A stadium filled with fans. A restaurant packed with people. A store swarmed by shoppers. Until recently, these things were mostly nonexistent during the pandemic. But now that people are getting vaccinated, places are opening up and people are venturing out in public again. Except not everyone.
I’ve been housebound (often bed bound) for the last decade. That’s ten years of missing out on baseball games, meals at restaurants, and shopping at stores. Then the pandemic hit and, for a brief moment, everyone felt some degree of that same isolation. Suddenly, people had to rely on remote communication, using their phones and other devices instead of meeting in person. They had to eat all their meals at home, and go months without seeing friends and loved ones. For them, it was a big adjustment—a new, more difficult way of life. For me, and disabled people like me, it was more of the same. It did, however, make me feel less alone knowing that literally billions of people around the world were experiencing a similar existence to the one I had been living for the last decade.
I didn’t enjoy seeing these people suffer, but as they say, misery enjoys company. And, I must admit, my misery did enjoy their company. Call it selfish or solidarity, it was comforting to have that kind of a shared experience.
But now that things are returning to normal (that’s a general sense of normal, not my sense of normal), I’m left with an even bigger void of knowing that all the people who were united with me are now uniting in a different way, leaving my way of life behind. They are going out in public again, enjoying each other’s company, while I’m still housebound, still fearful of getting a secondary illness, which, paired with my existing condition, could send my fragile health into a tailspin.
While I’m still wearing a mask, taking the necessary precautions to avoid getting such an illness, many people are returning to life as they knew it before the pandemic. After all, some people find that the easiest way to cope with a difficult problem is to pretend it doesn’t exist. But such thinking doesn’t usually end well (just look at Typhoid Mary).
In other words, there is a direct correlation between people returning to their normal lives and an uptick in COVID cases in the last several weeks. There are other factors, of course, like large numbers of unvaccinated people and the Delta variant being more contagious, but we could keep the cases low if everyone took the necessary precautions.
I say this not so my misery enjoys company a little longer, but as a logical solution to a reoccurring problem—wearing masks prevents infections. And also, my hope is that the number of cases will some day (hopefully soon) become low enough that, if my health continues to improve, as it has in the last several months, I will feel safe going out in public for the first time in a decade. And it’s not just me, there are millions of sick and disabled people who are holed up in their homes right now, still waiting out the pandemic, hoping the infection rate decreases enough so that their compromised immune systems won’t be as much at risk. So, please, keep that mask on a little longer.
When I became bedridden six years ago, among the many challenges I suddenly faced was bathing in bed. Getting (and staying) clean when you can’t get out of bed is incredibly difficult. I had to clean food and blood and urine off my body, and I had to do it without using running water.
At first my caregivers used washcloths, buckets of water, and spray bottles to help me maintain good hygiene. Because I was so limited in bathing options, I found myself becoming obsessed with getting clean. When I was healthy and could readily get up and take a shower, I wasn’t nearly as focused on it. I’d take quick showers every day (or sometimes skip a day), but when I was bedridden, I felt the need to get myself as clean as possible precisely because it was impossible. It would take me several hours to bathe, and even after all the time and effort, I would still feel unclean.
I’d start by soaping the dirtiest parts of my body, or what some of my caregivers called pits, tits, and bits. Then I would use a wet washcloth to wipe the soap off as my caregiver sprayed me with a spray bottle. Because I was on a mattress, I had to lie on absorbent pads, which often weren’t absorbent enough, letting the water seep into the mattress.
It was a long, messy, unpleasant process, and it took so long that I usually had to take breaks, sometimes waiting an hour or more between washing different parts of my body. But eventually my health started to improve and I graduated to using an inflatable bathtub, which was placed on top of my mattress. This was a game changer.
First, I lay on the flattened tub, then my caregiver inflated it around me. There was an inflatable pillow and a wand that connected from the bathroom sink, which was the first running water I had used in several years. When I was finished bathing, the water that filled the tub was then drained through a hose attached to a hole in the bottom of the tub. It was a genius invention, and improved my hygiene (and overall quality of life) for a long time.
Then, just in the last month or two, something even more life-changing happened. I began to walk again, which gave me the ability to get into a real bathtub and take an actual shower. It’s still a long, exhausting process, but it’s quicker and more efficient than my other bathing routines.
Now I start by standing up beside my bed, shuffling over to my wheelchair a few feet away. Then I navigate the hallway from my room to the bathroom. The bathroom doorway is just barely wider than my wheelchair, so I usually bump along the doorframe, leaving noticeable scrape marks. But I guess sometimes you just gotta leave scrape marks to get clean.
Once I’m in the bathroom, I stop my wheelchair and transfer into a shower chair, its legs suctioned to the bottom of the bathtub. On the shower chair is a memory foam seat cushion wrapped in plastic and the inflatable pillow. These modifications have come after a lot of trial and error attempting to make sitting on the hard plastic shower chair more comfortable.
Finally, once I’m settled on the chair, I turn the water on and savor the wonder of a warm shower.
Throughout my recovery, I’ve had a lot of renewed experiences like this — from leaving my room for the first time in two years to walking for the first time in six. I’m not going to say that taking a shower was more significant than those milestones, but collectively (and individually), these moments have made a significant impact on my life. They have shown how far I’ve come, how the little things in life can hold the most significance, and what’s possible when you don’t give up, when you keep going and keep fighting for better days.
The last time I saw Shannon, she couldn’t hear my voice. My case of myalgic encephalomyelitis — a multisystem, post-viral illness that Dr. Anthony Fauci has compared to “long haul” COVID-19 — made it impossible for me to speak audibly as I struggled to tell Shannon that I loved her.
I wrote about the experience in a 2018 Modern Love essay called “Love Means Never Having to Say . . . Anything.” Since then, we haven’t been able to see each other because Shannon lives in Ottawa, 2,000 miles from my home in California, and both of our illnesses feature viral infections, which, along with the coronavirus pandemic, have made traveling exceedingly difficult.
My illness started almost a decade before I met Shannon. I contracted a severe case of Epstein-Barr virus, which causes mononucleosis. Like many viruses, it usually becomes latent once a person develops enough antibodies to fight off the infection. My infection either never became latent, or it did only briefly, then reactivated, thrusting my immune system into a prolonged viral battle that left me unable to walk, plagued by a myriad of severe viral symptoms that have yet to go away.
My doctor, a specialist in myalgic encephalomyelitis, told me it’s unlikely that I’m contagious. Although it’s difficult to know for sure because people who have been infected with a virus can shed it even after the initial infection. This means I could have spread the virus unknowingly. It’s a terrifying thought that fills me with a deep sense of guilt and helplessness, and feels all-too relevant in the midst of the coronavirus pandemic.
Epstein-Barr is not nearly as contagious or lethal as the coronavirus, but the thought of infecting someone, especially someone I love, with any kind of illness is enough to make me keep a safe distance and take every imaginable precaution to avoid transmission.
Keeping a Safe Distance
This was particularly concerning in the early stages of my illness when I was still well enough to go on dates. I would swipe my way through dating apps and occasionally gather enough strength to meet someone at a local café.
Given the possibility of spreading the virus on a date, I made sure not to share food or drinks, and if I had to sneeze or cough, I left the room. I never kissed anyone. The people I went on dates with looked at me like I was a germaphobe, overreacting at the slightest hint of contamination. I didn’t blame them. This was, after all, before COVID-19 changed how cautious people are about pathogens. But I wasn’t taking any chances, I didn’t want to risk getting anyone sick.
It wasn’t just funny looks that I was receiving from my dates though. Disappointment began to show on their faces. They were reacting to my body language. The distance I kept from them made me seem aloof, even uninterested at times, which was only worsened by the fact that I appeared healthier than I was. After all, there I was walking and talking like a healthy person, how sick could I have been?
Not even I knew how truly sick I was, or how much worse my condition would soon become. But I did know that I missed affection. I wanted to touch and be touched. I wanted to show my dates that I liked them, a simple act that proved nearly impossible while keeping a safe distance.
How was I supposed to get to know someone, and decide whether I wanted a relationship with them, if I couldn’t hug them or even hold their hand? Was I supposed to forgo all intimacy and deprive myself, and them, of even the innocuous act of tasting food on each other’s plates or taking a sip from the other person’s wine glass? Many of these misadventures are detailed in my memoir, When Force Meets Fate, which I wrote on my smartphone while battling my illness.
Well into the third year of the illness, after many attempts at sterile romance, I finally broke down and kissed someone. We had been on several dates, and I figured that if I were truly contagious, I would have already given her the virus, however inadvertently, by speaking or breathing too closely. Thankfully I was right — I didn’t give her the virus. But, as fate would have it, soon I became too sick to continue our courtship and the relationship fizzled.
Eventually I lost my ability to walk and was too weak to feed myself or even speak audibly. Months went by and, after antiviral medications and IV treatments, I slowly regained some of my strength. I could speak and eat again, but was confined to bed, still unable to walk. That’s when I started chatting online with Shannon.
Shannon was already exposed to Epstein-Barr when we met, so we thought there was little, if any, risk of making each other sicker. Because our illnesses had similar origins — and we shared many of the same symptoms: nausea, pain, weakness, and orthostatic intolerance — we assumed it was safe to have close contact.
What we didn’t realize was that I could have given her a virus other than Epstein-Barr. Since I last saw her, I’ve tested positive for other viruses, including cytomegalovirus and parvovirus, both of which, like Epstein-Barr, become latent by the time most people enter adulthood. But for some reason, they too still show up acutely in my blood work.
The worst part is that Shannon hasn’t been able to get the same viral testing in Canada that I’ve had in the US, leaving us without answers, wondering whether I transmitted a virus to her.
It’s a thought that has haunted my mind ever since she visited me in California. I so vividly remember her waking me up before she left, crawling into bed, and wrapping her body around mine, our arms tangled up in my IV tubing. I kissed Shannon one last time before she flew back to Canada. But little did we know something as innocuous as a goodbye kiss could have catapulted an invisible illness between us, infecting her and sending her health into a tailspin.
Almost immediately after returning home, Shannon started feeling worse. At first it was subtle, she had trouble going to the grocery store and driving across town. But soon she became too weak to take care of herself and had to move in with her parents. Then she couldn’t walk upstairs to take a shower and had to resort to giving herself sponge baths while lying on a couch in her parents’ living room.
She also developed several new symptoms that I’ve experienced with my illness, notably a strawberry-like rash on her tongue.
I realize that she could have just as easily caught a virus from the plane full of people not wearing masks on her flight home from California as she could have from kissing me goodbye. But even then, I’d still feel responsible — the only reason she got on a plane in the first place was to see me.
The fact remains that while the physical distance between us hasn’t changed, our illnesses have.
While Shannon’s condition has continued to decline, mine has improved. After years of being unable to say anything and having to type on my smartphone to communicate, I can now speak audibly, though not loudly. I must maintain a strict regimen of antiviral medications, but I no longer need daily IV infusions, and recently I’ve started walking again — feeling the cold floor under my feet, the blood rushing to my legs.
Suddenly I’m the healthier one in the relationship. I’m the one who can speak audibly while Shannon struggles to get her words out.
Sometimes I find myself trying to will her to not be so sick. I ask if she’s feeling better, as if it’s within her control, as if, somehow, it’s just a matter of determination. The ironic thing is, through my own health battles, I know this philosophy to be untrue and incredibly unfair. Even so, I get desperate and hope that through sheer will she’ll feel better, that just as her health mysteriously failed, it will improve.
At times I bombard Shannon with medical advice — treatments to try, studies to read, doctors to see. She’s often reluctant to use her limited energy to pursue new medical options without a guarantee that they’ll work. I don’t blame her. But I still feel the need to do something — maybe if I keep offering solutions, one of them will work.
I want to make Shannon better. I want to move mountains, stop bullets, and jump in front of cars for her. I want to fix her. The problem is: She’s not broken. She’s sick. And I’m not a doctor. I can’t heal her. The only thing I can do is ask how she’s feeling a dozen times a day, and try not to overwhelm her with unsolicited medical advice.
The bittersweet reality is that, through this weird twist of fate, an almost cruel reversal of roles in our relationship, we now know what the other person is like under healthier circumstances. My mind is still filled with memories of Shannon walking around, posing for photos in front of ancient redwood trees and colorful Victorian mansions during her trip to California. I can still hear her speaking loudly, laughing often. But now those are just memories, experiences that we hope will be renewed once her health recovers.
In the meantime, we’re trying to make new memories, however virtually, and Shannon is seeing a side of me that she’s never experienced before. She can hear my voice. She can hear every corny joke I tell, every witty reply I make, every time I mumble to myself after making a typo. For the first time, she can hear me ask questions and speak my mind.
I never thought Shannon would experience these things. I never thought she’d hear my voice. Nor did I think she’d lose hers.
The other night I called Shannon on FaceTime and waited for her image to appear. But when she answered, the screen was black, the darkness of the room and her sensitivity to light captured on my phone.
“How are you feeling?” I asked.
She took a breath and whispered something inaudible, prompting me to perform the eerily familiar ritual of asking her what so many people used to ask me when I couldn’t speak. “What did you say?”
I quickly turned the volume all the way up and pressed my ear to the speaker.
“I’m okay,” she whispered.
But she’s not okay.
Most days Shannon can’t even sit up, and she has to be carried to the bathroom. She’s too sick to have more than a few sips of a smoothie for each meal, and she gets most of her fluids from an IV drip.
On our FaceTime call, I could see the IV in her arm with thick cloth bandages wrapped around it.
“You’re a mummy,” I told her, a lighthearted yet poignant reminder of how much sicker she has become.
A Small Ray of Hope
The IV in her arm is helping though. She’s been getting daily infusions that have allowed her to regain some strength. After several months of infusions, she has started walking again, albeit only for short trips to the kitchen to get a glass of water.
It’s a small ray of hope cast over a dark situation that has flooded me with grief. I never thought I’d see someone I love experience the viral hell that I’ve been through. And I still don’t know if it’s my fault. I don’t know if I gave her a virus that she had never been exposed to, or she caught something on her flight home, or perhaps we’ve had identical illnesses this whole time and her symptoms were just slower to develop. Whatever made Shannon’s condition worse, it won’t change our reality.
For now, Shannon and I are forced to do what so many people must do during the coronavirus pandemic: hope for the best but experience the worst. We have no option other than to maintain the distance between us and hope things get better soon.
“It’s not supposed to be like this,” I told Shannon over FaceTime. “I’m supposed to be sicker than you.”
She shook her head, the dark pixelated shadows of her face slowly drifting around the screen.
“But you’re doing so well,” she whispered. “You used to have to type to me. You couldn’t talk at all.”
“I know,” I replied. “But I hate that it’s so difficult for you to talk now.”
“It’s okay,” she said. ”I don’t need to talk.”
Shannon was right. In that moment, she reminded me that if our love can transcend words and bad health, it can transcend anything.
A decade after first getting sick and more than three years after meeting Shannon, I still don’t know if I’m contagious. But a new doctor, another specialist in myalgic encephalomyelitis, has reminded me of just how tricky the illness can be.
Like the first specialist, he told me that some viruses can be sporadically contagious for long periods of time, reactivating long after the initial infection passes and they become latent. This means that someone could be a carrier for a virus and spread it unknowingly, at any time. It’s a terrifying thought, one that feels all-too real in the midst of the current pandemic — viruses are sneaky and extremely contagious.
BEFORE YOU GO . . .
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