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Making the Invisible Visible

September 13, 2014

I told you I’d be back for Invisible Illness Awareness Week!

Most of my life, I’ve known pain. That’s not a blues line, or a metaphor. I’ve known actual, physical pain. Many people have. I know I’m not alone in that. But since I was a toddler, nearly two-years-old, I’ve been battling a potentially crippling disease: Rheumatoid Arthritis. Not everyone knows this, but kids get arthritis, too.

For a long time, I struggled with the visibility of my disease. As a kid, I’d see my peers’ scrunched up faces, asking, “Arthritis?!? Weird. My grandma has that.”

Shut up, Bieber. J'accuse!

Shut up, Bieber. J’accuse!

I had the, “why doesn’t she have to do the mile run? No fair!” Comments about my “orthopedic Keds” from a guy I had a crush on because I was wearing the tennis-shoe-version instead of the then-trendy canvas style.

Et tu, Taylor?

Et tu, Taylor?

My parents advocated for me in the classroom, with doctors, with friends or family who didn’t understand. As my disease went in and out of remission, with flares in my knees or my hands, I had to navigate spaces differently based on each day. Because we struggled to control my disease, one day I would be fine, the next I would be home or need extra help. I needed teachers to open my milk for me at lunch long past you were socially allowed to ask for that kind of help.  My fourth grade teacher once carried me back from a park because my knee was so inflamed, I couldn’t walk back with our class. I had a shop teacher who made other kids build my projects because he was determined to set my limits for me instead of letting me even give that wooden box a shot. He picked the most attractive 8th grade boy to do it, too, because my life has been, thus far, one epically-long romcom.

What happens when someone goes to shake my pain-afflicted hand in church or in a business setting. I’m thinking about trading this move in for an awkward hug.

Most of my childhood I felt somewhat helpless, and visible to the point of conspicuousness. So as my disease became more stable in my teenage years, I worked hard to make it invisible. There would be times when I couldn’t avoid the limitations, but as a young adult, I had a bag of tricks that would protect my cover. Still, I had to constantly make judgments based on social stigmas: should I go on that hike with my friends and risk being the person that has to sit on a rock halfway around while the others finish the journey? If I drive us around, is there someone with me who can pump my gas or will I be too ashamed to ask, so I should fill up first? Will my medication’s side effects embarrass me at a sleepover or, later, in a dorm? Because of the relative stability of the disease, I was able to recruit a few trusted sidekicks who could open ketchup packets. I had people to carry my books when I had a joint in my hand replaced my senior year. And none of those people teased me for wearing elastic-waisted pants for a month (Google “adaptive clothing” sometime and see what happens: lots of velcro and outfits that look like scrubs).

Sometimes the jokes make themselves, y'all.

Yeah it does. Sometimes the jokes make themselves, y’all.

Dating was rare, and difficult, and though I was more comfortable as I got older advocating for myself with doctors, professors, and other adults, being “out” about my limitations and pain was still not easy with peers. Too few people understood how rheumatoid arthritis worked. Comparing it to even more misunderstood autoimmune diseases like lupus or fibromyalgia (which my spell-check doesn’t even recognize as a WORD) was generally unhelpful. I developed standard answers for questions about my hands: “Are you double-jointed?” And snappy comebacks for people that yelled at me for parking in disabled parking spaces. I could talk about my RA on an as-needed basis, but I certainly never led with it in a conversation. I didn’t want the label. I didn’t want the presuppositions. And I could avoid all of that because, like a number of other illnesses, RA is relatively invisible.

For as long as I can remember, I’ve been a thundering advocate for other people. My mother taught me well how to stick up for, promote, and take up the cause of overlooked or marginalized people. I’m happy to be a champion for other gal. Marginalized people should know they matter. Disabled people shouldn’t worry about whether or not they’re “worth the trouble” that accessibility might cause able-bodied people. I’m a firm believer that human beings are always worth the effort.

It’s only in the last few years that I’ve begun to see how sticking up for myself should be part of my repertoire. If I can’t advocate for myself, and push for a world that makes room for me, then I’m a total hypocrite. I’ve never had trouble doing for my neighbor, but in almost a commutative version of the Golden rule, I must do for myself what I would do for my neighbor.

One of my personal heroes, disability rights activist Harriet McBryde Johnson, wrote a gorgeous story about her encounter with eugenicist Peter Singer. At one point in the debate, she describes the difference in their worldviews (emphasis mine):

To Singer, it’s pretty simple: disability makes a person ”worse off.” Are we ”worse off”? I don’t think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs.

Harriet McBryde Johnson (1957-2008)

Harriet McBryde Johnson (1957-2008)

After years in grassroots advocacy for women and children, I was invited by my rheumatologist to participate in Advocates for Arthritis. So, for two days of every September for the last four years, I’ve joined a band of doctors and their patients in lobbying their government on behalf of the American College of Rheumatology to pay attention to arthritis. A team of us from every state in attendance visit as many offices in our districts as we can: House and Senate offices. We lay out our public policy priorities and ask our representatives for a commitment. Some years, we even get one. We always get photo-ops.

This was a couple of years back, but it was practically a Christmas miracle that this many arthritic people could get up and get ready early enough for a 7:00 am photo shoot.

This was a couple of years back, but it was practically a Christmas miracle that this many arthritic people could get up and get ready early enough for a 7:00 am photo shoot.

My favorite part of the event (apart from the actual lobbying) is meeting other patients. This year, I met a woman with fibromyalgia who is unable to work because of her disease, and the number of doctor’s appointments she currently has in an effort to get her disease under control. She was just denied disability for the first time, after seeking help from a disability law firm she saw on TV that swindled her and held up her application process in order to collect a percentage of the back-payment in the event that she was awarded.

Another patient I met currently has her Lupus under control after losing two years of her life to the disease while she was working on her dissertation. She was turned down four times by her insurance company before they finally approved the drug that has put her into remission. Neither she nor the patient with fibromyalgia “looked sick” enough to get the accommodations they needed during their disease flares. This invisibility is what we go to the Hill to talk about each year. We bring bent fork lapel pins and impossibly bent toothbrushes to illustrate how hard it is for people who “look fine” to manage their daily tasks.

Eat it, arthritis.

Eat it, arthritis.

This year, we talked a lot about access. Access to drugs that, if they had been available to me as a kid, would have probably prevented the hip replacement I got three years ago (and the one I’m expecting to have in the next three years). These medications aren’t cheap, and because of a number of factors, including the bizarre hyper-patenting of biological materials, there aren’t what we would consider “generic” alternatives available yet. Several of the advocates I met cannot afford their medications, which cost anywhere from $2000-7000/month. Both the Arthritis Foundation and ACR have proposed legislation that would address these costs (and insurance company evasion of cost-sharing).

The other area of access we discussed was the availability of doctors to treat our diseases. Rheumatologists are specialists, but most of the work they do is what they call, “cognitive” evaluation. Rarely do rheumatologists perform procedures or order expensive lab tests, so when you’re checking out and you take your exam slip to the payment desk, there’s only one code circled: diagnostic/evaluation. They’re essentially billing the way that pediatricians, general practitioners, or neurologists do. But they spend much more time in the room with their patients than family physicians do. Every time I see my doctor, it’s at least a thirty minute visit. She’s asking about every joint in my body and examining them. She’s asking me about trends and we discuss pros and cons of my medicines. A lot of the time I feel like a walking science experiment: because I am. Give this drug three months and see if it helps. If not, we’ll try that one. All the while, my doctor is billing fewer patients and getting paid less money.

At a time when medical school and college loans are on the rise, doctors are coming out of school compelled to choose profitable careers, not necessarily scientific ones. Rheumatology is investigative, scientific practice. It’s observation and management, not cut and cure. As a result of these factors, the average age of those practicing rheumatology is mid-50’s. Many of the docs I know are preparing to retire. We have 50 million people in the U.S. with arthritis, and fewer than 5,000 rheumatologists. Pediatric rheumatology is already in crisis:

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This doesn’t even give you a complete picture of the situation. Take, for example, my home state of Virginia, looking good in the 4 or more category. One of the rheumatologists I was lobbying with told us that number is really 4 full-time pediatric rheumatologists (all east of I-95) and one part-time pediatric rheumatologist just outside of DC. He said to get to the next pediatric rheumatologist from where he practices in Richmond, driving west, you’d have to go to Louisville, Kentucky. Several of the children he sees drive 4 or more hours to their appointments with him. That’s unconscionable. I’m honored I get to tell my representatives and their staff as much [respectfully] to their faces.

We also addressed significant cuts to the National Institutes of Health research funding, which has been creating losses across academic fields and in areas of study. Many of us spent our summer watching friends and family dump buckets of ice water on their heads to raise money for ALS research.

But if you really want to support medical research, get on the phone to your member of Congress and demand a stop to cutting the National Institutes of Health budget, experts say. That’s because private donations are a figurative drop in the bucket compared to U.S. government funding. NIH pays out $30 billion a year for medical research, compared to about $5 billion raised by philanthropy in 2007. -Maggie Fox, NBC news

Lobbying on these issues has given me an awareness that I’m truly not alone. There are patients and doctors who will saddle up with those of us living with chronic illness and pain. It’s a good reminder to see my team every year and to have colleagues who are ready to just hop into a cab if I can’t keep up. But these events have also empowered me with an opportunity to make myself and my disease conspicuous on my own terms, for the greater good of others like me. It’s made me more comfortable educating people about my situation and I don’t mind being the poster girl for arthritis anymore.

These orthopedic shoes turn out to be pretty useful for marching on Washington.

The docs and me. Totally aware I'm the Bosley in this situation.

The Capitol under repair, in its feature role as a metaphor for American government. With the docs and me. Totally aware I’m the Bosley in this situation.

Probably one of the best photo-ops of my life with Congresswoman Eleanor Holmes Norton. I'm a frikkin' gladiator.

Probably one of the best photo-ops of my life with Congresswoman Eleanor Holmes Norton. I’m a frikkin’ gladiator.

#PTAproblems

August 27, 2014

I posed a philosophical question on Twitter this week: “Can systems really be changed from within?”

A couple of years ago, I got drafted into the PTA at my kids’ school. I say “drafted” because I initially volunteered for something else entirely, but was talked into taking it on when no one else would do it. I was moving out of a season of political and social activism, and I wanted to throw that energy into something closer to home. In everything I do, I want my kids to see how important it is to engage their community, and for them, it doesn’t hit any closer than working in their school.

Most people think of the PTA and they think about the stereotype.

bake saleHonestly, that’s what I thought of, too. But the PTA as an organization has a long history of social change, and a lot of it has centered on creating more diversity, protecting the poor, and advancing a democratic philosophy of education. Our school has some demographics that to me, made the prospect of PTA work more interesting. For one, our school is only 28% white, 40% of our students are hispanic, 16% are Asian,10% are black, the rest of the students, 5%, fall into that nebulous and pejorative racial designation “other.” Our school is also a Title I school, and half of our students are on free and reduced lunch. I was interested in getting involved in a PTA that served these families.

Cultural appropriation, FTW

Cultural appropriation, FTW

But when I got there, there wasn’t too much that defied the stereotype. We had a couple of people of color on the Board, but it still didn’t look like our school. I was at the helm, another white lady, and most of the Board was white as well. Most of our Board was from the more affluent segment of our families. And many of the programs and activities were institutionalized, driven by the “we’ve always done this” factor. Most of our Board, however, was likeminded in wanting to see an increased inclusivity in the organization. The national PTA’s standards for family engagement call for shared power: between parents, between parents and the school, and between teachers and administrators. The goal is partnership, with the understanding that both parents and educators want children to succeed and discover their unique capacities so they can contribute to the betterment of society for all people.

The first year, I just struggled to keep up. Being a part of a new class of leaders while veterans were still hanging around in Board-level positions meant dancing between preservation and innovation, history and future. We made some strides, but were really hoping to do more as sophomores. The second year, we worked to set up the next class of leaders, hoping they would build on what we started when we set out to create an environment of invitation for new stakeholders to participate. But this new class has their own ideas. Most of them are in sync with what we wanted to see change, but they’re compelled to do the same dance.

This makes me loopy.

This makes me loopy.

Because in the PTA, the power resides with those who show up. There’s often talk of “those parents” who don’t come out to meetings or volunteer. But there’s not a lot of curiosity about what holds parents back from PTA involvement. Rarely do we talk about how a PTA can “show up” for families.

In my time as President, and even now in my current role as membership chair, I’ve seen the best in PTA leadership: parents volunteering for hours, working full-time jobs and enduring thanklessness to make our school better for our kids and families. I’ve seen moms and dads who show up for teachers (who themselves spend their own time and limited funds on the kids in their classes). I’ve seen leaders at the district level pushing for restorative justice rather than punitive procedure in school disciplinary policies. I’ve watched them agitate for healthier meals and a more dignified treatment of children receiving free or reduced lunches.These people are champions for children. And a number of them are empty-nesters without any kids in the system.

But I’ve also seen the worst in PTA leadership. I’ve seen parents “in it” for their kid alone. I’ve seen leaders cut budgets for student activity scholarships arguing that “scholarships only benefit a few of our students,” “it’s not fair to the kids who CAN pay for us to adjust programs just because they’re completely inaccessible for poor families.” I’ve heard diatribes about parents who “don’t care enough to come to meetings/volunteer like we do.” I’ve seen leaders stand in front of our Superintendent and say their academically gifted student should be “penalized” by efforts to move kids into a mainstreamed, diversified setting. I’ve heard them say they didn’t want to shift school boundaries because they might end up at “that school” and on and on. I’ve seen elitism run amok and a concern for the bottom-line that compels poor decision-making and in-fighting over which kids get served. Every time, kids with special needs, kids living in poverty, kids that need language services (which at our school is 38% of the student body), are pushed to the margins.

Writer Suzannah Paul articulated my frustrations this week in her tweet:

fundiesSee, the argument I’m getting into with my colleagues 90% of the time is a disagreement about two things: 1) what we see and 2) how we respond to it. Several of my cohorts are blind to the disparities that exist in our population, and even the disparities between the work of our school and the work of our PTA. Our educators know they have to diversity their instruction: that one size does not fit all. They *see* the population we’re serving, and they adjust their strategies to get all our kids to a point of confidence and success. They don’t always hit the mark they want to hit, but at least they aren’t wearing a blindfold and just throwing punches in the dark.

I see what you did there.

I see what you did there.

So we need to be serving the school we have, not the school that, in all our privilege, we wish we had. Secondly, we need to get real about the solutions. “Treating everyone the same” will not help all of our kids succeed. I’m very attached to this “share power” idea, and I like what Suzannah says about privileging the margins. I have no idea how I can help our current Board, myself included, take a back seat and elevate the voices of the unheard and “uninvolved” parents, but it has to be done. I’m a little concerned that our efforts to diversity leadership thus far have only achieved tokenism, window-dressing change, and not a real shift in power.

I actually got a little riled up (shocker) at a recent meeting and after several attempts to calm me down, looked at my colleagues and said, “I’m passionate about this because our PTA doesn’t exactly represent our school. Someone has to speak up for the people who aren’t at the table here.” But I’d rather have people at the table than speak *for* the marginalized. If anyone has ideas on this, please please please share them with me in the comments. Perhaps I’m taking up space by participating at all. But I’m hoping in this role that I can reach out and bring new folks into the organization, and maybe by sheer numbers, we can begin to see people with different perspectives and ideas enter and voice those ideas.

I don’t know if organizations can be changed from the inside. I don’t know if an institution can be “reformed” this way. I keep thinking about what Audre Lorde said, “The Master’s tools will never dismantle the Master’s house.” But given that the PTA is a membership organization of teachers and parents, I’m inclined to think that there’s a possibility for it to be what *we* make it. Maybe that’s naivete or romanticism. I’m open to that possibility. And I’m open to investing my efforts elsewhere, but for now, I won’t give up the ship on it.

Feel free to disabuse me of my hopefulness or to offer practical suggestions or encouragement below. I’m still working this out, so I’m pliable, y’all.

Coming Soon! Probably!

August 27, 2014

Hello from the far-reaches of the Summer Vacation that Never Ends! I can’t wait for school to start. Come September 2nd, if you need me, I’ll be roaming the streets singing praises to God.

I’ve been devoting more time to other writing endeavors since the shooting of Mike Brown in Ferguson, Missouri a few weeks ago. Like many of you, I’m deeply disturbed by our national apathy about what has been happening there. If you’re so inclined, you may visit me there and we can catch up a bit.

I’ll be back around these parts once the kids return to school next week. You’re probably wondering, “what in the world would keep you Virginians from starting school when the everyone else does?” My hand to God, y’all, it’s because of a theme park.

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Learning is better. You kids should be in SCHOOL.

I only popped by to put in a little plug for an upcoming post on my lobbying adventures with Advocates for Arthritis. I’m going to be walking and writing during Invisible Illness Awareness Week, so that means I’ll definitely have an RA flare around that time. It’s gonna be swell. Get it? Swell! Man, this room’s tougher than a frequently-used injection site.

If you’ve been following me these last few years, you know I hate making writing promises because I’m just bad at follow-through (for reasons not entirely under my control). But I want to make more space for my battles with RA precisely because a lot of it is fought behind-the-scenes (thus lending to the illusion that I am, in fact, a superhero).

I know lobbying adventures aren’t that exciting for some of you, but unlikely things can happen when you put a hoard of travel/disease-fatigued ornery people on a mission to meet their reluctant representatives.

Been watching West Wing all summer to get ready.

And when Congress is in session, there’s no telling how crazy it will get. Like that time one of the doctors grabbed Ron Paul for pictures…

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…and I became his BFF.

 

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More accurately, I scared him a little by putting my arm around him, but, hey, BUDDIES. I collect libertarians for fun.

So mark your calendars and I’ll stock up on anti-inflammatories and meet you back here in a few!


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The ladies who lunch and me

July 31, 2014

Over the last few years, I’ve been an on-and-off-again member of a local gym. When I first joined, I honestly was looking for reprieve from life as a stay-at-home mother. I had two small kids, very little energy that was left when they were done with me each day, and no babysitter. The gym has a childcare center (SUPER important priority) and a couple of pools. Behind the child care, the pool was the big sell for me.

As a person living with Rheumatoid Arthritis, you get a lot of lectures about the importance of exercise. You hear a lot from your body, however, that exercise is for fools and that there heating pad is your BFF. You can’t betray HER!

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She’s so pretty and blue and she keeps all your secrets. And if you fall asleep without turning her off, she has a safety shut-off that prevents you from burning your house down. She just saved your LIFE.

Exercise is hard for anyone other than the people who are frighteningly disciplined about it. But it’s particularly difficult to be motivated when you’re already hurting before you even get to the gym. And I don’t care how many professional golfers shill for drug companies, RA isn’t the kind of disease most of us can battle while playing all manner of sport.

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Just sit down, Phil Mickelson! You’re making us all look like lumps. I love that this is the “waiting room copy.” Because I need that in my face right before I get another round of lab work.

By far, the best form of exercise for an arthritic is swimming. The water offers resistance, but also has the added benefit of making you lighter than you are on land. I love swimming. It’s like flying, but wet.

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That’s one wicked turtle.

 

It seemed like a natural decision, therefore, to join a water aerobics class. I had tried arthritis-based exercise once before in high school when I joined a class held at the local office of the Arthritis Foundation. It was called “arhtrobics,” and it was awful. I felt like a big jerk standing there in my limited, but still outwardly 16-ish, body with seriously-old people who could hardly move doing modified jumping jacks (lifting your arms while sticking your legs out one-at-a-time. Imagine a sideways version of the hokey pokey with absolutely NO turning all about). I did not return to arthrobics.

I was a little concerned that water aerobics might be similar, but there’s a nice window you can watch the class through and everyone seemed to be able to lift their arms, etc. It looked like the right amount of challenging for me, even though the only woman remotely close to my age was a pregnant lady.

The first few times I went, it was just like any other first-day-of-school experience. Everyone seemed to know what equipment they needed for class, so I walked over to a giant white bin and grabbed a noodle and two noodle-wrapped barbells and set them down on the edge of the pool. The water was obscenely cold. So I started to bob like the other attendees and soon enough, class was underway.

A svelte middle-aged woman started to play club versions of 90’s songs (Waterfalls, anyone? Pool puns!) and then she told us there would be no “cheet-chat.” I couldn’t discern her accent then, and I’m still not quite sure if it’s German, but when she’s gesticulating and yelling at an old woman to “give me more POWER! POWER!” it sure feels like German.

And it was hard. Water aerobics is that kind of sneaky exercise that just feels like you’re playing around but then, a few hours later, say, when you’re at the grocery store, there’s an overwhelming warming in your arms that makes you think they’re going to fall off, and you start to panic because you bought three gallons of milk that are definitely not going to be lifted out of your cart by you. I was shocked at the pain, but glad that at least that hour of splashing had done something (even if it made me want to end Germany or wherever, once and for all).

But what surprised me most about the class was the camaraderie. While we were all grunting and nearly drowning ourselves with exertion, our instructor got pretty chatty about her newfound love of spaghetti squash. She called many of the women by name, even threatening the class with more reps if one particularly social woman named Millie, starting “cheet-chatting.” We were all supposed to say, “Thank you, MILLIE,” when we got the extra reps. Yep, gotta be German.

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And smile when you say it, ladies! This is basically what our class does, but it looks different as we have several women of color and only white noodles.

As we were cooling down, the instructor mentioned that the class would be having lunch together in a week. She held up a sign-up sheet and encouraged us all to come. I thought about it, but didn’t sign up that first day. I’ve been going for a while now, and I’ve talked to a couple of the women, but it’s always, “Man, the pool’s cold today” level, pre-class chit chat.

Today, when we were done, there was another invitation. My kids are currently home for the summer, so I told myself I’ll just catch up with the Aqua ladies in the fall, when the kids are all back in school. As I was walking into the locker room, I noticed the woman in front of me had a hip scar like mine. I heard several women telling the instructor how much they needed this class: its blend of rigor and the grace to do what they could do. Another couple of them were inside-joking about their book club. I thought to myself, “this is a group of women I get.” It’s always been like this for me with my own grandparents, other people’s grandparents. I know all their medicines, their therapies. And now, thanks to my hip replacement, I’ve had a taste of their surgeries.

One of the women spoke to me while I was getting dressed (still not used to having conversations with strangers in my bra, but that’s gym life). She introduced herself and asked me if I had come to class before. I have. She told me about their lunch group and asked if I wanted to put my name on the e-list for updates about their social gatherings. I told her to sign me up and gave her my address.

Just yesterday, my rheumatologist ordered a relatively new lab test that can help determine how active my disease is so we can assess the rate of damage being done to my body. When I think about it too much, it’s a strange thing to be physically withering at my age, but I am. I’ve been living with RA since I was little, growing and withering simultaneously. Most of the women in my class have only known the physical pains of aging for a decade or two. I’ve known them for three. It shocks them, but it’s my normal. Like my grandparents, and now my parents, the women lament how “they just can’t do anymore.” I’ve been able to do my fair share, but in some of the more typical ways of doing, there are things I’ve never been able to do.

This would seem to be a sad state, and it’s not fun. It’s not profound nor heroic. But it does give me opportunities to see and be with people that the rest of the world tends to miss (or dismiss). The slow-moving people. And that makes it a little easier to endure. I get to be part of the Aqua ladies who lunch. And that’s not a bad gig, even if a soft-hearted German fusses at you from time to time.

Can’t Turn it Off: Rest and Resistance

July 8, 2014
by

**Though this post was published in July, I’m linking it up for the August #SpiritofthePoor blog round-up. As a disabled woman living with chronic illness, I’ve been thinking a lot about how rest factors in to my writing and activism for myself and others.**

Last week, I got all geared up to begin this new adventure with writing. I had plans, I tell you! Big plans. For once, I had a pile of fodder for this blog, that blog, my other blog, and for pitching to several outlets where I stand a slim chance of getting paid for writing. I was pumped. And then, a flare hit.

In case you’re new around here, I have spent the last thirty-four years battling Rheumatoid Arthritis (yes, kids get arthritis, too). The last couple of decades, my flares are worst in my hands, though I’ve had several surgeries on my lower extremities, including a total hip replacement. I’ve worked full-time, and part-time, and as a stay-at-home mom, all trying to find the right kind of work to suit my particular challenges. I’ve become convinced, over time, that somehow writing should be a part of that.

Now, here I am in all my gumption with a full brain and broken hands, and a looming sense that the world was passing me by. This is what it is to be chronically ill: unpredictably stricken and frequently thwarted. It’s one of the reasons I’ve hesitated to call myself a writer. Because of the inconsistent nature of my disease, I’m reliably unreliable.

In my everyday life, I often push through pain to get stuff done, but then I pay for it with more pain, more damage. I have a few cheats and tricks here and there that can make some tasks easier, but every day hurts. Almost every minute. Doctors telling you to “listen to the pain” doesn’t really work in my case because pain is the constant. That makes it hard to pull back and rest when I need to: the whole idea of “need to” is consistently subjugated to what I think I “have to” do to participate with my family or my community.

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Tonight, I read this article on rest as an act of resistance by Rhesa Storms. She writes:

Resting may be the most countercultural and spiritual thing we can do as people who follow God.
It’s as if God knew we would have a hard time with rest. Living a crazy, busy life isn’t just a modern problem, living a crazy, busy life is a humanity problem.

From the very early dealings with his people, God desires to give them rest. That is the beauty of the fourth commandment: remember the Sabbath and keep it holy.

The word Sabbath means to stop. Full stop. Whatever you are doing, stop. Let your hands rest. Cease the constant consumption of ideas and information and products and simply be.

It is easy for us to get caught up in ourselves and begin to overestimate our own importance. So God gives us rest to set us free.

For weeks (he’d say years) I’ve been lecturing my husband on his work habits and the importance of Sabbath. I should hear myself talk. It’s hard to admit that rest is important when most of your struggles are invisible and can overwhelm you any minute: when one minute you’re hauling in groceries, and an hour later, you can’t effectively turn the steering wheel of your car. How do you stop doing when, at any time, you could be forced to stop doing? Even now, I’m typing notes for this post with swollen wrists and screaming fingers.

[Momentary internal interlude: Stop writing because this is ridiculous and you've caught on to your own hypocrisy here. But I have a point to make! Then get there already, lady.]

Could it be that this is a matter of trusting God? Perhaps. Sabbath usually involves relinquishing control over things we don’t really have full control over. I believe I trust Him with my success or failure here. If He leads me to this new avenue of expression, so be it. I can accept His timing on this writing gig. Truly. I know enough of Him to know that He does what He pleases the way He pleases because He always does good, even when the good hurts.

What I struggle to accept is the idea that the world ISN’T passing me by when I rest. That there isn’t some big empty scorecard or a shot clock that dwindles while I sit. I’m using sports metaphors here and they make me feel more inadequate because I don’t *do* sports. Based upon what I know from living here, not just in America, but in my own eroding bones, we value output. We value forward motion. We don’t value stop. We don’t value wait. I’ll be judged by those values. I’ve been judged by those values.

I’ve been told by people, “you’re so lazy.” “Get up and *do* something.” “All you did today was watch TV/play on the internet/talk on the phone.” “What have you even DONE today?” “It’s nice you get to lay around while the rest of us work our butts off.” I suppose to people who don’t have the luxury of forced rest, the sight of me sitting or laying down is cause for contempt or even anger. My slowness reminds them of their own hurried pace. It interrupts their agendas. Hey, I get that. It interrupts mine, and that is infinitely frustrating.

What I’m wondering though, is can I embrace the disruptive nature of my disease? As much as I enjoy being the up-front person or the woman with a soapbox, it’s always been difficult to shine a spotlight on the broken parts. I’d rather make you angry with a rant or make you laugh with a joke than invite one moment’s pity. And talking about arthritis this way, explaining how it messes things up for me and makes life hard, violates everything I’ve done in life to make all this look easy and fun. Everything I’ve done to be less of a burden on the world because the worst thing in the world is to be “needy,” or so the bootstrappers tell me. The sight of me “just laying there” is unfair, not because I’m laying there, but because they’re not. It’s unfair because we all feel pressed to live this way, as productive citizens on one big assembly line that never stops churning out who-knows-what. Laying here reminds you and me that life should be different. I shouldn’t hurt, and none of us should keep chasing after the wind.

I want to accept these limitations and frailties for myself, and see the good they can bring about in temporarily disrupting the selfishness in me and in the people in my community. It’s a risky thing to willingly become the [often unwelcome] speed bump in the lives of the people you love. But the idea that rest itself can be an act of resistance is an empowering thought. As someone who gets weary from fighting to participate in a race I cannot possibly win, it might be a nice change of pace to take the fight to bed with me. I’d like to think that as a disability rights activist, I would be more consistent in how I treat myself in this regard, but I’m not. In many ways, I’ve internalized ableist attitudes about my own worth, and that’s a whole load of crap I’ll have to keep working through, particularly if I want to set a better example for my children.

The shirt says it all.

The shirt says it all.

Perhaps I can wrap my head and hands around all that tomorrow. Tonight, the therapeutic ice packs and heating pad await.

Target, I miss you

June 28, 2014

I went clothes shopping last night. Lord have mercy, I hate it with a passion. In this case, I went to Kohl’s and did the usual pack-mule routine:

  1. Amass forty-eight items, besting the “six items, please” policy of most places eight-fold, make sure to get two sizes of everything you remotely like.
  2. Hurry into the dressing room before you catch the eye of a re-stocker or another shopper trying to beat you to the last stall.
  3. Sift through the stash and put the favorites on top, hopeful that at least five of these items will fit and be a reasonable price.
  4. Pause every six or seven items to just breathe and give myself a pep talk, “You’re going to make it. Yes, you really should have worn different shoes/pants/bra/hairstyle today.”
  5. Make sure the coast is clear before putting forty-six of the original forty-eight things on the rack at the front of the dressing room.
  6. Give the rack a once-over in case someone your size left something decent.
  7. Buy the two things that fit, neither of which you came here to buy.

I know I’m taking a risk here that one of you, my beloved readers, works in retail and just reading that list lights in you a fury that burns with the heat of a thousand suns. But it’s what I do. And I’m going to play the disability card here because walking laps around a store, fastening and unfastening countless buttons, bending over to find the last size 14 on the rack, and everything else that goes into clothes shopping is a pain in my…well, everything. So, I call arthritis. Sometimes, I can’t get those sliding, pinching things closed over pants either, and I just leave the hanger in the dressing room and the pants in a bin. There. Now you know I’m a horrible customer. If you see me coming, at least you’ve been warned.

I'm pretty sure the Devil invented these right after he created high heels.

I’m pretty sure the Devil invented these right after he created high heels.

I cannot remember a time when I had fun clothes shopping. There have been moments of satisfaction when more clothes fit than usual: like when I lost some weight, or during college when my boobs finally arrived. But historically, it’s been a nightmare. Perhaps this is why I wear so many fandom shirts?

You'd think this would be a source of shame but all I can think is that I really NEED that Rock-paper-scissors-lizard-Spock number I've had my eye on for a while

You’d think this would be a source of shame but all I can think is that I really NEED that Rock-paper-scissors-lizard-Spock number I’ve had my eye on for a while

The older I get, the more sense my mother makes to me. The woman has been going out in public in a muumuu for decades. She slips on some shoes, puts on the appropriate undergarments, and heads out to Harris Teeter or the hardware store in what she politically refers to as “a patio dress.” She won’t go out to eat like that (unless it’s a drive-through situation), but she gets the paper, waters the lawn, and generally gallivants in that thing. In the winter, there’s a button-up over-muumuu.

This pic is linked to a pretty interesting blog by artist Rachel Herrick who explores our culture's obsession with obesity; sometimes when you Google muumuu images, the results are frikkin' brilliant

This pic is linked to a pretty interesting blog by artist Rachel Herrick who explores our culture’s obsession with obesity; sometimes when you Google muumuu images, the results are frikkin’ brilliant

As a young woman, I was mortified that my twangy Southern mother would play to stereotype this way. Now, as a mom in her mid-thirties, I have come to believe that the woman is a bonafide genius. She’s not playing by anyone’s rules with her muumuu. Heck, it’s practically a form of protest to dress this way. There are women I know who won’t leave their house without make-up. I labored in that Kohl’s last night trying to find something, anything, that fit and fashion-wise could be placed in this decade. But my mama’s patio dress is timeless. It never goes out of style because that sucker was never in style in the first place. Well, maybe long ago…

Wow, take away the blonde hair, the shotgun, the horrible parenting, and the philandering husband, and she could totally BE my mom.

Wow, take away the blonde hair, the shotgun, the horrible parenting, and the philandering husband, and she could totally BE my mom.

Speaking of, the main reason I was in Kohl’s today looking for shorts is because, for the weekends, I have decided to participate in the #offTarget effort of Moms Demand Action. The group has been identifying businesses where gunslingers have been showing up needlessly armed to the teeth. And Target has been in the news lately for such antics. At a store in South Carolina, a customer found a loaded gun in the toy section. So far, Moms Demand Action has been able to get Chipotle, Sonic, Chili’s and several other large chains to change their policies about open carry in their places of business.

I love every 48-pack in that place. Costco has my heart, y'all.

I love every 48-pack in that place. Costco has my heart, y’all.

Given how often I’m at Target (hint: it’s more than I’m at church, which is saying something), I felt I could easily give up weekend shopping for the sake of our families’ safety. Still, it’s so hard. We had to buy bedding today and we actually went to the mall for it. The mall! Target is our go-to for almost everything. But, I believe in this effort and it has everything I love in a good protest: clever use of social media, personal sacrifice, and endless pun/slogan potential.

As a former sloganeer, I salute you, Moms.

As a former sloganeer, I salute you, Moms.

Several of my friends who are defenders of a more generous interpretation of the 2nd amendment than I have told me that they find these open carry parades ridiculous. Even the NRA denounced them, but then they retracted their denouncement.

I hope you’ll consider joining me and other citizens in this #offTarget effort. I don’t mind shopping for clothes in a store that has a Pizza Hut in it (that’s actually a win-win in my mind). I draw the line at buying shorts in a saloon.

Barkeep, bring my boy here the tallest ICEE you've got.

Barkeep, bring my boy here the tallest ICEE you’ve got.

Have a great weekend and as Johnny Cash says, don’t take your guns to town.

 

Beginning again…again

June 23, 2014
by

These last few months have been a bit tumultuous for me. I’ve been finishing a two-year term as PTA President at my children’s school, which was a stop-gap attempt at dealing with a painful job loss two years ago. God was gracious giving me that time to recover my confidence, and my convictions, but it’s left me here, once more at the point of “Now, what?”

I’m honestly now sure I’ve answered that question yet. But I’m walking in a direction, and that direction is my writing.

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I started a new blog where I can explore some of my thoughts on social justice and biblical misunderstandings about compassion, mercy, humanity-at-large.

In some ways, I thought that start might help me grow out of my smart-alecky Becky phase, but it’s showing me that I really am the person this particular blog is about. I’m sassy. I’m a mom. I’m challenged by chronic pain from Rheumatoid Arthritis. I’m the perennial weirdo navigating conservative, white, evangelical circles. And because God has made me to be this things, I’m learning to like it.

I have more to say about my life than I thought I wanted to, so I plan on keeping this Becky not Becky thing going a while longer. I’m not sure where it will end up, but ain’t that the way faith journeys usually go? Here’s to enjoying the ride.

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