From graduate school to retail, via epilepsy road.
If it weren’t for Internet support forums, I’d never know the stories of other epileptic people. Guilt lifts through catharsis when you realize that so many of the things you blamed yourself for were really none of your fault, or not as much of your fault as you–as I–thought.
I’ve read versions of my own story so many times, often nearly verbatim. Many of us wallow in retail, like me. I went from studying political theory to selling granny panties. Computer coders find themselves coding whether you want fries with that.
I’ve been ashamed and angry at myself for years. But I realized, we can only make informed choices on how to act when we have all the facts.
I have focal epilepsy and wasn’t diagnosed until age thirty (2018). Up until then, I thought I just had epic panic attacks on steroids. It wasn’t obvious because I don’t have tonic-clonics. I was afraid of it happening in public because I was terrified I’d not be able to escape a room and collapse. I have a license but have never driven alone and haven’t driven at all in thirteen years because I am afraid of blacking out for a few seconds while driving. I’m borderline agoraphobic. My fear of seizures caused me to cramp my life and miss out. I was even afraid of how I looked during episodes.
But restricting my life out of shame and secrecy only led to more lies and shame and secrecy—and missed opportunities.
When I left class or work early, I would lie and say I was having a migraine because I thought it held more social cred than panic attacks.
Grad school was a waste because I didn’t take advantage of anything that it had to offer. I commuted by train to my school in New York City. Being deathly afraid of having a “panic attack” on a city street or in school, I spent all my mental focus and energy on getting from Point A to B to C and so on. Survive the train to Grand Central. Get out of Grand Central alive. Get to the bus stop without collapsing in the middle of the avenue. Ride the bus without being a victim of the knock-out game. Get to school, park my ass somewhere safe until class. Get through class without fainting. Now run as fast as I can to the bus stop to catch the express.
It is possible for some people to ward off seizures with fierce concentration but the energy drain involved in this almost makes it the same difference. I can’t remember if I had a seizure at my grad school; I don’t think I did, actually, although short stories I wrote during that period featured students having these episodes. I know I had them in college and at work.
If my life hadn’t revolved around my fear of these episodes, I could have put my energy into writing papers and attending lectures and conferences, or applying for teaching assistant jobs. By the time I finished my master’s, I no longer had any energy to continue. I had hoped to earn a Ph.D. and become a professor, but lack of money, concentration, and passion put an end to my academic career. I was losing my ability to comprehend texts and write creative research papers. My acceptance letter to the Ph.D. program, what I had dreamed of for years, was dead on arrival. It felt cold.
And by then, I wasn’t in love with the subject anymore. I couldn’t have cared less about contemporary thinkers. And there are probably five tenured jobs open in the entire country at any given moment anyway, so good luck with that.
I am not writing these things for sympathy, only to be candid. That was the life of an undiagnosed epileptic. It messes up your plans, kills your memories, tangles up your self-esteem and mental health. And then the drugs make you stupid. But read this post in a matter-of-fact, even optimistic tone.
Why be optimistic when I’ve done nothing but languish in retail for years now? Because I have finally realized the need for acceptance, acceptance as a principle of life. I can’t point to my college self any longer and demand, why can’t you be like her? Why are you so damned slow now?
I’m going to leave the post here because I have more to say on this topic but don’t want this to become a twenty-page essay.
Till next time…
Who the Hell Knows? 
Hugs. I see a brave and ambitious Soul, gifted and talent, that has achieved a master and PhD ( even if you don’t have it, you were and qualified for it). With the challenges of health ( undiagnosed) , that stupid social cred we face in our 20 that just stops so much potential. But, it is never too late, never. Our young age, and pain, physical or emotional stop us. But even though you have gone through much and so much fear. I see a very accomplished Soul, bright, clever and full of potential. So go for your dreams, evaluate your dreams, they may be different now. There is no social cred or timeline that is set. Set your timeline and cred, your own free will, and go for it. Your blog is a beautiful platform to share your story, your learning, your teaching , your thoughts, at your pace that allows for health issues, and space.
I think you are amazing. And you have achieved a lot on top of health issues and fears. See your greatness
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Thank you so much, Bella. Each and every word of yours lifts me up. I have had a shift on perspective over the last year and a half which is helping me realize that I can reevaluate things from other angles, that even if one path is closed, there are still many others. I used to be very rigid about this, believing that things have to be done a certain way and certain requirements must be met. I’ve learned a lot about the need for positivity, flexibility, faith, and not being so afraid. Any success I have, though, I have to credit my support system, the people in my life. I’m very fortunate that way. BTW the Ph.D. would’ve taken another six years so I had a long road ahead before earning it, although I’m grateful I at least was admitted. Anyway, thanks again for your kind praise, I have spent a lot of my life beating myself up and it’s taken time to learn how to appreciate kind words.
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Welcome. As you said in your post, others people stories are so similar to yours, even verbatim. I get the beating myself up, and life should be like xyz… and that I always say was my 20’s. Life gets harder as we get older, but life gets easier as we get older and wiser. Wiser is the learning, flexibility and adaptability to life. I am sure you will be true to your potential. 😊
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I like how you say life gets harder as we get older, but easier as we get wiser. I can see a difference from my twenties. Things don’t feel like the end of the world, things I used to flip out over barely make an impression. It’s a relief, actually.
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It is a funny thing, but our 20’s really- our headspace. Sometimes I wonder if its a female thing too. 🤔
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Let’s blame our hormones. “I didn’t mean to kill him! I have PMS!” “Oh okay, you can leave then.”
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😊
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There was a doctor in Fort Worth. Well, back up. A musician I knew started feeling bad. Really bad. He went to the doctor, she ran some tests, said she’d call him. She did. He asked her what it was, and what he should do about it, and she said, If it was me, I’d go buy a bottle of tequila and take it and a shotgun into the woods.
In your case I’d call confusion masquerading as “mindfulness” of your situation and unworthy of either tequila or a shotgun. There is no shame in illness. I have this. I might swallow my tongue or bite Mrs. Jones, but it’s nothing personal. okay?
We all spend way too much time wondering what is wrong with us and how we can fix it back to “normal.” Which is a complete waste of time and energy. Like Gus the dog, we should take our meds, take a nap and go look for a tennis ball and someone to throw it. Who or what we were is gone. There is no understanding it, partitioning it, justifying it, labeling it… There is only where do we go from here with what we have to work with. Nice that you’re pondering it, but I’d bet all this self evaluation is about as beneficial as watching Gomer Pyle reruns. You’re a Catholic. As the man said ,”Count your fucking blessings.”
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I dunno, I think self-analysis can be beneficial when we use what we’ve figured out about ourselves. It’s useless when we don’t learn. I agree 100% that we must ask where do we go with what we have. That’s a step up from what I used to be and has taken years, more than it should have, to realize. I’m an introvert, and I live in my head. Change occurs more slowly in the inner world than outside. Maybe I secretly enjoy the endless ruminating about myself. Or maybe not so secretly. No, that’s only half too, because pointless ruminating is indeed not beneficial and is in fact detrimental to progress in life and general happiness. There is a balance between thinking and action. I think.
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I am an introvert who lives in my imagination. I would be living under a bridge or dead by now if I hadn’t discovered vocational theater. A way to be myself in public situations without taking them seriously. All of the personal discovery journeys are long but once we learn we inflict a great deal more pain on ourselves than is really there it gets a lot easier.
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Now this is a revelation–Phil’s an introvert. What is vocational theater?
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Like all class clowns and overly “cool” guys.
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Ah, the tears of a clown….
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Yeah, any longer and I’d have started nodding off. (Kidding.) That’s the trick of the serial: spoon feeding works if you give them only a few bites. “If you’re good, I’ll give you three more bites tomorrow.”
Seems you could have used a friend during your school commutes.
What of the others you found online? Any that you connected with?
Fictionalizing your bustle through Grand Central could be a fun write/read. Or on the train. What about a full-on seizure where your fictionalized self wakes up in the basement of the subway… Some pasty-skin guy is spoon feeding you, your arms and legs are tied. You have another seizure and wake up in a pool of blood, the arms of the chair are broken away and Mr. Pasty is lying there, blood still oozing from the gouge on his neck.
Uh, sorry. This SepSceneWriMo’s got me fictionalizing the most innocent of scenarios.
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I don’t get this–whenever people suggest I fictionalize something, it always involves violence and gore. I must give off a very strange vibe. I do like your scenario, however. I won’t steal it from you in case you need it next month. With online support stuff, honestly just reading stuff and knowing I’m not nuts and all our neurologists really are stupid is enough to satisfy me. I am fortunate that I had someone waiting to pick me up at the station when I got back. At school I had a friend from Chile who was having her own struggles, so we struggled together. Grad school is nothing but unnecessary mental turmoil inflicted on you by these pygmy wannabe philosopher professors. I am not bitter about academia at all.
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Once a story idea is released it cannot be used again…
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Fifty Shades of Gray fanfiction (itself being fanfiction) says otherwise.
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I jest, of course, nothing new under the sun.
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Well written! This thing about epilepsy, I couldn’t explain it any better than you could. I didn’t hide it because I was/am used to telling people about my hearing loss, so of course I told them about my epilepsy. Your focal epilepsy sounds similar to what they called mine, PNES, psychosomatic non-epileptical seizures. Basically, pseudo seizures. Triggered by anxiety. I never knew when it would happen, because unbeknownst to me, it wasn’t neurological, it was anxiety that induced them. And I didn’t have a handle on the anxiety. As a result, work was extremely difficult, not just because of the hearing loss, but also because of the seizures. So I know exactly what you meant when it can control your life.
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Hey Joe, nice to see you. Glad to see a fellow epileptic here! Focal seizures and anxiety attacks have massive overlap. I have read your posts about PNES. Yours started as childhood absence seizures, right? I didn’t have those, I just started getting the deja vu when I was around twelve and then it escalated badly in college into the panic attack style ones. You reach a point where you don’t know where anxiety ends and the seizure begins. And stress can bring it on, too. Getting a diagnosis was such a relief, to be able to put a name to it. It relieved a large portion of my anxiety. It’s always exciting, what can I say.
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I’m VERY glad that you found out your diagnosis. It was a game changer for me. Yeah, I had childhood seizures aka petite mal epilepsy, but I have no clue when it changed over to PNES. The anxiety covered it up well. But I’ve only had two seizures since I found out and that was three years ago. Yeah, I found your posts, and got caught up reading. My phone wasn’t telling me when you were posting, I found you in my spam folder! Love your style, keep it up!
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“Game changer” is definitely a great way to describe it. Having a name for something gives you some power over it. BTW I’m glad you found me in the spam folder! Er, I mean glad I’m glad you found my posts but not that they were in the spam folder 😬.
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LOL Yes, me too!
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Bummer of a story. At my site, I try to keep it on the up-and-up so viewers don’t get downcast. It’s amazing how words — even written words — can affect one’s mood.
Still, they’re also a cathartic form of therapy so it’s a balance of sorts. You can keep it bottled up and suffer, or you can share and hope others benefit as well from the sharing. Hmm … yeah, well, I’m doing okay so I’ll just keep the bad days bottled up until they pass. Just my personal choice.
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I don’t intend to be a bummer. I do my best to emphasize I’m not fishing for sympathy and I hate when people think I am. I do however cherish when other people take the time to bitch. Complaining on your blog is different than in real life, I think. In real life, I think it’s better to keep things to yourself and only share them with one close person who understands you. I like bitching about work but I don’t like to bother people with heavy-duty stuff. I prefer to let them talk. People think you’re a great conversationalist when you do that, by the by. On a blog, people can skim what you wrote or click away altogether. You’re not holding them hostage. I am grateful for every commenter and everyone who reads, but I don’t hold it against anyone if they don’t.
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Alright, that’s sensible, Hetty. The persuasive power of blogs is an incredible tool, we can agree on that.
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Indeed I am an eminently sensible human being.
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I actually can NOT relate, and it feels insufficient to offer sympathy–“thoughts and prayers”–but I know you and others with the same condition who adapt and keep going, which I admire greatly. I keep coming by to see how you’re doing, and I enjoy your writing, both content and style! I hope you have a good day today. OH and I guess I could offer a little wisdom from someone who is older by a factor of some unnamed cardinal number, and it’s not much: it almost doesn’t matter in one small, specific way, because happiness and those various things that we think add up to a “good life” really only consist of moments, here and there, and we all get that–if only we would notice–and in between, we just do whatever it is we need to do. So, again, here’s to good days.
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Hey Roy. I appreciate your well-wishes and your stopping by. I hope you’re having a good day as well. You are right about the little moments. One thing that turned depression around for me was keeping a gratitude journal. I thought it was the dumbest thing but I tried and I’ve kept up with it for almost two years. I do it every night and record four to six things, no matter how I have to scrape the barrel for something tiny. This is most necessary on the shittest days.
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This might actually be the best review I have seen for the notion of keeping a gratitude journal. I too, have thought it sounded like the silliest idea, but it’s not as if I have made great strides keeping my depression in check by doing anything else. You may have just convinced me!
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And remember, the secret is no “buts,” “even thoughs,” or “excepts.” Don’t say, “I am grateful I went to yoga today, even though I’ll always be a lardass.” (NOT saying you are–it’s the sort of thing I used to say to myself.) Just say, I’m grateful I went to yoga today.
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I get it. I too am very used to disclaiming my successes and happiness. Then I’d get accused of needless self-deprecation and I’d be like, “no, this is just disclaiming for accuracy”, etc. I appreciate the expert tip
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Yes!! I love how you worded that–“disclaiming for accuracy,” as though someone’s gonna call you out for not telling the whole horrible truth about yourself. I hope the journal thing could work for you.
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Acceptance is key to everything in life, and I’m glad you’re exploring that. I, too, am trying to explore acceptance in the various parts of my life, at the very least to move on and better my situation. I can’t do that if I dwell on my problems.
I appreciate your candour for this post, and I’m glad you wrote about it, because you do it so well. It’d be a shame if you stopped writing and depriving the world of your words. Thanks for this post!
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Thanks, Stuart. I’m glad you understand the points I’m trying to make. Sometimes we just have to think our way through things to help us understand them better so we can move on, having put it all to rest.
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Some rough life passages indeed, Hetty. Praying much growth and joy this year and beyond for you.
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Thanks so much, Mitch. It’s nice to see you. Your prayers are appreciated.
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Oof. Such excellent writing, and such a difficult story to share.
Honestly, getting to that place of acceptance is probably the highest level of achievement, I’d argue even higher than a prestigious PhD or impressive-sounding career. (I can’t speak to the former, but I have the latter and can confidently say that does absolutely nothing with respect to getting to self-acceptance).
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Thanks for understanding my points. JYP. These worldly achievements can be nice, but don’t do a damn thing unless we respect ourselves first. And if we do that, we put them into the proper perspective in our lives.
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“I’ve read versions of my own story so many times, often nearly verbatim”
How strange. And here I am another one! I bought a telescope when 16, becoming extremely passionate about astronomy and space exploration. At the same time though I was struggling with knee problems and being a naturally active person, that made everything more difficult and my choices weren’t necessarily what I would’ve taken. I studied astrophysics at university and my initial plan had also been to do a PhD and just work in that forever. Then my knee recovered through surgery, time and exercise, and I became less and less passionate about the degree itself and was lucky to get it over the line in the end. But I got the Master’s degree. I went on a 3 month trip in the states, couchsurfing with strangers. Then I came back and got a job in…retail! For 18 months. At university I’d got really into computer programming, and after getting bored with retail I got a job doing that. But instantly regretted it because sitting in an office is not for me, and I’d already learned that at university. I simultaneously re-injured my knee though.
Anyway long story short by the age of 30 (2018) I’d been struggling and struggling and hit a wall, and with my knee problems terminable there was no way to resolve the conflict. That was also when I discovered ADHD and mental health stuff in general, then OCD, then autism. The parallels I have with this post are ridiculous. In my own way, I could also never reach the same cognitive heights as before because exercise for me was like putting on glasses for my brain. And now OCD and PTSD are making me slow and dumb.
I would also write 20 pages to list all the things I related to here lol, but:
“I have had a shift on perspective over the last year and a half which is helping me realize that I can reevaluate things from other angles, that even if one path is closed, there are still many others”
This made me happy to read! Because I’ve also been going through that realisation and self-rediscovery. It was on a similar timescale too, though it continues.
That’s what it’s all about! You aren’t your circumstances or what you’ve done in the past— they make up who you are but the ability to reinvent is one of the most powerful qualities you can have. And it’s an act of great humility and dignity. And that’s what comes across— you are dealing with this with great strength and dignity!
P.S. you have a huge talent for writing, you could potentially write an awesome book about your experiences with undiagnosed epilepsy.
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Dang Robin we really do have some scary parallels! Barely getting over that MA finish line. Physical/mental pain or illness can really sap your energy for life when you’re just busy dragging your ass from day to day. It wasn’t my knee, but my foot that I hurt that’s screwed up a lot for me physically. And then I’ve suffered from the anxiety and depression…. It’s funny you mention writing about the epilepsy, I have found that when I write about it I usually get a polite F you, get over it. Not from everyone of course. If you look above, a fellow commenter named Joe Valente gets it. I think you understand what I mean when I talk about being affected by a misbehaving brain even if you don’t have epilepsy. Thanks for understanding so much! I am always happy to see your comments.
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