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.

My Book is Officially Published!

Today is a big day — my memoir, When Force Meets Fate, is officially published.

In addition to more than 70 reviews on Goodreads (4.66 stars), When Force Meets Fate has already received some solid press coverage. The Press Democrat did an excellent piece on the book, and it also received a glowing review in the Providence Journal.

I won’t say that I’ve been dreaming of this moment since I was a kid, because I probably cared more about firefighters back then, but I’ve definitely been imagining this moment for a long time. Over the course of the decade it took me to write When Force Meets Fate, there have been countless times in which I thought the book would never be published.

There was the time my laptop stopped working, and I lost all my drafts, only to miraculously recover one from an email. Then, of course, there was the eighteen month stretch when I was so sick I couldn’t speak, let alone finish writing the book.

There have been so many obstacles that could have prevented me from publishing this book, and in the end, I had to finish writing it on my phone, at times wearing tanning goggles because the screen was too bright. That should tell you how important it was for me to share my story. The thought of it has kept me going when I couldn’t speak or eat, when I very much thought death was lurking around the corner.

Little did I know, writing the book wouldn’t be the hardest part. Once I finally finished it, I had to find a publisher. It was a long and grueling process, which took up most of my free time from 2016 to 2019 (another story for another day), but I eventually found a publisher, and just as fate made me face the obstacles I wrote about in the book, it has now allowed me to share my story with the world.

Many, if not all, of the wonderful people who preordered the book have now received a copy. It’s a marvelous thing. But suddenly I’m seeing people reacting to something that, for such a long time, has been mine and mine alone. Now it’s out in the world and people are sharing their opinions of it through Goodreads reviews and Bookstagram posts.

These opinions have been overwhelmingly positive, but there have also been a few harsh criticisms. While many people have called my memoir the best book they’ve read in a long time, praising the story for its “honesty and openness,” others have said it’s not for them, calling me self-destructive and “navel-gazey.”

Although I expected this, I didn’t fully grasp how it would feel. I knew there would be both good and bad opinions of the book, but now that I’m actually seeing the opinions, I find myself trying to cope with the fact that two people can have such dramatically opposing opinions of the same book. This realization hasn’t exactly made the negative reviews any easier to read, but I have found peace in knowing that if I had changed the book to appease one set of opinions, it would have created an entirely new set of negative opinions.

Through this, I have also realized a simple truth: my book can’t mean everything to everybody, but it can mean everything to me. And now it does.

BEFORE YOU GO…

1. As I just mentioned, WHEN FORCE MEETS FATE is now available for order. If you’d like to support the book please leave it a review on Amazon and Goodreads. Also, 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

2. The audiobook is also available on all platforms, including Audible! Here is a sample of the audiobook:

3. 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.