The audio starts w Pedro explaining why he chose this essay to read, then, after about a minute, the story begins. Prepare yourself. (I cried. Probably, you will too. And by the way: it is a true story.)
A relationship between a young man and woman with similar illnesses presents unusual challenges. For starters, he can’t speak. (Transcription after break.)
After dating Shannon for several months, I needed to say something to her, but I couldn’t. It’s not that I was nervous or unsure of the phrasing. It’s that I couldn’t speak. My lungs and larynx couldn’t create the air pressure and vibrations needed to say the words floating around my mind.
This is our reality. I can’t talk to Shannon about anything — not the weather or her day or how beautiful she is. Worst of all, I can’t tell her that I love her.
This was never a problem in my previous relationships with women I thought I loved or perhaps didn’t love at all. These women knew my voice; they heard it every day. But they never knew what I was actually thinking.
They never knew how miserable my body felt because, back then, I was able to function at a relatively normal level and hide my illness well enough to seem healthy. I could go on dates, talk on the phone and even drive to my girlfriend’s house to spend the night.
But over time my condition worsened. Lyme disease had exacerbated my existing case of myalgic encephalomyelitis, an inflammatory multisystem disease that can leave patients unable to speak or eat for years at a time.
I’m now 29 and have been sick for eight years, the last three of which I have spent bedridden, mostly speechless and unable to eat solid food. I used to be a bodybuilder who worked out for hours every day, and I was blindsided by the rapid deterioration of my health. I couldn’t care for myself. I had to delay love and many other things while I waited for my health to stabilize.
That’s when Shannon came into my life.
She lives in Ottawa, about 2,000 miles from my house in California. We met online, which is common, but otherwise our relationship has no precedent or guide. We are two people very much in love but also very sick.
Shannon has the same condition I do. She has been sick longer, since adolescence, but thankfully has never lost her ability to speak. Instead, she struggles with unrelenting nausea and has trouble digesting food. She is often malnourished and her weight drops below 100 pounds — too thin for someone 5 foot 5 inches tall.
We both have low blood volume, which makes it difficult for her to walk without fainting and impossible for me to sit up in bed without intense pain and weakness.
Since I am bedridden, the only way we can be together is for her to travel across the continent to see me. But even with her willingness to jeopardize her health by traveling so far, we are often away from each other for months at a time.
When we are together, we spend weeks in bed, mostly holding each other, our bodies aligned like two pieces of a broken plate glued back together. Because I can’t speak, we often resort to communicating by text messages while cuddling in bed.
It’s like a monthlong sleepover and feels surreal, being stuck in a situation so miserable that it could make your skin crawl, but finding comfort knowing that your soul mate is next to you going through something similar.
But our experiences differ. Shannon can briefly get up to use the toilet, bathe and, on a good day, make herself a meal. I, on the other hand, have to do everything in bed — brush my teeth, bathe and use the “bathroom” — a plastic bag for bowel movements and, for urinating, a dubious-looking plastic container attached to a tube feeding into a bucket on the floor. These are not sexy things but are part of life — my life and ours together.
I was embarrassed at first to ask Shannon to avert her eyes and try not to think of me urinating inches from where we had been kissing just seconds earlier. But I have since come to realize that it’s all part of sharing our lives. It may be far from the bedroom romps we each had experienced before getting sick, but knowing that nothing about my bedridden life makes Shannon uncomfortable endears me to her.
In contrast, I have had relationships with women who became upset at the first sign of anything inconvenient — one girlfriend who threatened to break up with me because she thought my beard trimmings were clogging the bathroom sink, and another who blamed our problems on my insomnia.
These failed romances remind me of the baffling incompatibilities two people can have, but also how love can transcend even the most insurmountable obstacles when you find the right person.
Before we started our relationship, when we were just two friends with the same illness texting for hours, I asked Shannon, “Do you think two sick people can be together?”
“Yes,” she replied. “I think when you’re both sick it makes it easier and harder at the same time.”
“I guess the downside,” I said, “is there’s no healthy person to take care of you.”
“But when you’re alone there’s no healthy person to take care of you either,” she said.
I had never thought about it like that — the possibility of two sick people being in a successful relationship together. I have always assumed that one person in the couple would need to be healthy. Two sick people can’t take care of each other.
But Shannon and I take care of each other in ways I never thought possible. I may not be able to make a meal for her, but I can have takeout delivered. And she may not be able to be my caregiver, but she can post an ad looking for one. We have done these things and many others for each other, from opposite ends of North America.
We share an empathy that only two people with the same condition can feel. We know what the other person is going through on bad days; we know how exasperating it is to explain invisible symptoms to doctors only to face skepticism. And we know all too well what it’s like to be immobile in an ever-moving world.
Even so, we don’t know everything about each other. We don’t know what we were like as healthy people. We don’t know what differences lie between our current selves and the people we were before getting sick — what maturation and emotional hardening have occurred during that transformation. Most fundamentally, we don’t know what it’s like to have a vocal conversation with each other.
Shannon has never heard my voice. She has never heard me berate a telemarketer or mumble to myself after making a typo. She has never heard me mess up a dinner toast or tell a corny joke. She has never heard me whisper into her ear or come up with a witty reply. She has never heard me ask a question or speak my mind, to anyone.
And she may never get to hear me do any of these things, but that’s O.K. Here is this lovely woman, devoid of judgment, who loves me for the words I type to her on my phone.
I never loved any of my previous girlfriends the way I love Shannon. I wanted to tell her how much her companionship means to me. I had tried before, many times, without success.
Still, I felt I had to try again. Somehow I had to convey, without typing, what I was feeling. My text messages were inadequate, and I thought about using hand signals, but the heart-shaped hand gesture felt far too clichéd.
So I tried to use my voice. To my surprise, for the first time in months, I heard actual sounds coming from my mouth. With my jaw locked, I whispered through clenched teeth, “I … love … you.”
“What?” she said, startled.
I took a deep breath and fought back the nearly unbearable pain in my throat and jaw. Tears began to well up in my eyes. I whispered again, this time using all the strength I had: “I … love … you.”
“Oh, sweetheart,” she said. “I’m so sorry. I don’t know what you’re saying.”
I wasn’t sure what was worse: the emotional torment of not being able to speak or the physical pain of trying. After everything I had been through — the months of struggling to stay alive in my sickbed — and finally finding the love of my life, I couldn’t tell Shannon that I loved her.
Lucky for me, I didn’t have to. As if straight from a heart-wrenching scene in “Love Story,” Shannon took my hand, gave me a soft kiss and said, “You don’t have to say anything. I love you!”
Now, months later, it still holds true: For us, love means never having to say anything.
