My Modern Love Essay is in The New York Times

My Modern Love Essay is in The New York Times

One evening a couple weeks ago I woke up from a nap and groggily checked my phone, then my email. Sitting in my inbox was a message from Daniel Jones, editor of the Modern Love column at The New York Times. Even if you haven’t heard his name, it’s likely you’ve read, or perhaps even listened to, his work.

I have been familiar, probably even obsessed, with the Modern Love column for years. As far as essayists are concerned, there is no bigger platform. One former contributor to the column called it the literary equivalent of landing a spot on American Idol.

It’s incredibly difficult to get an essay published in Modern Love. I imagine this is because it’s highly competitive, but also because the timing has to be right. For instance, I read that one of the essays chosen in 2012 had better odds as it focused on Mormonism because Mitt Romney was running for president. Even still, timing is always tricky. Last year I wrote an essay about my mom. I submitted the piece a month before Mother’s Day, hoping it would be accepted in time for the holiday. It’s always good to think ahead. Still, I ended up waiting four months for a reply, only to be rejected. You just never know how the submission process will go.

But, like any persistent writer, I tried again.

This year I decided to send in another submission, but change things up a bit. I’ll try to take you through my creative process, but bear with me, describing what goes on in my mind could get messy.

I knew I needed to nail down a unique topic. I wanted to subtly raise awareness about Lyme disease and ME/CFS by mentioning the two in my essay, as I typically do in all my work. But I also needed something broader, more captivating, something everyone could relate to. So I thought about who I love because, after all, the column is about different kinds of love.

The only problem: I love a lot of people and I’ve written about many of them already. There was one person I hadn’t written about, though. Coincidentally I had been wanting to write about my girlfriend, Shannon, for a long time. After channeling my love for her, I had to figure out how to write about our relationship from a unique perspective.

I tried to focus on the most abnormal part of our life together. If you read this blog, then you know my life is full of unusual things, but I needed the piece to relate to both of our lives. It felt like I had already written about most of the abnormalities in my life. But I went with my first thought, which was to write about how Shannon and I are confined to such small spaces. Then I came up with the idea of comparing that to the lifestyle of healthy couple (we’re both sick, if I didn’t mention that).

Most couples spend maybe eight hours in bed each day, but we spend all of our time in bed. Though, I had some issues with accuracy on this. For starters, Shannon and I don’t live together, so it would be hard to make the case that we spend all of our time together in bed. When we’re together we do, sure, but we’re not together often enough. Unfortunately, for the last few months we’ve both been bedridden in different countries.

With this in mind, I broadened the essay’s scope and narrowed its time frame. This way I could honestly say that when we’re in the same place we spend all of our time together and also mention that we live apart, adding another layer to our already complex relationship.

Then, for reasons I’m not conscious of, the 70s movie “Love Story” popped into my head. Perhaps it was just because I really enjoyed the movie, but I latched onto the famous exchange when Ryan O’Neal’s character tells Ali MacGraw’s character that he’s sorry, and through tears, she replies: “Love means never having to say you’re sorry.” Or at least that’s how I remembered it in my mind.

By some sort of free-association, I decided to change the last part of the famous line to fit with the circumstances of our relationship. I write most of my essays about parts of the human experience, many of which are different for sick people. I have written about how relying on my smartphone isn’t an addiction, it’s survival; I’ve written about how I want to have kids but can’t because of my chronic illness. So perhaps it was this template of sorts that gave me the idea to rework the famous line from “Love Story.” But then came the really hard part: actually writing the essay.

Researching Modern Love

While I wrote the piece, I also researched the types of essays that have been featured in the column in the past. I religiously listened to the Modern Love podcast, which has celebrities read the essays written for the column, and at the end of each episode Daniel Jones, the editor, gives his take on each work. I tried to absorb as much of his perspective from the podcast as possible, but I also combed through his posts on the Modern Love Facebook page. That was a big help. Particularly, I really latched on to a note on the Facebook page encouraging writers to submit their essays even if they hadn’t been perfected. I took that to mean: quality is important, but a submission doesn’t necessarily have to be flawless to get accepted. In other words, syntax can always be tweaked later on. I assume this is because most essays go through a couple rounds of editing before being published, so there’s plenty of chances to polish up each sentence during the editing process. This is also my guess because topic and narrative arc seem to be emphasized in Modern Love essays. I could be wrong on that, but it’s a pattern I’ve repeatedly noticed.

I have read a lot of Modern Love essays and, while there are other similarities, the common denominator I always notice is each essay has an unusual perspective on a relatively common subject. There was the man who dealt with the death of his father through the lens of a dying goldfish, or the lesbian couple who grappled with their evangelical Christian faith, or the single woman who decided to forgo social norms and ask her local baker on a date.

Acceptance

When I opened the email from Daniel Jones I was expecting to get a rejection, but at the same time I suspected that he may surprise me. Mainly because his email came less than two weeks after I submitted the essay and the rejection I got from him last year took four months. This time, I thought, he was either really on top of his rejections or I had just landed the publication of my dreams. I opened the email and found my essay was accepted. Although I have to admit, I had to read the email several times to make sure it properly registered in my mind. For two reasons: (1.) sometimes acceptances aren’t really acceptances — maybe an editor wants you to work on your essay some more and resubmit it, but won’t commit to using it; or (2.) maybe an editor is just being nice and you read the email wrong and it’s really a rejection.

Thankfully, I read correctly. Daniel’s email said that my essay was “lovely” and he wanted to use it. Honestly I can’t remember a moment in my career in which I have been so happy. I used to write about port-a-potties. I once wrote about the best nightclubs in Durham, North Carolina; I’ve never been to Durham, never been anywhere remotely close to North Carolina. And I didn’t even get a byline for those pieces. Now I was going to write, as the podcast says, about “love, loss, and redemption” for The New York Times. And I did. Today you can find my essay, “Love Means Never Having to say … Anything,” online and in the Sunday edition of the newspaper this weekend. Please check it out.

If you can’t tell, now I feel like I can die a happy, or at least content, person. While I may have other goals I want to accomplish, it’s hard to imagine achieving anything more satisfying than writing for my favorite column in The New York Times. This is something that seemed unattainable for such a long time, especially while I’ve been stuck in bed. But I did it. I accomplish one of my loftiest goals without leaving my bed. Ha! Beat that George Saunders! Just kidding. Nobody should aim for trying to accomplish anything without leaving bed. Well, except maybe some really good sex. And sleep. Try to get some really good sleep.

All I’m trying to say is I will probably accomplish many more things in my life, but when I do, it will most definitely be “icing on the cake,” an extra bit of success on top of the things that fate nearly kept me from achieving.

Lastly, thank you for being part of my success — as my health has gradually improved I wouldn’t have kept writing without this blog nor would I have maintained it without readers like you.

Before you go:

1. Thanks again for reading!

2. In case you missed the link to my Modern Love essay above, you can read it online here. But also, please consider reading it in print. It’s nice to read something tangible sometimes. The essay will run in the Sunday edition of The New York Times this weekend. I think you can get it at just about any Starbucks or chain grocery store.

3. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would be very grateful!

4. If you would like to donate to support this blog I would be equally grateful!

Life Without Sex: What They Forget to Tell You About Chronic Illness

Life Without Sex: What They Forget to Tell You About Chronic Illness

A version of this essay was first published by Men’s Journal in 2016.

After kissing me for a few minutes, Laura, my ex-girlfriend, pulls her top down and lets me feel and kiss her breasts. I am so excited and nervous I almost enter an apoplectic state. It is a moment of rapid heartbeats and shaky breaths. But before we can go any further my body starts to falter and my health dwindles. My sex drive is still there, but my stamina is not. As I strain my neck to reach her chest I can feel my muscles weaken; for months it has been impossible for me to lift my head higher than my pillow or stretch my limbs. Now, I am physically unable to get to her.

Perhaps recognizing my struggle, Laura (not her real name) brings her body closer to me and then after a few minutes of feeling like an adolescent male at a bikini contest, I begin to seriously doubt my sexual aspirations. Intense nausea poisons my insides as I try to carry on. Soon my body starts to get tremors. My torso and legs are convulsing as I clumsily kiss her body. Finally she pulls away as she realizes the absurdity of trying to have sex with a severely ill, bedridden man. After all, if I died in the middle of sex she couldn’t honestly say it was a surprise. As Laura gets up to leave she turns to me and says, “Thank you, Jamison.” It feels transactional, as if she was validating my parking. I can’t say I expected my sexual desires to be entirely fulfilled, but neither did I expect them to be so crushed. Expectations are futile when you’re chronically ill.

I first got sick in 2010. I was 22, looking to graduate from college, working as a group fitness instructor, and pursuing my passion for bodybuilding. One day, when I was doing sub-maximal squats with 315 pounds, I became violently ill. I spent the rest of the day in a fetal position curled around the toilet before finally going to urgent care. It turned out I had mononucleosis, at least initially, but my condition only got worse over time. Then after months of misery, I was diagnosed with myalgic encephalomyelitis, a mysterious neurological disease sometimes patronizingly referred to as “Chronic Fatigue Syndrome.”

Although it is rare, myalgic encephalomyelitis can be fatal. So when I became bedridden in January 2015, I appeared to be on a slow crawl toward death. I couldn’t speak, chew food, tolerate light or, it turns out, have sex.

It would be difficult for me to say that not having sex was the hardest part, because, well, not eating was pretty awful. Still, going without sex was always on my mind. It was unimaginably hard, particularly knowing that sex is not conducive to recovering from poor health. To this day I still have trouble admitting that sex is not an option, but the truth is, even if I had a willing companion, the post-orgasm exhaustion I experience after sex is enough to ask for my last rites.

I’ve been celibate now for three years. On the few occasions I’ve given myself an orgasm in that time, the following days feel like equal parts sleep deprivation, starvation, and the world’s worst hangover all mixed into a sinister concoction. The problem with abstinence, however, is that the body of a 28-year-old man is accustomed to having orgasms, and it isn’t afraid to take care of business on its own. In other words, if I go a few weeks without having an orgasm, I usually wake up sometime around four o’clock in the morning with my sheets soiled and remnants of some secret sexual fantasy still floating around my mind. These wet dreams scare me. And not just because they have been way more frequent than during puberty. They scare me because I am helpless in preventing them, and they still leave me with the miserable post-orgasm hangover. Sexuality has become a vicious cycle for me. One in which I either give myself an orgasm and pay the price, or I wait for my subconscious to do it in my sleep.

The weird thing about chronic illness, at least for me, is no doctors, nurses, or even patients, seem to talk about sex. A connection between the two is not mentioned in medical pamphlets, or in any of the patient-targeted material I’ve read. Myalgic encephalomyelitis is among the diseases with the lowest amount of government research funding in the United States. There have only been a handful of studies done on sexual dysfunction in patients with myalgic encephalomyelitis; they have all been limited to women and performed abroad. Perhaps this is why nobody talks about sex and chronic illness, or how the urge for sex is still there, but the ability to perform is not. Nobody warns of how the little square condom wrappers on your nightstand will one day vanish, only to be replaced by little square alcohol pads used to sterilize the IV in your arm.

The harsh reality is, I don’t know if I will ever have sex again. At the moment, I don’t even feel like trying; it only makes me sicker. Hopefully one day that will change. In the meantime, I have found peace in remaining celibate. And I know, without a doubt, that as soon as my body can handle sexual exertion again, and I find myself with an attractive and understanding woman in my bed, the rest of me will certainly oblige the urge to have sex.

Thanks for reading! Please subscribe and support my blog!

Love, Virtually 

Love, Virtually 

My time as a sick person over the last six years has been served by a constant pursuit of adaptation — a struggle to live a decent quality of life under awful circumstances. It’s really the only way to survive when your health is variable and always changing. Adaptation has touched nearly every aspect of my life from eating to communicating. I have even adapted the way I look for romance. This post is all about the virtual relationships I’ve had while I’ve been sick. I have given the women mentioned in this post pseudonyms to protect their privacy. 

Her hands were cold, but not as cold as the tarp that she rolled my nearly lifeless body onto. I was almost certain this woman — let’s call her Diane The Paramedic — was the same woman I almost went on a date with five years earlier when I first got sick. There she was, with a small band of municipal workers, trying to get my immobile body onto a gurney so I could be taken to the hospital severely malnourished and dehydrated.

I was too photophobic (light sensitive) to uncover my eyes from the multiple layers of washcloths and a pair of pink tanning goggles over my eyes. But something told me it was her, which is weird because I never met her in person, never heard her voice, yet through a sort of virtual courtship I knew her personality and what she looked like.

I forget exactly when we started talking, but I do remember it was on Twitter and I had just been diagnosed with MECFS as I was trying to find my way in the world after college while concurrently living with the villainous disease.

I was able to discern, from her photos on social media, that Diane The Paramedic was very attractive. She had long brown hair with a subtle red hue. Her jaw line was remarkably chiseled and she had one predominant dimple that I found very endearing. From our conversations I could also tell she was very intelligent and quite funny. I think we even had some common interests, maybe baseball and photography.

I eventually sent her a DM (direct message) on Twitter and we started talking. I was at my mom’s house at the time and she worked as a paramedic in the area. We both hinted at meeting, and then one afternoon I was sitting at a local coffee shop and saw her drive by. I quickly messaged her to see if she could have coffee with me or at least stop to say “Hi,” but she was too busy.

As I laid silently in the back of the ambulance on the way to the hospital, I couldn’t help but imagine it was just the two of us back there. She strapped a blood pressure cuff on my arm and I honestly believed it was Diane The Paramedic’s hands touching me. I knew her name was Diane because the driver of the ambulance shouted “Ready, Diane?” Just before we drove off.

I realize this paramedic named Diane very well could have been a 50-year old who looked nothing like the woman I almost met for coffee years earlier, but I prefer to let my imagination run wild and believe, without actually knowing, that it was the same woman. The imagination is, after all, a magnificent and endless thing that is best used uninhibited. And for that reason, my first virtual romance came full circle that day. But it certainly wasn’t my last virtual romance.

I never got to meet Diane The Paramedic, nor did I ever figure out if it was indeed her who took me to the hospital that day. But I have had a handful (maybe more) of virtual relationships since then. For the rest of this post I’m going to focus on my most recent virtual relationship.

It was only a few months ago that Jenna and I started talking online. A mutual friend connected us. According to our friend, Jenna had been looking for someone of the opposite gender to talk to. I fit that description and when I saw how incredibly beautiful she was I had to send her a message — I too was looking for someone of the opposite gender to talk to. 

Jenna lived in another country, but that had no influence on our conversations. Well, besides forcing us to recognize the distance between us.

Soon enough we started talking about personal things related to MECFS because coincidentally we both got sick with the disease around the same time. Like me, she was also very active before getting MECFS. So we had a lot to talk about and connected with each other on a very personal level.

When I first saw her soft features — fair skin, long brown hair, cute smile — I was kind of surprised. I hadn’t expected her to be so beautiful. She was this gorgeous and eloquent young woman in her mid-twenties locked up inside a house for years fighting a debilitating illness, yet she looked like she had just walked out of a dance class. It was astonishing.

One of the first things Jenna told me was that she had been housebound for several years and was now mostly bedridden, except for short intervals of walking. Due to a bad case of POTS (postural orthostatic tachycardia syndrome), she could only stand long enough to get to the bathroom. Because she had been so sick for so long, and what she called “biochemical changes,” Jenna had experienced intense, manic episodes. I could relate and found it comforting to talk to someone who had been through similar experiences. 

Nonetheless, like many of the relationships I have developed on the Internet with people I’ve never met in person, I didn’t put too much of my heart into my relationship with Jenna. This allowed me to actually be more open and forthcoming with her because I simply didn’t care much about what she thought of me. I would, after all, probably never see her in the flesh.

This led to a moment of truth for us. I started talking to her about how I felt unappreciated by the opposite sex and how I was plagued by persistent loneliness and a lack of intimacy. The conversation eventually passed, but the next day she called me out on something.

She asked why I felt unappreciated when I was talking to her — by all signs, a gorgeous and quite charming woman who did in fact appreciate me. I was speechless. I mean, I couldn’t talk because of my illness, but even if I had been able to speak, I still would have been speechless.

She told me that she really liked me and thought I liked her too, but my comments made it seem otherwise. This was not my intent, but it definitely showed how I wasn’t taking our relationship seriously. I had been seeing her more as a woman who had all the makings of an ideal girlfriend, but who was pointless to pursue because the two of us would never be healthy or mobile enough (or even live in the same country long enough) to have a successful relationship.

Then she told me she really liked me and that she got disappointed when I didn’t acknowledge her interest in me. Now, I don’t care how much distance is between two people, or how unrealistic the relationship seems on paper, if you like someone and they feel the same, well, you are fucked. That’s fucked in a good way. And okay, also fucked in a bad way. Basically, you are just all kinds of fucked, except the kind that actually pertains to sexual intercourse, because there’s too much distance between you.

After we both confessed our feelings for each other, things got more intimate between us. We started talking about sex and how we cope with a lack of a partner. We also started talking on the phone regularly and even doing video chat occasionally. But this is when it got tricky. She was often in too much pain to type and I have limited speaking abilities, so she would call me and talk while I typed out my responses. After we hung up I would usually send her a message, joking that if anyone saw our text conversation they would probably think I was harassing her with dozens of unanswered messages, when In fact, she had replied to each one albeit using her voice.

On days when we both weren’t feeling well, but wanted to see each other, we would video chat for only a few seconds, just long enough to exchange a glance and a hearty smile. One time in particular, I vividly remember staring at her pixelated face and we both smiled through intermittent giggles. It was a beautiful and tender moment, the likes of which I have never shared with anyone else. It was very special and I will always carry that memory with me.

This is pretty much how our relationship went for several weeks. I noticed myself becoming more and more dependent on her for moral support amidst that chaos of paying for medical expenses, finding reliable caregivers, and trying to rehabilitate my ailing body. And it felt really good to have her as part of my support system; I was proud to share my life with someone so special, even if from afar. And though I knew her support and our relationship might not last, I didn’t care. I was intent on enjoying what I had while I had it.

I had moved on from hoping Kira would come back to visit, and despite knowing that I would not see Jenna anytime soon, I let myself dive deep into our virtual relationship. We sent each other snail mail. I wrote her a Valentine’s Day card, which because she lived in another country got there a week late. She sent me a giant package of sea salt, of which only the two of us (and maybe some intuitive MECFS people) know the symbolism. I showered her with terms of endearment — when we would talk after a long break we almost always said how we missed each other, which seemed weird to say to someone I had never met, but at the same time it felt right. It felt good to miss someone and be missed in return.

Then, maybe a month ago, Jenna became distant. She started coming online less frequently, and when she did, she would send a quick message then disappear for a long stretch of time. So I figured she wasn’t feeling well and I gave her space. I soon stopped replying to her messages both because I was stubborn and because it was really frustrating trying to hold a conversation with such long breaks. Then she asked why I wasn’t responding. I now realize I should have asked her why she was being distant, instead of being stubborn myself and not responding. So I told her I felt she was the one acting different, and after talking it over, we both decided it was a nonissue. But we were both wrong.

The next day I got a message from her that started out pretty much how every breakup starts out. I would quote her message for you, but it got erased from our text conversation, so you’ll have to use your imagination. She basically told me that she had been acting different because she had been getting visits from a new guy in her life. Their relationship started out as a mostly physical relationship, but developed into something more.

As crushing as it was for me to know that this beautiful, insightful, and caring woman whom I had come to adore was involved with another man, I was still genuinely happy for her. And I never feel happy for women who break my heart. I’m usually quite bitter and jealous about breakups.

It was quite possibly the first time I was actually happy for someone who broke my heart — after so many years of loneliness Jenna had someone, a real life man — one made of flesh and bones and who breathed, not a man behind a computer screen.

My happiness for Jenna began to erode over the next few days. When we talked I would imagine her with this mystery guy, cuddled up, feeling his warm breath on her skin. I even thought about them having sex. And it didn’t help that she actually told me about her sexual experiences with this new guy.

I was not as happy for her after that. In fact, it kinda sent me over the edge. Not in a “I’m gonna burn your house down” kind of way, but I did decide that it was best for my heart and sanity that we not talk anymore. So I sent her this:

I’m really happy for you. I really really am and I don’t want my bitterness to ruin that. But I just can’t talk to you knowing all that is going on. Maybe if I had something similar. But I have nothing, nobody. I’m starved of affection and intimacy. So I’m still your friend, but my heart just can’t take talking to you right now. I’m sorry. You have no idea how sorry and sad I am.

And that was the truth. I was fed up of having nobody. Even more so, I was tired of having my heart broken. Since I first got sick women have come into my life thinking they are doing good, but in the end they just end up hurting me. I know they hurt too and certainly don’t enjoy hurting me, but they get to move on. They have other options, other suitors to soothe their hurt. I have no such thing. Not to victimize myself, but this is how it’s been and how it will continue to be for the foreseeable future.

My boycott of Jenna lasted, oh, about a day. And then we talked for a few days before I tried again, but I’ve concluded that as long as she messages me I will reply. Unlike some of the other women that have hurt me, she doesn’t deserve to be ignored. She is far too thoughtful to ignore or be mad at.

I know Jenna didn’t intend to hurt me, she even said that if our relationship had been in person she would not have gotten involved with another guy. I feel like it’s easy to say such a thing because it’s impossible to know what she would have done in the opposite situation. Though I like to think that if I was healthy I would have been at her house everyday, charming her, so she had no choice but to be with me.

As for my hurt feelings, they are not pleasant and don’t seem to be going away anytime soon. But there was a short period of time where things were rather magical between Jenna and me, and without that bit of magic, that joy in my life, I would have had nothing that even compared to it. So despite the way our relationship has changed course, I am still grateful for what she has given me. 

Please follow my blog …. it’s not all sad, sappy stuff, I promise!