"...Seven months ago, my wife had a catastrophic stroke. Until today, for all my alleged training and fondness for ornaments of rhetorical pretension, I have thus far utterly failed in my efforts to successfully articulate the series of events that have since surrounded us. After a great deal of thought, I have narrowed the field down to two similes that I feel most adequately frame our dual semiotic crises. The stroke has left her permanently debilitated, and she and I have since learned to communicate using a propriety language and dialect we have created together. As I understand it, according to my wife, having a stroke is “like” gaslighting.
It took many months, but a few of the memories from before her stroke—and even a very few from immediately after—have slowly come back to her in fragments. She reports that the stroke itself was painless, as it was accompanied by the cursed blessing of a coma. When the victim awakes, the damage has already been done. The stroke is a thief and a destroyer: it primarily robbed from her mind the very cogs in the engine of linguistic transmission. However, what many people don’t realize about my wife is that the stoke—while in the process of firebombing her brain—also encountered several others non-linguistic gears: the stroke affected her “super-ego,” her muscle memories (writing, chopping vegetables, brushing teeth, etc.), and the very specific cognitive gear of self-awareness that would allow her to perceive her impairment. Each of these things were not stolen outright, but they were instead blown into a million fucking pieces.
For Julie, this meant that the stroke was not at all, like most people thought, some traumatic event that could be grieved, but instead it was a mysterious, waking nightmare that she could not escape from. By the time she was helicoptered to the hospital and began to recover from her sedation and coma, Julie was now, neurologically speaking, literally incapable of understanding why she was being detained. Her first memory of the University of Utah is one of demanding to know why she was in bed and why they would not let go. At this point, she had no ability to realize that she could not speak, even as she was in the very act of trying to do so: words still came freely to her mind, but as she tried to send the words down to her lips, she could not perceive—even while it was being pointed out to her—that there was nothing was coming out. Without a functional super-ego to stop her, or the ability to identify the nature of her situation, for the first few days Julie would repeatedly tear off her hospital gown in confused frustration, try to rip the IVs and electrodes from her arms and chest, and she would then attempt to escape naked from the ICU in angry defiance of her captors. This was still before she could even yet walk unassisted. I had to tackle her numerous times and pin her down until I could call for reinforcements, after which the nurses would swarm in and once again sedate her.
As Julie began to recompile a new persona, she began in-patient rehabilitation via speech, occupational, and physical therapy routines. However, even as she would engage in rehabilitative therapy, her tunnel of reality at this point was still entirely incapable of fathoming answers to any of the following questions: Why was she was in the hospital? Why are the nurses asking her all these questions? Why were they asking her to demonstrate if she could hold a baby in her arms? Why can’t she have a hamburger? Why could she not communicate to anyone? Why was she having trouble reading? Why was she was not allowed to see her two-month old babies? How long is she going to be stuck her?
I stayed with her night and day until she began to adapt and feel at least somewhat comfortable with life in the hospital. It took, I am guessing, more than 100 separate attempts over the course of about a month for me to finally, successfully explain to Julie that she had indeed suffered a stroke and convince her in some part of the nature of her new disability. This devastating revelation, once it finally hit home, was certainly not welcome. However, until that moment of cruelest epiphany, even a month after her stroke, the world she had perceived up until then was one of perpetual confusion, isolation, fear, and gaslighting.
As for myself, the simile I have come to settle on, at least for today, is this: watching your 29-year old wife suffer and slowly recover from an entirely preventable, massive stroke after giving birth to your first children—your twin boys—due to the repeated and utter incompetence of no less than a handful of lazy, negligent, and perhaps downright malevolent medical personnel is somewhat “like” the scene from Alien where John Hurt explores the mysterious derelict spaceship, but my sordid tale is not one that ought to be posted here..."
Tuesday, January 3, 2012
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3 comments:
Extremely insightful. Her world had to be recreated...reunderstood in her own head...in her own way.
Your world was shattered.
I think you deserve the right...the outlet...if you will...to express how this event has changed your life.
As for modern medicine...it is far from perfect...because people are not perfect. Tradegy does occur thanks to misdiagnosis. No one feels more guilty than I do that I didn't see what was happening to her for what it was...until it was nearly too late.
Sometimes life just sucks. But you have loved her through it all. Cudos to you for not running away...for sticking by her...and facing this head on. You have my deepest respect, and my outright support.
Thank you for sharing this with me and everyone else. It helped me better understand the challenges that she & you have and are experiencing. I wish I was closer so I could help in some way.
I agree with Maureen that you deserve the outlet. No one will understand what you're going through.
I know from taking care of my father that it takes a lot out of the caregiver.
Love & prayers to the whole family.
dun dun dun........ irony sucks.
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