When a Relationship Goes Viral

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.

Similar Illnesses

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. 

Reversing Roles

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. 

A Bittersweet Reality

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 . . .

1. Please support this blog by ordering a copy of my memoir, WHEN FORCE MEETS FATE. And if you’d like to support the book, please leave it a review on Amazon. The book is available from:

US: AmazonAppleTargetBarnes and NobleGoogle PlayBooksAMillionBook Depository(ships worldwide for free!), IndieboundBookShop.

2. The audiobook is also available on all platforms, including Audible!

3. You can also support my blog by donating directly.

I Wrote 90,000 Words on my Smartphone. And I Wasn’t Texting.

I wrote a book on my smartphone. It took me the better part of a decade, but I was able to type out all 90,000 words of my memoir, When Force Meets Fate, on a tiny 4.7 inch iPhone screen. It wasn’t my preference, or even a shameless quest to stand out in an industry that publishes hundreds of thousands of books each year. No. I wrote a book on my phone because I’m disabled, and it was my only option.

My disability began as a viral illness, which, over several years, developed into myalgic encephalomyelitis — an energy-leeching, multi-system disease that Dr. Anthony Fauci has compared to “long haul” COVID

For the first few years, I was constantly fatigued and plagued by weakness and nausea, but I could still take care of myself and work from home as an editorial assistant. 

It was around this time that I started working on When Force Meets Fate, which focused on my battle with chronic illness and disability. But three years after I began writing, my condition worsened. Suddenly I couldn’t walk or eat on my own. I was too weak to speak and couldn’t use my phone. Finishing my book became an even more difficult task, if not an impossible one.

For months, I had to use hand signals to communicate, and my only nourishment came from liquid meals, which I had to drink through a straw.

Eventually, after lots of steroids and antiviral medications, my health began to improve. I could speak softly and eat solid food again. And while I wanted to finish my book, I still wasn’t quite up to it. So I started writing essays. 

In 2017, I wrote an opinion piece for the Los Angeles Times titled, ”Surviving by Smartphone,” describing how I needed my phone to communicate. What I didn’t mention was how I also needed it to write that very article. 

A year later, I wrote an essay called, ”Love Means Never Having to Say . . . Anything,” also on my phone. It was published by The New York Times for its “Modern Love” column. 

But these were relatively short pieces (both under 2,000 words). If I wanted to finish my book, I would have to replicate them 50 times. I was determined to do just that. I didn’t think about how daunting it was, I just put my thumbs on the screen and got to typing. 

My phone was too bright, worsening my neurological symptoms, so I wore sunglasses to shield my eyes, sometimes even strapping on welding or tanning goggles for added protection. There I was, lying in a small hospital bed, finishing my book with a pair of hot pink tanning goggles on.

Typing tens of thousands of words on tiny digital keys was extremely difficult, but the hardest part was editing — dissecting grammar and sentence structure with big, clumsy thumbs and dark goggles over my eyes. I finally finished the manuscript, and moved on to finding a literary agent who could look for a publisher. I queried more than 100 agents, many of whom rejected my book proposal flat out.

I didn’t know what I was doing wrong. By this time, I had written several more essays and even appeared on Netflix, giving me a substantial platform with more than 50,000 social media followers. It seemed as though I had everything one would need to get a book deal. But, for some reason, it just wasn’t meant to be. 

I briefly considered self-publishing, but I wanted a publisher who could provide my memoir with a broader audience than I could give it on my own. I decided to use Inkshares, a crowdfunding publisher, who agreed to publish my memoir after I sold more than 750 pre-orders. 

That was more than a year ago, and now, after approving the book’s interior and cover design, even proofing the audiobook, all on my phone, my memoir is being read by people all over the world. 

Some may think writing a book on a phone is impressive, others may think it’s impossible, but when you’re disabled and all you want is to tell your story, it doesn’t matter how you do it. For those of us with disabilities, sometimes the hard way, or even the seemingly impossible way, is the only way.

BEFORE YOU GO . . .

1. Please support this blog by ordering a copy of my memoir, WHEN FORCE MEETS FATE. And if you’d like to support the book, please leave it a review on Amazon. The book is available from:

US: AmazonAppleTargetBarnes and NobleGoogle PlayBooksAMillionBook Depository(ships worldwide for free!), IndieboundBookShop.

2. The audiobook is also available on all platforms, including Audible!

3. You can also support my blog by donating directly.

Almost Walking

It’s been a rough year. I think we can all agree on that, so I thought I’d share some good news—my health has been improving lately. The other day I got out of bed and stood up three times in the span of a few hours, the most I’ve done in the last six years.

I’ve been measuring how much body weight I put on my legs using a bathroom scale. I step on the scale, and because it’s the first time I’ve been well enough to do so in years, I’m not entirely sure how much I weigh. But I am sure how much weight I can put on my legs. At first I could only put ten or twenty pounds on the scale. Now I can push off of my bed and put what I believe is all of my body weight on it. The fact that I’m able to put any weight on it is progress for me, but using all of my body weight is something I haven’t done since I became bedridden in 2015.

It has been quite a journey since then. For a long time I was too sick to speak or eat; I couldn’t even sit-up in bed or look at my phone. Now I’m eating and speaking, and hopefully soon I’ll try to walk.

It blows my mind that I’m so close to walking again. When I stand up and put my feet on the floor, the cold surface tingling my toes, it’s exciting (and exhausting) to know that all I have to do is take a step and I’ll be walking. But taking the first step is always the hardest, and before I do, I need to make sure my legs are strong enough and my balance is steady.

The tricky part about this phase of my recovery is that I can’t afford to fall. Normally I’d be willing to take the risk, and potentially fall on my face, but in the midst of a deadly pandemic, I just can’t risk getting the coronavirus because I need someone (or multiple people) to help me get up.

So I’m being very careful, going slow and safe, but I’m also staying consistent with my rehab. I’m not going to use COVID as an excuse to not make progress. I am still working hard to get better every day. I’m doing light stretches and exercises with my feet and legs before I stand up multiple times a day.

It feels good to make this kind of progress, reminding me of what it used to feel like to work out with heavy dumbbells, back when I measured my progress by how many pounds I could take off the scale. Now I’m measuring my progress by how much weight I can put on it.

BEFORE YOU GO… 

1. Thanks for reading! If you haven’t already, please follow my blog.

2. For those who haven’t heard, my memoir, WHEN FORCE MEETS FATE, is going to be published next month.

You can read sample chapters, leave an early review on Goodreads (those really help!), and preorder it through Amazon and other online retailers, in both print and ebook. The audiobook is FINISHED! We’re just waiting for Audible and other retailers to approve it. I will keep you posted on that. For now, here is a sample of the audiobook:

You can also support the book by donating to help pay for the audiobook and publicist, expenses that will have to come out of my own pocket.

Here’s a list of places to order the book (by country):

US: Amazon, Apple, Target, Barnes and Noble, Google Play, BooksAMillion, Book Depository (ships worldwide for free!), Indiebound, BookShop. Canada: Amazon, Kobo, Chapters/Indigo UK: Amazon Australia: Booktopia Mexico: Amazon Germany: Amazon Norway/Sweden: Book Depository, Adlibris