PTSD and ME

Awhile ago I posted a photo on Twitter of Betty Ford affectionately and adorably hugging her husband, President Gerald Ford. Soon after someone commented, “Drunk?”

My initial reaction was to tell them to fuck off. I wasn’t drunk. I don’t even drink. I can’t, my illness doesn’t allow it. Although sometimes I wish it did. And why do I have to be drunk to post a photo of Betty Ford? Because I’m a liberal and her husband was a Republican president? I was pissed. I wanted to throw something.

I was obviously overreacting. But I wrote back: “Huh? I don’t drink.”

Then the person replied, “She was drunk.”

I found that to be a bit mean and at the very least a big assumption (Betty Ford was an alcoholic, but that doesn’t mean she was drunk in the photo). But I still shook my head at myself. Not because I was agreeing with the person making light of her alcoholism (I actually really like Betty Ford. She was the first First Lady to sleep in the same bed as her husband, talk about her sex Life, and advocate breast cancer awareness after her mastectomy, which saved many women’s lives by urging them to get mammograms).

The reason this Twitter exchange made me shake my head was because of my initial reaction. It was impulsive and a little embarrassing. I was in fight mode from the moment I read the subtweet. But, like Betty Ford’s underlying alcoholism, my reaction had very dark origins that put me in a constant state of fight or flight, emphasis on fight.

As Danny Trejo recently said about life in prison, there’s no anger, you just go straight to rage. Most of the time that’s how life feels to me — I wouldn’t say I get angry, I usually just go straight to a burst of rage. And once I go to that place, it often gets worse. It’s like the rage builds and builds without me even knowing it, and then it explodes through my body in a catastrophic moment. Then, I’m stuck facing the repercussions of a very sick and very angry body that is just waiting to erupt again, waiting for something, anything — a fly to buzz nearby, the wind to blow a door shut — so it can continue to rage.

And I suppose I’m not as innocent as I make myself out to be. Sometimes I consciously allow myself to go down this path of rage. I mean, let’s be honest, there are more arguments on social media these days than can possibly be won. Yet I still get sucked in… What’s that? You say Jeff Sessions fired Andrew McCabe because it was recommended by someone from the Obama administration? Ah, go fuck yourself. Or at least that’s my initial reaction. Then, after a brief pause, I remember: Oh, right, I really don’t give a shit about any of this. I don’t care who Trump fired this week or how his supporters justify it. But my brain has become wired to dive head first into the fight. Any fight.

Even if someone says something obtuse, not necessarily offensive, my mind immediately turns it into a slight against me. The dangerous part is that I usually react in a combative way and that usually means hurting myself by letting the cortisol build up in my body and because I’m low on the vital hormone, it only makes me sicker.

Then, if I’m really amped up, I’ll yell or throw things at the wall, which is a horrible idea for someone with limited speech and strength. It only injures myself on top of getting sicker.

Whether it’s a face-to-face interaction or a Twitter spat, these exchanges and the reactions they cause in my body, have made me think back and really consider the underlying causes from my past.

The Car Crash

If we’re talking about the cause of PTSD, or being stuck in fight or flight mode, or whatever you call it, it’s worth mentioning that the entire country is probably dealing with some version of this, especially those who have endured discrimination and hate as a result of the current administration. It seems we’re all on edge and looking for a fight.

So maybe I have a little of the Trump trauma going on, too. But more so, my trauma likely started in 2009, a year and a half before I got sick with ME and Lyme. I was in a fatal car accident, which I’ve written about on this blog before. My physical injuries were very minor, nearly nonexistent, really. It was pretty remarkable considering the severity of the crash. But in retrospect, there very well could have been some serious underlying complications from the accident. And I’m talking about more than just the psychological trauma of having ended someone’s life, although that is immense.

If there was one thing I could have done differently immediately after the accident (besides not inexplicably exaggerate the speed at which I was driving when asked by the police) it would be to have my brain and nervous system checked for damage. I’ve actually never had a brain scan, not even since I’ve become sick. But had I done one back then, not only would it have given me insight into any damage done by the car accident, it would have also given me a comparison to the current state of my brain. Oh, and the car insurance would have covered it. Damn!

One day, hopefully soon when I’m able to travel, I want to get a brain scan in the hope that it will still show an abnormality that will at least shed light on my condition. Awhile back, I heard an episode of Joe Rogan’s podcast in which he interviewed a doctor who was studying how some people with physical brain trauma ended up with PTSD. I often wonder if such has been the case for me after I hit my head during the car accident.

I think a brain scan might show something abnormal in a similar way. Maybe not the same as a football player or soldier, but maybe to a lesser degree. If so, I can’t help but wonder why people like me end up sick and bedridden while others with PTSD are still able to walk and talk. I imagine it’s because they do not acquire a slew of other illnesses like I have.

Stuck in Fight or Flight

Recent studies on the brains of people with ME/CFS have shown abnormalities. I seem to remember one out of Stanford showed increased gray matter (whatever that is). Whether such abnormalities will one day correlate to PTSD and the fact that I feel like I’m always stuck in fight mode, I don’t know. I suspect they will.

Like most people, I’ve heard about the struggle of post-traumatic stress syndrome. But oddly enough, it never occurred to me that I might actually have PTSD from the car accident until recently, when people started suggesting that it might have contributed to my illness. I have no idea whether this is true, or even possible, and I don’t think even the best doctor or medical technology can tell for sure. But even if it is true, it’s important to distinguish between “caused by” and “contributed to.” It’s possible that PTSD contributed to me getting and/or staying sick. However, I don’t think it’s possible that my illness was cause by PTSD.

My PTSD goes far beyond the car accident. I have a lot of trauma that has stemmed from being sick. There is intense trauma that accompanies not being able to eat solid food and communicate my needs with caregivers. These things ignite a primal, visceral fear within me that has led to profound trauma. And I’m pretty certain that trauma has caused me to get stuck in flight or fight mode. Usually fight mode. After all, I can’t take flight. I’m stuck in bed. I can hide under my blankets, but that’s about it.

I also find myself panicking way more often than I used to. I live in fear. The fear of getting sicker, making myself sicker. I fear germs and new medications will make me sicker. And I panic when I think they have. But I do my best to live as normal as possible. I push aside the panic, PTSD, OCD, and a bunch of other acronyms, in order to seem untainted by the shit life has thrown at me. But on the inside I’m a wreck. So much so it’s probably to my advantage that I can’t speak more. If I could then people would probably know the true depths of my inner turmoil.

If I had to guess, the feeling of constantly being on edge, not letting innocuous stuff go, and getting sicker because of it, is caused by a tangled web of PTSD and poor physical health. I think severe adrenal dysfunction and a lack of essential hormones also play a big factor. Oh, and as my mom says, I don’t have any filters, which is so true. I used to have all kinds of filters that allowed things to float over me and fade into the abyss, or go wherever meaningless shit goes to die. I used to be able to workout, or have a beer, or go to the beach. Now I’m just here in bed looking at walls I want to punch.

Do I have an answer to how to make it better? Absolutely not.

All I know is that I’m doing everything I can to treat my PTSD. I’m taking hydrocortisone to boost my cortisol levels. I’m treating associated health issues. I continue to try new treatments. I meditate, sometimes. I breathe with my belly. I try not to yell or throw things. And most of all, I try to be kind and gentle with myself and other people, even though I sometimes fail. I’ve been through some incredibly awful shit in my life and I want to give myself, and the people around me, the slack needed to deal with that. Sometimes that means crying five times a day. Other times, it means saying fuck it and throwing something against the wall, even if that causes my body to get sicker and I inevitably regret it. This is something I hope everyone dealing with PTSD and chronic illness allows themselves to do. The stricter you are with yourself, and the more you try to fight the repercussions of what you’ve been through, the more exacerbated your issues will become. Hopefully one day soon we’ll have better ways to treat these issues and a better understanding of how PTSD and physiological illnesses are related. Until then, I’ll try not to throw any more things at the wall.

A few things before you go:

1. Thank you for reading! Please tell me about your experience with illness and PTSD in the comments section.

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To What Lengths People Go

Getting the proper medical and health care that I need has been a struggle since I first got sick in 2010. I was lucky then to have a support team who helped me, even from afar, navigate the mysterious landscape that is MECFS (myalgic encephalomyelitis / chronic fatigue syndrome). And as I got sicker many people stepped up to help when I needed it most. But time fades all. 

There is only so long, and to a certain point, that people can help, no matter how much they love you or care about your well-being. People burn out. They run out of time and money and mental bandwidth to lend to even the most beloved person in their life. 

The unfortunate reality for myself, is that I’ve been sick long enough that people have stopped helping and it shows. I’m sure they still care, but a detached version that allows  them to still sleep at night while I remain awake at 3 AM writing a cathartic blog post. Ahem. Who me? Sigh

Don’t get me wrong, I don’t feel entitled to anyone’s help, but I certainly feel discouraged when I need things that can’t be accomplished by my own doing or that of someone I know. I’m talking about things I need, not far-fetched wants. 

This is the problem and I don’t fault anyone. It is a fucked up situation, and a helpless one for me. 

The people I depend on most are overworked and overstressed and deserve to relax and not have to cater to the needs of someone as sick as me. But when they don’t my needs remain unfulfilled. It is a paradox and a reminder to me that this is my fight, at the end of the day I’m in it alone. And I have never felt more alone than this very moment. 

Then there are the people who think they help, but don’t. Or the people whom I ask for help, but politely pass the proverbial baton to someone else, or to the universe, or to some old father figure in the sky of whom I don’t believe in. But what irks me most is when I ask for what I need — medical care (the AHCA isn’t going to help — I need Medicaid, sorry folks!) and caregiving (not a Ferrari or a mansion) — and then I am made to feel guilty because I asked. It’s not my fault that I need help. Trust me, I am the last person to want help and perhaps it’s a lesson for me to have to ask. But I still dread it, 

So this is all to say one thing: I’m over this shit. I’m so tired of hoping someone or something is going to come along and make my situation better. And the hardest part is I know it is a manageable situation. All I need is a kind and intuitive caregiver for six hours a day. And I need a nurse. And a doctor. And a “vampire” to draw my blood. And a cute woman to snuggle with me at night. And some good books to read. And a new a episode of This American Life every day. And unlimited kombucha and Cliff bars. Sounds like a party, right?

Okay, vent session over. Thanks for reading. Hopefully things get better for me and the people I love. But even if they don’t, just know that I appreciate that you read my blog. Oh, and please check out my latest essay for Mic. 

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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