It may be hard to remember, but six months ago no one had heard of social distancing, and the idea of the United States asking citizens to quarantine at home seemed like a laughable movie plot. Then a novel, highly-contagious virus ripped across the globe and changed everything forever. COVID-19 has affected everyone’s life to some degree, but its impact on our community has been disproportionately large. In this issue, we hear how the virus and all the disruptions that come with it have changed the lives of seven wheelchair users facing unique situations: a nurse, an active vent user, a traveler isolated in Argentina, a man struggling to find a caregiver, a mom-to-be, a quad awaiting key surgeries and an outdoor enthusiast. We’ve also compiled a selection of art from artists with disabilities, along with the latest medical information, news and resources to make this unprecedented and unsettling time more manageable.
Stories: Snapshots From Our Community
Facts: Disability-Specific Medical Info
Art: Images From Artists With Disabilities
Resources: Your Questions Answered
Lives in the Time of COVID-19
A Nurse in Waiting
Brooklyn, New York
It’s been two weeks since my job as a school nurse in lower Manhattan closed down, and I’m quarantined with my family in Brooklyn. The healthcare system here is already overwhelmed. The hospitals are putting up tents to be able to triage COVID-19 patients, and we’re seeing younger people with no prior illnesses end up on vents. It’s scary.
There are people out and about, but I’m staying in the house, updating my resume and applying for nursing jobs. I’ve never seen this many nursing job listings. I’ve already applied for 27 jobs today — those are positions that weren’t there last week. I’ll go through, website by website, and submit my application for all the relevant jobs. You would think a nurse with a firsthand knowledge of disability would be in demand, but discrimination is rampant.
I’ve had staffing agencies tell me, “We can’t place you. We don’t think anyone’s going to want you.” I had two interviews for dialysis positions last week. The first person claimed he forgot he made the appointment when he saw me, and when the second found out I was in a wheelchair, I heard him tell his assistant, “In a wheelchair? For an interview? No way. Nurses can’t be in chairs.”
It’s frustrating, but I guess it comes with the territory of being a trailblazer.
I live with my parents and two siblings, and everyone is doing all right so far. My dad and sister are considered essential employees, and my mom still works three days a week, so there’s lots of coming and going. We’ve been super vigilant: no guests and no visitors. We set up a decontamination zone right when you come into our house. We have a set of towels at the front door and everything gets sprayed down with Lysol and hung outside when possible. Everyone takes showers when they get home. It seems like a lot, but I don’t know how at risk I am personally with my spinal cord injury, and my mom and sister both have compromised lungs. We don’t want to exacerbate anything.
My brother and I have been at home alone most of the time. I’m staying sane with heavy doses of pet therapy with my Shih Tzu, Gigi, and regular exercise. Shout out to the Rollettes — I’ve been watching their exercise videos and workout stuff. My friends have been tagging me on exercise challenges, and I’ve been adapting where I can. Still, I would give anything for creme brulee from Opera, my favorite restaurant. It’s not anything over-the-top or fancy. It comes in a little ramekin, and everything about it is perfect. I would eat them all day if I could. But now the restaurant is closed, and I can’t get it at all.
On the bright side, we have more than enough toilet paper. It’s not a hoarder thing, my family is just always on the lookout for a sale, and we had loaded up on a good deal before all this started.
Editor’s Note: We checked in with Dalzell a week after she submitted her article and discovered her job applications paid off — she now works as a hospital floor nurse in the Bronx. Following is her update:
Last night I worked my seventh shift since being hired at Montefiore Hospital in the Bronx. I went from being unwanted and stuck at home to being needed on the front lines. I never would have guessed that in my first job as a floor nurse, I would be thrown into the fire like this, but I’m loving it.
I’m working on the one floor in the hospital not dedicated to COVID-19, and our main goal is to rule out the virus. We’re so short staffed that it is literally nonstop from the moment you get in the building until you leave. Typically, a nurse staffing ratio would be six to one, and last night I had 13 patients. We had 33 on my unit when I arrived and 37 when I left.
The work is incredibly gratifying, but so is earning the respect of my peers. I think they had their own trepidations about having a coworker with a disability on the floor since they’ve never worked with someone like me before. Last night, it was really cool to hear one of the nurses say they need to keep me because I work hard and help everyone out. As a pioneer, I know I’m changing perceptions, and it’s important they see that not only do I not need their help, but I can help them.
I’m learning a ton on the job. Working in the pandemic, I have to process minute to minute. I have to figure out how I’m hanging that IV bag, moving that bed and turning or repositioning that patient. I don’t have a day or an hour to think about how to get something done. I just have to do it. As someone with a disability, I’m constantly trying to be innovative, and that’s helpful when I have to figure something out and get it done with safety and infection control and everything else going on.
I go into work thinking, “Please God give me the knowledge that I need to keep everyone alive.” I don’t want to have to call a rapid, I don’t want to have to call a code. I don’t want to do those things. After the shift, I’m thankful and just like, I need to go home and sleep.
Living in a House of Cards
I am an incomplete quadriplegic. I am on a ventilator. I don’t like this pandemic.
Before the pandemic, I would’ve told you that, all things considered, I dominate this disabled life. As someone whose body utterly failed nearly two decades ago, I still managed to maintain a relatively normal existence. Sure, I required a 24/7 babysitter, but I ate at restaurants, drank at bars, gambled at casinos and traveled anywhere within driving distance. I lived for these glimpses of normalcy. My biggest complaint was that I could never truly relax, that the severity of my disability caused me to be constantly and invariably aware.
Before the pandemic, I rarely felt vulnerable. Yes, I’ve been on a vent my entire adult life, but I’ve always viewed it as just another inconvenience. I did realize my lifestyle was, and has always been, a house of cards, albeit a sturdy one. Even if it were to collapse, I knew I could probably rebuild it.
The primary reason I felt so confident in my situation was the team of caregivers I’d surrounded myself with. Everybody in my position has a primary caregiver and mine is my mother. She has been there every day for the past 18 years while also working a full-time job from home. My father worked outside the home but helped when he could, especially with the more physical tasks. I’ve also had numerous nurses and personal care attendants who are capable of taking care of almost any need I may have. These people allowed me to live about as well as a person who can’t move or breathe could live.
But that was before the pandemic.
As I write this, it’s March 27, and the world has stopped. After a brief period of jokes, dismissal and denial that COVID-19 would affect my life, shit began to get real. Don’t worry, they said. It’s only dangerous if you’re old or have underlying conditions. They said it only affects “vulnerable” populations. Well, I’m a Type 1 diabetic on top of everything else, so I’m definitely part of a vulnerable population. I had to learn more about this disease.
I reached out to my doctors and spoke to my current and former nurses, several of whom work at large prestigious hospitals around Massachusetts. I heard similar things from everyone. Their ICUs were already full. The scene at some hospitals was described as “crazy,” “wild,” and “unlike anything ever seen before.” Two pieces of advice were universal: Don’t get this virus and don’t get hospitalized for any reason. The sheer volume of patients in these hospitals would prevent someone like me from receiving adequate care.
Since those conversations, life has turned upside down. I was forced to cancel my nurses and PCAs indefinitely. My mother and father are the only humans I’ve seen for over two weeks, and they’ll likely be stuck doing my care by themselves for weeks or months. It’s not the disease itself that scares me; it’s the fact that I’m finally vulnerable. There are no backups or safe havens. There quite literally aren’t any hospitals for me to safely go to. I am at home, and that’s where I’ll stay until this is over.
My life is simpler now. The outings, social gatherings and normalcy I previously yearned for are gone. My ventilator is no longer an inconvenience, but a lifesaving device sought around the world. For now, my house of cards is still standing. But there’s a hurricane outside, and if it blows my house over, I don’t know if I’ll be able to put it back together.
Quarantined in Argentina
It’s crazy to think that a just over a month ago I was in the far reaches of Patagonia with only my brother and guanacos roaming around for company. Now, I’m in an Airbnb rental, looking out a 10-story apartment building at many confused human faces staring back at me. Argentina, where I had last been traveling in my converted van, has been in total lock down since March 20, and so here I am, quarantined in a concrete jungle [see “Baja or Bust“, July 2019].
My brother and I were taking what we thought was a short break from van/tent life, checking out the big city, when COVID-19 cases started spiking. We were trying to decide whether to stick to our planned itinerary — heading back on the road to Uruguay and then onto Brazil — or to just hang tight. The Airbnb we rented is reasonably accessible and works well for me, definitely not a given in South America, so we decide to stay here. Once they started to close borders and put up road blocks outside cities, we knew we’d made the right decision.
Still, I’ve spent zero time physically touching nature in the last month, which is a new personal record I wasn’t intending to surpass. The apartment has no plants, no artwork, no yard, nothing but the bare essentials. Fortunately, I have a balcony that gets direct sunlight until approximately 2:34 p.m., and a view over a pool with a few trees. Fresh air and sunshine are important for my sanity, so I’m thankful for that.
Is it Tuesday, or is it Wednesday? I can’t really keep track these days. As of late, everything seems to smoosh together. Wake up, check Instagram, make breakfast and do a little workout. Netflix, nap and repeat. It’s like an episode of Groundhog Day, nothing seems to change other than the length of my hair and size of my belly.
Surprisingly though, I’m rarely bored. I’m not mad, upset or confused. There’s nobody to blame and nothing to change, so I’m just making the best of the situation and living day-by-day — a useful skill that most quadriplegics are forced to learn.
I’ve stared a daily workout using resistance bands and strapping Gatorade bottles to my hands to imitate weights. Best part is, the weights get lighter as I hydrate! I’m thinking on Fridays I’ll switch to beer. I’ve begun reading and writing more and still somehow managed to procrastinate doing my taxes. I’ve enjoyed listening to neighbors play music on their balconies for everyone to hear and the nightly 9 p.m. clap for all the healthcare workers in the city. It’s a nice community here in Buenos Aires.
I’m challenging myself to cook more, since my brother does all the shopping. And because the selection of groceries is slim, improvisation is key. Garlic and onions are a staple and provide a welcome aroma to fill this otherwise bleak space. When I complement the meal with an Argentinian vino, being stuck in this apartment doesn’t feel that bad anymore. Good food takes time to prepare, something I have plenty of these days.
I briefly skim the news about the United States and have realized how fortunate it is that Argentina took pro-active measures dealing with this pandemic rather than re-active. Being that all borders and airlines are locked down, I couldn’t leave here if I wanted to. But I feel like I’m as good off, or better, here than I would be back in the states.
This whole situation isn’t ideal, but if boredom and inconvenience are all I have to deal with, I’m very fortunate. I have a roof over my head, a hot shower and good enough Wi-Fi to connect with the outside world. Zoom and FaceTime have been wonderful technological coping tools in times like these.
Sheltering in place from COVID-19 in another country is an interesting situation to be in. I feel horrible for all those suffering, but I try my best not to dwell on something I can’t change and instead only focus on what I can. I know that life as we knew it may never be the same after this. I felt this way when I first had my accident. But similarly to how I’ve adapted, rebooted and remodeled, our world will too.
Stay healthy, positive and optimistic. I’ll see you on the other side.
An Ugly State of Mind
As an Iowa resident who depends on Medicaid, I’ve been living in a caregiving nightmare for a long time, but COVID-19 has amplified the insanity. I live alone, and for over 10 years, I’ve relied on having caregivers come four times a day. I have a hard enough time getting and keeping the few hours a day of service I get. Since the state privatized Medicaid in 2016, the bureaucracy has complicated every step of the hiring process, from certification to payroll and beyond.
The result is that something that should be simple — hiring a qualified caregiver — can take six weeks to four months in good times. I had one caregiver give me a generous two-and-a-half-month notice and, despite aggressively looking to fill her spot, I was unable to get a new person certified by her end date. I’m looking to hire a new caregiver now who is better for my mental health. I know the COVID-19 situation is going to make that significantly worse.
I spent 19 days in the hospital in February before all the COVID-19 stuff hit, and my stay just reminded me how frustrating and depressing it can be to deal with the medical establishment.
It’s tough enough being a quad in the winter and early spring because of cold temperatures and lack of access. Then you take what was already an isolating situation and all of a sudden you can’t have church events or go to restaurants or movies or any social outlets. The result is that the depression and anxiety I deal with on a regular basis are even worse. I’m living in an ugly state of mind.
Thanks to my depression and anxiety, I haven’t been productive for the last two weeks. I’m trying to catch up on paperwork and projects from when I was in the hospital, but everything is taking me two or three times as long. I’m just now starting to get caught up on stuff, even though I’ve been home a little over a month now. Normally I’m a pretty strong reader, but I’ve just been zoning out in front of the TV because my attention span hasn’t been there.
Pregnant and Quarantined
My go bag is ready by the front door, and at 30 weeks pregnant with a high possibility of pre-term birth before 40 weeks full gestation, my husband and I are ready to drop everything and head to the hospital to welcome our twin girls.
It’s hard to believe that it was just last May when we set up a consultation with a high-risk pregnancy specialist to find out my options as a quad. We decided to go for it and were shocked when we found out I was pregnant with twins. No in vitro, no history of twins, no genetic disposition … it was totally unexpected. I was like, “OK. So much for all my meticulous planning. This is going to be a little different than I anticipated.”
We learned about all the possible complications and obstacles we might face because of my spinal cord injury, but we never could have expected we would be spending the final weeks of my pregnancy on quarantine in our rural Virginia home. It’s gone from the novelty of being a quadriplegic having twins, to being a quadriplegic having twins during a pandemic.
Despite all that, we’re doing pretty well. I’ve got a great team of doctors, and I love the specialist I’m working with. We’ve been going to see them once a month, and we will be in touch every two weeks during the third trimester. I totally trust our doctors and the hospital facility is wonderful, but thinking about the complications the virus presents can be scary.
I’ve been in complete isolation for the past two and half weeks, but now that I have to go to pre-natal appointments more frequently, the risk of exposure increases. I asked what would happen if I get sick and the plan is that I would be isolated, and if I give birth while sick, I’d be separated from the babies immediately.
On top of that, the rule at the hospital for now is only one visitor during and after labor, but I’ve seen other cities where they are removing even that privilege because of COVID-19 concerns. I’m going to talk to my doctor, because, at a minimum, I need my husband to be there to help me transfer and do my daily care.
After 30 weeks of battling SCI-related low blood pressure and pregnancy-related anemia, I look like a pale corpse with a big belly. I can’t transfer myself anymore, and because of fainting spells, I can’t safely use my ceiling lift. I’ve had two iron infusions because my red blood cell count was rock-bottom, and I spend a lot of my time on bedrest trying not to blackout.
I try to keep up with my job working for Spinergy, but it is really hard because my blood pressure is not cooperating. There are some days where I start blacking out every 10 minutes. All I can do is stop, sit there, breathe, lean forward and wait until it passes. When it doesn’t pass, I have to get on the couch and lie down. And, as a quad, it’s really hard to do my work in that position. I thought I knew what fatigue was, but oh no, this is a whole other level.
I’ve had a lot of other women with spinal cord injuries ask how I’m doing or what my thoughts are on having a baby, and I try to keep it all in perspective. All these things bother me from day-to-day, but as quads, we’re so used to dealing with challenges. The knowledge that, unlike most spinal cord injury-related obstacles, what I’m going through with the pregnancy is just a temporary challenge, makes me feel OK.
Knowing the issues I’m having are not going to hurt the babies, and they’re not really going to hurt me, helps put my mind at ease. Yeah, physically, it’s not fun, but it’s not going to kill me. Emotionally, however, I’m feeling amazed at my body for growing two babies despite paralysis, and it is both an empowering and heartwarming experience.
Follow Daniela’s pregnancy and parenting journey at daniizzie.com.
A Future on Hold
2020 was supposed to be the year I accomplished a lot to make my life better. Instead, it has turned out to be a year I’ve had to place my needs on hold.
At the start of the year, everything was in place: a new insurance plan, new physicians, new mail order pharmacy, and I was already scheduled for meetings with surgeons to plan out surgeries that should allow me to regain some lost function and hopefully alleviate some chronic pain.
My best-laid plans have completely fallen apart, thanks to this nasty novel coronavirus that has killed thousands worldwide. Rather than lament what has happened, I know that I need to be extremely grateful that I am still here and living independently.
This virus has necessitated a few lifestyle changes. I have not left my house for the past month, nor do I want to. Socializing face to face with friends and neighbors is a thing of the past. The only other people going in and out include my caregiver and others who have a need to be here, like home health nurses who visit periodically. My caregiver is now sleeping here at night in order to provide assistance related to the high blood pressure I’d hoped to correct with the surgery I had planned. That has increased my out-of-pocket home healthcare costs significantly, and those are not reimbursed by anyone.
I’m over 60 and I’m quadriplegic, so I know the virus could have a more significant impact on me than it would on younger, healthier individuals. I live near the first reported case in the United States, in one of the hardest hit areas, so I pay careful attention to what is happening and try to follow the recommendations of health care professionals with first-hand knowledge. Seemingly simple things, like buying food and replenishing medical supplies, are no longer easy.
When it comes to stocking food, I was ahead of the crowd. I had already been purchasing groceries online and having them delivered. That is easier said than done today. Everyone seems to be using those online services, and the businesses are so oversubscribed that it is impossible to place an order. Hoarding is rampant, but I thought I had plenty of cleaning supplies and hand sanitizer prior to the outbreak. Now that this is going to last for months, I am not so sure. Thankfully, I have nearby family members who watch the store shelves when they do their own shopping, so I have not run out yet.
Suddenly I find myself in competition with those who are treating the victims of the virus, as we use the same gloves, masks and some other supplies. When it comes time to reorder, I imagine those shortages will impact my ability to get them in a timely manner, if at all.
All across my state, medical appointments are being scheduled and subsequently canceled as the virus shows no signs of abating. Doctors who insisted on face-to-face office visits in the past are now reluctantly agreeing to telephone conferences.
The situation is extremely frustrating, as I know that my health is unlikely to improve and may even deteriorate further as this year drags on. There is no projected date when surgeries might begin again. With hospitals here filled with virus victims, that date might be well into next year. At least I am alive. I intend to stay that way. Hopefully the rest of my peers will do the same.
The COVID-19 Campout
Salt Lake City, Utah
I was paying attention to COVID-19 before the United States was hit by the pandemic, so I was prepared for the quarantines. Some of my favorite hobbies are cycling, hiking and camping, and I knew I would need to be creative if I wanted to fulfill those passions while isolated. I may not have a trail to hike or bike, but I have a backyard and plenty of space to set up a base camp. The terrain may not be as rugged as Joshua Tree, Yellowstone or Arches National Parks, but I’m using my imagination.
My work life has come to a screeching halt. I moved to Salt Lake City from Oakland, California, at the beginning of the year to follow my dreams of working in the outdoor industry. I was in the beginning stages of interviewing to become a recreational guide at National Ability Center and I was stoked to land a job at REI. Unfortunately, REI was one of the first companies to temporarily close its doors. I haven’t been to work since March 11. I’m still getting paid but expect that to stop soon and I’m ready for the possibility of being laid off because outdoor recreation isn’t an essential industry.
So, right now all I have is a backyard, camping gear and a lot of spare time. The COVID Campout continues. I’m using this time to freshen up my survival skills, test out new camp gear and, of course, keep my mental health in order. I won’t be able to do much hiking but there’s way more to camping than exploring the wilderness around you.
Food and nutrition are just as important as exploring when you’re camping. I’ve been using camp stoves to cook dinner and make coffee. Because Salt Lake City has had a few snowstorms during my campout, I’ve even melted snow for drinking water. Camp stoves aren’t the only cooking option while camping. I used some stones around my yard to build a fire pit. I even collected twigs, sticks and brush to use as fuel. I find a lot of joy from the sound of crackling wood and sizzling steaks. It wouldn’t be a campout without s’mores, so you better believe I’ve roasted a few marshmallows too.
Early into my backyard campout, Utah was hit with a 5.7 earthquake. Somehow, I slept through the rattling and shaking. I lived in California most of my life, so earthquakes are a normal part of life for me. Unfortunately, Salt Lake City’s infrastructure wasn’t as prepared as I am. Downtown streets and sidewalks were covered with crushed brick and broken glass. Having a natural disaster during a virus pandemic is what I call bad timing.
This has me worried about the upcoming hurricane season. Our government had six weeks to prep for COVID-19 and failed. Hurricane season starts in June and lasts five months. Let’s hope our government is prepping for the next disaster that hits while we’re still experiencing this disaster.
I’m a few weeks into camping and have had a blast being creative in my backyard. I’m not sure what my future holds. I do know I have a tent, sleeping bag and campfire to keep me occupied for the time being. You don’t need a back yard or a tent to camp. All you need are a few blankets draped over the couch or kitchen chairs. Turn on Netflix fireplace crackle and microwave yourself a s’more. It doesn’t look like COVID-19 has plans to pack up camp anytime soon. So why not set up your own COVID-19 camp to pass the time?
Follow Matt’s COVID Campout at MattTilford.com and on YouTube at /MrMatthewTilford and on social media with #covid19campout.