Inconvenience Fee

I started the day today with a telemedicine appointment with a pulmonologist with the Post Covid Recovery Program at Rutgers. He prescribed a new inhaler that might improve my asthma symptoms. On the neurological stuff, he had no suggestions beyond what I am already taking.

Current research, he said, suggests it’s a mitochondrial disease: the body can take in oxygen, but doesn’t use it the way it’s supposed to. I’ve been following covid news, natch, and had seen a report about this, but he explained it helpfully.

He was a nice guy. He understood what I am experiencing, and what my job entails and why I can’t do it. He was kind. I wanted to cry, just from being seen. He couldn’t access a bunch of my medical record, because it’s in various different systems used by different doctors in different practices. “American exceptionalism,” he said, completely dead-pan.

He said most people with long covid get better after two and a half or three years.

TWO AND A HALF OR THREE YEARS.

It’s been eight months.

I went off to CVS and picked up the new inhaler.

I went to my GP’s office and dropped off a form for her to explain why I am unfit for jury duty. I had to print it out from the county website and fill out parts of it. Once she’s had time to fill it out, I have to go back to the office and pick it up. Then I have to mail it to the jury duty administrator. I am supposed to return it within five business days.

I went to the police station. Climbed down a double set of stairs, rang the bell, told them what I need, waited (standing) while they decided if they were going to let me in, pulled open a heavy door, wrote a check for four (4, FOUR!) dollars, and stood at the little window while the person on the other side processed the form, filed my check, filled out the temporary handicap parking tag, and punched out the month and year.

And climbed back up the double set of stairs and drove home, exhausted. 

Renewable online: driver’s license and car registration. But not the handicap hang tag. For today, I am done for.

I am on the couch with Stella, listening to music. Maybe I’ll read a little more of my current mystery novel. I’ve been binge reading Joyce Lionarons’s Matthew Cordwainer series,  and having finished, I started over at the beginning. 

I don’t usually nap, but it’s not impossible. Unlikely though, given the combination of rage, frustration, and fear that I live with all the time these days.

Oh, and on the “memo” line on the check, I wrote “inconvenience fee.”

Everything is Harder, the Tuesday Edition

Is it Tuesday? No, I think it’s Wednesday. But I haven’t gotten to the one thing I wanted to do yesterday, and I’m all out of energy again.

I think this scene in the saga starts on Sunday, when we got three inches of water in 20 minutes and spent then next hour running around trying to keep our garage from flooding. 

Is it Wednesday? Yes, it’s Wednesday. And I’m still tired.

This morning I sent a couple of emails to members of a couple of committees I’m on saying I’m probably going to have to resign, and do they want me to resign now or wait until the end of the cycle. Writing is easier than talking, but I’m still worn out by the time I find all the email addresses and send both messages. In addition to the cognitive issues, it’s emotionally hard to send these messages, because the committees do important work, and I want to be able to contribute.

Then I talk through the portal to the provider for one of my medications. Talking is hard to begin with, but talking with dropouts because the wifi signal is weak (my end or hers? I’ll never know) is even harder.

I look at social media. Why does that always turn out to be a mistake? Someone has posted an FYI: CVS has the new covid vax! I want it as soon as possible, because there is anecdotal evidence that getting revaccinated can help with long covid, and I don’t want to get covid again.

I call the local CVS. The recorded message says they have the vaccine in stock. I try to get through to a human, to see if this is really true, but fail, because that’s the way the world is designed right now, because why let a human do a job you can farm out to AI? Shitty AI, if you want my opinion.

I run off to CVS. They don’t have the vaccine. I tell them the recorded message says they do. They know. I try to explain that I don’t have energy to run around like this, because I have very little energy, and misinformation is actually harmful to me. Do they get it? I don’t know if they get it. Talking is hard. Talking when I am already tired.

Then I have to drive to the doctor’s office to pick up the papers for the disability application. At school, Catherine comes out to meet me at the car to take them to HR.

Home. Lunch. Crash.

Pacing and Recovery

You have to pace yourself, the doctors tell me, the occupational therapist tells me, the physical therapist tells me.

Learning to pace myself, it turns out, is a constantly evolving challenge.

I’ve started recovering physical strength, with the help of PT, and I’m able to handle daily life stuff withouth getting out of breath. Taking a shower, unloading the dishwasher, running a couple of loads of laundry. I can even manage some of the medical scheduling on my own — Catherine was doing all of this for me for a couple of months. 

I walk Stella. Or does Stella walk me? A month ago, we left the house and walked to the end of the block and back. Now we go around the neighborhood park, a little more than half a mile. We stop a lot so she can sniff things: she paces me.

Last week, I went for my first two bike rides since before COVID, and started lifting again, with the encouragement of the physical therapist. And with a long list of limits and precautions. I saw several deer and a couple of turtles in the park, and I worked up a couple sweats, and it felt great.

I also went to the Apple Store last week because my phone battery was draining itself, and two hours later, I was exhausted, and I’m still not exactly sure why. A combination, I think, of social interaction, overstimulation from all that was going on, and just not being able to rest when I started to flag.

It took me four days to recover.

I have so much trouble with words, mostly finding them, occasionally understanding them. Writing emails is a cognitive challenge. Working on revisions to that overdue book chapter that is is a much bigger challenge. I read a novel a few days ago for the first time since before Covid. I picked it because it was short. I took a lot of breaks.

After I hit “publish” on this post, I’ll go lie back down on the couch.

Yesterday, I went to the beach for the first time this summer. It, too, was exhausting, physically rather than cognitively. I swam only where there were almost no waves, and even that was challenging. Being in the water made it hard to breathe, something that’s never happened before. There was a lot of walking.

I am flattened today. Today, I struggle to go up and down the stairs to the basement. I napped this afternoon, something I haven’t needed to do for a few weeks. 

How long will it take to recover?

Drugs and Money (and the High Cost of Health Insurance)

My asthma medication retails for $400 a month. Thank god I have health insurance.

The medication contains two ingredients, developed in the 1990s and the 1970s, that if sold separately, would be long out of trademark and available for pennies a dose.

But big pharma is manipulating medication availability so that they can rake in big bucks by finding ways to create new combinations in new delivery hardware to keep medications under trademark for decades.

USAToday reported two years ago what the CEOs of some of the pharmaceutical companies were getting paid:

AstraZeneca, the manufacturer of the medication I take, isn’t on this list, but its CEO, Pascal Soriot, made $13.4 million in 2016.

I have no idea what my health insurance company is paying for the medication after my $25 copay, though I suspect they're negotiating some kind of discount. Health insurers' CEO salaries have spiked in recent years, and they too are pulling in millions of dollars:

Salaries in millions of dollars, 2016

There are a lot of reasons why health care costs in the United States are spiraling out of control. One of them is that big pharma and health insurance companies are tossing the ball back and forth in an orgy of greed, while passing on increasingly high prices to consumers in the form of higher policy costs, higher deductibles, and higher co-pays.

Making people ration health care because they can't afford it is terrible policy. It often leads to higher health care costs down the road. The only way to stop this is to take the profit motive out of the picture.

Capoeira and My New Shell

Freddy, a tortoise burned in a forest fire in Brazil, got a new shell by way of a 3D printer.

source: iflscience.com

I recently got a new name, "Tartaruga Marinha," "sea turtle," after two years of training at Capoeira Angola Quintal, and eight months after making a commitment to myself to take it seriously. Or as seriously as I could, given work and family obligations.

The story of Freddy and her new shell really resonates with me, because I feel as though Capoeira has given me, figuratively, a new carapace.

I came to Capoeira after a truck rear-ended my little car and left me with slipped disks in my neck and a shoulder that hurt all the time. My son had started training, and his teacher, Mestre Ombrinho, talked me into trying it, even though I doubted I could get very far.

My bad relationship with my own body reached much farther back than that car crash. As a little kid, I had exercise-induced asthma, but I didn't know that; all I knew was that when my sled reached the bottom of the snowy hill and I tried to run back up with the other kids, I'd be gasping and dragging, the last one up the hill every time. My only way to understand it was that I must be lazy or fat. Probably both.

I grew up and got medicated. For 29 years, I've taken twice-daily medication to keep my lungs clear, and a simple cold can send me into a spiral of breathing difficulties. I've had numerous asthma attacks severe enough to send me to the emergency room. I went backpacking and ran half marathons and a marathon and biked thousands of miles, between touring and commuting, and did a few triathlons, but still I considered my own body broken, traitorous, defeated. And then there were ten years of infertility, a whole other story but another experience that left me feeling alienated from and angry with my body.

When I started training, I'd watch the more experienced Capoeiristas and I'd constantly think, "I'll never be able to do that." I'd finish a class, and the next day my shoulder would hurt more, but then the day after that it would hurt less, and feel stronger and more flexible. So I kept going back.

As a child, I could do a cartwheel, but when I started doing Capoeira, I couldn't because of the weakness in my shoulder. But the instructors showed exercises that would build to an "Au," the Capoeira version of a cartwheel, and one day I found myself with my legs flying through the air.

Queda de rins is another signature Capoeira move that looks something like this:

source: Women in Capoeira

The goal is to balance on the arms, with both head and legs in the air. The first few hundred times I tried this, the pain and inflexibility and weakness in my shoulder left me nauseous with the effort. But recently, I managed to balance -- just briefly, but I managed it.

A few weeks ago, something strange shifted in my head. I watched one of the instructors demonstrate a move, and instead of rolling my eyes in frustration, I thought: "some day I'll be able to do that."

Recently, the instructor for the class I was in asked the students to try one-handed cartwheels. A couple of months ago, I'd have rolled my eyes and said, "No way." The other day, I tried it, managed a hop in the right direction, and laughed. Some day.

We're Not Finished Here

Seventeen years ago this week I had recently finished my PhD and had signed a contract to begin a job at a smallish private university in New Jersey. I went off to the International Dyke March in New York City. A photographer with a press pass pointed his huge lens in the direction of my friends and me, and I panicked.

My job talk had been a queer reading of Sir Gawain and the Green Knight, on the theory that if they didn't want to hire me after hearing it, then it wasn't the right institution for me.

Still, the university is in a pretty red county in a deep-purple state, and a careful academic analysis is different from photos with a bunch of women in various states of dress. Or not. I had met most of my future colleagues only at a long day of interviewing, and I had no idea how they might react if they saw that photo. And it was a tenure-track job. I didn't want to screw it up before I even arrived on campus. After I'd been on campus for a few months, the department rattlesnake let me know I wasn't the first choice candidate. Who knows?

The Supreme Court ruling making marriage equality the law of the land brings us a long way away from that day. It followed some smaller steps. Clinton's dictum of "don't ask, don't tell" for gays in the armed services now seems completely backward, as does Obama's slow movement toward gay rights.

But like the removal of the Confederate flag from many municipalities and state houses in recent days, marriage equality is a beginning, not an endpoint. Gays and lesbians can still be fired in many states. Churches are burning across the South, and people in power are silent.

We still have a lot of work to do. I don't want any gay or trans kid to fear coming out to her parents, or be shamed by his classmates, or get beaten up by acquaintances. I don't want any mother to have to fear for her sons. I want full inclusion for people who are disabled, who are trans, who have chronic illnesses. Not tolerance: acceptance and respect.

And I want us to quit using plastic and eating the animals.

Does that make me an outrageous idealist? Well then.

...Okay, A Half Marathon, Then

With excitement and trepidation, I signed up for a marathon back in January.

Three weeks ago, I re-injured my ITB, which I injured 20 years ago, after which I had to take several years off from running.  So maybe signing up for a marathon was a bit insane in the first place.

I took a couple of weeks off from running, did some biking and swimming and lifting to maintain fitness, and was ready to give it another try, and then came down with a cold. Unfortunately, I never just come down with a cold; I'm coughing up yellow goop and get out of breath climbing a flight of stairs.

And so with heavy heart but also some relief, I've changed my registration to the half marathon.  I'm already in shape to run it; I'll have five or six weeks after I'm over this chest infection to get myself back in shape, but hopefully keep the ITB loose and happy.

Those last couple of long runs were really, really painful; I think I took on too much, too soon. I'm looking forward to scaling back and training for a race I think I can complete comfortably. And maybe I can find another race in July.

Meanwhile, I'm still using the event to raise funds for Sustrans, a UK organization that raises awareness about sustainable public transportation while pushing for the development and maintenance of bike lanes. 

If you're so inclined, you can follow the link to a page where you can make a donation.

Meanwhile, I'm still amazed that I've been able to run as much as I have. It feels like a miracle that it's possible.  And the support of family and friends, in person and via social media, has been pretty amazing, and has gotten me through a lot of long runs so far. Thanks, y'all.

Things I Forgot About Long Runs

It's been around 20 years since I've been able to run long. Since then, I've done some very long bike rides and hiked the Hundred-Mile Wilderness and climbed Mt. Katahdin (around 115 miles total) in seven days. But since The Offspring came along eleven years ago, and I started being plagued by chronic health problems, I haven't done anything close to that strenuous.

In my training for the Milton Keynes Marathon, I'm only running twice a week in the hopes of staving off re-injury. I'm mixing it up with weights, bike rides, yoga, the occasional swim. But there are still the weekly long runs.

And there are things I'd forgotten.

The Hunger. Oh, the hunger. When I was training for the New York City marathon in 1991, I'd do a long run and then go out for brunch: pancakes, eggs, fruit, home fries, plate after plate of food. On backpacking trips, I always lose weight -- I just can't eat enough to keep up with the calorie needs.

I've gone vegan since then, so no more eggs and cheese, and packing in the calories can be a bit of a challenge. I'm also trying to stick to real food -- no goos or weird energy bars or sports drinks -- and I'm still working on finding easily digestible high-calorie gluten-free vegan foods for mid-run. And I'm open to suggestions!

The fatigue. I'm sleeping well. Very, very well.

Black toe nails. For me, it's always the second toe on the right foot. Switching to wool socks helped with shorter runs, but that nail will be long gone before I get to the marathon starting line. No, I'm not going to post a photo.

The pain. Was training this painful when I was a quarter century younger? Did the long runs hurt this much? It's not even the whole of the long runs; only the part where I run longer than the previous longest run, forcing myself to push through and just keep moving. If running hurt like this when I was in my 20s, I've completely forgotten.

Runner's high. The best part. I'd forgotten about the euphoria during long runs. Monday's run was 13.5 miles along the River Cam towpath -- sun, wind, clouds scudding across the fields; birds of many kinds and occasionally another runner. It was glorious.

I also forgot how good it feels the day after a long run, the pain gone and the stiffness receding. I forgot how awesome it feels to be in really great shape.

And when I was younger, I took running for granted. I didn't finish every long run feeling like it was a miracle I could even get out there. Now, I feel grateful during every run that I'm able to do it.

Fear of Side Effects / Call Me Superwoman

Theorists of disability have very rightly criticized the "medical model" suggesting individuals should be rehabilitated, normalized, fixed, in favor of a social model calling for modifications to the built environment that avoid putting, as Leviticus forbids, a stumbling block before the blind, or, for instance, stairs when a ramp or a sidewalk-level entrance would allow more equal access.

My experience of disability, however, involves interactions with the world that are hindered by exacerbations of chronic illness, typically asthma attacks triggered by upper-respiratory infections that for most of the people who catch them are at worst an annoyance, as well as by life-threatening allergies to things that other people aren't in the least bit bothered by. Or that they love, like mushrooms and cats.

Building streets with curb cuts and buildings with ramps as a matter of course is an obvious act of inclusion. Eliminating smoking in public areas to help everyone avoid upper airway disease is a no-brainer. But object when Edinburgh University gives a cat a library card or a cafe owner opens the premises to cats, and you might get death threats.

Actually, I'm not interested in challenging anyone's right to consort with cats, though if a friend has a cat, I can't visit, ever, and The Mate hasn't eaten mushrooms at home in years. I am trying to make the point that the idea that disability is a socially constructed phenomenon, rather than an individual problem subject to remediation, is problematic in my experience.

Chronic illness seems to depend upon a medical model. The wheelchair icon and the understanding of disability as constructed by exclusionary social practices both suggest that disability in individuals is stable. But chronic illness seems to be characterized by flux, whether progressive decline or alternating periods of illness and remission. Medical help, usually in the form of pharmaceuticals, can delay decline and treat attacks and exacerbations. Sometimes medicine is needed to keep a person alive long enough to recover and return to remission.

If there were a pill that made my allergy to cats go away? I'd take it in a minute.

Actually, there is such a pill: prednisone.

The problem with prednisone, as with many other medications people take for epilepsy, asthma, depression, crohn's disease, rheumatoid arthritis, and multiple sclerosis, to name just a few, is side effects.

Maybe a medication is extremely effective in treating a symptom, and the side effects are so minor, that it's not worth worrying about.

Maybe a medication works like that for most of the people who take it, but for a small minority, it turns out to have life-threatening effects.

Maybe it wasn't anticipated during trials that a lot of real-life people taking the drug under investigation would also be taking another medication at the same time, and the interaction between those two medications would turn out to be potentially lethal.

Maybe the test population didn't include any women, because women's hormonal cycles were long thought to screw up the results, and the drug turns out to be more effective in women. Or less effective.

Drug development and testing is done by people in lab coats, with careful measurements of doses, conditions, and outcomes. It sounds like science, it smells like science, it must be science. But real live people turn out to be so different in their responses to medications, including reduction of symptoms as well as side effects, that treating individuals turns out to be more art than science.

With some medications the line between effectiveness and toxicity is narrow. Or non-existent. If I took enough prednisone to eliminate my cat allergy I'd probably have a few great years. Manic years, since prednisone also is known to affect moods; it makes some people depressed and suicidal, but it makes me fly high as a kite. Kind of fun, and I tend to get a lot of work done, but not necessarily what I want when my body needs rest to recover from the infection that triggered the attack.

But then the side effects would almost certainly take over: weight gain, suppressed immunity, diabetes, hypertension, osteoporosis, psychosis, dementia.

Last week, I did a six-mile run and I lifted some weights, as well as other exercise. Monday morning, I woke up so sick I got winded brushing my teeth. I am the stumbling block, or in any rate my lungs are; there's no social reorganization that will change the fact that I need to breathe, or I'll be dead.

Even Harry Potter needed the occasional hit of oxygen during that underwater scene.

So I take just enough prednisone to control the symptoms. I watch as my cholesterol and A1C levels creep up, despite a vegan diet and lots of exercise. I need the medicine; I fear the side effects. As for the mania? I finished a book chapter, outlined another, and wrote two blog posts today.

Call me superwoman.

What Professors Do: Disability

Last week, this incredibly powerful essay crossed my radar: Katie Murphy writes about being a disabled student and having to ask all of her professors for accommodations during the first week of the semester.

It resonated with me in two important ways. One, I hate having to ask for accommodations, as a professional or as a human being.

Excuse me, your cigarette [that you're smoking under that no smoking sign] is triggering my asthma, would you mind putting it out? Usually, those requests get met with hostility from the smoker and silence from everyone else in the vicinity.

As a professor, I don't really get sick days. I'm expected to teach my classes. All of them. And if for some reason I can't make it to class, I'm expected to arrange for coverage.

This is one thing if I know I will be at a conference during a class meeting: I can plan an exercise that the students can do in class under the supervision of another faculty member. But if I get sick, I can't expect a colleague to be able to show up and teach what I was going to teach that day. Mostly because small departments depend upon having faculty in different fields to teach a wide range of courses, and much of the time, there's no one in my department who could just do what I do.

So I've made arrangements, after discussions with my department chair and the head of human resources, to teach on line at times when I can't breathe well enough to stand in front of students while talking for 75 minutes. Or three hours.  Or sit in front of them while managing a class.

These days, I get that sick once or twice a semester. The acute phase is usually over in three or four days, but it then takes three or four weeks to get back to full energy levels.

This means that my syllabus includes information to the effect that because of documented chronic illness, class may have to be moved on line at some point during the semester. And I'm told I have to point this out to my students on the first day of class in case someone should be uncomfortable with it and decide as a result to switch into a different section.

I hate having to do this.

I loathe having to paste this boilerplate into my syllabus every semester; I loathe having to ask my doctor each year for an updated letter confirming medical recommendation for the accommodation; I loathe having to hand it over to my department chair; and I really hate having to talk about it with my students.

In her blog post, Murphy does a truly great job of articulating the emotions that go along with this:

I have to engage in a little mental boxing match with self-doubt: “Do I really even need those accommodations? I could get by without them, right? I did before.” And guilt: “I’m wasting my professor’s time. They’re going to hate me. I’m such an inconvenience.” And shame: “A good student and a stronger person wouldn’t need all this stuff.

... Disabled people grow up learning to hate themselves, to hate their disability, because the world we live in hates disability for no logical reason. And sometimes the best way to fight that kind of illogic is with more illogic.

Self-doubt, guilt, shame, self-loathing. Check, check, check.

Except I fear that my supervisors AND my students are going to hate me, feel inconvenienced, suspect I might be malingering and really don't need these accommodations.

Murphy goes on to make a really excellent case for getting beyond those feelings. If you didn't already click through, go do it now, and read. You might even weep.

The second way that Murphy's essay resonated with me? I felt shame of a completely different kind. Shame that it never occurred to me that even though I know this burden, I have never seen it from a student's point of view. And so in my syllabus I have the standard boiler-plate about accommodations not being possible without documentation, see me in the first week of the semester, blah blah blah.

When I return from sabbatical and teach again, I will be removing that boilerplate, replacing it with something human, encouraging my colleagues to read Murphy's essay, and requesting that as a department we come up with better boilerplate.

And I will go on trying to conquer the self-loathing. That's harder, though.

I Got Tagged

... by my lovely cousin Amy, to take part in the ALS Ice-Bucket Challenge.

The Challenge has its detractors, some of whom think it's a stunt and others of whom worry that other organizations will see a drop in donations, but by and large I think it's a positive thing.

Nevertheless, I've decided to respond in my own way.  

Later today, I'm going to the pool, and I guess I'll go ahead and dump a bucket of ice water over my head, or let someone else do it.

I've also made a donation to the ALS Assocation.  And to the American Cancer Society, and to the Crohn's & Colitis Foundation of America.

ALS has, I supposed, touched my life; I once had a fitful, fearful, fretful night, after being told I needed to be tested for it, and then an hour or so on a gurney given electrical shocks to make sure all my nerves were working right. They were. Eventually, I was diagnosed with walking pneumonia, and thankfully, a week of antibiotics took care of it.

Cancer and Crohn's Disease have also touched my life. I have several family members who have lived with, or died from, either disease, and typing that sentence opens a hole in my heart. But those are not my stories to tell, so I'll leave it at that.

Finally, I've reached out to the local synagogue to ask about volunteer activities. I'm on sabbatical and this is a good opportunity to spend some time giving back. 

There are other organizations I could volunteer through, but volunteering as a Jew feels important and right at a time when antisemitism is on the rise again in Europe. Here in England, a store recently removed kosher goods (produced in Poland and the UK) from its shelves in response to "anti-Israel" protests: Judaism in general conflated with protests against Israeli actions in Gaza. And at a protest on the market square in Cambridge the other weekend, a man carried a sign reading "Israel = Nazis."

Made me sick.

And so I feel it's important to identify with Jews and Judaism in a public way.

Thank you, Amy, for tagging me, and thank you for getting me to think about these things, and getting me to make a commitment to volunteer work in the year to come.

A Different Kind of Awareness

May is Asthma Awareness Month, and the Centers for Disease Control wants you to know that "you can control your asthma."

The page acknowledges that "we don't know what causes asthma, and we don't know how to cure it." But if "you" are "living with" asthma, it's your responsibility to keep it under control.

There's more:

Although asthma cannot be cured, it is possible to manage asthma successfully to reduce and prevent asthma attacks, also called episodes. Successful asthma management includes knowing the warning signs of an attack, avoiding things that may trigger an attack, and following the advice of your healthcare provider.

This bothers me for so many reasons, I barely know where to start. 

An "episode" sounds like something you watch on tv.  An "attack" sounds significantly more sinister. 

The grammatical construction of "your asthma" suggests that the person owns the illness, but the construction of all the ideas on the page suggests that the asthma owns the person.

I might live with asthma, I might have asthma, but it's not "my" asthma. And I am not "my asthma."

"You," the person with asthma, are admonished to stay away from anything that "may trigger" an attack.

"May" (why not "will"?) suggests multiple possibilities, and by extension the impossibility of avoiding everything that could trigger, let's call it an "exacerbation," which directly contradicts the insistence that "you can control your asthma." If "we" don't know what causes asthma, how are "we" who "live with" the disease supposed to recognize and be able to avoid all, or any, possible triggers?

My list of triggers includes several foods and additives; airborne things like smoke, dust, mold, and chemicals; various animals; upper respiratory infections; and exercise.

Yes, exercise. I exercise anyway, because it helps to reduce the severity of the disease on a day-to-day level as well as during "attacks," but I have to be careful.

Most of the things that trigger my "episodes" are pretty common.  I don't know if it's usual for people to have such a long list, though.

I cringe when I hear someone sneezing or coughing near me. There are plenty of respectful smokers, but others stand right under the no-smoking sign and light up, or walk down the street waving a lit cigarette, and I don't always see them until after I've inhaled what they're trailing. Eating in restaurants is your basic crap-shoot.

The problem with the admonition to "avoid triggers" is that it lays all the responsibility on the indidivual rather than calling for the community to mitigate potential toxins as much as possible.

The claim that "you can control your asthma" is made twice, alongside the exhortation to "learn to control your asthma." Maybe it's meant to be encouraging: "you" don't need to live with symptoms. But it also implies that a person who has an attack is at fault for failing to avoid the triggers. If you "can" control your asthma, then if you have an "episode," it must be because "you" screwed up.

Reality: asthma is poorly understood; there is no cure; it can't always be effectively controlled. We live with it every day. And we go on living.

Disability Theory and Illness

I've been trying for some years to think about chronic illness through theories of disability, but it's a very problematic fit. I'm writing this post in the hopes that some of you my readers may point me to articles or books that might help me think this through... if they exist. And if I'm giving disability theory short shrift, I'd appreciate corrections as well.

-----

A core insight of disability theory, as I understand it, is to understand disability not in terms of physical impairment but rather as social construction. This means, for instance, that a person who uses a wheelchair is disabled by physical environments that require stairs for navigation, not by the condition of using the wheelchair in the first place.

To some extent, I can understand my own illness as constructed by social environments. When I was first looking for my first job after college as a newspaper reporter, I applied for a position where, I was told, the newsroom was a smoking area, and if I were to work there, I'd have to live with it. I couldn't pursue the job because I wouldn't have been able to breathe. So the changes to US law making most indoor places smoke-free have a significant structural effect, enabling me to work and eliminating impairment as the relevant conceptual framework.

A few years later I applied for another job where it turned out the employer, who worked from home as a literary agent, had a cat. Again, I had to turn down the job. Keeping cats as indoor pets is another socially constructed phenomenon, i.e., it's not "normal" or "natural" that people should do so, but culturally determined: cats were probably domesticated around 4000 years ago, probably by Egyptians. On the other hand, cats are, well, natural creatures. Mushrooms are also natural, as are forest fires, at least some of the time. One of my worst attacks occurred while packpacking several hundred miles downwind of a forest fire, another after eating mushrooms.

The other side of arguing for social construction as the site of disability is that it downplays the role of impairment.

It would be one thing to have to forego the occasional workout; anyone who's ever had a cold can probably imagine not wanting to go for a long run while seriously congested. But when breathing difficulties affect even talking and eating, then the notion of "impairment" becomes crucially important, and a focus on seeking out medical resources to mitigate impairment becomes a critical first step.

Disability theory helps me to formulate ideas about how our culture constructs the notion of "normal" and renders invisible people who don't fit that construction. It helps me to fight back against the idea that medical patients should be passive objects in the all-knowing medical enterprise. (Feminist approaches to women's health were, in fact, instrumental for me in coming to that perspective.) But it doesn't help me work through ideas about how impairment, and reliance on medical help in managing impairment, fit within disability theory.

Sometimes, Despair

Do I write a post about how hard it is, sometimes, to keep my chin up? About how aggravating it sometimes is, to have asthma that's triggered by upper respiratory infections and by multiple allergies, environmental as well as food, and is also around, year-round, as an underlying thing, and it's not always possible to "manage" and keep from flaring up, and sometimes I just get TIRED, from the medication side effects and the sleep loss and the on-going fatigue of having the disease in the first place, and of over-compensating all the time so people won't see me as being sick or sickly and writing me off? About how sometimes nevertheless I feel I am too sickly and I worry I'm just not doing my job effectively?

And above all else, how I curse the knowledge that I've passed the disease on to The Offspring and he will have to live with it his whole life, unless some day Medicine finds a cure?

But that all feels like whining, and complaining, and we in the kingdom of the sick are supposed to be above all grateful for all that the medical profession offers, not to complain about the side effects or the fact that only symptoms can be treated, because sometimes there's no cure, or when medical assistants treat you like meat (there aren't many of those, the vast majority of medical professionals at every level are compassionate and gentle, but the other few are oh so memorable), above all patient, patient with medications that don't work right, and patient with side effects, and patient when medications that do work well get taken off the market, whether because the drug companies can't make money on them or because the side effects turn out to be too dangerous, patient with the process, the endless rounds of doctors' appointments and medication refills and medical billing errors that will never end until I do.

And grateful for the opportunities Medicine affords to be ferried back, close, so tantalizingly close, to the kingdom of the healthy, sometimes even to travel within it and to pass as one who belongs, but never truly of it, because there's always the knowledge that one slip -- a label misread, a mistake by a waiter, a thoughtless smoker, an unanticipated cat, a virus making the rounds -- will eject me from the kingdom, propelling me forcefully back to the other shore.

Today, the kingdom of the sick is my sofa, surrounded by bottles of pills and glasses of water and medical paraphernalia and books and iPad and my phone. One of the pills will not let me sleep, and so all I can do is stay put, try to rest, try to let my body heal itself. I'm too fuzzy-headed to work, which is probably a blessing, because it means I can't try, but MUST rest.

And these are not first-world problems, exactly, but they are certainly problems shaped and formed by first-world privileges of various sorts, and even as I want to cry out with frustration and fatigue I remind myself of the vast network of privilege that has long kept me alive in these conditions, and still today keeps me relatively comfortable in the dealing with them. 

I write about life with chronic illness because I want to push back against those strong social currents that suggest that happiness is possible only for the healthy. ("Health isn't the most important thing, it's the only thing.") To push back against the not-so-subtle claim that we're in control, and if we fail at health, we're responsible and at fault. And I guess it's also important to acknowledge that it's not always possible to remain cheery. I have to admit to the despair that somtimes comes.

Breath; Metaphor

Inhale. Breathe in. Draw into the lungs, e.g. smoke. Eat rapidly, greedily.

Exhale. Breathe out. Give off gas or vapor.

Inspire. Breathe in. Motivate someone to do something creative or difficult or new. Make someone feel good about a task, a work of art.

Expire. Breathe out. Cease to be valid. Get too old to sell. Die.

Gasp, puff, pant, gulp, choke, rasp, croak.

Wheeze. Rattling breath. The sound of a spluttering engine. A trick, if you're in the UK.

Suffocate. Have difficulty breathing. Be prevented from expressing one's emotions or personality.

Air. What we breathe. A mood, a manner, a quality. A breeze. Let air into a room. Broadcast, express publicly.

A breath of fresh air.

On (Not) Logging Exercise

For years, decades, I kept lists and logs of the exercise I'd done each day: runs, bike rides, trips to the weight room, swims, hikes, in preparation for triathlons, running races, backpacking trips or biking vacations.

A few months ago, I quit.  Quit making notes and deleted all the records from my iPad.

Because for the past several years, this has been a cyclical record of getting sick, too sick to do any exercise, and then recovering slowly, and then working slowly back up to a moderate amount of exercise.

I came to the conclusion that keeping these records wasn't functioning as encouragement to get more exercise, but rather making me feel inadequate for not getting more exercise.  Kind of like keeping records of my periods during the long years of infertility wasn't doing anything to get me pregnant, but just making me attend to each failure to conceive, month after month, year after year.

I like exercise. I feel better if I'm active every day, and the more the better.  I work out to the extent I can, given a full-time job, a relatively high-needs child, and the sometimes disabling demands posed by living with chronic illness.

I don't think I'm getting any more or less exercise than I would be if I were still recording it all.  Yet not keeping these logs feels lighter.  The change feels incremental, and I suspect there's going to be additional evolution that goes with letting that go.  I'm curious about what it might be.

Small Commitment

A couple of months ago I decided to start doing yoga every day.  I needed some way to address the anxieties surrounding a car accident last year, a persistent asthma episode, and a bunch of other issues having to do with family members -- not my stories.

I've kept it up, even if it's just ten minutes before I collapse into bed at the end of a long day.  (Are there any other kind?)

I started off with the goal of doing a couple of sun salutations every day, and mostly I've kept that up, and I've also found myself drawn to forward bends and pigeon pose.

Neither of these is a difficult post -- no fabulous one-armed balances requiring great strength. But they're difficult for me because I'm not very flexible. I have to accept myself in the poses as I can do them -- just be, just let go.  Let go of the ideal form of the pose, let go of tension, let go of anxiety in the various places it takes hold in my body.

Some things have improved, others haven't.  My shoulder is a little better after a cortisone shot, and I'm remembering to breathe more while driving, instead of turning myself into a string of little knots.  I haven't recovered fully from the last asthma episode, though I'm certainly a lot better.  The unbloggables haven't changed much.

But my level of anxiety is down.  Perhaps I've just gotten used to a whole new level of stress, with that curious adaptability that we humans have.  Perhaps the yoga is doing something good.

There are days I'm tempted to skip it.  But I keep at it, because if I miss one day, it is likely to turn into a string of days.  Who knows what another few weeks or months might bring?

Part-Time? Intermittent? Interruptive?

I'm looking for a new word, because "chronic" doesn't fit my own embodiment of dis-ease.

The Oxford English Dictionary defines "chronic" thus: "Of diseases, etc.: Lasting a long time, long-continued, lingering, inveterate; opposed to acute."  Also: "continuous, constant."  The term fits the pain and stiffness in my shoulder, lingering from last year's incident when a runaway truck collided with my car.  The pain isn't particularly severe, and it's sometimes worse than other times, but it's always there, and fairly predictable: If I use the arm, the pain will be worse.  If I carry a backpack, or lift weights, or go swimming, it will aggravate it.  At the end of the day, when I try to get to sleep, I notice it.  It's always there.

The asthma, on the other hand, comes and goes, in intense and unexpected shifts and reversals.

Oh, the disease is always there, and I take medication twice a day to keep it under control, and there are things that will pretty predictably set off a reaction: inhaling smoke, eating mushrooms, drinking wine are all guaranteed troublemakers; getting a cold or flu sometimes sets off worse symptoms, but sometimes doesn't.

I decide what I eat and drink, though reading ingredient labels is a constant hassle and trying to eat in restaurants can be vexing.  Inadvertently breathing smoke from a fireplace, a cigarette, a can of sterno, a gas heater, or an idling truck is a lot more difficult to control.

Sometimes, one of these triggers -- or a combination -- will set off a mild reaction from which I recover in a few hours.  Other times, an attack might be so severe I'll find myself winded from loading the dishwasher or taking a shower; climbing stairs becomes a project.  It might take a week to recover, or six weeks, or three months.  That, too, is unpredictable.

The Oxford Thesaurus: American Edition suggests, among others, irregular, discontinuous, sporadic, spasmodic, random, fitful, and broken as synonyms for "intermittent."  What I want is a word that means both "random" and "spasmodic."  I also want some sense of the body being attacked rather than attacking itself: the triggers are environmental even though the bodily response is auto-immune.

What think you, sisters and brothers in the land of disorders that buck and hassle and kick on some days, and subside in meek docility in others?  How do we name our embodiment?

Who Knows?

Chronic illness is assumed to be predictable.  If you, the patient, follow the advice of the medical professionals, take your medicines, eat well, get your exercise, avoid triggers, then you will effectively "manage" your condition.

Uh-huh.

I used to think of myself as a Runner.  I'd pore over race schedules  and the calendar and plan out running routes for weeks, even months, in anticipation of a big race.  Now I think  of myself as someone who gets to run, sometimes.  This week, I can't run.  I may be able to run next week, probably the week after that ... but who  knows?

Here's the earliest definition of "patient" in the Oxford English Dictionary: "Enduring  pain,  affliction, inconvenience, etc., calmly, without discontent or complaint; characterized by or showing such endurance." The use of the word to refer to a person with an illness appears about the same time: the very definition of "patient" is intertwined with the notion that one will suffer, but should do so in silence.

I come down with a cold or I come into contact with an allergen, and who knows?  My body might shrug it off, or it might go into dragon-slayer mode, my lungs retracting and twisting into inutility.  One day, I ride a bike or climb a mountain; the next day, climbing a flight of stairs may be beyond me.  I have not gotten accustomed to the suddenness of the shifts, though the extent of the changes surprises me less than it once did.

During episodes, there's fear.  How long will it take to recover?  Will this episode leave me more impaired than before?  Between episodes, there's fear.  What will trigger the next?  When might it come?  Will I become unavailable to family, lose time at work, miss out on vacation activities?  Managing the stress becomes a constant part of "managing" the illness.

Chronic Instability

Is it really true that the night is darkest just before the dawn? Or is that just a metaphor about emotional processes? It's definitely pretty dark out there, though there's a riot of birds chirping; clearly, they know light is going to return soon.

I've been awake for the past four hours, alternately tossing and turning, getting work done, panicking about how little sleep I've had, and fretting about the inconsistency of my own body's responses to medication.

Last week, I got a cold.  Sometimes, I get a cold, I keep biking and running and going to the gym all through it, and it goes away.  Other times, it takes hold of my chest and ties a rope around it and makes it difficult to get breath in, get breath out.

At which point, I get a prescription for predisone, a kind of steroid that doesn't give you big muscles or superhuman sports ability.  It's just supposed to make me breathe.  But the effects of the prednisone aren't consistent, either.  It usually makes me pretty high, but if it's working well, I get a lot done during the day and I don't get quite enough sleep and I recover and move on.

This time, though, it's knocking my sleeping schedule to hell.  I think maybe I got five hours once night this week.  Tonight (last night? do I admit to it being over, or do I still think I'm going to try again to court Morpheus?) I've had three.  I don't function well on less than six or seven even when I'm not sick, and trying to let my body rest and recover when I feel like I've had a few gallons of coffee is impossible.  I'm trying hard not to get cranky with my family and colleagues; getting weepy in the car is fine, but not getting sleepy.

The pharmaceutical model is that if a medication worked well in enough of a test population to get approved, then it's assumed that it will work that way, consistently, in all of the bodies for which it's subsequently prescribed.  That's what the marketing will tell you.  The reality is, medications work differently in different bodies, and sometimes they work differently in the same body at different times.

Inspire: to influence, motivate, animate.  Expire: to die.  Breathe in, breathe out, breathe in, breathe out.

I've been re-reading Simi Linton's Claiming Disability, and I don't want to disagree with any of the important points made by the volume, in particular the key point that people with disabilities must control the discourse.  But somehow the book does not speak to my own embodiment of dis-ease.

It might be because, while Linton is very careful to avoid identifying disability in general with any one physical or mental condition, she does discuss the visibility of disability as a crucial component in its construction, though she acknowledges, in a discussion of "passing" as non-disabled, that disability is not always visible.

My dis-ease is invisible.  I "pass" unless I make a distinct effort to inform the world that my body works differently.  Those around me would be aware that I'm having difficulty breathing only if I tell them: there's no visible marker.  For me, "claiming disability" requires making an assertion about something that no one else can see.  It's subject, then, to belief -- or to disbelief.  "My smoking won't hurt you." "It's all in your head."  "Just take the stairs."  It's not a matter of passing as disabled, it's a matter of having to assert a disabled status when everyone else can "see" a person without markers of physical difference and therefore a person who must not be disabled.  Plus, no one likes a whiner.

And here's the dawn.  The taxicabs and the buses and the trains over the Williamsburg Bridge will soon drown out the chatter of birdsong.  And  I'll give up on ontology for another day, and perhaps try again to sleep.