Yesterday I had a conversation with my mother about blogs and privacy and all of that.
When I write about my life, there are other people in it. What right do I have to publicize their secrets and stories? But I do have some right to my own happiness, and writing is how I process. And not to sound pretentious/conceited, but "Art" has a stake in this equation as well. The written work created effects far more people than those mentioned in it, and that is every bit as important as the process of its creation, for what good is the unaffected life?
My parents pick pick pick and criticize my (and everyone else's) every action. My own doubts in my mind sound in their voices, echoing back and forth conversations real to imagined and imagined to real.
I tried to be clear and strong to my mother yesterday that she, as a therapist, needs to insulate her privacy to the degree she sees fit, and that's her prerogative. If she wants to write books (as she has) and be findable on Facebook (as she does and is), those are all her decisions and her issues. I am a writer and not a therapist. I write under a pseudonym now, but my business is under my real name, I'm on Facebook, I am me and I am not afraid to share with the anonymous world or with people who might know me very well. I get to choose what I cloak about myself. If she is the therapist and the person trying to maintain privacy, she needs to be the one to put up the blocks and the barriers. It is literally her job, not mine.
When it comes to writing about other people in a public forum, I wrestle with it all the time. My instinct is to share it all as openly and honestly as I can, real names attached because then you know what I'm talking about and it's true and pure; anything I change or fabricate on purpose will be somehow less beautiful than the genuine article.
But I behave myself. I'm not actually the narcissist I often think I am. Maybe that's why I'm so bothered by my mom calling back today with her ominous "We need to talk. About the blog thing," that I know is just her dissatisfaction with my trying to put the responsibility on her instead of taking the burden on myself.
I have to decide what path to take when I call her back, because if I just listen and respond the conversation will be her telling me why I'm hurting other people by doing the one thing that means the most to me in the world, and it's my responsibility to protect her and myself and everyone else from her crazy stalking client because she (my mother) didn't foresee the professional conflicts of Facebook.
I get frustrated because I feel like everything is all about my mother except for judgment and blame.
Wednesday, October 27, 2010
Wednesday, October 20, 2010
Dual Citizenship
September, my head was so good. I had days and days of zero headache. Zero. And almost every day the pain was at least tolerable enough to function.
At first, I freaked out. I was so desperate to cram in everything I don't get to do when I'm a blob. I worked my tail off and felt like it wasn't good enough, like I wasn't getting enough done, like there was so much more to do and any moment I wasn't doing something visibly productive was a waste of my precious healthy time.
Then there were my friends. When the migraines are bad, I have trouble maintaining friendships. I have to cancel plans all the time and then we stop making plans. I can do things spontaneously, but few other people are available at my healthy whims. Then when we do get together, what do I have to talk about? My life is fairly limited, and if you don't find my present occupation or the ethereal and observational shit I like to spew interesting, I will bore you. Illness is incredibly isolating, and with a healthy dose of narcissism (I'm a writer, for fuck's sake), the Bad Days go by as all about me. My pain. My struggle. Pain is loud and makes me strongly aware of myself, everything else just background and things that might add or detract from pain. I'm like an infant, entirely corporal and needy. I kick and scream at pain, hunger, loneliness, frustration, and when these base things are quieted I marvel at my own two feet and the way light and color exist in and out of my dreams.
When September was good, I barely started relearning how to go out and be outside of myself, try to rediscover those friendships I care about. I went out to dinner with Possible Girl. I went back to the bar. I went to a party. Just getting my feet wet.
My neurologist says that my brain thinks pain is very important. We find something new to confuse it for as along as possible but it's trying to get back to the pain. When it finds it again, we go to something new. I like him better than the migraine clinic. The clinic is more aggressive, which was great short-term, but now that they've kind of blown their wad, he still has lots of ideas and worries about things like my long-term health and if my medications are killing my kidneys. But the point is, we'll keep working on finding things to trick my brain and keep getting chunks of time without pain. And each chunk of time I'm not in pain, I'll keep learning how to live a double life. And maybe I can take some of my this-is-just-how-it-is migraine-life acceptance into the bright places, and maybe I can take some of my human contacts and friends with me back into the dark.
Because October, thus far, sucked. I've gotten some good days. But more than half the days have been bad with some really bad. Today was particularly rotten with light and sound kicking my ass and logic evading me at every corner. When I curl up into myself, I want it to be about someone else for a change. I've had enough of me. I'm reading, looking for contact on the internet, but obviously it's not the same. I may call a friend tonight and deal with the pain of mechanised cell phone sound. Tell me a story of you.
At first, I freaked out. I was so desperate to cram in everything I don't get to do when I'm a blob. I worked my tail off and felt like it wasn't good enough, like I wasn't getting enough done, like there was so much more to do and any moment I wasn't doing something visibly productive was a waste of my precious healthy time.
Then there were my friends. When the migraines are bad, I have trouble maintaining friendships. I have to cancel plans all the time and then we stop making plans. I can do things spontaneously, but few other people are available at my healthy whims. Then when we do get together, what do I have to talk about? My life is fairly limited, and if you don't find my present occupation or the ethereal and observational shit I like to spew interesting, I will bore you. Illness is incredibly isolating, and with a healthy dose of narcissism (I'm a writer, for fuck's sake), the Bad Days go by as all about me. My pain. My struggle. Pain is loud and makes me strongly aware of myself, everything else just background and things that might add or detract from pain. I'm like an infant, entirely corporal and needy. I kick and scream at pain, hunger, loneliness, frustration, and when these base things are quieted I marvel at my own two feet and the way light and color exist in and out of my dreams.
When September was good, I barely started relearning how to go out and be outside of myself, try to rediscover those friendships I care about. I went out to dinner with Possible Girl. I went back to the bar. I went to a party. Just getting my feet wet.
My neurologist says that my brain thinks pain is very important. We find something new to confuse it for as along as possible but it's trying to get back to the pain. When it finds it again, we go to something new. I like him better than the migraine clinic. The clinic is more aggressive, which was great short-term, but now that they've kind of blown their wad, he still has lots of ideas and worries about things like my long-term health and if my medications are killing my kidneys. But the point is, we'll keep working on finding things to trick my brain and keep getting chunks of time without pain. And each chunk of time I'm not in pain, I'll keep learning how to live a double life. And maybe I can take some of my this-is-just-how-it-is migraine-life acceptance into the bright places, and maybe I can take some of my human contacts and friends with me back into the dark.
Because October, thus far, sucked. I've gotten some good days. But more than half the days have been bad with some really bad. Today was particularly rotten with light and sound kicking my ass and logic evading me at every corner. When I curl up into myself, I want it to be about someone else for a change. I've had enough of me. I'm reading, looking for contact on the internet, but obviously it's not the same. I may call a friend tonight and deal with the pain of mechanised cell phone sound. Tell me a story of you.
Monday, September 06, 2010
When I'm in pain, I feel like I can't get a grip on my life and the few things I can control I desperately cling to and force into storylines.
When I'm clear, I feel like I'm all hands and I don't know how to just live. I went out tonight and felt so sober and awkward, I didn't know how to just be. Nervous, out of balance, I wanted to scream. I could have gone home, but I stayed out. Mu usual signals to go home, like I get tired or start to feel the booze or people I'm talking to leave, just didn't exist. So hour after hour it was like I was waiting for the fun or the human connection or the sign that the world is beautiful. Instead, I finally spoke to the guy who had been sitting next to me and he was a magnified version of everything that was disgusting myself about my own awkward. He'd brought with him a sketch book, half a dozen artist pencils, pencil sharpener, and eraser but spent hours on the outline of a single cartoon-like character's head an 11-year-old could have drawn. His t-shirt tucked into his jeans belted high above the waist and the way his fat collected above his belt, in the seat of his pants, and in his face all added to the 11-year-old affect. I wasn't in much of a mood to give him a chance to redeem himself, but when the bartender said something about his drink also not containing alcohol, I asked why not.
"I just don't have much of a taste for it."
I asked why come to a bar then (he hadn't spoken a word to another human being since I'd sat down hours earlier).
"For the conversation. You don't get the social element at Hardees or McDonalds."
At this point he physically shifted forward waaay into my bubble. In as few sentences as possible I closed up my bag and escaped.
So is that me? Not even to middle school in my ability to interact with other people? And at the same time, I keep questioning what I'm doing with myself, letting my brain rot away, doing my sad bits of male scouting at a bar?
It's 2 AM, I'm still not tired. I'm going to go read. Like, a novel. I'm PMSed and on too many medications that make me want to climb walls and throw up angry things. Where's my fucking dog?
When I'm clear, I feel like I'm all hands and I don't know how to just live. I went out tonight and felt so sober and awkward, I didn't know how to just be. Nervous, out of balance, I wanted to scream. I could have gone home, but I stayed out. Mu usual signals to go home, like I get tired or start to feel the booze or people I'm talking to leave, just didn't exist. So hour after hour it was like I was waiting for the fun or the human connection or the sign that the world is beautiful. Instead, I finally spoke to the guy who had been sitting next to me and he was a magnified version of everything that was disgusting myself about my own awkward. He'd brought with him a sketch book, half a dozen artist pencils, pencil sharpener, and eraser but spent hours on the outline of a single cartoon-like character's head an 11-year-old could have drawn. His t-shirt tucked into his jeans belted high above the waist and the way his fat collected above his belt, in the seat of his pants, and in his face all added to the 11-year-old affect. I wasn't in much of a mood to give him a chance to redeem himself, but when the bartender said something about his drink also not containing alcohol, I asked why not.
"I just don't have much of a taste for it."
I asked why come to a bar then (he hadn't spoken a word to another human being since I'd sat down hours earlier).
"For the conversation. You don't get the social element at Hardees or McDonalds."
At this point he physically shifted forward waaay into my bubble. In as few sentences as possible I closed up my bag and escaped.
So is that me? Not even to middle school in my ability to interact with other people? And at the same time, I keep questioning what I'm doing with myself, letting my brain rot away, doing my sad bits of male scouting at a bar?
It's 2 AM, I'm still not tired. I'm going to go read. Like, a novel. I'm PMSed and on too many medications that make me want to climb walls and throw up angry things. Where's my fucking dog?
Saturday, September 04, 2010
Mouse Hunt
I killed a mouse Thursday. Snap trap and plum. Only I didn’t kill the mouse, it somehow set of the snap trap and escaped with the plum. I should have known then it had an accomplice.
I killed a mouse last night, this time for real. I moved the snap trap and used smaller bait: just enough muenster cheese to cover the bait part of the trap. It seems to have worked, because the mouse was very dead in the morning.
I would and could have set down glue traps, covered traps, other things that require less contact with the mouse, but these are actually less humane and less effective. As for a live trap, I live in the city. I’m not driving over an hour so some urban-adapted little shitter can go get eaten by his more wilderness-prone cousins.
So ding, dong the mouse was dead and I went about cleaning up the disgusting poop it managed to leave under my kitchen sink and behind my kitchen cabinets.
All mopped, every surface disinfected, so what the fuck still smells like mouse shit?
I’m not happy I now recognize the smell of mouse shit. I have nose that rivals most of the animal kingdom, a trait that’s been entertaining in my antiques/vintage acquisition. I already think cling wrap has a smell and my ice maker has a smell, so adding “mouse poop” to the olfactory equation has me homicidal and I already killed the mouse.
Or so I thought.
No mouse is an island.
A smaller, completely black mouse darted across the kitchen tonight. Darted across my freshly mopped floors. I yelled and I banged on things and I told it I was buying a shot gun. It seemed lost. It went for the washing machine and tried to come back out again with no real direction. Maybe I killed off the mouse responsible for acquiring food and making poop, and now this mouse is looking for answers. If I could show this mouse the door and no other mice or bugs or vermin ever crept across my threshold again, I would show this mouse my mercy. Otherwise, I want to blow it to hell.
I fear my kitchen floor boards don’t make it all the way to the walls and there’s a zoo living in what I judge to be my downstairs neighbor’s heating duct, creeping up into my kitchen at night to feed and poop.
My dog is useless.
Does Illinois require a license to buy a flame-thrower?
I killed a mouse last night, this time for real. I moved the snap trap and used smaller bait: just enough muenster cheese to cover the bait part of the trap. It seems to have worked, because the mouse was very dead in the morning.
I would and could have set down glue traps, covered traps, other things that require less contact with the mouse, but these are actually less humane and less effective. As for a live trap, I live in the city. I’m not driving over an hour so some urban-adapted little shitter can go get eaten by his more wilderness-prone cousins.
So ding, dong the mouse was dead and I went about cleaning up the disgusting poop it managed to leave under my kitchen sink and behind my kitchen cabinets.
All mopped, every surface disinfected, so what the fuck still smells like mouse shit?
I’m not happy I now recognize the smell of mouse shit. I have nose that rivals most of the animal kingdom, a trait that’s been entertaining in my antiques/vintage acquisition. I already think cling wrap has a smell and my ice maker has a smell, so adding “mouse poop” to the olfactory equation has me homicidal and I already killed the mouse.
Or so I thought.
No mouse is an island.
A smaller, completely black mouse darted across the kitchen tonight. Darted across my freshly mopped floors. I yelled and I banged on things and I told it I was buying a shot gun. It seemed lost. It went for the washing machine and tried to come back out again with no real direction. Maybe I killed off the mouse responsible for acquiring food and making poop, and now this mouse is looking for answers. If I could show this mouse the door and no other mice or bugs or vermin ever crept across my threshold again, I would show this mouse my mercy. Otherwise, I want to blow it to hell.
I fear my kitchen floor boards don’t make it all the way to the walls and there’s a zoo living in what I judge to be my downstairs neighbor’s heating duct, creeping up into my kitchen at night to feed and poop.
My dog is useless.
Does Illinois require a license to buy a flame-thrower?
Tuesday, August 31, 2010
Who Knows Best
FDA: Do not take these drugs together.
Doctor: It's ok, you can take these drugs together.
My body: Why the fuck did you take those drugs together?
At least, as of today, I'm finally recognizing the symptoms of the serotonin reaction shit. Also very weird, the increased dose of my MAOI started taking very obvious effect about a week ago, a week and a half after the increase. Now I feel everything else louder and louder, but at least I'm not in pain. I just hate the want-to-throw-up-the-inside-of-my-toes feeling. I'm making an executive decision and taking a half-dose of the offending drug tonight until I can talk to my doctor in the morning. I JUST WANT TO WORK RIGHT AND FEEL RIGHT AND NOT FUCKING THINK ABOUT IT ALL THE FUCKING TIME.
Doctor: It's ok, you can take these drugs together.
My body: Why the fuck did you take those drugs together?
At least, as of today, I'm finally recognizing the symptoms of the serotonin reaction shit. Also very weird, the increased dose of my MAOI started taking very obvious effect about a week ago, a week and a half after the increase. Now I feel everything else louder and louder, but at least I'm not in pain. I just hate the want-to-throw-up-the-inside-of-my-toes feeling. I'm making an executive decision and taking a half-dose of the offending drug tonight until I can talk to my doctor in the morning. I JUST WANT TO WORK RIGHT AND FEEL RIGHT AND NOT FUCKING THINK ABOUT IT ALL THE FUCKING TIME.
Monday, August 23, 2010
Sun Ray Sting Ray
It's beautiful out. I tried to help pack the car and the sun stabbed me in the eyeballs. I was and still am wearing my giant sunglasses. I came back in and still felt it piercing all the way through the inside of my skull. I couldn't complete a sentence. I still feel it. I want to hold on until HDS leaves. Then it will be silent again and I can bury my head in my pillow and my dog can curl up in any room he wants. I will have as long as I need to be alone; this is my human contact time and the end of my HDS time and my chance to soak it up, pain or not.
If I still feel like this tomorrow, maybe I'll go to the migraine clinic for extra shots. Too many days of really bad.
Whine whine whine.
If I still feel like this tomorrow, maybe I'll go to the migraine clinic for extra shots. Too many days of really bad.
Whine whine whine.
More Pain, More Thoughts
My brand of love scares away boys and sets back feminism 40 years. Writing about love is gauche now, anyway. That's why I get migraines--to give me something to write about. It's a through-line to my story, a regular source of conflict, and a free pass to be self-involved.
Free pass is putting it nicely.
Screaming internal distraction that makes it hard to notice much else. Unless I lose myself in something. Today I spent a very long time figuring out how much something listed in an obscure currency decades ago would cost today (as in, today dollars versus then shekels, not how much it's actually worth today). I edited photos, tried to write product descriptions, got frustrated and heard my brain fizzling, and finally settled in to watch a gazillion episodes of Twin Peaks.
I wanted to be functional this weekend. I even saved my shots this week and drugged up Saturday morning. No good. Pain pain pain since Friday. Before that, too? I don't really remember when this bout started. It's been a bad one. HDS leaves tomorrow and her husband and friend came to pick her up. I wanted to have a nice goodbye weekend. I want to feel well enough to know want.
I'm supposed to go out to see my mom on Tuesday and maybe go shopping with her. It's been less than seven weeks since she was diagnosed with cancer. Now she may be fine to drive and shop again. That's amazing. She's so lucky and we're so lucky and everything has been so amazing. But there's a part of me that also struggles with her getting better and better while I have no real "better" in sight. Mine isn't scary, mine can't kill me. That's huge. But there are no walks, no ribbons, no support groups, no t-shirts, no awareness months, no product lines, and no foreseeable relief for my migraines. I will never be a "survivor," and that's appropriate because there was never any threat. Cancer is something you survive. But migraines are something you suffer.
I don't expect life to be easy, I just feel the things that aren't.
Everything is true at the same time, Reality is the version accepted by the majority.
Free pass is putting it nicely.
Screaming internal distraction that makes it hard to notice much else. Unless I lose myself in something. Today I spent a very long time figuring out how much something listed in an obscure currency decades ago would cost today (as in, today dollars versus then shekels, not how much it's actually worth today). I edited photos, tried to write product descriptions, got frustrated and heard my brain fizzling, and finally settled in to watch a gazillion episodes of Twin Peaks.
I wanted to be functional this weekend. I even saved my shots this week and drugged up Saturday morning. No good. Pain pain pain since Friday. Before that, too? I don't really remember when this bout started. It's been a bad one. HDS leaves tomorrow and her husband and friend came to pick her up. I wanted to have a nice goodbye weekend. I want to feel well enough to know want.
I'm supposed to go out to see my mom on Tuesday and maybe go shopping with her. It's been less than seven weeks since she was diagnosed with cancer. Now she may be fine to drive and shop again. That's amazing. She's so lucky and we're so lucky and everything has been so amazing. But there's a part of me that also struggles with her getting better and better while I have no real "better" in sight. Mine isn't scary, mine can't kill me. That's huge. But there are no walks, no ribbons, no support groups, no t-shirts, no awareness months, no product lines, and no foreseeable relief for my migraines. I will never be a "survivor," and that's appropriate because there was never any threat. Cancer is something you survive. But migraines are something you suffer.
I don't expect life to be easy, I just feel the things that aren't.
Everything is true at the same time, Reality is the version accepted by the majority.
Wednesday, August 18, 2010
Lake Street Red Line Stop on a Wednesday Afternoon
Two men singing on the el platform with their permit clearly visible.
One plays guitar and sings melody, the other harmonizes.
They sway.
The harmonizer smiles.
The guitar player has long grayed dreads. He’s thin but not hungry, looks faded and worn but without pain. His skin is graying. His shiny black guitar looks gray under the subway lights.
His voice is anything but gray. Warm and mellow, like honey, like the 1960s folk that bore him. You can hear the hope and marijuana round the edges of each phrase.
The harmonizer reminds me of the old smiling Sambo images. Less bright, less ridiculous, but retaining a bit of the please-the-white-man quality. Still, his voice is pure and adds a dimension to the familiar tunes.
Police officer with his big german shepherd sitting not 10 feet away, staring.
The German Shepherd is watching the permit
The police officer isn’t watching much of anything.
A train comes and the guitar player leans into a concave *beam* to retune.
I drop a dollar into the bag with the permit.
A woman walks past. She is so large her legs sink down, burying her feet and her flip flops.
One plays guitar and sings melody, the other harmonizes.
They sway.
The harmonizer smiles.
The guitar player has long grayed dreads. He’s thin but not hungry, looks faded and worn but without pain. His skin is graying. His shiny black guitar looks gray under the subway lights.
His voice is anything but gray. Warm and mellow, like honey, like the 1960s folk that bore him. You can hear the hope and marijuana round the edges of each phrase.
The harmonizer reminds me of the old smiling Sambo images. Less bright, less ridiculous, but retaining a bit of the please-the-white-man quality. Still, his voice is pure and adds a dimension to the familiar tunes.
Police officer with his big german shepherd sitting not 10 feet away, staring.
The German Shepherd is watching the permit
The police officer isn’t watching much of anything.
A train comes and the guitar player leans into a concave *beam* to retune.
I drop a dollar into the bag with the permit.
A woman walks past. She is so large her legs sink down, burying her feet and her flip flops.
Saturday, August 07, 2010
Pad My Walls
I've got the crazies tonight. The pain was mostly gone today, but all the other fucked up shit diminutively classified as "aura" rendered me insane. It's so strange that when I get like this I can write. I can do a number of other random things quite well, too. Hopefully tomorrow I won't discover that I destroyed, offended, or bankrupted anyone, but I think I got a lot of work done. Walking the dog, I was ready to chainsaw the trees after 30 seconds of the cicadas. I hate the fucking cicadas. Crickets chirp; cicadas scream like electronics, but they ebb and swell so you can't forget they're there, vibrating at the frequency of your skull.
So I thought I was hungry. I'd been munching snap peas all afternoon, but perhaps red meat would cure my homicidal crankiness. I browned ground beef, planning to add one of the Trader Joe's Indian eggplant pouch things as an instant, no-thought sauce, but then I found a can of ranchero something soup with a recipe that sounded good and we had all the ingredients. So instead of three minutes and my nice fake Indian weird beef thing, it was 30 minutes for my fake Mexican weird beef thing. When it was done, I opened the oven and grabbed at the metal without thinking--no oven mitt. I can write but I can't use a stove.
Oven hot. No touch. Four-year-olds understand this. I'm alternating typing and icing my pointer finger.
Possible Boy and I had talked about seeing a movie tonight. At some point this afternoon I considered inviting him over to watch a movie, or doing some quiet but still social activity with him. Then I stand up and everything is wooziness and I try doing basic household crap and realize how scary I look. I don't want to hide all the time and only see friends when I'm glowing, but the bad stuff is easier to ride out quietly at home where I don't have to consider the variables. I'm not sure how to maintain friendships this way, but tonight I'm curled up afraid of myself and still trying to figure out how to get back to my parents' house to help out as soon as possible.
Cancer trumps migraine. Cancer kills.
So I thought I was hungry. I'd been munching snap peas all afternoon, but perhaps red meat would cure my homicidal crankiness. I browned ground beef, planning to add one of the Trader Joe's Indian eggplant pouch things as an instant, no-thought sauce, but then I found a can of ranchero something soup with a recipe that sounded good and we had all the ingredients. So instead of three minutes and my nice fake Indian weird beef thing, it was 30 minutes for my fake Mexican weird beef thing. When it was done, I opened the oven and grabbed at the metal without thinking--no oven mitt. I can write but I can't use a stove.
Oven hot. No touch. Four-year-olds understand this. I'm alternating typing and icing my pointer finger.
Possible Boy and I had talked about seeing a movie tonight. At some point this afternoon I considered inviting him over to watch a movie, or doing some quiet but still social activity with him. Then I stand up and everything is wooziness and I try doing basic household crap and realize how scary I look. I don't want to hide all the time and only see friends when I'm glowing, but the bad stuff is easier to ride out quietly at home where I don't have to consider the variables. I'm not sure how to maintain friendships this way, but tonight I'm curled up afraid of myself and still trying to figure out how to get back to my parents' house to help out as soon as possible.
Cancer trumps migraine. Cancer kills.
Friday, August 06, 2010
Pathological
Pathology report: lymph nodes all clear. No chemo necessary. Woohoo!
My mom had to have a second, though minor, surgery because her skin wasn't healing properly from the first surgery.
My dad has been by her side every possibly moment, bringing much of his work to the hospital and actually taking his years of accumulated time off. He has been an absolute super hero. Under normal circumstances, he likes doing as many things as physically possible. He's mellowed down some so that he can now wait in line without exploding, but he used to send each member of the family to stand in a different check-out line and then we'd all join whoever got to the counter first. If there were fewer lines than family members, my father would bounce back and forth between lines, check things out at the front, go back and shop some more or do whatever he found to keep himself occupied. The man couldn't stand still. As adults, my siblings and I refuse to participate in the efficient but rude multiline blitz.
I try to be there for my mom as often as I can so my dad and my brother don't have to. My dad hadn't cleared his work schedule to take my mom home after the unexpected second surgery so I planned to be there Tuesday and Wednesday. Thanks to the migraines and everything I've had to do to fight them, I'm no longer bothered by blood and IVs and all that, plus I'm female and not modest so I can help my mom get undressed and dressed.
Driving back and forth these past few weeks, I've somewhat abused my Torodol: nothing that will kill me, but a bit much for keeping it effective.
Tuesday, HDS stayed home from work because the inside of her head burned. I went to the hospital to find my mother quite chipper. She was walking around before they had her out of recovery and wanted real food as soon as the nurse could find her an unplanned turkey sandwich. Considering how much trouble she had with the anesthesia the first time, we were all pleasantly surprised.
Meanwhile, I took one of the alcohol wipes and bandaids laying around and gave myself another shot of Torodol. My sunglasses never came off.
My mom, who had surgery, was doing fine and better all the time. I, who had all my parts intact, got worse and worse. Sound, smells, all the usuals but no amount of caffeine or drugs seemed to stave them off.
I wigged out. There was nowhere I could hide in the hospital that was dark or quiet. Everything buzzed and hummed and beeped. I'd find a dark hall or stairwell only to step in and activate motion censor fluorescent lights. It was light a bad nightmare. I curled up in a corner behind a doorway where at least no one was around and cried and cried because it hurt so much.
I cried because I felt like I had no right to my pain, here on a post-op hospital ward.
Mine can't kill me.
But my mom will get better. My mom will be a cancer survivor.
I went back to her room and sat in a chair in the dark part while my dad tried to fuss over making it darker for me. I'm not sure what I said or did at that point but I figured I'd just sleep in the corner until the pain blew over. Then my mom said my dad and brother were going to both drive me home so my car would be back at my house and that was what she wanted and they would deal with Wednesday because I needed to take care of myself.
Lots of gratitude and I was home. I give my family a lot of credit for this one.
That night it stormed so loud the lightning woke me.
My mom had to have a second, though minor, surgery because her skin wasn't healing properly from the first surgery.
My dad has been by her side every possibly moment, bringing much of his work to the hospital and actually taking his years of accumulated time off. He has been an absolute super hero. Under normal circumstances, he likes doing as many things as physically possible. He's mellowed down some so that he can now wait in line without exploding, but he used to send each member of the family to stand in a different check-out line and then we'd all join whoever got to the counter first. If there were fewer lines than family members, my father would bounce back and forth between lines, check things out at the front, go back and shop some more or do whatever he found to keep himself occupied. The man couldn't stand still. As adults, my siblings and I refuse to participate in the efficient but rude multiline blitz.
I try to be there for my mom as often as I can so my dad and my brother don't have to. My dad hadn't cleared his work schedule to take my mom home after the unexpected second surgery so I planned to be there Tuesday and Wednesday. Thanks to the migraines and everything I've had to do to fight them, I'm no longer bothered by blood and IVs and all that, plus I'm female and not modest so I can help my mom get undressed and dressed.
Driving back and forth these past few weeks, I've somewhat abused my Torodol: nothing that will kill me, but a bit much for keeping it effective.
Tuesday, HDS stayed home from work because the inside of her head burned. I went to the hospital to find my mother quite chipper. She was walking around before they had her out of recovery and wanted real food as soon as the nurse could find her an unplanned turkey sandwich. Considering how much trouble she had with the anesthesia the first time, we were all pleasantly surprised.
Meanwhile, I took one of the alcohol wipes and bandaids laying around and gave myself another shot of Torodol. My sunglasses never came off.
My mom, who had surgery, was doing fine and better all the time. I, who had all my parts intact, got worse and worse. Sound, smells, all the usuals but no amount of caffeine or drugs seemed to stave them off.
I wigged out. There was nowhere I could hide in the hospital that was dark or quiet. Everything buzzed and hummed and beeped. I'd find a dark hall or stairwell only to step in and activate motion censor fluorescent lights. It was light a bad nightmare. I curled up in a corner behind a doorway where at least no one was around and cried and cried because it hurt so much.
I cried because I felt like I had no right to my pain, here on a post-op hospital ward.
Mine can't kill me.
But my mom will get better. My mom will be a cancer survivor.
I went back to her room and sat in a chair in the dark part while my dad tried to fuss over making it darker for me. I'm not sure what I said or did at that point but I figured I'd just sleep in the corner until the pain blew over. Then my mom said my dad and brother were going to both drive me home so my car would be back at my house and that was what she wanted and they would deal with Wednesday because I needed to take care of myself.
Lots of gratitude and I was home. I give my family a lot of credit for this one.
That night it stormed so loud the lightning woke me.
Thursday, August 05, 2010
Saturday, July 31, 2010
Don't Call Me Shirky: Over 800 People Can't Be Wrong
Birdie sent this to me with the note "This reminded me of the content of some of your blog posts. Plus, it is so funny and I thought you would LIKE IT."
Hyperbole and a Half: This is Why I'll Never be an Adult
Yes. Me + cartoons = that post. And it's funny.
What amazes me is that it has over 800 comments. Eight hundred people feel this way.
My expectations are so high that anything less than perfection gets thrown together in the "I am garbage" pile. "Unable to cure cancer," "didn't email back friend," and "forgot to pay parking ticket" all fall in the same wretched half of my black-and-white world. I go through Allie's responsibility cycle, worked into my very own ballet of self-loathing.
Why?
Over 800 random-ass blog readers responded to say they do the same damn thing. What's going on that so many people's expectations of "normal adulthood" knock them into the fetal position?
We have this strange luxury of choice, this ability to do things with our time other than find food and fight predators. We need what we need to stay alive. Then there's the next layer of the things we need to make life worth living. This is the crap people kill for and die for, things that inspire epic poetry, Opera and phone commercials.
Then there's everything else. There's just so much everything else. It's unnecessary and overwhelming, but it also helps all the people live a little smoother and it can be beautiful and add to the "worth living." But bullshit and junk and imaginary importance and stress stress stress make me run back to being a child, when all the grown-up nonsense is supposed to look like nonsense. I personally made the mistake of taking grown-up nonsense seriously as a child, which makes a lot more sense when you think about it--making noise and writing on lots of papers and everybody picking a title and wearing funny things to signify what they're supposed to be is much more of a child's game than the business of the life-learned. Send me to school now that I need daily gym class, now that I can understand the practical applications of economics, and could really use a refresher course in sharing.
With real mortality-related things happening in my life right now, I have much less luxury of choice. Dealing with my mother's needs and just sucking it up is exhausting, but it certainly reminds me I am and can be an adult. Last night the stress and weather finally won over my over-medicating hyperdrive and I crashed hard. In a strange way, I was glad because it somehow re-legitimized my migraines; like my body made it abundantly clear I'm not just being a pussy and I can't just push through and be OK.
My mom's ok and I'll write more later. Now I need to nap so I can go to my parents' house for dinner.
Hyperbole and a Half: This is Why I'll Never be an Adult
Yes. Me + cartoons = that post. And it's funny.
What amazes me is that it has over 800 comments. Eight hundred people feel this way.
My expectations are so high that anything less than perfection gets thrown together in the "I am garbage" pile. "Unable to cure cancer," "didn't email back friend," and "forgot to pay parking ticket" all fall in the same wretched half of my black-and-white world. I go through Allie's responsibility cycle, worked into my very own ballet of self-loathing.
Why?
Over 800 random-ass blog readers responded to say they do the same damn thing. What's going on that so many people's expectations of "normal adulthood" knock them into the fetal position?
We have this strange luxury of choice, this ability to do things with our time other than find food and fight predators. We need what we need to stay alive. Then there's the next layer of the things we need to make life worth living. This is the crap people kill for and die for, things that inspire epic poetry, Opera and phone commercials.
Then there's everything else. There's just so much everything else. It's unnecessary and overwhelming, but it also helps all the people live a little smoother and it can be beautiful and add to the "worth living." But bullshit and junk and imaginary importance and stress stress stress make me run back to being a child, when all the grown-up nonsense is supposed to look like nonsense. I personally made the mistake of taking grown-up nonsense seriously as a child, which makes a lot more sense when you think about it--making noise and writing on lots of papers and everybody picking a title and wearing funny things to signify what they're supposed to be is much more of a child's game than the business of the life-learned. Send me to school now that I need daily gym class, now that I can understand the practical applications of economics, and could really use a refresher course in sharing.
With real mortality-related things happening in my life right now, I have much less luxury of choice. Dealing with my mother's needs and just sucking it up is exhausting, but it certainly reminds me I am and can be an adult. Last night the stress and weather finally won over my over-medicating hyperdrive and I crashed hard. In a strange way, I was glad because it somehow re-legitimized my migraines; like my body made it abundantly clear I'm not just being a pussy and I can't just push through and be OK.
My mom's ok and I'll write more later. Now I need to nap so I can go to my parents' house for dinner.
Wednesday, July 28, 2010
Sunday, July 25, 2010
Ways to Help
My mom went home today. My dad has been with her since she had her surgery, sleeping in the chair beside her hospital bed. My parents can be infinitely annoying and occasional emotionally abusive, but they are pretty incredible.
Today is the first day since Tuesday I won't see my mother. I'm relieved. Starting tomorrow, much of her daily care will fall to my brother and me. He lives there for the summer, so he has less ability to escape. I have to remember it is not my job, that her friends can take up some of the slack.
Yesterday, while I was feeding her ice chips, my mom started complaining to me about one of her friends and went on her standard bitch-and-moan about her mother and one of her clients and other flawed people in her life. She's keeps checking to make sure she's not overburdening me with the physical stuff--repeats over and over I don't have to feed her or help her stand or poke at the bloody things unless I'm comfortable--but I've never been able to properly communicate how uncomfortable I am being her emotional support system, and now seems a cruel time to say something. I feel so backwards--help from her local adult daughter post-double mastectomy is a huge act of charity; therapeutic services have been assumed since I was 4. I never had to do the dishes or take out the trash, maybe I just got the emotional trash instead. And my parents still don't expect any sort of physical, visible work, but perhaps to them it's a greater burden to do something than to feel something. Not me.
I'll be back at their house tomorrow night and it will be emotionally draining, too, but it's emotionally draining sitting at my house.
The cicadas are loud again tonight. Crickets chirp, cicadas scream. The sound swells and ebbs in irregular waves. I never see them, but I hear them. They are monsters.
Today is the first day since Tuesday I won't see my mother. I'm relieved. Starting tomorrow, much of her daily care will fall to my brother and me. He lives there for the summer, so he has less ability to escape. I have to remember it is not my job, that her friends can take up some of the slack.
Yesterday, while I was feeding her ice chips, my mom started complaining to me about one of her friends and went on her standard bitch-and-moan about her mother and one of her clients and other flawed people in her life. She's keeps checking to make sure she's not overburdening me with the physical stuff--repeats over and over I don't have to feed her or help her stand or poke at the bloody things unless I'm comfortable--but I've never been able to properly communicate how uncomfortable I am being her emotional support system, and now seems a cruel time to say something. I feel so backwards--help from her local adult daughter post-double mastectomy is a huge act of charity; therapeutic services have been assumed since I was 4. I never had to do the dishes or take out the trash, maybe I just got the emotional trash instead. And my parents still don't expect any sort of physical, visible work, but perhaps to them it's a greater burden to do something than to feel something. Not me.
I'll be back at their house tomorrow night and it will be emotionally draining, too, but it's emotionally draining sitting at my house.
The cicadas are loud again tonight. Crickets chirp, cicadas scream. The sound swells and ebbs in irregular waves. I never see them, but I hear them. They are monsters.
Saturday, July 24, 2010
Not Real Sucky
Headline News on mute in my mother's hospital room has been nonstop coverage of Lindsay Lohan. I don't have to look up the spelling of her name online because I can look up and it's on the TV. Still.
There are four clear turkey baster bulbs attached to four clear tubes attached to the incisions in my mother's chest. The body tries to heal the wounds, sends blood and fluid, and something needs to be sucked out. The tubes are stretchy and need to be squeezed clear of blood clots. Then we have to empty the bulbs and measure the fluid.
I don't have to do any of this. I volunteered. I'm strangely good at it, except when I tried to feed her the applesauce and got more on her than in her. At least I thought to bring the applesauce. All natural, NOT chunky, no sugar added. My dad said she'd been really nauseous all day, and I'm an expert at nauseous. She has dry mouth, too, way worse than I ever did but at least I understand the feeling. Ice chips mixed with the apple sauce trumped everything the hospital tried to feed her. You'd think hospitals would know these kinds of things, but I suppose it's different for everyone. We're related, so I imagine our reactions are far more similar. Nausea requires cold. Cold and wet, but not clammy. I'll often run my wrists under cold water at rest stops to battle the car sickness. My mom was grateful and amazed that I knew to put ice chips on her wrists when she was at her wooziest. But with her, with Cancer, with life in general, there's so much beyond my and anyone's control. I want to say it's "nice" to be able to make her feel better in little ways for even a moment, but "nice" the wrong word. It's all I can do and I'll take it.
The past few days have been filled with heat waves and electrical storms and flash flooding. Our power went out three times in the last week, only once while it was raining. Driving to the hospital today traffic signals were out or blinking all over the place. Transformers 3 filmed in Chicago last weekend, with explosions and parachuting and fireballs. Tuesday HDS and I sat on the Wao Bao patio at State and Lake and heard a huge blast. Most people didn't even look up.
I feel like the world is getting more and more absurd. There's crazy shit all over and we have our far-fetched explanations because if you stop and really think about any of it, the whole universe is too insane to be real. My dreams make more sense than my awake. Nothing makes real sense, we just stretch and accept whatever gets put before us. We're incredibly flexible creatures. Turkey basting my mother's chest? Why not.
There are four clear turkey baster bulbs attached to four clear tubes attached to the incisions in my mother's chest. The body tries to heal the wounds, sends blood and fluid, and something needs to be sucked out. The tubes are stretchy and need to be squeezed clear of blood clots. Then we have to empty the bulbs and measure the fluid.
I don't have to do any of this. I volunteered. I'm strangely good at it, except when I tried to feed her the applesauce and got more on her than in her. At least I thought to bring the applesauce. All natural, NOT chunky, no sugar added. My dad said she'd been really nauseous all day, and I'm an expert at nauseous. She has dry mouth, too, way worse than I ever did but at least I understand the feeling. Ice chips mixed with the apple sauce trumped everything the hospital tried to feed her. You'd think hospitals would know these kinds of things, but I suppose it's different for everyone. We're related, so I imagine our reactions are far more similar. Nausea requires cold. Cold and wet, but not clammy. I'll often run my wrists under cold water at rest stops to battle the car sickness. My mom was grateful and amazed that I knew to put ice chips on her wrists when she was at her wooziest. But with her, with Cancer, with life in general, there's so much beyond my and anyone's control. I want to say it's "nice" to be able to make her feel better in little ways for even a moment, but "nice" the wrong word. It's all I can do and I'll take it.
The past few days have been filled with heat waves and electrical storms and flash flooding. Our power went out three times in the last week, only once while it was raining. Driving to the hospital today traffic signals were out or blinking all over the place. Transformers 3 filmed in Chicago last weekend, with explosions and parachuting and fireballs. Tuesday HDS and I sat on the Wao Bao patio at State and Lake and heard a huge blast. Most people didn't even look up.
I feel like the world is getting more and more absurd. There's crazy shit all over and we have our far-fetched explanations because if you stop and really think about any of it, the whole universe is too insane to be real. My dreams make more sense than my awake. Nothing makes real sense, we just stretch and accept whatever gets put before us. We're incredibly flexible creatures. Turkey basting my mother's chest? Why not.
Wednesday, July 14, 2010
Staring at the Sun
My mom is being amazing. She's optimistic and rational and moved by all the support she's receiving. I'm so impressed. She was built for this. I very much wish she didn't have cancer and we're only a week into knowing it's there, but at least it's acting as the smack-in-the-face we all sometimes need to remember what it means to be alive.
I'm also completely freaked out and not sure what else to feel or think, so alive is a pretty good place to concentrate.
I'm also completely freaked out and not sure what else to feel or think, so alive is a pretty good place to concentrate.
Sunday, July 11, 2010
My mom just called to let me know she has breast cancer.
She just found out. It's apparently one of the least bad kinds and she sounds pretty positive about the whole thing. My response was "That sucks, I'm sorry, do you need anything? I love you."
She said she kept thinking, "Oh no, now my daughters have a mom who had breast cancer."
Maybe all our day-to-day negativity and pessimism is just a way of saving our hope and optimism for the big stuff. I always say about my migraines, "it's not cancer and it can't kill me." Well, my mom has cancer. Maybe the distraught hasn't hit yet. Maybe today's just a day I'm accepting things. One foot is already in a dream. My mom has to have cancer to show her the meaning of life. That's how the story goes. We all learn things and understand things and hurt and cry and bloom. I've seen this movie. Now it's our turn to live it.
She just found out. It's apparently one of the least bad kinds and she sounds pretty positive about the whole thing. My response was "That sucks, I'm sorry, do you need anything? I love you."
She said she kept thinking, "Oh no, now my daughters have a mom who had breast cancer."
Maybe all our day-to-day negativity and pessimism is just a way of saving our hope and optimism for the big stuff. I always say about my migraines, "it's not cancer and it can't kill me." Well, my mom has cancer. Maybe the distraught hasn't hit yet. Maybe today's just a day I'm accepting things. One foot is already in a dream. My mom has to have cancer to show her the meaning of life. That's how the story goes. We all learn things and understand things and hurt and cry and bloom. I've seen this movie. Now it's our turn to live it.
Thursday, July 08, 2010
Clear, Fog
The rain is so light it barely textures the surface of clear, still Lake Michigan. I can see angular boulders make a path under the water and I want to walk rock to rock until the water submerges me, too.
Like a plow, the beach comber made its shrinking circles around the sand. My dog and I stood at the top of the concrete steps separating beach from city to watch and wait. The machine seemed to change its course to finish the section in front of us. It felt like he was combing that bit just for us, but I figured it was more like finishing off a golf hole. We stood and watched his figure eights disappear unswept sand, and then he honked and waved for us to come down to the beach; he had changed his course for us. We were royalty. In cotton shorts, flip flops and a t-shirt, I commanded a presence. Sometimes I forget I'm not invisible.
Since the hospital, I've been feeling better in that I'm more inclined to get shit done and only had bad pain yesterday evening through now. I was crazy light sensitive before that, but light's not bugging me anymore.
I feel like I'm in a temporal hiccup where I constantly cross paths with past, present, and future versions of myself. These sorts of lessons get learned much faster on television.
Like a plow, the beach comber made its shrinking circles around the sand. My dog and I stood at the top of the concrete steps separating beach from city to watch and wait. The machine seemed to change its course to finish the section in front of us. It felt like he was combing that bit just for us, but I figured it was more like finishing off a golf hole. We stood and watched his figure eights disappear unswept sand, and then he honked and waved for us to come down to the beach; he had changed his course for us. We were royalty. In cotton shorts, flip flops and a t-shirt, I commanded a presence. Sometimes I forget I'm not invisible.
Since the hospital, I've been feeling better in that I'm more inclined to get shit done and only had bad pain yesterday evening through now. I was crazy light sensitive before that, but light's not bugging me anymore.
I feel like I'm in a temporal hiccup where I constantly cross paths with past, present, and future versions of myself. These sorts of lessons get learned much faster on television.
Saturday, July 03, 2010
Discharge
I'm leaving the clinic today. I still have a migraine.
In the hospital, I don't have to remember my pills and meals all day. I don't worry about paying bills, running errands, making plans. They take care of me.
They also struggle to find my veins so they can then shoot me full of drugs. The IV lines start to hurt almost immediately, and after a day, ice packs and deep breathing are no match for the excrutiating pain ripping into my hand and burning its way up my arm.
They do this in the middle of the night, too.
And the food 65% sucks.
At home I take care of myself. It's hard for me. I see couples taking care of eachother and I'm jealous, but I push people away so I can prove to myself that I'm capable. HDS doesn't do dishes. Another friend of mine doesn't drive in the city or on highways. Other people don't kill bugs or clean showers. The longer I'm alone, the more I'm forced to learn.
Lately, I've been a stagnant smog of indecision. I've been turning to other people for excuses to go one way or another on all choices. HDS refuses to make decisions for me because she knows I'm just looking for a way to blame someone else for the outcome. Maybe that's the only way I know how to let myself off the hook; everything is someone's fault, so how can it be not mine?
I now have to wear a medical alert bracelet for my MAOI patch. Honestly, I'm glad. I want something to show for all this fucking pain.
All the other symptoms, too.
In some ways, I belong in a hospital. My memory is swiss cheese. Faces blend together. Being fucked up in the hospital is ok. But at home I want to run around and go to the bar and see friends. At home, I have a very hard time keeping up with friendships. People (Neighbor Guy) take it personally when you repeatedly cancel plans. Other friends stop calling when they don't want to bug you in case you have a headache. It takes that much more effort when you have that much less energy. But today I so desperately want out of this fucking hospital and the IVs out of my veins, I'm taking charge and responsibility and out out out.
In the hospital, I don't have to remember my pills and meals all day. I don't worry about paying bills, running errands, making plans. They take care of me.
They also struggle to find my veins so they can then shoot me full of drugs. The IV lines start to hurt almost immediately, and after a day, ice packs and deep breathing are no match for the excrutiating pain ripping into my hand and burning its way up my arm.
They do this in the middle of the night, too.
And the food 65% sucks.
At home I take care of myself. It's hard for me. I see couples taking care of eachother and I'm jealous, but I push people away so I can prove to myself that I'm capable. HDS doesn't do dishes. Another friend of mine doesn't drive in the city or on highways. Other people don't kill bugs or clean showers. The longer I'm alone, the more I'm forced to learn.
Lately, I've been a stagnant smog of indecision. I've been turning to other people for excuses to go one way or another on all choices. HDS refuses to make decisions for me because she knows I'm just looking for a way to blame someone else for the outcome. Maybe that's the only way I know how to let myself off the hook; everything is someone's fault, so how can it be not mine?
I now have to wear a medical alert bracelet for my MAOI patch. Honestly, I'm glad. I want something to show for all this fucking pain.
All the other symptoms, too.
In some ways, I belong in a hospital. My memory is swiss cheese. Faces blend together. Being fucked up in the hospital is ok. But at home I want to run around and go to the bar and see friends. At home, I have a very hard time keeping up with friendships. People (Neighbor Guy) take it personally when you repeatedly cancel plans. Other friends stop calling when they don't want to bug you in case you have a headache. It takes that much more effort when you have that much less energy. But today I so desperately want out of this fucking hospital and the IVs out of my veins, I'm taking charge and responsibility and out out out.
Wednesday, June 30, 2010
My room has a great view; the "lounge" gives you a 90º view of Lake Michigan, two boat harbors, and a huge green stretch of Lincoln Park. Between fluffy trees I see the morning joggers, large enough to differentiate but too small to judge from a 9th floor window. Green and light blue shirted women passing black shirted man. Black tank top and short hair taking an exhausted stretch between sets on the pull-up bars. Dirty blonde pony tail heavily bouncing stride, stride, stride, stride...
Even with the runners and the cars, everything looks so still. It's hard to believe time is passing at all.
If all goes well, I'm out of here Sunday. Fourth of July. I can go home and celebrate and watch fireworks without pain. That's the new goal.
Even with the runners and the cars, everything looks so still. It's hard to believe time is passing at all.
If all goes well, I'm out of here Sunday. Fourth of July. I can go home and celebrate and watch fireworks without pain. That's the new goal.
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