This is the worst day I've had in weeks. I am really wobbly, like a "drunken sailor." It started yesterday. I was at the store, seeking sponsorship for an event I will be holding for the Heart and Stroke Foundation, standing at the counter. Without even changing position, which normally has to happen before I lose my balance, I started tipping over in slow motion, then I quickly grabbed the counter for support and stood upright again. An elderly lady using a walker was also at the counter. She asked me if I was okay.
"I'm fine thanks," I said. "I just don't have the greatest balance."
After that I did a lot of walking to other businesses to seek sponsorship on my way home. I tipped over a couple of times again on uneven parts of the sidewalk. My legs became very sore and pretty fatigued too, but not to the point of shuffle walking. I could lift up my legs pretty easily. Today I'm shuffle walking.
I'm having a lot of other symptoms today, like I'm REALLY tired.. So tired I feel like I haven't slept in two days. I'm also constipated, a bit nauseous, my neck is really stiff and sore and my heart has been racing.
I didn't go to class today and I'm feeling really guilty about it. I've missed SO many classes, but I'm doing really well in all of my courses. This is a good thing, but still, whenever I contemplate staying home from school, I tell myself: Ashley, you're fine. Go to school. You're just imagining that it's bad. You probably just didn't sleep well. Then throughout my day of absence, I tell myself: You've been through worse. If you stayed home every time you felt sick, you wouldn't have a life. I also spend the day wondering if my family, classmates, instructors and friends think I'm faking it and slacking off.
I have a big assignment due tomorrow, but all I want to do is rest. It's okay. Tomorrow afternoon I will come home and rest through my long weekend. I may even enjoy it, if I feel a bit better. I must not get stressed about it, though. Ticker won't like it, plus stress will make me more wobbly and prevent me from sleeping and eating enough.
Anyway, I'm going to nap for at least a few hours before I get to work on my assignment. Feeling this way is so distracting, though. I don't imagine I will do too well on it.
Wednesday, March 31, 2010
Sunday, March 28, 2010
Attitudes, Perceptions and Expectations
I've been thinking about what shapes attitudes towards my health experiences and perceptions that I am a very strong, brave person. Either hero or victim -- sick people tend to be defined by one of those.
I think the anecdotal evidence I provide about my situation hints to health problems more serious than what I am actually going through. Really, I'm very active and require no further treatment. Medically speaking anyway. But as my med student friend said to me, "meds (or any treatment) artificially putting you there doesn't count as health." I try to remember this when I feel awful. I shouldn't be content with treatment just because it has taken me out of danger. Doctors and others can minimize my situation all they want, but I've been through a lot and I continue to have symptoms and challenges. I have always felt so lucky that I've mostly evaded danger that I feel I should just be content with my "luck." Keep in mind that my "luck" has been defined by the typically "unlucky" experiences by people with conditions or treatments similar to mine. "Luck" also assumes that the medical component of my experiences influences the emotional components.
In my Health and Society classes, I studied Talcott Parsons, who had a theory called the "sick role." Basically, sick people are expected to fulfill certain social rights and obligations, including accepting that they are not able to participate "normally" in society. For example, if you are sick, you are obligated to stay in bed and avoid "normal" function. If you do not adhere to these rights and obligations, you are considered deviant, meaning you don't want to get better or are burdening society. The "sick role" disturbs me because it implies that sick people only have needs based on their medical situation, that they don't require greater fulfillment than to heal. The "sick role" not only disregards the broader needs of individuals such as the need to feel part of society and the need to entertain oneself; it also disregards the obligations the sick person must put on hold to get well and the repercussions of that. Missing work can mean a loss of income or an inability to take care of one's children. Illness can also cause boredom and loneliness.
I've been thinking about how deviant I've been since I started school in January. How dare I inconvenience people I work with by missing classes because of illness. Why didn't I just wait to get better before I started school? Well, I could spend my whole life waiting. Yes, this Post-Viral Syndrome will go away, but my other conditions likely won't. Instead, it is best that I seek accommodations to live actively while avoiding overdoing it.
People like me who have invisible health problems, especially those whose symptoms are not quantifiable by medical testing, may also face stigma: accusations of faking illness for attention or to avoid obligations. I have been facing this in my own life this year. I never thought I would, though, because I have medical proof of my difficulties. Perhaps providing this proof, or at least fully disclosing my medical situation, could have helped me avoid implied accusations of skipping classes or being lazy, not participating. I have images of myself throwing my CT scans at insensitive people, pouring heart medications in front of them. Disclosure is such a scary thing, though. It has conditioned people to think I am weak and delicate, less capable (even less willing) to do certain things. Disclosure also puts me at risk of being accused of looking for attention, exaggerating or trying to evade responsibility.
Many times, I have regretted disclosing my issues because I feel badly for subjecting myself to attitudes like the ones I've just mentioned. I dislike statements like "You look good!" This implies:
a) That I should be glad that I at least don't look sick
b) That my claims to illness can't be valid because I don't fit the profile of a sick person
c) That my healthy appearance overshadows the suffering I endure
Perhaps I "look good" because I am happy most of the time? Perhaps it is difficult to conceive that I am happy despite feeling sick?
I must confess that there have been many times in my life that I have wanted to look sick or to have some sort of medical catastrophe. At least then, I will KNOW I have every right to claim suffering and everyone else will too. I am still paranoid that I'm imagining symptoms. I am over-concerning myself with what other people might think of me.
I often tell people I'm sick or have health issues, but I get nervous about it. Can you blame me?
I think the anecdotal evidence I provide about my situation hints to health problems more serious than what I am actually going through. Really, I'm very active and require no further treatment. Medically speaking anyway. But as my med student friend said to me, "meds (or any treatment) artificially putting you there doesn't count as health." I try to remember this when I feel awful. I shouldn't be content with treatment just because it has taken me out of danger. Doctors and others can minimize my situation all they want, but I've been through a lot and I continue to have symptoms and challenges. I have always felt so lucky that I've mostly evaded danger that I feel I should just be content with my "luck." Keep in mind that my "luck" has been defined by the typically "unlucky" experiences by people with conditions or treatments similar to mine. "Luck" also assumes that the medical component of my experiences influences the emotional components.
In my Health and Society classes, I studied Talcott Parsons, who had a theory called the "sick role." Basically, sick people are expected to fulfill certain social rights and obligations, including accepting that they are not able to participate "normally" in society. For example, if you are sick, you are obligated to stay in bed and avoid "normal" function. If you do not adhere to these rights and obligations, you are considered deviant, meaning you don't want to get better or are burdening society. The "sick role" disturbs me because it implies that sick people only have needs based on their medical situation, that they don't require greater fulfillment than to heal. The "sick role" not only disregards the broader needs of individuals such as the need to feel part of society and the need to entertain oneself; it also disregards the obligations the sick person must put on hold to get well and the repercussions of that. Missing work can mean a loss of income or an inability to take care of one's children. Illness can also cause boredom and loneliness.
I've been thinking about how deviant I've been since I started school in January. How dare I inconvenience people I work with by missing classes because of illness. Why didn't I just wait to get better before I started school? Well, I could spend my whole life waiting. Yes, this Post-Viral Syndrome will go away, but my other conditions likely won't. Instead, it is best that I seek accommodations to live actively while avoiding overdoing it.
People like me who have invisible health problems, especially those whose symptoms are not quantifiable by medical testing, may also face stigma: accusations of faking illness for attention or to avoid obligations. I have been facing this in my own life this year. I never thought I would, though, because I have medical proof of my difficulties. Perhaps providing this proof, or at least fully disclosing my medical situation, could have helped me avoid implied accusations of skipping classes or being lazy, not participating. I have images of myself throwing my CT scans at insensitive people, pouring heart medications in front of them. Disclosure is such a scary thing, though. It has conditioned people to think I am weak and delicate, less capable (even less willing) to do certain things. Disclosure also puts me at risk of being accused of looking for attention, exaggerating or trying to evade responsibility.
Many times, I have regretted disclosing my issues because I feel badly for subjecting myself to attitudes like the ones I've just mentioned. I dislike statements like "You look good!" This implies:
a) That I should be glad that I at least don't look sick
b) That my claims to illness can't be valid because I don't fit the profile of a sick person
c) That my healthy appearance overshadows the suffering I endure
Perhaps I "look good" because I am happy most of the time? Perhaps it is difficult to conceive that I am happy despite feeling sick?
I must confess that there have been many times in my life that I have wanted to look sick or to have some sort of medical catastrophe. At least then, I will KNOW I have every right to claim suffering and everyone else will too. I am still paranoid that I'm imagining symptoms. I am over-concerning myself with what other people might think of me.
I often tell people I'm sick or have health issues, but I get nervous about it. Can you blame me?
Saturday, March 27, 2010
I'm Twin B
I have zero appetite today. In a few hours I will go to my sister's apartment-warming party! I've only been with her there once, after she furnished and decorated it. She seemed so adult, giving me her laptop to use, then a juice box and a box of crackers. I felt like her little sister. I technically am -- she is three minutes older. Oh, and she has a grown-up job with an office and a salary. I'm still a student living at home. Bah, I am jealous!
My theory is that the big sister/little sister dynamic always exists, no matter what the difference in age between sisters. My sister has always been more independent and concerned for my well being. My mom tells this story: once when I was in the hospital when we were very young, my sister said to my mom. "Don't let them (doctors, presumably) hurt my sister." I don't know if I was getting my tonsils out, bi-lateral hernia repaired (yes, when I was potty training, I had two hernias at the same time: complication related to my hydrocephalus). Maybe I was getting brain tests or had an asthma attack -- who knows.
There's video of us dancing around in a circle onstage during a ballet recital. I was struggling to keep up to her. How symbolic!
But there are times that I've played the older sister, like helping her with homework or taking care of her when she was sick. I still do that. I do feel maternal in that situation because I handle illness so much better than she does: experience, I guess. Also, I like the role reversal: yay, sometimes I'm the nurse instead of the patient! Then I get to take care of someone. I know how important it is to have a nurturing caregiver.
Tonight I'm going to try not to feel too much like her baby sister. I may even dress up! I should wear my glasses. They make me look and feel more mature. My vision is a bit blurry today anyway. I'm having to work harder than usual to maintain my focus. Maybe this is because I'm tired? Who knows. I'll also try not to get crumbs on her couch again... If I don't wear my glasses, I can just tell her I didn't see the crumbs, but then she will still want to know how I managed to get so many crumbs there in the first place. We don't even live together anymore -- haven't in months -- but the big sister/little sister dynamic is still there!
My theory is that the big sister/little sister dynamic always exists, no matter what the difference in age between sisters. My sister has always been more independent and concerned for my well being. My mom tells this story: once when I was in the hospital when we were very young, my sister said to my mom. "Don't let them (doctors, presumably) hurt my sister." I don't know if I was getting my tonsils out, bi-lateral hernia repaired (yes, when I was potty training, I had two hernias at the same time: complication related to my hydrocephalus). Maybe I was getting brain tests or had an asthma attack -- who knows.
There's video of us dancing around in a circle onstage during a ballet recital. I was struggling to keep up to her. How symbolic!
But there are times that I've played the older sister, like helping her with homework or taking care of her when she was sick. I still do that. I do feel maternal in that situation because I handle illness so much better than she does: experience, I guess. Also, I like the role reversal: yay, sometimes I'm the nurse instead of the patient! Then I get to take care of someone. I know how important it is to have a nurturing caregiver.
Tonight I'm going to try not to feel too much like her baby sister. I may even dress up! I should wear my glasses. They make me look and feel more mature. My vision is a bit blurry today anyway. I'm having to work harder than usual to maintain my focus. Maybe this is because I'm tired? Who knows. I'll also try not to get crumbs on her couch again... If I don't wear my glasses, I can just tell her I didn't see the crumbs, but then she will still want to know how I managed to get so many crumbs there in the first place. We don't even live together anymore -- haven't in months -- but the big sister/little sister dynamic is still there!
Monday, March 22, 2010
Reform = Humanity
The health-care bill was passed! Amazing. Why do so many people oppose it? Yes, it's socialist. Insurance by its very nature is socialist: many contribute to provide for the the people who need it. School is socialized in the U.S. Why don't anti-reformers raise their arms up about that? How can they support so many tax dollars going to that ludicrous war in Iraq and not support health care access for their fellow human beings?
I watched some disturbing footage the other day of an anti-reform demonstration where demonstrators were throwing fake currency at a man in a wheelchair, telling him to pay for his own health care. What?! This is beyond inhumane. I cannot conceive why anyone would think another person deserves to go bankrupt because of health costs or deserves to be denied health coverage because of pre-existing conditions. It happens all of the time in the U.S. -- even to children. It easily could have happened to me.
How would my parents have provided my medical care throughout my entire life -- all of the CT and MRI scans, hospital stays, surgeries, doctors visits, medications, etc.? I really can't fathom it. Thousands and thousands and thousands of dollars. As if sick people don't have enough to deal with.
Yeah, Michael Moore's presentation of Canada's healthcare in "Sicko" was biased. Our system isn't perfect. The government doesn't cover prescriptions, leaving many without adequate insurance to pay thousands of dollars in drugs. Wait times are huge. Many people don't even have family doctors. Still, we must be doing something right because I'm still here. I was never denied anything. Then there's other government run programs like ODSP that provides income to people who cannot work due to profound illness or disability. They only get about $500 a month to live on.
Of course anti-reformers aren't interested in higher taxes. There's also a strong perception that the quality of health will go to *#&% once the government gets involved. Well, insurance companies will have no cap to charge. Perhaps access will be limited. At least some of the insurance companies' power will be reduced: from what I've heard, people like me will no longer be allowed to be denied health insurance. That's at least a start, right? Changes will take years to take effect anyway. My thoughts will remain with those who don't have access.
I watched some disturbing footage the other day of an anti-reform demonstration where demonstrators were throwing fake currency at a man in a wheelchair, telling him to pay for his own health care. What?! This is beyond inhumane. I cannot conceive why anyone would think another person deserves to go bankrupt because of health costs or deserves to be denied health coverage because of pre-existing conditions. It happens all of the time in the U.S. -- even to children. It easily could have happened to me.
How would my parents have provided my medical care throughout my entire life -- all of the CT and MRI scans, hospital stays, surgeries, doctors visits, medications, etc.? I really can't fathom it. Thousands and thousands and thousands of dollars. As if sick people don't have enough to deal with.
Yeah, Michael Moore's presentation of Canada's healthcare in "Sicko" was biased. Our system isn't perfect. The government doesn't cover prescriptions, leaving many without adequate insurance to pay thousands of dollars in drugs. Wait times are huge. Many people don't even have family doctors. Still, we must be doing something right because I'm still here. I was never denied anything. Then there's other government run programs like ODSP that provides income to people who cannot work due to profound illness or disability. They only get about $500 a month to live on.
Of course anti-reformers aren't interested in higher taxes. There's also a strong perception that the quality of health will go to *#&% once the government gets involved. Well, insurance companies will have no cap to charge. Perhaps access will be limited. At least some of the insurance companies' power will be reduced: from what I've heard, people like me will no longer be allowed to be denied health insurance. That's at least a start, right? Changes will take years to take effect anyway. My thoughts will remain with those who don't have access.
Sunday, March 21, 2010
At this rate...
Sometimes I take my pulse before and after I take one of my heart medications if it's slow enough that I can't feel it beating. This is to make sure the medication doesn't make it too slow. A nurse I know taught me this. My cardiologist sure didn't. He didn't even tell me about precautions I have to take to maintain the level of Digoxin in my blood which can drop to an ineffective level or rise to a toxic one with certain foods, illness, etc.
Well, for a couple of days, the ticker was nice and slow! Without episodes, I feel very energetic and able to eat and get to sleep comfortably. I really enjoyed it, but I was concerned that the medication might start to work too well. My heart rate changes: sometimes I have fast periods, or periods when my heart goes crazy easily and sometimes I have slower periods like this one. A "good" period typically has my heart in the late 80s, but during this period I even found it below 70 beats per minute!
Unfortunately, I'm going into a bit of a fast period. This one has me slightly abnormal sitting down and more so when I'm standing or walking. I am really disappointed, especially because my fatigue on stairs will likely worsen and sugar/carbs will really get me going. Also, my heart will probably get faster before it gets slower.
I'm not the least bit uncomfortable right now. It's fine, but still I'm conscious of my health issues! Even though I feel fine! And I was also conscious when I felt great because I was monitoring the situation. I wasn't sure if I should write this entry because I thought it might make me seem paranoid. Well, I think anyone who has health issues, whatever they may be, is likely to notice patterns. This is a good thing: it helps you prepare for bad periods and figure out what you need to do to feel better. I am so attuned to my body, but right now I don't want to be.
See, because I notice patterns, I tend to beat myself up when a symptoms seems to be triggered. I assume that it's my fault. If my neck is really sore and stiff, I assume that I just slept awkwardly, have had bad posture or not stretching enough, even though I have spinal problems. Or if my heart gets crazy, I get angry with myself for having popcorn. I make the symptoms my fault.
I used to think I just blame myself because I want to feel better. Really, I want to think that my symptoms are completely within my control.
Note: It's later in the day and ticker is awesome again, despite eating the rest of mom's Swedish Berries.
Well, for a couple of days, the ticker was nice and slow! Without episodes, I feel very energetic and able to eat and get to sleep comfortably. I really enjoyed it, but I was concerned that the medication might start to work too well. My heart rate changes: sometimes I have fast periods, or periods when my heart goes crazy easily and sometimes I have slower periods like this one. A "good" period typically has my heart in the late 80s, but during this period I even found it below 70 beats per minute!
Unfortunately, I'm going into a bit of a fast period. This one has me slightly abnormal sitting down and more so when I'm standing or walking. I am really disappointed, especially because my fatigue on stairs will likely worsen and sugar/carbs will really get me going. Also, my heart will probably get faster before it gets slower.
I'm not the least bit uncomfortable right now. It's fine, but still I'm conscious of my health issues! Even though I feel fine! And I was also conscious when I felt great because I was monitoring the situation. I wasn't sure if I should write this entry because I thought it might make me seem paranoid. Well, I think anyone who has health issues, whatever they may be, is likely to notice patterns. This is a good thing: it helps you prepare for bad periods and figure out what you need to do to feel better. I am so attuned to my body, but right now I don't want to be.
See, because I notice patterns, I tend to beat myself up when a symptoms seems to be triggered. I assume that it's my fault. If my neck is really sore and stiff, I assume that I just slept awkwardly, have had bad posture or not stretching enough, even though I have spinal problems. Or if my heart gets crazy, I get angry with myself for having popcorn. I make the symptoms my fault.
I used to think I just blame myself because I want to feel better. Really, I want to think that my symptoms are completely within my control.
Note: It's later in the day and ticker is awesome again, despite eating the rest of mom's Swedish Berries.
Thursday, March 18, 2010
Something Happened
I have felt really happy for the past four days. This is the kind of happiness that makes me smile all day for no reason. Just yesterday my classmate commented that I had been laughing while writing an in-class assignment. She said, "I didn't understand what could possibly be funny about this." I don't even know why I was laughing. It just happens when I'm happy. Everything, even a dry assignment, seems to amuse me. This is classic Ashley. Man, how I missed her.
My body, perhaps coincidentally, has been treating me very well. It seems to have influenced my mind. I can think of nothing else that would account for this positive mood change. Nothing in my life is different. I just feel good, generally. I feel excited about the event my group is hosting, my Florence and the Machine concert and my trip to Hawaii next month. I knew these things would happen months ago, so why am I only just getting excited now? It's not like these things are happening next week. There's still a bunch of time left.
I'm thinking that maybe I'm excited because I'm able to imagine myself having the energy necessary to fully enjoy concerts, holidays and parties. I think socializing is an all-or-nothing thing for me. Either I'm completely present mentally (if I feel well physically) or I'm very distant. When I feel sick, my mind is always on whatever might help me feel better or at least distract me, like my bed. I daydream a lot when I'm sick. I always thought I was a daydreamer just because I'm an introspective person. Now I think daydreaming is my way of escaping from my body, immersing myself in another world.
This realization makes sense, based on the things I daydream about, like being rich, famous, popular and bragging about my imaginary career. In these are fantasies I am independent, strong and admired. I anticipate responses to this entry like, "But Ashley, you are strong!" Many people have told me that I'm the strongest person they know because I'm humble; I don't feel sorry for myself; I behave in ways many wouldn't dare and because I manage to smile and laugh more than most and make a life for myself despite my health problems.
Fair enough. I'm very honoured that people feel this way about me, but I seldom feel strong when I am sad.
I don't' seem to know how to be happy when I'm sick.
My body, perhaps coincidentally, has been treating me very well. It seems to have influenced my mind. I can think of nothing else that would account for this positive mood change. Nothing in my life is different. I just feel good, generally. I feel excited about the event my group is hosting, my Florence and the Machine concert and my trip to Hawaii next month. I knew these things would happen months ago, so why am I only just getting excited now? It's not like these things are happening next week. There's still a bunch of time left.
I'm thinking that maybe I'm excited because I'm able to imagine myself having the energy necessary to fully enjoy concerts, holidays and parties. I think socializing is an all-or-nothing thing for me. Either I'm completely present mentally (if I feel well physically) or I'm very distant. When I feel sick, my mind is always on whatever might help me feel better or at least distract me, like my bed. I daydream a lot when I'm sick. I always thought I was a daydreamer just because I'm an introspective person. Now I think daydreaming is my way of escaping from my body, immersing myself in another world.
This realization makes sense, based on the things I daydream about, like being rich, famous, popular and bragging about my imaginary career. In these are fantasies I am independent, strong and admired. I anticipate responses to this entry like, "But Ashley, you are strong!" Many people have told me that I'm the strongest person they know because I'm humble; I don't feel sorry for myself; I behave in ways many wouldn't dare and because I manage to smile and laugh more than most and make a life for myself despite my health problems.
Fair enough. I'm very honoured that people feel this way about me, but I seldom feel strong when I am sad.
I don't' seem to know how to be happy when I'm sick.
Sunday, March 14, 2010
Seriously
My appetite has nearly completely disappeared: gone the way of my ability to speak proper sentences and feel full-time happiness. Today all I had was an All Bran bar, some almonds and two glasses of milk. I didn't have a proper meal Friday either. I'm just waiting for my clothes to start falling off me. Good thing I haven't thrown away my size 0 pants.
Crazy Heart comes out to play sometimes when I eat, as do Nausea, abdominal pain and Sadness. I get confused sometimes when I try to understand to what people say to me or when I try to express myself. This is Auditory Processing Disorder joining the fun. It's really playing up these days. Wtf is wrong with me?
I can't blame everything on my illness. These symptoms result from pre-existing, likely permanent, conditions. The symptoms keep going on and I'm a fool to think they won't continue to. It just seems so pointless: taking heart medications, resting, staying off my feet, following psychologist advice to repeat things and have others repeat until I understand. The list goes on, but none of these things seem to help. And these symptoms, some for which no medical explanation or treatment have been found, are caused by unrelated conditions. Bad luck? Maybe.
I couldn't even fully enjoy my 9-month delayed birthday lunch on Friday because food made me feel sick and I was having trouble understanding what my friends were saying -- trouble understanding what I was saying! Then my legs got all weak and achey after I dared to walk for a while.
Sometimes I think Screw this. Screw trying. Nothing helps. I don't know what to do with myself. It's becoming very difficult to bear, especially with the promise that most of this will last for the rest of my life. A daunting sentence. How could I have possibly avoided becoming jaded? My body and mind punish me for going out and living my life. Taking time off to rest didn't make me happy; school hasn't made me happy. What will? I don't know what to do. There's no distraction.
I write little funny posts in here, perhaps creating the illusion that I'm happy or at least dealing with everything okay. Really, I cry at least twice at week. This is so hard.
Crazy Heart comes out to play sometimes when I eat, as do Nausea, abdominal pain and Sadness. I get confused sometimes when I try to understand to what people say to me or when I try to express myself. This is Auditory Processing Disorder joining the fun. It's really playing up these days. Wtf is wrong with me?
I can't blame everything on my illness. These symptoms result from pre-existing, likely permanent, conditions. The symptoms keep going on and I'm a fool to think they won't continue to. It just seems so pointless: taking heart medications, resting, staying off my feet, following psychologist advice to repeat things and have others repeat until I understand. The list goes on, but none of these things seem to help. And these symptoms, some for which no medical explanation or treatment have been found, are caused by unrelated conditions. Bad luck? Maybe.
I couldn't even fully enjoy my 9-month delayed birthday lunch on Friday because food made me feel sick and I was having trouble understanding what my friends were saying -- trouble understanding what I was saying! Then my legs got all weak and achey after I dared to walk for a while.
Sometimes I think Screw this. Screw trying. Nothing helps. I don't know what to do with myself. It's becoming very difficult to bear, especially with the promise that most of this will last for the rest of my life. A daunting sentence. How could I have possibly avoided becoming jaded? My body and mind punish me for going out and living my life. Taking time off to rest didn't make me happy; school hasn't made me happy. What will? I don't know what to do. There's no distraction.
I write little funny posts in here, perhaps creating the illusion that I'm happy or at least dealing with everything okay. Really, I cry at least twice at week. This is so hard.
Saturday, March 13, 2010
Dangerous Rain/Lucky Left Hand
Today I took my piece of !#&@ Dollar Store umbrella for a walk as it tried to pull me into the sky like Mary Poppins. The wind kept blowing the spokes outward, creating a force that pulled me upward when I tried to walk with the umbrella broken and outward when I put the umbrella in front of me to try to fix the spokes. Sometimes I shook the umbrella widely; other times I just held it in front of me and let it pull me down the street; other times I collapsed the umbrella and whispered swear words, refusing to put it back up until the rain got heavy.
It must have been quite a sight: me wearing my yellow trench coat shaking a broken purple umbrella. Its spokes were naked and the tips of them were threatening to poke my eyes out. A freak accident seemed likely since the small handle and my weak hand and arm gave me little control over the violently waving purple monster. I decided to take the risk rather than hold the umbrella with both hands. I thought if anything good came from the walk, it would be that my left hand I had in the pocket of my coat was warm. How I envy you, Left Hand. You never have to write anything or be exposed to the cold.
You may be wondering why I chose to subject myself to the dangers of a rebellious umbrella on a Saturday afternoon. Well, I had a cat to feed. What I won't do for animals and money. We all know I need both right now.
Maybe I'll use some of my cat-sitting money to buy a new umbrella.
It must have been quite a sight: me wearing my yellow trench coat shaking a broken purple umbrella. Its spokes were naked and the tips of them were threatening to poke my eyes out. A freak accident seemed likely since the small handle and my weak hand and arm gave me little control over the violently waving purple monster. I decided to take the risk rather than hold the umbrella with both hands. I thought if anything good came from the walk, it would be that my left hand I had in the pocket of my coat was warm. How I envy you, Left Hand. You never have to write anything or be exposed to the cold.
You may be wondering why I chose to subject myself to the dangers of a rebellious umbrella on a Saturday afternoon. Well, I had a cat to feed. What I won't do for animals and money. We all know I need both right now.
Maybe I'll use some of my cat-sitting money to buy a new umbrella.
Monday, March 8, 2010
Someone Dissect My Subconscious
A few years ago, for my first assignment in my Literary Non-Fiction class, I wrote a description of a woman I saw at a bar -- or I might have made this image up. She was very tense. Her thighs appeared to be clenched together very tightly like she was trying to squeeze an imaginary lemon between them. My instructor wrote on the description that this image was a bit rude. I read it again and discovered the sexual connotation.
Some weeks ago I thought up a piece in my head about a musician working hard to blow into her trombone between half-closed lips while pumping the slide. She stops the music so she can open the spit valve. She enjoys seeing her saliva pool into the carpet knowing that it represents her hard work to create music. I didn't realize the phallic connotation until recently.
It seems I'm an ignorant virgin accidentally preparing for a career writing hardcore romance novels.
Some weeks ago I thought up a piece in my head about a musician working hard to blow into her trombone between half-closed lips while pumping the slide. She stops the music so she can open the spit valve. She enjoys seeing her saliva pool into the carpet knowing that it represents her hard work to create music. I didn't realize the phallic connotation until recently.
It seems I'm an ignorant virgin accidentally preparing for a career writing hardcore romance novels.
Sunday, March 7, 2010
Friends, Acquaintances and Others
I just created a Facebook event and invited a bunch of friends I really want to see. I predict that I will feel great this week because I have the whole time to rest, so I know I will want to celebrate. I hope the event will cure my loneliness.
I have this irrational fear that no one will want to come! I know it's ridiculous because I have so many people who love me and if anyone can't come, it will be because they're busy. Still, I'm self conscious of my social skills. I always have been, but it feels worse now. I'm out of partying practice because I have so seldom gone out since I got sick. In big groups of people, even those I know well, I don't really know what to do with myself.
A week ago, one of my instructors told the class to get into groups for an in-class assignment and then another set of groups for a presentation due the week after the break. I couldn't find group members for either of them! I was so embarrassed to walk around the classroom, asking classmates if they needed someone for their group. I imagined I looked like a lost puppy dog. I talk to my classmates all of the time and I'm sure most of them like me, so I figured I had a hard time because I had been sitting on my own that day. Still, it hurt and I couldn't help but take it personally.
I feel awkward a lot of the time. Sometimes some of my friends make fun of my quirks: that I still wear undershirts, that I'm a really slow eater and do other abnormal things. I feel singled out and its not cool! I don't know what I have to do to stop taking things so personally, feel more comfortable and less self conscious. I've always envied my sister who is super cool and seems to make friends wherever she goes. I don't connect with people nearly that easily and this makes me impatient!
I have this irrational fear that no one will want to come! I know it's ridiculous because I have so many people who love me and if anyone can't come, it will be because they're busy. Still, I'm self conscious of my social skills. I always have been, but it feels worse now. I'm out of partying practice because I have so seldom gone out since I got sick. In big groups of people, even those I know well, I don't really know what to do with myself.
A week ago, one of my instructors told the class to get into groups for an in-class assignment and then another set of groups for a presentation due the week after the break. I couldn't find group members for either of them! I was so embarrassed to walk around the classroom, asking classmates if they needed someone for their group. I imagined I looked like a lost puppy dog. I talk to my classmates all of the time and I'm sure most of them like me, so I figured I had a hard time because I had been sitting on my own that day. Still, it hurt and I couldn't help but take it personally.
I feel awkward a lot of the time. Sometimes some of my friends make fun of my quirks: that I still wear undershirts, that I'm a really slow eater and do other abnormal things. I feel singled out and its not cool! I don't know what I have to do to stop taking things so personally, feel more comfortable and less self conscious. I've always envied my sister who is super cool and seems to make friends wherever she goes. I don't connect with people nearly that easily and this makes me impatient!
Saturday, March 6, 2010
My Chaotic, but Guilt-Free Rest Week
I have the puppy in my lap. He has his paws on the keyboard table and he's looking at the screen. He just lied down. Aw. He's so tired after his busy morning playing. I'm tired too. I had a rough symptom week. I wish I could have guilt-free time to rest like he does. No, I wish I didn't need to rest. I hate that I'm still so tired after taking Wednesday and Thursday off school.
For about three days, I had serious leg pain and fatigue. On Tuesday after I interviewed someone for a school project, I dared to go for a walk. Half an hour into it, it was too hard to lift my feet up properly, so I shuffle-dragged myself to the nearby subway station. I felt so defeated. I thought that was a randomly bad symptom time, but I ended up feeling horrible for the next couple of days. One night I couldn't even sleep because of the pain. Yesterday I was much more energetic, but by night I was having to catch myself a lot. I nearly fell twice.
I'm pretty sure the pain and fatigue mostly result from the Post-Viral syndrome, which would explain why my symptoms are intermittent and worsen with activity. My neurologist told me he has seen many patients like me who have non-specific symptoms that go for months and months after a virus. This virus was severe enough to injure my liver, (which healed after a week after my doctor discovered the injury) so it makes sense that I still haven't recovered, especially considering my pre-existing health problems. I'm not the most robust person in the world.
I think a big part of me is usually more drawn to Dandy Walker and my other conditions as a cause for this illness because I've always had these symptoms: they're just more pronounced. Also, I feel like Dandy Walker Syndrome as a cause of this seems to validate my situation more. Post-Viral syndrome, from what doctors have told me, is harmless and requires no treatment. How can such severe symptoms be "harmless"? Post-Viral Syndrome will go away on its own, so I hope when it does, my symptoms will improve. I'm not very optimistic, though. Like I said, I had the symptoms, just less severely, before the Post-Viral Syndrome. Months ago, I imagined that when the Post-Viral Syndrome ended, I would feel amazing and be very strong. This was clearly a delusion because I wasn't in amazing health before I got the post-viral. Why would I be in amazing health when it ends?
I hope the time away from school and people during my Reading Week, which has just started, won't make me too reflective. I'm sure I will be distracted by the great level of school work I have to do! I don't really know much of a break it will be. This week I have to write a company analysis, do a copy editing assignment, find an interview for a writing assignment, prepare two group presentations and seek sponsorships for my event.
Most of my classmates seem to feel really stressed about everything we have to do, but I'm not stressed at all. Most of my assignments are easy and don't take much time to do. I can handle the workload; it's just physical activity that worsens my symptoms. I will get plenty of rest. I don't have to go out much, so I should feel decent this week. I can rest when I want without feeling guilty about it or having to deal with people who don't understand what I'm going through. These assignments feel so insignificant compared to my health problems. I have perspective. I'm very grateful that I don't have a job or need a job.
I'm going to try not to be too anti-social, though. My friends are so supportive and it's so therapeutic to laugh with them and forget about school and my health. I want to see if any of them want to come to my house for tea. I live at home, so I'll have to ask for Mommy and Daddy's permission first! Ha.
For about three days, I had serious leg pain and fatigue. On Tuesday after I interviewed someone for a school project, I dared to go for a walk. Half an hour into it, it was too hard to lift my feet up properly, so I shuffle-dragged myself to the nearby subway station. I felt so defeated. I thought that was a randomly bad symptom time, but I ended up feeling horrible for the next couple of days. One night I couldn't even sleep because of the pain. Yesterday I was much more energetic, but by night I was having to catch myself a lot. I nearly fell twice.
I'm pretty sure the pain and fatigue mostly result from the Post-Viral syndrome, which would explain why my symptoms are intermittent and worsen with activity. My neurologist told me he has seen many patients like me who have non-specific symptoms that go for months and months after a virus. This virus was severe enough to injure my liver, (which healed after a week after my doctor discovered the injury) so it makes sense that I still haven't recovered, especially considering my pre-existing health problems. I'm not the most robust person in the world.
I think a big part of me is usually more drawn to Dandy Walker and my other conditions as a cause for this illness because I've always had these symptoms: they're just more pronounced. Also, I feel like Dandy Walker Syndrome as a cause of this seems to validate my situation more. Post-Viral syndrome, from what doctors have told me, is harmless and requires no treatment. How can such severe symptoms be "harmless"? Post-Viral Syndrome will go away on its own, so I hope when it does, my symptoms will improve. I'm not very optimistic, though. Like I said, I had the symptoms, just less severely, before the Post-Viral Syndrome. Months ago, I imagined that when the Post-Viral Syndrome ended, I would feel amazing and be very strong. This was clearly a delusion because I wasn't in amazing health before I got the post-viral. Why would I be in amazing health when it ends?
I hope the time away from school and people during my Reading Week, which has just started, won't make me too reflective. I'm sure I will be distracted by the great level of school work I have to do! I don't really know much of a break it will be. This week I have to write a company analysis, do a copy editing assignment, find an interview for a writing assignment, prepare two group presentations and seek sponsorships for my event.
Most of my classmates seem to feel really stressed about everything we have to do, but I'm not stressed at all. Most of my assignments are easy and don't take much time to do. I can handle the workload; it's just physical activity that worsens my symptoms. I will get plenty of rest. I don't have to go out much, so I should feel decent this week. I can rest when I want without feeling guilty about it or having to deal with people who don't understand what I'm going through. These assignments feel so insignificant compared to my health problems. I have perspective. I'm very grateful that I don't have a job or need a job.
I'm going to try not to be too anti-social, though. My friends are so supportive and it's so therapeutic to laugh with them and forget about school and my health. I want to see if any of them want to come to my house for tea. I live at home, so I'll have to ask for Mommy and Daddy's permission first! Ha.
Tuesday, March 2, 2010
My Conversation with Writer, Professor and my Friend, Kate Schapira: Part 2
A.A.: How has writing emotionally affected you, both personally and professionally?
K.S.: Personally, writing does for me what I hope it will do for my students as well—all the things I said up there (different ones at different times). Right now one of the things I’m using writing for is to explore some ideas and approaches that kind of repel me but also fascinate me—so what’s that about? I think writing is one of the endeavors where I am least afraid.
Professionally is where some of the fear does come in—showing work to people, caring what they think of it, hating it and them and myself (just for a second) when they reject it, fearing that they’ll drive a stake through my ankles and leave me behind the Mobil station (I didn’t originate that, but don’t remember where it comes from—if anyone reads this and it’s your image, speak up!). But I also would like to believe that the investigations I engage in might be intriguing, thrilling or illuminating for other people to see (and I do like seeing other people’s), so I put them out there, in case. I almost never feel like throwing up anymore when this happens. I got a rejection letter just today, as a matter of fact, and it felt pretty bad. But when it’s an acceptance letter, it feels pretty good. (It would also be awesome if how I felt about myself wasn’t quite so vulnerable to how other people felt about my WORK, not even me per se, but that’s more of a long-term goal.)
The other thing is that writing and teaching writing are, at the moment, really the only things that I like doing AND do well enough to get recognized for and/or paid for. (At the moment, as far as writing itself is concerned, it’s “recognized for”; I haven’t been trying to make my living as a writer). Without them, I wouldn’t have a professional life! With them, I get to (for example) visit the class of high school seniors whose teacher is a friend of mine and talk with them about their poetry—and also about going to college. I get to read my work in front of people and watch them respond to it. I get to sit with a student and talk with her about how her work is changing and improving, and what she’s still struggling with, and what she wants to do next. Last year, I got to hear four classes of about 20 6-year-olds each talk about Lisa Jarnot’s “Cave Poem” and help them write about where they hide, why they hide, and how they feel when they hide. And I get to eat food, wear clothes, live in an apartment, and occasionally go to the movies or something.
A.A.: I read on the internet that you like to make chap books and leave them for people to find. Why is that?
K.S.: Wouldn’t you be happy, or at least tickled, if tucked into your library book you found a well-made, cool-looking little chapbook—even if you didn’t like poetry? That’s one reason. Another is that it increases the chance of the poems being seen by people who might not otherwise encounter them. If they don’t like them, no big deal—I’ll probably never know. The third reason is that if I make the book myself, I can make an end run, so to speak, around the acceptance/rejection setup (although I do participate in that as well, partly because the acceptance feels so good). And the fourth reason has do to with how good it feels, at least for me, to make things. I love making things—books especially—and then looking at, and sharing, the things I’ve made.
You asked me above how writing has emotionally affected me; back at ya. Since you blog, I’m also really interested in how writing regularly and telling your story on the internet feels to you; What do you value about it, particularly about its public aspect? What, if anything, frustrates you about it? What part do your online acquaintances with other people, including writers, play in the enjoyment and (if any) the frustration?
A.A.: I opened a Blogger account about two years ago and never really had anything I wanted to write. Then in November 2009, after several months of being sick, I became really overwhelmed. I was (and still am) experiencing Post-Viral Syndrome, which was complicated by pre-existing issues like my Dandy Walker Syndrome. I wasn’t working or in school, so I had a lot of time to think. I thought a lot about my life and all of the times I’d been sick or at least felt awful or had disability related difficulties. Having always found catharsis in writing, I knew that I had to get more of my feelings down. My private diary wasn’t enough. I wanted to become part of a community of other people who’ve dealt with a life of illness. I wanted my writing to be available to them. I also find I’m better able to explain my complex thoughts through writing, than through speaking – perhaps a product of my Auditory Processing Disorder, I don’t know. Anyway, like you do, I wrote to think. I wanted to figure out why I was so convinced I was imagining my experiences or at least exaggerating them.
I get frustrated with bloggers who have a pity-party every entry, who seem to be just trying to recruit sympathizers. I especially get angry with mothers of children who have illnesses or disability and release the identity of their children, post pictures of them after surgery and other things like that. As if the child has no right to privacy at all.
I don’t think I get frustrated with any of my blogger acquaintances because they work hard to see what I’m going through. Sometimes when they recommend actions I should take to feel better, I sense they don’t understand how difficult it is for me to ask for help, to deal with intimidating doctors. They do make it seem to think it’s all easier than it really is, but I know they’re only trying to help. I don’t resent them for it. Sometimes, not just in my blog, I’ll get comments about my heart like, “You should try meditation,” implying that to lower my heart rate, all I have to do is relax. In other words: I’m stressed. Assumptions like that really irritate me.
K.S.: What are some of the things that satisfy you in what you read—things you love to see? What are some things you would really love to write about, but haven’t yet?
A.A.: I adore memoirs, fictions, ah, I love to read lots of things, mainly those that are written in the first person. I love the idea of seeing the story through one character’s eyes and experiencing everything for the first time with that character. I love to read about the character’s insecurities and observations and see how the character grows throughout the book. I think you can only really get to know a character this well in a long book. I want to write a novel someday. I think creating a character, figuring out what makes that character tick, is like acting, something I used to really enjoy in high school.
K.S.: One of the blog entries you pointed me towards (“Lucky” on 11/14/09) feels very like a line in the sand in terms of thinking about your body and speaking publicly about it, and a lot of your blog entries focus on explaining your body to (often able-bodied) people. How has the way you talk and write about your body changed over the years? Was there a point when you feel you started to invent or adapt your own way of talking/writing about it, rather than accept (or in addition to accepting) others’ ways?
A.A.: Until about high school or university, I didn’t know I had Dandy Walker Syndrome. I had just assumed that my balance, co-ordination and fatigue issues were related to my shunt. Why would I think any differently? No one ever told me. I resent my mom, doctors, teachers and physical and occupational therapists for not making sure I knew why I was the way I was or why I was exempt from certain activities like walks to the local stadium, which were deemed too difficult or even dangerous for me. I don’t recall having much say about what I thought I could do or what I wanted to do. I feel like a lot of that was decided for me, based on medical evidence and testing that indicated I would likely have problems. A lot of it, of course, was based on my difficulties other people observed. I used to just tell people “I’m not supposed to do this,” but now I say, “I have a neurological condition that makes ____ difficult.” So I’ve become more comfortable admitting I have challenges or that I need help. I think this comfort stems from being educated about myself.
When I learned more about my issues and became comfortable talking about them in university, I started writing many of my assignments in my Health and Society and Professional Writing classes about my life and my thoughts about how sick people are treated and who gets to define "sick." I also started talking to friends, teachers and lots of other people about my health. It was a burst of freedom after hiding my feelings and thoughts for so many years. I admit that in university I started to feel sorry for myself. I craved sympathy.
K.S.: In my question about (not) being believed, I said “we” meaning “we humans,” but I think that’s a situation that often confronts women in particular (and perhaps even more particularly women of color and women living with disabilities). We’ve talked a bit about saying “we” (specifically in the context of “we women” and “we want”) and one of the things that you said that stood out for me had to do with unity—acknowledging shared experience and acting based on that experience. I’d like to hear some more of your thoughts on that—what do “we” need to know about each other before “we” can act? What happens when part of the “we” thinks one action is the best choice, and another wants to put something else first? (This is way, way generalized and if you need me to come up with an example I can; it also intersects with some thoughts about community that I may bring up later to ask for your thoughts.)
A.A.: Ah, “we” is something I have trouble with. I know I have become offended after other people with health issues I know on the internet have said things to me like, “People don’t know what we go through.” The trouble with “we” is that it assumes that you KNOW you have experienced something someone else has. And how DO you know this? There’s this sense that if people have the same symptoms as others, they know what those people are going through. I don’t think that’s fair because there are so many other factors besides illness. It’s wrong to compare one person’s suffering to another and I think that can happen with the use of “we.”
I have only used “we” when I’ve compared my experiences with doctors or other people to the experiences of others who’ve also endured such things. I think many doctors lack compassion and seem to be focused more on treating and curing then on caring. I know many people out there can relate to this. Sometimes other women in my perceived “we” seem to hate doctors who tend to assume they have anxiety. In this instance, I don’t want to be a part of that “we” because I understand that doctors probably DO see a lot of neurotic people, so it can be hard to differentiated between the neurotic and those who are really going through something. I HAVE had positive experiences with the medical field, I HAVE had diagnoses, so I don’t feel comfortable being lumped in with people who haven’t and resent doctors for not taking them seriously.
K.S.: One thing that shows up in “Case Fbdy.” is the cultural notion that women’s bodies are public property—that everyone (men, other women, women’s children, other children, even machines and inanimate objects) has the right to comment on them, touch them, condemn them, judge them, use them, examine them (according to their inclinations). I’ve heard stories from disabled people that suggest able-bodied people have similar attitudes toward disabled and/or differently abled bodies. As a woman living with some disabilities, have people approached you with this attitude, and what has your response been? Is that different from what you’d LIKE to say/do? (I notice that thus far you have been very polite to commenters on your blog who seem to think they know your business better than you do.)
A.A.: I don’t really feel this notion applies to me, perhaps because my issues are invisible. People have always seemed hesitant to ask me questions about my health or disability – almost nervously tip-toeing. This may be because I typically evade the topic and don’t often bring it up in conversation with my friends or whomever. I don’t make it easy for people to talk about it. Some people are actually afraid to touch my shunt, so I don’t invite people to touch it anymore. It grosses some people out – even my mother and sister who cringe when I rub my shunt if it feels irritated.
I have heard of this “right to comment, etc.” before, though. I’ve heard of adults who have dwarfism being pet like dogs or cuddled like babies. I’ve also heard of people talking ABOUT the person with the disability, to his parent or whatever, in front of the person with the disability. But no, I’ve never experienced anything like this I don’t think.
I’m trying to figure out what your comment “knowing your business better than you do” refers to.
K.S.: Personally, writing does for me what I hope it will do for my students as well—all the things I said up there (different ones at different times). Right now one of the things I’m using writing for is to explore some ideas and approaches that kind of repel me but also fascinate me—so what’s that about? I think writing is one of the endeavors where I am least afraid.
Professionally is where some of the fear does come in—showing work to people, caring what they think of it, hating it and them and myself (just for a second) when they reject it, fearing that they’ll drive a stake through my ankles and leave me behind the Mobil station (I didn’t originate that, but don’t remember where it comes from—if anyone reads this and it’s your image, speak up!). But I also would like to believe that the investigations I engage in might be intriguing, thrilling or illuminating for other people to see (and I do like seeing other people’s), so I put them out there, in case. I almost never feel like throwing up anymore when this happens. I got a rejection letter just today, as a matter of fact, and it felt pretty bad. But when it’s an acceptance letter, it feels pretty good. (It would also be awesome if how I felt about myself wasn’t quite so vulnerable to how other people felt about my WORK, not even me per se, but that’s more of a long-term goal.)
The other thing is that writing and teaching writing are, at the moment, really the only things that I like doing AND do well enough to get recognized for and/or paid for. (At the moment, as far as writing itself is concerned, it’s “recognized for”; I haven’t been trying to make my living as a writer). Without them, I wouldn’t have a professional life! With them, I get to (for example) visit the class of high school seniors whose teacher is a friend of mine and talk with them about their poetry—and also about going to college. I get to read my work in front of people and watch them respond to it. I get to sit with a student and talk with her about how her work is changing and improving, and what she’s still struggling with, and what she wants to do next. Last year, I got to hear four classes of about 20 6-year-olds each talk about Lisa Jarnot’s “Cave Poem” and help them write about where they hide, why they hide, and how they feel when they hide. And I get to eat food, wear clothes, live in an apartment, and occasionally go to the movies or something.
A.A.: I read on the internet that you like to make chap books and leave them for people to find. Why is that?
K.S.: Wouldn’t you be happy, or at least tickled, if tucked into your library book you found a well-made, cool-looking little chapbook—even if you didn’t like poetry? That’s one reason. Another is that it increases the chance of the poems being seen by people who might not otherwise encounter them. If they don’t like them, no big deal—I’ll probably never know. The third reason is that if I make the book myself, I can make an end run, so to speak, around the acceptance/rejection setup (although I do participate in that as well, partly because the acceptance feels so good). And the fourth reason has do to with how good it feels, at least for me, to make things. I love making things—books especially—and then looking at, and sharing, the things I’ve made.
You asked me above how writing has emotionally affected me; back at ya. Since you blog, I’m also really interested in how writing regularly and telling your story on the internet feels to you; What do you value about it, particularly about its public aspect? What, if anything, frustrates you about it? What part do your online acquaintances with other people, including writers, play in the enjoyment and (if any) the frustration?
A.A.: I opened a Blogger account about two years ago and never really had anything I wanted to write. Then in November 2009, after several months of being sick, I became really overwhelmed. I was (and still am) experiencing Post-Viral Syndrome, which was complicated by pre-existing issues like my Dandy Walker Syndrome. I wasn’t working or in school, so I had a lot of time to think. I thought a lot about my life and all of the times I’d been sick or at least felt awful or had disability related difficulties. Having always found catharsis in writing, I knew that I had to get more of my feelings down. My private diary wasn’t enough. I wanted to become part of a community of other people who’ve dealt with a life of illness. I wanted my writing to be available to them. I also find I’m better able to explain my complex thoughts through writing, than through speaking – perhaps a product of my Auditory Processing Disorder, I don’t know. Anyway, like you do, I wrote to think. I wanted to figure out why I was so convinced I was imagining my experiences or at least exaggerating them.
I get frustrated with bloggers who have a pity-party every entry, who seem to be just trying to recruit sympathizers. I especially get angry with mothers of children who have illnesses or disability and release the identity of their children, post pictures of them after surgery and other things like that. As if the child has no right to privacy at all.
I don’t think I get frustrated with any of my blogger acquaintances because they work hard to see what I’m going through. Sometimes when they recommend actions I should take to feel better, I sense they don’t understand how difficult it is for me to ask for help, to deal with intimidating doctors. They do make it seem to think it’s all easier than it really is, but I know they’re only trying to help. I don’t resent them for it. Sometimes, not just in my blog, I’ll get comments about my heart like, “You should try meditation,” implying that to lower my heart rate, all I have to do is relax. In other words: I’m stressed. Assumptions like that really irritate me.
K.S.: What are some of the things that satisfy you in what you read—things you love to see? What are some things you would really love to write about, but haven’t yet?
A.A.: I adore memoirs, fictions, ah, I love to read lots of things, mainly those that are written in the first person. I love the idea of seeing the story through one character’s eyes and experiencing everything for the first time with that character. I love to read about the character’s insecurities and observations and see how the character grows throughout the book. I think you can only really get to know a character this well in a long book. I want to write a novel someday. I think creating a character, figuring out what makes that character tick, is like acting, something I used to really enjoy in high school.
K.S.: One of the blog entries you pointed me towards (“Lucky” on 11/14/09) feels very like a line in the sand in terms of thinking about your body and speaking publicly about it, and a lot of your blog entries focus on explaining your body to (often able-bodied) people. How has the way you talk and write about your body changed over the years? Was there a point when you feel you started to invent or adapt your own way of talking/writing about it, rather than accept (or in addition to accepting) others’ ways?
A.A.: Until about high school or university, I didn’t know I had Dandy Walker Syndrome. I had just assumed that my balance, co-ordination and fatigue issues were related to my shunt. Why would I think any differently? No one ever told me. I resent my mom, doctors, teachers and physical and occupational therapists for not making sure I knew why I was the way I was or why I was exempt from certain activities like walks to the local stadium, which were deemed too difficult or even dangerous for me. I don’t recall having much say about what I thought I could do or what I wanted to do. I feel like a lot of that was decided for me, based on medical evidence and testing that indicated I would likely have problems. A lot of it, of course, was based on my difficulties other people observed. I used to just tell people “I’m not supposed to do this,” but now I say, “I have a neurological condition that makes ____ difficult.” So I’ve become more comfortable admitting I have challenges or that I need help. I think this comfort stems from being educated about myself.
When I learned more about my issues and became comfortable talking about them in university, I started writing many of my assignments in my Health and Society and Professional Writing classes about my life and my thoughts about how sick people are treated and who gets to define "sick." I also started talking to friends, teachers and lots of other people about my health. It was a burst of freedom after hiding my feelings and thoughts for so many years. I admit that in university I started to feel sorry for myself. I craved sympathy.
K.S.: In my question about (not) being believed, I said “we” meaning “we humans,” but I think that’s a situation that often confronts women in particular (and perhaps even more particularly women of color and women living with disabilities). We’ve talked a bit about saying “we” (specifically in the context of “we women” and “we want”) and one of the things that you said that stood out for me had to do with unity—acknowledging shared experience and acting based on that experience. I’d like to hear some more of your thoughts on that—what do “we” need to know about each other before “we” can act? What happens when part of the “we” thinks one action is the best choice, and another wants to put something else first? (This is way, way generalized and if you need me to come up with an example I can; it also intersects with some thoughts about community that I may bring up later to ask for your thoughts.)
A.A.: Ah, “we” is something I have trouble with. I know I have become offended after other people with health issues I know on the internet have said things to me like, “People don’t know what we go through.” The trouble with “we” is that it assumes that you KNOW you have experienced something someone else has. And how DO you know this? There’s this sense that if people have the same symptoms as others, they know what those people are going through. I don’t think that’s fair because there are so many other factors besides illness. It’s wrong to compare one person’s suffering to another and I think that can happen with the use of “we.”
I have only used “we” when I’ve compared my experiences with doctors or other people to the experiences of others who’ve also endured such things. I think many doctors lack compassion and seem to be focused more on treating and curing then on caring. I know many people out there can relate to this. Sometimes other women in my perceived “we” seem to hate doctors who tend to assume they have anxiety. In this instance, I don’t want to be a part of that “we” because I understand that doctors probably DO see a lot of neurotic people, so it can be hard to differentiated between the neurotic and those who are really going through something. I HAVE had positive experiences with the medical field, I HAVE had diagnoses, so I don’t feel comfortable being lumped in with people who haven’t and resent doctors for not taking them seriously.
K.S.: One thing that shows up in “Case Fbdy.” is the cultural notion that women’s bodies are public property—that everyone (men, other women, women’s children, other children, even machines and inanimate objects) has the right to comment on them, touch them, condemn them, judge them, use them, examine them (according to their inclinations). I’ve heard stories from disabled people that suggest able-bodied people have similar attitudes toward disabled and/or differently abled bodies. As a woman living with some disabilities, have people approached you with this attitude, and what has your response been? Is that different from what you’d LIKE to say/do? (I notice that thus far you have been very polite to commenters on your blog who seem to think they know your business better than you do.)
A.A.: I don’t really feel this notion applies to me, perhaps because my issues are invisible. People have always seemed hesitant to ask me questions about my health or disability – almost nervously tip-toeing. This may be because I typically evade the topic and don’t often bring it up in conversation with my friends or whomever. I don’t make it easy for people to talk about it. Some people are actually afraid to touch my shunt, so I don’t invite people to touch it anymore. It grosses some people out – even my mother and sister who cringe when I rub my shunt if it feels irritated.
I have heard of this “right to comment, etc.” before, though. I’ve heard of adults who have dwarfism being pet like dogs or cuddled like babies. I’ve also heard of people talking ABOUT the person with the disability, to his parent or whatever, in front of the person with the disability. But no, I’ve never experienced anything like this I don’t think.
I’m trying to figure out what your comment “knowing your business better than you do” refers to.
My Conversation with Writer, Professor and my Friend, Kate Schapira: Part 1
Kate Schapira is the author of TOWN
(Factory School, Heretical Texts, 2010) and several chapbooks with Flying Guillotine Press, Portable Press at Yo-Yo Labs, Cy Gist Press, Rope-A-Dope Press and horse less press, as well as her own kitchen-table imprint, In Hand Books. She runs the Publicly Complex reading series in Providence, RI. She has a B.A. from Bard College and an M.F.A. in poetry from Brown University
She works for Brown University and sometimes for the University of Rhode Island as an adjunct instructor. Kate has also taught and co-taught writing and art workshops in group homes for young kids and she has led writing workshops and a women's history class for incarcerated women (some in New York state, some in Rhode Island).
Kate is very kind, emotionally mature and curious about the experiences of illness and disability – characteristics I noticed very quickly through reading one of her chap books she sent me in the mail and also through her letters to me.
A.A.: I have your chap book about the experiences of illness and disability “Case Fbdy” in front of me. I remember you sent it to me after I commented on a post you wrote on Delirious Hem’s literature blog. What interests you about these experiences, which you told me you haven’t had yourself?
K.S.: Long answer alert! I’ll be honest and tell you that I had read and thought very little about disability as such when I wrote “Case Fbdy.” The found text was about aspirating or swallowing “foreign bodies”—especially straight pins used in sewing—and the main thing in my mind, I think, was that if you want someone to be oppressed, suppressed, weak or powerless, it’s a lot easier if you can get her to do it for you—to “swallow” it—and convince her that it’s natural to her, that it’s the best thing for her.
I write about things to figure out what I think about them and also to look for patterns and connections. I LOVE patterns and connections. Nothing thrills me more. I now realize that a lot of these ideas do intersect with disability and chronic illness and can see other themes that tie in with a lot of what I’ve read since about disability and its cultural presence—in particular, how sickness is often framed as disgusting to or difficult for the well person (doctor, husband, neighbor). I just don’t want to take credit for being more thoughtful than I was at the time.
Now that I have started thinking more about this and reading up (although I am still way back at the beginning), I think my interest in disability comes partly from the fact that as a currently able-bodied person, I don’t HAVE to think about it in terms of myself, and thus if I want things to be fairer for all humans (which I do) I have to take extra measures to think about it—my needs are NOT the only needs in the world. Also, of course, my able-bodied state (and privilege) may change at any second and will almost certainly change if I live to be old—the many people for whom “that time” is now deserve what all humans deserve (and only a few get). The idea of “deserving” is a separate and problematic one and I think I won’t get into it right now. Also, all humans get sick, all humans suffer, all humans die—but some humans like to behave as though this is not the case—and some humans are more penalized for it than others—and I want to acknowledge the presence of those forces in all of our lives, and also to deal with my own fears about them.
A.A.: One of my favourite passages in “Case Fbdy” is from “Two Days after Inspiration”:
She has to lie down, she’s a martyr
to headaches, she doesn’t thrive. Accident
makes bodies foreign. No year is given,
only duration, that is, external measure.
I identified with this completely. I think you really capture the sense of futility I feel knowing my disability/conditions are chronic and some permanent. My body does feel foreign. Mentally I feel young but physically I feel old. And the line on external measure... Wow! You hit it bang on. Doctors are the ones who decide how long you'll be sick or feel unwell, even though they don't know how you’re feeling. Oh, and "martyr" indeed. I refuse to give up and my body punishes me for trying. Symptoms get worse when I'm active, so try as I do, I can't seem to "thrive."
It’s like you’ve been sick all of your life. What inspired you to write this insightful piece? I definitely think patients – no, I don’t want to define people by their pathologies – I think people who deal with illness tend to resent their bodies and doctors, much in the same way you so creatively described. Under what circumstances do you think this resentment comes out?
K.S.: I was thinking about the way Western culture in particular pathologizes women’s bodies and regards them as “foreign” (for those of you watching at home, “Fbdy.” is apparently a short, medical-notational form of “foreign body”), strange, gross, sick and different, and how genuine sickness might arise from these attitudes and corresponding areas of ignorance. Because the piece of found text that inspired the project was from the 1800s, I was also thinking about things like swooning, the myth of the pioneer woman (infinitely tough yet infinitely nurturing, and always lauded in particular for her ability to endure pain), Little House on the Prairie, “hysteria”, the assumption that everyone else knows more than the speaker if the speaker is female, and the difficulty in being heard—those last two being things that, although not sick at the moment, I have undergone.
With regard to resentment, this actually intersects with one of my questions for you: One of the most horrifying things in the world is when we KNOW something is wrong—whether that thing is happening to us (from inside or outside our bodies) or to someone else—and people don’t believe us. You say in a blog entry (“Six Months” on 12/15/09) “…I want to feel and look really sick when I go into see him to open the gateway a little wider in case the bloodwork comes back normal. If the bloodwork comes back abnormal AND I feel and look sick, I won't feel guilty at all for complaining. I hate complaining when tests and examinations are normal because I feel like I look like a hypochondriac.” To me (listening from outside your experience) it sounds like your words (to doctors) don’t “count” (as proof), but your body does—they’ll believe that, they’ll trust that, it “counts”—they can “hear” your body better than your words, or at least you fear that that’s the case. Did I read that right, and if so, how does that connect with or affect the way you deal with doctors and the other people involved with your body and your health? How does that resentment come out for you?
A.A.: Yes, Kate. You heard that very right, but it doesn’t have much to do with my experiences with doctors which have been positive for the most part. And by “positive,” I mean that they have made diagnoses easily, without me having to fight for them or endure speeches that “It’s all in your head,” like so many patients, particularly those who’ve been healthy up until a point, have had to endure.
I tend to just imagine that I’ve been conditioned to feel symptoms that aren’t necessarily there, or conditioned myself to expect to feel ill or develop some new condition. I have no concept of what it is like to feel true health, a life devoid of difficulty or illness. It’s just something I’ve learned to expect.
Also, it feels SO surreal, knowing that I’ve had all of these problems in my life, most of which aren’t related to the others. It just seems like too great a coincidence. And I know that I only have mild versions of basically every condition I have, so I’m used to hearing from doctors, nurses and others that things could be a lot worse, that I’m “lucky.” So I’ve developed this “buck up/be grateful” mentality – like my health and disability issues aren’t worth my doctors’ time.
I feel even more obligated to “buck up/be grateful” when people note the invisibility of my issues. Just today, one of my classmates was asking me how I was doing and he said, “Well, you seem to be walking okay. You look good.” And it just makes me wonder how my suffering could possibly so invisible. Those comments also irritate me because I feel like others expect me to feel glad that at least I look good, or that others question the validity of my claims to illness and disability based on how I look and act. A few years ago, when I told a friend I had a learning disability, he said, “But you look smart.” There is this notion that suffering and difficulties are visible. There is also a notion that people with visible disabilities are suffering. I don’t think that’s fair either.
KS: In “Case Fbdy.” I think I was also imagining resentment and rage as itself a form of infection—pus, inflammation, fever are all signs that the body is fighting against something, right? So those things are uncomfortable and painful and can be gross, but they are also the body’s “speech,” its fury and anger. And of course sometimes what the body is fighting against is itself. I am uncertain about body-as-metaphor, illness-as-metaphor—is it appropriation? Is it creepy and/or unfair? What’s your take on that?
A.A: A: I actually didn’t find this metaphor in “Case Fbdy.” I think it’s an appropriate metaphor because it represents a basic perception of health: that illness, or at least symptoms, are a message from the body. It can be as simple as a pain in your hand you get when you touch a hot stove. Your body is telling you that’s dangerous. I think pus, inflammation, fever, etc. are obvious messages for you and your doctors to investigate. It’s like what I was saying before: these are visible, measurable experiences. Most importantly, for a patient, they aren’t subjective. So there is no room for a doctor to claim you’re fabricating illness, unless of course they suspect drugs or something else. Regardless, they know you require medical intervention. As a patient, this can be important, because it is proof of suffering. You conjured images of my mind of kids in the sandbox comparing their scabs. I remember a commercial that featured people comparing their scars from cancer surgeries. It can be liberating, to have proof of what you’ve endured, I think, to say “My scar is bigger than your scar.” Some may perceive their scars as war wounds. Well, now I’m getting into permanent evidence of illness, disability or suffering and that’s a whole other topic.
I think your metaphor can be dangerous, though, if it is turned into victimizing rhetoric: this person’s body is against her; she is helpless. Also, I’m sure it can be very traumatic to have visible, measurable symptoms because it provides people with opportunities to define people with disabilities by whatever makes their experience visible, such as: they are gross; they must be suffering; they must be weak. These, of course, can be unfair assumptions.
You’ve taught writing to kids in group homes and people who are incarcerated. What is it about writing that is so cathartic and educational?
K.S.: Probably each one of my students would give you a different answer! But I think that two of the things that writing can do are particularly applicable to distress and anger: the first is that it’s a way of getting what’s in HERE out THERE, from the head (or the gut, or wherever you may keep it) to the page, and once it’s there (even though it’s also still in your head) you can see it. It has a shape, and something that has shape can be shaped. You can shape it. If you’ve spent a lot of your life feeling or being more shaped than shaping, as it were, writing may not just feel good in itself, but also give you a taste of what it’s like to shape, to change, as well as to make something—to add something to the world that wasn’t there before. What you’ve written can also reveal to you what you don’t know, what you would like to know, what you can’t answer, what you want to think more about. In my own writing I like to go after those things rather than be like, “Okay, I’m done thinking about this now,” and I try to encourage students to do this as well, but if they feel they need the “done thinking about it” version, they usually go with that.
Writing’s second (and more obvious) power: you can show it/read it to other people, and they can see and hear what you think.
A.A.: What appeals to you about teaching writing?
K.S.: See above! I love helping people get to that point, where writing works for them—where they make it work for them, whatever it is that they need from it, whether that’s an investigation, a bridge, a septic tank, or something else that I haven’t even thought of. I love helping them figure out how to make their writing the most itself (whatever that is for them) but also showing them the range of what’s possible for them as writers. I know I’ve said this publicly before, but it’s such a great story that I’m about to tell it again: in my second year teaching college, a kid wrote in a response paper, “What’s great about poetry is that it doesn’t have to stop there.” He didn’t say where “there” was, and neither will I. I believe that it is really true, no matter where “there” is for each writer.
Teaching writing helps me figure out some of the things that I think about reading writing—both about individual projects and about words in general.
And also because of the enormous power that I believe words have, I like suggesting to students that they can and should use words with intention and care, because words affect how both the speaker and the listener think and feel.
(Factory School, Heretical Texts, 2010) and several chapbooks with Flying Guillotine Press, Portable Press at Yo-Yo Labs, Cy Gist Press, Rope-A-Dope Press and horse less press, as well as her own kitchen-table imprint, In Hand Books. She runs the Publicly Complex reading series in Providence, RI. She has a B.A. from Bard College and an M.F.A. in poetry from Brown UniversityShe works for Brown University and sometimes for the University of Rhode Island as an adjunct instructor. Kate has also taught and co-taught writing and art workshops in group homes for young kids and she has led writing workshops and a women's history class for incarcerated women (some in New York state, some in Rhode Island).
Kate is very kind, emotionally mature and curious about the experiences of illness and disability – characteristics I noticed very quickly through reading one of her chap books she sent me in the mail and also through her letters to me.
A.A.: I have your chap book about the experiences of illness and disability “Case Fbdy” in front of me. I remember you sent it to me after I commented on a post you wrote on Delirious Hem’s literature blog. What interests you about these experiences, which you told me you haven’t had yourself?
K.S.: Long answer alert! I’ll be honest and tell you that I had read and thought very little about disability as such when I wrote “Case Fbdy.” The found text was about aspirating or swallowing “foreign bodies”—especially straight pins used in sewing—and the main thing in my mind, I think, was that if you want someone to be oppressed, suppressed, weak or powerless, it’s a lot easier if you can get her to do it for you—to “swallow” it—and convince her that it’s natural to her, that it’s the best thing for her.
I write about things to figure out what I think about them and also to look for patterns and connections. I LOVE patterns and connections. Nothing thrills me more. I now realize that a lot of these ideas do intersect with disability and chronic illness and can see other themes that tie in with a lot of what I’ve read since about disability and its cultural presence—in particular, how sickness is often framed as disgusting to or difficult for the well person (doctor, husband, neighbor). I just don’t want to take credit for being more thoughtful than I was at the time.
Now that I have started thinking more about this and reading up (although I am still way back at the beginning), I think my interest in disability comes partly from the fact that as a currently able-bodied person, I don’t HAVE to think about it in terms of myself, and thus if I want things to be fairer for all humans (which I do) I have to take extra measures to think about it—my needs are NOT the only needs in the world. Also, of course, my able-bodied state (and privilege) may change at any second and will almost certainly change if I live to be old—the many people for whom “that time” is now deserve what all humans deserve (and only a few get). The idea of “deserving” is a separate and problematic one and I think I won’t get into it right now. Also, all humans get sick, all humans suffer, all humans die—but some humans like to behave as though this is not the case—and some humans are more penalized for it than others—and I want to acknowledge the presence of those forces in all of our lives, and also to deal with my own fears about them.
A.A.: One of my favourite passages in “Case Fbdy” is from “Two Days after Inspiration”:
She has to lie down, she’s a martyr
to headaches, she doesn’t thrive. Accident
makes bodies foreign. No year is given,
only duration, that is, external measure.
I identified with this completely. I think you really capture the sense of futility I feel knowing my disability/conditions are chronic and some permanent. My body does feel foreign. Mentally I feel young but physically I feel old. And the line on external measure... Wow! You hit it bang on. Doctors are the ones who decide how long you'll be sick or feel unwell, even though they don't know how you’re feeling. Oh, and "martyr" indeed. I refuse to give up and my body punishes me for trying. Symptoms get worse when I'm active, so try as I do, I can't seem to "thrive."
It’s like you’ve been sick all of your life. What inspired you to write this insightful piece? I definitely think patients – no, I don’t want to define people by their pathologies – I think people who deal with illness tend to resent their bodies and doctors, much in the same way you so creatively described. Under what circumstances do you think this resentment comes out?
K.S.: I was thinking about the way Western culture in particular pathologizes women’s bodies and regards them as “foreign” (for those of you watching at home, “Fbdy.” is apparently a short, medical-notational form of “foreign body”), strange, gross, sick and different, and how genuine sickness might arise from these attitudes and corresponding areas of ignorance. Because the piece of found text that inspired the project was from the 1800s, I was also thinking about things like swooning, the myth of the pioneer woman (infinitely tough yet infinitely nurturing, and always lauded in particular for her ability to endure pain), Little House on the Prairie, “hysteria”, the assumption that everyone else knows more than the speaker if the speaker is female, and the difficulty in being heard—those last two being things that, although not sick at the moment, I have undergone.
With regard to resentment, this actually intersects with one of my questions for you: One of the most horrifying things in the world is when we KNOW something is wrong—whether that thing is happening to us (from inside or outside our bodies) or to someone else—and people don’t believe us. You say in a blog entry (“Six Months” on 12/15/09) “…I want to feel and look really sick when I go into see him to open the gateway a little wider in case the bloodwork comes back normal. If the bloodwork comes back abnormal AND I feel and look sick, I won't feel guilty at all for complaining. I hate complaining when tests and examinations are normal because I feel like I look like a hypochondriac.” To me (listening from outside your experience) it sounds like your words (to doctors) don’t “count” (as proof), but your body does—they’ll believe that, they’ll trust that, it “counts”—they can “hear” your body better than your words, or at least you fear that that’s the case. Did I read that right, and if so, how does that connect with or affect the way you deal with doctors and the other people involved with your body and your health? How does that resentment come out for you?
A.A.: Yes, Kate. You heard that very right, but it doesn’t have much to do with my experiences with doctors which have been positive for the most part. And by “positive,” I mean that they have made diagnoses easily, without me having to fight for them or endure speeches that “It’s all in your head,” like so many patients, particularly those who’ve been healthy up until a point, have had to endure.
I tend to just imagine that I’ve been conditioned to feel symptoms that aren’t necessarily there, or conditioned myself to expect to feel ill or develop some new condition. I have no concept of what it is like to feel true health, a life devoid of difficulty or illness. It’s just something I’ve learned to expect.
Also, it feels SO surreal, knowing that I’ve had all of these problems in my life, most of which aren’t related to the others. It just seems like too great a coincidence. And I know that I only have mild versions of basically every condition I have, so I’m used to hearing from doctors, nurses and others that things could be a lot worse, that I’m “lucky.” So I’ve developed this “buck up/be grateful” mentality – like my health and disability issues aren’t worth my doctors’ time.
I feel even more obligated to “buck up/be grateful” when people note the invisibility of my issues. Just today, one of my classmates was asking me how I was doing and he said, “Well, you seem to be walking okay. You look good.” And it just makes me wonder how my suffering could possibly so invisible. Those comments also irritate me because I feel like others expect me to feel glad that at least I look good, or that others question the validity of my claims to illness and disability based on how I look and act. A few years ago, when I told a friend I had a learning disability, he said, “But you look smart.” There is this notion that suffering and difficulties are visible. There is also a notion that people with visible disabilities are suffering. I don’t think that’s fair either.
KS: In “Case Fbdy.” I think I was also imagining resentment and rage as itself a form of infection—pus, inflammation, fever are all signs that the body is fighting against something, right? So those things are uncomfortable and painful and can be gross, but they are also the body’s “speech,” its fury and anger. And of course sometimes what the body is fighting against is itself. I am uncertain about body-as-metaphor, illness-as-metaphor—is it appropriation? Is it creepy and/or unfair? What’s your take on that?
A.A: A: I actually didn’t find this metaphor in “Case Fbdy.” I think it’s an appropriate metaphor because it represents a basic perception of health: that illness, or at least symptoms, are a message from the body. It can be as simple as a pain in your hand you get when you touch a hot stove. Your body is telling you that’s dangerous. I think pus, inflammation, fever, etc. are obvious messages for you and your doctors to investigate. It’s like what I was saying before: these are visible, measurable experiences. Most importantly, for a patient, they aren’t subjective. So there is no room for a doctor to claim you’re fabricating illness, unless of course they suspect drugs or something else. Regardless, they know you require medical intervention. As a patient, this can be important, because it is proof of suffering. You conjured images of my mind of kids in the sandbox comparing their scabs. I remember a commercial that featured people comparing their scars from cancer surgeries. It can be liberating, to have proof of what you’ve endured, I think, to say “My scar is bigger than your scar.” Some may perceive their scars as war wounds. Well, now I’m getting into permanent evidence of illness, disability or suffering and that’s a whole other topic.
I think your metaphor can be dangerous, though, if it is turned into victimizing rhetoric: this person’s body is against her; she is helpless. Also, I’m sure it can be very traumatic to have visible, measurable symptoms because it provides people with opportunities to define people with disabilities by whatever makes their experience visible, such as: they are gross; they must be suffering; they must be weak. These, of course, can be unfair assumptions.
You’ve taught writing to kids in group homes and people who are incarcerated. What is it about writing that is so cathartic and educational?
K.S.: Probably each one of my students would give you a different answer! But I think that two of the things that writing can do are particularly applicable to distress and anger: the first is that it’s a way of getting what’s in HERE out THERE, from the head (or the gut, or wherever you may keep it) to the page, and once it’s there (even though it’s also still in your head) you can see it. It has a shape, and something that has shape can be shaped. You can shape it. If you’ve spent a lot of your life feeling or being more shaped than shaping, as it were, writing may not just feel good in itself, but also give you a taste of what it’s like to shape, to change, as well as to make something—to add something to the world that wasn’t there before. What you’ve written can also reveal to you what you don’t know, what you would like to know, what you can’t answer, what you want to think more about. In my own writing I like to go after those things rather than be like, “Okay, I’m done thinking about this now,” and I try to encourage students to do this as well, but if they feel they need the “done thinking about it” version, they usually go with that.
Writing’s second (and more obvious) power: you can show it/read it to other people, and they can see and hear what you think.
A.A.: What appeals to you about teaching writing?
K.S.: See above! I love helping people get to that point, where writing works for them—where they make it work for them, whatever it is that they need from it, whether that’s an investigation, a bridge, a septic tank, or something else that I haven’t even thought of. I love helping them figure out how to make their writing the most itself (whatever that is for them) but also showing them the range of what’s possible for them as writers. I know I’ve said this publicly before, but it’s such a great story that I’m about to tell it again: in my second year teaching college, a kid wrote in a response paper, “What’s great about poetry is that it doesn’t have to stop there.” He didn’t say where “there” was, and neither will I. I believe that it is really true, no matter where “there” is for each writer.
Teaching writing helps me figure out some of the things that I think about reading writing—both about individual projects and about words in general.
And also because of the enormous power that I believe words have, I like suggesting to students that they can and should use words with intention and care, because words affect how both the speaker and the listener think and feel.
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