People Are Horrible (But Also Good Lots of the Time): Epilepsy in the News

This will be short, but since I think it’s important, I wanted to be sure to write about it before it was no longer topical.

As the title of this post would suggest, an epilepsy-related story has been circulating over the past few days. In fact, it made the virtual front page in some outlets, the New York Times’ web site included. I can’t comment on its placement in physical newspapers given that I haven’t checked; however, let’s just assume that it was in a prominent position in the most reputable of them.

I know what you’re thinking: what could be so momentous as to warrant such media attention for a condition that remains perpetually, and frustratingly, under the radar?

For your benefit, I’ll summarize, inadequately, the NY Times article about the case. If you can access the article (darn pay walls), you should go ahead and read it in full yourself since a) it’s good and b) my less-than-sharp brain will inevitably miss key points. Note that I preface what follows with the obvious disclaimer that everything I write regarding Rivello and Eichenwald is biased by the fact that my worldview and medical experiences are significantly closer to Eichenwald’s.

In short, John Rayne Rivello, some dude with issues and strong political views, used Twitter to send an animated image containing strobe effects meant to trigger a seizure to Kurt Eichenwald, a journalist (with political views opposing Rivello’s) who has been open about his epilepsy. After clicking on the GIF, Eichenwald had a major seizure. The FBI and the Dallas police investigated and have now arrested Rivello with the charge of criminal cyberstalking; as stated in the linked article, the Justice Department affirmed that “investigators found evidence of the plan to attack Mr. Eichenwald from a search of Mr. Rivello’s Twitter account.”

It’s horrifying to think that it would occur to even the most terrible among us to use someone else’s chronic illness as a means of attack. And yet as reported in that NY Times article that I keep quoting, Eichenwald has “said that since the Dec. 15 message, 40 more accounts have sent him strobe light images.” 

People are the worst.

But justice is in the process of maybe being done, which is pretty nice. And this is probably good for epilepsy awareness, so there’s that. (Yes, this is positive thinking, me-style.) There’s something else, too, that I’ve taken from Eichenwald’s story as it’s been reported thus far. I’m too tired to blog about it right now, though, so you’re going to have to wait until next time, or the time after. The suspense! #worstcliffhangerever

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Blurry thumb up for justice and epilepsy awareness! Unmanicured thumb down for people being horrible.

 

 

 

One Step at a Time (but Really): First Visit from the Physiotherapist

Last Friday—yes, I’m a little behind on my posts—a physiotherapist came to our apartment to help me learn how to be less terrified of going down the stairs and do simple exercises in order to become a little less deconditioned after two months of doing almost nothing but chillaxin’ (i.e., lying in a hospital bed).

From the moment he called to schedule the appointment, I had a feeling we were going to be a good patient-medical practitioner match; there was just something about his particular brand of businesslike friendliness that I admired. And let me tell you, he did not disappoint. First, and this shouldn’t matter, though it totally does, he’s an adorable dork. It’s just a fact, so it’s OK I let the world know. Second, he was super professional. For example, he gave me a whole bunch of pamphlets from his organization, all in a very nice folder: I haven’t read any of them yet, but I plan on doing so, and I’m sure that after I have, I’ll feel even better about his professionalism. Third, and arguably most importantly, he’s very good at what he does.

After doing an initial assessment and prioritizing my issues, he decided that before all else, we should tackle the stairs. “The pattern for going down is as follows: left foot, cane, right foot. Can you remember that?” he asked. I nodded. Noting my hesitation, he made me repeat the instructions back to him and then corrected me, in the kindest manner possible. “I’ll repeat this before we begin the climb, but when we go up, we’ll do this: right first, then left and cane together. Got it?” Again, I nodded. Again, he asked me, gently, to repeat what he had just said.

And then we were off. He stood two steps in front of me, informing that I should always have a “helper” in that position. “Ready?!?!?” he asked, his enthusiasm contagious. No, but yes! I could do this! Right foot, cane, left foot. I was a stair pro! I could do all the stairs, even if he had clearly told me not to test my limits!

I stepped down with my left, holding the bannister, then paused, suddenly sure that I would tumble down head over heels and that he would fail to catch me and that I would face certain death, especially since my skull is still weakened.

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Our stairs. You’d balk too if you were me, wouldn’t you?

That’s when I heard it.

“You’re doing fantastically! One at a time!” the dorky physiotherapist (on the very off chance you’re reading this, amazing physio: sorry, but please know that “dork” and its derivatives are among the most superlative compliments I know how to give) cheered me on. Magically, I kept going, feeling more confident on our stairs then I had since getting home. Though I had practiced with the physiotherapist on the staircase in the hospital, the stairs leading up to my apartment are much steeper, and it seems like there are so, so many of them. It’s daunting, anyway, for someone like me, who grew used to navigating the same 100 square feet of flat territory, and only a few times a day. Nevertheless, I got halfway down with this new left foot-cane-right foot pattern before we decided to turn around and go back. The return trip went equally smoothly, if painfully slowly.

Before our time was up, the physiotherapist assigned me an exercise to do before we met again, a half-squat thing to be executed in sets of fifteen while holding the kitchen counter for support, and wrote out instructions for everything he’d taught me in the most beautiful penmanship I’ve every seen in my entire life. He’s coming back tomorrow. Having practiced exactly the right amount, not too much, not too little (it was stressed to me that I would lose marks if I overexerted myself), I’m ready for our second session.

 

Homecoming: Adjusting to New Rules, Eating Lots of Pitas with Melted Cheese

So, as the final word (“home”) of my previous post made clear, I’m now, well, home, and have been for eight days, if my counting skills aren’t betraying me—a very real possibility. And don’t get me wrong: it’s great. Sleeping in my own bed after an additional three weeks of a hospital-bed-mattress slumber is an incredible feeling; I can now eat whatever I want (well, within reason) and use my favourite household device, the microwave, mostly to melt cheese onto my pitas; nobody interrupts whatever I’m doing to check my vital signs. In other words, I’ve got a near-utopia situation going on here. 

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Arguably the more important of the two ingredients of my favourite dish, Pita with Melted Cheese.

You probably noticed the “near” preceding that “utopia” before the giant pita pic. You have to give me a break here: when one’s existence is characterized mainly by sleeping and microwaving, it’s not unreasonable to expect a catch or two.

My main one, at this point in time, is the list that the occupational therapist at the hospital put together for me to follow upon discharge. It consists of reasonable, pragmatic, safety-related guidelines—for example, I’m not supposed to go anywhere alone since I still have episodes of confusion, and I’m supposed to have someone nearby at all times. But even though I’m completely aware of how necessary this protocol is at this particular chapter in the Story of My Brain, I’m finding it a little difficult not to push back against it, especially since my independence is something I’ve tried to cling to over the course of my years with epilepsy. 

The thing is, I’m lucky in so many ways, and while my instinct is to complain about how rough my incredibly privileged life is, I think I better take a moment to acknowledge concrete ways in which it’s awesome, specifically regarding what’s happening right now. A few examples: first, my husband works from home, meaning that we didn’t need to make arrangements for daytime care—otherwise known as “daycare”—in this interval between the hospital and outpatient brain rehab. Second, we have great friends who have flexible schedules and are supportive and are willing to come to us and/or pick me up and take me to a coffee shop that’s a block or so away while my husband works or while he runs errands or goes to appointments, meaning that I’m not always sitting by myself in the living room while he’s in his office and that he can get stuff done without leaving me at home without someone else here. Third, we continue to have great family support. We’re super grateful to have loved ones, like my sister-in-law, who’s going to visit at the end of the month, who’ve made our 2017 much easier than it would’ve been otherwise.

Back to whining for a bit.

If I stop too long to think about it, things seem pretty gosh-darned hard right now. Being mostly confined to our apartment is hard. Being in a situation that’s not my physical and cognitive ideal is hard. Feeling like I’m doing “nothing” with my life is hard. Needing twelve or thirteen or fourteen hours of sleep a night because doing “nothing” is so exhausting is hard. But hey: things are much, much easier now than they were a few short weeks ago, and I trust that they’ll continue to improve. As they do, I’m (very slowly) learning that baby steps are OK.

As long as they’re really, really big baby steps. (Kidding?)

The Saga Continues Then Ends: A Spotty Blog Post (Sorry)

I’ve tried a few times to write a coherent post summarizing this most recent hospitalization and, as you might imagine, keep epically failing. And so I’ve decided to go ahead and use one of my favourite formats: the lazy ‘ol point form. Here we go.

A few of the many things that have happened since I last blogged:

  • I went through an interesting, exhausting, stressful “bump” in my epilepsy—and, by extension, real—life, and after debating whether or not to write about it, the merits of awareness, the potential dangers of disclosure, etc. etc. etc., I ate a donut (Boston Cream, in case you were wondering about my donut preferences) and decided that my mental energy could be utilized in much more productive ways than agonizing about such decisions. So then I alphabetized some stuff, probably. #OCD
  • I consumed bowl after bowl after bowl of Tim Hortons chicken noodle soup and ignored dish after dish after dish of Turkey Mandarin, among other sweet poultry recipes not requiring a knife before shovelling and swallowing and gagging a little. This is probably the best place to thank the many friends and family members who acted as soup porters/my own personal saviours, keeping me from having to consume many a less-than-mediocre protein entree.
  • I ate what is likely a record number of  Zookies (off-brand animal crackers) and got very upset when they went on sale and sold out at the Shopper’s Drug Mart in the hospital lobby. (You might have noted a food theme to these updates. Gotta refocus.)
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Note lack of Zookies (middle of bottom shelf).

  • I changed hospital rooms, again, because my private luxury suite in the EMU was needed for someone coming in with intercranial leads, and I was only being monitored there since my epileptologist felt that if I were going to be in the neurology ward, I might as well have electrodes glued to my head.
  • I had lots of visitors, for whom I am eternally grateful. Being hospitalized for three weeks shortly after being hospitalized for a month isn’t easy, and I’m so glad that I have an army of friends and other loved ones who were there for me and my husband, painting my nails, wheel-chairing me to Shopper’s Drug Mart, buying me a Batman LEGO book that I coveted, providing, as I’ve already said, endless bowls of soup, and pretending that it’s normal for a grown woman to build a collection of weird-looking stuffed toys that she loves mostly because they’re so weird.
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Collection of weird-but-loveable stuffies. My husband asked what we’ll do with them at home, and I suggested displaying them in our living room in one of those stuffie hammocks (you know what I mean, right?); I’m still working on winning him over.

  • I received amazing care, particularly from the physiotherapist and occupational therapy team, who really stepped in, especially in the last week. Due both to deconditioning and left-sided weakness, I was having trouble walking and with stairs, and the physiotherapist got me navigating the hospital lobby, though yes, full of anxiety, and, after practicing in the gym, going up and down staircases, full of even more anxiety, but who cares because I managed to climb two flights of stairs all by myself, meaning I’d be able to get up the steep staircase leading to my apartment (a major concern).
  • I had a follow-up appointment with my neurosurgeon, which probably merits a post of its own. However, since I likely won’t get around to writing it, given my current state of being, I’ll just say that it was both comforting, in that it confirmed, in my mind, that I’m under the best care, and disheartening, in that it’s very clear that I can’t have corrective surgery, at least not now. My epileptologist recently suggested a vagus nerve stimulator, and I discussed that at length with the neurosurgeon; he seemed to think that it’s a good option, especially since it can be removed if there are future advances that will allow corrective surgery to be done. My husband and I both left feeling confident that there is a path forward, even if it isn’t necessarily the ideal one. Luckily, we both love us a challenge (that was meant to be sarcastic, but I don’t know if it came across or not, so yeah, sarcasm).
  • I was discharged with a comprehensive follow-up plan, mostly thanks to the physiotherapist and occupational therapist that I previously mentioned. Although the neurology team declared me medically fit to go home, the physiotherapist and occupational therapist had some concerns regarding my ability to function outside of the hospital. Without going into too much detail, I’m still physically weak and have cognitive challenges related to seizures, my surgery, and concussions. Their recommendations for post-hospitalization included that I participate in an outpatient rehab program for people with acquired brain injuries, which I will start in a few weeks; to fill in the gap, a physiotherapist and an occupational therapist will come to our home.

And so late on Friday, my husband and I filled the trunk of a cab with all the stuff I’d accumulated during my hospital stay. Taking a deep breath, I used my cane and the handrail and climbed those stairs.

Home.

And the Saga Continues

First, I’m having a lot of trouble writing these days—locating words, typing, using simple grammar without immense effort, etc. (my personal hell, if you know me well enough), so please, please, be gentle with me if you find mistakes in this post: I’ve decided that it’s fair to blame it on the seven brain medications I’m currently taking, not on myself. [Note that my brain issues get worse as the day progresses, so I’m writing this before I’ve taken my first dose of meds.]

I’m not going to start from the beginning because, frankly, I don’t remember where I left off, and I don’t give a [insert family-friendly word instead of the one I want to use]. I might, however, repeat something I’ve already blogged about. Sorry, but is it really fair to blame someone who has had two brain surgeries and a day with twenty-one seizures in the past sixish weeks? Ask yourself that. (Passive-aggressive guilt fully intended.)

But anyways. I spent the vast majority of my time lounging around in a semi-private room during what could be described as the worst holiday ever (slight hyperbole). My roommate was an elderly woman who I actually had a soft spot for, even though she seemed to think that I was a nurse and was constantly yelling at me, in very, very broken English, to call her husband and son. I began looking forward to the meal trays, the benchmarks of my day, although the food was/is disgusting and I ate/eat maybe a third of it (except for breakfast, reliable cold cereal).

Besides the puke-worthy meal trays, the main issue with the first phase of this weird hospital vacay was that every morning, Monday to Friday, the chief neurologist would appear with his flock of eager duckings (OK, residents), notebooks in hand, eagerly jotting down almost every word he said. Examination complete, they would then go to the hallway, within my earshot, and discuss my case, as if the toddler rule of “can’t see you, so you don’t exist” applied. I appreciated it, though, since I learned lots of interesting, strange things about myself. But don’t get too excited: for once, I’ll practice a little discretion and keep some of my medical info private from the public, mostly because I’m too lazy to type it out (family and friends, if you’re interested, lemme know).

At a certain point of seizure “behaviour,” I was given what was phrased as amazing news. My epileptologist had pulled some strings to get me the next room in the epilepsy monitoring monitor. Since the seizures I’d been having in hospital quite similar to the seizures I have at home, while the seizures I had with the intercranials—remember them??—were quite different, this was considered a fantastic opportunity.

The catch: I spent all of January in the hospital. After a weekish-long break, spent mostly as home, per the the neurosurgeons’s orders, I had an emergency due to which my husband called 911. What a jerk, right? And I’ve been here ever since. And all I want to do is go home. I kind of assumed that there would be a team of people to whom I could plead my case, but instead a lone, rather good-lookng (completely irrelevant to the current topic)  neurology resident came in the early morning to deliver the wonderful news. A bed had opened up in the EMU! I would be transferred later that morning.

“Quick question,” I asked.

“That’s what I’m here for,” he responded, flashing impossibly white chompers [Seizure Me’s name for teeth].

“What if I refuse to go to the EMU and go home instead?” His chompers immediately clamped shut.

“Well,” he said, slowly, “this is something you should talk over with your husband.It’s an incredible important decision.”

“I already know what his position will be.”

“Do you know where you live?” He got me there.

“Muscle memory will take me there.”

We went through stuff about paperwork about leaving against medical advice and safety and how I would just end up back in the hospital. It was then that I knew that I didn’t really have a choice.

“OK, OK.” There were those chompers again, grinning at me with the smile of victory. Success. For him, anyway. I asked how long I’d be there, and his answer was “probably not longer than last time.” So not longer than a month? How comforting. Good thing you have nice teeth, random neurologist.

And a minor success for me, in that I got a single room with a gorgeous view—the same one I had in November 2015.

To be continued…

Well, maybe.

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Current view from hospital room.

A Quick Update That I’d Rather Not Have to Make

I write this in a moment of clarity, which, these days, are few and far between. But they exist, and for that, I am grateful. (Please notice and appreciate my attempt to practice positive thinking. The current arguably lame, but very affective, thing I repeat to myself is “go with the flow.” So yeah. But I’m getting off topic.)

And the bright side of being unintelligible every once in a while due to my neurological state is that blaming me for routine typos, etc. would be pretty lame, right?  Right?!?

Kidding, kidding. Judge away. And now I write for realz.

A few days ago, my husband was uncomfortable with how things were going (read: my behaviour was becoming ever-stranger), so he called 911. What happened next? I’ll tell you, in an overly detailed timeline: feel free to skip to the next paragraph. Here goes. The paramedics came; we went to the ER after I was evaluated by the aforementioned medical dudes, transported in a shiny ambulance (note: I have little-to-no memory of this ambulance ride and am relying solely on what my husband has told me about the trip); I spent some time in the ER and saw doctors there before being admitted later that night; I slept in the ER since there weren’t any beds available in the neurology wards (a remarkably quiet sleep) before being transferred to neurology relatively early the next morning.

I’m still experiencing some of the symptoms that drove my husband to call emergency services; thus, I’ll save describing them for another day (read: I’m currently cognitively unable to do so).

I will, however, say the following: this, to sum it up in one word, sucks. I was just settling in at home after my recent month-long brain-surgeries-related hospital adventures, and here I am back in a different section of the same ward of the same hospital. (5B whoop whoop!) Though I’m trying to be positive, to be grateful for the first-class care that I’m receiving and for the support of my family and friends, I’ll admit that I have my moments. I mean, when I often can’t remember my husband’s name, or that I’m married, it’s only natural that counting the many blessings that I objectively have should assume a certain difficulty, right?

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My new (very temporary, I hope) digs.

One step at a time. I’ll get there. This will happen.

The Staples in My Head

As I write this self-indulgent blog post, there are thirty staples holding the twenty-seven-centimetre incision on the right side of my head together (yes, I counted them—my life’s pretty slow these days) and an additional three near my left temple. (I didn’t ask what they were doing there. Fixing a slip of the scalpel?)

I have no problem admitting that something about the combination of my almost-shaved hair and the hardware studding my scalp makes me feel more bad-ass than I have at any other point in my life. Admittedly, though, I didn’t go through a goth or a punk phase in my youth—indeed, my forms of rebellion were never cosmetological in nature—so I don’t have a very good term of comparison for this particular experience, which I hope I’ll only have once. If I do happen to be subjected to another major hospitalization, I plan for it to be something truly exciting, like recovering from a paragliding accident. #nevergoingparagliding

But I digress.

My reaction to my lustrous scalp of stubble, and to the sizeable crescent of staples that runs through it, has surely been made more positive by two factors:

  1. The fact that I didn’t see my hair until it had already grown out a little since it was fully covered by an enormous bandage until after the second surgery. I’m not sure what I’d have thought had I seen it in the ball-of-naked-flesh stage.
  2. The degree to which family and friends continue to reassure me that a ‘do composed of less than half an inch of hair of all one length, with utilitarian bling, suits me. I’m not sure if I should be flattered by these comparisons or not, but at least ten people have said I look like Eleven in the Netflix series Stranger Things, and several have drawn parallels between me and Charlize Theron’s character in Mad Max.

My main issue with the staples is that they produce an itch like no one’s business, an itch that I’m constantly trying to convince myself that I shouldn’t scratch. (The discharge summary/instructions for home that I was given when I was released from hospital, in fact, specifically reminded me that I was not to scratch the incision. I get the feeling that I’m not the first patient to encounter this challenge.) It’s gotten to the point that a few mornings ago, I woke up literally attempting to pick the staple nearest my ear out. My version of sleepwalking, I guess.

Fortunately, I’m having the staples removed this coming Monday, so minimal opportunity remains for me to unhygienically pluck them from my scalp in my sleep. Before leaving the EMU, I was provided with a staple-removal kit to bring to my family doctor, which I find a little strange—if my GP is equipped to deal with this task, which I’m sure she is, shouldn’t she have, you know, the equipment for it? But no matter. All I really care about is that four days from now, the only metal in my head will be dangling from my ears.