You thought I was going to forget, didn’t you?

Buddy has taken a liking to a shoe box I threw on the floor one day while digging through my closet. He really, really doesn’t fit. It’s buckling out at the sides and from the top, it looks square — despite being a normally-constructed oblong shoe box. But this is my 14lb kitty who’s actually too thin for his skeletal frame, so he fills it out pretty well.

I think he looks like a bit of a cat-box-boat. Sailing the linty red seas.

Around the corner, about a quarter mile down the street, there is a small plot of land across from the rows of public housing, next to the community center. It was just untended grass until several months ago, in the springtime, when small squares were outlined with wooden planks, and the ground inside filled with soil. Then the shed was built, and the fence was put up.

Welcome to the neighborhood garden.

Community gardens are a great way to make use of space — to grow your own vegetables, herbs and so forth — to feed your family, save some money — and to develop a connection with the lad you live on — to have a hand in creation, nature, sustenance.

I was across from the fields, growing up, but in a different way. Most of my elementary classmates were children of undocumented field workers. The food that makes it onto your plate by way of your local supermarket has a good chance of being tended and harvested by these families.

They were not picking grapes and lemons and walnuts for pleasure, for self-realization. They were not feeding their families with this food. Their work was for the rest of the world.

They were connected with the earth, for sure. But it was not quite the same connection as that developed by participants in community gardens.

Many of these gardens serve underprivileged, disadvantaged communities — as this one — who are struggling to keep their families well fed and provided for. But it strikes me every time I sit to think about it: these two different ways of relating to nature are both borne of hardship, of poverty. They are connections forged by the reality of subsistence. They operate in different ways, with different results, but they grow from the same root.

I smile whenever I pass this garden. It is thriving, providing nutrition for poor families and a bright site of beauty in the middle of a run-down area.

But I wonder whether we could ever come up with a more holistic way of dealing with these issues. One which does not leave some families chained to the earth in the reality of capitalistic agriculture, and others disconnected from it in the reality of modernity and urbanism.

Today’s roundup brought to you by oh look a feather toy!

Seventeen pills of six different sorts, my 24-hour drug regimen.

I take six medications. Five of them — the antiepileptic, the antidepressant, the non-narcotic pain killer, the muscle relaxer, and the oral contraceptive — are covered through a mail-order service. I receive a 90-day supply in my mail box every three months. No hassle. If a prescription runs out, my doctor is notified electronically, he then sends the new script electronically, and everything proceeds as normal with absolutely no additional step required of me. The only thing I do is click on the check-out button on the web site every three months. That’s it. No calling. No physical piece of paper to pick up. No wait at a retail pharmacy. Just a click and several days’ wait.

There’s one other medication I take. That medication serves the exact same purpose as all five others: it relieves my pain so that I can get on with my daily functions. I take it regularly, just like all five others. I have been taking it regularly for over five years now for the same reason. But this medication is not covered by the mail order service, because it is not considered a “maintenance medication” — despite that it fills the exact same maintenance role all five others fill, just by a different mechanism.

So for this medication, I am only allowed a 30-day supply at a time, and no refills — a brand new script each fill, which requires my doctor’s input each time. I have to call my doctor no sooner than the exact day it was filled last month, unless it falls on a weekend in which case I might get away with calling up to 2 days early. Then I have to call back a couple days later to see if the script has been written. If it has, it is printed out, and I have to physically walk in to the office, stand in line to see a receptionist, have them take a copy of the script with my photo ID, sign and date the copy, and walk out with the script. Then I have to physically take it into a retail pharmacy, wait in line, hand it to the pharmacy technician, then wait the required time for it to be filled. If there are no problems with my insurance, I then must physically present myself and pay for the prescription. Then I can walk out the door with my medication.

(And this is the process with a doctor who’s relatively friendly about the matter.)

It is quite a different process and one overflowing with “veto points” — points at which any party involved can cause any sort of problem and stop the whole process up. Maybe my doctor is on vacation and won’t be back for two weeks. He is the only one in my clinic who will write this script. I can’t call earlier in anticipation of his absence; they will not write the script before the last runs out. In that case, I’m stuck until he comes back. Maybe the system spits out some sort of error, like the one I received today: I was told the script must be written by my original prescriber. Which is this doctor. So now they have to go back and ask for the script all over again, and he isn’t in til tomorrow, and it’s not guaranteed to go through smoothly then. There have been other errors.

Maybe the insurance says no. For any number of reasons; I’ve dealt with prior authorization errors, quantity limit errors, errors because my insurance has suddenly decided to list me as living in an assisted-living home and cannot fill a prescription if I am. Maybe the pharmacy hits a snag, like the time they would not fill a written prescription until 2 a.m. that night because the insurance company said so, even if we paid out of pocket without billing the insurance.

And I’m going to keep running into these issues, and I will run into new errors every few months. I may have solved the last problem, but there’s always something new to pop up. I can never rely on this medication being filled on-time. It simply does not happen the majority of the time. No matter how diligent I am, how patient I am, how clearly and politely I explain myself — or how despondent I get, how emotional I get when telling them but I cannot work without this medication, and I don’t have leave on this job, and I can’t afford to be fired for missing work. Or whatever other pickle I’m in at the moment. It doesn’t matter. I do everything right and there will still be regular problems in getting my medication filled on time.

I’m sure, by now, you’ve figured out that this particular medication is a narcotic pain killer — hydrocodone (generic for Vicodin). I take it for chronic pain. I have been taking it for over five years this way, with the doses varying between one-and-a-half per day and three per day. And the only medical trouble I have ever had on it is when there was an excessive delay in refill during a bad pain flare and I got to go through the withdrawal for two weeks. (And I can tell you from experience: hydrocodone withdrawal is nothing compared to Effexor withdrawal.)

Narcotic pain killers can be a valid option for chronic pain patients. They fill a void left by other treatments which still aren’t effective enough to address our symptoms, which can easily be disabling. As you can see, I take plenty of other medications. But if I want to be able to get up and do something, I still need the pain relief the hydrocodone provides. So I take it. Because I like to be able to get up and do things. Like make the bed in the morning and feed the cats and make myself lunch and possibly run errands. Or — you know — work. Those silly sorts of things.

Here’s the thing, though. In both common culture and the medical industry, chronic pain patients who take these medications to be able to perform everyday, ordinary tasks that currently-able people take for granted — like bathing or showering or washing dishes or dropping their kids off at school — are still constructed as an addict just looking to get high.

You could almost kind of expect that for the narcotics. Most people do not understand the distinction between addiction and dependence. (Which is, basically, the distinction between taking a medication for a medical purpose so that you can go on living your everyday life, vs. taking a medication when you have no medical need so that you can escape from your everyday life.) This distinction exists for a reason; developing a tolerance for a medication is not a bad thing in and of itself, and must be weighed against the benefits that medications brings to the person.

Addiction calls to mind, though, a life being torn down. Addiction calls to mind a person who is seeing the detriment of a drug outweighing the benefit. A person whose life is falling apart because of the drug.

A chronic pain patient taking a narcotic pain killer under the close supervision and guidance of a knowledgeable doctor is exactly the opposite: sie is a person whose life is coming back together because of the drug.

But this image is not easily shaken in people’s minds. And so the chronic pain patient is reimagined as the addict. Hir behaviors are twisted to fit the common conception of the addict. If sie ever lets out a drop of disappointment at having problems with accessing this medication which is helping to put hir life back together — that is seen as drug-seeking behavior. And if sie lets out any sort of relief at the feeling sie experiences after taking the pill and having the crushing weight lifted from hir muscles — that is seen as “getting a high.” Heaven forbid sie show any emotion beyond just relief — like perhaps pleasure or happiness — at being able to perform everyday functions again. And any moodiness or other undesirable behavior can be easily attributed to hir “addiction.”

What’s strange, I notice, is that this reimagining is applied not only to chronic pain patients who take narcotics — but to any chronic pain patients who takes any pain relieving drug.

Take, for example, the anti-epileptic I take. It is not a narcotic. It cannot be abused — that is, if you do not have a neurological pain disorder, it will not do anything for you. You can’t use it to get high, get low, or get anything — except a couple hundred dollars poorer every month.

The only way this pill does anything for you is if you have some sort of nerve problem. And even then, the effect isn’t a “high.” Rather, it levels your pain threshhold — brings it closer to “normal.” No artificial mood effects, no giddiness, no lift. Just level.

And I still see this medication treated very similarly. Patients who take it are described in the same terms you would describe a drug addict.

And it’s just one of many. Any drug that relieves pain for a person with chronic pain will be painted in the same strokes.

At issue, here, is the conventional wisdom that our pain is imagined, that it has no real basis, or even then that it isn’t as bad as we make it out to be. That is the belief that feeds this twisted construction.

Because if you are imagining your pain, there is nothing legitimate you could be getting out of that drug. And if you aren’t getting anything legitimate out of it, but you’re still taking it — and getting upset when you don’t have it — well, that’s classic addict behavior, isn’t it?

If our pain were recognized as real and legitimate — if those messed-up-in-so-many-ways Lyrica commercials didn’t start out with “My fibromyalgia pain is real!” — this wouldn’t happen as much. Because if our pain is real and legitimate, then it is real and legitimate to seek relief for it.

(Of course, that assumes that pharmaceuticals are accepted as a real and legitimate way to relieve that pain.)

But people are going to have trouble with that. They don’t want to accept our pain. They don’t want to admit that it is real. They want to keep believing that it must be imagined. Because then, they can comfort themselves, in that murky area beneath our conscious thought, that they would never end up in our situation. They could never end up with any sort of medical condition. And if they did, well, they know how to do everything right, so they would never be affected by it.

This is why they scoff at our assertions that our experiences are real. This is why our conditions are jokes to a great many people. This is why “fibromyalgia is bullshit” has been the leading search term to my blog. This is why they seek so desperately to deny that these drugs — any drug — could be having a legitimate effect on us. This is why they treat us like addicts. Because they can see how we might reasonably be having real pain, and they can see how these drugs might reasonably be legitimately relieving it, and they can see how we might reasonably be upset if we are consistently denied access to the one thing that allows us to live our lives the way we want to.

And if all that is reasonable, then — shit — they could wind up in the same place someday. And none of their can-do bootstrap individual determination could magically get them out of it.

Addicts we are, then.

Perhaps this is the wrong question. Instead, I propose: What is there to heal?

Healing is the process of a body, having been injured in some way, doing what it takes to restore itself to normalcy. Merriam-Webster says, specifically, “to make sound or whole” and “to restore to original purity or integrity.”

Take note of the words I have highlighted. What are they saying?

This cultural idea of healing, applied to a person’s spirit rather than body, draws upon the idea of an abnormal body being made “normal.” It assumes that any person not normal should be made normal.

But there are all sorts of bodies in this world. Bodies with broken bones, broken skin, disfigured limbs, faces, with cuts and gashes and wounds, missing limbs, missing organs, organs which work in abnormal ways — according to our cultural norms.

And, much the same, there are all sorts of people in this world. People who have survived assault and abuse, been subject to violence, faced trauma, been manipulated or neglected, dealt with addictions, lost loved ones. People who have experienced any number of things which cause them significant distress.

These people are expected to “heal” from their experience. They go through a modest amount of time processing the event emotionally and then return to normal.

But why should they be made normal?

Why should any broken person be pushed and pressured into a form which does not fit?

Why is it that a person who is anything other than normal is therefore less than whole?

Why can’t a person simply be who they are, even if they are injured or broken or disfigured, and still be considered a whole person?

Any person who has faced trauma will need to find ways to process their trauma, ways to cope, ways to live with what has changed in their life. But that person should not have to push hirself to go back to how things once were — or to make things resemble what they are for a person who has not faced that trauma. Things may be different. There is not only one way to live a life. There are many. And perhaps you will settle into a different one — one which works better for who you are now — which may not have worked for who you were before. And that way is no less right.

What do you do when life changes? You adapt. You make things fit you. You don’t make you fit everything else.

It’s ok to be broken. Being broken does not make you less than whole. It makes you different. And that’s ok.

related posts: You don’t have to be normal,Untitled.

This post was written several months ago, inspired by but not necessarily in direct response to this post at The Curvature. I went to bed after writing it, intending to post in the morning, and forgot, until I found it in my draft folder just now. Scatterbrained would be the kind way to describe me.

This post is in two parts, the same story, told with different but parallel focus.

***

Once my endometriosis was diagnosed, my gynecologist said that my best choice for treatment was an injection called Lupron Depot.

Because the endometriosis small and diffuse, surgery was not an option — there were no large masses that could simply be cut out — rather, it was more like a thin layer covering everything in spots.

Lupron is a gonadotropin-releasing hormone antagonist; it is used for a variety of things including chemical castration of male sex offenders. In women with certain reproductive conditions, it works by stopping the production of the hormone estrogen in the body. Estrogen is what tells the endometrium to grow, and therefore what inflames the endometrial implants outside the uterus. Therefore, by stopping the production of estrogen for a set time — six months; twelve if the first six were unsuccessful — you would hope to shrink the implants that are already there. Essentially, what you are doing is inducing a six-month menopause.

Lupron is not aspirin. It is not a trivial drug. It makes serious changes to your body. Most women do not finish the full six months. I did, and the nurses were genuinely impressed when I came in for my last shot. None of their patients had ever taken a full round before.

And if the pain comes back immediately after stopping — which, in me, it did — they want you to go a second six-month round. (That is the limit due to risk of developing osteoporosis.)

Honestly — I kind of want to know the women who actually made it through twelve months of that drug, if my nurses had never seen anyone make it the first six.

It was not a fun six months. At all. (This is how it felt in real time.) I earned six months without any periods (I would have gone through one or two in that time on my birth control, so it wasn’t a huge benefit) and a couple months’ reprieve from the pain. In exchange, I went through numerous side effects, from the awful spasms, dizziness, fainting and tremors to considerable hair loss to hot flashes and uncontrollable sweating to sudden overwhelming nausea to weight gain.

And now, ten months after stopping the treatment? I wish I’d never done it.

I didn’t start birth control until age 19. Until that time, I was letting my body go through its natural cycle. Which must have been brimming with estrogen, because the pain was bad. It kept me out of school at least 1-2 days a month for period pain alone (before we even consider my fibromyalgia). It is by far the worst pain I have ever experienced — even with the awful migraines I get where, literally, a twitch (anywhere) causes so much pain throughout the body that I want to scream, but the movement and force required to make any sound at all would hurt just as much — so I stay stiff and silent and suffer until there’s enough of a window to down some pain meds.

The cramps I get on my “natural” (no hormonal medications) period — the pain comes in waves, crashing over me, exploding through every ligament and nerve in my body, rolling up and down the length of my torso. I spent many days in the fetal position on the floor of the bathroom, wishing I could just cease to exist right then and there, in too much pain for the thoughts to ever get as far as “movement to make it happen.”

And, well, suffice to say it affected the bathroom cycle too. I’ll leave it at that.

The pain, even in between cramps, is bad enough that I could not sit upright for more than maybe an hour’s total time throughout the entire first day — I was either in bed, on the couch, on the floor, or lying down in a chair in front of the computer. And the rest of the week, it was difficult to stand upright and walk — I needed to reach out a lot for balance; I couldn’t straighten my back it hurt too bad. There was this intense heavy pain in the muscles of my upper legs. And I needed heat — bad — any cold or dampness felt like my blood was turning to acid and eating me inside out. I reveled in the sun; I couldn’t leave the house without heating pads; I sat down under the hot hot water in the shower. Wintertime (which, in central California, got as low as the 40s during the day, but was damp and moist with fog) was excruciating.

I went through all of this approximately one week (or a little more) out of every month in my adolescent life. And this is all ignoring the actual period.

When I got on birth control — after a brief period on a tricyclic medication (Ortho Tri-Cyclin Lo), which made me break out in painful cystic acne and left me irritable enough that a fly could be cause for an angry breakdown — things settled down somewhat — especially after a kind gynecologist prescribed a low-dose monocyclic pill (Mircette) continuously; that is, skip the placebo week in the pack, taking four packs in a row before allowing that period week. That meant one period every three months, and a lightened period at that — it was still very painful, but not suicidal-thought-inducing painful like it was “naturally.” And during the twelve weeks on the hormones, I was mostly free of the continual lower abdomen/pelvic area pain that I suffered even between periods on my “natural” cycle.

I stayed like this until the beginning of last year, when the lower back/pelvic pain set in to stay, leading to the diagnosis of endometriosis and the Lupron treatment.

And after the Lupron, now — back on that same low-dose pill, taken continuously — I am going through pain that is far closer to my “natural” cycle pain than to the pain I went through for the three years prior to the Lupron. I am having cramps that sometimes keep me from being able to move to get out of bed in the morning and sometimes hurt so bad I have to get up because it hurts too much lying down. The back pain continues; my methods of treatment are definitely helping considerably, but the pain is more persistent and more severe than it was last year. My, um, “bathroom cycle” — which was relieved of pain completely during the three pre-Lupron birth control years — has returned to the cycle I had before I ever started hormone treatment. The only thing that hasn’t returned is that lead-like pain in my leg muscles, that acid-blood feeling.

And it is frustrating me. I wish I had never started the Lupron in the first place. I read up on it before agreeing to take it, and I knew there were a lot of horror stories and a lot of women really, really hated it. But what other treatment did I have? this seemed like something that — even if it was difficult during — would make a difference in the long run. So I did it, and I stuck it out, because how would I know what good it could do if I quit?

I don’t know if maybe it’s because I spent that six months estrogen-free, and now I am on a pill which, though low-dose, does contain estrogen — so suddenly my body is feeling an increase in estrogen, thereby causing more inflammation and therefore more pain. I have no idea; I do my research but I am still a layperson. But there can be no argument that my situation is considerably worse than it was before I went through the Lupron. And it’s been this way for ten months. This is no mere readjustment.

***

Next post: on the visible physical changes, body-image adjustment and dysmorphia.

I’ve officially been writing here for two full years as of today!

I’ve met a lot of really cool people, I’ve learned a lot of really important stuff, and I hope I’ve made some small difference in some small way, somewhere.

You guys have kept me going. I wouldn’t still be here without feedback, without someone telling me that what I said made some difference to them. I am steadily finding my own voice in writing, sharpening the mind (allow me to stop for a laugh – ha! – ok) deepening my understanding of these issues.

Two years ago, I didn’t identify as “disabled” myself. I was interested in feminism, but I had little concept of the weaknesses the in mainstream feminist movement, particularly around race, trans issues, and (though it’s seemingly never identified so outrightly) class. The more I’ve explored, the more I’ve learned.

And the more I’ve vocalized my thoughts, my experiences, the more I’ve learned about myself; the more I’ve been able to figure out who I am, what I care about, what my strengths are and what I need to work on.

The people who have taken the time to read my comments and posts, to respond, to support and to challenge — you folks are so important. Movement building is a community effort; it takes all of our individual voices to form a strong collective force. Even when you feel small and isolated, you are still a part of the whole, an important part.

I want to encourage anyone who feels small and unsteady to raise your voice, to speak out, to detail your experiences, how they affect your views, how you think we can make this world better. Our personal stories are far more powerful than many let on. We, the small people, connect with each other, commiserate, deliberate, and decide on ideas and priorities that trickle up, over time, to the top reaches of the power structure. It does happen. We make it happen.

I love hearing from all of you. And I hope you will speak out more — in comments here and elsewhere — or in your own space — and develop your own voice. You might feel small and unimportant, but you might be surprised, when you tap into that voice, and feed it, and shape it — how strong it is.

And you might — like me — be surprised, when you use it, to find people who normally keep quiet will speak up.

Your individual experiences may not be representative of the mainstream. That is all the more reason to speak about them. Because there are others, like you, who would be strengthened to see their experiences represented somewhere.

And the entire community will be strengthened when it can recognize the range and diversity of experiences within it.

Thank you for everything you have contributed here. And I hope I’ll see you around.

Apologies for RSS readers; I forgot to cross-post this when posted at Feministe! Getting it posted so I can move on to new posts.

***

We had a really good discussion about nondisability. It got derailed, a bit, because it depended on our ability to reasonably define disability. And it’s a subject that has come up in every discussion we’ve had these couple weeks. What is it?

I advocate an intentionally overbroad definition of disability. And I definitely see a tendency, with certain medical conditions, not to identify — on that inner level, what “feels right” — as disabled.

I support every person’s right to self-determination, to define their own experiences, and to identify however feels most right for them. I do not want to try to pressure people into identifying in a way they do not feel comfortable. But I do think that part of this tendency, this reticence, is rooted in a sort of ableism. Not ableism as in “internalized negative feelings about PWD” — but ableism as in “a certain understanding of how the world works and how society is/should be structured” … or, you might say, a certain model.

I want to explore a few things — explore our assumptions behind the word “disabled.”

[I am having with the WordPress backend and cannot paste the full post here. Once I get WP upgraded I'll put the post here as well. Visit Feministe to see the post for now.]

The Chicago Reporter did an investigation revealing poorer ratings for majority-black homes in Illinois than majority-white homes:

An investigation by The Chicago Reporter found that Illinois is arguably the worst state in the nation for Black senior citizens seeking quality nursing home care. There is just one home in Illinois rated “excellent” by the federal government when more than 50 percent of the home’s residents are Black. In Illinois, these facilities get the worst federal ratings and on average have more violations than facilities where a majority of residents are white. And in Chicago, on average, these homes have more medical malpractice and personal injury lawsuits. People in white homes got better care than those in Black homes, even if both were poor.

The Reporter also found that the staff at Illinois’ black nursing homes spent less time daily with residents than staff at facilities where a majority of the residents are white. Of that time, Black residents got a smaller percentage of time with more-skilled registered nurses than facilities where the residents were white [...]

The Reporter analyzed the records of 15,724 nursing homes listed in the federal Nursing Home Compare ranking database to determine if disparities existed in the quality of care. The overall rating is based on a combination of health inspection results, staffing levels and how well each home performs on 10 important aspects of care, like how well residents maintain their ability to dress themselves and eat. The database includes homes that get some of their money from Medicaid or Medicare, more than 95 percent of all nursing homes.

The Reporter found that in Chicago, the worst rating—a one on a five-point scale—was given to 57 percent of Black nursing homes, compared with 11 percent of white nursing homes.

Excellent ratings were given to no black homes in Chicago and 29 percent of all homes with majority-white residents. White seniors had qualitatively better nursing home options than Black seniors—in some cases, even when facilities had the same owner [...]

The Reporter analyzed the ratings for Chicago homes where more than 75 percent of residents’ care was paid for by Medicaid. A quarter of white homes received an excellent rating, compared with none of the black homes. More than half of the Black homes received the worst rating, while 8 percent of white homes earned the same score [...]

“That’s blatant racism,” [state Rep. LaShawn Ford] said. “A lot of the times the owners of these nursing homes treat them [just] as a business. It has to be more of a mission than a business.”

It should be surprising, but it’s not. In just about any way you can identify, it appears that black people are receiving worse care than white people. We can talk about the causes — the value society has placed on particular qualities in a person, the significantly worse performance of for-profit homes — in this case, it even appears that the systemic effect of poverty (which black people suffer under disproportionately) made no difference; poor black people still received worse care than poor white people.

We can talk about support for independent living for people with disabilities, but that is a point where poverty — especially poverty extending deep into a person’s family, rather than individual poverty — would come into play and negatively affect people of color disproportionately.

Research has also shown that black patients receive worse medical care than white patients (this article focuses on diabetes care in particular; I am fairly sure I have seen research that demonstrated similar disparities in hospital care).

This is white privilege: even when you are aging and/or disabled, with all the trouble society gives you, your racial background is still giving you a hand up over those who do not share your privilege.

Thanks to Anna for the link.

(Cross-posted at Feministe.)