It’s been a long time since I’ve posted here, and for good reason, but I’ll get into that. I’m not going to promise consistency or declare that I’M BACK! because I just really don’t know. Life is hard – for me, for you, for everyone, especially the past few years. We don’t really owe each other explanations, do we? That’s something I’ve learned – or, rather, something that I’ve known for a long time but that I’m only now finally starting to feel: I don’t always need to reply to emails or texts or messages promptly. There are so many demands on my time, and only I know what I’m capable of. Consideration is nice, but I don’t owe anyone an apology if life takes me away from my devices longer might seem polite. I’m trying to stop saying “I’m sorry for my late reply,” (this article made me feel so empowered in this regard, check it out) so I definitely don’t need to say I’m sorry for failing to update a blog that no one was counting on anyway. I feel like sharing here again, though, so let me start with an update and a brief explanation.
First, the name. This blog used to be called “Memento Mori.” I liked that name! It felt like it captured what I was up to most of the time as a writer and artist: excavating the past, digging through memory, turning artifacts around in my hand and my mind’s eye to see what they could teach me, what was overlooked. I’m still doing that – in life, as an artist, and as a person – and that’ll still be what this blog is about. But I’ve been coping with some new stuff, too, and I want to talk about it. I have been crying in public.
The worst time was this past summer. I attended a weeklong writing conference in Bemidji, in northern Minnesota. It was my first time going that far up north. It was early June, so I was warned by family members who knew the area better that it would probably be cold. I wasn’t worried about that, cold I can usually deal with, cold would have worked nicely with what I had planned for that week. My family has two cars, one of which – a Nissan Sentra that broke down on us in Oklahoma City on our move from California to Minnesota – has no working AC. I didn’t want to leave my husband and two kids stranded in St Paul, which does get hot already in June, without AC, so my plan was to take the Sentra, and drive with the windows down if it got warmed. But as the day approached the forecast for Bemidji steadily into the high 90s. I left early in the morning from St Paul to beat the afternoon heat. I kept my windows down for the entirety of the four-hour drive. I made good time. Still, when I arrived in Bemidji just after noon, it was already over 100 degrees and I was in trouble. I checked into my dorm room, closed the curtains, stripped off my clothes, and pointed my box fan at my face while I lay on my bed in the dark, but it was too late. My body had already absorbed too much heat. The next day the conference officially started, another very hot day. I stayed in AC as much as possible, but I had to walk to the panels, to my workshop, back to the dorms, and to the dining hall. That night, I woke up at 3 am to excruciating muscle spasms that wouldn’t let up. I didn’t get back to sleep for hours, and I missed most of the next morning’s first panel, which was being led by my workshop instructor. I was still in so much pain, and at the end of the presentation, as I started to walk up to my instructor to apologize for my tardiness, an acquaintance spotted me and asked if I was okay. I was in pain, I was a little embarrassed at being late, and I was exhausted. I wasn’t sad. Really, sadness didn’t make up any part of how I was feeling. But at that moment, I started crying. Visibly, publicly, with tears streaming down my face. It was completely out of proportion to my feelings, but I couldn’t stop. For almost an hour, as quietly as I could manage, I cried.
I have a condition called pseudobulbar affect, which is defined in my Google search results as “pathological laughter and crying.” It sure sounds serious, but it’s really the least of my worries. I haven’t always been like this. I don’t cry easily or often. I didn’t even cry when I found out my own father died (but that’s a much longer story). It’s probably a combination of my inherent temperament – an introvert, I’m used to internalizing thoughts and feelings before expressing them outwardly – and the more dysfunctional aspects of my upbringing. You aren’t going to see me cry unless you’re already very close. I want to protect myself, but I also don’t want to burden others unnecessarily, and I learned to be emotionally self-sufficient by necessity. Or, at least, I used to be that way.
This wasn’t the first time something like that happened. The year before, I traveled to Portland for a writing workshop with Lydia Yuknavich and the wonderful staff at Corporeal Writing. The workshop spanned several days, and I loved almost every minute of it. The whole experience was a tremendous gift: I was fortunate that year to be named a 2021 McKnight Artist Fellow, and part of that generous award was reimbursement of expenses related to professional development – traveling to attend a workshop like that wouldn’t have otherwise been possible. I took the Empire Builder train from St Paul to Portland. It took two days, and I had a coach seat so I slept with my seat reclined and ate out of the cafe car the entire time – definitely nothing fancy, but I spent as much time as I could in the observation lounge looking out the window at the changing scenery – the plains of North Dakota, canola fields in bright yellow bloom, giving way to hills and foothills and eventually climbing through the Rocky Mountains in Montana. The sun went down on the second night somewhere in western Montana, and I woke up at dawn the next morning on the Washington side of the Colombia River.
This was the first time I had been to Portland since I moved with my husband and two-month-old daughter in 2015, and I was as excited to be back as I was about the workshop. It was still morning when the train pulled into Union Station in Portland’s Old Town. I had one suitcase, a backpack, and a hotel room that wouldn’t be ready until later that afternoon. No problem, I thought. I knew this city well, and I felt comfortable getting around. I made a reservation on a luggage storage app so I could spend the morning sightseeing. The dropoff location was a little bit of a walk – the north end of the Pearl District, so I had to walk across Old Town and through the Pearl, but I didn’t think anything of it when I made the plan – I used to walk everywhere when I lived there. It was summer, though. July in Portland. Very hot as soon as I stepped outside the train station. I kept to the shade, but it got to me. By the time I got to the dropoff location, I was very unwell. I had vertigo and felt like I would fall over if I wasn’t careful. My balance was off and I took every step with caution. Instead of a glorious day of sightseeing, I found the closest restaurant and stayed much longer than the waiter seemed to appreciate, drinking glass after glass of ice water and soaking up the air conditioning until I felt a bit closer to normal. I had a great time in Portland over those days. I loved the workshop and felt inspired, I spent my time to myself walking around my old neighborhood and visiting my favorite spots. I’d inevitably get overheated and find some air-conditioned spot to hide out in, and I’d return to my hotel room at the end of the day completely spent. I felt okay at the workshop itself until the last day. On that final day all of the workshop participants were invited to read their work. The AC in the building was loud, so the staff decided to turn it off. The temperature started to rise in the room, and I started getting shaky, dizzy, and lightheaded. I wasn’t sad, but I felt all of a sudden like I would cry, so I excused myself to the bathroom. Once there, I ran cold water over my wrists and just sobbed, for what felt like a very long time. I didn’t come out until I had control over myself – I couldn’t will myself to stop crying, I found. It just had to happen on its own. It was the first time anything like that had ever happened to me.No one saw me crying that time, but I’m sure they noticed my prolonged absence. I felt humiliated.
See, the pseudobulbar affect is part of something bigger. I have multiple sclerosis. Or, rather, I’m 99% sure I have multiple sclerosis, and I’ve paid thousands of dollars and been subjected to multiple painful tests by three different neurologists over the past two and a half years trying to get a conclusive diagnosis – that is a much longer story, involving lots of medical gaslighting, and I’ll be talking more about that. I’ve had symptoms on and off for more than a decade, but things started getting really bad in the summer of 2020, including weakness, tremors, vertigo, fatigue, painful muscle spasms and spasticity, temporary vision loss, numbness and tingling, nerve pain. Lots of pain, really. That initial flareup calmed down after a couple of months, but all of the symptoms have remained, just at a lower intensity. Heat, cold, exercise, fatigue, and stress trigger them. The biggest one is muscle spasticity, which feels like extremely painful cramping, sometimes all over my body, but especially around my ribs and shoulders. Some days it hurts all the time, to a degree that is incapacitating, and I am someone with a very high pain threshold. Sometimes I have a hard time walking or moving and sometimes I shake visibly, but most of the time, all of my symptoms are invisible. Except for the crying – let me get back to the crying.
Pseudobulbar affect is a funny name. Pseudo means false. In this case, pseudo refers to the fact that the condition mimics a “bulbar” lesion on the medulla oblongata, but over the course of this illness, I’ve struggled so much with the idea of falseness, fraud, and fakery. I’ve been treated like I’m faking it, not just by doctors, but by people who are supposed to care about me. I’ve questioned myself – I still do. Doctors and friends seemed to think it was in my head, maybe they were right? Especially when the symptoms disappear for a little while for no apparent reason. I think, were they even there to begin with? Was it as bad as I thought? My second neurologist told me she couldn’t treat me for anxiety since that seemed to her to be the only thing that was wrong with me. I don’t suffer from anxiety. I did have – still have – six lesions on my parietal lobe that I can see clearly on the same MRI scan she was looking at, but even with that physical proof, I still considered the possibility that she was right, that it was all in my head. Nothing is visible when I look in the mirror, or when anyone looks at me. But then, I cry.
I haven’t mentioned the crying to my current neurologist. He is the first doctor to prescribe me medication for my pain, to delay another flare-up, and to slow my disease progression. He hasn’t so far gaslit me, but he also doesn’t seem terribly interested in hearing about my symptoms. Until I have a new lesion, he shrugs his shoulders as if to say what can I do? I go out of my way to seem sane and reasonable to him. I’m terrified he’ll agree with the first two doctors and say it’s all in my head, and withdraw treatment. Pathological crying seems like it could undermine me. Pseudobulbar affect is also called emotional incontinence, emotional lability, forced crying, pathological emotionality, and emotional dysregulation.
In The Expressions of the Emotions in Man and Animals, Charles Darwin described people who seem to suffer from some form of this condition: “The insane notoriously give way to all their emotions with little or no restraint … nothing is more characteristic of simple melancholia, even in the male sex, than a tendency to weep on the slightest occasions, or from no cause. They also weep disproportionately on the occurrence of any real cause of grief. The length of time during which some patients weep is astonishing, as well as the amount of tears which they shed. One melancholic girl wept for a whole day, and afterwards confessed to Dr. Browne, that it was because she remembered that she had once shaved off her eyebrows to promote their growth. Many patients in the asylum sit for a long time rocking themselves backwards and forwards; “and if spoken to, they stop their movements, purse up their eyes, depress the corners of the mouth, and burst out crying.” In some of these cases, the being spoken to or kindly greeted appears to suggest some fanciful and sorrowful notion; but in other cases an effort of any kind excites weeping independently of any sorrowful idea. Patients suffering from acute mania likewise have paroxysms of violent crying or blubbering, in the midst of their incoherent ravings. We must not, however, lay too much stress on the copious shedding of tears by the insane, as being due to the lack of all restraint; for certain brain-diseases, as hemiplegia, brain-wasting, and senile decay, have a special tendency to induce weeping. “‘
The crying comes from the damage to my central nervous system. It shouldn’t undermine me, but it does. It comes most when I push too far, when I ignore the pain, weakness, and fatigue that tells me I need to rest. I don’t want to miss out, so I pretend there’s nothing wrong with me. I attended every panel and class during the writing conference, participated in social gatherings, chatted, and smiled, and when I was finally able to be alone, I collapsed into bed, immediately. I didn’t look ill so I tried not to act ill, either. Then the crying came, and the jig was up. I didn’t want to cry, it didn’t match how I was feeling, but part of it was a relief. The only way to explain myself was to finally admit that I was sick, that I was in pain. For the first time, I told my teacher and my workshop cohort that I had MS.
Suddenly, this invisible weight that I had been carrying by myself was visible to everyone. Not everyone was helpful. Suddenly, the stoicism and strength I was working so hard to project dropped away, and I seemed weak, emotional, and dramatic. An older woman in my workshop said “I have rheumatoid arthritis and I have never cried!” She almost seemed angry. Someone else, trying to be kind, told me about the chronic pain they used to have that turned out to be a food allergy, and reassured me my own condition would improve once I found out what allergy was triggering it. They meant well. More people were kind. My teacher checked in with me and made sure I was okay. Later that night, I went for a walk with a new friend from my workshop, and my leg went numb when I tried to stand up after sitting on a dock on Lake Bemidji. She already knew, so I was able to simply ask for help getting up, and she held my hand as I walked back off the dock so I didn’t fall in the water. It was still embarrassing, but it was okay.
I guess the bottom line to all of this is that there’s something to be said for vulnerability and visibility. There are so many articles in MS spaces about when and whether someone should disclose their diagnosis to others, and they usually falls on the side of not disclosing. Like this article: “In many other cases, however, such a disclosure might be ill-advised. Most people know very little about MS. Employers and co-workers may even think that it is a terminal condition. Many don’t know that with good treatment, functional loss over time may be minimal or even zero. Uninformed people in your work environment, due to prejudice, may begin to view you as less competent. You may even miss promotions–or worse–based on this prejudice. Though this may be illegal, you may find it hard to prove. In any case, what you want are strong, supportive relationships with co-workers and supervisors, not a potential legal claim.” Or this one: “Unless someone starts talking about something MS related, there is no need for me to tell them about my MS. If someone is a close friend or becoming a close friend and you have developed trust, it might be a good idea to share your diagnosis. If you find yourself avoiding a friend because of your MS, you should probably decide whether you want to confide in your friend and pursue your friendship on a deeper level. Some people might misread your distance as not wanting to be friends as opposed to you just keeping your MS private. At a certain point, however, that privacy can negatively affect a relationship.” To me, it seems like the only reason, then, to keep it to myself is to either preempt the ablism of others or to spare others’ discomfort. I am not particularly interested in either of those things.
So I want to talk about it. I’ll be talking about it more about it here. I’ll also be talking more about all of the other things. I hope it’s useful to someone out there. In the meantime, enjoy the picture below of my actual brain – even if it does make me cry sometimes, it’s still a good one!
Crying in Public 