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Showing posts from 2011

Crohn's costs more than money

I'm sure it's not just Crohn's disease...most of the things I'm itemizing are probably things most people with a chronic disease have felt. In all fairness, it's only been four months since I've been diagnosed ("only"? It seems like a lifetime some days)and maybe some of these things will change or become easier, but I can't see that now. And some of the things you can't put a price tag on are the hardest.

1)I have less time with my husband.
Because he's been picking up odd jobs to pay for my meds, I see less of him. And he's more tired when I do see him.

2)I'm never going to feel pretty again.
Seriously, I spend three times as long as I used to getting ready in the morning, just to feel normal. It's not just how I feel-I was going through some photos my husband took from a recent day trip to Charleston and I look...colorless, dull...like a dead fish really. "Like butter spread out over too much toast" as our friend…

When everything changed.

Six years ago today...

It was a few days after I'd arrived at my parent's home from college. I carried with me a purple sticky note with Scott's phone number. I missed him, needed to talk to him, sensed that he needed to talk to me. But I had responsibilities- family and picking up my job at the wretched grocery store around the corner. I sold cigarettes and beer, was yelled at by customers and ignored by my managers, my breaks were skipped and I worked late.

Things were tense at home, to say the least. I found myself teary in the bathroom, a razorblade digging into my skin, searching for rest and quiet. Blood flowed, and with it a measure of calm as I cleaned it away and rejoined my hectic family. I tumbled into bed that night exhausted, certain that I was alone and failing at everything. Scott showed up in my dreams that night, and we talked. I don't remember much about that dream...just that we talked, I laughed, I cried, I tried to hold onto him and he faded away,…

Schism

I am Anglican, and proud to put my roots down into this tradition. It is the branch of the Church where I belong, the heritage that shaped my thoughts and imagination before I knew its name. There are few things more precious to me than those things that are central Anglicanism- Worship focused on meeting Christ in the Eucharist, the via media, a willingness to admit that not all pious beliefs (e.g the Ascension of Mary) are necessary for salvation, and a resistance to splintering over theological nuances.

There are few things that hurt me more than watching Anglicans rage against each other. It is excruciating to me that I can't even use the term "Worldwide Anglican Communion" anymore because so many of us AREN'T in Communion with each other....that we have begun to split hairs in determining who we are willing to break bread with, that we have started attacking each other. I'm not sure where *I* fit in this dizzying landscape; I have friends who are a part of …

Grad school doesn't sound so bad.

It's finals week, and I've just uploaded my second-to-last paper. I've spent the majority of my days just writing the past couple weeks and it hit me....

If some ambassador from the future had told ten-year-old me that "One day, when you grow up, you're still going to be in school. You're going to get paid to go to school, and you'll get to study whatever you want. You'll spend most of your time reading and writing about things you choose yourself and think are important" I probably would have thought this was a pretty great deal.

And it is...at least the part of the time when you're not completely malnourished (since you haven't had time to make it to the grocery store) exhausted (since you have bizarre nightmares every time you sleep) and crazy (due to the malnourishment, exhaustion, and stress).

I don't even know what to say about this semester. It's been hard. Starting a marriage, starting a a doctorate, and starting life as …

When healthcare reform becomes personal to you

...you start forgetting that for a lot of people, it's not personal. Or, at least I do. I catch glimpses of the Republican primary candidates campaigning on repealing health care reform and I wonder "Why do they hate sick people so much?" I see the occasional facebook post bashing "Obamacare" and screaming about being penalized by "having to pay for someone else's life choices" or all the rhetoric about "personal responsibility."

And then there's the conversations about drug companies- the "we want to encourage innovation" business.

It's become really hard not to be hurt by it. I've started wondering why this country hates sick people so much. Or, really, why it hates sick poor people. And why, since the US hates sick poor people so much, why it doesn't make it easier for poor people to have a medical home and access preventive services so they'll be less likely to get sick.

I suppose just by making thes…

What if Christianity worked like public health?

In his homily today, the bishop said "Evangelism is one hungry man telling another where to find bread." This basic statement triggered a series of flashbacks to my Baptist church evangelism days (which merit their own post. Gosh,there are a lot of things I'm not proud of. But it made me wonder...what if churches(and other Christian organizations) went through the same steps and procedures outlined for public health interventions? I have a lot of ideas about how this might work, and I want to take some time to bounce some of them off a priest-friend of mine who is actively planting churches.

But the main point: in public health,our goal is to make communities places where it easy to be healthy. What if, in Christianity, we aimed to make churches places where it is easy to love Jesus? I don't mean haphazard trying, I mean systematically following an established process.

*Disclaimer*: Chaos reigns in plenty of public health ventures too- often due to having insufficie…

The alternative to breaking noses

The alternative to breaking noses: a blog post about STUPID things people say (or publish!) about inflammatory bowel disease.

Counter to typical practice, I'm not citing these,because I don't think it's good manners to point fingers.

1)You might be gluten intolerant.
Do you want to SEE the photos of the ulcers in my colon? It's pretty disgusting. I get that food allergies are a big deal for many people, including some with IBD. I'm not one of them. Oh, and food sensitivities generally don't need surgery, or steroids, or immunosuppressants or....

2)Often, if Crohn's patients are not hungry, it's better for them not to eat, because it gives the intestine time to heal.
(In all fairness, I understand this one a bit better). I weigh 115 lbs on a good day. I'm always hovering right around the low cutoff point for normal BMI. If I don't get some sort of nourishment,particularly protein, my body is not going to be able to maintain normal functions, l…

Something.

Image
Falling back on youtube videos, since I can't think clearly at the moment.

These both have something to do with my Belize work (which I seem to have committed the next four years of my life to. Pretty excited about that.) and something else to do with feelings about living in the U.S. at the present moment.






That is all.

Gratitude

Perhaps someday gratitude might become forgiveness.

My alma mater broke my heart over and over again during the four years I was there.On a bad day I might contemplate whether or not this was an abusive relationship, though most of the time I know that's an exaggeration. That place left me questioning my sanity and certain that I was failing horrendously at being a Christian, a student, and a woman (and I will never come near their ideal of that mystical intersection of scholarship, femininity and faith).

But I've been digging through reports lately (this one , for example). And I'm remembering that Christian college I resent so much has sent spring break mission teams to Belize. I don't remember what those teams did, and I'm fairly certain I don't actually know anyone who took those trips. But I'm hopeful they did something good. And it's possible that someone, somewhere, who works(worked?) for that institution or graduated from there loves Belize as…

Sigh.

I don't want this corner of the internet to be solely about my disease. But there's something safe about this little monologue, and it seems to be worthwhile to try to package my thoughts into a conversation, one-sided as it is.

Honestly, I don't want to admit that Crohn's disease is a big deal or that it changes my life. Enter Episcopalian Mom Former Boss telling me that "Denial is not just a river in Egypt." She's right- and she wouldn't be that blunt if she didn't love me. I have a chronic disorder that can be downright dangerous if not managed properly (my new favorite potential complication: sometimes in Crohn's patients, ulcers can burrow into blood vessels in their colon and cause hemorhages), and it's not going away. But at the same time...I don't think she's right. People with Crohn's disease have a life expectancy close to that of the general population. I'm fortunate to have one of the milder forms of Crohn's…

Thoughts

It's one of those days when I'm tossing thoughts around like darts at a target, wondering if the connections (commonalities?) I see in them are real.

And today it's this odd sense of things happening at the wrong time. The right things, sometimes the right things done the wrong way, but just the oddness in the timing.

Part of my thoughts are around this conversation : http://rachelheldevans.com/ask-a-gay-christian-response . It's remarkable how many of my facebook friends (from widely varying convictions and backgrounds!) have posted it. And it's a great conversation, and I think Justin and Rachel (and/or whoever is moderating her blog) have done an amazing job with it. But why now? Where was the grace at Bishop Robinson's ordination? Where was the willingness to listen and dialogue then? I'll out myself here- I'm a clergy kid, and I will ALWAYS side on giving grace and respect to pastors/shepherds/priests/overseers/ term of your choice. There are few…

Our new normal

Which is still rather abnormal to us.

I got married in July, started my doctorate in August, and was diagnosed with Crohn's disease in September. That's a lot of new beginnnings, I guess. And really, there's just something beautifully ironic about being diagnosed with a chronic disease that is aggravated by stress and causes fatigue at the start of a demanding doctoral program. Well done universe!

I'm adjusting....or not, depending on the day. First bit of  good news in a while came yesterday- the contrast CT I had to undergo Tuesday (when I learned to NEVER go in for unfamiliar medical procedures alone- ugh) came back clean, which means the disease is just in my colon (Crohn's colitis) .  It's hard to know what this means moving forward. In the words of one person I've talked to this week "We never manage to balance. Life is always a juggling act, and we have all these balls - our career, our relationship with our partner, our kids, everything. And oc…

Horror

A recently tenured young professor at my university (not in the school of public health, but in a closely related area) was stabbed to death by her boyfriend this week. News reports indicate that she had confided to her friends that she was "worried" about him. In this state (or perhaps county, I'm not quite sure of the level of the regulation), you cannot get a restraining order unless there's been a previous incident...well, it's easy to see that sometimes, like in this case, you can be killed in that first incident. This state constantly ranks in the top 10 for most  murders of women.

What will it take for this to change? It's a widespread, heartbreaking problem. I have ached as my former students have told me about the violence and abuse they've experienced from their former partners. These young women inspire me in so many ways- as African-American women, as single parents, in having the courage to leave violent relationships and fight for their educ…

Admittedly....

it's a little scary. What started out as a normal visit at student health turned into a referral to a gastroenterologist, and perhaps a cardiologist, depending on how the nurse practitioner feels at my next followup visit. 3 appointments later, and all I know is that no one knows what's wrong with me. It's been a week of tests, and there are more to come. That first visit at student health I weighed in at under 110 lbs, for the first time since 8th or 9th grade. I've been sick for a long time, and it's probably been a month since I've slept through the night. I want to be well, but the simple approach of "rest, and let my body fight off whatever this is" is obviously not going to work.  And, y'know, when a doctor says that what I thought was just me aggravating a high school injury looks like rheumatoid arthritis to him, well, that's scary too. Particularly when he follows that statement up with a barrage of tests he wants run, including one t…

Sickness

This is my momentary pity party.  I'm presently facing a rather unpleasant health challenge which has culminated in: two trips to student health this week, a round of antibiotics, 4 separate bloodwork orders (3 trips to the lab), and a trip to a specialist, who tentatively scheduled me for a colonoscopy next week (about 20 years early). I'm exhausted. I have 100s of pages to read, writing assignments to complete, and students to find service learning placements for.  It feels completely unfair to get hit with this at the start of a demanding program, when I need to be building momentum and making progress (and getting things out of the way before the semester becomes completely unmanageable).

If you know me in real life- please keep this bit of information to yourself. I've shared it with exactly: 2 classmates/colleagues, 1 friend, and 1 family member (in addition to my husband). I'm trying to not turn into "the sick girl," especially when new doctoral studen…

decisions

In January of 2009 I moved here and enrolled in an MPH program, in Health Promotion, Education and Behavior. I didn't really have a clue what I was doing, except that I had to do something, and it had something to do with this. I was scared, unfunded, gutsy, terrified. Social science wasn't an easy transition. It's fascinating, and I love it now, and I think "heath decisionmaking" will ultimately be the one overarching theme through my body of work. But at the beginning....I would have told you there was no objective way to measure things like that, and people who thought they could describe/influence those processes were crazy and arrogant. I vaguely remember saying that "qualitative research" was an oxymoron - that qualitative work was the necessary, preliminary work people did as a precursor to real research, which is controlled and experimental. When I started, I didn't know what would happen, how long I'd stay, what degree I'd get (MPH,…

Irony

I'm in the kitchen, spreading basil from the pots on the front porch onto paper towels to dry in the oven (my hope is that by starting to harvest + dry basil early, I'll encourage the plants to produce more, and there will be enough to share with my husband's mother and grandmother) and hovering over the washing machine, to dump vinegar (fabric softener) in as soon as it hits the rinse cycle, while my husband is assembling the particle board "organizers" we picked up at Target. After perusing thrift stores in the area, it became clear that our graduate student income wouldn't stretch far enough for secondhand furniture.

We do our best- cloth napkins and cleaning with vinegar and baking soda. I've successfully grown a couple herbs for cooking, and removed pretty much all phosphates and sulfates  from my daily hygiene routines. We don't cook with meat- not so much because I don't believe in eating it (though I do believe everyone should incorporate …

Reading

I've finally gotten around to starting a couple of the books on my to-read list.

Animal, Vegetable, Miracle: A year of food life, by Barbara Kingsolver
"We're raising our children on the definition of promiscuity if we feed them a casual, indiscriminate mingling of foods from every season plucked from the supermarket, ignoring how our  sustenance is cheapened by wholesale desires."

Episcopal Women: Gender, spirituality and commitment in an American mainline denomination, edited by Catherine M. Prelinger.
"Religion, in every important respect, is a game for men, and men make the rules. Changes in perceived power have to do with power shifts among white men. What is suspect here is not simply the exclusion of white women, and minority women and men, but the conflation of leadership with the entirety of the church. Conclusions are drawn, which indeed may be accurately inferred from the leadership, but say very little about the power and preference of those in the p…

Our Wedding

It's hard to figure out what to say, or what even needs to be said. And somehow, it seems frivolous to spend so much effort, over the course of 7 months to plan JUST ONE DAY. And again, to spend that much money on JUST ONE DAY (that being said, I know we had a relatively short engagement and low wedding budget, and I'm very impressed with what we were able to accomplish with that. But still).

I can't say the day went like I expected. I can't even say that I enjoyed most of it.Y'know, during the 7 months leading up to my wedding, I can't say that I pictured staying up til 1am the night before making flower arrangements, or driving to the church with 160 sunflowers and some greenery in tow at 8:30 the following morning, or all the frantic setup that happened. For probably about 3 days all I heard was my name being called incessantly , and boy, for it being "my day" A LOT of people had A LOT of opinions about things I needed to rearrange. Sometimes these…

It is good.

My husband is showering....I'm sitting here at the laptop, nibbling on lindt raspberry truffles and sipping a bit of sparkling white wine, trying to figure out how to manage our drive back to South Carolina, and plotting a half-day trip to Richmond. It's been a good week for us. Choosing to come to the Chesapeake Bay was brilliant- I don't have *one* home, I triangulate home from a number of places I need to go fairly often - the Pea Patch (my mother's family's farm in CO), Shawnee, OK (where my dad's parents, and my grandfather's parents are buried), Belize, and MD. It's an ever-changing list, but it works. And the sight, sound, and feel of the Bay is always greatly soothing to my soul. It's been a time of rest for us, so terribly needed (The morning after our wedding, I woke in the wee hours, and couldn't get back to sleep thanks to the mess moving and the wedding created in our apartment. At 4AM I crawled out of bed and started cleaning compu…

news-ish

Had a productive meeting with adviser last week She found me money to finish up my Belize project well, and to provide support/make connections for service-learning projects both in a class that she's teaching and a course that's being taught by another professor, who I don't know personally, but would like to (she's brilliant, works on amazing topics, and is incredibly personable and confident/outspoken, particularly given that she's a young PhD and a minority. But I guess if you're brilliant, self-assurance eventually follows?). Adviser is also discouraging me from teaching until I'm done with classes, because it's such a timesink. Absolutely valid, though I have a feeling I'll find myself adjuncting summers when I'm not taking classes (and probably some when I am - need to eat).  Also good conversation about how the areas I focused my masters' work on are productive, growing, and there's interest in them (which is important for me gra…

Little Gidding

Maybe the thing that keeps me Anglo-Catholic is that T.S. Eliot is so ingrained in my soul that I hear his words cascading through my thoughts as they begin to converge into something that starts to make sense (Note: that's not the thing that keeps me Anglican- that has more to do with simply being unable to breathe when I step outside of the bounds of the Church of England, as odd and Provincial and Uppermiddleclass and White as that sounds).

And in  the end of Little Gidding (itself the ending of his magnificent Four Quartets), Eliot somehow manages to hit one of his most bewildering, obscure, truthful moments:

What we call the beginning is often the end
And to make and end is to make a beginning.
The end is where we start from. And every phrase
And sentence that is right (where every word is at home,
Taking its place to support the others,
The word neither diffident nor ostentatious,
An easy commerce of the old and the new,
The common word exact without vulgarity,
The formal wor…

Beauty, Epilogue

This article fits somewhere in my musings about beauty, body image, food, and what religious traditions that espouse fasting teach young devotees. It doesn't really provide any answers, just a picture of people living with these issues. And maybe that's enough for now.

and still...

I don't yet know what (or how) to think about Greg Mortenson. Nick Kristof's column was thoughtful, at least. And I love his title..."Three cups of tea spilled" sums the whole thing up remarkably well.

There are a host of voices out there- those who are wholeheartedly on Mortenson's side, claiming he's been unjustly framed by accusers who should be using their time to focus on corrupt politicians. Those who claim to have known he was a phony the entire time, and that the rest of us are hopelessly naive. These two groups are the loudest, and the people in the middle, except for Kristof, who's voice is powerful enough to be heard (aside: Nick Kristof is possibly the best example I can think of of a privileged individual who uses privilege to empower others) are drowned out, likely because of that uncertainty.

And honestly....all the fury in the media and blogosphere makes me more lost and confused. And dumb- how come everyone else is always so convinced abo…

humanity - depravity or frailty?

Two degrees ago I started blogging - as a place to throw half-formed emotional musings I wasn't sure how to process otherwise. Putting things out into a world where you're dying to know you're not crazy, but don't trust the people you know in real life to come to that conclusion. I try not to do that anymore. But right now, this is how it is.

Because of the odd mix of devastation,betrayal,suspicion, hope, sympathy, and fear swirling around my head and heart thanks to Greg Mortenson. Or- more accurately, the media storm around Greg Mortenson.

Monday AM I logged into Facebook to see Nick Kristof linking to a NYTimes piece. And then there was CBS, and finally, offering some faint hope for redemption, Outsider Online.

And maybe it's just a mark of how young I am that I've never been devastated by a public figure before...I was a middleschooler who was raised to despise the Clintons, Jimmy Swaggart and Jim and Tammie Faye Bakker were well before my time also. But Mo…

Beauty, Part II

I'm hesitant to share much about my students in a public forum- mainly out of respect for them. But it seems worth noting that eating disorders and beauty were one of the things they couldn't leave alone. I can't even count the number of response journals I read saying "I never felt beautiful, because I was too thick/skinny/whatever," even from the stereotypically beautiful girls in my class. Which makes me so incredibly sad, because my students? Not only are these girls gorgeous, they're tenacious, insightful, smart. Maybe I'm a little biased because they show up in class on a cold, rainy Monday for a lecture on cancer- but maybe that's precisely my point. I've taken them tough places with this class, and they've been more than willing to go, and to look at how their lives play out surrounded by the tough issues- including how they look at themselves.

And...I'm realizing now how responsible we can be for how other people perceive beauty,…

Beauty: Part 1

So, it's taken some time to manage some quiet moments when I can write about this, and I'm not sure I can pull my thoughts together completely, but still.
One of my friends and mentors guest lectured in my class about eating disorders.
She showed this video which is pretty terrific, btw.
I has response journals due that week, and I got overwhelming responses from students. An athlete who had been pressured by his coach to lose weight. Students who had watched family members struggle with eating disorders, students who always considered themselves too thick or thin to be beautiful.

We later watched Naomi Wolf's The Beauty Myth (since the school's copy of Becoming Barbie was too damaged to use). The book was published in the late '90s, and Wolf's thesis is that whenever women achieve major gains in society, the ideal of beauty becomes something almost unattainable, in order to undermine the power of women. Her examples: The right to vote, followed by the Flappe…

Thoughts on teaching

I'm a third of the way through the semester, and teaching is starting to feel a little less like being on heroin. Seriously...I think about it ALL the time,and there is NOTHING like the high when things go well in that classroom. Or the crash when they don't.
We're settling...we've made it through the first exam. They laugh when I say nerdy things in class. I've learned many of their names, and some of their personalities. And this group of 38 young women and men...they light up the room, with their passions, their insecurities, their trust, vulnerability, laughter.

Today we talked about HIV/AIDS. I was tired, they were tired, but we thought and learned together...and talked about female condoms and dental dams, and some of them got a little squeamish.

I can't even start to explain how much I've learned about myself, and how I feel about undergraduate education. Lately I've been appalled remembering literature from small liberal arts colleges "I…

Keep your students...I love mine.

After a bit of agonizing, I chose to bring this piece to a lecture on Maternal Morbidity. I wasn't sure whether it was the most appropriate choice, given that I teach at a large state university, and in general, I don't think my students have the same issues I do with trying to reconcile God, Justice, and the Church (let alone the apostolic succession). At one point I said "If I were teaching this class at [institution I have a B.S. from] I would absolutely use this, because I think it's something relevant, that needs to be discussed there.

Which suddenly made me realize, again, how awesome my students are and how much I love them. A realization that was accompanied by a flashback from a postaccredidation chapel, in which the college president said "All these visitors raved about our students, and asked what they could do to get you guys at their schools. And I said 'We're not giving our students away. Sorry."

I'd imagine that the typical student…

Epiphany

My new discovery: there are few things that will teach you as much about yourself and what you value as teaching and planning a wedding.
There's something about limited resources (time,money,students' attention spans in my cases) that forces you to realize you can't have everything. Which leads to pondering about why you want those things.

And you wonder...why you care about the things you do. And lots of times, there are really good reasons. You wonder why those things aren't important to everyone and if you're crazy.

Then you see the light at the end of the tunnel and take off over the desert. Not sure how it's all going to play out, but you've got a couple friends with you and you're smart enough to ask for directions.

Which is how the Magi did it. So maybe you're going to be okay too.