things to be thankful for, things still undecided.

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.

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!

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!

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!

the abridged coming-out-as-sickly story

In the last post I provided an ultra detailed account of all my medical problems. In this one, I’m providing the quick and dirty version. If you have similar problems to me, I strongly recommend reading the longer account, but if not, the short version should be more than sufficient background.

***

This is my (abridged) coming out as sickly story.

I’m either immunologically fucked or I have too much immunity. I’m a sufferer of multiple auto-immune disorders: asthma, seasonal allergies, many food allergies, irritable bowel syndrome, gastro-esophageal reflux disorder (GERD, aka chronic heartburn), eczema, and arthritis. There have been times when I’ve been on the brink of death, and other (rare) times when I’ve been “okay” for awhile. Even a lot of people who know me, love me, or work with me don’t know this. But it’s a big part of my life, and I knew some people would understand or commiserate, so I decided it was time to come out.

For years I saw a different specialist for each disorder I had. I also had a primary care provider who would document the findings of all of these other doctors, but he could never tell me what it added up to (except for occasionally saying “you’re immunologically fucked”). So long as they kept me stocked on my meds, and had some scientific or medical explanation for what was wrong with me, I felt sort of satisfied. I rode this medical merry-go-round unquestioningly for twelve years.

Then last year I hit rock bottom. All of these problems sort of hit at once. The thing that was really causing me the most trouble was the irritable bowel syndrome. I’d given up most foods other than milk, bread, tomatoes, and meat, but somehow I was still really sick. I already knew I was allergic to all legumes (no more tofu, tempeh, beans, hummus, or veggie burgers) and a lot of vegetables, so I couldn’t really handle another food allergy diagnosis. I felt like if they took anything else away from me, I would crack and stab a specialist in the kidney (being sickly, I know just where the kidneys are located).

In any case, I got to a point where my body was hardly digesting food. Almost every meal passed right through me with little thought on the part of my digestive system. I felt like I had a knife in my stomach, a fire in my heart, and I was nauseated about half the time. I was also experiencing more headaches, sinus problems, and asthma attacks. I was always run-down and depressed, which is what happens when you’re badly malnourished. I felt like I was never going to get better, and was seriously wondering if I had anything left to live for. Somehow I was working my ass off and getting by professionally. God knows how.

I had totally exhausted my options within traditional Western medicine. Every time I saw a specialist they’d rehash the diagnosis of the specialists before them, and it was starting to feel like a waste of my time. I was having a hard time dealing with any asthma triggers at all (mold, seasonal allergies, exercise, the common cold), and my visits to my asthma doctor were getting increasingly desperate. “So … if I move I won’t get better… and if I take this medicine I won’t get better… and I took that one and I didn’t get better… So there’s really nothing you can do at all. Nothing that can make me feel alright EVER…”

I made an appointment to see an acupuncturist because I figured I had nothing to lose. I couldn’t get sicker, could I?

I had no idea just how much I had to gain. I have an awesome acupuncturist at Oriental Health Solutions in Durham, NC, and she has actually treated all of my problems successfully. I’ll go into more detail on how acupuncture and Chinese medicine can help for what’s wrong with me in another post, but suffice it to say that Chinese medicine has saved my life.

I learned from her that, as I’d already been thinking, all of these auto-immune disorders ARE related. Chinese medicine is a holistic practice, so they look to how certain meta-imbalances affect multiple systems. She said that the pancreas and intestines support immunity and the lungs, and said I had to improve those systems before I could expect to feel better on the asthma and allergies front. I didn’t believe it at first, but she gave me reason to believe.

She put me on herbs to balance my system and supplements to make up for my pancreatic deficiencies. And much to my surprise I STARTED DIGESTING FOOD AGAIN. All of a sudden, within a day or so of taking the supplements I was getting nutrition from the things I ate. It wasn’t a complete fix, and I’d learn shortly thereafter that my true and worst allergy was milk. I gave up milk and my asthma, allergies, and digestive problems mostly went away.

That’s not to say that I’m totally healthy and immunologically fabulous now. I still have to put a lot of work into staying healthy, and staving off my body’s natural imbalances. A cold can still be a lot more dangerous for me, and every now and then when I exercise I get that certain “oh, I can’t breathe” feeling. I can still be totaled by some milk powder put in bread at a fast food place. Or at a fancy restaurant. Basically anywhere that uses generic food service/SYSCO food is off my list. Hell, I’m on a whole anti-inflammatory diet now where I don’t eat any of my allergens (milk, legumes, and a handful of fruits and vegetables) OR wheat or sugar, so most restaurants are off my list in general.

This is partially my impetus for coming out as sickly. I gave up milk almost a year ago and people were like “OMG! How can you do that?” “HOW do you not feel soooo deprived” “Wow… that just sucks soooo bad!!!” Actually, in my experience having people talk about your food allergies is actually worse than having them. Sure it sucks to know I can probably never eat some local organic free range cheese again, but I know that avoiding it keeps me healthy. That’s worth it to me. Telling people wasn’t as easy or natural, and didn’t have a similar pay off. And you have to tell the story to EVERYONE who cooks for you, so you get pretty sick of people ooohing and aaahing over your troubles. The story never gets more fun to tell, but it’s always novel and shocking for new people to hear.

So I had to start telling people how sick I was to explain why I wasn’t eating milk any more. Most of my friends and family weren’t vegan, so they thought that it had to be something really bad to make giving up milk seem like an option. So I started telling people about all of the underlying problems. How I had undiagnosed digestive problems for all of high school, how the doctors never helped anyway once I was diagnosed, and how the times when I wasn’t returning calls it was often because I was too sick to get out of bed. And I experienced something I didn’t expect. I thought it was just a horrible story like any other horrible story, and that people would get over it easily enough. But people’s reactions were bigger than that, and it made me realize that chronic illness was bigger than I allowed it to be. It wasn’t just a road trip from hell, or a hangover of legendary proportions, or a boring wedding. It really was different than most people’s experience of life. Chronic illness had been one of the defining features of my life for years, and somehow I just never told anyone.

So here I am now, telling everyone, and telling you people on the internet. While the process of coming out as sickly has often been difficult and painful, the moments when people finally get it make it worth it. While I still ask for as few accommodations as possible, being that kind of person, it secretly warms my frosty heart whenever someone says “I made these brownies soy, milk, and gluten free for you.” Perhaps more touching are the rare moments where I meet other people that are sickly too, or others with secret food allergies. It is always a moment of triumph, of pleasure in difficulty, when you meet someone who has gone through a similar level of hell. Having the understanding of people who’ve also worn hospital bracelets is invaluable. While the internet is probably not as warm and inviting as my real-life interactions with other sickly people, it is my hope that by telling my story, and having people tell theirs, we can begin a whole other process of healing. Chronic physical illness has mental, emotional, and social tolls that often take a sideline to whatever is wrong with our tangible bodies, but it’s essential to find support, self-respect, and a life worth living, regardless of ability or impairment.

my full-length, super-detailed coming-out-as-sickly story

When I first started this blog, I was ready to write on about fifty topics. I felt like it was just a matter of time before I wrote them out, and that I’d be able to crank them out one a day. But in reality, it’s been a normal time in sickly life, and that’s slowed me down. I ate some things I was allergic to, I had a couple bad asthma days, and I spent a lot of time trying to make myself feel healthier. And of course I’ve been busy with working a hectic professional job that keeps me insured.

That aside… it’s time for the post on what’s wrong with me. It’s not going to be engrossing reportage, a new theory on how the medical industry should be structured, or a guidebook to curing any of these problems. It’s just going to be a personal narrative, written just as I experienced all of this crap. As a warning, it’s not going to start out on a hopeful note, but I promise it has an uplifting ending.

It’s also not going to be a sexy story. That’s not the point. Unlike so much writing and social networking on the internet, I’m not trying to impress you. I’m trying to help those who are sick to feel a little bit less alone, and help those who are able-bodied understand us a bit better. It’s a coming out story.

Hello, I’m consumerculturecritic, and I’m a chronically ill radical professional.

*******

I have been a long-time sufferer of asthma, severe seasonal allergies, numerous food allergies, irritable bowel syndrome, gastro-esophageal reflux disorder (GERD/acid indigestion), eczema, and arthritis. In other words, I have a lot of auto-immune disorders all piled up on each other. The degree to which these disorders have complicated my life has ebbed and flowed with time. There have been times when I was on the brink of death, and there have been (occasional) months where I was hardly held back at all. I’m a master at covering all of this up, so even most of my friends don’t know this about me.

In addition to the disorders, I’ve broken six bones, and had something or other go wrong with almost every part of my body. One of the bones I broke is still not right. I had chronic back problems throughout high school that left me in a stunning amount of pain, and I’ve been in a few car accidents that gave me whiplash. I broke my wrist and had to live without the use of one forearm/hand for a couple months. It was unfortunately while I was writing an undergraduate thesis, so I had to dictate all my notes and writing to the computer. There’s something off with my connective tissue and I’ve done a lot of damage to my body by playing sports and living in general. Put simply, I’ve experienced a lot of different kinds of disability that came and went, as well as dealt with chronic disorders. On the flip side, though, I never got a cold or flu until I was about 15, and only threw up on four occasions before I turned 18. Go figure. Maybe I’m like a SuperWoman of immunity… my body is so strong it constantly attacks itself.

It all started when I was born, I guess. I was a colicky, screamy, cough-y baby. I had ear infections from the get-go. I apparently had constant indigestion and was never happy. At the time (the early 80s) doctors didn’t realize that such symptoms could be warning signs of later health problems, and urged my mother “not to worry.”

When I started talking, I began the process of telling my parents just what was wrong with me. They immediately started having me treated for ear infections, which was a process that continued until about the age of 8. I was constantly on antibiotics and I had the “tube surgery” (and also had a stuck tube forcefully removed while fully conscious). None of this ever really helped; it just kept the infections from getting out of hand. I was nearly blind, and got glasses around the age of three. It’s kind of crazy to look back and realize that I was a three year old no fewer than three doctors.

I started developing skin problems around that time too. I got eczema on my arms, legs, and some other sort of psoriasis on my scalp. My most vivid memory of these problems was from the age of 6. Despite the fact that I had really bad skin problems my mom still made me wear white stockings to church. And sure enough, they got glued to my skin in the small spots with the skin problems. We had to cut them off and soak off the last bits.

Other than this, I had a pretty healthy childhood. As mentioned above, I was all but free from childhood illnesses, and only missed three days of school from grades K-12 (my mom spent a lot of time scheduling doctors’ appointments on Labor Day and MLK). These couple problems really weren’t that bad, and no one even knew about them. The kids had plenty of other reasons to pick on me, so illness didn’t play a major factor in my social life until later. The only really visible problems were when I broke my collar bone at 3 (same day as the ear tube surgery… keep kids off drugs!), slammed my finger in a car door at 6, and punched a wall during a fight at 9. That, and I was really small. I weighed 54 pounds at age 10. And 11. And 12.

In middle school, I started getting a little worse. Acid reflux came at the age of 10, and by middle school I mostly ate carbs, cheese, and meat because they hurt my stomach the least (the idea of eating vegetables hadn’t occurred to me yet). I got a sports injury at the age of 13 and it didn’t heal quite right. They said I was starting to get arthritis, and would probably have full blown arthritis by 18. We moved from the North to the South in middle school, and I had “real” allergies for the first time in my life. I felt stuffy, sick, and sluggish for months out of the year. I got bronchitis and it lasted for a month, in part because we weren’t fully insured and I couldn’t go to a doctor yet. My lungs weren’t the same for a long time after that. Soon, I wasn’t able to run any more. Not that I could ever run very much, or very fast, but at that point running became more or less impossible.

High school was medically one of the worst times of my life. I weighed 64 pounds for the first two years, and they put me on 3,000-5,000 calories a day. It didn’t help. My seasonal allergies were intolerable, and during the fall and spring I mostly passed out after school. The back aches came and were so bad that I’d have to roll around on the floor (this was before yoga) for about an hour before the pain went away enough for me to sleep. I had bad sinus headaches; in retrospect, I guess it was like a sinus infection for years. I had a cough and my chest felt tight all the time. My lung function was abysmal, and I started seeing a pulmonary doctor as often as monthly. My lungs looked like bone on the X-rays, and no one knew why. I went from never being sick to getting plenty of colds and a couple rounds with the flu (which is really devastating for asthmatics).

The sort of exemplary moment in this time was something that happened at band camp. One summer at band camp they made us run and stand at attention when it was over 100 degrees outside. I told our band director, who knew I was asthmatic, that I was feeling really, really bad, and he just made me run harder. I was having a really severe attack, the first of my life. We went indoors for lunch and afternoon practice, and everyone could tell that something was wrong. I couldn’t play my instrument at all, and I got a little grey/purplish in the skin. As is common with asthmatics, I didn’t really know what was going on or how to properly advocate for my health since I wasn’t getting enough oxygen to my brain. Finally, they sent me home. Unfortunately, band camp was 2.5 hours away from home, so I had to wait that long for my parents to get there, and then that long to be back in one of the leading medical cities on the east coast. In that time, I took my inhaler 4 times an hour instead of once every four hours, and I was sick enough that they made me drink several liters of Coke and eat a bunch of chocolate, since caffeine is a bronchodilator.

By the time I got home I’d stabilized, which I guess isn’t too surprising since I had far in excess of emergency doses of asthma meds. My doctor had called in a prescription for prednisone, an ingested steroid, and I was on it for several days (a week? Two?). Suffice it to say, I don’t remember much. I spent an entire week passed out. A whole goddamn week. I don’t mean “mostly passed out,” I mean I only got up to pee and apparently to take in a few calories (I think in the form of Coke, once again), and I don’t even remember that. I slept the whole time right where I landed when I arrived home from camp- on the floor right inside our living room.

That was the end of marching band forever. And sports for about a year, save for climbing. I tried to keep hiking and camping, but my lungs couldn’t handle it. A brisk walk took the wind out of me like an old lady.

The doctors were talking about a bronchoscopy with lung biopsy. I’d grown weary of the doctors and the medical treatment, which seemed to be a pain in the ass with no pay-off, so I refused this treatment. I technically didn’t have the legal ability to refuse treatment, but amazingly my mom let me. I can’t really believe that she did it, and out of scientific curiosity I still have some regret about not letting them cut out a tiny piece of my calcified lungs.

The next summer I had one of my more positive turning points. I got to go to MATH AND SCIENCE camp. Yes, it got nerdier than band camp. That’s what happens when you’re not healthy enough to play the xylophone on a warm day. Regardless… I had a GREAT time at math and science camp. Not only was it the first time that I started to feel healthy for a long time, it was one of the first times I’d felt happy in years. I met friends who have been with me ever since.

I realize now that I got better at science camp because I was in control of my own diet. I still ate a ton, because that’s what you do when you’re a 64 lb high school girl, but I got to pick whatever I wanted to eat from a college cafeteria. It was like a blessing from heaven, after having my calories counted and my eating constantly monitored for two full years. Eating became my private pleasure, my act of control over my life, and it was totally fabulous. My science camp diet was coincidentally very low in milk, which I later found out was my major food allergen and a trigger to my allergies and asthma. But we’re not there yet…

I went back to high school much healthier and 10 pounds heavier after 1 month of science camp. I got a used Buick LeSabre for my 16^th birthday and used it to continue my search for healthy and delicious foods. I started to eat Mexican food and vegetables. I was pretty OK for the last two years of high school, and ultimately put on 60 pounds in those years, which finally brought me up to a normal weight.

My first year of college hit me hard, though. I lived in an antiquated building at UNC, and I think that wasn’t good for my asthma. I caught every respiratory illness going around, and had sinus infections all the time. They started putting me on antibiotics for sinus problems, and some months I actually went through four courses of antibiotics in one month! The antibiotics wrecked havoc on my body, and I felt weak and sickly most of the time. I started out the year as a starter on the varsity fencing team, but ended the year as the only team member who didn’t letter. The problem was that I couldn’t cross-train. I was still pretty good at fencing, but I couldn’t run and participate in other team cross-training activities, and missed practices and one meet due to physical illness. The other team members, who were selected as elite all-around athletes, were very hard on me and did not accept my limits and disabilities. I was constantly harassed and called out as a wuss for not being able to run 4 miles (which is so necessary for fencing…). When we fenced against Duke, and one of their teammates had to forfeit a match due to an asthma attack, our team actually cheered. While I realized their reactions were shameful and unsportsmanlike, it was still helped push me into the sick person closet. After that kind of treatment, I really didn’t want anyone to know how sick I was. I treated my health issues like military secrets, and revealed them on a need-to-know basis.

Around this time I also developed irritable bowel syndrome. For some reason, lots of foods ran right through my body. The doctors couldn’t figure out the cause, and just gave me some mild anti-diarrheal medication to take before eating. For years I would only eat the least-offensive foods like salads when out with friends or partners, for fear of what other foods would do to my body. I told no one about this problem and consequently had to find lots of other excuses for my strange behaviors. Those who knew me when I was 64 lbs. were afraid that I’d been anorexic all along, so the scrutiny upon what I ate grew. My boyfriend’s parents were the worst, always criticizing what I ate, what I didn’t eat, and how little I ate. They thought my tastes and manners were really unrefined, but in reality most of the stuff they cooked me was eating holes in my intestines.

There weren’t many other major medical problems in college. For the most part, I just hovered at this not-very-well state for the whole time. This was also the start of the six years where I would get sick twice a year and be completely knocked out for a week or two each time. I’d get some sort of respiratory virus and be on bedrest until I got better, which is socially awkward to say the least. At least one of these incidents was attributable to Coxsackie virus B, which doesn’t make most people sick but basically had the effect of whacking me over the head with a lead pipe. After getting Coxsackie, I started experiencing inflammation of the sternum other times when I got sick, something that still happens to this day.

After college, I ran straight to a PhD program. Grad school was a pretty perfect place for a sickly person. I could be on bedrest for a month at a time and no one had to know, so long as I dragged myself out of the house a couple times a week for class. And that actually ended up happening.

One summer I moved into a house that was built shortly after the Civil War ended. I immediately became really sick and could do little else other than lay in bed for two weeks. I had really severe headaches and felt like I’d been punched in the back of the head. My lungs were totaled; I had emergency-level asthma attacks daily, but only had the energy to go to urgent care or the hospital for a breathing treatment every other day. I chalked it up to one of my summer asthma maladies- my lungs frequently couldn’t handle the high humidity, allergens, ozone, and reanimation of the Coxsackie B so wasn’t uncommon for me to be out of commission for a week or two each summer.

But then I realized what it was. I had dragged myself out of the house, still in my dreamy, groggy, confused, sick state, to try to study. And the headache went away. I thought hard (as hard as you can when you’re that sick) and I realized that each time I escaped the house, I felt better. I determined that my sickness was most likely due to mold, and tried to figure out where to go from there. It’s a really difficult situation, being allergic to one’s residence. I cried my eyes out when I figured out that I had to move immediately, not just because it is a pain in the ass to move in the June heat as an asthmatic, but also because I knew it would be incredibly difficult to find affordable mold-free accommodations in the college town where I lived.

As fucking horrible as that whole experience was, I feel like it was the beginning of my path to regaining some control over my health. I was forced to finally consider the behavioral and environmental factors that were making me sick. As difficult as it was to work around, I realized that I could be healthier with enough work. I moved to a place that luckily had enough mold-inhibiting factors (old plaster walls, a decent roof, top floor so no leaks from bathrooms above) that I could get by. I studied what it would take to find another such place when the time came.

The most important step was getting blood work done for my allergies. I was incredibly, incredibly lucky to have family working in the medical field, and realize that’s an advantage that most people don’t have. That’s part of the reason I feel like I have to write this stuff down. It took so much effort, so many doctors, and a lot of money to find out what was wrong with me, but in the process I’ve learned a lot that could help others.

What they found out about my allergies shocked me. I tested positive for my usual suspects- trees and ragweed. I didn’t really test positive for much else, not even mold. But the very skilled, caring allergist who analyzed my tests let me know that many people with my allergies cross-react to legumes. At the time I was a vegetarian, and I didn’t want to hear that hummus, bean burritos, locally produced tempeh, and TVP fake-chicken pie could have played a part in my downfall. But then I started to experiment with my diet. I would eat mostly safe foods and then would eat mega-doses of soy. I went to whole foods and ate a whole bowl of Thai style tofu. My face broke out in hives and my hands swelled. I’d been experiencing these symptoms on and off for a couple years, but had never connected it with the food I ate. Next I tried eating the vegan plate at my favorite Mexican restaurant, and once again my hands swelled, I got hives, I got acid reflux, and felt a bit pukey. I had some irritable bowel symptoms too (i.e. the legumes didn’t stay with me long). The same went for all legumes except green beans, which I can thankfully still eat.

I tried to stay a vegetarian for about two or three months after my diagnosis. I tried to live off of cheese and whey protein shakes, but still felt sick all of the time. My sinus problems continued that year, and once again I was on the antibiotic merry-go-round. Summer came and I took an internship back home with my family and with better access to hypoallergenic foods. Ultimately, I made the difficult decision to leave grad school for awhile to try to get healthier, to learn to live with my mold sensitivity, and perhaps most importantly to pay off the goddamn bills that piled up from doctor’s visits, prescriptions, and special food.

It turned out to be an incredibly good decision, but for some pretty painful reasons. I remained sick, and very sensitive to mold. I spent a few months living at home as I tried to get my finances in order, and then started looking for low-mold housing. Everything I saw was expensive, and it was further compounded when I didn’t get the job I wanted where I was working. I was unemployed for a couple weeks, and marginally employed for the next 4-6, which will beat the hell out of most people’s financial stability. I was then completely unable to find affordable housing and food to stay healthy, and had to continue rotating between my parents’ house, my partner’s house, and my friends’ houses. Then I burned my hand cooking and had to miss some work without pay, and also incurred some more significant medical bills. It would be nearly half a year into my new job before I could afford to search for a place to live.

Once I consistently had enough money for a deposit and first month’s rent, I started looking for apartments. One of the first I considered seemed perfect: it was with an old friend in a co-operative apartment complex. The place had been painted with asthma-safe low-VOC paint, and my friend had some breathing problems herself to look out for. I asked if she knew, offhand, of any hazards to asthmatics and she said she couldn’t think of any.

I moved in and immediately started getting sick. It was all of the same stuff I’d been through again. I was so crushed I couldn’t handle it at first, and took a couple weeks to see if I could stand it or find a way around it, but sure enough I couldn’t. The next place I tried was a cooperative living house, but it was also mold-infested. I tried a third place, all within a month, and that too fell through. I was causing a lot of trouble for friends who were looking for stable roommates, and I started to wonder if I was becoming just too much of a liability to get by. I wondered if I should consider doing something drastic like killing myself or working for a big evil pharmaceutical corporation that would pay me beaucoup bucks so that I could live somewhere really fancy and clean. I didn’t have to entertain either of those options, thankfully.

Once I got on my feet again, and after the financial devastation of multiple failed apartment hunts (and several months rent and deposits lost to places I never got to live in), I started the hunt again. I realized that I had to actually try sleeping in apartments to see if I could stand it there before moving in. While this is one of the most bizarre things you can ask people as a stranger and random potential roommate found on the internet, I found people to be incredibly supportive. Every person I asked accommodated this request. My life became like a massive experiment. I had to be very attentive to my symptoms, trying to feel if my ears popped when I entered a house, assessing the degree to which my sinuses felt stuffed after entering a room, taking my lung function measurements covertly in the bathrooms.

But still, I couldn’t find any place where I didn’t feel sick in the morning. I felt like I hit rock bottom and got really depressed. I felt so horrible and shitty every day that I didn’t really want to wake up or keep living. It’s incredibly hard to keep dragging yourself to work when you feel that bad, but I knew I had to. I had lots of responsibilities and worked in a competitive atmosphere, which I generally liked but which made sick times total hell. I felt like I could have found a place months sooner, if only I could have taken more time off to search for an apartment, but I felt like the search took up so much time that a day off here and there wouldn’t make such a difference anyway. Also, I wasn’t sure if I would get super sick again, and need to take my full vacation time in sick time someday, so I hoarded every vacation day. I spent most of my evenings and my weekends searching craigslist and meeting new places. I had to spend as much time as possible at every place, so I felt like I was always waiting to figure out if I would be ok.

In December, I finally found a place that was OK. It was a full 17 months after I left grad school, and 7 months into my full-time search. I felt a little sick when I got up in the morning, but felt sort of obligated to go ahead and take the place that was “good enough.” While the other roommates were around, I searched the attic, crawlspace, walls, and closets for signs of mold and found none, so I wasn’t sure what would be making me sick. It was a mysteriously new house in Old West Durham, and even though it made me a little sick, I figured it was better than nothing.

The first three months or so seemed shaky. The seventeen months of homelessness made me feel vulnerable and insecure everywhere, and I wasn’t apt to trust any house. I was still feeling stuffy and sick in the winter, so I was worried about what the summer would do to me.

Soon, though, the allergies became an afterthought. My digestive problems got incredibly bad, and I was suddenly feeling the sickest I’d felt in my life. Almost no food stayed with me. I reduced my food sources down to bread, cheese, tomatoes, and meat. I figured surely none of those could be the culprit, and so I had no idea what could be wrong with me. Months after reaching the mental rock bottom, I hit a medical rock bottom, and I decided it was time to call an acupuncturist. I had nothing left to lose.

I didn’t expect acupuncture and Chinese medicine to work, but these two systems ended up completely saving my life. As the child of Western medical professionals, and a hardcore believer in traditional western scientist, I was skeptical. I wanted to see medical studies in JAMA. Everything I read seemed tentative- like acupuncture “may” help allergies/asthma/arthritis/acid reflux/etc.

But I started going every three weeks, and sure enough I got better. My acupuncturist specializes in nutrition, which I thought wasn’t a problem for me. I felt like maybe they put me with the wrong person, since I was already on a hypoallergenic diet. The acupuncturist went through my diet and told me that all the milk and wheat were undoubtedly creating lots of phlegm and auto-immune reactions throughout my body, and urged me to quit them immediately. I was dubious, but willing to try anything. I gave up milk and wheat for two weeks, which was hell given all of my other allergies. The list of foods that were OK was incredibly short.

But then I got better. A LOT better. I could breathe easily for the first time in a long time. I wasn’t plagued by sinus headaches. And most importantly, my digestive problems stopped immediately. I went from being unable to eat in public to finally being in control of how my body responded to food. I regained the appetite I hadn’t even realized I’d lost. For the year or so beforehand I’d resorted to weighing my food so as to make sure I ate enough, since I had so little appetite on my own. My friends were stunned by the changes, since I went from pushing my food aside 1/3 of the way through a meal to chowing down like a starving person. Also, I could exercise without feeling totally destroyed. I went from suffering after 3 minutes on a treadmill and unable to get past 8 to running 36 with little trouble. I started training for a 5k (which I still haven’t run), and I could lift a lot more when I lifted weights. Perhaps the greatest achievement was the fact that I could now withstand normal amounts of household mold and allergens. While I’m still more sensitive than most, I can now live in my house and visit my friends without the fear of a life-threatening reaction.

All in all, I made an amazing recovery, and am in a good place for now. I wouldn’t say I’m cured, but I’m stable and better managed than I ever have been. It still takes a lot of work, from continued acupuncture and allergy shots to preparing almost all of my own food (it’s hard to find no legume, no dairy, no eggplant, no squash, no citrus, no pineapple, healthy low carb take-out), I still get knocked down harder than others when colds come to town, although my seasonal allergies are actually becoming less severe than those of my peers. Ultimately, I guess I now agree with the cheesy adage that “health is a journey of discovery,” and want to encourage everyone out there to find what it takes to make your life worth living. And I strongly encourage people to consider alternative remedies when traditional medicine fails you. I’m so grateful to have found a system of healing that understands what is wrong with me and offers solutions I can live with. I appreciate not having to get everything from pharmaceutical companies and not having to wrangle with insurance companies. While my insurance doesn’t cover acupuncture, I’m actually still paying much less to keep myself together than I have in many years.

It took me a long time to even acknowledge that I was sickly enough to tell people or to write things about it. In some ways, I still feel like it’s self-indulgent to be writing this when so many people are sicker. But then I think to all the times when I told healthy people about all the crap I’ve had to deal with, and the shocked looks on their faces. It was like I’d told them I was from Mars. To stay healthy, I’ve had to adopt a diet and lifestyle that’s vastly different from that of my radical friends but also that of my colleagues, parents, and other more “normal” people I know. The process of coming out as sickly has made it very clear that mine is not a normal life, but it has also taught me that being sickly can provide me with insights that others don’t have. Now that I’m “out” I’m free to turn my attention to what it means to be sickly, how sickness and politics intersect, and paths to wellness. I hope that someday it brings someone else peace of mind. It already has for me.

So that’s the way in which I’m sick. In future posts, I’ll deal more with how this interacted with social situations and radical politics, but I figured this was more than enough for one post!

intro to love/sickness

love/sickness is a blog for the chronically ill in radical communities, and also for less political sick people looking for revolutionary alternatives to their existing medical treatment. i've been through a lot of hell, but i've also learned a lot about how to take care of myself physically, mentally, and socially, and I wanted to create a space where both the negative and the positive can be shared.

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this blog was is born out of my personal experiences as a young lefty professional and a sufferer of multiple chronic illnesses. i'll get to which particular illnesses i've endured later, since it's not the specifics that i'm most interested in. if you just want a blog about the life of someone with elephantitis or recurrent bowel obstructions, i'm sure the internet can provide you with all the medical porn you want to sate your need for schadenfreude.

i am most concerned with the ways in which chronic illness and disability can be really life-altering, disrupting, lonely, and alienating in any setting, be it amongst gun-wielding christian republicans or punk rock musicians. i started out on one end of that spectrum (when i was like, 11; yes, i was in the NRA at 11) and i'm more at the other end now, but i'm hoping this blog will have helpful advice for those at both ends and all the way in between. at the same time, my specific situation has given me a lot to think about.

first, being young and sick is very difficult. most young people are healthy. profoundly healthy. so healthy it can be maddening that you're so unhealthy compared to them. especially if you have life-long illnesses, it can seem like you're stuck on a totally different, pathetic trajectory than everyone else around you. some people seem to think that youth can cure anything, and don't understand how you can't just use your youthful energy to shake off your condition. the "chronic" part can be hard for people to understand. as in yes, it really isn't going to go away, regardless of what i do, and even when i do feel "pretty good," it's never like when you feel "pretty good." it's hard to convince people that you're really, really not in control. we sit and watch as friends speed their way through degrees the conventional way, while we spend a summer (or year, or two, or a life) in bed. they don't know what it's like to spend months working just to pay for a night in the ER that was "covered" by insurance. basically, young people haven't been around as long, and they're the least likely to have personally gone through what you're going through. i've met incredibly few people my age who have been through some medical shit, and when i do meet them, it always feels good to know i'm not the only one.

i was "closeted" as a sick person for ten years, and only started telling people about my illnesses very recently. for a long time, i felt like people shouldn't be burdened by the depressing or stressful knowledge of what my everyday life was like. i also didn't want to feel like i was holding anyone back by "my personal medical issues." i didn't want to be the person with special needs at the restaurant, or who needed an extra stop on the road trip, or who couldn't come to the show because she had an asthma attack earlier in the day. i didn't want to admit that half the reason i carried a messenger bag was for storage of my pills, inhalers, epi pens, and water to take pills with at a moment's notice. rather than letting people know exactly why i wasn't at band practice, i'd provide no excuse at all or a lame excuse like those of my peers. yeah, i was totally still hungover at 6 pm!

i always found clandestine ways to take care of myself, and that seemed "good enough" for me. then i took new steps to managing my health, and i started to get better. for the first time in my life, i had days where i felt pretty healthy, and a lot more days where i felt at least kind of healthy. i was so excited that it was hard not to tell people, but that involved some degree of revealing what had been wrong with me all along. nothing could have prepared me for the reactions others had to these revelations; it just wasn't the support i'd imagined. sickly life is radically different from regular life, and so healthy people are always surprised to hear the kinds of things i dealt with on a daily basis. some of the reactions seemed really negative, but it was usually just shock. occasionally i deal with disbelief, but most experienced sickos can easily recount the kind of gruesome details that can convince any non-believer. like revealing any other very personal, painful thing about yourself, people who haven't been through it often don't know how to make sense of it, or what to say. my comparison standard had always been my own life (e.g. "am i sicker, or healthier, than i used to be?") so putting myself in comparison with those around me confirmed that it's a difficult, stressful, and sometimes depressing life to lead. sometimes it's good to have that affirmation, but often the reactions others have to my illness are worse than the illness itself.

i was particularly thrown off by the reactions from some of my radical friends. i've always felt at home with radicals and indeed feel out of place outside of the political community. health issues have been a prime concern of activists for a long time, so i expected people to be interested, engaged, understanding, and to have a radical interpretation of chronic illness. in reality, they were every bit as shocked, confused, and unable to comprehend what i'd told them as anyone else. their reactions were even more painful than that of others when it was combined with political judgment. for example, some vegans and militant vegetarians get on me for eating meat. well, i'm allergic to milk, soy, and a large handful of other things, and i live in the south. my options for what to eat that won't make me sick for two weeks are limited, and i have to eat whatever is left over. this usually involves meat for protein.

a lot of my friends are bicycle punks, and i find this to be one of the hardest issues to negotiate. there's only a few slivers of the year when i can bike, due to my asthma. i can't bike when it's cold, when it's hot, when i have seasonal allergies, when i'm sick, or when i've recently had an asthma attack. my food allergies trigger my asthma, so i can't bike if someone's accidentally sneaked milk into my diet in the last two weeks. milk is in many prepared foods, from sliced bread to granola bars to fry batter , so it's hard to avoid any exposure. i think of my car as my asthmatic-privelege (not to mention my class-privelege) mobile, but that's not good enough for some people. i've had to make some amazingly strong arguments for why i wasn't capable of biking somewhere on a given day, and it does get to a person over time.

i understand their reasons for being militant about the environmental politics behind not driving, but what about being advocates for people who are less abled than you are? in much the same way that we're described as a "post-feminist" society (in that women aren't really equal but they've made enough gains that people aren't as agitated) i feel like we're becoming a post-disability society. we've got some ADA protections for people with visible, obvious physical limitations. we care about people with some conditions. the government, your school, your workplace, and your friends will make accommodations for some things that could be wrong for you, but not necessarily what's actually wrong with you. a lot of young leftists want national healthcare, but don't fully understand the need firsthand. when you bring up problems, it seems like they should be on board, like "oh, i can't believe how hard it is for people with your condition to take care of themselves in this society." but often, the connection between your everyday life and their politics isn't made, and there can be a startling lack of empathy. not always, for sure, and i've met many people who have really gotten me (as best they can), and who have been very supportive, but there are times when you feel like your conditions make you less politically viable, rather than more.

the internal conflict of being radical and professional could be addressed on any number of blogs, but being sickly and professional is something that definitely needs more attention. on the one hand, you're more tethered to your job than other people, because you really need the health care. even if it's a job you love, that sense of necessity and obligation can get in the way of your enjoyment of your work. though it's not the case for me, many sickly people have to do jobs that totally suck just for the money and insurance. if you're a radical sickly person working hard for the money and the insurance, expect to have to defend these professional decisions constantly to those more free to pick their vocation. second, if you're sickly and a professional sometimes you feel like a liability. while other people my age take just as many days off nursing hangovers, break-ups, and twenty-something angst as i usually take off to care for my sub-par lungs, there can still be guilt about sick days, or off-days. in busy workplaces where there's always more to do than staff to do it, it can be hard to take the time you need off when you know there are things to be done. also, living with chronic illnesses is really stressful, and can distract from work even on good days. it can feel like life would be much easier without the problems, like work would be perfect if it wasn't for the feeling that your head or stomach was going to explode. work probably wouldn't be perfect anyway, but we'll never know!

so what's the takeaway from all of this? it sounds like a pretty crappy life, right? well, my surprising revelation is that "coming out" as a sick person has been incredibly rewarding. i would have never expected that, but it has been. the biggest reason is that i've become so much healthier since then. i think it's a mix of living in good faith (for lack of a better term), and also giving people the information they needed to accommodate me, when i really needed it. it's better to let people know that you're allergic to milk than to let it eat a hole in your intestines later and throw your sinuses off balance for weeks. also, it's allowed me to get closer to the few sickly friends i have. it's a really difficult life, for sure, but having these connections has been essential to my wellbeing. for every 9 people who are shocked or judgmental, i get someone who has been through some version of this, or who knows someone who has. and finally, by telling these stories, we're increasing people's knowledge of this major life struggle that's actually faced by a lot of people (and that most people will face, sooner or later). it seems almost laughable to think about it in a similar way as coming out as queer or a sexual assault survivor, but in many ways its analogous, and in some ways it is more difficult. there's not a lot of understanding right now, so in many ways we have to blaze this path.

you might ask where the "love" comes to play in all of this, since illness is obviously an odious, hate-worthy thing. to me, the love is part of coming to terms with one's disorders. it's about finding some way to get by and love yourself when others make you feel like you're inferior due to some physical dis-ability. it's about respecting what you've learned from your experience as a sickly person. you may not know this if you're able-bodied, but sickly people are often incredibly bad-ass. and finally, it's also about seeking the love you need and deserve as a sickly person, which can be hard to do, but is totally worth it.