this year marks the first time i remember being able to really eat a thanksgiving meal, and i'm incredibly thankful for that. usually i eat about half a plate, push it away, and then succumb to feeling crappy. i always heard it was normal to feel bad after a turkey day gorging, so i never worried about it. only now do i realize i was feeling miserable after 400 calories, while others had packed in thousands. so yeah, today i ate a reasonable to full sized meal of thanksgiving favorites and felt ok. take that food allergies and digestive disorders! of course my mom had to read every label while grocery shopping and had to go to several stores, and we had to be careful when preparing everything, but i actually ate a really great (and normal, for what that's worth) thanksgiving dinner.
i'm in pennsylvania for the holiday and another thing i'm thankful for is that i don't live here. thank god i got out of here while there was still a chance for me to come out ok! wow, i didn't realize how "small town" the place i grew up was. many of the houses are at least half an acre apart, and there are only a few subdivisions. while i'm thankful that the land isn't overdeveloped, in the abstract, i feel like i'd go a little crazy living in a place so sparsely populated. this is actually worse than the shitty midwestern college town where i went to grad school. the internets can apparently tell that i'm in PA now, and all the ads have changed to PA. my favorite, so far, is "local singles near (my bumfuck tiny town)!" yeah, i can't imagine there being a singles scene here. there's like one bar six miles away and most people who are still single at my age live in their parents' basements. awesome!
ok, so things still undecided. i'm thankful for having options for different things to do with my life, but i still don't really know what to do with them. i have about ten seconds left before i have to decide whether or not to go back to grad school. applications are due very soon, and i need to get recommendation letters from a variety of people in my past. i'm especially still trying to figure out what to do with my life as a sickly person. while the costs of maintaining my health are at a historic low, i'm afraid things will change while i'm in graduate school (and possibly underinsured). i was just in san francisco on business and vacation, and i tried to throw myself into a lot of different situations to see how i'd react. i was really happy being in a city, and thought that could be something to look forward to. however, i was basing that on crashing at a friend's house, and staying at a Generic But Nice Conference Hotel.
So I decided to give myself a more ... authentic ... city experience. I stayed at a small independent hotel on the last day, which was more like a city apartment complex. To call my room a studio would be an exaggeration. In any case, the building was fairly old, and the mold really got to me. I woke up in the middle of the night with breathing trouble, and had a headache and felt sluggish much of the time i stayed there. I really worry about whether I can live in a city at all as a sickly person of little means. I had to leave apartments in grad school before due to mold issues, and that was expensive enough in some tiny midwestern town. In a big city, I don't know if it would be negotiable at all. And on top of the fact that rent is higher and hence switching places would be more difficult, getting allergy-friendly food could also be costlier. Sigh. I feel like I'm putting myself at risk for becoming seriously, seriously in debt. That's really hard to deal with, since I've spent the whole time since I left grad school trying to recover from health and financial issues associated with living in moldy buildings. I can't imagine telling myself to put it off another year, or indefinitely, until I can totally afford all of my health costs without the threat of going into debt (haha like that will ever be possible), but maybe i should.
on the flip side... there are lots of benefits to living in a city. it's *so* much easier to find hypoallergenic prepared foods in most cities. i eat so well when i'm visiting big cities. sure, there are a handful of restaurants in my native durham that i can eat at, but after you've eaten at each one over a dozen times it gets old. And sure, I can cook my own special food, but that's hard when you're coming home at 8:30 after an 11 hour long work day (and due to your acid reflux, you should have eaten at 6:30 pm). Other benefits of the city... would be the ability to walk a lot of places. moderate exercise is actually really helpful for most asthmatics, and i generally feel better when i stay in cities and walk a lot. also, one of my top choice schools is in canada, so i could get on the canadian healthcare system after a little waiting. i can't even imagine what my life would be like if i didn't have to constantly worry about health costs. maybe i would be so happy and free that i'd never want to come back. just maybe. lastly, i feel mentally healthier in cities. i feel like i fit in more when i'm out of town than when i'm home. my parents were city people and raised me that way, but i haven't ever been able to fully put it to use. i want to meet other difficult, bitter urban hardasses out there, and see what sort of beautiful and delightful interactions might result.
argh. It would be hard enough to decide whether to stay in my current job or whether to go to grad school as a healthy person, so it's just that much harder when you have all this sickly stuff to take into account.
Thursday, November 27, 2008
Tuesday, November 4, 2008
Being sick is a lot of work!
[This is a first draft of a piece I'm working on for the zine on physical illness]
In our economy, everything that we do is work. First, there's the obvious fact that more of our time, energy, and intellect is channeled into some sort of profitable activity. But more than that, everything else that we do is in the service of our labor. We arrange eating, sleeping, socializing, fucking, and our whole lives around the work day. We drug ourselves with caffeine and other stimulants to be better workers, and then drop anti-anxiety meds or sleeping pills to get a good night's sleep for the day ahead. Natural human life has been pathologized, medically treated, and eradicated. Lots of us have to spend our "spare" time and money on clothes and other styling products so that we look like the right class, race, or gender so that we "fit the culture" of our workplaces (because we we're not good enough as we are). Vacations are given so that we can be better workers; if that wasn't the case, we probably wouldn't have them anymore. Even time spent doing social networking and blogging is producing content for the consumption of others, providing a space for advertisements, and presenting identities embedded within consumer culture.
Sickness is seen as a challenge to this work culture. It's offensive to industry that some bodies aren't always available for use. While total health is the exception, not the rule, it's valued in our capitalist culture and thus presented as a norm, the same way that certain races, genders, classes, and sexualities are differentially valued by business. This differential valuation on the basis of health is not without consequences. Whether or not illness significantly impairs one's work, being "out" as ill often raises questions about one's (dis)abilities in the workplace. Many managers worry (aloud, or silently) that an illness or a disability is going to make you a crappier worker.
But sickness itself is work. We have to perform a lot of labor to keep our bodies going for our own reasons and also to be good employees. Non-work time is spent at doctor's offices, haggling with insurance companies, preparing special foods, changing dressings, driving across town to find the right kind of medicine, taking a vacation at the Mayo Clinic, having surgeries, and queuing in pharmacies. Since many doctors and nurses don't have enough time to explain our conditions, much less find radical new treatments for them, we're stuck spending more and more time educating ourselves. We spend a whole lot of time learning how not to be sick, which is like transferring labor from the medical industry to us as individuals.
The labor of staying healthy becomes a moral requirement of being a worker and citizen in this day and age, and doing anything that makes you less healthy is like a rejection of the system. It's a whole new application of rational choice theory- if you can figure out how not to be sick, you should, and if you know, you should do everything you can to stay healthy so that you're not holding yourself or your company back. Consequently, communicable illness is becoming an issue of personal responsibility, rather than the natural action of bacteria and viruses on their own. You found them, rather than them finding you! Is it possible that you got a cold because you didn't wash your hands before eating lunch one day? That's irresponsible!
People suffering from diseases that are not entirely randomly acquired (like environmental exposures, or sexually transmitted diseases) know this better than anyone else. They're often asked if they could have avoided getting sick somehow, and why they didn't. In some cases this can amount to victim blaming (it's YOUR fault that you're sick), and should be rejected outright. Also, it's the sick person's own decision whether or not to become a walking-talking spokesperson for their illness, explaining to everyone where it comes from and how to avoid it. While discussing one's illness can be vital to improving your own health and that of others, it shouldn't be obligatory labor, and especially doesn't need to be performed unquestioningly at the demand of curious healthy people.
Sick life actually ends up demanding more adherence to traditional labor as well, as many people with illnesses are chained to jobs forever for adequate healthcare or to repay medical care debts. Since there are not adequate safeguards for sickness in our society, many sick people take on increasingly professional jobs so that they'll have more money to spend on health care or better insurance. When we are out sick, we have to work twice as hard to make up for lost time. Many of us also overcompensate to quell any concerns that we're not doing well enough. As a result, we're forced to accept the better/faster/more/now mentality of contemporary business, and put up with the conformist nature of the work environment to keep these jobs. When things do go wrong in the workplace, we have less freedom to complain since many of us can't take any risk of losing our jobs. Ironically, it's those that need the most flexibility that often receive the least.
If nothing is done to change work culture as it is these divisions will only grow deeper. The few lucky ones who haven't had medical problems will go further and further, while a growing underclass will be effectively enslaved into work for their entire lives due to health care costs. Imagine a world where you can't take care of your sick and aging parents, or go do hurricane relief work, or take a vacation because you were sick earlier in the year, all because you need health insurance or you're stuck with previous medical costs. Oh wait, most of us are already there! It's just going to get worse if nothing is done to change the system how it is.
You might ask yourself what can possibly be done. The system is so dysfunctional and unweildy that it can be hard to imagine how to change it. But it's essential that you find some way to be active in health politics. Find a way to write, organize, or create art that addresses these issues. Bring it up at political meetings organized around other topics. Root out able-ism in other movements. Be as vocal in the workplace as you can be. If you're not sickly, learn to understand the limitations of others and provide compassionate support. If you're sickly, do what it takes to live a life that you find is respectful and worth living!
In our economy, everything that we do is work. First, there's the obvious fact that more of our time, energy, and intellect is channeled into some sort of profitable activity. But more than that, everything else that we do is in the service of our labor. We arrange eating, sleeping, socializing, fucking, and our whole lives around the work day. We drug ourselves with caffeine and other stimulants to be better workers, and then drop anti-anxiety meds or sleeping pills to get a good night's sleep for the day ahead. Natural human life has been pathologized, medically treated, and eradicated. Lots of us have to spend our "spare" time and money on clothes and other styling products so that we look like the right class, race, or gender so that we "fit the culture" of our workplaces (because we we're not good enough as we are). Vacations are given so that we can be better workers; if that wasn't the case, we probably wouldn't have them anymore. Even time spent doing social networking and blogging is producing content for the consumption of others, providing a space for advertisements, and presenting identities embedded within consumer culture.
Sickness is seen as a challenge to this work culture. It's offensive to industry that some bodies aren't always available for use. While total health is the exception, not the rule, it's valued in our capitalist culture and thus presented as a norm, the same way that certain races, genders, classes, and sexualities are differentially valued by business. This differential valuation on the basis of health is not without consequences. Whether or not illness significantly impairs one's work, being "out" as ill often raises questions about one's (dis)abilities in the workplace. Many managers worry (aloud, or silently) that an illness or a disability is going to make you a crappier worker.
But sickness itself is work. We have to perform a lot of labor to keep our bodies going for our own reasons and also to be good employees. Non-work time is spent at doctor's offices, haggling with insurance companies, preparing special foods, changing dressings, driving across town to find the right kind of medicine, taking a vacation at the Mayo Clinic, having surgeries, and queuing in pharmacies. Since many doctors and nurses don't have enough time to explain our conditions, much less find radical new treatments for them, we're stuck spending more and more time educating ourselves. We spend a whole lot of time learning how not to be sick, which is like transferring labor from the medical industry to us as individuals.
The labor of staying healthy becomes a moral requirement of being a worker and citizen in this day and age, and doing anything that makes you less healthy is like a rejection of the system. It's a whole new application of rational choice theory- if you can figure out how not to be sick, you should, and if you know, you should do everything you can to stay healthy so that you're not holding yourself or your company back. Consequently, communicable illness is becoming an issue of personal responsibility, rather than the natural action of bacteria and viruses on their own. You found them, rather than them finding you! Is it possible that you got a cold because you didn't wash your hands before eating lunch one day? That's irresponsible!
People suffering from diseases that are not entirely randomly acquired (like environmental exposures, or sexually transmitted diseases) know this better than anyone else. They're often asked if they could have avoided getting sick somehow, and why they didn't. In some cases this can amount to victim blaming (it's YOUR fault that you're sick), and should be rejected outright. Also, it's the sick person's own decision whether or not to become a walking-talking spokesperson for their illness, explaining to everyone where it comes from and how to avoid it. While discussing one's illness can be vital to improving your own health and that of others, it shouldn't be obligatory labor, and especially doesn't need to be performed unquestioningly at the demand of curious healthy people.
Sick life actually ends up demanding more adherence to traditional labor as well, as many people with illnesses are chained to jobs forever for adequate healthcare or to repay medical care debts. Since there are not adequate safeguards for sickness in our society, many sick people take on increasingly professional jobs so that they'll have more money to spend on health care or better insurance. When we are out sick, we have to work twice as hard to make up for lost time. Many of us also overcompensate to quell any concerns that we're not doing well enough. As a result, we're forced to accept the better/faster/more/now mentality of contemporary business, and put up with the conformist nature of the work environment to keep these jobs. When things do go wrong in the workplace, we have less freedom to complain since many of us can't take any risk of losing our jobs. Ironically, it's those that need the most flexibility that often receive the least.
If nothing is done to change work culture as it is these divisions will only grow deeper. The few lucky ones who haven't had medical problems will go further and further, while a growing underclass will be effectively enslaved into work for their entire lives due to health care costs. Imagine a world where you can't take care of your sick and aging parents, or go do hurricane relief work, or take a vacation because you were sick earlier in the year, all because you need health insurance or you're stuck with previous medical costs. Oh wait, most of us are already there! It's just going to get worse if nothing is done to change the system how it is.
You might ask yourself what can possibly be done. The system is so dysfunctional and unweildy that it can be hard to imagine how to change it. But it's essential that you find some way to be active in health politics. Find a way to write, organize, or create art that addresses these issues. Bring it up at political meetings organized around other topics. Root out able-ism in other movements. Be as vocal in the workplace as you can be. If you're not sickly, learn to understand the limitations of others and provide compassionate support. If you're sickly, do what it takes to live a life that you find is respectful and worth living!
cancer blogs
Though cancer isn't my physical illness, I've known several people who've gone through it and have recently been inspired by some cancer blogs I've found. I think they're an interesting example of how the internet can be used by sick people to express what they're going through, educate, organize, and advocate.
Here they are, in no particular order:
Fuck cancer, I'm Ezra/Teaching Cancer to Cry
Archives of a Breast Cancer Survivor
Crazy Sexy Cancer Blog
Blog for a Cure/Cancer Sucks
(lots of cancer blogs in one place)
The Stupid Cancer Blog
I'm sure there are many others worth mention, but these are just the ones I've come across. Let me know or comment if you have suggestions for others!
Here they are, in no particular order:
Fuck cancer, I'm Ezra/Teaching Cancer to Cry
Archives of a Breast Cancer Survivor
Crazy Sexy Cancer Blog
Blog for a Cure/Cancer Sucks
(lots of cancer blogs in one place)
The Stupid Cancer Blog
I'm sure there are many others worth mention, but these are just the ones I've come across. Let me know or comment if you have suggestions for others!
Zine on Physical Illness
Hey all,
Initially, I was doing love/sickness as a place to start writing material for a zine on physical illness. Lucky for me someone else is doing one right now! I'm including the call for submissions below. This seems to be a great project with a supportive organizer!
CALL FOR SUBMISSIONS ON PHYSICAL ILLNESS
I am currently seeking submissions for a zine/pamphlet on physical illness. This project aims to give voice to the experiences of people living with illness, serve as a resource for those who are diagnosed with illness, and further the dialogue around issues related to support and illness. While I am principally seeking submissions from those who have experienced or are currently living with a serious physical health problem, I am also very interested in submissions from those who have indirectly experienced illness: caregivers, community members, partners, family members, etc.
Some possible topics include:
Personal narratives of living with illness • Illness and support within left / radical / DIY scenes • Intersections of race / gender / sexuality / class / culture and illness • Experiences with doctors, hospitals and treatments • Body image / identity and illness • Disempowerment / empowerment of illness • Mental health and physical illness • Suggestions for navigating the world of being a 'patient' • The experiences of being a caregiver • Suggestions for providing support to someone living with illness • Creating and sustaining community support networks • How life changes after a diagnosis • Living with multiple diagnoses • Illness as taboo • Insurance • The financial burden of illness • Sex and illness • Illness and creativity • Illness and isolation • The invisibility of illness
The deadline for submissions is December 30, 2008.
Please be in touch with questions and submission ideas: illnesszine at gmail.com
Spread the word!
Initially, I was doing love/sickness as a place to start writing material for a zine on physical illness. Lucky for me someone else is doing one right now! I'm including the call for submissions below. This seems to be a great project with a supportive organizer!
CALL FOR SUBMISSIONS ON PHYSICAL ILLNESS
I am currently seeking submissions for a zine/pamphlet on physical illness. This project aims to give voice to the experiences of people living with illness, serve as a resource for those who are diagnosed with illness, and further the dialogue around issues related to support and illness. While I am principally seeking submissions from those who have experienced or are currently living with a serious physical health problem, I am also very interested in submissions from those who have indirectly experienced illness: caregivers, community members, partners, family members, etc.
Some possible topics include:
Personal narratives of living with illness • Illness and support within left / radical / DIY scenes • Intersections of race / gender / sexuality / class / culture and illness • Experiences with doctors, hospitals and treatments • Body image / identity and illness • Disempowerment / empowerment of illness • Mental health and physical illness • Suggestions for navigating the world of being a 'patient' • The experiences of being a caregiver • Suggestions for providing support to someone living with illness • Creating and sustaining community support networks • How life changes after a diagnosis • Living with multiple diagnoses • Illness as taboo • Insurance • The financial burden of illness • Sex and illness • Illness and creativity • Illness and isolation • The invisibility of illness
The deadline for submissions is December 30, 2008.
Please be in touch with questions and submission ideas: illnesszine at gmail.com
Spread the word!
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