Jess Banks schools you.

This belly is fat, and it’s mine. I own it. I earned it.

And I hate it.

I feel it around me like sandbags as I walk and sit and lie down. It oozes over my waistband. It forms doughy rolls inside my shirt. It pushes clumps of flesh into folds on my back. It rubs my skin against itself until constellations of tiny skintags form in protest. I look at tintype photos of the distortion of bone and organ caused by Victorian corseting, and I calculate how breathless I could stand to be to force that belly out of sight.

This belly comes from my ancestors. I was never cuddled by skinny, bony mothers or grandmothers. All my people are soft and jolly and restful to exhausted children at the end of a day’s play. That gentle flesh came from Ireland’s oatmeal and Poland’s potatoes. It weathered diet candy chews and scales and low-fat, no-fat endurance tests—this softness is stronger than them all.

My mother never said a kind word about her body in my entire life. When I admired her beauty-queen crown, she told me how her thick ankles almost cost her the prize. When I asked her how she danced to the music she taught me to love, she whispered how a ‘60s shimmy with her young, large, innocent breasts got her kicked out of the YMCA dance. When I told her I thought she was the best secretary in the world, she bemoaned her broad hips and butt, shaped by years of day-in day-out office chairs and Diet Coke.

I was barely five when people started exclaiming how much I looked like my mother. Now when I look in the mirror, I see her body, the one she taught me to despise. And I do.

This belly comes from my survival. I wasn’t small as I grew into adulthood—5’10” by the time I graduated from high school, size 12 in my wedding dress at 21—but I wasn’t terribly big either. The first semester of grad school gave me crushing tension headaches; doctors prescribed an antidepressant that was supposed to help. It helped more than I knew, masking symptoms of oncoming fibromyalgia until the day the medication suddenly, mysteriously stopped working. By that time, I was 75 pounds heavier. The male doctor who prescribed it didn’t think to mention that severe weight gain was common.

Fibro triggered depression; physical and mental anguish became hopelessly tangled. The medication that kept me afloat, active, alive layered fat over my bones. The harder I have tried to be well and happy, the heavier I have grown. I’m told that exercise and getting outdoors more would help my mood, but this belly keeps me from venturing out as much as my pain does. The irony is not lost on me that the medication I take to be happier in my mind makes me unhappier about my body.

This belly comes from my children. One of my midwives told me that babies are very efficient parasites, in and ex utero. She meant to comfort me when I was in month 4 of throwing my guts up 20 hours a day, 7 days a week. I remembered it when my second pregnancy had me sick 24 hours a day for seven and a half months, when I was in the ER for fluids when I couldn’t even keep down water. I only had six weeks to balance a pint of Ben and Jerry’s on the top of my belly, between my breasts, and feel like a proper mother-to-be. I don’t have any of those sideways pregnancy pictures–they didn’t look different enough from my non-pregnancy pictures to be worth taking.

Because I was always tall and heavy, I never had a baby belly that could stop traffic as I crossed the street. Nobody inappropriately rubbed my stomach and asked questions, because none of them could be sure it was pregnancy that stretched my shirts tight. I felt like I needed to be working off my baby weight while I was still pregnant because obesity was on every list of risk factors I was given. And if I couldn’t lose weight when I was throwing up non-stop, losing that baby weight after the boys arrived seemed beyond hopeless.

And my belly comes from food, of course. Bread and tortilla and baguette and pita and bagels. Soup and stew and stroganoff, shawarma and spanakopita. Cheeses: Comté, Cheddar, Delice d’Affinois, Chèvre, Port Salut, Gouda, Midnight Moon, curds so fresh they squeak in my teeth. Pasta, pesto, palak paneer, pho. Dumplings of every gods-given nation on this planet. I adore the craft and kindness of food, its intimate introduction to every kind of culture, the warmest embrace of caretakers everywhere. If I could trade my belly for the world of delicious flavors and spices and surprises, I doubt I’d take the deal.

So this is my belly, and all the things that made it. It’s where I feel things first–anxiety, relief, fear, welling joy. It presses against snuggling children and beloved friends when they accept my preferred forms of greeting and delight. It catches splashes from the pots and pans where I stir up nourishment and comfort for anyone I feed. It hikes up the back of my shirts when I bend down to garden, giving me unexpected sunburns. It rules out pretty dresses and fashionable clothing. It makes me keep the lights off if I want to feel sexy, even alone.

It’s not going anywhere, if I’m going to be honest. I want to believe people who say I’m beautiful like I am. But I don’t know that I’ll ever make peace with this belly. Like so many things about myself, I can’t love it. But it’s undeniably me.

A lot of the social justice work I do is about making spaces–everything from housing to the whole of Minnesota–more welcoming to people whom society often forces out. Sometimes, that’s practical stuff, like urging schools or cities or events to offer gender-neutral bathrooms where trans*/gender non-conforming folks can feel safe. And sometimes, it’s more abstract, like working against police profiling and brutality toward people of color in their own homes and neighborhoods.

The basis of that work is education and empathy. I read, I listen, I ask questions, so when I walk into a new space, I see the ways that place values and welcomes all different kinds of people and their needs. And I also see the ways those spaces exclude and isolate people, which makes a good starting place for effecting change.

So I’ve attended community meetings, planning sessions, trainings, and seminars. I regularly participate in protests, which might include rallies, marches, and sit-, stand-, or die-ins. And the saying in the groups where I organize is that, “If it’s worth doing, it’s worth debriefing,” so I’m learning how to observe what does and doesn’t work well, and share constructive feedback.

But it’s possible for a space that’s been engineered with great intention to include a typically excluded group to unintentionally exclude a different group. Some feminists say they don’t feel safe from patriarchy and misogyny if trans* women are included in the space (I happen to think they’re wrong, for the record). Often, queer people of color feel uncomfortable in the largely white LGBTQ activist movement. Class barriers manifest often in community meetings, where those with more income and education assert themselves as more worth listening to than their less privileged neighbors. We all need to do better, even if we think we’re doing the right thing just by showing up.

As I see intersectionality championed in the powerful, new spaces we’re constructing, though, we’re missing the mark on disability. I’m physically and neurologically disabled, thanks to the Wonder Twins, fibromyalgia and autism. I’m not the most restricted person at a gathering, but I do face barriers that others don’t. I’m also used to being in the company of someone with more intense disabilities, though, so I’m attuned to obstacles so I can help them negotiate our environment.

And the new movements need to do more. I’ve had to choose which breakout session to attend based on which didn’t require me to climb a flight of stairs. I’ve had to leave valuable trainings early because the bright lights and unchecked noise level wore me out. I’ve also sat through meetings which taught me nothing because I couldn’t hear or see the speakers. And I’ve both hurt myself trying to keep up, or just fallen out completely, with marches that followed a route and went at a pace that left all but the able-bodied behind.

And I’m full-sighted. I’m not in a chair. My lungs and heart are strong. I have 40 years of coping skills to manage sensory input. I hear exceptionally well. If I can’t keep up, who else is bejng left behind? And what knowledge and wisdom are we losing when they’re abandoned?

I have a lot of thoughts about accommodations and modifications to make the spaces where real, radical, revolutionary change is happening accessible to all disabled people. I’ll probably break them into separate posts.

But I’m asking each of you who reads this to spend a bit of time thinking and examining your surroundings with renewed curiosity. Think of the physical gestures that literally embody the movement: raised fist, raised hands, bodies marching and lying down. Imagine that you can’t make those gestures in solidarity. Think of the speaker whose voice and insights you most want to hear in the world. Imagine the flight of stairs that keeps you from getting to see them. Imagine seeing that person but not knowing what they’re saying.

How welcome would you feel? How valued? How powerful?

If the answer is “not very,” well, the revolution’s got to change.

Every body I inhabit is a dissenting body.

Anxiety, anger, and disorientation emanate from my autistic sensory body. I can’t stop listening to other people’s noise through the walls, and each heavy footfall above me bruises my eardrums. A puff of my husband’s breath on my face is enough to wake me from a sound sleep. I adjust the blinds, the lights, the brightness of my screen in constant rotation. I seek refuge under the comforting weight of white noise and thick blankets, even when my heart longs for other people and open air.

My physical body protests in a language of chronic pain and sleeplessness. These disruptions occur arbitrarily; actions which give me joy now may trigger furious flares an hour, a day, a week later. And if physical penalties for disobeying my body’s limitations weren’t enough, it also inflicts its dissent on my psychological self by failing to administer the correct neurological chemicals to avoid the fogged-in abyss of depression. Sadness begets sleeplessness begets pain begets sadness, and so forth.

I often find my body unacceptable, and so does society. Every narrow seat, every cutting waistband, every judgmental voice tells me I don’t fit expectations. I brush, I tweeze, I shave, I wax, I drape, I shift, I cut, I hide. My shape is segregated into shrinking fabrics and diminishing retail spaces. It is targeted with advertisements and poisons. On the days when my body prevents me from doing meaningful work or feeling lovable, I am crushed under relentless waves of warfare.

And even if my body could fit into the definitions of worth, its very identity—as a woman, as a bisexual, as a disabled person—is constantly erased for others’ convenience. The conditions of my existence are subject to legitimized dismissal by the medical establishment, the justice system, the corporate structure that wants to suppress and exterminate that which cannot turn a profit. Reproductive control and healthcare are privileges I can check out with my skin color, only to be recalled by my economic status. If I wear my gender too openly, I’m asking for sexual assault. If I conceal my gender too well, I risk violent words and acts by those threatened by challenges to an artificial binary.

So because all my bodies are cause for dissent, I use my body as an instrument of dissent. I’m learning to seek pleasure, and to wear my rolls and creases, flagrantly and without apology. I’m walking into the halls of power to demand care for my body and others like it, through access to healthcare, economic security, an end to rape culture, and equal rights for LGBT and disabled people. I’m raising my voice in rhetorical flourishes and strident shouts to demand an end to systems of racist, sexist, and classist oppression, fueled by corporate and military powers seeking to buy or win what I am entitled to as a citizen and human being.

As long as I have a dissenting body to my name, I will use it to obstruct that which oppresses it.

Last March, I stopped sleeping. I’m no stranger to insomnia, so at first I just thought I was launching into another warped cycle. I stocked up the Netflix queue and resolved to wait it out.

But it didn’t resolve. No matter how tired I got–well past the point in any normal round of sleeplessness where sheer exhaustion would keep me down all night–I woke up between 1:30 and 3:00am, and couldn’t fall asleep again until the alarm was about to go off to wake the kids for school. I couldn’t figure it out. I cut caffeine after 6pm, I stopped napping (no matter how much I needed the extra spoons that helped me steal back), I adjusted my night-time meds up a notch.

Nothing. 3am and wide awake.

And then I remembered: Exactly that time, one year earlier, I lay awake to listen for Connor’s footsteps on the kitchen floor, going for a knife to kill himself. I never heard those footsteps last March, thank the gods, and there was no such fear this March. But my body knew that anniversary better than I did, and it sent a clear message–“It’s March, and you need to keep your boy safe. You can sleep when the sun is up.”

We all have smells, sounds, textures, even lighting that bring us directly back to very specific times and places. The silky binding on a baby blanket. The smell of the cleaning fluid from that time in the hospital. The unreasonably comforting taste of Kraft Singles melted on Wonder bread. The suffocating weight of a body, even though it’s not the body, pressing down on yours. When I asked about how their bodies store memories, friends mentioned more of these than I could keep up with. There’s no doubt that sensory triggers own the key to our memory, whether we like it or not.

Those experiences don’t surprise me anymore, except sometimes in the strength and speed that they fold time neatly in half, delivering us back to a precise moment in the past. What does surprise me is how well my body remembers past events that my conscious memory has long packed away in mothballs.

This March wasn’t the first time I’ve felt the gravity of memory. For almost a decade, I’d get depressed and irritable in May, around the time of year I was sexually assaulted. And a year after my deepest dive into suicidal depression, I was so anxious and high-strung, I was absolutely intolerable with trying to make everything better than the previous August. Neither of these is surprising–many people who go through trauma of some kind experience difficulty with anniversaries of those occurrences, well beyond just realizing that significant time has passed even as it felt like the hours and days were barely creeping along since incomprehensible loss.

There are other things that can trigger buried experiences. I worked with a physical therapist who practiced myofascial release. Fascia is the connective tissue that links our musculoskeletal system; it covers every single muscle, fiber, and organ in our bodies. When our bodies sustain stress and trauma, it stretches and tightens this connective web, causing pain. And therapists practicing this technique help people unwind and loosen the places where the fascia is bunched up and causing problems.

My therapist warned me when we started that unwinding damage sometimes causes memories to rewind in equally powerful ways. He said my body remembered things I hadn’t thought about in years, maybe even things that precede what I consciously knew. He advised me to have some time free after each appointment, in case I needed time to recover emotionally. And he was so right. We unwound injuries and threats as old as I was: fear and bracing against an unpredictable alcoholic father, a rib-breaking high-speed run-in with a vaulting horse, and the car accident that most likely triggered whatever latent potential for fibromyalgia rested in my body. I cried at almost every session, and only once was it from physical pain.

Now, so soon after helping my friend through the first steps away from sexual trauma, I find that my pain levels are sky-high. I’m not eating much. Honestly, I’m drinking more, though still never to drunkenness. I feel ill at ease in my body, and I find myself devoutly wishing to change its landscape, whether with wax (don’t ask) or tattoo ink, or cloak it in clothes that aren’t heavy with past wearings.

I can’t afford any of that, though. So I just sit here, with this body that remembers too much.

A week or so ago, I had a Brilliant Plan (TM). We’re making arrangements to take the whole family, our two sons included, to Origins this year. I’m beyond excited, but there’s a lot of apprehension there too. It’ll be the boys’ first con, and the first one I’ve been able to attend in several years.

It’ll also be the first con I’ve attended since I’ve known about my autism, and I expect that to be a revelation on a number of different fronts. I’ll be more attentive to the waves of sensory info coming in, and more patient with my preoccupation with the textures and graphic design of the costumes and games I see. I’ll understand why the exhibit hall and the crowded hallways between events take such a toll on my patience and energy. I’ll be more aware of how my autism affects my user experience of new systems and products. And I’ll be more mindful of how the chaos of the con environment uses up my available energy, focus, and physical reserves.

In the past, if I needed a sensory break from the crowds and chaos of large gaming rooms and the overwhelming stimuli of the exhibit hall, I had to schlep all the way back to my hotel room. Once there, the odds of actually returning diminish rapidly. When I finally stop moving so much, the tidal wave of pain and sensation I’ve been holding at bay swamps me, and I realize how much I’m hurting and tired. I can’t even think of going back to the convention center until I’ve had significant rest after that. It hurts to miss valuable time with friends I don’t see the rest of the year, but it hurts more to keep moving, to keep fighting my environment.

This year, I’m trying to do something about this. I’ve submitted proposals to both Origins and Gen Con–the two conventions I’m planning to attend this year–to establish a Sensory Break Room for people who are physically or mentally challenged by the rigorous environment of the con.

Part of this is wholly selfish. I don’t want to have to leave the convention center when (not if) my son needs a sensory break. I don’t want to have to go all the way back to our hotel room, where I know I’ll have fights over whether and when we go back, and why we don’t just stay and play XBox or something just between ourselves. He’ll be anxious and overwhelmed, literally by the amount of fun and multitude of choices available. And I don’t want to fight about whether we spend time at the place we came to spend time at.

The other part is more generous. If people like my son and I could really benefit from a room near the center of action where we can decompress for a few minutes, thereby gaining a few hours more of “on” time, I know we’re not the only ones who could use it. As people become more aware of neurodiversity, true introversion, and other conditions that make con activities challenging, it seems like the next logical step for adaptive services is to offer a nearby room where folks can go to recharge their batteries. Much as there are now nursing rooms available for moms who take their babies to cons, I think sensory break rooms are the future of necessary accessibility options for con attendees.

But what do I mean by a “sensory break room”? Let me do the negative definition before the positive one. It won’t be a hangout for people who just need a seat. It won’t be a quiet place to play quiet games. It won’t be a craft room for game widow(er)s looking for company. It won’t be a nursing or babysitting room.

The room will be screened off, instead of requiring users to open and close a clanky door. The lights will be kept quite low, probably too low to read properly, but there may be some soft, shifting colored lights to focus on. No music or other noise will be permitted, but a small fan or ionizer will run to provide white noise as an auditory buffer. Nobody will bug anyone else, but neither is it a nap room. If someone falls asleep, the monitor will wake them up after five or ten minutes, and each user will be responsible if they accidentally sleep through an event they’re supposed to attend. I’m hoping that the folks most likely to use it will be generous in bringing some adaptive tools to share–weighted blankets, exercise balls, fidgets, and other comforting objects. 

There won’t be a cost to use this space–I would no sooner charge for access to a wheelchair ramp than I would for access to this room–and its primary function will be as a room to decompress. Even just 15 minutes for most people gets them back another 2 to 3 hours of time to participate in con activities. The importance of this downtime cannot be overstated for making it a successful event for a significant number of people.

I’ve had a very good response from folks on Twitter, Facebook, and Google+, and I’m hoping that enough positive pressure on the Origins and Gen Con organizers can help us achieve a pilot test for this resource. I’m trying to figure out whether it’s possible to get enough con-goers to volunteer for a shift monitoring the room while it’s open (probably 10am-6pm Thursday thru Saturday), or whether I should see if I can get the local Autism Societies to get a few folks who would be willing to work a two-hour shift each day in exchange for a four-day badge. Either way, I’m also trying to pull together some of the best game designers/GMs in the industry to run “reward games” for the folks who put in the time to make this resource work well.

Think about that look–you know the one–when you see someone about ready to meltdown in the middle of the dealer hall, or at a game table in a deafening room of other game tables. No, grownups don’t throw temper tantrums the way kids do, but you can see the tightening in their shoulders, their jaws. Their eyes get wide, flash around to scan the room for exits and clocks to tell when they get to escape. They get snippy, impatient, or they shut down entirely: “My character just goes along with everybody else.”

There’s a way to avoid that happening quite so often. A room to decompress in, to take that break from the light and noise and sights and crowds, can stave off those sudden attacks. There are still kinks and details in the plan to work out, but I hope it sounds like a good idea to enough people that we can start to leverage some positive pressure on the con organizers. Whether or not you’re going, please communicate to Origins and Gen Con organizers that you think that this resource is valuable and worth accommodating in the outskirts of the main convention area.

Sometimes you have to break to get put back together. This year, we can provide a safe space for our fellow gamers to do that.

Normally, I’d be writing a Friday Night Lists posts today, but something so extraordinary happened yesterday that I feel compelled to write about that instead. It’s a series of events that has restored a tiny bit of my faith in responsive government, and will have an effect on literally tens of thousands of people who will never know I had a role in it.

A few months ago, I saw an email from TakeAction Minnesota calling for folks to tell their stories about the importance of MinnesotaCare, the low-cost state health insurance option that covers people with incomes between 75 to 250% of Federal Poverty Level, depending on family status. I wrote in with my own story about the failure of care for my fibromyalgia and subsequent suicidal depression that occurred when we first moved to Minnesota two years ago, and how well MinnesotaCare has kept me healthy since it kicked in that fall.

I got a call from one of the healthcare staffers at TakeAction this spring. In the time that had passed, we’d dealt with Connor’s own crisis, and MinnesotaCare was (and is) critical in the solutions that saved his life. They asked if I’d be willing to testify to these things as the government worked to figure out what to do with MinnesotaCare, once (hopefully) the Affordable Care Act kicks in in 2014. Some officials wanted to ensure that eligible communities would move into a Basic Health Plan that’s basically the same, while more conservative influences have been pushing hard to force participants to buy their own private plans on the Insurance Exchanges that will be set up under ACA. Of course, I said yes.

This Thursday, I attended a meeting of the Access government workgroup grappling with these issues. It’s a panel of officials from relevant government bureaus, the Minnesota Legislature, and agencies like Legal Aid and major labor and insurance groups. Here’s what I told them:

“My name is Jessica Banks. My husband, my two young sons, and I are currently enrolled in Minnesota Care. I have experienced life with and without this important program. I am here to tell you today that, without access to Minnesota Care, my health and my life spiraled out of control. I am also here to tell you that our Minnesota Care coverage saved my son’s life.

When we moved to Minnesota from Wisconsin two years ago, we needed to transition our coverage from Badger Care to Minnesota Care. We qualify for state coverage because we make $34,000 a year for a family of four, putting us below the 200% Federal Poverty Level. Neither of our jobs provides health care coverage, and we are unable to afford a private plan. Unfortunately, our transition required a four-month waiting period during which I became very ill.

I have lived with fibromyalgia for the past 13 years. With medication, I can keep it fairly stable. When we moved, I had enough medicine to get me through a few weeks. I had made an appointment with a doctor when I arrived. I planned on paying out of pocket for the visit. That doctor was unwilling to continue my established care and, without insurance, I couldn’t afford to make additional doctors’ visits. Buying the medication without insurance would have cost over $1000 a month. I tried to find low cost alternatives, but I wasn’t successful.

I tapered myself off my meds, trying to make them last as long as I could. It wasn’t enough; I ended up going off all the meds completely. My pain levels spiked. I was couch and bed bound. It was so bad that I couldn’t take care of my kids. As my pain levels rose, a deep depression set in. I ended up in the ER with severe depression and pain. In the hospital, the doctors regulated my drugs and found generic alternatives that I could afford. I received help for the depression, and I began to return to my normal life. Then, our Minnesota Care coverage kicked in and I was able to fully recover.

In February, my nine-year-old son Connor, who has Asperger’s Syndrome, went through a suicidal crisis. Autistics like him find rapid, unpredictable change overwhelming. His baseline of everyday highs and lows crashed and became erratic. Minor problems seemed insurmountable, and we had difficulty protecting him from his wild swings of emotion at home and at school. He hurt himself on several occasions, and he couldn’t see any way out of his sensory and emotional torture.

Our Minnesota Care plan completely covered his evaluation and a partial hospitalization program that quickly and effectively reversed his attempts to kill himself, and changed all of our lives for the better. Because of Minnesota Care, we were able to help him heal, and to recover as a family. He finished the school year back with his friends and teachers at Chelsea Heights. On this Tuesday, we celebrated his 10^th birthday, a milestone I honestly doubted we would achieve at times this spring.

I am incredibly grateful for Minnesota Care. I shudder at the thought of what the outcome would have been if we didn’t have access to Connor’s treatment. I am here to ask you to ensure that Minnesota Care families continue to have access to affordable health coverage through an option very similar to Minnesota Care, called the Basic Health Plan. A comprehensive benefit package, including full mental health benefits and affordable prescriptions, is also important to my family’s continued wellbeing.

Without Minnesota Care, my health insurance premiums would increase by over 50 to 70 percent if we had to buy coverage on the Exchange, instead of having Minnesota Care. Without Minnesota Care, Minnesota families like mine, who are already vulnerable, would be exposed to unbearable stresses and burdens. My son and my family were saved by Minnesota Care–please don’t take it away.”

I’d practiced my comments several times, so I thought I had it cold, but when I described Connor’s difficulties, I got choked up. I recovered without messing up my mascara, but I could hear sniffles both in the audience and on the panel. When I told them about celebrating Connor’s birthday, I flipped up the picture frame I’d brought with me to the table and showed them this picture. The sniffles turned into tears.

I had to leave for work shortly after I testified, but the ladies from TakeAction who’d helped me figure out the specifics of my comments and supported me with their presence there that day were very complimentary. A few people thanked me for my courage, which surprised me. What I’d done hadn’t taken any particular courage on my part–I don’t have a filter, so I’ll tell anybody anything. (Exhibit A: This whole damn blog.)

That evening, I got an email from TakeAction, containing a forwarded message from the chairwoman of the committee for me and another woman who testified. She wrote this:

“And then when people spoke, they were eloquent and compelling.  They did a fabulous job.  Unfortunately, I was not able to thank any of them personally or tell them how great they did.  They left before the meeting finished.  As a result they may not have realized how important they were to today’s outcome.  In agreeing today that the benefit package for the138-200% population should be at least equal to the current MNCare benefit package (and agreeing that we should continue to explore what other benefits should be added [Model Mental Health Benefits were added today]), several task force members referenced things that were said by the people who spoke today.  Their statements were also critically important in the task force deciding to recommend that people should pay no premium up to 150% FPG and reduced premiums for people between 150 and 200%

If you have the opportunity, please convey my thanks to everyone who came today and my deep appreciation to those who shared their stories.  Please assure them that they influenced the outcome.”

Another panel member emailed me directly to thank me for my testimony, and said that recently it seemed that the panel had been moving backward, away from a solution that would help MinnesotaCare folks, but that our stories contributed directly to these big leaps forward.

Frankly, I’m shocked, and that’s a bit sad, because what happened on Thursday is a perfect demonstration of how democracy is supposed to work. That it’s surprising is a good indicator of how rarely it does. The other panel member wrote, “When the kind of real-life story you brought into the room is missing from the discussion, the discussion often ends up harming consumers and workers.” You’d think that these stories would overcrowd the boardrooms and meeting halls–heavens know everyone’s got them–and make decision-makers emotionally fatigued and jaded. And if these stories can be so powerful, you’d think there’d be a line out the door at every meeting, of people deploying their own experiences to influence government and corporations. But I was thanked for being courageous and powerful, when I felt anything but as I spoke of my life and my loved ones. Telling stories is what my family does, and this didn’t feel any different.

But let me tell you all–your personal stories have immense power. They sway voters, shape policy, spur movement, support progress. That’s the core strength the Minnesota campaign against the anti-marriage amendment has going for it–the entire strategy is based on telling our stories of love and commitment to convince people that marriage matters to everyone.

So tell them. Practice them on me, on your family and friends, on anyone who will listen. Then wait for the discussions where your values lie, where the hinges of your life join with your investments, your neighborhoods, your government, your world. Screw your courage to the sticking point, if that’s what it takes, and raise your hand. Say yes. Fill the silence with your stories.

Then watch the world change around you.

I saw my psychiatrist the other day for my regular check-in. As we went over the list of meds I’m taking, both those prescribed by him and those from other doctors, I said that the anti-depressant I’m on right now is working just fine, and that the only real change since I last saw him was that my pain management docs were having me transition from narcotic pain relievers for my fibromyalgia onto tramadol, a non-narcotic.

He looked up from his notes with a sudden frown, and said, “Oh no. That’s not good.”

Since all I’ve heard from day one of being a fibromyalgia patient is that narcotics are bad, and I’m bad for taking them, and I might as well be a crack addict, his response startled me. “Why isn’t that good?” I asked.

“Have they warned you about serotonin syndrome?”
“No, I’ve never heard of it.”
“Well, it’s a fairly rare thing, but when you take more than one drug that affects your body’s serotonin level, you can get serotonin syndrome. You don’t know you have it until you become symptomatic, and once you’re symptomatic, you’ve reached the point at which there’s a 20% mortality rate.”

“My pharmacist didn’t tell me there were any contra-indications…” I began.

“Oh, no, it wouldn’t show up as a contra-indication because it doesn’t happen all the time. It’s just a possibility,” he replied.

“Yeah, but it’s a possibility that kills 20 percent of the people who get it.”

He nodded, and leaned forward to whisper, somewhat conspiratorially, “Really, the Vicodin is much safer for you to be on.”

I was stunned. Not once in the 12 years I’ve been taking various medications for my fibro and my depression has a single healthcare professional ever even mentioned the existence of this potentially fatal drug interaction.

And when I looked it up, I got even more alarmed, because you don’t even have to be that sick, or taking a bunch of medications, to find yourself at risk for serotonin syndrome. If you take any kind of SSRI or SSNRI anti-depressant or smoking cessation drug, and you take medicine for migraines (the triptans), some pain relievers, even cough syrup containing dextromethorphan, you are at risk. If you take an anti-depressant and anything else–over-the-counter or prescription, regularly or sporadically–I can’t urge you strongly enough to read up on this condition.

If the only way to know you’ve got it is to understand the symptoms when you show up, you kind of need to know the symptoms. If it’s caught early, 80 percent of those who get it survive. But if it’s left untreated for more than 48 hours, you rapidly arrive in that other 20 percent territory.

I don’t expect doctors to know every drug and every symptom and read me chapter and verse on every possible reaction to each drug alone or in conjunction. It’s not like doctors and nurses even have drug books or PDRs sitting around in their offices anymore; the Internet has pretty much put those publications out of the print business. But with drugs as common as the ones I’m talking about, and with a potential reaction with a not-inconsiderable number of deaths attributable to it, you’d think it would’ve come up with at least one of the dozen or so doctors and specialists I’ve seen over the last decade.

And it reminded me, yet again, that some doctors just don’t see a problem with withholding information from their patients. When I started grad school in 1997, I started getting absolutely blinding tension headaches. The doctor who saw me at the student health center prescribed me a tricyclic anti-depressant to manage them; it’s a not-uncommon off-label use. In the six months that followed, I put on somewhere around 45 pounds, at the same time as my husband and I went vegetarian and I was using an elliptical machine every day. I was frustrated and distraught at this inexplicable weight gain, and my self-esteem was devastated.

It wasn’t until two and a half years later when a female CRNP said, “Didn’t the doctor who prescribed it warn you that one of the most common side effects is moderate to severe weight gain?” I gritted out, “No, he most certainly did not.” She sighed sympathetically and asked, “A male doctor?” I nodded. She said, “They do that all the time. They just don’t think it’s a big deal. They don’t understand how women take that sort of thing.”

I’ve never managed to get my weight back down to where it was before I went on that medication, and that struggle takes a daily toll on my feelings toward my body, my self-worth, and my sex life. That a doctor wouldn’t think to warn me of something that major, because he didn’t “think it was a big deal,” makes my head explode. Just like it did the other day, when I was finally been warned of the risk I’ve been exposed to for so long.

I’d like to be able to just brush it off and think that it just didn’t occur to all those professionals that I’d actually be more comforted knowing all of the reasonable risks I’m incurring by following one treatment plan over another. I know it’s not the same for every patient, but it’s probably that way for more patients than they think it is. More and more, information is power, and people believe that doctors aren’t infallible and patients can’t abdicate understanding or control of their conditions.

Once again, I’m reminded and reassured that I really am my own best advocate. Sadly, what I’m most looking for in a physician these days is one who respects my knowledge of my own body, my medical history, and my research skills. It stings to pay someone with a prescription pad to just execute the treatment that I’ve found to be best. The least I can expect is fair warning if something either of us has come up with has potential side effects and risks. And when that warning isn’t given–when you discover the risks on your own or, gods forbid, through a close shave–it erodes your faith in the whole system, and every well-intentioned, well-educated professional who comes after them suffers the consequences of the mistrust that others earned.

Art by Roy Best

Reverb Broads 2011, December 3:

How did you become more of a grown-up this year? Or did you pull a Peter Pan and stubbornly remain childlike? (courtesy of Bethany at http://bethanyactually.com/)

I did two pretty adult things this year, though no one who knows me would ever respond in a lightning round with the word “grown-up.” The first may not seem like much to all you gorgeous fellow wage slaves out there, but I’ve actually held down a real, non-academic job for the last 12 months.

I’ve been doing that since I was 15, you scoff? No big deal, you say?

Perhaps it is no big deal. Perhaps you think I’m a spoiled ivory tower wimp who’s never done an honest day’s work in her life. I think you’d be less likely to say that if you’d ever graded 75 blue book essay exams in 36 hours, or written a 2.5 hour multimedia-enhanced lecture in an afternoon, while bouncing a baby basket with your foot.

Academia, with a side of substitute teaching in two school districts, has been all I could manage in the years of fibromyalgia plus non-school-age children minus child care subsidies. I’m not complaining — teaching has allowed me to be there more for my boys (all three of them) than I ever dreamed I’d be able to. And, simply put, teaching is my vocation, in the old, spiritual-calling sense of the word.

But I really, deeply, truly adore the job I have at Atlas Games these days, and both my responsibilities and my hours have expanded since I started last November. I started out just handling customer service requests from the website, and managing the packing and shipping of orders to our distributors. I still have these duties, and I enjoy them, but I’ve been entrusted with the first pass of edits on our RPGs, and I’ve done art direction for the last two books, both of which really make the most of that part of my skill set.

All this is made both possible by my fabulous bosses, John and Michelle Nephew. I respect the hell out of both of them for their many talents, but more than that, they’re good people and good friends. They let me keep flexible hours, so I can be Connor and Griffin’s Mom (my other job title) and do fun things like chaperoning field trips, and so I can take it easier on the days when the spirit is willing but the flesh is weakweakweak. I’m bemused to find myself in the same industry as my Darling Husband, but I couldn’t be happier in a non-teaching job than I am right now.

The second grown-up thing I’ve done this year is starting to take care of myself. I’m still not any good at putting myself first, but all the fabulous coaching from the excellent folks at Fairview Pain Management Center has taught me many reasons and many ways to look after myself better than I have in the past. So now, when I recognize that I’m on sensory overload, I don’t hesitate to just step out for a few minutes. I take mini-breaks, even if only for five mindful breaths, throughout the day, which helps me better evaluate the messages my body is sending. I’ve adjusted the way I do my jobs as worker, wife, and mother to incorporate body mechanics that keep me able to work longer and smarter. And at the end of this year, I’m managing my pain with 25-50% less medication, the least I’ve been on in almost nine years.

So that’s how I’ve matured this year. Everything else? Peter Pan all the way, baby.

I don’t have many reasons to write creatively (or any other way) in the course of everyday life. That’s no criticism of my work or my family life, just a statement of fact, similar to my frequent lament that intellectual conversation can be hard to come by as well. And NaNoWriMo isn’t my deal, because while I very much enjoy writing descriptions and dialogue, my plotting skills are woefully inadequate.

I’ve been really enjoying the mental and spiritual exercise of writing this blog, and only the lack of regular direction has kept me from writing even more entries. So you can imagine my delight when my friend Dana Carlisle Kletchka pointed her fellow blogifying females at Reverb Broads 2011. The organizers have assembled a fun and daunting set of prompts, and an impressive list of clever women to write on them.

So, today it begins with the first prompt: If the you of today could go back in time and give advice to any of the previous yous, which age would you visit and what would you tell them?

I maintain that I wouldn’t change anything in my life, because I’ve ended up almost exactly where I want to be. But there are just two points where a bit of perspective might have helped me endure, or not endure, as the case may be.

I would tell my 15 year old self that, though leaving the faith of my mother and her mother would be a scary thing to do, Christianity was not the world view that would feed my soul or bear me up in the darkest moments of my life. I would tell her that the lessons of faith that I’d observed in those women my whole life would actually inform my search, and that I would recognize the ring of truth when I heard it. Most importantly in all of this, I would tell her that setting out to find our way wouldn’t mean a life without spiritual community — there are so many more people on that road, who will love and support your search, than you ever dreamt. In fact, there’s a whole religion devoted to that free and responsible inquiry.

I would go back to my 18 year old self and tell her that I’m worth better treatment in relationships than I’d received so far. I already had a fairly warped view of what I should expect from significant others — I had experienced the wildly romantic, but I also thought I would never be enough for anyone, and I’d put up with some pretty egregious and thoughtless exploitation. I would tell 18 year old me that she isn’t wrong in thinking she would have to go to the ends of the earth to find the person who would complete us, but not to worry — the Internet would turn out to be a much bigger thing that any of us thought in 1992.

And I would tell my 24 year old self not to tell my History department that I was considering a semester of medical leave to deal with my fibromyalgia. She didn’t know that they would take “considering” to mean “had decided to,” and that they would screw things up in ways that would never be repaired. I would tell her that fibromyalgia has its ups and downs, that it’s not always going to be as bad as it was right then. It lasts longer than grad school, but grad school has an end, and you can outlast anything finite.

Also, when people ask you to rate your pain, and you tell them that you’re leaving 9 and 10 on the scale for childbirth? You’re totally right.

Finally, I would tell 30 year old me that the odd things about her beautiful, hilarious son aren’t her fault. Sure, he’s been doomed to geekdom since before his conception — that will only enrich his life. But all those strange, inexplicable, seemingly unconnected things? They’re real, they’re something, and they’re not caused by bad parenting. And finding out about the Asperger’s Syndrome that underpins them all will reveal a piece of our own self that we never imagined existed, lighting up connections that have dwelled in dark mystery since our earliest days. I would tell her to be kind and patient to him, and to herself, even at those most frustrating moments when it looks like he’ll have to fight the same battles we’ve already struggled through.

And to all the previous mes: be easy with yourself. People will love and value you, not just despite all your weirdness — they’ll love and value you for it.

Pain and I are old friends. We go way back. I know pain’s facets and variations; pain doesn’t have too many surprises up its sleeve for me anymore.

And, as much as anyone can make this claim, I’m pretty good at pain. For years before I gave birth to my kids, I refused to claim 9 or 10 on that happy-face scale doctors use to have you rate your pain, saying I was reserving those two notches for childbirth. And as labor with my first son ramped up slowly and steadily over 12 hours, my midwife thought it was funny how I announced that yes, in fact, I had scaled my estimation of pain perfectly. That perspective helped me get through that delivery without any interventions, which is still a point of pride for me.

I was diagnosed with fibromyalgia in July 1999, possibly stemming from soft tissue damage caused by a car crash ten days before my wedding in 1996. I’d been prescribed amytriptaline for severe tension headaches that showed up when I started grad school in 1997 — tension? grad school? astonishing! — but apparently that’s a drug that occasionally just stops working. It’s also a drug that’s frequently used to treat fibro, and it seemed to have been masking the development of the syndrome’s symptoms, which all came tumbling out in an untidy pile that spring.

But without getting into all the problems of treating a disorder that nobody understands or knows how to treat, the long and short of it is that I’ve lived with all-day, every-day pain for well over a decade now. That means I’ve become quite a connoisseur. I know the nuances of it, from the flu-ache-like muscle weariness that characterizes fibro, to the silvery stabs that shake my whole body with convulsive spasms. I carry around the heavy, grinding knots that drag on my lower back, and lean away from the bright streaky pain that twists in the triangle from my temples to my jaw to my shoulders.

The irony is that, as good as I am at tolerating a daily level of pain that drives many people into the ER for relief, I can be a total wimp about new, unexpected pain. Sunburn? Toothache? Gallbladder attack? A fresh injury? I produce as much whine as the south of France. Imagine a baseball umpire who’s put up with the vicious insults and recriminations of players, coaches, and fans, only to burst into tears when a schoolkid calls him fat. It’s almost as if I’m only capable of managing steady, stable pain. The unpredictable spikes of acute pain seem to upset the delicate balance of tolerance and management I’ve established over the years.

I started a pain management program at the University of Minnesota. It follows the interdisciplinary mindfulness-based curriculum developed by Jon Kabat-Zinn and his colleagues. I didn’t have high hopes for the program, but I’ve been pleasantly surprised by all the ways it’s defied my expectations. I’ve learned a lot about the physiology of pain, some of which I’m pretty shocked to have been hearing for the very first time, this far into the process. And I’ve worked with the pain psychologist there to start unraveling the messy relationship between pain, guilt, self-worth, and unreasonable standards. There’s a lot of work left to do, but I’m better now at staying in the moment with pain, rather than shoving it down and away to keep pushing through with what I think “needs to get done.”

Because of a snag with renewal, we’re currently uninsured, and that’s causing all sorts of problems, including having to go off all of my maintenance meds rather abruptly. While I’m very anxious about the potential for a depression relapse, one thing I feared hasn’t really happened: I’m not in a ton more pain. It’s still more than I can manage with just heat packs and ibuprofen, but I’m not laid up the way I have been in similar circumstances in the past.

This prompts a question: do I remember who I am when I’m not hurting? I’m not the same person I was before that car accident and all the things it precipitated. I haven’t been a married woman without pain. I haven’t been a mother without pain. I can’t say I’m afraid to step out from behind it, like a person who’s worn glasses their whole life faced with the option of corrective surgery. But it’s intimidating to realize that most of the important people in my life haven’t known me without pain. How would any of them treat me if it just weren’t there anymore? Would they be as forgiving, as willing to accept it when I have to say no to something? Would they require more of me, to make up for the years when pain gave them short shrift? Will they be disappointed in how many problems don’t go away, how many weaknesses turn out just to be me, not the pain?

It would be the biggest surprise of all if turns out that I’m more comfortable with my pain than I am with my true self.