Thursday, May 24, 2012

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.