Jolly ol' St. Nicholas

in Which the Little One Writes a Letter.

On the Eve of the day in which our world was to end, my three-year old quite obliviously wrote a letter to Santa Claus.  She chose the letter A.  And then she drew a balloon and colored it black.  On the outside of the envelope she instructed me in very fine detail to tell Santa that she wanted two toys.  No more, no less. That night, she gave thanks for Santa and his reindeer.  Also, thank you that I am going to get two toys.  At one point in time, Eva had known that this holiday was about Jesus, but then she saw Santa in the mall.  I’m pretty sure that he’s the one who whispered the idea of two toys in her ear.  And now it must come to pass.  There are no outs on this one because she truly believed him.  Two gifts—from Santa, because he never lies…. 

Meanwhile, I face the cruelest of all facts: I spent good time and money buying my daughter the best of all gifts (exact number: two).  I had visions of being the coolest mom ever as Eva opened her princess stuff—forget visions of sugar plums.  We don’t have a ton of money for this kind of thing.  Now the parents are stuck with giving a tutu (her third), a hand-me-down Tinkerbell purse, and a toothbrush.  All these were supposed to be stocking stuffers (thanks for the full stocking, Santa)! For the good stuff—scratch that—all the stuff I have to give credit to the dubious Kris Kringle, alias St. Nick.  Unbelievable.  

It’s a good thing the world didn’t end, because I would be charged with a)failure to teach said child in all things religious and b)strangling a fat and jolly man.

SHUT-IN

in Which Legalities Greatly Affect our Heroine.

I don’t get out much. 

About five months ago, I had a major seizure and it takes the grand total of six months for quasi-epileptics like me to legally drive.  I am not actually epileptic and I don’t plan on having a seizure anytime soon, yet I am illegal.  Oh-how-traumatically-unjust.

But maybe I’m not seeing this the right way.  For one, I now know who my real friends are—they are the people who routinely drive me everywhere.  Additionally I get to spend a lot more one on one time with my daughter.  I appreciate my husband even more because he is my constant companion: i.e., chauffer.  I get to do a lot of reading.  With all my spare time, I do a teensy bit more housework. 

The unfortunate downside is that I don’t have a lot to write about as far as current events.  Right now, I am the event of every day (along with my daughter and her shenanigans).  In that vein, a summary of me and my life: I feel pretty good, though I still have tired/dizzy spells sometimes (not every day).  Emotions fairly stable (except for that one day…).  My head shakes when held in the right/wrong position, like an old woman.  This can be very disconcerting when teaching a RS class, solution: slump as much as possible and tip head alternatively from left to right.  If you are lucky, people will think you are concentrating really hard on various comments—not that I wasn’t.  (Promise--the comments were exceptional, but my slouchy neck issue was a distraction on occasion.)  Grade: B+.  Oddly enough, it isn’t so bad to be awkwardly off-balance.   It’s the driving thing that’s really getting on my nerves.

 

Going Batty

In which the Fruitbasket goes Bananas.

About a month ago, I was completely unable to control my emotions.  Here’s a visual for you: One Sunday, about 15 minutes before leaving for church, I began crying for hardly a reason.  I could not get myself to stop.  In the end I was so red, puffy, and tired that I opted out of attending my Sunday meetings.  No way was I going to show up looking like that.  Thankfully, that has passed.  Sort of. 

Several times in the past three to four months, I have felt a sense of dizziness and vertigo—especially when I was at my largest combined dosages of Keppra and Lamotrigine.  This has gotten considerably better as the weeks go on, though I still have a rough time every day from 11 to 3.

Since I began the decrease of Keppra, vision issues.  At first I thought I was having trouble focusing my eyes—as if I was crossing them and unable to fix on an object.  Sometimes it almost seems like my vision is getting better, like I’m wearing prescription glasses that are too strong for me. 

All of this doesn’t even cover the confusion, memory problems, and general stupidity.  But this a topic for another day.  I still need to work these things out in my own head.  If you can’t tell, I’m not really sure what is going on here; possibly “I am going bañañas and there are bats in my belfry,” thank- you-Madonna.

 

Better Than the Obligatory Thanksgiving Post

In which our Lady is Sincerely Grateful.

Facebook has people who go all through the month of November and up until Turkey Day with incredible gratitude.  Every day they post something for which they are thankful.  I’d like to think that I have at least as much to be thankful for as them, but I am unwilling to get on Facebook every day.  So, although I could give you a list of exactly 22 one-liners, I will here do something a little different.  By the way, I mean no disrespect for those admirable facebookers who…one-line.  After all, they are my inspiration today.  Okay, so here goes:

Thanks to all the people that are constantly thinking of me and helping me out.  You know who you are and FYI I hope to get actual Thank-you cards mailed out someday.  Meanwhile I will shout my gratitude out to the universe.

There are those who support me physically—thank you for making me food and providing the occasional child care.  These people drive both me and my child places when I cannot.  They open cans and tie knots when my hands get all weak and shaky.  They teach my child and nurture her when I am weary—just so weary of doing it all.  There are so many of these supporters.  The best word to describe them is simply this: they are GOOD.  (As in “God created the world and it was good….”)

We move then to the emotional/mental/spiritual support.  There are those who share various parts of my malady and who are open with me about what they are going through.  Because of their empathy and candidness I learn from them.  Many are those who lead by example in addition to actually guiding me into spiritually uplifting situations when I can’t seem to find true north.  There are those who listen to me when I’m down, and who deal with my insanities while never making me feel dumb.  I know I’m not driving at full throttle (is this even a commonly-used phrase?), but people are mostly kind to me about that.  I realize that I often exhibit stupidity/slowness/incompetence/Valley-girl brainlessness.  It can be really humiliating when I am the object of a joke that I don’t even fully understand.  I tell you now that KINDNESS is a priceless gift.

As I read back over what I have just written, I realize that my husband exhibits all of the goodness and kindness addressed here, in all its finite detail.  You know, when I was lookin’ for a man back at good ol’ BYU, I picked out kindness as one of the top three qualities on my I-could-date-this-guy list.  And so, finally, I come to another point of gratitude, I am so glad I found Jon. 

 

 

The Brave and the Grey

In which our Heroine Considers Dying—um I Meant Dyeing.

My hair is going gray. (sudden sob)  I’ve noticed a few gray hairs sprouting for some time, but last night I saw more.  As I looked in the mirror just before bed, I saw that my hair was a little lacking in luster—yes that’s the word: lackluster up near the scalp.  It seemed pale.  I thought to myself, Is my hair thinning up there? (shock: whatever this is, I will almost certainly sob soon) baldness seemed impossible given that I have always had this huge mane.  So I crept closer to Traitorous Mirror, and found that about an inch from the scalp on either side of the part was pretty—scratch that word—very gray.  (surprise hiccup sob)  What?  This never happens, does it?  All the people I know had a few grow at first then slowly more begin to turn.  But an abrupt inch?  What is that about? (frustrated sigh-sob).

Gray is such a boring color.  Why can’t we at least use grey instead?  The British can make anything look right by dressing it up in faux splendor.  Gray (yarrgh sob).  Grey (silence, almost).

Meanwhile, I woke this morning and immediately thought, my-hair-is-gray.  (groggy sob)  I tried to lie there longer, but it was too pathetic. (pathetic sob) So off to the shower I went, uselessly hoping to wash the gray away.  Oh wait, its hair dye that washes out. (wet blubbering sob).  Oh no! What if I have to start dyeing my hair! (mnmmmnnn: high whiny drawn out sob) Then: (sharply indrawn breath ending in shaky sob) Dyeing sounds an awful lot like dying—are they even spelled differently?  Microsoft Word tells me that they are.  Still: (hounds baying to the moon howl/sob).

Things I will lose if I truly turn gray:

The potential ability to flaunt.

All final joy in looking in the mirror.

The final, grasping hold on youth.

Money due to hair coloring product.

Probably the nice texture of my hair as it will be replaced by the wiry grayness of both of my grandmothers.

My husband’s love.  Just kidding, I hope.

All appearances of normality.  I’m already weird enough, I don’t need to add a semi-youthful face staring out of an ugly gray. 

Happiness, because I can only be depressed from now on.

My pride, as I will have to face the certain indignity of using the word gray at the DMV.

The former belief that brain surgery is worse than anything I could ever experience.

 

Alternativly, I guess I could show my gray stripes and go out with nobility.  After all, I have earned them, haven’t I?  The problem here being that I don’t have a noble bone in my body.  Pride yes, nobility no.  Oh how I mourn my misspent youth (grief-stricken, somewhat despondent sob) May the humility stop now (fervently sobbed, quickly stopped).  Well, I don’t have to let it get me permanently down.  This one I can hide.  I will fight this turn of events.  I might even do it with richer color (short sob of quickened resolve).

That Happy Place

In which our Heroine takes Drugs.

What happened after/during the seizures:

I now go to a neurologist by the name of Dr. Troxell.  If the true sense of doctoring lies in the ability to heal, then she passes with five stars.  As an aside, she happens to know certain members of the Dahle family.  Ahem.  I am pleased to induct her into my corps of doctors.  Conversation is easy.  She actually listens and seems to understand.  She heals both physically and emotionally.  I’ve had some excellent doctors in my short time, but they quickly lose interest in me once they realize that death isn’t imminent.  With them, I am to be monitored—at a distance.  The need for anti-epileptics is both a current and continuous problem.  For this reason, I am glad to have someone like the good Dr. Troxell.

At that first visit, we discussed how my then current medication, Keppra, needed an increase in dosage.  At the thought, I literally felt a sense of panic when it was mentioned—hair standing on end and all that.  I had taken that dosage before, and it was awful.  That’s why I (with my P.A.’s clearance) had tried to go lower and then had those seizures.  Hah!  Great solution.

I personally hated Keppra, but to be fair it was excellent as an anti-epileptic.  On the other hand, it was tough on my otherwise tender emotions, etc…. On a graph: a gently undulating line the mean of which is lower than my usual.  Steady and… boring.

Instead we decided to try the switch to another medicine, Lamotrigine.  I am still trying to figure out if it works well for me.  Some medications take time to get into.  You increase slowly until you reach the target dosage.   In my case, three months.  I reached full dose and then leveled off for a few weeks.  I felt great.  Then I had what I felt was a seizure—small but it had that feeling of mind-freeze and then uncontrolled jerky movement.  Welcome to the world of intimately knowing a seizure.  It comes, you instantly recognize it.  “Oh, hello erstwhile friend.  Not glad to see you.”  Anyway, Lamotrigine was increased a teensy bit, and then I began the too-slow purging of Keppra. 

Here’s the thing, changing dosages is murder on me and I have to do it every week.  If I can just get to that happy place—the one where I stay constant for a few weeks—then I feel great.   The weekly adjustments, though small, are severely hampering my lifestyle.  The good news is that so far, Lamotrigine seems better for me emotionally.  Once again I wield a pointer at the imaginary graph: its gets me back to a higher mean, though I do have a tendency to go up and down a lot more.  That’s okay with me—feeling emotion is worth it as long as the ups/downs don’t get too high/low.  Anyway, my creativity is back and that is almost good enough for me.  Well, we’ll see what happens.  Taking both Keppra and Lamotrigine at the same time may be quite different than doing either individually.  The clock ticks.  Eventually we will see. 

Summarizing

In the which Writing is a Relief.

Months and months since I’ve last written!  I stopped for two reasons:

1. I began to have seizures last spring and into the summer due to my medication being too low.  They made me tired.  Once I have a seizure I’m basically out of commission for the next five days.  The cycle is this: I have a seizure, get so tired that I can barely function, then become petrified that it might happen again, and am then afraid to do active tasks that might set off another one.  I am currently working to solve this problem.

2. I started to feel like I was hanging all my dirty laundry out to dry.  Sometimes, a person just needs some privacy to deal with personal stuff. 

To explain: One of the initial reasons I began this blog was to let friends and family know what was going on during my recovery.  That seemed less necessary as the months went on.  However, after all this time I do still have the occasional health-based challenge.  If people don’t know about it, then incorrect assumptions happen.  They may think I’m just fine and can physically or emotionally handle everything another person could.  On the other hand, there are times when I am completely discounted because I have health problems.  Even if people do know what is going on, they still don’t understand how it is to work through it day by day.  The closest thing I can do toward correcting such assumptions and this lack of understanding is to write descriptively about it.  

Additionally, sometime in the past few years I went from introvert to extrovert.  I need to get this pent-up emotion out somehow.  Unfortunately I have trouble getting coherent words out of my mouth and now occasionally stutter when I try to speak.  Writing is so much easier.  Actually, it’s a relief.  

The Throne of all Showers

In which our Heroine Sits.

Today I used a shower chair for the first time in two years (while showering), and I thought to myself, “Wow, I should really write about this because my life is full of unimaginably bizarre experiences.” 

Using the chair today brought back some memories.  Like the time when my mom had to shave my right armpit for me because I was paralyzed on half my body.  (Hey, I’m just letting all you healthy yuppies in on some real-life sickie information here.)  There is always the lovely memory of my mom (bless her soul) putting A LOT of towels down on that cold chair and pretty much anywhere I was going to be just so I could stay warm, which is ridiculous because those who truly convalesce have no energy to dry and braid their lustrous locks of hair.  Warm towels are useless against the wet head. 

However, none of the above experiences applied today.  I needed the chair because my currently fluctuating medication makes me dizzy for several hours each day.  Of course, that precise moment of wooziness was the only time I had to take a shower today.  Usually I avoid the problem by wisely ordering my schedule around the medication.  And so goes my life: largely directed and certainly influenced by my health.

And here the slightly modified part that I write in my journal at the start of a new year: I hereby promise to write much more often in this incredibly important, wonderfully interesting, and shall we say, indispensable blog.  I will even post a summary of the past several months so my indefatigable fans will be current on what is happening otherwise.  I know this because it is already written.  I set the date and time for 11/14/12 at exactly 2:03 p.m. Alaska Standard Time.

Invalid vs. the Grateful

In which our Heroine tries to be Happy with her Lot in Life.

Speaking of split worlds, I also live in a place of both discontent and gratitude.  Yes, you can have totally conflicting emotions all at the same time and even for days on end, if you are me.  Lately, I am feeling a confusing combination of invalidation in life and yet gratitude for that life. 

It is not news: one of the best ways to beat hardship and the accompanying anger and depression is with gratitude.   For instance, while I was stewing away in my doctor’s waiting room that horrible Monday, I was dually aware of how blessed I have been in my recovery.  Every time I go, I fill out the medications and physician information sheet.  It consists of fifteen or so lines for medications, and three areas for your other doctors.  I wrote my ridiculously low dosage of ”500 mg 2/day” next to my one-liner “Keppra,” and felt a little better about my lot in life. 

My lack of emotional maturity was next brought to bear against the 20 or so patients who came and went while I sat there—every single one of them looking worse than me.  After all, my scars are all hidden underneath what the world of teen fiction might call a ravishingly thick head of wavy hair.  I do not use a wheelchair, nor do I limp.  My hands are weak, but I can still use them.  I am not grossly overweight, or even cancerously underweight.  My medicine makes me a little crazy sometimes (illogical, irrational, easily irritated), but on the whole I am in control and very happy.  My wonderful husband and daughter were there with me (no babysitter, and by the way I need a chauffeur now)—I was not alone that day, nor have I ever been bereft of support. 

These things are the truths of my life, all laid out in that one waiting room experience.  But more than that, God has given me some truly wonderful tender mercies lately.  First, I have had a lot of opportunities for service in both church and community.  When you have limited time, it is nice to know that you are doing something worthwhile with it.  It is amazing how much energy you can get just from doing something for someone else.  And I can’t help but love it when someone acknowledges that service.  One particularly hard day, I began to feel like I’d made myself physically ill (quite literally) for nothing as I overheard someone else claim credit for something I’d spent hours preparing for—albeit while quietly at home and for weeks in preparation rather than at the actual date of the event.  I turned around and bitterly walked away from the situation.  Not two seconds later, someone interrupted my moping to express gratitude for something else.  Perfect timing—I really needed to hear that right then.  A few days later, I received a surprise thank-you card from a friend for teaching a Relief Society lesson at church—also great timing.  Caring surprise phone calls, cuddling with my child, successful gardening ventures, or my husband bringing home dinner and doing the dishes while he laughs with me about something—I have felt the reaffirmation that my life is full, though I am simultaneously aware that it really only consists of 1/2 to 2/3 the amount of livable time for which I long. 

Tara vs. the Invalid

In which our Heroine has a Seizure and experiences AFTERMATH.

A long time ago, in a blog far away, I expressed my confusion over the word invalid: pronounced 2 ways and with two different meanings: as in one with an illness, and then one who has been invalidated—made non-essential, unsound, unacceptable, even nullified.  At that early time of recovery, it was irritating to find that this title applied to me so well.  However, it is more annoying to find that after nearly two years of recovery, I am still an invalid. 

I’m getting it now.  Sick people are invalidated from society not because they are “unacceptable,” as the thesaurus says, but because so much of their time and effort is spent being ill, and therefore much of their life really is invalidated of both energy and enterprise.  I would say that I spend a good quarter of my day (not counting my 9 hours of sleep each night) resting up so I can live the other hours more meaningfully.  I’ve been deluding myself into thinking that I would make a full recovery after brain surgery.   I don’t mean to be maudlin.  The simple fact is this: I have a chronic illness named brain cancer, and I need to finally get it through my (metaphorically) thick skull.

This abrupt realization is brought home by a couple of recent seizures.  The first was a Monday about two and a half weeks ago.  I had just walked ten minutes to a friend’s house, and was greatly surprised to find myself standing at the top of a half-flight of stairs shaking uncontrollably.  Now, I’m no fool, and I know you are all just a bit curious about what it feels like to have a seizure.  So, here goes:

Imagine yourself on the way out of a smile, when your face freezes into a grimace and your upper body starts jerking horribly.  You are conscious and still standing, but become aware that you really should get to a chair.  Your mind is working slowly the syrupy sludge that is a seizure even through the panicky adrenaline you can feel washing through your body.  Desperately you think, “If I can just concentrate and take a deep breath, then maybe I can stop before my friend notices.”  But it is too late.  You hear her repeating your name, progressively with more alarm.  It takes five to ten seconds for you to get your response out—and are somewhat surprised to find that you can.  But your jaw is stiff, and you come out sounding like you need speech therapy: “Yeessh,” in a deeper voice than usual (think special needs voice).  Friend grabs shoulders and tells you that she is going to help you back to the bench a few steps back. “Ohh…Kayye.”  Once sitting you are able to take a deep breath and the thing stops abruptly. 

But that’s just the beginning, because there is the aftermath: You are tired for the rest of the day—quite literally bone-weary.  Actually, it lasts for a week.  You call various people over the next few days to get out of various commitments/appointments.  You stop doing housework and quite cooking meals in favor of sleeping.  Your child watches progressively  more hours of TV.  You do what you can, but its never enough.  You wish for more energy, and you angrily blame your anti-convulsant medication Keppra—after all what are you taking the stupid stuff for anyway?  You make an appointment and meet with your neuro-surgeon who simply increases the dosage for said hated medicine.  In the face of your emotionally erratic displeasure, the poor man refers you to a neurologist.  You are so tired after spending all afternoon in the waiting room of your doctor’s office that you come home too exhausted to think and forget to rip open the bag containing the more powerful Keppra before going to bed and instead take the old.  The next morning you have another seizure standing in front of your vanity mirror.  It is mildly interesting to watch yourself seize, but mostly grotesque, and you can help but feel a little repulsed by yourself.  More anger.  More exhaustion from seizure combined with the inevitable moodiness and tiredness that accompanies getting used to an increased dosage of your most beloved medicine. 

You live in a split world, one in your head that makes idealized plans for what it will be like when you’re all better; and the other where you realize that the only reason you have time to make such ridiculously hopeful plans is because you have to spend all morning lying on your back.  But don’t worry—this is not the end of the story, please do take the time to read the next post to see all the good stuff that is happening to me too.