

Before my husband died, I knew there were risks to any surgery. I knew people occasionally didn’t wake up afterwards. I signed all the consent forms when my husband went in, knowing something could go wrong. But it wasn’t until he didn’t wake up that I really understood. I’m not implying that anyone tricked me or that I made a mistake. I would still sign the forms today. But now that I’ve experienced my husband not waking up after surgery, I will never again blithely assume that a surgeon’s report that things went well means anything.

After her surgery, my daughter stayed with me for a couple weeks and I got to take care of her. She didn’t need the level of care my husband did, but she did need help getting in and out of bed, showering, and getting dressed. Each of these activities filled me with memories of caring for my husband.

Sometimes when I remember taking care of my husband before he died, I think I must be idealizing the situation. Surely I couldn’t have loved it as much as I think I did. Who would love being woken up in the middle of the night to help someone use the bathroom? Who would love doing countless loads of laundry because of uncontained body fluids? Who would love having their own activities interrupted constantly by someone else’s needs? But taking care of my daughter made me realize yes, I really do love caregiving.

I consider caregiving an honor. When somebody allows me to see them in such a vulnerable state, I am humbled. My husband prized his independence, as does my daughter. For them to not just consent to me caring for them but to accept it with grace allows me to perform caregiving tasks with grace. Grace begets grace. I try to make it as easy as possible for the care-recipient to accept with grace. I like who I am when I am caregiving—I am patient, accepting, and present in the moment. It’s like Zen meditation for me. I remember feeling that way when my daughter was a baby and needed diaper changes.

Caring for my daughter after her surgery was significantly different from caring for my husband, though, and those differences triggered a lot of sadness in me. My husband had his stroke during the pandemic, so we were much more isolated during my caregiving of him. My daughter had a steady stream of visitors, both in the hospital and once she was at my house, and it was also possible for her dad and friends to help with some of the caregiving. For example, several times when she stayed up later than me to chat with visitors, the visitors were able to help her get ready for bed so that I could keep sleeping. That simply wasn’t possible with my husband.

I also knew my daughter would be able to move back to her apartment after a few weeks, so I could enjoy the caregiving, knowing it had an endpoint that would signify progress in her recovery. That wasn’t the case with my husband. His stroke was massive, destroying 2/3 of the right hemisphere of his brain. He was always going to need significant care and sometimes the specter of caregiving forever weighed on me.

Several times while taking care of my daughter, I was overcome by waves of sadness that I wasn’t always able to give my husband the same level of patience and good cheer I gave my daughter. My therapist reminds me that I did the best I could at the time for my husband. I know I did. I also wish I could have done more, been more, known more. The pandemic complicated everything, as did financial pressures, the extreme complexity of my husband’s case, the nightmare of navigating health insurance, and his depression and anxiety.

Within those constraints, I did well. This fresh grief over not being the perfect caregiver isn’t really about my caregiving. It’s about not having more moments to show him my love.

caregiving, life skills

Caregiving as Couples Therapy

I was my late husband’s caregiver for 53 ½ weeks after he had a massive stroke. He was paralyzed on the left side and had a condition called left neglect in which his brain didn’t process anything that happened to the left of his midline. The left neglect impacted his vision, hearing, and attention, so he often didn’t process sounds that originated to his left, even though his hearing was fine. If a person he was talking to moved to his left, it seemed to him that the person had simply disappeared.

I had to help him with everything from dressing and walking to toileting. I had to manage his medications, remind of things his injured brain couldn’t retain, and do all the cooking, cleaning, and laundry. (I admit I let much of the cleaning slide.) It was a lot of work, but I miss those days tremendously.  

Caregiving gave us the opportunity to get to know each other in new ways. His stroke and my becoming his caregiver were unexpected and not something we would have wished for, but we both agreed that our relationship changed for the better because of it.

We got a glimpse of this the year before his stroke, when my vision worsened to the point where I could no longer drive. I took the bus to work, but my husband began driving me to the grocery store for my weekly trip there. The plan was for him to wait in his van while I shopped, but when we got there the first time, he said, “I better come with you to make sure you’re doing it right.”

We ended up having fun—he asked questions about why I bought the brands I bought (I usually have strong opinions about food), he tried to sneak all sorts of things I would never buy into the cart (the very worst flavors of Pringles, for example), and he made it look like there were stairs to a secret basement in the produce section. His antics that day got him tailed around the store by the security guard.

We laughed so much that we did all the grocery shopping together after that, but typically without catching the security guard’s attention. Neither of us wanted me to lose the ability to drive, but the shift in our relationship meant a little more time together. A tedious chore became a time to enjoy each other’s company.

That realization helped us understand that when I became his caregiver, we would need to continue enjoying each other’s company. A caregiver and care-recipient have to spend a lot of time together and if it’s not pleasant time, caregiving becomes a chore and care-receiving becomes an indignity. Both caregiver and care-recipient have to work at the relationship to make it a partnership.

One thing we did that made caregiving feel like a partnership was talk to each other while I was helping him with something. We simply said to each other what we were doing. If I was helping him transfer from the bed to his wheelchair, he might say, “I’m going to count to three and then you’re going to sling my ass from the bed to the wheelchair.” I would repeat that back to him, adding, “First I’m going to confirm that the brakes are on.” We would wink at each other after we had a plan. It helped us stay on the same page, but it also gave us a chance to be silly and loving.

Another thing we did was to constantly express our admiration and appreciation for each other. We both recognized that the other one was working hard, even when things didn’t go as planned. When he fell while walking across the dining room and it took us an hour to get him up again, I told him how much I appreciated the effort he was putting into walking with his hemi-walker and he expressed his appreciation for my patience. We both reassured each other that we would eventually get him up.

Because I needed to be available to him at all times, we got really good at telling each other what we needed. When I got frustrated, I couldn’t just walk away and leave him alone because he needed me for so much. When he got frustrated, he couldn’t leave without me helping him. We learned to say to each other, “I need to take a few minutes to collect my thoughts” or “I need a few minutes to myself.”

Of course we both had moments of crankiness, being short-tempered, and the like, but we also became quick to apologize. We were both angry at the stroke, not at each other.

I wish I could have learned these lessons in communication, patience, appreciation, and compassion sooner and in some other way, but I am grateful that my husband and I got to do that growing together.

Accessibility + Dis/ability, caregiving

Disability is not a catastrophe

One of the ways I see ableism sneak into our lives is by the way we assume that disability is a tragedy and that the lives of disabled people are grim and hopeless. My late husband was disabled by his stroke and we had many challenges learning how to navigate life post-stroke. At the same time, our lives post-stroke were wonderful. 

 I recently told a new acquaintance about my late husband having a stroke and her reaction was so refreshing: she said, “That must have been intense” rather than “that must have been awful,” which is how most people react. Her response reminded me of Sallie Tisdale’s suggestion in Advice for Future Corpses (and Those Who Love Them) to think of something as difficult rather than bad.  

When we label something bad, it is easier to attach shame to it and avoid talking about it. That is not the case when we label it difficult. Humans may not always like things that are difficult but we respect them. My husband and I had many difficult days after his stroke. Some of those difficult days were the best days of my life so far. 

I’ve noticed how differently people react to two of my recent unusual experiences. When I tell people I went to Antarctica, they usually exclaim, “Wow! That’s amazing!” or something like that. They want to know about the experience, they ask to see pictures, and they listen intently to my stories. But when I tell them I was my husband’s caregiver for a year, they usually look horrified and say something like, “Oh, no! That must have been awful!” Very few people ask what it was like or for any detail. If I persist and talk about it, they often look uncomfortable. 

Yet, both experiences were mind-expanding, challenging, tranquil, anxious, and astonishing. The trip to Antarctica was by choice and the caregiving was by necessity, but both experiences were ones I cherish. 

I think people simply assume that the adventure of being my husband’s caregiver was a catastrophe while going to Antarctica was a wonderful adventure. 

Sudden, unexpected disability is certainly challenging. My husband and I had to adjust nearly everything about our lives and we had to do it with no notice. The adjustments were often awkward, sometimes expensive or time-consuming, and often felt very unfamiliar and so seemed off. But as we got used to each adjustment, it came to feel normal to us. 

People who are not used to helping their partner use the toilet assume it is a horrifying experience, but once we learned the logistics of it, it was just part of our usual routine. We had some of our best conversations while I was helping him use the toilet, as well as some of our biggest laughs. 

Considering that most of us who live long enough will become disabled at some point in our lives, it makes more sense to approach disability as a normal part of any life. We don’t have to look forward to it or even like it—there are many parts of life we dislike (paying taxes, for example, or flossing or job interviews), but we accept them as normal and that impacts our attitude toward them. We may feel trepidation and even some dread around job interviews, but we don’t avoid people who are on the job market. We don’t plug our ears and shout “la la la!” when they talk, but when I start talking about being my husband’s caregiver, many people do the equivalent of plugging their ears. 

And then there are those who perk up, relieved, I think, that I am talking about it. I want more of us to perk up or at least not turn away. 

Hearing and vision will fade, mobility will slow, and anxiety and mental illness will impact many of us. If we refuse to acknowledge that, our fear will be magnified and the avoidance and secrecy around disability will make it that much harder to talk about it. 

anxiety, grieving, life skills

Cutting Wire and Shifting My Narrative

My late husband was an excellent gardener. I have many memories of him puttering around our yard, doing mysterious things that he didn’t tell me about in detail that resulted in glorious looking plants. I occasionally weeded and one time I ran out to put buckets over the plants during a hail storm, but I couldn’t be trusted to do anything else.

I’ve always been hapless with plants. I get nervous when someone gives me a plant, often apologizing for the carnage I know will inevitably result.

Knowing that my gardening specialty is killing plants (he sometimes joked that when he met me, my front yard had a scorched earth aesthetic), my husband hired a gardener after his stroke to take care of the front yard. He wanted to be able to look out the window and see flowers.

The back yard was completely forgotten about. My husband only got out there a handful of times after his stroke and everything looked dead to me, so I put my energy toward other things.

The past couple of months, I’ve had to walk through the backyard regularly to get to the garage, which I’ve been going through. Last month, I noticed greenery in two tall planters Tom had built under a trellis. I investigated and used my handy plant-identifying app to learn that one planter had salvia and the other silver lace vine. I vaguely remembered him mentioning silver lace vine—he bought it because he liked the name. Both looked surprisingly healthy considering I hadn’t noticed them in nearly three years.

It felt like a bonus connection to Tom making itself known. I am especially attached to the silver lace because I recall him talking about it. I remember him standing on a ladder, weaving the vine tendrils in and out of the trellis to encourage them to climb.

This weekend, I weeded the two planters and did some vine weaving myself. Many of the vines were reluctant to stay in place in the trellis, their own weight pulling them out. I thought, “A good gardener would probably wrap a little wire around the vine and trellis to keep it in place.” And then I sighed because I am not a good gardener, and besides, I didn’t have any wire or wire cutters.

Then I remembered the garage. I’ve gone through all the big items in there, but there are still many drawers and cabinets full of all the mysterious tools and supplies a good gardener (and carpenter) would have. Surely there had to be wire and wire cutters in there!

But I’ve been so intimidated by the drawers and cabinets. Part of it is the overwhelm of looking at a drawer full of things I can’t identify . . . am I looking at materials related to electrical work? Drywalling? The sprinkler system? Between my poor vision and my general ignorance, I don’t know. What I do know is that these things meant something to Tom, and that’s sometimes enough to send me into a meltdown.

But this weekend I had a mission: I needed wire and wire cutters for Tom’s vines. I opened the first drawer gingerly and felt flooded with the usual feelings: too much to look at and try to understand, memories of Tom in the garage, the voice in my head saying, “You idiot. You can’t garden and you don’t even know what wire cutters look like.”

Instead of turning around and leaving the garage like I normally do when those feelings hit, I reminded myself that the vines needed me to persevere.

“Hey, Siri,” I said to my phone. “What do wire cutters look like?”

Drawer number nine had wire. Drawer number ten had both pliers and wire cutters, and I was able to tell the difference thanks to Siri.

Armed with wire and wire cutters, my vine training improved immediately, and as I secured vines, I even found a few bits of wire Tom had placed on the trellis. It was proof that I was doing something a good gardener would do.

Tom always looked so peaceful when he worked in the garden. While I tried to hurry up and get it over with, he relaxed into it. This weekend, for the first time ever, I felt competent in the garden.

Actually, that’s an understatement. I felt like a total badass. Not only had I gardened competently, but I had found and used a tool! When I saw my daughter later that day, I couldn’t wait to tell her what I’d done, and being familiar with my tool ignorance, she was impressed. “You’re a girl boss!” she told me.

That might be a stretch, but I can train a vine and cut wire, which the Elizabeth of a few years ago would be mighty impressed with.  It’s a bittersweet victory. I’m proud of myself and feel connected to Tom when I use his wire cutters to tend his vines, and I wish so hard he was here to do it himself.

Accessibility + Dis/ability

When the Door Opens for Everyone but You

Imagine a new friend invites you to a party at their house. When you arrive, you knock on the door, but nobody answers. You try the door but it won’t open. You step over to the sidewalk to check that you have the address correct. From the sidewalk, you notice other people arriving and having no trouble getting in, but when you return to the door, it won’t budge for you. You text your friend, but they are probably busy greeting guests and don’t respond to your message. Finally, you decide to ask the next person arriving to hold the door open for you but when you do, they say, “Well aren’t you high maintenance?” They were probably joking, you tell yourself, but before you can respond, the door has swung shut again. By this time, you feel very dejected, not to mention worn out from pulling and pushing on the door. You are now in no mood to socialize. You go home, wondering what just happened.

The next day your friend texts you, apologizing for not seeing your message the night before. You are still too confused and exhausted from the experience to have a conversation about it, but the next time you see your friend, you explain that you tried to get in but couldn’t open the door. They look at you with confusion. “Nobody else had any trouble,” they say. “Why didn’t you ask for help?” You want to explain that you did, but you’re already feeling a bit foolish, so you just let it go.

You might laugh off this odd occurrence if it happened only once. Now imagine that this happens every day, everywhere you go: at work, at the grocery store, at restaurants, at school, at church, at the homes of every friend and family member. Nobody else seems to have trouble getting in. It’s just you.

This is what it’s like for a disabled person trying to access spaces that are designed with only non-disabled people in mind. You can take this basic metaphor and extend it in different ways to understand the experience of a disabled person. For example, as a vision-impaired person, I can usually get into a space but then I often can’t access what’s happening in the space because the signs, slides, handouts, etc. aren’t visible to me. A neurodivergent person may, like me, be able to physically enter the space, but then may find the social cues others notice to be invisible to them.

It’s frustrating and confusing. When I first can’t see what others see, I often don’t even know they see something I don’t. I sometimes wonder how everyone else knows where to go for a meeting—it often turns out there are signs that I don’t see. Asking for help is often unproductive because I don’t know what I’m missing so I don’t know what to ask for. Or, like the person who asks for help getting into the party and is met with a sarcastic response, my requests for help are greeted with snide comments because my disability isn’t apparent. (I am so tired of people pointing at signs I can’t read when I ask for help!)

As my hypothetical scenario shows, there’s no malice on the part of the friend who throws the party or even the people who don’t help. They are just oblivious to the plight of the person who can’t get in. But the lack of malice doesn’t make the situation easier for the person who can’t get in.

Last week I spent a few days in Washington, DC, doing research related to disability at several national sites. I saw lots of gestures toward accessibility that I appreciated—and yet, the doors still don’t open easily for everyone.

The National Mall: I was surprised to learn that the FDR memorial is the only one of the 100+ memorials and monuments on the National Mall to include Braille on some of its exhibits. All of the memorials and monuments have brochures in Braille available and are wheelchair accessible. A park ranger explained that the FDR memorial includes Braille as a nod to FDR being disabled himself. (I was surprised at how powerful it was to see the statues depicting FDR using his wheelchair—I’ve seen wheelchairs in photos, but I don’t think I’ve ever seen one in a statue.)

As much as I appreciated the availability of Braille brochures at the sites, every time a disabled person has to ask for accommodations, they are the person trying to get into the party at the house where the door seems to open for everyone but them. That feeling of not being able to get into the house where the party is compounds over time. Asking for a brochure isn’t a big deal. Having to ask for a brochure constantly, day after day, wears a person out. Annika Konrad calls this being worn out feeling access fatigue.

Gallaudet University: Another day I went to Gallaudet University’s National Deaf Life Museum. The museum itself was very thought-provoking, especially the exhibit on HIV/AIDS and the Deaf community. The title of the exhibit was “Left Behind” and it focused on how Deaf people didn’t have access to information about HIV/AIDS during the epidemic.

The museum is in a beautiful campus building that exhibits the traditional academic architecture Jay Dolmage talks about in Academic Ableism. From the front, it appears the only way in is up a foreboding set of stone steps. I walked around the building looking for a wheelchair accessible entrance out of curiosity and did find one, but there was no indication at the front of the building where to find the accessible entrance. A person using a wheelchair would likely need to ask a random passerby for help finding it.

I want a world in which the doors open for everyone, but I wonder if it’s even possible. Surely it would be possible to put an attractive and high contrast sign in front of a building indicating where the accessible entrance is—or better yet, make the main entrance accessible. Design Braille into the next monument. Find ways to prop the doors open.

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.