The Detestable Keppra

In which our Lady takes medicines. 

When I was a child, I once met an old man who had suffered from a seizure some years before.  One side of his face looked normal, while the other resembled melted cheese, or even one of Salvador Dali’s famous melted clocks.  (The Dali reference is appropriate since his melting clocks are usually located in desert wastelands and represent psychological distortion and pain).  As a child, I was both fascinated and horrified by this poor man’s face.  I cannot express how glad I am to not have his problem.  I wonder if I would be subject to this visual malady if I had more seizures, or if they were bigger, etc…  I should be grateful for the medicine that protects me from such a malformity.  Instead, I often find myself detesting this saving grace of mine. 

My ‘saving grace’ has a cute little feminine sounding name: Keppra.  The name Keppra is misleading.  It sounds like some sort of foreign woman’s name, or at the very least something out of science fiction.  Or, there’s the possibility of an allergy drug.  The reality is that Keppra is the anti-convulsant medicine that I take twice a day, morning and night.  While Keppra keeps me safe from excess brain spasms, it also tends to make me sleepy.  I had an allergic reaction to the first anti-convulsant I tried, so Keppra is my new best friend, possibly for years to come. 

I hate it.  It makes me lethargic just when I should be functioning at peak performance.  I take it in the morning between 10 and 11.  15 minutes after swallowing one gigantic white pill, I begin feeling the effects.  By 45 minutes, almost anything can convince me to lie down.  If I haven’t managed to get some couch time by about hour four, I am almost useless as a human being.

On New Years Eve, it occurred to me that many, or even most people don’t know what it’s like to take strong medicine.  I know I didn’t understand before.  A good friend of mine mentioned the information I’d talked about in my blog post Brooding About My Brood, where I discuss the fact that I can no longer choose to have children while on this prescription.  When I answered her, I mentioned the fact that Keppra makes me lethargic and seems to almost shut down my brain—and regularly too.  At this point, you must understand that my friend is one of the most intelligent people I know.  Her eyes grew large and round while a look of sheer horror flitted across her face before she could hide it.  She’s right.  It is terrible to sit in front of a computer and know that what you are writing falls short of your goal, simply because your brain just can’t think it through.  It used to be that when I hit this barrier, I could force it aside by concentrating harder or being more determined.  I don’t have that crucial amount of energy needed to make okay work into something great—not tonight anyway. 

It was even worse when I first began taking Keppra.  My body wasn’t used to it yet.  But I was on a lot of other drugs back then, and surgery had just happened, so I didn’t understand what Keppra was doing to me.  In all probability, the urge to take more naps was good for me.  Now that I am healing so well, it is becoming evident how much of a hold Keppra has on me.  I’ve now come to the conclusion that I would be acting at 100% without it.  (The mere danger of having an epileptic fit the only drawback.)  It’s like a vice grip on my brain, squeezing all extraneous activity to a halt.  Every now and then I’ll forget to take the medicine in the morning.  These hours are few and precious to me.  My activity level is unparalleled.  At these times I feel like the way I was before surgery, even several years ago before the extreme fatigue hit me that seemed at the time to coincide with pregnancy.   

I’m beginning to get used to the near-constant swim through molasses, the times when I go somewhere and simply sit as if in a fog because it’s the best I can do at the moment.  It is most difficult in the late morning—usually my golden time during the day.  At night, I simply give up and go to bed soon after I take it. 

The Life Miraculous

In which our Heroine lives the Miracle.

            Yesterday, a woman said quite frankly to me, “You know you’re a walking miracle, right?”  It’s funny that she said that, because yes, I am aware of this fact.  It is this awareness that made me pause and re-read page 3 of Leif Enger’s Peace Like a River several times just a few days ago,

“Let me say something about the word: miracle.  For too long it’s been used to characterize things or events that, though pleasant, are entirely normal.  Peeping chicks at Easter time, spring generally, a clear sunrise after an overcast week—a miracle, people say, as if they’ve been educated from greeting cards.  I’m sorry, but nope.  Such things are worth our notice every day of the week, but to call them miracles evaporates the strength of the word. 

“Real miracles bother people, like strange sudden pains unknown in medical literature.  It’s true: They rebut every rule all we good citizens take comfort in.  Lazarus obeying orders and climbing up out of the grave—now there’s a miracle and you can bet it upset a lot of folks who were standing around at the time.  When a person dies, the earth is generally unwilling to cough him back up.  A miracle contradicts the will of earth.

"…People fear miracles because they fear being changed—though ignoring them will change you also… No miracle happens without a witness.  Someone to declare, Here’s what I saw.  Here’s how it went.  Make out of it what you will.”

           From my standpoint, the statement rings clear and true.  Miracles are things like having relatively no symptoms or swelling even though you have a baseball-sized tumor in your brain.  Or the kind of healing that physical therapists shake their head in amazement at.  I especially appreciate the miracle of literally having my medical information fit snugly into position alongside an answer to personal prayer.  I knew from personal revelation that I would be fine, and it seemed that my pathology report was just trotting to keep up.  It’s not often that a particularly aggressive form of cancer changes its mind and decides to lie dormant.  No, my grave hadn’t been dug yet, and so the earth never had to literally cough me up.  Nevertheless, I see my situation as a contradiction of the will of the earth: my dust-to-dust limbs currently have strength.  In this way and others, I sense miraculous change in myself, as well as in many around me.  These things I witness, and more.  

Hope for Hope and the Story of a Piano

In which our Heroine pulls a Chopin. 

Or a Beethoven.  I sat down at a piano yesterday and played a simple tune I learned back in grade school.  Mind you, I am no virtuoso, but playing that simple tune—with both hands—is something I’ve been able to do for most of my life.  I even learned to play the piano upside-down using this song at one point in my life.  Trust me, I know it’s simple notes by heart.  There was a simple joy in playing it yesterday as my daughter pounded to her heart’s content on the upper notes next to me.

The reason I write on this is because I recollect a time when I could not play the piano.  It was the first week after surgery.  I was with my occupational therapist and my friend Sharlene, one on either side of me as I swayed unsteadily through the hallways attempting to teach my left leg to stay under me.  There is a light-filled place near the neuro-unit with a TV, tables, comfortable chairs, books, and a piano.  I knew it was useless at the time, but in a fit of idiotic despair, I stumbled to the piano bench, sat heavily, and used my right hand to lift my rubbery and senseless left onto the keys.  I suppose that I hoped my ability to move my fingers would suddenly reassert itself.  Unfortunately, the dead weight of my hand lay there uselessly, pressing the keys down in unmelodic combination of notes.  I would say that this was the dreariest part of the whole paralysis experience, summed up in a few harsh moments as I sat there feeling sorry for myself and absolutely incapable of creating beautiful music.  I think my therapist almost cried too as I sobbed piteously (the gut-wrenching kind) onto the keys of that hapless piano.  Sharlene patted my heaving back and sat steadily beside me, offering sustaining phrases about healing. 

There is a teenage girl I know here in Anchorage who is currently healing from some terrible things.  I don’t know the extent of her therapy, because her condition is far different from mine, but I do know she has some sort of physical therapy to regain the use of her body right now.  I think of the long road she has ahead of her.  I only wish she had the energy to read my words and know that things will be okay—eventually.  But I know she probably doesn’t, because I’ve been there myself.  In dedication to Hopey, I declare gratitude for the capacity to play a childhood song, and continue to have faith that she will be able to walk, run, hike, or play soccer (etc) again soon.  Prayers worked for me, and they will work for her.

The Creepy Crawlies are (almost) a Medical Condition

In which our Lady scratches an Itch. 

                It is not quite a diagnosis, but almost.  I have the creepy crawlies.  Brilliant neurosurgeon ‘A’ actually used this term a few weeks ago to describe what he knew was coming: the creepy crawlies (but not the heeby jeebies or the antsy pantsies).  No, what I have is the irritating sensation that constantly roams across the former dead strip on the top of my head.  I thought it was itchy before where the stitches were coming out, but this is different.  If there is an itch scale, I'd call it a 7, for "there are ants (but not fire ants) foraging on top of my head!"  ( 8 being fireants: itch and sting; 9 being I can't concentrate and I'm going to scratch my scalp off; 10 being am I bleeding down my face yet?)  Vocabulary wise, I’d say that the itch is less impactful but more invasive, perhaps.  The thing is, when I reach up to scratch, there’s no place to actually do it—no way to relieve the itchiness.  There’s no spot to focus in on.  It just flutters back and forth on top of my head.  And I end up rubbing down my whole hairdo just as an attempt to get it to stop.  I am quite sure that the people in church today thought I had lice.  Why else would I be scratching so much?  Which brings up a good point: Why am I writing about this? And why am I so darned itchy? It seems that my formerly dead nerves are reawakening. (Honestly, my nerves are more fickle than the artist formerly known as Prince). The top of my head is a high nerve center, and just needed some time to heal apparently.  So, cross the top of my head off the (small) list of things I’ve lost, because it was only temporary.  In memory of my gratitude list yesterday: I am grateful for an itchy head?

I am the Wunderkind

In which Our Heroine discloses her true Identity.

            There is a small segment of our society that somehow coexists alongside the highly athletic and health-concerned here in America.  I am of this segment.  We call ourselves the uncoordinated, the out of condition or out of shape.  Those of us so athletically unable are also unfortunately dubbed incompetent, inept, hopeless, unsuitable, and useless by Microsoft Word’s Thesaurus.  The opposite of the word athletic is unfortunately unfit.  Is there a societal critique implicit here?  (You would think the unfit brainiacs responsible for dictionary definitions would stand up for themselves a little more).  For those of us in the flabby, frail, weak, puny, and ailing category, I’d like to perhaps redefine our “hopelessness” a little.  You see, its not that I don’t want to be capable on the basketball court, or able to run long distances very fast and impressively.  I’ve just never been able to do it as well as nearly everyone else.  And I like to be successful at everything, so my resolve in these athletic instances sharply declines even in the heated and sweaty moments.  By the way, how do you all get past the icky sweat barrier?  Can’t figure that part out…

                So, to redefine: The un-athletic are uninspired physically, perhaps too rational and controlled in competitive situations.  (Please disregard unintended critiques here—unless you have wronged me personally in some athletic way) But really, forget the hyperbole.  Its mostly about this: many of us assume we should be able to do whatever the others can do, and feel disappointment when proven wrong, wrong, wrong.  The additional problem is that I have become jaded about this physical stuff over the years, suspicious of my friend’s attempts at making it “fun” for me.  Okay, just to be quite clear at least once, making contact with the ball using anything other than my face and nose is HARD for me. 

                The good news is that even this part of my former identity has been deconstructed in the last month.  Apparently, I am a physical therapy wunderkind.  My body is healing swiftly in all important ways.  I love thinking that I am a veritable physical genius for once.  Yeah, I’m going back to the basics at therapy, but I’m finally a success, so I’ll take it.  My therapist, Maria, has expressed surprise several times at the progress I’ve shown, especially when I admit to not having practiced much between sessions.   To the physically unable who read this blog, I even confess a heady enjoyment at times when I am throwing a ball, catching a stick, or screwing bolts on screws at a therapy session.  I understand now that being able to use my body better is FUN.  (More fun that having a dead limb dangling uselessly at my side, for sure).  Ah, such happy times—such bliss—when I find joy in the simple things in life.