seanan_mcguire (![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
seanan_mcguire) wrote2009-09-16 06:39 am
seanan_mcguire) wrote2009-09-16 06:39 am
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Invisible conditions and the hyperkinetic author.
This is National Invisible Chronic Illness Awareness week, which is something I consider to be genuinely important. We're an appearance-based society, to a large extent, and "you don't look sick" is a far-too-common statement. ![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
talkstowolves has posted about her experiences living with temporomandibular joint dysfunction (TMJD), as well as a variety of other conditions. It's very eye-opening. Meanwhile, jimhines has posted about the frightening financial realities of diabetes.
I don't have an invisible chronic illness. What I have is an invisible chronic disability. At some point during my early to mid-teens, I managed to severely herniate three disks in my lower lumbar spine (L3-L5, for the morbidly curious). Because I was extremely overweight at the time, every doctor I saw for more than ten years said "lose weight and the pain will go away," and didn't look any deeper to see why a twenty-three year old woman was staggering into their offices screaming whenever she put her foot down and unable to straighten without vomiting.
Because the body learns to cope with things, I eventually recovered enough mobility to decide to do what the doctors were telling me, went on Weight Watchers, and lost over a hundred pounds. This wasn't as hard as it might have been, because I am a) a naturally picky eater and b) naturally really, really, "was walking a mile every morning to the convention center at the San Diego International Comic Convention, because that calmed me down enough to move calmly through the crowds" hyperactive. So "here, eat lettuce and do aerobics," not exactly the most difficult thing I'd ever heard.
Sadly, it turned out that the doctors were wrong. Being severely overweight may have made things worse, but it didn't cause the injury, and a year and a half of hard aerobics definitely made things worse. In the fall of 2007, I began experiencing numbness of my right side, culminating in losing all feeling in my right leg and nearly falling into traffic when I suddenly couldn't walk. That's when a doctor finally slapped me into an MRI machine, went "oh, crap," and started dealing with my actual injuries.
I look totally healthy. I walk quickly. I move sharply. I am 5'7", reasonably young, and apparently able-bodied. But sometimes I sit in the "people with disabilities" seats, because I literally can't stand on the train for the duration of my commute. Sometimes I glaze over while I'm talking to people, because my sciatic nerve has started screaming like my leg is full of fire ants, and I'm trying to figure out a polite way to excuse myself to go take painkillers. Sometimes I keep walking at a crazy death-march pace because I can feel the numbness creeping back, and if I don't get to my destination before I lose the temporary use of my leg, I'm going to be stuck. That's just how life is.
We may eventually pursue surgical solutions—right now, I'm doing physical therapy, restricted forms of exercise, and trying to work out a detente with my own limitations. They aren't bad enough to qualify me for full-time disability, just bad enough to be inconvenient, invisible, and keep me off roller coasters. Sometimes I meet people who blow off my limits as "whining" or "being lazy." They don't stay part of my life for long.
So please, this week, and every week, remember that appearances are deceiving; like books and their covers, you can't judge a person's health by how fast they're moving. They may just be outrunning the collapse.
talkstowolves has posted about her experiences living with temporomandibular joint dysfunction (TMJD), as well as a variety of other conditions. It's very eye-opening. Meanwhile, jimhines has posted about the frightening financial realities of diabetes.I don't have an invisible chronic illness. What I have is an invisible chronic disability. At some point during my early to mid-teens, I managed to severely herniate three disks in my lower lumbar spine (L3-L5, for the morbidly curious). Because I was extremely overweight at the time, every doctor I saw for more than ten years said "lose weight and the pain will go away," and didn't look any deeper to see why a twenty-three year old woman was staggering into their offices screaming whenever she put her foot down and unable to straighten without vomiting.
Because the body learns to cope with things, I eventually recovered enough mobility to decide to do what the doctors were telling me, went on Weight Watchers, and lost over a hundred pounds. This wasn't as hard as it might have been, because I am a) a naturally picky eater and b) naturally really, really, "was walking a mile every morning to the convention center at the San Diego International Comic Convention, because that calmed me down enough to move calmly through the crowds" hyperactive. So "here, eat lettuce and do aerobics," not exactly the most difficult thing I'd ever heard.
Sadly, it turned out that the doctors were wrong. Being severely overweight may have made things worse, but it didn't cause the injury, and a year and a half of hard aerobics definitely made things worse. In the fall of 2007, I began experiencing numbness of my right side, culminating in losing all feeling in my right leg and nearly falling into traffic when I suddenly couldn't walk. That's when a doctor finally slapped me into an MRI machine, went "oh, crap," and started dealing with my actual injuries.
I look totally healthy. I walk quickly. I move sharply. I am 5'7", reasonably young, and apparently able-bodied. But sometimes I sit in the "people with disabilities" seats, because I literally can't stand on the train for the duration of my commute. Sometimes I glaze over while I'm talking to people, because my sciatic nerve has started screaming like my leg is full of fire ants, and I'm trying to figure out a polite way to excuse myself to go take painkillers. Sometimes I keep walking at a crazy death-march pace because I can feel the numbness creeping back, and if I don't get to my destination before I lose the temporary use of my leg, I'm going to be stuck. That's just how life is.
We may eventually pursue surgical solutions—right now, I'm doing physical therapy, restricted forms of exercise, and trying to work out a detente with my own limitations. They aren't bad enough to qualify me for full-time disability, just bad enough to be inconvenient, invisible, and keep me off roller coasters. Sometimes I meet people who blow off my limits as "whining" or "being lazy." They don't stay part of my life for long.
So please, this week, and every week, remember that appearances are deceiving; like books and their covers, you can't judge a person's health by how fast they're moving. They may just be outrunning the collapse.
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Of course, after I had explained everything in detail, one person still said, "Yeah, okay, whatever, junkie."
Then I learned the pure futility of arguing with someone over the internet when that person is so intent on being right, and I decided to just let it go, let it slide past me... but it never truly slides past. It still hurts, when a faceless stranger throws those words at you. Because all you have are words on a computer screen.
I hope you make more posts like this. I love the way your mind works. It's mostly why I am adoring Rosemary and Rue, because your words feel so true and you don't hold back.
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People are hurtful on the Internet because they know they can be, and one bad comment resonates like ten positive ones. Stupid psyche.
I'm really glad you're enjoying Rosemary!
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I've read studies saying that if you are taking painkillers to truly kill pain, it is extremely difficult to become addicted. But if you keep on taking them when you are in less pain, you are more likely to become addicted. I know this, obviously, but people don't seem to understand that I am a smart little cookie, I really can look after myself! *shakes head*
People are hurtful on the Internet because they know they can be, and one bad comment resonates like ten positive ones. Stupid psyche.
This would make a great quote. May I take it and attribute it to you?
Also, I have a question about Toby. She has obviously been through so much and still is so strong. Did your own struggles with disability influence that?
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In regards to Toby...I grew up below the poverty line in California. That, more than anything, influenced and created the class divides in Faerie, and taught me that I needed heroines who could get the crap kicked out of them and still keep on doing what had to be done.
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I can relate, growing up below the poverty line in New York, specifically Brooklyn in the '80s. My parents, as artists, worked for the building manager in exchange for free rent and utilities, so they could devote time to making their art and raising a disabled child. I think that may have given me some influences in my own writing, because my heroines are gentle and kind and made of steel on the inside, and I think my parents helped shaped that image (also, my teachers, doctors, and physical therapists calling me a "steel flower" probably helped).
I have been taking away a lot of things about Toby Daye that you probably didn't intend when you created her, actually. But I like to think that a great writer creates characters that reflect well, that have all these facets and dimensions that even the writer might not be aware of.
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Yeah, taking meds as prescribed to try to function? Not a junkie. Physical dependence may happen (and hell, it happens with LOTS of meds, even blood pressure pills, dipshits), but addiction, not likely. Those people piss me off. Big time.
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My mother-in-law had a masectomy in 2004 and was give morphine for several months. She developed a mild physical dependency, but got past it well enough. I mean, it was for post-cancer surgery pain, for gods' sakes. She didn't need chemotherapy or radiation, just massive painkillers, as she already had a degenerative hip bone disease where her hip bones were crumbling, so for her, ibuprofen and Flexeril were like candy. But I never saw any addiction there, because her body devoured the medication to use for, hey pain-killing.<.i>
My reaction to Soma is similar to the tale of the Lotus Eaters in "Odysseus" -- lie back, stare at the ceiling with a dopey, blissed-out grin, laughing at every little thought, but that's because my frakking pain and tension is gone. I am suddenly free to do thinks that are not overshadowed by pain and hypertonia. People who do not have chronic pain would look at me funny, but this is my life.
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On the one hand, yes I recognize that it has enormous potential for abuse. On the other hand, it *makes the pain stop*. Making the pain stop is *awesome*.
I don't actually have chronic illness, I just have some really jacked up genetics and a twisted skeletal system that breaks a lot. Generally, when I've broken something, the pain levels are way beyond OTC painkillers. And opiates generally don't *work* for me. Weird drug metabolism, on top of the weird skeletal issues. Muscle relaxants, though... Muscle relaxants are godlike, and I love them to death. There's nothing else that will do the job, when I'm having a bad day.
There's a handful of related statements that I've learned over the years about trying to argue with stupid people on the internet. Two of them are fairly mild, and one of them is kinda pejorative. I'll skip the pejorative for now. "Never argue with a pig, you'll both get dirty, but the pig likes it." "Never argue with an idiot, they'll drag you down to their level and then beat you with experience."
Consuming the drugs that make life worth living doesn't make you a junkie, and the morons that can't understand that aren't worth spitting on. Don't let the bastard grind you down.
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"Never argue with an idiot, they'll drag you down to their level and then beat you with experience."
Nice! I shall certainly remember that.
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Oh, I also am big on herbal supplements; I was raised that way and I do a ton of research. Have you tried Valerian, Passionflower, Magnesium, and L-Tryptophan? You may need to take large doses, but I have found that the combination works in some way for many people. They should be okay during the nursing period. How long do to plan to nurse?
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"Boo-boo." That's awesome. I love when babies and small children have their own words for things. It's like when I was a baby and called Snoopy "Noony."
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