Sweet Freedom: Epilepsy Monitoring Unit, Day 3

This morning, when the nurse came in to check my vitals (after six whole hours of sleep!), she asked me a bunch of questions to see how “with it” I was, and she asked me if I knew what day it was.

Ohhhhh, I knew. 

I knew because one year ago today, on January 21, 2014, I had a seizure while driving home from work.  That incident completely changed the trajectory of my life. 

And today, one year later, on January 21, 2015, I was told that I am being released (earlier than expected, even!) from the Epilepsy Monitoring Unit in Rochester later this afternoon. 

Funny how that came full circle, on today of all days—a good omen, I hope.   

These tests proved that I am actually epileptic.  There was a concern that I might not be—that there might be something else wrong instead, some new horror.  So that’s good.  And it also means that I don’t have to change the title of my blog.  (Whew.) 

They found that in addition to seizures, I am also having these unexplainable “spells.”  (The doctors could not describe them any better than that.  My body seems to act like it’s having a seizure, but my brain waves were not showing any seizure activity, so…?)  They want me to come back for more testing if the spells do not improve.  

Some of these “spells” happened while I was on that second medication, so I didn’t actually have any seizures while on the Vimpat like I had thought.  (Which is good news.  They prescribed a combination of Keppra and Vimpat for me to try, and hopefully, that helps.)

As for the spells, they are most likely stress-related.  (I have been a nervous wreck since I was diagnosed—I live in constant, sometimes paralyzing fear that I’m going to have a seizure, and I’m sure that has taken its toll on me.)  The doctors said that I might have to have further testing in a spells clinic someday, but in the meantime, they told me to try Cognitive Behavioral Therapy to try dealing with them.  This means I need to try talking through my problems with someone.

Or, better still, writing about them.

Yeah.  The doctors actually told me to write.

It sometimes seems like the whole universe is telling me to just…write.

So I’m going to get back in that habit, and let writing save me, and hopefully, a year from today, I’ll have some more awesome, life-changing news to report. 

 

Sleep Deprivation: Epilepsy Monitoring Unit, Day 2

I am really freaking tired.

But I’ve had 5-7 seizures, so I have good reason—seizures are tiring.  I push a button when I feel them coming on, and then a bunch of people come running into my room and ask me a bunch of questions while it’s happening: Where are you?  What’s your name?  Where’s the ceiling?  Can you read this?  (Then they hold up a piece of paper that says something about whiskey and water being a popular drink in Texas, and I have to read it aloud.)  I’ve been partially conscious during these episodes, so I remember doing these things.  It’s weird to be both aware and unable to control yourself. 

It doesn’t help that they are depriving me of sleep, too, in an attempt to trigger more seizures to collect more data.  I was kept up until 2 am and woken up at 6.  And they keep bringing in exercise bikes and treadmills and making me use them (while strapped into that stupid jumper, which is pretty much like wearing a sweat belt).  I love getting up and moving around (I am sick and tired of laying around), but I wish I didn’t have to wear the jumper/safety harness.     

1.  This is the thingy that my headdress wires are plugged into, and this thingy is hooked up to a computer.  Don't ask me how it works--I have no idea.  2.  This kind fellow refills my conductor gel and itches my scalp for me.  3.  The second drug they had me try.  (I'm not sure if it worked, though.  I had two seizures in two hours after taking it.)

1.  Getting my exercise.  2.  The "motivational" (and highly ironic) calendar in my new room: I can't move, thankyouverymuch.  At least, not without assistance, so thanks for the "encouragement."  3.  Several times a day, they make me get my "move" on--no matter how tired I am.

My Adventures as a Cyborg: Epilepsy Monitoring Unit, Day 1

So, here I sit—confined to a hospital bed for the next 4-7 days, restricted to button-down tops and blue gowns, with what feels like a thousand electrodes glued to my scalp (and hair).  I’m in the epilepsy monitoring unit (or EMU) in Rochester for an extended seizure study.

I’ve tried two (sort of three) epilepsy drugs now over the past two years, and they have failed.  Since switching to Keppra alone, I’ve been suffering very frequent seizures, but they have been minor, so I haven’t really been writing about them.  They’ve just become part of my routine.  I’m tired afterwards, but I am not convulsing or hurting myself anymore, so…?  Not a whole lot to say.

I’m here at the EMU to pursue other treatment options, to see what is possible, because I am coming to terms with the fact that I really am disabled, and that I will not be able to do much as long as things are this way. 

It’s a pretty shitty realization, let me tell you. 

I had a 7:00 check-in this morning, and hubby was my rock—I love that man.  He got me here last night, watched Downton Abbey with me and found me apple pie and ice cream after 9 pm—quite a feat on a Sunday night—and then he snuggled me to sleep in the Kahler Grand Hotel (a historical relic—the amenities reflect its age, but it’s still a cozy place).  He carried my luggage, checked me in this morning, ordered me breakfast, asked the nurses and doctors all the right questions, and he helped me to the bathroom twice (I cannot get out of this bed without assistance—frustrating—and now that they have reduced my medication, I require this contraption that looks like a baby jumper, lest I fall and sue the hospital for neglect—see pictures).  He also watched several morning talk shows with me, told me I looked like a sexy cyborg, hugged me the best he could given my headdress, and kissed me goodbye.

Sexy is a stretch, but cyborg may be accurate.  I have dozens of colored wires glued to my head and that are all hooked up to a computer.  (This is why I am bed-ridden—well, that, and in case I have a seizure.  They don’t want me to hurt myself.) That’s the purpose of this study—to have seizures.  They’re reducing my medication to increase the likelihood that I’ll have one, so they can capture my brain’s activity using this nifty headdress thingy and try to figure out what’s going on inside my head. 

I’m not sure I want to know, to be honest. 

But I must be brave and find out. 

1. Me, pre-Frankenstein. 2. The electrode headdress.  3.  Dots made by blue eyeliner to mark electrode attachment points.  4.  Gluing on the electrodes. (This smells horrible.)  5.  Finished product.

1.  Doctor's orders--I need help to get up.  Ugh. 2. Sliding my arms through the baby-jumper thingy.  3.  The ceiling track that helps catch me if I fall.  4. Bathroom selfie.  (It was very, very hard to pee wearing all these wires.)

An Apology to my Body.

Dear Body,

I’m so sorry.  I’ve treated you like shit for the last 32 years and I’m sorry.  It’s a wonder that you’re still with me. 

I’m sorry for hating you. I am sorry for thinking such ugly, toxic thoughts about you.  I’m sorry for all of the awful things I’ve said about you—in private and to others—and I’m sorry for never thinking you were good enough.  I’m sorry for comparing you to impossible, unrealistic standards and shaming you for not being able to meet them.  I’m sorry for starving you, for feeding you garbage, for trying to force you to change, to be something you were never meant to be.  I’m sorry for not recognizing your beauty.  

I’m sorry for the times I’ve ignored your needs.  I’m sorry for the times that you were trying to tell me that something was wrong with you and I ignored you and pushed you farther than you could go.  I’m sorry for forcing you to wash one more sink of dishes or do one more load of laundry when all you needed was to rest.  I’m sorry for pushing you to the point of exhaustion.  I know that I have caused a lot of your troubles and pain by expecting too much of you.  You’ve had a rough couple of years, and I haven’t been sensitive to that change.  I keep expecting you to function as though you were completely healthy—you’re not.  I know that.  And you may never be again.  I’m sorry for putting those unrealistic expectations on you.  I’m sorry for getting so easily frustrated with you.  I know I need to accept that and help you learn to function in this frustrating new normal: seizures and side effects and migraines and exhaustion.  

I’m hoping that—since you are still with me, miraculously—the future can be better for us.  I hope to learn to listen to you and give you what you need.  I hope to take better care of you.  I hope to learn to love you just as you are, even though you are not what you used to be.  I hope to help you keep faith.  I hope to learn patience and practice it on you.  I hope to appreciate you and be proud of you.  I hope that we can learn to be strong together. 

Please, don’t give up on me just yet. 

I need you. 

 

Progress?

I always find myself reflecting on the past year in the week following Christmas, and this one was no different.  I’ve been keeping a daily gratitude journal for a few years now (one New Year’s resolution I’ve actually managed to keep), and every year, I think of a title that encompasses my hopes for the year to come.  My first year was “The Year of Gratitude,” (which proved an accurate descriptor—this practice has made me much more aware of my blessings), and 2014 was titled “The Year of Progress.”

Oh, bittersweet irony.  I should not have tempted the fates by calling 2014 “The Year of Progress.”  

Last January, I had resolved to make true progress towards reaching my life goals in the coming year: taking major steps towards writing and publishing a book (or two or three books—I was very ambitious when I made these resolutions) and becoming a self-employed author so I could teach part-time on the side.  I also had ambitious plans to get my epilepsy under control and better manage my stress and get my act together and finally grow up and be the adult I’ve always dreamed of being.  

It didn’t exactly work out that way, though.  

Progress?  It’s hard to see any as I reflect on this past year.  I look at my health and see only regression.  I thought that quitting teaching would lighten my burden of stress, which would, in turn, quiet my epilepsy, but that has not happened.   

My epilepsy has actually grown worse, despite several attempts at medication.  My driver’s license was officially cancelled in September.  I am having seizures almost daily.  They are milder, but a recent MRI showed scar tissue in my brain from them nonetheless.   

Progress is measured by met goals, which imply a measure of control over our circumstances.  We work to achieve our goals. We believe that we can strive to better ourselves or change certain things.  But no amount of discipline or hard work is going to change the fact that I have epilepsy or that I am facing some terrifying and life-altering treatment options (brain surgery among them). 

As my goal this year was to become an author, I spent quite a bit of time writing, but not as much as I would have liked—I participated in NaNoWriMo for the fourth consecutive year (November is NAtional NOvel WRiting MOnth—participants write 50,00 words in 30 days), and this was the first year that I did not meet that goal.  I came in at a measly 41,021 words.  Every other year that I did this, I was teaching (some years full time, one year even overload) but I was still able to finish easily.  This year I had unlimited time at my disposal, but my brain was just too tired to work at that pace—I had several seizures in November, and seizures are exhausting.  I do have plans to finish the piece eventually, but I lack the mental stamina I once enjoyed.  So I didn’t exactly write the proverbial “great American novel,” much less publish one.  Even though I had resolved to make a writing career for myself this year, the only efforts that I dared to make public are these blog entries.  I have yet to seek a professional audience or publication for my work.  

Last January, I sincerely believed that 2014 was going to be my year.  And then, three weeks into that month, I had a seizure while I was driving, which changed the trajectory of my life, completely redefining the meaning of progress for me. 

I did everything in my power to make this “The Year of Progress,” but I did not progress at all in the way that I had hoped.  

I guess, if nothing else, I did gain a lot of good writing fodder through these frustrations and setbacks and experiences, which may eventually become a means towards the progress I wish to see.  (One can only hope.)    

I do plan to keep another gratitude journal in the coming year, and I’ve decided to call 2015 “The Year of Patience,” because I feel like that’s what I really should have learned this year. 

Hermit.

When I quit my job, I was afraid that a weird disease + no job + no driver’s license + living five miles from civilization would pretty much make me a hermit. 

And in some ways, I guess that it has.

I’ve always enjoyed solitude—it’s kind of a necessary part of the writing process, and writing has always been my favorite of hobbies.  But I always enjoyed my solitude as a retreat from life, not as my life, and at times this involuntary solitude feels a lot like loneliness. 

And that kind of scares me.

For the past two years, I have felt like I’ve been teetering on that sharp edge of loneliness, like my only option forward is via the edge of this cliff.  But every time that I think that I’m about to tumble off it, someone reaches out to steady me, to grab my hand, to encourage me to keep going, to give me enough hope to take one more step. 

I know it’s a trite metaphor, but our journey really is made only one step at a time, through whatever terrain we’re forced to cross.  (Right now, mine just happens to be a cliff that overlooks the Pit of Despair.)  It is only through the gentle nudges I’ve gotten from others that I’ve made any forward progress.

And, to my delighted surprise, a lot of these gentle nudges have come to me from former students. 

Yeah. 

From people who spent many of their formative years believing that I was not actually human, that I was a robot programmed by the government expressly to torture them.

It is beautiful to be thought of and remembered, especially by these kids (er, adults—some of them are in their mid-to-late-twenties now).  It was something I’d never expected, and hearing from them makes me feel like I managed to connect with them somehow, through all the noise that is adolescence and hormones and high school drama, and that connection feels like the exact opposite of loneliness. 

Sometimes these communications are small and school-related—a question about MLA documentation, or a request to support a fundraiser.

Sometimes they’re personal—a call for book recommendations, sharing a band I just have to hear or a music video I have to see, or just to say hi.

Sometimes it’s a text at two in the morning from a former student who nearly fell asleep driving, and that prompted him to think of me and reach out to ask how I’m doing.

Sometimes it’s a three-hour Facebook chat, including an apology for “being an arse” in high school (his words), praise for my teaching and understanding, and an offer to teach my foster son how to weld.  (I took a screen shot of this one and hung it up in my office, and I bawled afterwards—this, from a student I hadn’t seen since 2008, and one I never thought I’d hear from again.)

Sometimes (surprisingly often) it’s a recommendation for marijuana to help control my epilepsy.  (Hey—regardless of the message, these four kids still took the time to reach out to me and think of my health.)

And sometimes it’s friendship.  Sometimes it’s regular texting about great books and Game of Thrones theories and Mindy Kaling’s comedy and even a FaceTime book club.  (Which I love.)

I thought that leaving teaching would sever any chance of seeing a lot of these people again—when kids stopped by to see me before, they always came to my classroom.  They visited when they had college breaks—sometimes bringing vases of flowers or boxes of cereal or cards of encouragement or just open arms and a laugh.  But the school was close to their homes, and they were often bored and looking for something to do on their breaks, so the visits were nice, but not entirely unexpected.   They still had friends or siblings or other teachers to see in the high school, after all. 

But now that they can’t visit me at school anymore, I only expect run-ins in public places (malls, basketball games I manage to attend, movie theaters, the like).   

Imagine my surprise when they come to my front door.

One girl called me when she was on her way home from college, driving by my exit on the interstate, which made her think of me, and she asked if she could come over for a visit.  She stayed for an hour, and I cried when she left, because I just couldn’t believe that she’d thought of me, that she’d taken the time to drive out of her way and stop. 

And she’s not the only one, either.  Others have come to visit, too, and still more have made plans to see me over their Christmas breaks this year. 

I mean, I liked my own high school teachers just fine, and they did their jobs and did them well, but I can’t think of a single one I’d call up and visit now. Or ask for book recommendations.  Or FaceTime with.  Or text at two in the morning.  Or recommend marijuana to.  (Not that I’d recommend it at all, mind you, but you get my point…)

It’s nice to be remembered as an actual human being, separately from the institution of the school, especially by kids who often seemed to have little love for me during their time there, and it’s funny how something as small as a text message can yank me from the edge of loneliness and remind me of the connections I have made, and that just because my time as a teacher is done does not mean that those connections have been severed. 

It’s beautiful the way that these kids—nay, these adults—have managed to rescue me from my loneliness in these small ways.  I never dreamed that a 2 a.m. text message could have such an impact.  But it’s more than that—it’s a reminder of the power of connection, and that is enough to save me from shutting myself away, from becoming that hermit I feared I was destined to be. 

All.

I think there’s this really unhealthy and pervasive idea that eventually, if we work hard enough, we will “have it all” someday.  It’s the ultimate human goal—it’s Disneyland and the Powerball jackpot and the Heisman and a Nobel prize, all rolled into one and sprinkled with glittery awesome flakes.  It’s all of your wildest dreams come true.

All. 

The problem with “all,” though, is that it’s a transient concept.  “All” is all-encompassing and ever-changing.  My definition of “all” when I was twelve was certainly different than it is now.  (I had naïve dreams of Harvard medical school—hey, I was twelve…cut me some slack.) 

I wanted this pre-packaged “all” that would have been “all” by anyone’s sense of the definition.  I wanted it to fall into my lap, gift wrapped with batteries included, and I just wanted to open it up and live it out, garnering the envy of my friends with ease as I traipsed down the hallway of life with every single door of possibility open to me.  But as many of those doors slammed shut in my face (the Heisman? Yeah, I’m not going to win one of those…), I had to alter my definition of “all.” 

It has been a rather humbling prospect, redefining my “all.”  About a decade ago, my ever-changing definition of “all” had begun to settle out, and I figured that by the time I reached my 30’s, my “all” would look a lot like what my friends and peers had: I’d have an effortlessly perfect marriage, 2.5 kids, a successful teaching career, a newish car, and an incredible social life that involved lots of flashy parties and travel to exotic locales.   

As I write this, I can tell you that I am 32 years old, and that particular “all” is no longer a possibility for me anymore.  I look at that outrageous list now—one that I once thought to be so simple and normal and easy, practically my birthright—and I feel so foolish. 

Effortlessly perfect marriage? Our love has been tested and strained by things that had the potential to destroy us.  Although we have achieved a good and enviable marriage (though it’s far from effortless and perfect), the circumstances that made it so are dark and haunting, and I wouldn’t wish those horrors on anyone.

Those 2.5 kids?  Well, we can’t have our own kids. Watching my friends raise children of their own, seeing the way that those children have become their all and everything, has always aroused a sad, envious grief within me, and that particular type of happiness—the simplicity of seeing your husband’s eyes replicated in your child’s mischievous face—is one I may never know.  We are foster parents, and the experience has been amazing, but it was never part of our initial plan.  (We do have ¾ a dog, due to his accident—does that count as a kid?)

Successful teaching career?  Well, because of my “disability,” and the fact that I do not have a valid driver’s license, I had to give that up.  I may do it again someday, but right now, I am disabled and unemployed.  (Not exactly where I saw myself ten years ago.)

Car?  I have a 2010 Honda CR-V, which is awesome, except for the fact that I have not driven it since January 2014, so it is basically just a paperweight. 

And that social life?  I’m pretty much a hermit. (It’s hard to have much of a social life when both your geography and your disability confine you to your home.) We get out when we can, but we are perfectly content to spend a lot of time at home by ourselves, eating old popcorn from between the couch cushions and watching trash TV.

So I’ve had to learn to redefine my “all.”  I’ve learned to pay less attention to what could be/might have been and more attention to what is.  I am trying to learn how to see all that I already have instead of focusing on “all” that I don’t.  (Because, obviously, the “all” that I was grasping for fell through my fingers like so much sand.)

I have a strong marriage to a beautiful, supportive, loving, kindhearted, gentle, sweet, dorky hunk of a man.  And I have never been more in love. 

I have a son—foster or no, he is part of our family.  (We have the pictures now to prove it.)  He has taught me lessons about love and acceptance and patience that I know I could not have learned through having children of our own.  And I love my ¾ dog no matter how much of a mess he is.

I miss teaching like crazy, but it hasn’t ended—not completely.  I still get to teach our foster son how to do things (like how it’s not okay to use toilet bowl cleaner to mop the bathroom floor), and I have been overwhelmed by support and communication I’ve gotten from former students.  I love hearing from them, and there’s a freedom in speaking to them as equals rather than an authority figure.  I wouldn’t have gotten that as a teacher.

Even though I can’t drive it, I’m glad to have a car.  Someday, maybe, I’ll get to drive it again.  Perhaps even to visit a friend or two.  That would be nice.

And although I’m far from the jet-setter I’d hoped to be, I do cherish the time we spend with our friends. I no longer take it for granted.  It has made me realize how beautiful those relationships are, and I relish them like fine chocolate. 

So I guess, in a way, I do have it all. 

It’s just not the “all” I thought I was going to get.

And that’s okay.