Everything sounds like a bad joke. A virus is infecting people all over the world. Whole cities are quarantined. The virus’s most prominent targets: the elderly and disabled people. Groups that categorize some of my favorite people. Three of my best friends are wheelchair users. My eighty-two-year old grandmother raised me. My boyfriend and my sister are healthcare professionals on the frontline of it all.
It is noon, and I am still burrowing into my twin-sized bed to avoid reality. On my floor, sit two totes full of my clothes, medical supplies, and non-perishable food items. Ready to go to Jersey. To my boyfriend’s apartment. I don’t want to leave the city. I feel like I’m betraying the bond I’ve just begun building with New York. Being holed up in my tiny apartment for the foreseeable future feels like the real New Yorker thing to do. However, I’m scared, and I don’t want to be alone.
As a child who was constantly checked on throughout the night—first in the children’s hospital and then at my grandmother’s home—I was never alone for more than a couple of hours at a time. And I have never really let myself be alone for more than a few days ever since.
I wonder, what will it be like to quarantine as a healthy person? The healing process dominated my previous days of quarantine in the hospital two years ago when I was overcoming Osteomyelitis. What would endless days be like without the driving force of getting better? Without the promise of a normal world to return to. Since quarantine began, I have not been able to cry. I am accustomed to experiencing pain and personal trauma, especially in relation to my body. But this collective pain, this earth-wide wound that won’t heal, I am not accustomed to this.
I know quarantine is never over when experts say it will be. If a doctor tells me six weeks to heal a bone or three months to heal an infected wound, I know to prepare for time and a half. I suspect this global quarantine will be much the same.
Right before quarantine began, I sat in my own bathroom in my small New York City apartment and sobbed. My boyfriend had just told me that, as expected, pharmacists will be considered essential workers. And, not as expected, his pharmacy may become a Covid-19 testing site. I felt like he was telling me he was going off to war. I sat with my elbows resting on my sink and stared at the white nothingness.
The bathroom has long been my place of escape. The important thing about the bathrooms I’ve considered ‘mine’ is that they are wheelchair accessible. Not just bathrooms that I can physically fit my wheelchair into, but bathrooms where I can independently use the sinks, showers, and toilets. Bathrooms where I can gather with my ‘wheel-friends’ to take photos in the mirror and sinks that I can roll under to contemplate my woes while warming my hands with near scalding hot water, washing my puffy face after crying.
My body is not always mine to control. Being a paraplegic, there are moments I can really feel being paralyzed. Moments I am acutely aware that half of my body doesn’t move, is atrophied, has incomplete sensation. That my inability to get up makes my entire body clench and feel frozen. I imagine myself using a table or a bar to pull myself to my feet. To be upright. And as quickly and as unexpectedly as this urge overwhelms me, it disappears. I can continue being only in control of half of my body’s reality. The other half I care for like a plant. Not a baby or a pet because babies and pets can articulate their pain by crying.
Waist to thigh, I have some links. I know when I have to use the bathroom. My stomach tightens, or my bladder feels full. I know when my jeans are not right underneath me. I know how good penetration feels. And then there are the patches. I can’t stop myself from peeing beyond keeping a very particular schedule that (mostly) prevents accidents. Knees to feet, there remain no links. My boyfriend’s bathroom, where I will be spending my quarantine, is not fully accessible. And that’s not easy for me after having an accessible bathroom since age twelve.
The toilet is tightly nestled between the cabinet and the wall. Each morning we wake up at six, so I can cleanse my bowels before he leaves for work at eight. He scoops me into his arms; our eyes still glazed over from sleep. We traverse the hallway in our underwear. He gently places me on the cushioned toilet seat. He kisses me on my forehead and slinks back to bed. Before beginning to fill the syringe with water, I sit for a moment staring at a grey tile on the floor. I try to remember what it feels like to transfer on and off of my own toilet.
I suck in too much air and squeeze my eyes shut.
Luci is (was) a Pomeranian that my grandmother gifted me in sixth grade, but they quickly formed an inseparable bond. Luci followed my grandmother everywhere; my grandmother often tripping over Luci’s small legs because she was so close to her. My grandmother often cooked Luci chicken and bought her lunch meat. They slept together in my grandmother’s bed every night. My grandmother called Luci her “little lovebug” and her “sweetie-pie.”
In contrast, she tells everyone she meets. She is not a hugger, and when I was growing up, my grandmother thought, “I love you” and “I’m proud of you” should be reserved for special occasions. When my grandmother was twenty-two years old, her mother was diagnosed with breast cancer. I feel a connection to my grandmother in this way, as a daughter who lost a mother. My grandmother became my parent, and a parent for the sixth time, at sixty-four, the age most people are just beginning to retire. She lost a child, my mother, and gained me.
Receiving this news about Luci is not so much crushing to me, as it is terrifying. Too many people are facing human losses due to Covid-19. The loss of a 14-year-old dog wouldn’t seem significant. But I know this is a massive loss to my grandmother. Being quarantined in the house that has for so long been filled with Luci’s high pitched barks and long nails clicking on the tile, seems unusually cruel. For the past few years, my grandmother has actually been saying, “I hope I go before Luci.”
I quickly thank my cousin for calling me and hang-up. I want to cry. I’ve been wanting to cry for days, but I can’t. I consider quarantining with my grandmother. I wonder what the chances are that I have Covid-19 – I reason that she is the healthiest senior I know. But then I remember that cases have begun to pop up all over New York. I can’t risk quarantining with her. But I need to do something.
While she has never encouraged my modeling career, my grandmother has always encouraged my writing. Some part of me knows she is the reason I pursued writing at all.
My grandmother was second in her graduating class of over four-hundred students. She watched her brother go off to college and become an electrical engineer. She dreamed of being a doctor. Her mother and father would not allow her to go to college. They insisted she must continue to live at home. She has almost dictatorially stressed the importance of education and independence to her four granddaughters.
My confidence in my writing heavily leans on my grandmother’s praise, since my pre-teen years, of poems scribbled in fuzzy journals and school reports. She calls writing my “talent.” She constantly reminds me I must not waste my talent.
I want to make her happy now. Consistent communication with me has been her priority since I left home for college. She calls, often twice a day, to rant about Trump or tell me about someone she ran into at the grocery store. She reports facts and incidents. But just like my childhood, she rarely shares her emotions.
I brace myself for the storm and select “Franny” from my phone’s contact list. The phone barely rings once. “Oh, Brianna.” She is crying. The only time I see my grandmother’s eyes swell with tears is when we spend a little too long remembering my mother. “The little dog has been my whole life since you’ve been gone,” I feel a sharp sting of guilt. I still can’t cry, and she can’t stop. The role reversal feels like everything else in the world right now. A glitch in the simulation. A parallel universe.
I wait a long time as she sobs. I finally say, “Gram, I’m worried about you. I have an idea. Something that might help.” We promptly begin writing emails to each other every day to chronicle our quarantine journey and to stay connected. “Now that I can’t, I wish I could hug you,” one of her emails reads alongside a recipe for quiche.
Most nights, as I write emails to my grandmother about how my cat, Shrimp, is doing or my current fears, my boyfriend Zooms with twenty of his family members. I hear jovial conversations or shouts of friendly competition as they play Pictionary together. Our lives have been vastly different. He grew up in a two-parent home with his brother. I grew up with my mother for the first six years of my life and after the car accident with my grandmother. He is close to his expansive family. I still struggle with feeling hurt by mine. He has never broken a bone. I can’t move my legs. But some nights I join him and his family on Zoom. His mom texts me pictures of the latest desserts she’s made. In this short time being quarantined, I’m maybe becoming something like a part of his family too.
I think I have too much time on my hands to spend thinking, I spent practically the entire day looking through old photos on my computer, some dating back to 2007 – pre wheelchair. Sometimes when I see a picture of myself standing, I don’t even realize it’s me. Being in a wheelchair has become so normal to me that I don’t always remember what it’s like to see myself upright. I was so cute. Thin, shapely, active. I definitely took my body for granted, but who doesn’t? No one thinks that one day their entire world is going to be turned upside down. No one tells you when it’s all going to change. I did not have a chance to say goodbye to my body, much like nobody had a chance to say goodbye to the world as we knew it before this pandemic.
I miss my body. I was a runner before. Not competitively, but just for sport. I took after my dad, who can run seven miles in one go. Now, I’m active but not as active as I was before. I have my “para belly,” as some of us refer to it as. The area where we’ve lost muscle control. It always looks either, four months pregnant or full of food. It’s been almost 11 years since everything changed, and I’m still not used to my body. It’s a different body than the one I had before. I’ve had to learn to love it.
I look at my skinny, atrophied legs and miss my muscle tone. I reach down and feel the bones in my ass practically poking through my skin. Looking at old photos and seeing how my body has changed and evolved over time makes me sad. I wish it didn’t. I can’t wait until I get to the point where I can look at an old picture of me standing upright and not feel sadness. I feel like I’m almost there, but this social isolation is making it harder. Being around my other “wheel friends” gives me a sense of clarity.
It shows me how beautiful disabled women are. It makes me feel beautiful. It makes me feel empowered. I’m realizing how much these women help with my self-image and self-esteem. I’m missing them deeply today. In February, Brianna, Gabrielle, Lucy and I gathered together and had a photoshoot to celebrate our friendship and ourselves as disabled women. It was the most incredible day, full of love and support. I’m now even more thankful that I have photos from that day to look at now.
Today is my twenty-second of social distancing. I am disabled, yes, but that does not mean I am used to this way of life. This is the first time in a decade that I’ve spent more than two or three days inside my house without seeing friends, classmates, or co-workers. I know I am considered more vulnerable than the average 25-year-old. I have an auto-immune disease. I take immunosuppressant drugs. My immune system is compromised. But there has never been a reason for me to stay in my house before this pandemic.
I am having just as much trouble adjusting as the able-bodied people around me are. My time inside has made me realize how much I have been neglecting my disabled body. I have never spent time taking care of myself. Physical therapy was always put on the backburner with the mentality that it was not going to help me walk again anyway. I don’t have excuses anymore, though. I have all the time in the world to spend stretching and exercising just to keep my body’s range of motion intact. So I’ve decided to do exactly that. I’m making a promise to myself that by the time this quarantine is over, my body will be healthier. My bones will be stronger. My muscles will be looser. I’ve been given the opportunity to nurse my body back to health, and I’m taking it.
It is the first time in three weeks. I’ve seen my father. I usually see him every Wednesday. We typically meet at his favourite spot for dinner and $6 martinis. He picked up food from our favorite restaurant and opened a bottle of our favorite wine, he was trying his best to replicate our Wednesday routine – at home. It’s not the same, I missed the fancy cocktail and plate of food, but it reminds me of my childhood when we would spend most nights on the couch together. It took me back simpler times when take-out food and movies were enough to satisfy.
Later, I took a much-needed trip to the grocery store with my mom. It felt like I was in a parallel universe. We were moving around the store like chickens with our heads cut off. Frantic and anxious. Prices? We didn’t even look. We wanted to get in and out as quickly as we could. Nutrition labels? They don’t even exist anymore. The first jar of tomato sauce we saw went in the cart, regardless of price or sodium or sugar or any metrics that were once so important to us. I lost track of time. I can’t tell you exactly how long we were in the store for, but we spent way too much money. Now, I’m so tired. I literally feel like it took everything out of me. I hope this trip bought us enough food for at least another two weeks because I don’t want to do that again anytime soon. Food shopping was something I always enjoyed. I like to cook, and I like to eat. Now it’s something I’m afraid of. I’m worried that when this all ends, I’m still going to be afraid.
It’s April 26, and I need nitrile exam gloves, they are a necessity for my routine, my medical supply company doesn’t have any. Able-bodied people have bought up all the gloves so they can wear them when they go to the grocery store. They’re not even using them right. They’re cross-contaminating everything in sight, and then they throw their gloves on the ground when they’re done with them. I found some online that I could use, but they are $20 a box. That’s insane. People are making a profit off of these gloves that are now a hot commodity, and if I do purchase them, I have no idea where they’ve come from, or if they’re what I need. I’m so frustrated. How can medical supply companies run out of items critical to so many people? I don’t know what I’ll do if I can’t find them anywhere. No one wants to help.
Part of me is thankful for this time though, Covid-19 has meant I’ve spent time out of my wheelchair. Before the pandemic, I was on the verge of having a pressure sore on the boniest part of my spine. I was doing everything to fix it, changing my wheelchair, keeping my back covered with bandages. Making sure I wasn’t wearing anything that would dig into my back. Then the pandemic happened. I’ve barely spent more than four hours straight in my wheelchair for the past five weeks. My back is completely healed, I’m definitely thankful for that, but I’m also worried about what’s going to happen when this is all over, and I have to go right back to being in my wheelchair 10+ hours a day. My body isn’t going to be used to this anymore. It’s going to hurt, and I won’t have as much time to spend stretching and improving my range of motion. It’s scary to think about.
I keep saying that I always thought of myself as an introvert, but that this period of isolation has made me realize that I’m not. But really, maybe those categories we’ve created become meaningless during a pandemic. Even the most introverted of introverts need in-person contact.
On New Year’s Eve Bri, Liv and I gathered at Lucy’s place to watch the Time’s Square ball drop. We decided to transfer out of our chairs and sit on the ground together, arms around each other, leaning up against one another for support, as wheelchair users it’s not often we can be that physically close, so it felt very special, it’s even more special now. We’ve been getting used to video chats, but that doesn’t make up for the lack of in-person contact. I miss that a lot.
I’m privileged to have a supportive and amazing group of friends, including my ‘wheel-friends.’ I know there’s been generations of disabled people, who were forced to be isolated, children barred from attending school or getting an education, people in long-term care facilities because they cannot find or afford an accessible home. This could have been me, this could have been any one of us.
My isolation is not at all as unjust. It’s likely going to be temporary.
I have been having random crying episodes. As someone who self-proclaims to not be a crier, this was alarming. I cry when I read news articles when I text my friends and do the dishes. I have felt guilty about crying. I am safe in my apartment. I have what I need, and I am not putting my life at risk like all the essential workers are. As the weeks’ progress, my grief is subsiding, but I am having a tough time sleeping. I can’t fall asleep, stay asleep, or wake up at a decent hour. I am having vivid, strange dreams that leave me feeling like I didn’t sleep at all.
All I can do is hope we learn from this experience and do things in better ways. We have to.
It’s not like I haven’t done this before. How many times have I spent days on end in bed or lying on the couch, unable to do anything due to pain, weakness, spasms, bloating and fatigue – all things which flare up at different times because of my conditions. I did the last semester of my bachelor’s degree over two semesters, and most of my work from bed. I chose a master’s degree that offered remote learning because I knew I couldn’t manage physically attending class when I was putting all my effort into being able to work. I used to let people think I was rude or antisocial or just lazy because I didn’t want to explain how my invisible disabilities rendered me unable to get out of bed some days.
Staying home was shameful. Now it’s a public service.
I’ve had so much practice with living in limbo, waiting it out, not knowing what’s ahead. I am familiar with daydreaming about the simplest of things that once were so carelessly easy and commonplace. These are skills that can be hard to learn, so I consider myself lucky that I already have them.
I haven’t left my apartment since March 12. My partner goes downstairs to the lobby to pick up our packages, and he’s gone out to get groceries when we couldn’t get them delivered and to the pharmacy too. Deliveries are left at our front door and he wipes everything down as it comes in. Me, I don’t even touch the front door let alone go out of it. There are different levels of quarantine.
Prior to the pandemic, I was putting off seeing a neurologist because my regular doctor has been on leave, and I don’t want to see anyone else. You get attached to your doctors, especially ones like mine, who guided me through the terrifying process of working out exactly why my body stopped functioning as it should. He diagnosed me with Primary Lateral Sclerosis, a rare type of motor neuron disease. He always told me I was one of the most unusual patients he’d ever had in his 25 years of practice, having a rare presentation of a rare disease.
I was supposed to have an appointment with one of the few neurologists in the world who researches Primary Lateral Sclerosis, but then Covid-19 happened, so I am going through new signs of decline – alone. A couple of weeks into lockdown, I started experiencing bladder issues. At one stage, this would have devastated me – sent me into a spiral of shame and depression, but my ‘wheel friends’ have always been so open about how they deal with bladder issues. Other friends in the community have shared that they use pull-ups and pads. I feel ok and ready to handle it. My ‘wheel friends’ have made me realize that this is not the end of the world, not even close.
When I’m feeling scared about my declines, Bri, Geeg, and Liv have my back. Before Covid-19 took hold, Bri went to the hospital with me for my first treatment of Stelara, an immunosuppressive drug intended to treat my Crohn’s disease. We may not be together in person for support at the moment, but connecting digitally keeps me going. I cannot emphasize enough what it means to have their friendship, especially for someone like me who doesn’t fit neatly into any medical categories.
Today marks just over one month of being inside my apartment. I’m not planning to leave this month, either. I’m too scared. NYC hospitals are overloaded “care rationing,” “triage” and “deprioritization” mean that a disabled, chronically ill person like me might not get the best treatment or any treatment. Disabled people are even being pressured to sign Do Not Resuscitate orders. I’m going to stay in my apartment, spending mornings sitting in front of the window, feeling the sunshine on my skin. It’s safer that way. People keep talking about things “getting back to normal” but I don’t think that’s possible. This is irrevocably changing our world, and we cannot go back to how things were.