CHAPTER 12 WHAT IT IS LIKE TO BE PARALYZED AND MUTE
First of all, I should explain exactly what is wrong with me. When the inner lining of my basilar artery came apart, it destroyed my center of motor control, leaving me quadriplegic and mute. Only my eyelids were not affected. My center of emotional control was also severely damaged, leaving me extremely labile. My senses, including touch, were not affected. Neither was my mind, including my memory, which is very good. People, especially little children, often ask me what it feels like to be paralyzed.
First of all, everything feels very heavy, almost as if I were glued down. Second, it is like someone just cut most of the control wires. I can't even try to move most muscles - I can't do anything at all. To the extent I can move anything, it tires me out immediately - something which is very foreign to me - I used to be a long distance runner. My limbs are still partially wired - I have a little movement in all of them, very little. At night my limbs sometimes lie so still I begin to get sores - I feel the pain but can't move enough to relieve them. That is the blessed curse of my situation - I can feel pain but can't do anything about it except eventually signal for help. In this way I can avoid serious injury in the long run.
Powerlessness goes hand in hand with being disabled. One day I was a 6'4", 200 Lb. executive whom people didn't bother very often, and when I woke up from my coma I couldn't even go to the bathroom by myself. Anyone could do anything they wanted with me. Let's say I was in my wheelchair and my attendant got busy. They would just leave, regardless of what I needed. It was always about what they wanted and never about what I needed. After awhile I got used to it - there is no point in fighting it because there was often no way to even express what I needed. If I got too excited because of frustration, the doctors just inject me with morphine until I quiet down, because that is generally easier for them than to figure out what is frustrating me (they don't do it to be mean). It feels very much like dog training - if you don't behave the way they want you to, they assume something is wrong with you. My wife was one of the few people I see everyday who actually takes the time to figure out my point of view. Not that she always agrees with me, but that's something else entirely. . . that is when she tells people the stroke affected my brain :).
I had always been fiercely independent, probably to a fault. With one stroke I became completely dependent for everything - eating, drinking, going to the bathroom, scratching itches, etc. I would, to this day, literally die if someone weren't around to help me, 24 hours a day. Most of us are able to take control over our own bodies for granted. Not me. Every single thing I want done, I have to ask someone else to do and depend on them to do it. They get tired of it. So do I, but whereas they can walk out of the room or pretend not to see my gestures, I cannot escape. People say I am very patient, and I am. It is only partly due to my nature. The basic truth is, I have no choice. If I get impatient, people either leave me alone and tell me to do it myself (which I obviously can't) or, if they are medical, they have a doctor inject me to calm me down. That only happened once. I learn fast.
Another thing that disappears when you go mute is any type of 'presence' you may have had. People treat you as helpless, which of course you are. Forget trying to be forceful or even persistent. Hey, you are lucky to even get your point across. No one can follow complex thoughts on the board I communicate with, so I am forced to reduce everything to basic thoughts. Typing with the head tracker does afford me the luxury of more complex thought, but it is nonetheless a terrible medium for urgency since it is inherently two dimensional. If you do try to show emotion through capitalization and punctuation, and people don't agree with you, they don't argue back. They just ignore your point of view and don't let you type anything else. Being quadriplegic and mute pretty much reduces you to being treated like an animal by most people.
If you go to the far end of the spectrum, to complete strangers, it is often worse. They treat you as if you don't exist, or are addled. I have had people wave their arms in my face, screaming at me as if I were deaf AND stupid. People often instinctively raise their voice. Occasionally someone will actually see me as a human being and talk TO me. A few people (complete strangers)have even been fascinated with the whole thing and have learned how to use the board to have a conversation with me. But that is pretty rare. Keeping my self esteem up is sometimes hard (although that is always a fleeting phenomenon with me). When I realize someone wants to ignore me, I usually just zone them out or imagine what it would be like if the tables were turned. I have even watched as people tried to take advantage of us. That is usually a mistake with Jane.
I guess the best way for me to summarize what it is like to be mute and quadriplegic is to think of a dog. In a word, it is very dehumanizing. Dogs can't talk, so many people assume 1) they are pretty stupid compared to people who can (I know some people who might be exceptions), and 2) that they have no emotions. Their behavior is shaped by obeying orderS to get treats. They like to have their heads rubbed. If people get tired of them, they put them in a room and leave. All of this could be said about me, especially when I am around only strangers. Around people who knew me before my stroke, it is different. They assume I am still at least partly the person I always was.
First of all, I should explain exactly what is wrong with me. When the inner lining of my basilar artery came apart, it destroyed my center of motor control, leaving me quadriplegic and mute. Only my eyelids were not affected. My center of emotional control was also severely damaged, leaving me extremely labile. My senses, including touch, were not affected. Neither was my mind, including my memory, which is very good. People, especially little children, often ask me what it feels like to be paralyzed.
First of all, everything feels very heavy, almost as if I were glued down. Second, it is like someone just cut most of the control wires. I can't even try to move most muscles - I can't do anything at all. To the extent I can move anything, it tires me out immediately - something which is very foreign to me - I used to be a long distance runner. My limbs are still partially wired - I have a little movement in all of them, very little. At night my limbs sometimes lie so still I begin to get sores - I feel the pain but can't move enough to relieve them. That is the blessed curse of my situation - I can feel pain but can't do anything about it except eventually signal for help. In this way I can avoid serious injury in the long run.
Powerlessness goes hand in hand with being disabled. One day I was a 6'4", 200 Lb. executive whom people didn't bother very often, and when I woke up from my coma I couldn't even go to the bathroom by myself. Anyone could do anything they wanted with me. Let's say I was in my wheelchair and my attendant got busy. They would just leave, regardless of what I needed. It was always about what they wanted and never about what I needed. After awhile I got used to it - there is no point in fighting it because there was often no way to even express what I needed. If I got too excited because of frustration, the doctors just inject me with morphine until I quiet down, because that is generally easier for them than to figure out what is frustrating me (they don't do it to be mean). It feels very much like dog training - if you don't behave the way they want you to, they assume something is wrong with you. My wife was one of the few people I see everyday who actually takes the time to figure out my point of view. Not that she always agrees with me, but that's something else entirely. . . that is when she tells people the stroke affected my brain :).
I had always been fiercely independent, probably to a fault. With one stroke I became completely dependent for everything - eating, drinking, going to the bathroom, scratching itches, etc. I would, to this day, literally die if someone weren't around to help me, 24 hours a day. Most of us are able to take control over our own bodies for granted. Not me. Every single thing I want done, I have to ask someone else to do and depend on them to do it. They get tired of it. So do I, but whereas they can walk out of the room or pretend not to see my gestures, I cannot escape. People say I am very patient, and I am. It is only partly due to my nature. The basic truth is, I have no choice. If I get impatient, people either leave me alone and tell me to do it myself (which I obviously can't) or, if they are medical, they have a doctor inject me to calm me down. That only happened once. I learn fast.
Another thing that disappears when you go mute is any type of 'presence' you may have had. People treat you as helpless, which of course you are. Forget trying to be forceful or even persistent. Hey, you are lucky to even get your point across. No one can follow complex thoughts on the board I communicate with, so I am forced to reduce everything to basic thoughts. Typing with the head tracker does afford me the luxury of more complex thought, but it is nonetheless a terrible medium for urgency since it is inherently two dimensional. If you do try to show emotion through capitalization and punctuation, and people don't agree with you, they don't argue back. They just ignore your point of view and don't let you type anything else. Being quadriplegic and mute pretty much reduces you to being treated like an animal by most people.
If you go to the far end of the spectrum, to complete strangers, it is often worse. They treat you as if you don't exist, or are addled. I have had people wave their arms in my face, screaming at me as if I were deaf AND stupid. People often instinctively raise their voice. Occasionally someone will actually see me as a human being and talk TO me. A few people (complete strangers)have even been fascinated with the whole thing and have learned how to use the board to have a conversation with me. But that is pretty rare. Keeping my self esteem up is sometimes hard (although that is always a fleeting phenomenon with me). When I realize someone wants to ignore me, I usually just zone them out or imagine what it would be like if the tables were turned. I have even watched as people tried to take advantage of us. That is usually a mistake with Jane.
I guess the best way for me to summarize what it is like to be mute and quadriplegic is to think of a dog. In a word, it is very dehumanizing. Dogs can't talk, so many people assume 1) they are pretty stupid compared to people who can (I know some people who might be exceptions), and 2) that they have no emotions. Their behavior is shaped by obeying orderS to get treats. They like to have their heads rubbed. If people get tired of them, they put them in a room and leave. All of this could be said about me, especially when I am around only strangers. Around people who knew me before my stroke, it is different. They assume I am still at least partly the person I always was.
posted by hevans at 6:24 PM
1 Comments:
I cried reading this, as I thought of my own frustrations with my father who has had a stroke and struggles with speech. Thank you again for this opportunity!
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