The Ends of the Earth 

The Ends of the Earth 

For the last week or so it has been in the triple digits in the Sierra foothills where I live. Judging by the weather reports this seems to have been a heat wave stretching through most of California and perhaps beyond. But the high temperatures haven’t even been the worst part. What is most frustrating is how it doesn’t cool off at night. The other day, for instance, the high temperature was 104 degrees and the low was 71. It was also 80 degrees at midnight, which is about as hot as I can handle without AC blasting in my face. Now, I realize that a lot of people who read my blog use celsius, so I’ll save you going to Google and converting those temperatures: it’s been really hot and hasn’t stopped. 

I realize that although the hot weather certainly isn’t pleasant by any normal standards, it is considered fairly typical for this region during the months of June through September.

What is not typical, however, is that merely a week before this heat wave started, it was snowing. Yes, SNOWING. HERE. IN JUNE. Sorry, I hate using all caps, but this is ridiculous. To go from snowing with thunder and lightning to triple digit temperatures is far from normal. 

Now I don’t want to get all liberal and preachy on you, but in my mind it’s pretty easy to recognize the source. It’s hard to argue that this unusual weather is anything but climate change. Perhaps this kind of crazy shift in the weather has happened in the past, I’m sure it has, but how do we know that wasn’t related to polluting the Earth during bygone times?

I recently got an invitation to attend the screening of a new documentary called “In This Climate,” an event in NYC hosted by a group called Liberatum. There are a lot of great pundits in the documentary who say some very insightful things. 

In particular, there was one line in the trailer from a pundit (whose name escapes me at the moment) and it stood out to me the most. I’m paraphrasing, but it was something along the lines of: the climate change we are experiencing today is a result of the emissions and other pollution from 20 years ago. 

This makes me think that the dramatic shifts in the weather -– snowing one week and triple-digit temperatures the next– that have happened in previous years, or decades, may have been repercussions of even earlier pollution. In other words, if the weather was dramatically shifting in 1990, perhaps it was a result of the ballooning fossil fuel emissions from the 1970s. 

Now for those who think I’m just being a biased liberal when it comes to climate change, let me just pose this question: what exactly am I biased about? 

I have no ulterior motive or anything to gain from preaching about climate change. I’m not going to get rich from people using solar energy and driving electric cars. I merely have the same interest that, frankly, everyone should have: to keep the Earth habitable for as long as possible. 

Having said that, I know how difficult it can be to reduce your eco-footprint. It is extremely difficult, as someone chronically ill, to not harm the environment. The number of nitrile gloves alone that I go through each day are enough to give Al Gore a heart attack. I wrote about these struggles in an Op-Ed for the Oregonian a few months ago and not much has changed for me since. If anything, in fact, my eco-footprint has grown as I have increased my treatments. 

I try to cut myself slack in this regard because ultimately the governments and corporations of the world are the ones who can make the biggest difference in reversing climate change. And I do realize that as individuals, we have to look out for ourselves first, especially when it comes to our health, but at the same time, that doesn’t mean we have to show a blatant disregard for the environment. I mean, maybe it’s too late to save the environment (though I honestly don’t think that’s true), but I certainly think it’s worth trying to save it. And while it’s certain that one day — whether it is in 100 years or a million years — the Earth will cease to exist, as will all of us (sorry I had to go there), but when the end does come, I guarantee nobody will be saying: “Damn, I should have used more plastic.”

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A Post for the Misanthropes

A Post for the Misanthropes

I hate people. Okay, maybe not all people and maybe not all the time, but I can definitely be a miserable and bitter misanthrope. And to be honest, it suits me because sometimes there is no better way to cope with the horrors of my circumstances, and humanity’s shortcomings, than to just write everyone off. 

Don’t get me wrong, I also love people and the way they touch my life — they have the unique ability to lift me from the depths of despair, but in this moment — as I write this post — I absolutely hate people. 

Through the months of struggle, even as my poor health has improved, I have developed a sourness in my heart, of which I’m not accustomed to feeling. It has, when compounded with the ennuí I’ve been living with since I first got sick in 2010, pulled me further away from the person I want to be and closer to the worst version of myself. 

There’s no doubt in my mind that my anger and bitterness toward people is a mechanism justified only in my mind’s account of my suffering. In other words, I’ve been through some awful shit and I can’t control my temper because of it. 

I used to be a nice person, I swear. And while I’ve always had misanthropic tendencies, the difference now, I believe, is not that humanity, and the world around me, has changed but rather that I’ve become a less tolerant person. I’m the one who has changed, as have my circumstances. With the trauma I’ve endured in the last decade has come an inability to put up with even the slightest inkling of bullshit.

I don’t have a filter, as my mom says. I’m impulsive. Not Donald Trump impulsive, but I used to have more restraint and patience when dealing with frustration and unenjoyable people. 

For me the hardest part of this is feeling helpless in not being able to be the tolerant, poised person I have always been. 

Nevertheless I can’t help but feel hostile toward some people, usually those with a lack of decency, even if they think otherwise. In my current situation I have no sympathy for these people, especially when they are able to freely walk and talk — things I cannot do. 

In a stew of loneliness I recently started talking to a stranger on Tinder. After a few cordial messages in which I asked all the questions and she asked none, we started talking about her work. She told me it involved a lot of multitasking. I told her I’m horrible at multitasking. She then asked me: “So walking and breathing at the same time is an issue for you?” 

Pretty condescending, right?

This woman obviously knew very little about me. If she had taken the time to ask me a few questions she might have known that I’m bedridden and subsequently used her best judgement (assuming she has any) not to make an insensitive joke. 

I kept my reply simple: “Yes, actually, walking and breathing is an issue for me because I haven’t been able to walk for the last two years.” And I may or may not have thrown in a middle finger emoji (🖕).  Okay, you’re right, I didn’t flip her off with an emoji because, well, that’s just sophomoric. So maybe I’m not as mean as I think I am. 

This is probably a good time, however, to admit that I am a profoundly unhappy person. And the fact that I didn’t flood my Tinder match with a barage of four-letter words is uncharacteristic of my behavior as of late. There is, truthfully speaking, very little joy in my life these days, besides writing and corresponding with the few people I enjoy talking to regularly. But even they are witness to my unhappiness.

My lovely godmother, who is probably the most nurturing person I know other than my mother, recently sent me a picture of a rainbow she saw while walking around on a rainy day. My initial reaction was to reply by sending a thumbs down emoji (👎) and a frowning face (🙁). I almost sent them, seriously, but then I realized two things: (1.) There was no emoji that accurately represented my unhappiness and discontent in that moment and (2.) I would probably ruin her good mood if I sent anything of the sort. 

Looking back on this, as well as countless other recent moments when I’ve nearly lost it, I keep thinking: “Who the hell am I?

Who sends (or even thinks about sending) a thumbs down emoji when his godmother, a kind and thoughtful person, sends him a photo of a beautiful rainbow? I might as well have sent her a middle finger emoji. 

For most of my life I’ve been very passive and unassuming, which worked for me to a certain extent. But I had always admired people who showed remarkable pragmatism and faced conflict with no remorse. They spoke their mind and didn’t take flack from anyone. They would not be intimidated and were always up for a fight. 

As my personality has shifted more toward these traits, I must say, it’s not all I thought it was cut out to be. As initially gratifying as it is in a hostile situation to say the exact thing you want to say at the exact moment you want to say it, the feeling soon becomes heartbreaking. Nora and Delia Ephron wrote a similar line for the movie You’ve Got Mail and it really stuck with me (obviously since I haven’t seen the movie in years). Joe Fox (Tom Hanks) writes to Kathleen Kelly (Meg Ryan) and asks if she has ever felt like the worst version of herself. I feel like this all the time, or at least lately I do. But I also feel (and know) that I can’t help it and that it’s largely out of my control. 

Who can be a polite and happy person while being stuck in bed for two years? Who can be a generally pleasant person when they haven’t gone outside, let alone left a room in just as long? Who, in the name of Vātsyāyana, can be nice to anyone when they haven’t had sex in four years? I’m convinced every unhappy person ever has dealt with his or her own version of these circumstances. 

When I find myself in a particularly intense angst, my mood definitely gets the best of me. Lately I have not hesitated to write people out of my life because I feel it is justified. I also feel it is harsh. But I just can’t swallow my discontent sometimes. It may be a projection of me trying to demonstrate some control over an often unbearable situation — my chaotic life and poor health — of which I have very little control. 

One week recently I told three friends (also former romantic interests of mine) that I didn’t want to talk to them anymore. One of them told me, seemingly passive aggressive, that she was sorry her friendship wasn’t good enough for me. Damn right it wasn’t good enough for me! 

Friendship, or any relationship for that matter, involves putting in effort, that of which exceeds sending a two-word text message every other week. I may have been a little harsh in writing her off, most people, my pre-illness self included, would have simply let the friendship run its course, eventually watching it fall away to wherever stale relationships go to die. But this sort of relationship is just too ubiquitous for me right now. I have seen countless people I once talked to daily or weekly regress to a listless “Like” on Facebook or Twitter, if even that. 

So here I am, fighting with myself over my crass behavior, but also knowing that it’s okay. I haven’t done anything terrible and given the circumstances I could be a much worse person. The stress of dealing with inadequate health insurance, financial problems, and an ailing body in need of constant care, is immense and enough to turn my soul rotten. But for the most part my soul remains ripe. I am still the same playful and compassionate guy I have always been. So for the people whom I have written off, now is not the time to reconcile, but I hope there will come a day when we can look back and laugh, only to enjoy our rekindled relationship. We are, after all, imperfect and deserve to give each other some slack. 

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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. 

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