The Reign of the Migraine

When I was three years old, I remember vividly my first migraine. It may seem strange that a three-year old could remember something so acutely, since memory is still forming at that age. But I remember so truly the deep despair, the confusion over a horrific sensation I failed to understand or articulate, and the fear that the pain would never relent. In between groans of agony and furrowed eyebrows, I remember asking my mother if I was dying, even though I didn't really know what it meant to die, I just knew that it was the worst thing that could happen to a person, and this certainly met those standards. As it is with migraines, I vomited, wept, and slept; a process which took hours to complete. I woke up anew, migraine-free, but burdened with a condition that would plague me for the rest of my life.

SAME GOES FOR ASPIRIN, ADVIL, ALEVE, ETC. JUST NO. 

Fast forward to today. After years and years and years of suffering, my migraines are more volatile than ever. I've moved from the trusted OTC remedy Excedrin, which sustained me for most of my life, to Fioricet, which has a moderate success rate, to Percocet, which sometimes ends the migraine and sometimes amplifies it. I've failed at two preventative remedies, Imitrex and Topamax, as I was allergic to both. Now, as I embark on a new treatment schedule, which will eventually include Botox, I feel slightly more in control of the migraines as they continue to wreak havoc on my life.

Couldn't see "Star Wars" because movie theatres can trigger seizures. #irony

I could attempt to dictate what it feels like to have a real migraine. I could try to articulate the physical and psychological hell the sufferer experiences as they wait for it all to pass, praying that the medication works. And the battle with chronic migraines is never-ending, unless you consider brief, medication-induced reprieves some kind of end. And yet, society treats this illness with the same levity as period cramps, or acne (both are serious conditions, but neither one can cause blindness, profuse vomiting, or pain that resists explanation).

For whatever reason, Migraines have failed to strike much fear, empathy, or compassion into the hearts of those who are living or dealing with a sufferer. Calling out of work with a migraine marks you as weak, and is immediately deemed suspicious. Canceling plans make you a bitch, not someone with a chronic medical condition. Living for days in a darkened room makes you a depressed recluse, not a physically ill person. Migraine sufferers are expected to live in pain, while simultaneously conducting business as usual - a feat any sufferer knows is nearly impossible, even with medication. 

Needles, everywhere.

To be willing to inject Botulism into your head positions someone as desperate. The idea frightens and sickens me, and somehow, I cannot WAIT until March - when I will have health insurance that will cover the procedures. And truthfully, I would eat raw, stinking cow dung if it came with the promise that I would not be attacked with a migraines. But medications have a dubious success rate, and my body is so ravaged by the pain that it converts it into seizures. I can literally NOT handle the pain. 

This post may seem to ramble, but the message is this: Migraines are real, chronic, devastating, legitimate, physical illnesses. Those that suffer from migraines should not also have to suffer the stigma that comes along with them; they should not be branded as weak, attention-seeking, or crazy. They should be respected for the strength it takes to move forward in life being shadowed by the presence of pain, and supported by those that approach them with understanding and support. I am lucky in that many people in my life understand and support me, and unlucky that their support comes from first-hand experience. 

To Queen Migraine, we are all just humble servants. And one day, if you're lucky enough to live without them, she will find a new servant as a plaything, and you will wish you had been more compassionate and understanding. But, for those of us that fight to live life under her sovereignty, we will be there to help you make sense of it. 

Checking Out

"The greatest evil is physical pain." - Saint Augustine

From my best girls, Courtney and Ginger Spice.

After four days in the hospital, I was finally released. And spent yesterday shuffling to my neurologist's office, and dealing with yet another brain-curdling migraine, that resulted in yet another seizure. I'm spending the next two days in my bed, trying to recover from my hospital stay, and reconstruct my brain to a somewhat functional level of consciousness (no LOL's, please).

With a nursemaid like this, who could be sick. Really.

But let me finish my hospitalization story. After many simple partial and absence seizures, the epileptologist, Dr. Christos, came to explain the results of the EEG. For the millionth time, the results showed no evidence of recognizable physical changes (hence, the problem in my brain is not electrical). But that itself may not be entirely true, says Dr. Jesus (with long hair and a name like Christos, it was inevitable). The grand mal seizures were not captured on the EEG, so it is possible that I am having both non-epileptic AND epileptic seizures (more about that coming up). 

But in the absence of physical evidence, I was preliminarily diagnosed with Psychogenic Non-Epileptic Seizure Disorder (PNES), a condition where your body converts physical or psychological pain into seizure activity. In my case, my continued and unrelenting migraines have pushed my brain "over the edge", to the point where it can no longer come to terms with the pain and just wigs out. Furthermore, the onset of PNES often coincides with two things: an epileptic seizure in childhood (like the seizure I had when I was five), and a recent traumatic event (like my parent's divorce). So, #nailedit.

But I got to GO HOME. Amazing. I was able to shower, change my underwear, lay in my own bed, and resume some kind of normal life. Of course, the following day (wednesday), I had to see the seizure specialist at my neurologist's office to begin a treatment plan, but with a clean head of hair and an operable diagnosis, I was feeling BETTER.

Before, covered in heart monitor welts and bandages. 

After, with clean everything. 

So, wednesday brought my visit to the quirky, but wonderful seizure specialist. She confirmed a probable diagnosis of PNES, but is concerned that the lack of grand-mal seizures captured by the last EEG doesn't rule out Epilepsy. So, two days before my wedding, I get to have electrodes put back on my head to try and have a big, big, seizure. 

Dirty hair again. 

But, in the meantime, the problem is being attacked by something other than heavy narcotics that have a tendency to create migraines that are even worse than the ones they're supposed to treat. I am on a preventative medication, Maxalt (also known as rizatriptan), and will continue on Kepra until there is evidence of epilepsy (or not). I am also going to start a botox regiment when my insurance will cover it, so I stay forever young, and to help the chronic migraines. Both epileptologists suggest that by controlling the migraines, I will have a much better chance of controlling the seizures.

And that's where we are today. Oh, and never let a smooth-talking nurse talk you into the flu shot when you're down and out, because you will definitely get the flu. So, cheers to adjusting to new medications while having the pseudo flu. Swell times.

Here's more info on what I maybe, possibly have.

Admitted: Part 2

"There are things in that wallpaper that nobody knows about me but me". 

The Yellow Wallpaper

Well, I'm here - my room with a view (of an enormous parking lot, and a highway, albeit). "Welcome to 4 South" reads my white board in Room 4417, which I share with only Nova (my new pink teddy bear), and my video EEG machine. Finding out that I have my own room was like finding out that I didn't have a third roommate assigned to my dorm room in college, or like finding a unicorn. 

Everyone has been SUPER wonderful, and super nice here; even the nurses in the jammed packed ER. But my nurses in 4-South have been the bomb. My evening nurse yesterday watched a little of the PBS nature documentary with Thomas and I after my first seizure of the evening, and rubbed my hand as she slowly injected me with the Ativan, so I didn't zonk out into "la la land." My morning nurse was so compassionate when she witnessed my second seizure early this morning, even while she looked a bit stunned when I "woke up". My daytime nurse hauls ass whenever I call her on my remote (but I feel a bit bad for her as she always looks a very scared as she walks in) and was nice enough to hold all of my equipment as I changed my clothes in the bathroom, and listen to me ramble about my wedding. Speaking of equipment...

Tres, tres chic.

Tres, tres me.

No, I did not hit my head. Yes, I am making a fashion statement. But more importantly, I am being recorded all the time, both my brain and myself, via video EEG. I have never seen anything cooler than this piece of equipment, and am relieved to have it applied this a.m. (since the storm last night might have delayed it's application, since the neurologist comes up from NYC to perform the tests). So we now have movement in a forward direction, and I get to watch my brain (even though it's behaving now). 

And I will have visitors soon, which is really exciting. The medications make me a bit woozy and weird, so I might be both of those things as people see me. And it's been super challenging to grade papers, but I'm hoping that I'll be able to do some later this afternoon. And I contacted all my wedding people to try and make some last minute wedding plans happen, even from the bed of a hospital room. I'm trying to do what I can, staying positive, and waiting until I have news or visitors. Oh, and Downton Abbey tonight makes everything better (score for having cable!). And "High School Musical 2" is on Disney Channel, so I can watch it without Thomas literally putting him to sleep next to me (in between eye rolling and groaning). #sorrynotsorry

Maggie Smith owns my life.

Admitted: Part 1

To no one in particular, please panic.

Welcome to #blizzardgate2016. I am watching the "epic" (most overused word of 2026) catastrophe unfold sitting next to Thomas, while he enjoys an unexpected Saturday off. No, my hubby-to-be in exactly 2 weeks isn't reaping the quiet benefits of a gifted snow day. Rather, he's reading "Rolling Stone" in a puke green recliner as I rock in and out of sleep on the hospital bed next to him.

This guy is a champ.

Today, we're back at Orange Regional Medical Center, after managing to stay away for almost an entire month. After a long and difficult friday workday, punctuated by pendulum swings in mood and cognition, I suffered several seizures late in the evening. In fact, for the first time, the ringing in my ears seem to have directly initiated a seizure, one that brought about auditory and visual hallucinations, along with massive interruptions in articulation.

Thanks to said seizure(s), i was convinced Thomas and I were going to be ax-murdered by the man standing in our door, who was also the devil, who had come to drag me to hell. At the point of hallucinations and a complete breakdown in language and vocalizing my already garbled thoughts, the time had come.

And so, at 1:15 am, I was hurried through triage and surrounded by a plethora of doctors and nurses drawing blood and our medical narrative. And after a very long night speckled with seizures, during which my father visited allowing Thomas the time to sleep, the decision was made to admit me for testing and monitoring. It's probable I'll be here for at least today and tomorrow, and maybe even into Monday.

New fashion trend? Or desperately seeking icepack?

And the testing hasn't even started. I'll be monitored by the epilepsy specialist here, who is said to look like Christ (whose name is Christos), and is the best in the ares (heard that before, but ill a try at optimism). For now, we wait until (hopefully) they catch a seizure on the EEG I will have to wear for 2 days.

And I'm getting married in two weeks, planning a romantic lunch date with my betrothed of moderately edible hospital food, and trying not to freak the F out about money and work. But I also had my first post published on "the Mighty", and didn't realize how critical feeling some sense of agency would be at this moment. While my extraordinary fiance and awesome friends are lifting me up, feeling as though I have a story that is valuable and useful makes me feel like like I serve a purpose.

Nova, the teddy Thomas got in the gift shop for me 💟

I am scared, but I have the unique opportunity to encounter that fear with agency, love, and humor. And I'm blessed to be able to still have a voice, and the means to share my story with this brave community.

The Big, Big Ring

Just having a little fun.

For the past several days, I've been experiencing something I like to call "the big, big ring" (mostly because I think the above song is super dope, even if the grotesque and obnoxious Miley Cyrus is involved in it, and am co-opting it for my own purposes.) Also, talking about somethings as bizarre and annoying as constant ringing in my ears seems somewhat analogous to anything Miley Cyrus has ever done. It also makes it way less scary. 

I appropriately hate myself. 

But seriously, this "big, big ring" is WAY annoying. It comes and goes at a steady, dare I say rhythmic, pace. But whenever the ringing starts, it feels like someone simultaneously chucks my brain into the ocean (salt water, obviously) while jiggling my head so that my vision gets warbled and my words garbled. I look and sound completely intoxicated, which makes me look and feel totally sane. Ironically, the closest thing to this I've ever experienced is one time when I got profoundly drunk and wound up in the ER (sometimes, we're young and stupid). But even alcohol poisoning doesn't come close to replicating these symptoms - they are just so strange. 

This is probably true.

There is some speculation among neurologists that when ear ringing accompanies a seizure disorder, one of two things might be happening. One (dark) possibility is that the patient is experiencing a simple partial seizure during the duration of the ear-ringing. According to Epilepsy.com, people who have a head injury (I've only had about five from grand mal or secondary generalized seizures over the past two months) are more likely to experience simple partial seizures, and that during these brief (usually 2-minute long) seizures, the individual is fully awake, alert, and able to interact. Overall, this seems like a pretty accurate description of what I experience. Another invisible seizure. 

But others suggest that ear ringing can also be an aura, or warning, or a more profound seizure episode. In fact, simple partial seizures can also act as auras for other seizures. So, that's a bit of a chicken/egg issue.

Love this guy. 

Needless to say, my seizure survey continues. I can now, probably, add simple partial seizure to the list of the types of seizures that I've had, including grand mal, absence, atonic, secondary generalized, and post-ictal (which is not considered a seizure type in all medical circles). My brain is clearly a hot, hot mess.

They say knowledge is power. They also say Google has turned us all into doctors. I want to meet this "they." But here's the thing, there's such a dearth of quality health professionals, that you have to become your own doctor and stalk doctors to get the help you need. And with seizures constantly showing their new and shiny faces, I can't live on their time, unless I want the big, big ring to turn into an alarm clock I can't shut off.

Brace Yourself and Drop it Down

"We must learn to be content as we are." - Downtown Abbey

Tuesday night, at some point in the evening, I had a very large seizure. It was, quite possibly, one of the most frightening seizures yet, even though I was unconscious during the episode, and Thomas didn't note anything astonishingly different about it. It was the aftermath of the seizure that presented both familiar (and horrible) and new post-seizure symptoms. Because my body contorted in such a way during the seizure, my wrist was pinned to the wall and bent back for the duration; I believe it's just a sprain, but because it hurts like a MF'er, I'm all braced up.

I'm so freaking sexy. 

But what was way worse, and of alarming note, was the saliva. So, so, SO, much saliva. During the seizure, Thomas said I drooled to the point that he needed to move me, even though seizure first aid suggests you don't move someone during a seizure episode, so I didn't self-aphixiate. In fact, we had to wash all the sheets because of the seizure, which is super fun to do at night. Immediately after the seizure, I couldn't swallow my saliva fast enough, so I had to spit out the extra saliva into an empty bottle of apple juice, which is super attractive.

The post-seizure episode enabled the excessive salivation to persist, even into wednesday and today. I believe that I had a post-ictal seizure, which seem to be known for excessive salivation, along with the other cognitive issues I dealt with throughout the episode and in the post-seizure phase (like loss of focus, zoning out, not being able to articulate/access thoughts, etc).While the salivation grew less intense (as I don't need to carry a spit cup anymore), I'm still finding myself having (to this moment) to constantly swallow, which is worsened by the open sore on my tongue (which I bit during the seizure).  Eventually, I fell asleep, after oscillating between considering going to the ER and subsequently convincing myself not to. 

After a day of enormous shifts in cognitive functioning and mood on Wednesday, consistent with working my way out of a post-ictal seizure, I spent the day coming in and out of headache induced absence seizures. But, I thought conditions were improving. I had the luxury of being able to rest at home, and not climb up the streets of Poughkeepsie to get to work. I even made contact, and an emergency appointment, with my new neurologist the "Seizure Specialist". I took all of these as positive signs of progress, and that was my first mistake. 

That's the thing about a seizure disorder; with every step forward, you can take a few steps back. The balance of life can always be off balance, and that's a great way to describe my day today. I woke up at 6:30 a.m. with an aggressive migraine, and was overcome with fear about what would happen because of it, as my seizures are triggered by migraines. Hence, I took my doctor up on her offer of extending my note out of work until I felt back to "normalish" and rested at home. I took my medications, and the migraine gradually lessened in intensity, but never *quite* went away. And I knew that was a bad sign. 

I had two drop attacks this evening, which aren't necessarily aberrant in my seizure disorder. And yet, these two were vastly different than the usual drop attacks (which is unfortunately not a paradox, because seizures are the new normal). With these drop attacks, it was, as if, someone literally turned the lights off on my brain, and I woke up in pain on the floor not remembering how I got there (but not completely shocked by it either). The first seizure happened at around 6 pm, and I collapsed in my bedroom, hitting my knees and slapping my hands on the tile floor. Hence, my right hand is now even more injured. The second attack, which happened at around 9 pm, resulted in me hitting my forehead on the door frame, causing me to fall to the thinly carpeted floor of the living room, landing on the left side of my neck. I woke up MUST faster with the second seizure, which I suppose is a good sign, but my head is still (still throbbing). 

And that's the end of my three-day seizure survey. I feel like I've literally been through the wringer, and I look like it too. I'm covered in bruises, and will most definitely need to be casted for work tomorrow, so I'll be able to type at the impressive 10 words/minute rate (speculation). And yet, in the midst of all of this chaos, I managed to get my marriage license, grade some student work, and do the necessary evening wedding planning and crafting with Thomas. I also slept A LOT. And watched A LOT of tv. And stared at the dog A LOT. I think things are getting weird between the dog and I, because he seems really over my existence. We spend too much time together, I guess. I'm very excited to go back to work tomorrow, because even though it kills to type with my busted wrist, at least I get to feel like a contributing member of society again. 

Because This is Another Way to Say It

Looking Both Ways

Every two hours in the U.S., a pedestrian is killed by a car. Moreover, "Pedestrians are 1.5 times more likely than passenger vehicle occupants to be killed in a car crash on each trip," according to the CDC.

When we are just young children, (hopefully) someone teaches us to look both ways before crossing the street. After all, as we grow into bigger children, and eventually real-life adults, we find ourselves face to face (metaphorically, of course) with automobiles almost constantly.

The definition of pedestrian is, "a person walking on a road or a developed area". Duh, right? But the adjectival version of the word is of particular note; "lacking inspiration or excitement, dull". I suppose there is something very pedestrian about being a pedestrian; watching the world whiz by in its fast cars while you slog on an uphill battle moving ever so slowly towards your destination. And that's what I'm getting at, the first definition contains an active verb (walking), but being a pedestrian (at least to me) implies a reduction of agency.

Not to be confused with hyperbole, what I'm doing is setting up the metaphor, and luckily we've arrived (kudos for staying the course). When you have a seizure disorder, especially one that remains uncontrolled and undiagnosed, you're ever so pedestrian in both definitions; your life becomes a boring pattern of consistency punctuated with horrific moments of complete loss of pattern, overwhelming fear, and complete desperation. You cannot take the wheel because you're literally not allowed to drive, but also, because you're too afraid to go.

That is what life is like for me. That is what I wish my neurologists that treat me like a number understood. That is what I wish my neurologists nurse understood when she took the five messages for my doctor that weren't returned because my case was obvious not dire enough. That is what the people that believe I am faking my seizures could understand; because no sane, competent, reasonable [insert any synonym for breathing intellectual being] would ever fake such complete humiliation.

Life for me is like crossing an intersection, looking both ways, and knowing that I might still get hit by a car. When you have a seizure disorder, you could have a seizure anywhere - in the middle of the mall, in a public bathroom, in the shower, walking to work, on the train, while cooking, and while at work. Your seizures can cause minor harm (like bruises, cuts, and body pain) or could kill you. And that's just the seizure itself; the environment in which you have the seizure can intensify the injury tenfold, or even be fatal in itself.

Today, I was afforded the opportunity to be completely and utterly humiliated after busting open my lip on the bathroom sink at work, after trying desperately to keep my seizure private and hidden away. Choosing a concrete bathroom was a very poor choice, but I have tried to keep the ugly underbelly of my seizure disorder my dirty little secret,oftentimes compromising my personal safety to protect  my professional reputation. Today, though, with my mouth dripping blood, my entire body shaking, and my head vibrating so violently that I couldn't orient my field of vision, there was no way to hide the truth written literally all over my face.

Today was a painful, painful reminder that my attempts to control this roaring lion of a seizure disorder are laughable imitations of this thing I used to call control. I'm only doing it to try and protect myself from the fear that shadows the seizure disorder - the fear that I could literally die from a seizure, perhaps my next seizure. I could have one tomorrow, crack my skull open, and die. I could have one in three years, and after three years of seizures, my broken and fucked up brain could go so haywire that it never comes back. And that would be the end of my story. Finis.

I came across a meme that said the slogan of epilepsy is "carpe diem." At the time, I thought the meme was a bit amateur. But sitting in my bed with Angelina Jolie lips and swollen eyes after literally sobbing through a conversation with my neurologist's nurse, who had the gall to tell me "not to get upset"; I am overcome by the quiet truth of the idiom's application. If you asked me yesterday what I thought my Tuesday would look like, I would've spouted off the list of tasks I needed to accomplish at work - an afternoon in bed with my ears ringing like Christmas bells and a swollen upper lip would not have even occurred to me.

And so I don't know about tomorrow, or the day after that, or the day after that. And in eighteen days, I hope that I will be able to have a seizure-free wedding, but I don't know about that. And in a few years, I hope to have a seizure-free child, and eventually, a seizure-free life. But I don't know about any of that.

What I do know is that I have the choice to fight back or to feel sorry for myself. Believe me, I don't always fight back. After an afternoon of feeling very, very sorry for myself, I can admit that I am not the strongest or the bravest. But I also know that I wear an invisible bomb strapped to my head, and there's some phantom that holds that controller that I might meet one day, and it would suck very much to have a list of regrets should that day come. Every day is another day where I don't have to kick that guy in the balls, and more importantly, a chance to get better and have the seizure-free life that has to be possible,. So I will do what my wise and compassionate coworker advised, I will be my own advocate (for real this time), bring my hunky hubby and notebook into my appointments, and sit my brain-addled tookus on the chair and refuse to leave until I have the promise of progress. Because every life is a story, and every story is worth telling until the very end - and I am not done yet.

Behind These Palace Walls

Why shouldn't I fly so far from here, I know the girl I might become here, sad and confined and always locked behind these palace walls..."

When I was a teenager, I remember having the crystal clear thought that I wanted to avoid having to drive until I absolutely had no other choice. Well, I was able to maintain this stubborn avoidance until sophomore year of college, until I was undone by one kidney stone while living in on campus and was forced to move back home. After the hurried purchase of a forest green used Cavalier, and a summer of painful driving practice, I took (and aced) my driving test, and was a registered driver in the state of New York.

And it persisted in this fashion for several years; eight to be exact. Eight blissful years of freedom that I certainly didn't understand before I had it. I held the potent ability to make my own decisions about how to spend my days outside of my place of residence. The world truly was my oyster. I could go buy tampons without the embarrassment of asking my dad to drive me.  I could buy myself food, whatever I wanted, because I drive and get it (and don’t feel comfortable eating in front of people if I have a choice). I could purchase wine without the scathing judgment that seems to sweat off my loved ones.

We're both super bored.

Now, the world is my fishbowl. My cat and dog are like two fighting beta fish, and I’ve got a front row seat to the action (it's sometimes the only action I see). And that's mostly hyperbole; my dog and my cat both spend the majority of every day sleeping, and my fiancé spends the majority of his time working, so I spend the majority of my time binge-watching Netflix, and waiting. I scarcely know what I’m waiting for, but I can palpably feel the waiting as it blankets my waking life. I spend a lot of time sleeping, because I'm so tired of the waiting. 

I don’t mean to sound overly dramatic, but it’s a fundamentally changed existence – one that was forced upon me by hideous conditions out of my control that in themselves are difficult enough to cope with. Having epilepsy takes away your fundamental right as a human to exercise control over your life, snatching away time, memory, and sometimes, even dinner plates.

But it also makes you paradoxically agoraphobic and cabin-fevered. You’re always dying to have the ability to act with agency, to drive to places and take back control of your ife, but you’re afraid of people seeing you have a seizure. I deal with this fear, in my own way, every day. I wake up and go to work because I love my job, and because I refuse to give this part of my life away. But when I’m walking from the train station to work, because I have to take public transportation, I’m afraid that a strong gust of wind might stab me with a potential seizure; that the growing winter chill might sneak up behind me and knock me over, and I'll wake up confused, without a wallet, a laptop, or any memory of what happened. 

And I’m afraid of having friends see me having a seizure, because I know how awful it is to have no control, and they wouldn't be able to help at all. I myself would be horrified if one of my friends starting seizing in front of me, and I have seizures. It’s immensely disturbing to witness, as Thomas has said, and it’s incredibly depressing to feel the weight of self-imposed alienation, the alternating love of your friends with the shame of a seizure disorder and the desire to protect them from yourself.

I try to end these posts on an affirmative, if not happy note. I try to boast of resilience in the face of adversity, and courage when faced with fear. But an idiom, like all language, is just a string of words infused with meaning that we create. If you don’t believe in the meaning, or if you believe you are somehow exempt, there is no way to distinguish it from the litter you see along the back streets of Poughkeepsie. And there are days, like today, when I feel like my brain is full of litter.

But, my brain partially feels like litter because, after weeks of prodding and begging, my neurologist in waiting (before I see the "seizure specialist") gave me a new medication, Topamax, that treats both seizures AND migraines. I am super optimistic about the medication, even though the adjustment period is terrible. I feel like I spent this morning with my head under water, and needed about thirty cups of coffee to emerge and think like a functional human. But, I feel different and more cognizant. I have experienced headaches in the two days I've taken the Topamax, but they've dissipated quickly. I had a small seizure last night, but it was quick and comparatively uneventful. While I'm on a slow taper onto the medication, and can absolutely definitely not drink at all at my wedding (because mixing alcohol and the medication can be deadly), this is the best thing to happen to my brain since excedrin migraine however many years ago. 

There is a light at the end of the tunnel, and when I'm not quite so loopy, I'll be able to appreciate it more. Until then, adios. 

Welcome to crazytown.

An Open Letter to my Fiance

For Better or For Worse (post-seizure).

Dear Thomas,

Our wedding is 26 days away. Last night, we picked out the song that we would dance to at our wedding, as we prepared for a week of wedding fueled adventures (like cake tasting, DJ discussions, and our last meeting with the Reverend that will perform the marriage rite at the wedding ceremony). You begrudgingly humored me, in my stubbornness, allowing us to dance our first dance as husband and wife to "Beauty and the Beast". You were indignant, charmingly so, because you assumed everyone would think that you were the beast, and that the song would somehow be a condescending representation of you, despite the fact that most people in the room will be touched, if not crying, by the sheer profundity of both the song and the love that will be radiating from us.

I can get to the place where I understand that your point is valid (or, at least get why you'd think that). I'd rather you not think that you're the beast in this relationship, and certainly not in our marriage. The song is suggestive, and the story is certainly a "tale as old as time"; girl meets beast and fixes him into a prince charming of her dreams (complete with full hair, deep eyes, and all of the muscles). But Disney movies are meant to boil down life into perfectly sculpted collections of tropes, lacking the nuance and complexity of the hard truths that life throws at us. People have joked with us, saying we're a real life Disney movie, and maybe that's true. But we're also VERY real.

My darling, you are not, nor will you ever be a beast. Not to anyone, but certainly not to me. In my epic seizure last night, in which the porcelain plate that held your mom's delicious dinner shattered on the carpet and cut my hand (making me leave a puddle of blood on said carpet), after you held my head still as I foamed at the mouth, and after you and your mother washed my hand as I lay semi-conscious in your late grandfather's recliner - I was so much more of a beast than you could ever be. I've been known to grunt, bleed, and foam at the mouth when I'm having a grand mal seizure - I'm certain rabid dogs are described identically to me in these moments. And yet, as you cradled my head in between your knees, you were there for and with me, even as your best guy friends had dinner with your family upstairs.

I have 26 days to consider how, in our wedding vows, I will be able to articulate the kind of man you are. No one saw this seizure disorder coming, and yet, even as you struggle to express your difficulty facing it with me, I have never once doubted your sincerity, trust, or concern. Never once have I felt judged or unsafe - I felt nothing but love from you, even when I was literally the least convenient person to be betrothed to.

I cannot tell you how important a support system is to battling a chronic illness. On Friday night, I literally dreamt about handing a blade to someone I greatly dislike and asking him to slit my throat because the pain was brutalizing me without any promise of relief (after taking Percocet, Bubital, and Excedrin throughout the course of the day). But then I remembered that I had someone worth fighting for, and a future that I could believe in.

If there is a beast in the room, dancing with us after we vow to love one another for the rest of our lives in sickness and in health, it will be my seizure disorder. And it will still be a part of our lives on February 7th, and it isn't something we can just will away. But together, because of love and courage and the promise of a future, we will fight - and there is no one else I'd rather fight for than you.

I love you Thomas. I can't wait to be a Weikel.

Love,

Your Brain-Addled, Smitten and Super Excited Fiance.

P.S.

There's More Love Out There

"Smile, the Worst is Yet to Come...

...We'll be lucky if we ever see the sun."

"Studies suggest that epilepsy fails to come quickly under control with medicines in about one-third of cases, but the true frequency depends upon the definition of uncontrolled."

 The above quote is just a snippet of a much longer article and much larger conversation about what 1/3 of patients diagnosed with epilepsy experience called "Refractory Epilepsy" (see below for the link to the article). According to the medical discourse surrounding epilepsy, it is certainly the worst form of epilepsy (aside from the pseudo diagnosed/waiting in limbo kind that I'm currently experiencing); the type the article labels a "heavy burden."

Essentially, Refractory Epilepsy is diagnosed when an individual's seizures are not controlled by medications. The bad news: only 5% of those diagnosed with Refractory Epilepsy will get better (through either finding a medication that works, or alternative therapies). This form of epilepsy is also called "drug-resistant" epilepsy, even though a diagnosis can be made as early as after only two failed medication therapies. I myself would call it, "drug-avoidant" or "I can't get in to see my doctor until freaking March."

Not to bore you with rhetorical analysis, or betray my growing need to be defensive, but the article then makes an interesting tonal shift. Moving from a predominantly expository/informational article (with an argumentative undertone that posits that only the discovery of better medications and a cure will truly help those with any form of epilepsy), the piece grows investigative (and dare I say, interrogative) in its tone and content. In my opinion, the article becomes a somewhat aggressive critical examination of any epilepsy diagnosis. In my experience examining this discourse community, this shift usually indicates a lack of understanding of the illness, using the argument that you're just incorrectly diagnosed so doctors don't have to admit that they don't know what's going on. The article even goes so far as to use this sinister anecdote,

"Imagine coming home at night after too much partying, and finding yourself unable to unlock your front door. One possibility is that you are at the wrong house.  Another is that you are using the wrong key. Or you really may be locked out. Perhaps someone inside has engaged the deadbolt. Refractory epilepsy displays three similar categories."

Okay, in fairness, seizure activity does not necessarily mean an individual has epilepsy, that much I will admit. And yes, as the author suggests, other conditions can mimic epilepsy and cause repeated seizures. Citing that 13% of patients in England are incorrectly diagnosed with epilepsy, Dr. Fisher (the article's lead author) makes a valid point - a doctor's understanding of a patient's condition, and the choices made by the treating physician in treatment therapies, are penultimately important in that patient's recovery.

Hence the quotation that starts this post - the definition of "uncontrolled". It's an interesting and thankless riddle to ponder, especially in the wake of a seizure disorder. Having even one seizure replaces bodily control with some horrible other thing - a devastating intellectual and physical loss of the self you've become. Hence why so many individuals with seizures experience psychological disorders, like depression and anxiety. In a world in which we have to take on so many roles each day and perform such a complex juggling act of professional, mother, student, wife, etc. - the loss felt by an individual with seizures is amplified by the fear of what is necessary to get through each day.

For the last three days straight, I have experienced UGLY seizures - the ones where I lose control, lose consciousness, and lose chunks of time (hence why I haven't been able to post a new post in some time). It seems as though my condition is indeed not responding to the medications, placing me in a perpetual state of fear, and forcing me to investigate Refractory Epilepsy. The migraines and back pain persists even with the "excedrin on crack" (and since my seizures and migraines are interwoven, with uncontrolled pain comes uncontrolled seizures). I am trying to limit the use of narcotics, since I don't have many Percocet left, am fighting for health coverage for this month, and am not sure that my doctor will give me a refill, since I had to follow up with her nurse twice since my ER visit, and have still not heard back.

It's past 5 a.m. I've been awake writing this post for over an hour because I wake up in pain at 4 a.m. every day now. I sit in my old man recliner, sometimes forcing myself to wrestle with the pain and try to sleep, sometimes just staring at the clock as it draws me closer to the start of my day. But today, I choose to ponder this idea of "uncontrolled". If control is an illusion, if that idiom bodes true for those of us not dealing with "uncontrolled" seizures, then perhaps "uncontrol" is just as much of an illusion. Perhaps we are all just waiting for the right thing to miraculously appear when we lose control, so that we can convince ourselves of the fantasy, in a world that demands rigidity and self-control. As zen as it may sound to abandon the fantasy of control and reject its power, perhaps I am only able to be so zen because I've run out of energy to feel anything else. Perhaps I am only able to accept "uncontrol" because this form of epilepsy, refractory or not, is forcing my hand.

Go Here for the Whole Article

Time is inching me closer to the start of a day at work, where I will be expected to perform pretty complicated invoicing, while planning an event and developing a social media schedule for a client (along with sundry other tasks). This does not include making phone calls necessary for the wedding, which is less than a month away. And teaching, grading, communicating with students, all while heavily medicated and exhausted. This is a daunting list on "normal" days, which in themselves are something of a chimera. But today, after a seizure last night, followed by 5ish hours of sleep - I'm going to make it work, because that's my job. But my chilly walk to the train will inevitably feel like a great accomplishment. Until then!!