Monthly Archives: March 2023

grieving, mental illness

Welcoming Depression Back into My Life

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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

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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

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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.  

grieving, normalizing what should be normal

One Way to Normalize Grief: Just Be Present

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My husband died over 20 months ago, a fact that strikes me as unfathomable. On the one hand, the loss still feels hard and raw. On the other, my life has changed so dramatically in the time. Part of me feels like, “What?! Only 20 months?! It feels like a lifetime!” and another part of me can’t believe I’ve been a widow for this long.

For the first year after he died, I didn’t worry about anyone getting tired of hearing me talk about him or my loss. I figured everyone would give me a one-year grace period—and they pretty much did. But now that it’s closer to two years than one year, I am starting to wonder if people are tired of hearing about my late husband and my widowing. To be clear, no one has told me they are tired of it; the pressure I’m feeling to “move on” is internalized messaging.

Yes, I did just admit that I am putting pressure on myself to “move on,” after saying, just last week, that the distinction between moving on and moving forward is important to me and that I’m a proponent of moving forward.  It is important to me, but having been socialized in a culture that wants people to move on means I have internalized that messaging.

I spent most of yesterday morning crying, alternately curled up on the couch and wandering around the house picking up photos of my late husband, his harmonica, his life jacket, and other mementos of his. I realized at some point that I needed to talk to someone who would understand and that’s when my self-consciousness kicked in. “He’s been dead for 20 months,” I thought to myself. “Everyone is tired of you moping.”

Luckily, I recognized this self-talk as inaccurate and called my wonderful brother-in-law, who didn’t seem one bit tired of me moping. We told stories about Tom, joked about his ability to spend money, and were just sad together. He encouraged me to call any time.

I did not feel less sad after talking to my brother-in-law, but I did feel less alone. I will never stop feeling sad about my husband’s death, but I am in general having fewer days like this. I’ve heard other widows say that the time between the hard days gets longer but the hard days never go away. I am experiencing that.

What I appreciate most about my call with my brother-in-law is that he didn’t try to cheer me up and he didn’t tell me I need to do anything differently. He just let me be sad and he joined me in that sadness. He normalized my sadness, and when I said, “I feel like I shouldn’t be like this after 20 months,” he reminded me that there’s no timeline for grief.

I just listened to an interview with Megan Devine on Jameela Jamil’s podcast about why so many people don’t support others in grief this way. I’ve mentioned Megan Devine before—she created the only grief journal I liked, in contrast to several others I looked at which enraged me to the point where I threw one across the room. Devine is the psychoanalyst, grief advocate, and widow behind Refuge in Grief, an online grief resource that stands out for its gentle accepting attitude toward grievers.

In the interview, Devine says our own fear of losing a loved one gets in the way of us supporting folks who are grieving. “We don’t like to think about the people we love dying or disappearing,” she explains, so instead of listening and being open to the pain our friend is experiencing, we try to fix things for them. Devine says, “It’s easier to look at someone who’s in pain if you can fix that for them, you feel more powerful, you don’t feel helpless.” She goes on to say, “We haven’t learned what our role is in someone else’s pain.”

I am learning through my own grief experience about the value of being present for someone else’s pain. When we listen to someone without trying to fix their pain or cover it up with cheeriness, we are being present. When my brother-in-law let me be sad and shared his own sadness, he was being present for me. By being present and not judging me for the depth of sadness I am feeling, he helped me pull back from judging myself.

When we try to fix the pain or distract from it, we imply that it is wrong or unhealthy, when in fact, the opposite is true. Maybe we can think of our role in someone else’s pain as one of witnessing. By witnessing and being present for someone else’s pain, we show that it is normal, that the person feeling it is normal.

grieving

Moving Forward: Adjusting to New Rhythms

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I think a lot about the distinction between moving on and moving forward after someone dies. Moving on means putting the loss behind you and going back to living life the way you did before the loss occurred. Moving forward is quite different; it is integrating the loss into your life so that grief isn’t necessarily something you stop experiencing but you learn how to carry it with you into your future. Moving forward acknowledges that the loss experience will change how you live your life.

Being widowed has changed me. In October I wrote about trying to come to terms with the fact that I will never again be who I was when I was with my husband.  I talked then about how I still wanted to be the person I was before my late husband died but that I was trying to focus on who I am becoming as a result of the loss. I noticed then that I was more open and vulnerable and more comfortable taking about death.

Lately, I am struck by how different the rhythm of my days is now. Widowed people often find that the loss of their loved one impacts their lives in this way.

For my entire relationship with my husband pre-stroke, I went to bed around 9 pm and woke up at 5 in the morning because he was an early riser and liked to chat in the morning. I learned that serious discussions with him went better in the morning than if I waited until after work. Now that I don’t have to get up so early, I find myself sleeping until 6 and going to bed around 10 pm, but every night when I go to bed, I second-guess my alarm setting. Waking up at 5 for so long made that feel normal and setting my alarm for 6 feels off.

Other habits are changing to accommodate how my life is now. Tom enjoyed watching movies and TV, but I prefer to read, so most nights and weekends I read. What I eat has changed significantly. Tom was a meat and potatoes guy—except for when he was eating nachos or Mexican food, which he adored. Now I eat almost no meat. I haven’t eaten nachos in nearly two years. (The thought of nachos makes me smile, though—one time when I got back from being out of town for a few days and noticed that all the meals I had left for him were uneaten but the cheddar cheese and chips were gone; he admitted to having eaten nachos every night for the five days I was gone).

The shape of my days is different. After his stroke, my day was scheduled around taking care of him. In the morning, I would wake him up, help him sit up and bring him his coffee and his morning medications. We would chat about the day and then I would walk the dogs and work out while he drank his coffee. After that, I would get him dressed and help him get into his wheelchair. He would watch TV, read, or sharpen knives (for real, that was his main hobby after his stroke) while I worked in my office for a couple of hours. I would take a break at some point to help him stretch his arms.

At midday, I gave him his midday medications and made him lunch. He usually had speech, occupational, or physical therapy in the afternoon, so I would help him go to the bathroom before that. If he had speech therapy, I worked in my office, but I usually participated a bit, even if just to cheer, in his occupational and physical therapy sessions.

In the evening, I made dinner and we ate together. Then I got him ready for bed and brought him his evening medications. After he was in bed, I would massage his legs and feet.

My entire day was structured around providing care to him. It was hard work but work I loved. The intimacy of caring for someone at that level is beyond words. When my daughter was born and depended on me for everything, I remember feeling similarly and I assumed part of the connection was that she had been part of my body for nine months. But the connection I felt to my husband while taking care of him was the same—finding every sight, smell, and sound utterly delightful, feeling absolute peace and completion when he was comfortable and happy.

As I continue moving forward, I notice intensely contradictory feelings. On the one hand, I am very happy, feeling loved by and connected to so many people and living a life that is full of joy and peace. On the other hand, I am achingly aware that as I move forward each day, I also move farther away from the beautiful life I had with my husband. I miss having those moments of care punctuating my days.

I recently remodeled my bathroom and had a tile installed that is inspired by the Japanese art of kintsugi, in which broken pottery is repaired with gold, leaving the restored piece with deep gold veins that call attention to themselves. Every time I step into that bathroom and see the tile, I am reminded that I am turning the pieces of my life into something new and beautiful. Those pieces were shaped by the love I had with my husband and they still exist, but they are held together now with something new that I am creating.