Sex and Sickness Part 3

Do you know the feeling of persistent loneliness? The kind that slowly creeps into your mind, then your body, as it leaves you starving for affection? For the sake of this post and our mutual commiseration, I hope you do, but maybe you are one of the cheerful extroverts that never gets lonely. In such case, just try to feel lonely for a few minutes while you read this post. Thanks

I’ve been dealing with persistent loneliness for about seven months. Well, it’s actually been a lot longer, but I had my last taste of intimacy seven months ago, so we’ll go with that.


My last intimate experience was with Kira. Well, actually, that’s just the name I came up with to protect her identity. I’m fairly certain we are the only two people who can connect her real identity to the pseudonym I gave her. But ironically, some people knew her as Kira before this post went up — it is the name I gave her in my unpublished memoir Not Like The Whiskey, which I’ve shared with a dozen or so people. So sometimes people will ask me: “How’s Kira?” It makes me laugh, and then feel really, really creepy. In fact, sometimes I even find myself calling her Kira in my mind.

Okay, now that you know the full extent of my creepiness, let’s call this tangent done.

So Kira came back into my life right around the time Mia exited. It was good timing, and although I didn’t expect the feelings I first developed for Kira to return, they did. They really did.

I’ve known Kira since college, but we drifted apart after graduating and I got sick. So I was surprised when she sent me a text message a few days before I had a falling out with Mia. I initially ignored the message because, in addition to still talking with Mia, I was actually holding a grudge against Kira for not reaching out or coming to see me after I first got sick.

Why did I hold a grudge? Well, probably because I’m an immature baby trapped in a man’s body. (Oh wait, that’s Donald Trump. My bad). No, actually I’m just a little sensitive at times, I guess, which I think is understandable considering the situation I’ve been stuck in for the last two years (but really six years).

When Kira first arrived the room was very dark. But as she walked through the door she ushered in a stream of bright light — she was literally glowing. It was summer so she was wearing tight Daisy Dukes with white lace around the edges. But I could have cared less about her tight-fitting shorts, I was fixated on one thing only: Her hair.

And you thought I couldn’t get more creepy. Hah!

So, yeah, I’m moderately obsessed with Kira’s hair. She has this amazing wisteria-like hair that has always fascinated me. It’s brown with natural blonde highlights all bundled up into a maze of beautiful, vivacious curls framing her soft, gorgeous face.

She knows how obsessed I am with her hair and despite it being one of my most creepy infatuations, I’m not ashamed she knows it. 

Okay, so Kira, gorgeous hair and all, walked into my room, she was glowing, it was the first time I saw her in at least four years. She was more beautiful than the last time I saw her, and while that could just be the intimacy deprivation talking, I really do think she got prettier.

Within seconds Kira was sitting next to me holding my hand. Within minutes she was in my bed and within a few hours we were wrapped in each other’s arms, daring one another to make the next move. While we danced around actually kissing each other, she rubbed my head and traced patterns with her fingers on my chest and back. It was both tortuous and one of the sweetest moments I have ever had. Why tortuous?

Well, she had a boyfriend. Hmm sounds familiar, doesn’t it? I don’t know why, but I have a tendency to get involved with women who are unavailable.

It was such an incredibly frustrating situation — there I was with an absolutely gorgeous woman showering me with affection, something I had been starved of for such a long time. She was making herself available to me, at least in that moment, so what was I supposed to say? “Sorry Kira (or whatever your real name is), but you have a boyfriend and I must respect the sacred bond between girlfriend and boyfriend”? It would take an incredibly strong-willed person, someone infinitely better than me, to say such a thing. I’m not that strong when it comes to temptation. At least not lately.

I knew she would eventually leave but if she was making herself available to me than I wanted to take advantage of it. I couldn’t read her mind, but to me it felt like she was thinking “Okay, I didn’t expect to have this connection, and I know I love my boyfriend, but I think it’s okay if I pretend, just for this weekend, that Jamison and I are a couple. We won’t have sex, maybe we will kiss. NO, we DEFINITELY won’t kiss. NO KISSING! But I’ll just be with him and it’ll be really beautiful.”

That evening we both laid facing each other, our legs tangled, not talking, but enjoying our senses — the sound of us breathing in unison, our respective fragrances, the smiles we were toting. We quickly fell into a cycle of heavy petting and getting as close to kissing as possible without actually letting our lips touch. It was almost like we were playing a game to see who would touch the other person’s lips first. And we both lost a few times, but none were a full on kiss. It was more like the way a small aircraft skids alone a runway before finally touching down or the way a rock skips across the water when thrown just right.

It was actually pretty fun, until it wasn’t, but it was certainly a rare indulgence in feeding my need for affection and intimacy. It became a cruel game that I couldn’t play anymore. So I kissed her, softly, and then I quickly pulled away. I wanted to see her reaction, but it was dark and hard to tell, except that she seemed unfazed. It was a very tender and sweet moment.

Later, after we said goodnight, she snuck back into my bed. But when I tried to kiss her again she seemed hesitant. It was then that I got this weird feeling: It was okay to hold her, but not kiss her. So we spent the rest of the night snuggling. And that was it.

In the morning, there was more mild affection, but no kissing. Then she left.

She was crying as we said goodbye. I had never seen her cry, and she admitted she wasn’t the type to cry; she never cried. But there she was, crying.

It was at that moment I realized the sadness was about me being sick. She was crying, not because she had shared a romantic weekend with a man she adored and she was sad to leave him. She was crying because she had a nice weekend with a sick friend and there was nothing she could do to make him better. She later told me she got in bed with me because that’s the only place we could “hang out” and if I were healthy and out of bed we probably wouldn’t have ended up snuggling and being so affectionate with each other. I think she was right, we probably would have hung out on the couch with a safe distance between us, all while I secretly hoped we would end the night holding each other. So I guess I have being sick to thank for bring us closer together. But after Kira left I found it hard to shake the feeling that she was, at least partially, acting out of pity. I still can’t shake that feeling, probably because I know nobody wants to fall in love with a sick guy, even if they are legitimately attracted to him.

Kira told me she would be back in a couple weeks. It’s been seven months. Immediately after that weekend we had this intense correspondence that neither of us wanted to let go of, but it eventually we did — it faded, as many things do over time.

For the first month or so we talked everyday. She sent me a text message from work every morning and took me on virtual adventures via video chat in the evenings. We even made a date for her to come back and visit, but that week she wasn’t feeling well, then she had car problems. I offered to pay for a rental car, but she refused.

Now I’m lucky to get a text message from Kira once a week. And when I do, her messages are usually happy ones congratulating me on my improved health. But I can tell that the romantic feelings she had for me for that brief moment in time seven months ago are gone. Her messages are now full of happiness and excitement in the way somebody feels about her dear friend, not how a beautiful woman gets excited to kiss her boyfriend after a long absence, or how anybody gets excited about a new romance. She, as it seems, is madly in love with being my friend. But even so, our friendship has become peripheral to her.

She occasionally sends me messages that say “How come we don’t talk as much?” or “We should FaceTime more!” And to that I want to say “Well, you gotta put in more effort. It’s just not my style to keep pestering you until you respond to my messages.”


A couple weeks ago Kira told me she was flying to visit her family. It sounded like a nice trip. She was messaging me from the airport; it was good to talk to her. We hadn’t talked in awhile, and naturally, I wondered how things were going with her boyfriend. (I know, I’m a creep). I wondered because (1.) the last time we spoke the relationship wasn’t going well and (2.) she told me the next time she’s single we’re gonna do a lot of making out. (Yes, I am desperate enough to cling to something she probably meant as a joke, but that’s okay). Later that week I saw photos she had posted and there was her boyfriend along for the trip to see her family.

And that’s why I hate following Kira on social media. Even when her boyfriend isn’t in her photos, it’s just hard for me to see her life and not be part of it. It’s kind of heartbreaking.

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But if there’s one thing I’ve realized about being sick, it’s that no one person, or even many people can cumulatively break your heart the same way life can. A love interest can break your heart, but you eventually get over it. When life breaks your heart, oh boy, that shit sticks with you. So whether it was Sasha or Mia or Kira (or any of the other pseudonyms I’ve come up with that end with a), no person can break my heart beyond repair, certainly not the way life has, and as depressing as that sounds, it’s not as bad as putting my mental health at the mercy of a single person.

And that in turn, allows me to focus on the sweet and tender moments I once shared with Kira.

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A few months ago I saw photos Kira put on Facebook of a vacation she took with her boyfriend. There were these romantic shots of just the two of them kissing while silhouetted in the setting sun. Initially I got upset, consumed by my jealousy, but then I remembered I know what that feels like, and not just kissing in general; I actually know what it feels like to kiss Kira. And that’s something I’ve wanted to feel since I first met her. And if that’s as far as our relationship goes, that’s enough for me, because it was something special, if only brief. So I clicked through her photos again. And there we were — our eyes closed, shrouded by the sun, kissing each other.

Please subscribe to my blog for more mushy confessions about my nonexistent love life, and also some random posts about chronic illness and the occasional political rant. Wow, that was a good pitch. I should be a salesman!

My Domain

For the most part, I have made an effort to keep politics off of this blog. I realize there are people who read my writing that voted for Trump, just as there are people who voted for Hillary Clinton. Hell, there’s probably even someone reading this who voted for pornstar, Mary Carey during California’s 2003 Gubernatorial recall election. I voted for none of those candidates. And while I may not have succeeded entirely at keeping this blog free of politics, I am an opinionated person, and I am human, so that’s okay with me. Now that the political landscape is shifting, I want to make a few things clear. The following is spurred mostly by interactions I’ve had on this blog as well as social media.

First, I want to make it clear that disrespect or hate of any kind will not be tolerated by me, even if the person does not deem it to be so. In other words, I will not hesitate to block, delete, or use any method available to combat trolls.

This blog is quite literally my domain, as is my Facebook profile and Twitter account, and all the other social media stuff. It’s silly to take it all so seriously. It is, after all, just a bunch of words on a screen made to look presentable by some otherworldly language that all comes together by thousands of miles of fiber optic cables underground. Okay, yeah, maybe it’s more serious than I thought.

But anyway, I feel this needs to be said in order to set some people straight. In the past, I have had people tell me what I should and should not write about, and more recently, I had someone tell me, during a heated Facebook argument, that I “lack comprehensive reading skills.” The first person was marked as spam, because anyone who tells me what not to write is just that — spam. And the second person, although he was once someone I called a friend, I blocked and deleted on Facebook. It is a bummer that it came to that, but here’s the truth for you: It doesn’t matter how close our relationship is, if you insult me — question my intelligence — I will absolutely cut you off. I have a debilitating disease that makes it incredibly hard to string together coherent sentences (let alone read the garbage this guy was saying). He has no idea. This post — these words I’m writing — is a damn miracle. I couldn’t do this a year ago. And by the way, I’ve had essays published in major publications like Men’s Journal and Quartz, so despite my disability, I think my reading comprehension is just fine. But for him to insult me in such a way is, as far as I’m concerned, on the same level as Donald Trump making fun of a handicapped reporter, which whether you believe he did or did not do on purpose is irrelevant — insulting someone is insulting someone regardless of how you justify it.

For the guy who recently insulted me, I had not heard from him in years — not when I first got sick, not when I was near death — not even a text or email. Yet he did not hesitate to lash out at me on a post which featured an exact quote from Donald Trump — one that was insulting, degrading, and disgustingly lewd. So that person is gone, thankfully. But my greater point is, and I recommend other people who value peace of mind consider it, anyone who does not bring something positive to my life, including my life online, is best dismissed. I cherish different views, and I encourage people to express their opinions with me, but they better be respectful is all I’m saying. 

Let me leave this post with an image. Think of online interactions as visiting someone at his or her home. If I comment on your post, I’m stopping for a cup of tea; if you say something on my post, you are coming over for dinner. Now, I can’t remember a time when I was a guest at someone’s house and I suddenly and belligerently started shouting insults. Well, there were a few drunken times during college, but hey, that was college. Anyway. Let’s keep it classy — stay respectful and all will be well (I hope).

*On a lighter note, we’ve sold 85 “Show M.E. the Money” shirts, which means roughly $400 will be donated to the Blue Ribbon Foundation, with an equal amount used to pay my medical bills. Yay! Now, there’s only TWO DAYS left to buy them and I REALLY want to get to 100. Let’s make it happen!

Where Have All The People Gone?

*Disclaimer* If you are reading this post there is a 95% chance the negative parts are not directed at you. The people that I call out will probably never read this. And if they let do, I hope we can chat about it. 

People come and go, but for me, since becoming bedridden, people have only come in and out of my life, not the other way around. They come and go, but I stay put. It’s a one-way street, a lonely road leading to a turnaround. This is nothing new. But for some reason it has never affected me more than it does right now. I imagine it’s because I don’t have much to distract myself from loneliness. People come to visit (or text me saying they want to visit), maybe they even make a few social media posts about doing so, but eventually they move on with their life while I remain stagnant. Don’t get me wrong, I’m grateful for the people in my life no matter how short-lived our relationship may be, but it seems to me those who stay in my life the shortest amount of time are making the gesture more to feel better about themselves than lift my spirits, or anything else for that matter. 

For instance, since word about my poor health has spread, a number of people from my past have sent me messages, but the vast majority of people who do, never come to visit even when they say they will. I know life gets busy, but I still prefer honesty over a false promise. 

Often people send me messages saying something like “Hey buddy, heard you’re feeling shitty. I’m gonna come visit you soon. We can hang out and have some laughs.” Then I don’t hear from them for a month. But my favorite message is one like this: “Hey there, so I heard you haven’t been doing well. I want to come visit, but I know you are probably busy or don’t want visitors. But I hope you get better soon, then we can hang out.” To this I usually reply, “Hey! Yeah it’s been rough, but I’d actually love to see you. Might have to be a short visit because I need to rest, but when can you come?” Then I don’t hear from them. 

I would much rather get a message like this: “Hey man, so I heard you’re getting better, I’m glad! I can’t come visit because my life is crazy and you live like 1,500 miles away in the middle of . . . Wait, where do you live again? Anyway, get better soon, man, and if stuff mellows out for me I’ll try to come see you,” or an even better message would be “Hey cutie, I’m coming to visit, see you Saturday. I know you can’t have sex, but maybe we can just snuggle and kiss a little. Then I’ll leave you alone to rest, but I’ll comeback in a couple weeks and we can do it all over again. Sound good?” Yeah, I definitely like that last message. 

A few weeks ago marked the one year anniversary of moving into my current home. It dawned on me that in the year that has since passed I have not gotten out of bed. Before I had been, with the help of friends or paramedics, moved to different beds or once to the emergency room, but now, perhaps because my health has stabilized, I’m just stuck here in a dark room. I still can’t believe it. I haven’t left the confines of four walls in a year. I haven’t even left the confines of my mattress in a year. Before I got sick six years ago, or even three years ago when I was still walking around, I couldn’t have imagined being confined to city limits, let alone a house or room. Although I have been living this reality, I still can’t imagine being so restricted in my movements. It is this immobility that has left me in a precarious position, constantly having to wait for people to visit me instead of having the freedom to visit others. 

I have been surprised by who has supported me during this tough time and who has vanished or remained silent. Some of my best friends from past parts of my life have essentially gone missing — some have yet to communicate a word to me or my family in the nearly two years I’ve been severely sick. For months my mind has wondered about these old friends. These are people with whom I have shared some of the most exciting and personal experiences of my life. We are bonded in such a way one would think there would be no hesitation on their part to reach out if I got sick. But now that I am sick, not only has there been hesitation, there has been a failure to act by my old friends. 

I have concluded the reason many of my old friends have disappeared on me is one of two things. They could be too afraid to get involved in such a complicated and messy situation. But on the other hand, it could just be that they don’t know how. Because of me they could be faced with emotions the likes of which they have never fully experienced before. Perhaps they have always blocked them out, or chose not to acknowledge them. Perhaps these emotions are unprecedented in their life. I doubt it. Instead, the emotional reaction that I create for them is, more likely, one in a series of reoccurring events of which they have never learned how to adequately cope. Either way, it’s hard for me to fault them, but that doesn’t change that I have at times been hurt by their absence in my life. It would be easy for me to take it personally, as if they don’t care about me. But I know, like most human relationships, it isn’t that simple. 

Now that my health is improving, it’s not like I’ve been hiding. In fact, recently I posted a political piece on my Facebook page and one of my best friends from adolescence made a number of comments on it, but directed at someone else. The two were engaging in a debate, which I don’t have a problem with, except that it meant watching my ex-best friend essentially hijack my post. It showed that he was obviously capable of typing words and sending them to another human being, but just like the last two years, he failed to send them to me. It was like he brought someone over to my house, but didn’t speak a word to me, and instead talked to the other person about politics the entire time. Again, it’s easy for me to take it personally, thinking he cares more about politics than his best friend from adolescence, who is now sick and was recently on the precipus of death. But I don’t take it personally. Okay, maybe I take it a little personally. Ah, yeah, you’re right — I’m bitter as shit about it! 

During the period of time that I’ve been sick, I have had an incredible amount of support. It just hasn’t been from the people I would have first imagined. I ultimately feel abandoned by many of my best and oldest friends, and while I know I’m not entitled to them going out of their way to see me, I hope they know that they certainly aren’t entitled to my friendship.

Still, I have found solace. There is something very special about making new friends and acknowledging the unlikely saviors that have supported me through tough times. These people may not always be there, but someone always will — I am lucky enough to have a revolving door of support. As long as that door keeps letting people in, I can handle its constant spinning. And as much as I want to stay bitter at the old friends who have gone away, I know that if one were to make more of an effort in the future I certainly wouldn’t hold a grudge — I’d let them in the door. 

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