Living with it

Anger mostly, an inability to recognize emotions, dissociative episodes, seizures, obsessive behavior, and plenty of other problems, but mostly anger. Those are some of the reasons I prefer not to write about my experiences. However, that said, there have been a number of events in my life that have compelled me to both think a lot more about living with PTSD and PNES.

Start with the panel that got me writing about disability, I tried to keep that discussion focused on living with seizures. I wanted it to be about living with what is, for most of the time, a completely invisible set of problems. From the outside who would know that I’ve been prone to falling over in the middle of where ever and choking on my own tongue. That I’ve had profound lapses of memory, debilitating headaches. The list goes on, and its a long one. But here’s the problem, my seizure condition is likely tied to PTSD and head injury. Thus, it becomes difficult to discuss one without discussion of the other.

Directly after the panel I was met by a couple of different attendees. Some of them wanted to thank me for talking. Some of them thanked me for my service. And a couple of them wanted to compare notes. One fellow in particular wanted to know if PTSD would manifest as a sort of long-term amnesia. And here I had to pause and think about what I was going to say. First, because I’m not a doctor or any sort of health care professional versed in dealing with a career of PTSD/PNES cases. Second, because my experience is all I have to go on. “That is not my experiences,” I replied hoping it would sate the guy, knowing that he needed a plot device to move his story along and I’d just robbed him of it.

This evening I took a very long walk around the neighborhood. I did this because, despite my best effort, something got to me today. I was seeing red for a while there and any more when rage takes over the best thing for me to do is stretch my legs until my spirit calms. Senator John Walsh made the news recently when a crack investigative reporting team at the New York Times broke the news that the former General did not correctly cite works used in a thesis.

A friend and veteran posted this editorial piece by Alex Horton on the topic which appeared in the Washington Post. I got to the end of the editorial and that’s where the rage started to hit me. It took a long walk for me to sort through why I was feeling so much anger and hostility.

I know that the first reason I felt anything at all is that Alex Horton’s experience is clearly not my own.

I was sitting in a college classroom less than a year after coming home from Iraq. We were discussing Shakespeare. I was thinking about dead bodies in Baghdad. It was jarring and uncomfortable that first semester, but I knew I couldn’t let my struggles influence my academic career.

But there’s a catch to this that I don’t believe is immediately apparent. It wasn’t visible to me at first that’s for sure. Throughout Horton’s editorial he uses his experience as a baseline. Deliberately he juxtaposes his struggles with PTSD and the challenges of getting an education to erect a moral bar that he has clearly passed and that the Senator has not. “I have PTSD and I never cheated,” he is saying.

Here is the problem I have with this attitude. It lacks any trace of empathy. Horton is acting as little more than Walsh’s judge from the podium of his own experience. Yet anyone with an internet connection can find plenty of examples of people with a PTSD diagnosis acting in an anti social way. And on the grand continuum of sociopathic behavior plagiarism barely registers as less-than-benign. And if Horton knows anything, it should be that you don’t survive a battle as an “Army of One.” If he’s struggled with PTSD he did so with help. The same aid he’s just denied Walsh for some reason.

The second, much greater reason, I found so much to dislike about Horton’s opinion is that he insists that an act of will was literally all it took to keep him from behaving badly. Not only does this sort of writing underline the myth that all broken people need do to overcome the challenges they’ve been dealt is simply want to get better it cheapens the struggle. Horton is too busy being worried about the slippery slope of veteran employment to pause for a moment and consider how much he’s just taken away from all those battle buddies he’s just tossed under a mental health bus.

“I couldn’t let my struggles influence my” whatever is so much rubbish. Yeah, you’re a mental paragon and a moral exemplar. And from the perspective of someone who struggles with anti social tendencies, sometimes winning and sometimes losing, you’re a fraud. Or if not a fraud, than a coward. If life after what you experienced in the service of your country isn’t littered with momentary setbacks, mistakes, and all the bloody, stinking baggage that comes with this condition than it’s really not that bad for you. If Horton is simply omitting those moments for fear he might have to account for them in the same way he exhorts Walsh to “own up to his mistakes and take responsibility for them” than he’s a coward. Worse he’s mistaken when he imagines that the reading public won’t see through his illusion of moral superiority.

Yes, I say these things from my experience. I make mistakes, I let myself and those around me down from time to time. Sometimes mightily, but, I’m willing to forgive those around me and more importantly, I’m willing to forgive myself. PTSD for me has been a lot like what I imagine living with alcoholism might be like. Once you’ve recognized that you have this problem you should be aware that you’ll likely die with it, if not from it. From that moment forward it’s more a matter of learning to cope with it than anything else. You cannot wish PTSD away any more than you can wish cancer, a broken spine, or multiple sclerosis disease away.


3 thoughts on “Living with it

  1. Hi there,
    I just found your blog by googling “orthostatic hypotension” and PTSD. Six months ago I developed what is known as “PNES”. Thank you for writing this blog, its nice to know there are others out there. I’m sure you’ve found that PNES is a void of shuffling between medical providers who have no idea how to treat one with seizures such as ours. Not to be defeated, I am trying to find a cause and encourage people to move away from categorizing these seizures as a mental health disorder. Though many agree that there are co-morbid conditions that occur with PNES, like depression, anxiety, pain, and PTSD, I do not think they are the cause but rather the symptom on an unknown physiologic mechanism. Just the other day Fibromyalgia was also considered a mental health disorder and is now an ICD diagnosis and considered a neurological condition. Forgive my ranting….thanks for an articulate and interesting blog- keep it up. In the meantime, I will keep rummaging through your entries…

    • Good luck! I spent my retirement trying to figure out what was causing the seizures and constantly fell in a coverage wasteland when it came time for any insurance program to step up to the plate. CT scans, MRIs, and vEEGs are freaking expensive and, at least for me, were never conclusive. The VA wanted conclusive medical evidence connecting my PNES (which occurred more than a decade after my service) to my service knowing full well that the best I’d ever get was a he-said, she-said sort of argument. My health insurance at the time, classified my PNES as a mental health issue and constantly insinuated that if I wanted to get better I would. Finally, my work told me “come back when you’re better.” Even my term disability insurance, a program I had religiously paid into for more than a decade, decided I was sand bagging because while being sick I posted some video of me riding a bike. Didn’t matter that in the video I also crashed the bike or that my neurologist had cleared me for the activity with the understanding that getting outside and remaining active was bound to improve my situation.

      Honestly, when I first came down with PNES I felt much like you probably do. “I need to find out what is causing this, then and only then, can I move beyond it.” That was my mantra and I chased it like a dog circling around and around my own ass end for a long time. Eventually I got tired, then I ran out of money to pay for tests, therapy and medication.

      Several critical changes in me since then. First, I’ve accepted that I’m always going to have the specter of PNES having over my shoulder. If I let conditions deteriorate I will most likely start seizing again. So job one is making damn sure I don’t let things get that bad … ever again.

      This means avoiding stress like the plague and knowing that my collection of fucks just isn’t as robust as I’d like it to be. Yes, I still give them. But I am no longer a crusader. I can’t be. My seizures may not be caused by the same sort of electrical FUBAR in my brain as someone with a traceable epilepsy, but they will stop my heart, drive me to depression, or otherwise end me just as quickly. At its base this change is the result of just a little self-respect. I like living just that much more than I like making the world a better place.

      I’ve also stopped working for my former employer. Yeah, the place where I worked for 13 years was a big source of strife in my life. Golden handcuffs are a terrible, terrible thing. While they hand you the key you know that if you take them off you’ll have to live outside the cell that comes along with them. This has been the cause of much turmoil and chaos in my life since, but eventually you get over that. I’ve even found my earthworm in writing and that tends to make up much.

      Finally, I’ve had to learn to be much more mindful. This has resulted in a guy that values himself and his time a whole lot more than that person from a few years back. Keep trying to get better, it comes a little bit at a time. Health is also much easier to reach if you’re patient.

  2. Dear Mr. FeetforBrains,
    Thank you for such a thoughtful, honest, and meaningful reply. It means a lot. Hearing that your PNES is in “remission” means good news for you and hope for me. I was sorry to hear about your disability insurance ditching you, and yes, those MRIs and CTs are terribly expensive!
    PNES has significally altered my life. Six months ago I was frolicking around without a care in the world (well, that may not be totally accurate, but I like the visual) and *BAM* I was blindsided by my first seizure. I’ve become quite indignant over the lack of care (and scientific research) that comes with medically unexplainable symptoms. As someone in the medical field (pharmacist) I was expecting something more clinical when it came to an explanation. I have a ways to go before I can approach this with a more zen-like mindset, but I will consider accepting my “specter, though not before I give it a thorough beating. My collection of fucks hasn’t gotten dusty yet, so I’ve been using them to put together a paper/poster I plan on presenting at the American Epilepsy Society’s annual conference (this was my new year’s resolution- hopefully one I finally keep).
    In the meantime, I wish you luck in your journey and thank you again for your response.
    Health is so much easier to reach when you’re not a patient… 😉

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