Waiting: A Pandemic Journal
While the world self-isolates, my mother wakes up alone in a hospital locked to visitors.
The first time I call the hospital, they tell me to call back later. The second time, before the nurse connects me to her, she warns me that my mom is not having a great day. They just switched her to a new room, and she’s not happy about it.
My mom tells me that it’s good to hear my voice. Then she tells me that they are constructing a whole new hospital wing outside her door. This hospital she’s staying at is also a theatre, she tells me. She says the construction has upset some of the patients, so she has to watch her back, and watch some other people’s backs too. She says the Canadian government is sending lots of food to her though, so I shouldn’t worry.
I try not to.
My sixty year-old mother is, like many people, totally isolated from friends and family at the moment. Unlike many people, however, my mom is not at home. She is laying on a hospital bed. She is particularly vulnerable right now. She has an as-of-yet undecided neurological condition that has puzzled her doctors for months.
Since COVID-19 precautions ramped up over the last week or so, the hospital closed its doors to all visitors. My mom is in a small beige room, alone, relying on masked nurses to feed her, change her clothes, help her in and out of bed, and help her walk.
A couple weeks ago, before the province had declared a state of emergency, my Dad was going to see my mom at the hospital twice each day. At meal times he’d hold a juice box carefully in front of her so she could sip. He’d say how ripe the grapes on her plastic tray looked, in the hope that she would eat two or three. Her clothes have started to envelop her shrinking body. She’s lost at least fifteen pounds over the last few months.
My mom spends a large part of her day caught between sleeping and waking, unsure of where she is and what is real. She can’t hold her head up normally. She has tremors. Spasms. She can’t walk by herself. Sometimes it takes her five minutes to figure out how to sit down, even with help. Sometimes her muscles cramp up so tight that she just writhes in pain.
Sometimes she will try to speak but she’ll stutter and the words come out wrong. Her brain is trying to find the nouns and adjectives to use but it’s looking in all the wrong places.
Something has disrupted the communication between her brain and her body.
First the doctors said Parkinson’s — she had the tremors, the muscle rigidity. They put her on Parkinson’s meds. Those didn’t work. MS was on the table for a while. Tests were run. It wasn’t MS. Psychologists suggested catatonic depression. Just a few weeks ago the doctors were saying the only treatment they could recommend was ECT — electroconvulsive therapy. We were reassured that it’s nothing like in the movies.
Now her doctors think what my family feared for a while — that this could very well be a serious neurological condition. They just don’t know which one yet. I can’t stop myself from googling her symptoms, piecing together best and worst case scenarios. I’ve been spending more time on WebMD than anyone should.
Her cognitive decline points, possibly, toward dementia. At first this was hard to believe — she is only sixty. I used to think of dementia as something that only occured in elderly people. Lewy Body dementia is a strong candidate, according to physicians who have seen her, but no one is making that call yet. We have to wait until June for her to see a neurologist with more expertise in these kinds of conditions.
The symptoms come and go. Sometimes she makes no sense. Her ideas are paranoid and scattered. Sometimes she seems, mentally at least, to be perfectly fine.
This never lasts.
It is impossible to convey the worst of it to anyone. My Dad, my siblings, me — there is no way for us to adequately explain this. It is unspeakable, awful, incomprehensible, and therefore it silences us.
During the worst times, my mom thinks someone is trying to kill her. That my Dad is going to smother her with a pillow in her sleep. She’s suddenly terrified for her life, for no rational reason. She says she doesn’t know if she can take it anymore. She says she wants to strangle herself. She rolls through anxiety attack after anxiety attack, sobbing and shaking.
Seeing her like this is like watching someone’s identity and autonomy drown, inside themselves, just out of reach.
My mom was diagnosed with fibromyalgia and hypothyroidism years ago. She’s suffered from bouts of migraines, panic attacks, anxiety, depression, and exhaustion for decades. My mom always wanted to appear fine, but she was never well, and we never really knew why. We still don’t know why.
All we know is that in the last year she’s gotten much, much worse. In mid-2019 she underwent relatively simple surgery to remove her gallbladder, and she has never been the same since.
At age ten, my mom was a talented ballet dancer. She was accepted to the National Ballet School, and moved away from home to attend, just a kid at the time. She went on to major in Dance at York University. She met my Dad there. They got married when they were twenty-five years old. They had me when they were thirty years old, and my sister and brother over the next decade.
Now, at age thirty-one, I consider that my mother had a one year-old baby, at the age I am now. I wonder how ready she felt to raise a child. (I feel like I can barely take care of myself, so the idea of a small helpless person relying on me for everything terrifies me at the moment.)
It occurs to me that my mom has never told me that much about her interior life. Most of what I know about her life before she had kids is through other family members, or faded photos. I get the impression that her kids never really saw her at her happiest, or most confident. We never got to see her dance.
It’s sometimes hard to admit it, but we were never close.
My mom is so weak now that it’s hard to look at her and recognize the same stubborn parent with whom I shared years of blow-up disagreements in my teens and early twenties. I think of our strained relationship, and how I could only seem to maintain a long thin stretch of calm between us if I made sure we saw each other less, told each other less. I think of the times we let misunderstanding fester for months, or for years. We’ve both said and done hurtful things to each other.
What does any of that mean, now?
Now all I can be to her is a hand holding her hand, or a reassuring voice on the phone, or a fool trying to make her laugh, because maybe that will help her to accept relentless painful absurdity as her new reality. When I am never sure how much of her is there, what is there I can hope to understand, really, except that she is frustrated, and afraid, and wants to feel less alone?
On the other side of blame, disappointment, anger, there is a strange sense of newfound peace between us. I feel guilty acknowledging it, as though it’s selfish to find anything but horror in these terrible circumstances, but I am forced to admit that I no longer expect my mom to make sense, and without that expectation, I am free to appreciate each incomprehensible moment for what it is. It is hardly worth calling a silver lining, but it is something. I wonder if she senses it too.
I have accepted that my mom and I will never understand each other. Not in the deep way that some people connect with and relate to their parents. But we do have moments now, when we can try to be something good for one another.
The hospital’s change in visitor policy is just one small part of the worldwide response to COVID-19. Right now we are all feeling isolated, feeling unsure. I have heard the word ‘unprecedented’ an unprecedented number of times.
Our city and province have declared states of emergency. The USA has overtaken China in total number of COVID-19 cases. People are afraid.
Yet, there is still good news. Across the world, in Australia, my cousin buys a 3D printer and starts making pieces of equipment for use at the hospital where he studies medicine. People sew face masks for healthcare workers in need. My friends share videos of themselves playing music on their balconies, in their living rooms. I’m comforted at a distance by the sounds of their voices, their strumming guitars.
I try not to think about my mom.
From our couch, my partner checks an online spreadsheet. He’s collaborating with others to connect people who want to help with self-isolating people who need help, in whatever capacity — usually they need groceries delivered. Last time we checked, over seventy people had asked for, or offered to help. Thanks to this care network, a man buys and delivers groceries to an older couple with disabilities and no family in town.
I try not to think about my mom.
I wear disposable gloves to the grocery store. Grocery shopping, once a mundane activity, is now the most dangerous part of my week. A string of nostalgic 1950’s era tunes play for the few of us perusing the aisles. I wonder who chose this playlist, since, at a glance, there is no one over forty here. I watch as tense shoppers skirt past one another’s carts, caught between politeness and caution. Over the speakers, the singer croons to ‘save the last dance for me…’ and I have the uncanny sense that none of this is real — we are for sure in a Fallout game. Either that or I’m just in a scene in a movie about my own life, directed by me, in the future.
Hey, I’ve been stressed, okay?
I shop as quickly as I can. I have come here only for the essentials, after all. There is still no toilet paper. I settle for a chocolate orange on my way out.
I come home to a message from my employer. They are warning us there are likely to be layoffs on the horizon.
Nothing is certain.
I try not to think about my mom.
Lately, I haven’t been able to post much on social media. How can I say what I want to express in a Facebook status, or in an Instagram post? How do I curate my life right now into digestible snippets? How do I hashtag or meme the present moment when it just keeps expanding? How do I bottle it? I have tried, and I keep going back for bigger bottles.
Tragedy and uncertainty are hardly new elements in our lives. Life is always changing, and therefore always incomprehensible. Sometimes, however, dire circumstances renew the clarity with which we can see this truth. During these last few weeks, I’ve been thinking, as many others have, about how quickly things we take for granted can all be taken away — lives, routines, expectations for the future.
I feel pressed into the center of a twofold uncertainty — that of a global pandemic and its economic and social ramifications, and that of my mom’s evolving struggle with her health. My family is waiting on so many answers, that may or may not ever come.
I try to take stock of what I do have. My news feed, after all, is filled with reminders to practice self-care and gratitude. I am thankful that my brain, hands, and smartphone are all working at the same time. So, I try to write something, because it feels productive. It feels helpful, and I have rarely felt more helpless. I want to connect, even through the pixels of a screen, to cast out a thread of my own experience. To see if anyone catches it.
The truth is that I’m not good at sharing, not this stuff, especially not on social media.
It often feels like current events fly past before I’ve digested them, and with them the opportune moment for comment. It’s too easy to feel trapped in infinite hesitation. I worry that in hindsight I’ll regret hitting ‘post’, that I’ll have made a mistake and over-shared, that I’m setting myself up for a sucker punch, that whatever it is I’m trying to say is just another drop in the bucket, and I stop myself from sharing the biggest pieces of my life with people.
Sometimes I worry that, like my mom, I’ll open my mouth to speak, and no one will understand.
