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.

To Jog, or Not to Jog: That is the Question:

In which our Heroine engages in wishful Thinking. 

There are some things that I miss being able to do.  Today I wish I could strap on my running shoes and go jogging, or maybe even do some serious working-out.  Normally I hate sweating, and I don’t usually have urges to get my blood pumping.  In fact, for years it hasn’t actually felt good when I worked out.  It was like torture to run around the track a few times.  It felt bad while I was doing it, and not so great afterward either.  My joints would hurt and I would feel light-headed, and generally tired and achy.  But, usually about an hour afterward, when I’d had time to really cool down, I would begin to feel energized.  And the next day, during the times when I was just living life as normal, I would feel so good and healthy.  These were moments of torture, but well worth it in the end if I could force myself to work through those awful two hours of workout-torment. 

There are all sorts of New Year’s Resolutions out there that grandly state that a person will eat healthier, will work out regularly, lose weight, etc…  I think I’m feeling this same urge.  And today, I miss the delusion that I can set a goal and go get my heart rate up and that it will be healthy for me to do so.  I also miss the possibility of losing a few pounds around the middle by working it off.  My feeble attempts at walking quickly wear me out and, trust me there is no weight-loss involved. 

When I matriculated from Physical Therapy, my therapist was still keeping my heart-rate below 120.  I asked my doc and he said I could probably go above that and do almost anything I wanted.  Well, I’ve tried a few times, and I’ve started to go back to trying to keep my heart-rate down.  It’s just not comfortable to have my head start pounding in time with my heart-beat.  It’s also not a constructive way to keep me interested in trying every day.  And laying on the couch wishing for an immediate 3 hour nap is also impractical. 

I think many of us take these sorts of things for granted.  Health in general, but being able to run off 10 pounds in the course of few months, specifically.  As I’ve stated in other posts, sometimes it’s about not having the choice, or the possibilities that cancer has stolen that kills me.  Either that, or it will literally be excess weight and poor health habits that kill me, according to the literature I’ve been reading lately.  What would I give for the ability to jog around a track without feeling faint? 

Ho hum… Such dreary resolutions must needs poetry.  In an effort to make myself feel better about not being able to go jogging on cold, icy roads, I’ve decided to do just this and write a poem.  I think it’s a winner. 

To jog, or not to jog: that is the question:

Whether 'tis nobler in the mind to suffer

The slings and arrows of outrageous cancer,

Or to put on running shoes against a sea of fat cells,

And by opposing end them? To run: to die;

No more; and by a jog to say we end

The heart-attacks and the thousand diabetic shocks

That flesh is heir to, 'tis a consummation

Devoutly to be wish'd. To run, to sleep;

To sleep: perchance to dream: ay, there's the rub;

For in that three-hour -nap what dreams may come

When we have shuffled off this extra weight,

Must give us pause: there's the respect

That makes calamity of so long life;

For who would bear the waddles and wrinkles of time,

The cancer's wrong, the proud man's words of scorn,

The pangs of despised body-image, health's delay,

The insolence of the media and the spurns

That patient merit of the unworthy takes,

When she herself might her quietus make

With a sports bra? who would high heart rates bear,

To grunt and sweat under a weary life,

But that the dread of something after jogging,

The undiscover'd country from whose burn

No jogger returns, puzzles the will

And makes us rather bear those ills we have

Than fly to others that we know not of?

Thus a headache does make cowards of us all;

And thus the native hue of New Year’s Resolution

Is sicklied o'er with the pale cast of thought,

And enterprises of great pith and moment

With this regard their currents turn awry,

And lose the name of action.

Flawed Armor for the Lady

In which our Lady’s Memory falters. 

                First, a tangent: I gave myself a couple of sick days from writing because my whole family came down with the flu.  By the way, whatever happened to the happier sick days of childhood? “Yay, I don’t have to go to school today!—and oh my gosh I suddenly have the energy to play with my toys…It’s like a miracle, mom…”  Now, back to the actual subject of this blog post, in which our protagonist discovers a gaping hole in her armor…

                One thing I may not have told you thus far is that every now and then, I do have memory problems.  It took Jon and me a while to realize this crucial, but quiet truth.  In fact, the doctors and nurses used to ask me all the time right after the surgery how my memory was.  It seemed fine—great even.   I specifically remember Jon saying “sharp as a tack” in response.  It was true too.  I’d be lying in bed with multiple drugs running through my system and someone would come and ask where I kept a certain casserole dish or the checkbook, and I’d know just where to direct them.  I knew the finite details of our schedule, remembered minutiae about Eva’s napping habits, and could have told you what my last emails before the surgery were about.  It all seemed intact. 

                Then one day, Jon asked me for details about something that happened a few weeks after surgery—something not immediately recent, but only a few weeks back at the time.  I had no recollection of the event, or of any discussions about it.  There have been a few other instances too.  I’d like to tell you about them, but I can’t currently remember.  In the end, what I do know is that I’m missing a few memories, and that the only thing filling their place is a sense of uncertainty.  Have I forgotten these things because of the drugs I was on, or from the recent and acute trauma?  Or did the Dr. accidentally suck out a part of my memory complex?  I’ve always had a shoddy long-term memory, but usually anything recent is very clear.  This experience overturned my very familiarity with the way my own head works.

I have this uneasy feeling that holes exist in my history that I just can’t access.  It makes me feel vulnerable in a way I’ve never felt before in my whole life.  Fragile, susceptible, over-exposed.  And it is way too close to Alzheimer’s for comfort, which is one of the most frightening diseases in the history of mankind.  The fact that I’ve waited so long to write about this (at least a month or more) should tell you just how uncomfortable I am with this development.  I don’t particularly want to announce any chinks in my armor, but it has occurred to me that it is only making my life more difficult to not let people know.  Besides, I have to recognize that to a certain extent, I am unreliable. 

A few weeks ago I went to my Ward’s Young Women class as a show of support for the new presidency (I currently have a Stake calling as the YW Secretary).  They asked me to make an announcement, which would usually be an easy task.  Although I could remember the meeting I’d been at and some of the details, when I went rummaging around in my memory for more, I found only a big blank spot.  Also, I looked at the wrong page in my calendar.  What culminated was a ridiculously off announcement that probably did more harm than good.  One of the ladies, who clearly had no idea what has been going on in my life, looked at me like I was a complete idiot.  Unfortunately, I was acting like one.  Worst YW Secretary ever.  All I could do was apologize for my disorganization.  (Yes, my disorganization is usually a problem, but is one that I manage to obfuscate because of my usually excellent short-term memory).

On the other hand, the times when other people know about my humbling disabilities are when things get much easier to deal with.  For instance, on Saturday night Jon and I were having one of those oft-held discussions: “no, you said this… and it happened this way…”  “what are you talking about? I never said that…”  After only a few rounds, I had to stop and concede the point, saying, “Then again, I guess I’m not exactly the one to ask…” I hate losing an argument/discussion, but it was nice to just let it go and know that it was okay because I couldn’t do any better. 

I have no idea when the Lord will stop humbling me, but may it happen soon.  Losing a few memories is on its own a small thing, but the feelings of vulnerability that accompany it are devastating. 

What's the Word, Bird?

In which our Heroine embodies the word Miracle. 

Every morning I wake expecting a normal and healthy day.  Contrary to what you might think, I don’t open my eyes to cancer-tinted daylight.  The first thing I hear is generally the happy cooing of my child in contrast to bells tolling sorrowfully for my imminent Poe-like death.  In my daily activities, I am careful of not exerting myself too much, but generally feel quite well.  In fact, there is still a part of me that is surprised when friends see me at church and ask how I’m doing.  Every single time it happens, the VCR in my mind has to spin the tape back to a certain surgical event.  And then it automatically stops and plays a specific scene—mostly imaginary—showing my cancer cells now sitting stagnant against my brain, but with the potential for virulent, burgeoning growth. 

I appreciate every expressed worry, every heartfelt interest in what’s going on in my life, but I have to admit that it’s a bit of a jolt.  It must be that I am an adept at creating my own “just fine” reality.  The real surprise came yesterday when I met someone new.  I began explaining that I’d had a brain tumor and surgery recently.  He didn’t understand what I was saying.  There I was, looking as normal as anyone else, standing straight and tall on sturdy legs saying that I had cancer.  “Oh wait, the surgery is still coming?” he said.  “No.  I had it already…” my mind traced furiously back trying to come up with a date, “maybe seven, eight weeks ago?”  Okay, the date is actually closer to nine, I think, but you get the picture.  The man’s mouth literally dropped open in astonishment.  Still gaping, he turned to his wife, already a friend of mine, for confirmation.  All she said was, “It’s a miracle.”  Yes, that’s the word: Miracle.

In case you were wondering, I don’t feel different even though I know my life is miraculous. I still wake feeling the same as before everything happened: relaxed, warm, a little drowsy, eager for a shower and a new day, and ultimately human.  Is it a part of the human condition to wake this way rather than to open our eyes feeling like a miracle?

Counterfeit Euphoria

In which our Heroine forgets too much

I am astonished as I read this book on cancer (the one referenced in the last post) that I am already forgetting a lot of the details of my cancerous experiences.  For instance, the author speaks of feeling a separation from the land of the living as soon as he found out he had a brain tumor.  As a result, he was religious about not letting others know.  Once reminded, I also recalled this sense of separation.  A long barrier the length of the Mexican-American border, also topped with barbed wire, was suddenly erected between other healthy people and me—they could flat out do things I could not.  Additionally, others began to treat me differently—I was obviously (and suddenly) much more fragile than they.  Even if this fact was essentially true, it still felt strange to be on the cancer side of the chasm looking across at a green and fertile land I recently knew. 

One of the other things the author speaks on is the idea that non-medical practices such as meditation and prayer, done primarily by the cancer patients themselves, can really help the person’s health.  Of course this is true.  I am certain that the author missed the point here though.  There actually is a purpose in prayer.  And he was certainly wrong in not telling others and allowing them to support him in his trouble.  I know and you know that miracles happen.  My eldest brother tells me that he thinks the reason I’m doing so well is because of these things. 

Paradoxically, I recognize that I am currently practicing my own methods of self-destruction.  Every day I pretend that all is well and cancer is no longer a threat.  I do have some wonderful assurances that things will be fine in the end.  Allowances aside, this is still a primary threat, yes?  It is naïve to think it suddenly gone and naiveté can only get me so far if an MRI scan comes up negative.  In the afore-mentioned text I will soon read how changing my diet to exclude processed foods can really help my body beat this illness.  I came to myself around 4 pm this afternoon stuffing a large snickers bar into my mouth.  In despair, I realized my self-destruct mode must stop.  Unfortunately, I may also have to lose my counterfeit sense of euphoria. 

In Proportion: Some Spiritual Truths About Burning Brightly

In which our Heroine Comes up with some good questions and recounts her Zest for life

This post is dedicated to those who have taken the time to write me personal emails about my trials and their own struggles of similar nature.  Thank you. 

I think it was my early college years when I really seemed to get my spiritual life together.  Rapidly afterward I gained what I will describe as a super ability: it felt like I could burn so brightly, spiritually speaking.  I would feel it as I went out to socialize with my friends: the feeling that I could smile a real smile and light up the room I was in with it.  All because I had found a new confidence once I was on solid spiritual ground.  That solid footing allowed me a kind of self-assurance I had only dreamt of in high-school.   I changed from someone who felt nervous in all social situations, to one who could begin to navigate them feeling not just happy and at ease, but as if I could actually help other people to be happier individuals.  And I think upon discovering this that Heavenly Father actually gave me the tools to do so.  My understanding of social situations and my ability to read people and their needs went way up.  I began to learn that Heavenly Father can change our abilities and talents according to need.

I wrote a short poem, a verse really, documenting this feeling:

“Quick and healthy, vibrant living,

shined sedately into my soul.

It plunged downward

A vast tunnel, my insides glowed.”

I wrote this a year or two ago.  I just felt so happy and lit up inside.  Now I can see it was a bit ironic, considering how I probably was not fully healthy at the time, and also how within a few weeks I will be going through radiation and my insides really will glow a little, for a short time anyway.  After the surgery, and during a short time when I was re-establishing my faith, I felt I’d lost my ability to burn brightly.  (Though truthfully, it may not be possible to do this when on opiates.)  I wondered if I would ever be able to burn like that again.  I’m happy to say that I feel I can.  In fact, I feel that I can do it even better or more brightly now.  It is possible that I have learned a new universal truth: that when a covenant-keeping person loses a physical health, the Father will generously compensate by offering spiritual strength, even in proportion to that which was lost.  Would a loving Heavenly Father leave us one-armed (so to speak) in a trying situation that frankly requires two arms?  No. He is not a small or a mean God.  As far as the "in proportion" idea, I have no quotes from any general authorities to support this—it is just what I feel about my particular situation.  I invite you to do the research for me if you feel so inclined. 

At one point in my struggles, I was also wondering why my honoring my covenants and following the word of wisdom had not protected my physical health more.  Of course, wisdom dictates that trials still come, but I wondered how I would ever be able to sit in a Young Women class and learn about the Word of Wisdom without scoffing a little about its simplistic a+b=c equation.  Well, along with a few other truths which I plan to share along the way, the above-mentioned idea is key to answering my spiritual dilemma.