Clever Cleaver
Sometimes, without thinking, I want to say something quickly or in the tone of voice I used to use, and I stumble. “Let’s investigate” comes out “Alesk inveskgate.” “Acted” comes out “Askate” or sometimes “Askid.” “Butt squeezes” comes out “whatkkseez.” Often my words come out like pure gobbledygook. Like the sounds a baby makes but not so cute. Embarrassing (amvushking). I have to go back and pronounce each syllable loudly and angrily. It gets better when I’m angry. I go from 0-60 and get angry, and not show it. It’s a constant up and down and it’s exhausting. Every day, all the time. That’s why I’d rather write.
The worst part is I can’t easily participate in sly comments. Banter. (Ufbask) Or even not so sly comments (I don’t do sly so well anyway.) But then again, it’s not so good having to make conversation either, even when [whensk] I’m really interested) in the (indiga) back (bask) and forth with a friend (athren). I dread it, but at the same time, I want to be social being. It makes me bad when I talk gobbledygook and have to robotically re-pronounce words. It makes me feel bad when I take a backseat and let the conversation go on like I’m not there. Like I’m irrelevant.
Eh, this description do (ga) the phenomenon (phkacnomen) justice. Words come out with extra (ekrah) syllables (skequillabubes), pauses/hiccups where none would normally apply. And each time it comes out a different way. It’s unpredictable. It’s like an unearthly sound. There’s the screeching sound in my head. But goddamnit, I keep trying.
I’ve got to get the point of amusement by my butchering of language, but how? I feel like a martian when I speak. Hello to earth!
A Burst of Color
I am not going to get all poetic on you all the time, but I think this is pretty good. At least it’s from the kishkas:
There it was, like a magic trick for me
There wasn’t a rose in sight
But it lay there shining up
from the concrete slab of sidewalk
like an invitation, a tease–a petal.
The two objects revealing their souls,
One gritty, matte, pedestrian
One ethereal, almost levitating,
The color of blood—the real color
in its surprising burst or trickle,
of warm color, not the deeper color
when it dries.
Delicate as skin,
The expanse of rich velvet
A little white spot where
it broke off the stem
A grand carpet for an ant
If I bent down to retrieve it
It would disappear, a figment
Like a cat chasing a light reflected on the floor
Rich red running through
deep crannies and crevices
encased inside my skull, too.
Inside the arteries and veins
There lay globules of fat,
a gray hose tangled up tightly
that I could never touch or see
with my own senses
I would have to take it for granted
Take on faith
That my brain looked the same
And acted the same
As everybody else’s
Except when it didn’t.
Exercising Your Options
I procrastinate heavily on my rehab exercises. I would do anything not to do them. Today, in fact, I found myself dumping a paper bag full of buttons I had acquired over the years, and sorting through them. They were the extra buttons you get with the purchase of assorted suits, skirts, blouses, etc. There were all these buttons of different shapes and sizes—fake gold, tiny blue, pick iridescent, huge glossy black, mother of pearl ones.
As usual, I wasn’t mesmerized by the different array of buttons in a pleasing way; I was torn about which ones to keep in an anxious way. I would come back to them throughout the day, and each time I would think, quick, just do a clean sweep into the garbage can, and each time I would think twice and was plagued, almost paralyzed, by indecision. What if I needed the big silver one? That’s the on a suit that I think I still have. And the small black matte ones, I don’t know what kind of clothing they go on, but what if I need them, and they were thrown out? Murphy’s law.
The buttons were spread out on my dresser, like shimmery promises of things to come. Then–light bulb–I made the connection. They were tokens of the suits and blouses and fancy pants I would never wear again, at least not for appropriate occasions. Hell, I could play dress up anytime, but I’d be crushed if anybody asked me what occasion I’d dressed up for. I am afraid of feeling like I’m just fooling myself, or like I had stepped over the line on just this side of crazy.
Exercising Your Options—Part II
Consider the above post as another form of procrastination, as well as this post. The real reason is not just because of the regular form of procrastinating over exercise. That too, but the real, real reason is that every time I go to exercise my arm or leg, I compensate with muscles that are not supposed to be involved. It’s really, really frustrating. Say I go to extend my fingers outward, not only doesn’t my hand do it, but the reverse always happens. My finger extensors don’t work, so when my muscles contract, my body wants to compensate with anything it can, so I feel myself pull my hand into a fist. What the hell?! I try not to let it happen, but it has a mind of it’s own (or lack of mind).
For 40+ years, I knew how to extend my fingers without having to think about at all. And I want my hand to emulate what it already knows how to do, for God’s sake! If I try really hard to relax it and then try to extend my fingers outward, it clenches tightly. If I try it standing up, it clenches. If I try it lying down, it clenches. If I drink a pint of bourbon, it clenches (for argument’s sake). If I try to stretch it passively at first, and then try, it clenches. My own hand makes a mockery of me. There is no way I can do it. I could do a hundred of these exercises, but almost every exercise for arm and hand is in vain.
Punctured Skin
Eastern Medicine/Acupuncture Experience
Dr. Pai took down all of my health background (and it’s complex with my stroke, seizures, dystonia, etc.). He wasn’t sure that he could help me because my central nervous system was damaged (duh), but he would try.
First he tells me hold this short metal rod that is hooked up to a machine, and pricks my fingers and toes, one digit at a time, to get a “reading” while he places an assortment of Chinese herbs on the machine. (The pricking doesn’t involve drawing of blood—I would take exception to that–but it sure feels like it.) When the machine makes a high-pitched sound, he’s satisfied that is the right combination of herbs. I don’t know if it’s purely malarkey or if any science is associated with it, but I just go with it, though I secretly suspect the Chinese medicines he gives me are just sugar pills.
Anyway, then he puts the needles at various points throughout my body (including 2 points in my right hand and right foot and my chin and my throat). I yelped as he dug the needles fishing for the right spot. I got to holding my breath waiting for it to pierce the exact spot which had the most pain! Then he told me to lie there for 15-20 min. Luckily, the pain eased up a lot, and I felt relaxed as he dimmed the lights and put it on meditative, chanting music. After that, he said he thought my right hand was more relaxed, and I spoke a little better, so he was a little optimistic. When I spoke to him I got notably agitated because my hand is almost always more relaxed when I’m lying down, AND I had spoken words that I speak really well (some words I always say better than others).
He said if the acupuncture is to work, it would take a little while. He suggests that I should come twice a week. So, we shall see.
I alternate between skepticism and hopefulness. I have to maintain a high degree of skepticism at all times lest I get hopeful and then have a crushing blow of defeat when I see that my efforts aren’t working.
Moaning and Yelping
♦ Random snippets from my stroke experience..and this one ain’t so good…(It really happened!)
I woke up in a daze. My right leg and arm were in horrible pain. It felt as if I were being stretched way past they were supposed to be, I think. To tell the truth, I can’t remember what kind of pain it was. Throbbing? Burning? Stabbing pain? I try to remember now, but it’s of no use.
I was groggy, and all I could was moan. The moans came out almost involuntarily. I couldn’t speak, literally, like in a nightmare being chased by someone monstrous, but when you open your mouth no words come out. Sometimes I would moan unconsciously. Other times I willed it, and made it loud and incessant. I wanted to convey that I was in enormous pain. If I couldn’t talk, I would scream, moan, yelp.
I would hear the footsteps and voices out in the hospital hallway, and I learned to identify some of the nurses. When the overnight shift would come on, everything would quiet down so my groans became easier to hear. Hospital staff were always coming and out my room. I became aware of the young blonde nurse’s aid (or nurse-in-training?) when she said in an inpatient and angry voice, “Yvonne, quiet the hell up! I don’t want to tell this again.” So I piped up to a louder decibel, at least as loud is I could have made moaning, thinking now I’ve got their attention so they could know how much agony I was in. Then after a few minutes, she came back and growled, “If I tell have to tell you again, you’re not going to be happy about it.”
I must have continued to battle with my uppity, deliberate moans because soon she was back in, “Yvonne, shut the hell up, or I will take care of you!” She sounded disgusted. My moans became fiercer. Then she let the attendant, or the “babysitter” who was supposed to keep watch over me but was oblivious, go on a break. Now that she was alone with me, she whispered eerily, “That’s it. I’m calling the doctor, and he’ll give me something that will make you shut up.” Then, “You wanna die? That’s it, you’re going to die; you are going to die tonight,” with venom in her voice. If it wasn’t so creepy, it would have been comical. I was scared shitless, and quieted down in an instant.
I heard a male doctor’s voice mutter in the hallway to her. When they came in, I could hear he had a very affected voice. I noted he was gay. He said, “You sure. I don’t know? Well, I guess I should give her something that can quiet her down.” There was some rustling. They came back in with another nurse’s aid about her age, with dark hair. She looked down on me thoughtfully and with a little apprehension, as if she were working out some kind of problem. Her blonde colleague, however, had an unabashedly gleeful, smug look on her face. I couldn’t believe it. The distinction between her face and the brunette’s was like looking at night and day, only the one did not see the other. I wanted to scream out to brunette nurses aid, “LOOK, she is SMIRKING at my situation…and she’s about to commit murder!”
The young doctor said nervously, “Oh my God. I’ve never done this before. Oh my God. Well, I have to go through with it.” He was nervous looking at the nurse’s aid for reassurance! Finally, he gave me an injection, and I was practically hyperventilating while holding absolutely still, lest they think I was being uncooperative. I stiffened up.
When they left the room, the blonde came back in and started rushing around to prepare another needle. She stabbed me in lower ankle. Then she got another needle prepared and stabbed me a second. She left the room and came back with another needle and another one. She was hurrying, and she scared the living daylights out of me. I literally thought I was sure to die that night.
I don’t know what the injections were, but I started to shake. I could only guess it was Haldol, an anti-psychotic. I stayed awake for as long as I could, petrified, waiting for my own death to arrive. Nobody would know that I died at hands of that pathologically evil bitch who was supposed to be nursing me back to health! The next morning, however, I was stunned to wake up alive….
Gait: Walking through my Gate
I have a confession to make if you want to hear about the whole damn story. After a long bout of suicidal depression, I went into NYU hospital in early spring to change my seizure meds. My boyfriend and my sister were convinced my seizure medicine, Keppra, sent me spiraling downward, so much so that I didn’t want to live anymore. (The package insert says that the Keppra could lead to thoughts of depression and suicidal ideation, as it says with every anti-seizure medications and every anti-depressant because the FDA has them do it.) I held then–and I still hold it now–that it was more that. I realized more and more that my rehab. progression had slowed to a simmering halt on all fronts, that I was moving backward, if anything.
In changing my medicine, I had a bunch of seizures, including one grand mal. Because I was incredibly plagued by suicidal thoughts, they try to change it too quickly. After a long stay in the hospital (it takes 6 weeks to switch to Lamicdal because they want to prevent a fatal rash from occurring—although with my state of mind—I would have preferred the fatal rash.).
After I got out of the hospital, my gait on my right side had a pronounced limp. When I asked my neurologist about how my leg had gotten so much worse, he said that all the seizures had created an “insult” to my brain, and exacerbated the repercussions of my stroke. Aaaggggggghhhhhhhhhh!!! was my response back then and it’s still my response today. I cannot tell you how much it upsets me, but damn I’m going to try.
In my head, I make no human sound. It comes gurgling deep within a primitive being–from a boiling abyss. From a winter’s blizzard whiteout where there is no sound, sight, or sense and has never been. Aaagggghhhhhhhhhhhhhhhh! I see pictures of myself in my mind’s eye, I have been irreversibly damaged again, I can’t run and I can barely walk. Walking takes great effort for me. I feel wobbly and I zig-zag to the side. I have to lift my leg from the hip every step, lest my whole foot scrapes upon the ground or I fall.
I cannot hide my disability. Everyone sees that I am a cripple. They feel sorry for me, or they thank god I don’t walk like that, or they stay away from me thinking that they might catch it or they don’t even see me; I am a non-entity, irrelevant. I can’t run (fight or flight response is still working though) I can’t even walk straight, and without calibrating every step. Every man deserves the most basic right, the ability to get from here to there through walking, doesn’t she or he?! That’s what separates man from animal, the ability to walk on 2 legs instead of 4. Well that, and the opposable thumb. (I know, tell that to people to disabled people in wheelchairs or worse.)
I know that despite this sounding so self-pitying, I finally felt a little better in June. I feel a little more alive, bud-like after being dormant for a hopeless eternal winter. Thus, I am able to write again.
I once read a short story by Kafka called, “Before the Law.” It was brilliant. A man stood before the gates of heaven presumably or at least where God judged him, but he had to pass the doorkeeper first, but each doorkeeper following him was more powerful and terrible than the last. So he decides to sit and wait until the doorkeeper’s allows permission for him to enter “the law” (whatever that means). There he sits for days and days becomes years, until he gets very old and teetering, and he knows he going to die soon. He asks the doorkeeper one last question, “so how does it happen that for all these many years no one but myself has ever begged for admittance but me.” The doorkeeper answers, “No one else could ever be admitted here, since this gate was made only for you. I am now going to shut it.” It sent chills up my spine because I realized we all have our own particular fears, demons, struggles that are in a vacuum for ourselves. We can waste a whole lifetime trying to fight or extinguish fears and struggles and our inhibitions are, to a great extent, only in our anticipations and imaginations. It is to our detriment that if we don’t learn that lesson. The only one judging who matters in the end is yourself. (Hence the title.)
Rememorial Day 2010
Warning: this is not going to be, say, perky. I’m in a measured mood, but reality sucks. At least for this entry it is. Maybe I can change my own mind…lord knows I try…and fail…and try again.
I haven’t written for a very long time. Reason being I went through a major depression when I realized that anticipated plans for my recovery came to a halting standstill. I realized that my right arm wasn’t getting any better, despite all I had done to get it back—for many, many months. Despite being able to raise my hand to elbow level, my arm and hand served no useful purpose. My fingers and thumb curl into a kind of fist but they cannot be released once curled (in other words, I can’t get them to flex outward). They have to be released with my left hand, which is besides the point.
My hit-or-miss pronunciation and articulation (I see it as garbled every few words), speed (as slow as molasses), and inflection (uh, monotone) was not getting any better. (It’s gotten a tad bit better, almost imperceptibly, in terms of fluidity and intonation, but I failed to recognize that in my depression.)
Worse yet, my right leg had developed a pronounced foot drop now. I hobble around now, with my right leg swinging outward and awkwardly in place. It forces me to walk more slowly and I have to think about each step now. Nobody knows how this happened, just as nobody knows how the stroke happened in the first place.
Despite all of the above, I know it could be worse. I get reminded of that every so often by my friend Andy who suffered a stroke not unlike mine, who I perceive as very optimistic (although he says you never really get over it), who advocates for disabled people, people who are “better” off than he, and people who are “worse” off than he. It’s all relative. I am reminded of the movie “The Diving Bell and the Butterfly” where a man who was completely paralyzed, couldn’t speak, and blind in one eye, wrote the story of his life all through blinking with good eye in some sort of Morse Code. Unbelievable. If he could think of doing something productive and artful, surely I can make a contribution that will be helpful and meaningful.
And I think all kinds of suffering, including fatal diseases (specifically ALS, which is what my grandmother died from). My rehab doctor tells me that at least I can pee by myself, and for that I can be thankful. Some stroke survivors can’t do anything for themselves and have to pee into a diaper. It only makes it better for a short while and I go back to feeling so much loss that it’s next to impossible to bear. But bear I must. Andy said he’s surprised that with the intelligence, powers of persuasion and perseverance that I brought to bear in my job, he would have thought I’d view it as a challenge living with one arm to do the work. That’s a good way of looking at it. It’s very hard when all around I see people with both arms functioning, without a limp (“foot drop”), and a normal voice. But it could be worse (said like a refrain, but NOT like mantra). Can I take consolation in that? It remains to be seen.
I know this all sounds like I’m throwing the damnedest pity party for myself. It’s tempting, pitying yourself, but it doesn’t do me a whole lot of good. In fact, the opposite, not pitying myself, makes me feel empowered, uplifted, solution-oriented, like I do almost anything.
P.S. The title of this post refers to a painting at The Whitney Biannual which had trees with the made-up word “rememories” running through it like snakes in the garden of eden. I am writing this on Memorial Day 2010.
Aphasia: Part 2
I talk in monotone. They call it “prosity,” the lack of inflection in one’s voice. There’s nothing funny about that, but perhaps I don’t see the humor in it yet. It only adds to my flat affect, oh boy…I don’t know anyone else with this problem, which makes me feel deeply isolated.
I have aphasia.
I stutter and talk in fits and starts
and I can’t think of the right word to say.
Like a dim light in the distance,
the right word sways and bounces
and then vanishes.
I live in two worlds. Pre-stroke and post. The one where I matter, and the one where I feel irrelevant. Healthy and disabled. Half of my body is able and half has the disability. Binary opposites. (I can’t move my right arm or hand for anything practical at all.) But all of my speech is affected (it’s relentless; I cannot get away from myself) ….and my cognition and my desire—all kinds of desires. My desires are not completely extinguished but almost.
Beryl said, “Let the dust settle, be kind to myself, don’t perform, be genuine cause that you connects to other people; right now be selfish. Don’t think of what anybody wants you to say. (I’ve taken to italicizing my words to emphasize them. Even in my writing I’m afraid that the words will echo my speech in its flatness. I don’t hear it, the flatness, because I’m struggling to just to pronounce the various sounds.)
Howling through the Madness/Sadness
I cannot cry. It used to be that I would cry even at the lamest, most saccharine movies. I would perceive emotion that I would project onto the screen’s characters, but now I can’t. I wonder why that is. I feel only blankness, alternating with fear and anxiety and a whole host other emotions like confusion and hopelessness. I feel dumb. I am riddled with self-doubt. I don’t know who I am anymore. It’s as if a brutal snowy wind were whipping through my mind, my soulless mind. I feel like my mind is soulless, but it’s just that the volume is turned way down. Almost mute. But not quite. I should feel the agony and echo of deafening losses. But I cannot cry. Not yet.
Yesterday, I saw Beryl, and when she asked me how it would feel to cry. (I was glad I could generate the word “howl,” Thank G-d for small favors.) I said I want to howl with sadness. I feel like a ghost of my former self. It’s just as well I said “howl” because I feel akin to an animal. A dog or a wolf. I am jealous of even dogs I pass trotting down the sidewalk on their haunches who have the use of all four of their legs. Maybe jealousy will lead to anger, but first I have to process the feelings of loss. I feel unhinged. (There you have it, a brutally honest account of what’s happening port-stroke almost a year out. I am hoping against hope that things will turn around for me….)
Chicanery
I wrote this to Bindu tonight, “I don’t think there’s any hope for me. I even tried to watch “House” with Sherri, and I’m recognizing increasingly that my cognition is way lacking. I couldn’t keep up with the show, although I enjoy it. It was whizzing past me–although I think I got the jokes. But everything reminds me of my deficits, my speech, my arm, my memory, inability to pay attention, inability to conjure up words, etc. It’s quite painful and sad–to think of what I was and could have become still. I don’t think it’s because of my emotional state. My brain isn’t working so well, now, because of the massive stroke.
“Chicanery” means trickery, deception. Life is full of chicanery, isn’t it?
(Originally written on the February 5th.)
Another Day in Paradise 
