There Ain’t No Party Like a Pity Party

Have you ever had something go wrong and then it snowballed into a million other things that went wrong? If so, you probably know what I’m feeling right now. You may even know a variation of the anger I feel and how it has led me to do and say things that have probably made matters worse and caused more things to go wrong. It’s the very definition of the domino effect.

But the thing I struggle with the most when things go wrong is feeling sorry for myself and complaining about it to other people. I haven’t mastered the art of acknowledging that things are not going my way while avoiding the bitterness and sadness that often consumes me, the people I talk to, and ultimately, makes the situation worse.

I don’t know how to say: X happened, I don’t want pity, now let’s move on. Well, I do know how to say it, I just don’t know how to stop there and not say anything more. I don’t know how to stop myself from expressing every detail of my suffering because it feels justified and it feels like the only way I can even remotely cope with what I’m going through.

It starts when I acknowledge that something is wrong and then dive deeper into sadness and end up sounding whiny and sorry for myself.

It’s hard to walk that line because I feel a need to acknowledge when things suck — I can’t pretend that being bedridden and unable to speak is normal. And I shouldn’t have to. There are programs that teach people not to acknowledge the physical symptoms of being sick. But just because you pretend something isn’t there doesn’t make it go away. In my experience, it only makes the problem worse because, well, I go a little crazy when I’m in excruciating pain but pretend I’m not. It makes me feel like what I’m experiencing isn’t real.

The other reason I don’t want to pretend everything is okay is because I want other people to know when I’m going through something. Not because I want their sympathy, but because it’s not normal and when you pretend that a sick person isn’t sick, when you pretend they’re perfectly fine, it can be detrimental to their health. I’ve learned that lesson the hard way.

The hardest part about acknowledging that things aren’t going well, and getting others to do the same, is it can look like I’m seeking attention and want pity. I don’t though. I think most sick and disabled people don’t want pity, but we do want fair treatment. We want to not have our struggles swept under the rug. But some healthy people misinterpret that as wanting pity and attention. But there’s a big difference. Wanting pity is getting satisfaction when someone feels sorry for you. I never feel good when someone shows me sympathy. If anything, I feel worse. I feel bad about myself and ashamed of my circumstances. Either that or I feel angry because I’m being patronized.

When life sucks my goal is to say: This is shitty, I want to fix it, or at least acknowledge that it’s not right and move on. I don’t want to say: This is shitty, don’t you feel bad for me?

And while I never actually say the latter, it feels like that’s what some people perceive. Or maybe my own insecurities lead me to feel that way. But more likely, it’s a combination of my insecurities mixed with some people being ignorant.

That’s just how it goes, I guess. I don’t have a solution to feeling sorry for myself, but I am actively trying to avoid it. I find it incredibly challenging to struggle, and acknowledge that I’m struggling, but not dive into the world’s biggest pity party.

The other day, for instance, it was difficult for me to acknowledge that I was too weak to even brush my teeth without letting the enormity — the thick weight of that statement — bear down on me like the profound weakness I was already feeling. But maybe that’s just how it has to be; for now, maybe that’s how it’s supposed to be; And I don’t know, maybe I’m meant to fully feel the weight of my situation.


1. Thanks for reading!

2. If you would like to donate to support this blog I would be so grateful.

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

The S-Word

Warning: This post is about depression and suicide.

I knew early on in my illness that it could last a long time — years, maybe decades. I hoped it wouldn’t, of course, but as I often do, I feared the worst. So, when faced with the daunting thought of being indefinitely sick, I made a deal with myself: If I didn’t get better in five years, I would commit suicide.

That was seven years ago.

And while I haven’t gotten better — my health has actually gotten worse since the onset, much worse — the circumstances and, more importantly, my mindset has improved. For that I’m glad because had these things not improved, well, I wouldn’t be writing this post, and subsequently, I wouldn’t have accomplished and experienced some of my proudest moments.

Looking back on the pact I made with myself, it seems instinctual. Although I don’t remember my exact thought process at the time, it must have felt like something I just had to do — a delegation to myself fueled by survival instinct. I was trying to control a situation I had no control over. Or rather, I was trying to trick myself into thinking I had some control when I actually had none. I think, when you really break it down, that’s what suicide is — a last-ditch attempt to control a miserable situation.

I’ve always kind of had an odd fascination with suicide. I would compare it to Alfred Hitchcock’s obsession with murder — he loved to explore the idea of it, but he never actually killed anyone.

This is to say that I have thought a lot about suicide, both in relation to myself and other people. And if I’m being honest, I have also tried to kill myself. A few times. I would be surprised if anyone as sick as me, or in a similarly dire situation, has not at least gotten their feet wet with the idea of suicide. But, as I’ve found out, sometimes it takes pressing the knife to your skin to make you realize you don’t want to cut yourself.

The truth is, I didn’t think much, if at all, about suicide before getting sick. And I don’t say this to negate the suffering or serious conditions of people with depression unrelated to illness, but many of my flirtations with suicide were rooted in the unlucky circumstances of my life. In this way, illness has allowed me to explore a topic that many people shy away from. Some people even have an intense visceral reaction to it (they stopped reading this post after the first paragraph). But, like the general idea of death, I think it’s important to talk about suicide, especially for people who are seriously considering it or have been affected by it.

The first time I had thoughts of suicide was a year or two after getting ME/CFS. I had just seen one of the top doctors for the disease and he put me on some harsh medications, which I believe contributed to my suicidal thoughts. I remember standing in line for the register at the grocery store after listlessly grabbing a few items. By the time I got to the register I was exhausted and in excruciating pain, but my mind was over it — over shopping, over life, over everything. When I finally got home I said something to my mom that revealed the dangerous thoughts I was having and she kept me afloat until I stopped taking the meds and the depression eventually lifted.

The irony of that experience was that during my next appointment, the doctor told my mom not to worry because the people who actually commit suicide never tell anyone before they do it. So, in his distorted mind, because I let my mom know how dangerous my thoughts were, I couldn’t have been serious about killing myself. For the record, this ignorant logic couldn’t be more wrong. There are countless people who have committed suicide after reaching out to people and talking about their plans.

There were times immediately after that when I had casual thoughts of suicide, but never took action. It wasn’t until two years later that I had another run in with suicide. This was the closest I’ve come to taking my own life. And for good reason. I had been bedridden for a year at that point. That was a year of barely surviving, of having to communicate through hand signals, of surviving on liquefied meals, of urinating and defecating in the same place I slept. It was a year of sheer survival and no, I mean absolutely NO, enjoyment. No conversations with friends. No dates with pretty women. No watching baseball games. No birthday dinner or Christmas gathering.

It was during this time that I so desperately wanted my life to end. And for awhile it seemed like I may actually die from MECFS. But when I didn’t, when it became clear that I wasn’t going to die, but my life would still be taken from me, I decided to seriously consider suicide. Not because I didn’t want to live or I hated life, I just didn’t want to live my shitty life. I imagine this is the case for many people who think about suicide and those who actually commit the act.

Too Sick to Die

My situation was unique in that I physically couldn’t kill myself. At least not initially.

I was too sick to hold a pen, so I didn’t have the physical strength to do it. I couldn’t overdose on medication because I couldn’t open the pill bottles, which were kept in the kitchen while I was stuck in my bed. Any method that involved getting out of bed was a nonstarter and there were no sharp objects around, so my options were very limited.

One plausible idea I had was to use the landyard on my call button to tie around my neck, but I found I couldn’t get it tight enough. My final option, and perhaps the most plausible one, involved tricking someone into helping or at least giving me the items I needed to do it. I wasn’t keen on this, for obvious reasons, but I was really desperate and struggling to live through the pain and misery of being unable to speak, eat, or enjoy anything life had to offer. Not to mention, my support system of family and friends was wavering.

So one day, I had someone set me up for a bowel movement — a lengthy process that involved a plastic garbage bag. But instead of using the plastic bag for its intended purpose, I tried to wrap it around my head. But, like all of my other attempts at suicide, my plan was foiled by my body’s weakened state, or perhaps I was just bad at trying to kill myself, or maybe deep down I just didn’t want to do it. Nevertheless I kept trying.

At first, my arms weren’t flexible enough and I was unable to lift my head off the pillow in order to get the bag in place. But I finally got the bag around my head, though I hurt myself in the process. Then, for whatever reason, I couldn’t sealed the bag– I was still breathing oxygen. And though I’m no expert, I’m pretty sure it’s impossible to die from asphyxiation if you’re still breathing oxygen.

I remember being relieved, though, because yes, I really wanted to be put out of my misery, but I also really wanted a peaceful death. I had this serene image of several friends and family gathered around my bed all saying goodbye and comforting me as I left my earthly body. But I was alone. There were no friends or family around to hold my hand or rub my head as I drifted off into the abyss. And besides, I didn’t want the last thing I smelled to be plastic or the last thing I felt to be extreme pain from hurting myself while getting the bag in place. So I was glad it didn’t work out.

The experience, in many ways, made me realize that if I was ever going to commit suicide I would: (1.) need help from someone and (2.) have to do it in the most humane and painless way possible. As I soon found out, no family member or friend was going to help me kill myself, no matter how sick I was; it just wasn’t going to happen. I mean, I couldn’t even get my friends to visit me because they weren’t emotionally equipped to handle seeing me so sick; there was no way in Hell they were going to be able to cope with helping or even just watching me die. And while I had hoped I could use California’s new assisted suicide law to have a peaceful death, MECFS did not qualify me to do so. So, in other words, it became clear that the whole suicide thing wasn’t meant to be.

Wanting to Die

In college, a friend suggested I watch “The Bridge”. She said it was about the Golden Gate Bridge. Great, I love the Golden Gate Bridge, I thought. I drove across it almost every weekend in college. So one night, before bed, I turned on the movie and quickly discovered that, sure enough, it was about the Golden Gate Bridge … and more predominantly, the people who commit suicide by jumping from it. My friend forgot to mention that.

The most memorable part of the film is the guy who jumps off of the bridge at the end. The cameras, stationed on land, followed the guy for a long time, maybe hours, and showed him pacing up and down the bridge. He was middle aged and dressed in all black with dark shoulder-length hair. If you’ve ever been on the Golden Gate Bridge, you know it’s long. It takes awhile to get from one side to the other, even by car. But this guy just kept going up and down it, almost stomping his feet. He was obviously brooding about something. Then, climatically, he stopped, gripped the bridge’s railing and hoisted himself up so he was sitting atop the red metal beam. There he was — sitting with his back to the water, then he stood up, spread his arms out wide and fell backwards toward the Bay.

I have thought about this guy a lot over the last several years, especially when I’ve been suicidal. I thought about how graceful he looked falling towards the water. I wonder if, in his mind, it was an epic and triumphant moment. It certainly looked that way. It looked like he was in a lot of pain and that was his chance to escape. It seemed like if he was going to kill himself there was no way he was going to half-ass it. No, he was going to stand on the edge of darkness and do a fucking swan dive off it. But there was a fear about him — he seemed to dread his death — and he had a vulnerability that came across to the viewer, even while watching from a far-off camera angle. He chose not to face the water when he jumped. That stood out to me. He did this theatrical leap off the world’s most famous bridge, but he still chose not to look his death in the eyes. Maybe he couldn’t. I certainly couldn’t. I could never be that decisive — most days I can’t even decide what color shirt to wear, so killing myself is out of the question.

Wanting to Live

The guy on the bridge may have spent hours pacing, stewing on the decision, but when he made up his mind, he owned it. And while I’m sure he had a good reason, it’s hard not to think about what the future could have held for him.

For instance, another man in the film jumped off the bridge and survived. Can you imagine that? Wow! He said his first thought after he jumped over the bridge’s railing was that he wanted to live. I related to that feeling. Every time I have tried to kill myself, or even thought about it, I have always concluded that I still want to live. Despite my diminished quality of life and the unfortunate prognosis of my illness, the thought of not being able to experience as much as I can, bad moments included, is less appealing than diving into an unknown abyss — death.

While the level of misery it takes to consider suicide is relative to each person, the choice is universally absolute. When I think about this I always think about that first time I thought of killing myself — I was miserable, no question, but my quality of life was better than it is now, and much better than it was two years ago. I was still walking around back then, driving myself around, even working part time. Now I’m stuck in a room 24/7. But my outlook has changed. I’m not hesitant to get help anymore, both when my spirits are low and when I can’t physically do something. I used to insist on doing everything on my own, but my body eventually gave out. Now I realize that my illness is not as miserable when I have help, and the assistance I get actually allows me to heal and then use the energy I have saved to do things that improve my state of mind. Before I was using all of my energy to do dishes and laundry and buy groceries, then I’d crash without much enjoyment to show for it. Now I’m physically unable to do those things, which may actually be a good thing (for now), because I’d definitely do them if I could and it would probably make me sicker. Having help allows me to do things like write on this blog and I’m grateful for that.

Not to mention, if I had been successful in killing myself I never would have written essays for the LA Times and Washington Post. I never would have been featured in two major documentaries about MECFS and I never would have finished my memoir, which will hopefully be published some day soon.

The Leading Cause of Death for People with MECFS

So, before we part, I want to talk directly to people with MECFS — or any other illness, physical or mental — who are struggling with thoughts of suicide. While people do die from MECFS, suicide is the leading cause of death for the disease (I suspect such is true for all non-terminal illnesses). There have been many patients with MECFS who have taken their own lives and I always feel conflicted about it. I know how hard it is to live with the disease — many people do so for decades — and to make such a tough, permanent decision. So, if you find yourself in a similar place, I’m not going to tell you to call a hotline or reach out for help (although please don’t hesitate to do those things). But I am going to tell you to let time pass. That is the one thing that helped me. I found comfort in having that option. I often thought: I’m so miserable I have to kill myself NOW. But you don’t have to do it now, and if you acknowledge that and let time pass, you may realize that you never have to do it. Things may get better, or they may not, but either way you may find that living is worth the misery. That was my conclusion. Life sucks, yes, but it can be pretty spectacular, and when it is, the misery is worth it.

A few things before you go:

1. Thank you for reading! If you’re having dark thoughts, please ask for help. Call the National Suicide Prevention Lifeline: 1-800-273-8255

2. 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!

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

A Personal Plea To Protest 

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I’ve never been one to protest, well, unless you count not shopping at a certain large retail store whose name rhymes with Falmart. So what I’m about to ask of anyone reading this might seem a bit hypocritical. But that’s okay, I’m gonna ask anyway.

Those of you who have been privy to my struggle with ME/CFS for the last six years probably didn’t know how bad things would get, I certainly didn’t. It’s a dangerous, scary, and misunderstood disease that not only needs more awareness, it also needs more private and government research funding.

Before I got sick I would have given priority to a disease like Parkinson’s or MS, but now I know the exact serious of MECFS; it nearly killed me. For that reason I ask you and anyone you are willing to share this post with, to donate to one of the amazing organizations busting their butt to better understand this mysterious disease. I personally recommend the Open Medicine Foundation or Blue Ribbon Foundation. Both are at the forefront of what needs to change in our healthcare system in order to cure MECFS.

Lastly, and perhaps most importantly in the immediate, is protesting on September 27th. This Tuesday people from all over the world will unite as part of the Millions Missing campaign. 25 cities scattered around the globe will feature protests. Here in the U.S., protests will be held everywhere from Boston and D.C. to Seattle and San Francisco (City Hall at 11 am). It is expected to be the largest and most widespread MECFS protest ever. I hope you will participate. If not for the cause itself, then for me or one of the many lives this horrible disease has tainted. In many cases, including my own current situation, attending the protest is physically impossible. That’s why we need your help.

Now I’m not asking you to kneel during the national anthem, or to stop eating solid food for 18 months, I’m merely asking you to be present for 10 minutes out of your day. And if you can’t make it to protest in one of the major cities, perhaps you can do something in your hometown like tie a blue ribbon to your car or mailbox, or sport a bracelet on your wrist.

At the very least, I hope you will take a few seconds on Tuesday to first remember how much this disease truly sucks, and then to post a message on your social media accounts using the Millions Missing hashtag (#MillionsMissing).

For any or all of the aforementioned participation I thank you in advance. It is these tiny gestures that appeal to my emotions and touch me the most.

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