“….Yes.” I took my project from the pile and walked to my car in the fading November sunshine.  Shivering.

At the time I was 24 year old and slowly and painfully coming to grips with my failing joints and tasting the bitter, raw fear and trepidation of my own fragility and mortality.  I met a lady with RA who was in her  70s, going blind and had no hand function earlier that year and she had shattered any illusions I had of somehow being through the “worst of it” with all my childhood surgeries.  Then there was my 28 yo Romanian friend who died and a year later there would be the 18 yo with muscular dystrophy who was my first pediatric death on my watch.

I savor life differently.  I savor work differently. I savor normalcy like cooking good food,  wearing clean clothes, brushing my hair, going to church, buying my own groceries, paying bills, good conversations.  I savor and fight for weekends with my family, taking that road trip my sister and I have talked about for years even though its expensive,  moving to Africa for a season  I savor them and don’t waste time because I know that my destiny according to society was to live in my parents’ basement and because as anyone with a progressive disease knows, I never know how long anything is going to last.  My new hips could last 30 years or they could last 6 more months.

Its a crap shoot. Its a gamble.  Its anyone’s best guess.

So yes, I get it.

But don’t fool yourself, it doesn’t always make me a better doctor.

20 something yo with a neuromuscular disease that most people die from in their late teens who isn’t eating anymore, in constant pain and at one point last night said ” I want a ventilator, I’m going to die tonight.”  I couldn’t control his anxiety, I couldn’t seem to calm his breathing and I couldn’t seem to tell him the truth which is he is dying.  He knows, I know, his family knows it (although adamantly deny it), God knows it. Everyone knows it. But we are not talking about it.

I get that too.  Because I don’t talk about it either. I don’t talk about what life will be for me when I am in my 50-60s and the hips fail or my  hand arthritis is so bad i can’t palpate babies’ bellies anymore much cook, clean,  drive, etc. I don;t talk about how I sometimes worry about burdening my sisters or if i was to get married with this. And i don’t talk about how much sometimes it sucks and how scary it is to watch your body fail you and become steadily more deformed with your body attempts to grow bone or muscle to support what it can’t repair which is the crappy cartilage all the while when all your friends are having babies and wearing skimpy wedding dresses that show off their beautifully unmarred bodies. How I am happy for them but somehow all the more painfully aware that I will never be like them and my participation in their world is fragile.

I don’t REALLY get it, I don’t claim to know his experience, I ‘ve only had a taste of the feast he has been forced to ingest.  But the taste is enough to know that the other thing is while all of us medical people wonder how WE GOT HERE medically, why no one managed to talk this family into a plan, to know this young adult’s wishes….the tribe part of me that can look into his eyes and for just a moment stand in the abyss with him knows that we are here because not talking is what’s been expected of us, for the sake of normalcy, for the sake of sanity. Talking about losing function or dying young is just not what we want to talk about around the dinner table or even the examination table.  Its not the RIGHT thing to do but its what makes everyone else comfortable.

I wanted so badly to make it better for my patient, I called palliative care, I lingered at the bedside. I prayed.  I whispered to Laura to please care for him when he goes.

Because this is where the pollyanna, cute little kid in a wheelchair, chronic illness, Jerry’s Kids, Life time Origninal movie, inspirational memoir, NICU baby, special olympics thing ends.

This is the hard stuff.  The ugly stuff, the things that keep us up at night, the things that challenge our sense of right and wrong.  But for those of us who live with a taste or with feast of it, its the stuff we so desperately want to not bear alone. Don’t ignore us, don’t pretend it doesn’t happen.

So walk with us….look at us…take a moment and get it. Just a moment.

I lied.

I actually love it. The medicine is acute, fascinating and finally teaching me all the physiology that never quite added up for me in my textbooks.

Second Lie:

I do care about what happens job wise in 13 months. And as I brave as I sound. I have only begun to come to terms with how hard it will be to leave a place like where i work.  I would leave the best all around children hospital in the world, anywhere is going to be a change.  Moving to Africa will be bit like academic suicide or at least feel like it. Above all its kind of scary even though its a dream.

there I told the truth

While becoming a doctor has been the fulfillment of a dream.  Its not the only dream I have. And in 13 months for better or for worse.  I will be done with my required education related to that dream. Thank GOD.

What I want to do in terms of earning money to eat and maintain health insurance in 14 months is unclear exactly. And honestly I have gotten to the point I just don’t care (I mean do obviously I have sent out countless global health applications and tried relentlessly to create my own academic peds/global health fellowship but in the end as long as I get to take care of kids for some percentage of my day to day life, I don’t care the details much anymore).

What I really want to talk about is everything else I am going to do….

I have the following list thus far:

~Sleeping on a regular basis like every night… or at least at some point during the 24 hour period. Beyond being overseas (which is different), I am going to do my utmost to never work in house 24 hour+ call again.

~Finding a church/community that will not stone me for being a pacifist, a children’s/minority/disability rights activist, for thinking women have a role in church beyond raising babies BUT still believe in Jesus….

~On a related note, becoming a part of/forming/etc a Christian woman’s ministry where talk about something other than getting married and raising babies (both of which I would like to do but that I think are not actually my reason for existence (which is of course, glorifying God)).

~I would like to live in intentional community FOR REAL. Not just sort of halfheartedly

~Going back to Romania, find Aurel, Christine and Rapheal. And even if it requires 12 hours on a train, go see Laura’s Grave. Pray there and thank her for the vision she gave me in our short time together. Tell her I became a physician and that I carry her with me every time I speak for our people.

~Going back to East Africa and I would like to take my family with me.

~Live Abroad for at least 6 months but up to forever subject to God, my cartilage and all these other things.

~Writing THE BOOK that I have been talking about for 10 years even if it means I have to tell the truth about how bad medical school was at times

~Spending at least an entire week in the Outer Banks at my Grandfather’s where I eat fresh sea food every night, go sailing with my Granddaddy, losing myself in the Elizabethen Gardens and then waking up and doing it all over again.

~Spending a week with my Paternal Grandparents either on a road trip (they love to drive across country) or at their home. Learn to cook from my Grandmama (again!) and talk theology and writing with my Grandpapa.

~Spend some time with parents. Going on a Father/Daughter trip with my Dad that has NOTHING to do with trying to become a disabled doctor/pioneer/take some nasty exam.  Hang out with my Mom, listen to her and not spending the entirely of time together  with me venting about how much my blank rotation the previous month was the worst thing that ever happened…./her caring for me after some life altering, horribly stressful (for all involved you imagine watching your first born go under anesthesia 25 times+ ) and painful medical procedure.

~Go back to AAMC with protest signs/hunger strike if necessary and say they need to get over their able-ish and put a disabled physician on the committee for disability (GOD FORBID we actually have representation) and be a some what gracious but fierce activist with impeccable credentials (you can’t argue that I am just a med student any more, I will be a board certified pediatrician from of the top programs in the world). (this may or may not be related to the BOOK project)

~GO on a trip with just Emily and Victoria. Even if its just to a Holiday Inn in Vinton (which is like 10 minutes from our parents’ home)

~Go on a medical mission trip with Jessica

~Go visit my friends in Oregon

~See the Grand Canyon (actually going next month a year early)

~Really learn how to cook rather than occasionally dabbling

~Go on a silent prayer retreat

~Write some travel writing type essasys

~Go to Ireland

~Get the Sacred Tuesday Group back together for a crazy retreat/reunion/celebration somewhere (ANYWHERE)

~Help write some transition related stuff for kids with skeletal dysplasia (ok so nearly work related…but I have come to the stunning conclusion I might be the only human being currently alive who actually can/wants to do this)

~Read SMART books that are not about medicine

~Relearn all the theology/religion major stuff that I have suppressed in order to make room for the Krebs Cycle and organic chemistry (worthless)

~Need some sort of theater in my life again beyond the annual Long Family insanity known as MY MOM’S CHILDREN THEATER PLAY WEEKEND

~Figure out my opinion about about the laundry issues of social/theological issues that have come up in the last 7 years that I have not had time to research or pray about fully.

~Successfully plan and care for a garden without having either things die due to neglect or never getting it in all the way due to time constraints

~Go to the San Diego Zoo

~Read all the books on my list (really long)

~Learn to play an instrument (even if Emily says there is no hope for my deaf little ears)

~Buy a hammock, lay in it.

~Go through the phone book of where-ever I am living particularly if its a large city and eat all the different ethnic food restaurants from Albanian to Zambian.

~Make a recipe book of all my favorite Romanian/Russian/British/Scottish/Chinese/Kenyan/etc dishes that I have accumulated over the years from all my travels

~Take a photography class or at least dabble more officially

Longer term goals:

~Get married

~If that doesn’t work out, adopt anyway

~Scrapbook/Journal/DO better keeping up documenting

that’s it for now but this list will be growing over the next 13 months. Stay tuned.

Then I came here i was doctor and no one really ever asked any questions.

and for a while it was amazing. Very liberating. To make matters even more amazing, I had a new hip and was walking more and more and more till I worked my way to a second hip.

Then somewhere in the mist of a new hip…3 straight months of ICU/step down units in the middle of a midwest winter….I awoke from my liberation to realize.

oh crap.

while I do not want to be a primary care doc or a developmentalist or a geneticist….I am gonna be bummed if disabled children are not part of my career personally and professionally.

It took me another month and two weeks of developmental peds and a few very persistent children for me to say that aloud but here we are.

This is going to greatly complicate life.

oh well. here we go. I need a pediatrics job that lets me A. be a hospitalist, B. Teach, C. Go abroad and D. work with kids with disabilities.

here’s to the impossible…

That I appreciate my scars for the story they tell.
That I value the oddly shaped contours of my poor long bones.

That I love the strange angles that my contracted ankles and elbows grace me with.

But I would be lying.

But then again I have been lying a lot today.

All three of my best friends are getting married in the next 18 months.  Today I went to get fitted for my first of several bridesmaid dresses at the infamous David’s Bridal which has never been my favorite.  The dress is sleek, asymmetrical, one shoulder empire waist canary colored gown.  My shoulders have some impressive scars. My elbows are awkwardly angled. All around me are girls with shoulders with no scars, with normal contours.  And for a moment I feel naked, exposed and ancient.

I rip the dress off, buy it (ugh!) and run home. My best friend who knew I was going dress shopping calls me all excited. I try so hard to keep up the level of excitement because its her wedding.  And I want her to be happy.   She nearly drags it out of me, I dance around the issue a bit, mumbilng a bit.  She tells me I can return the dress, I can wear a shawl.  She is upset.  I tell her its fine.  SO FINE.  DOn’t worry about it, its not her, its not the dress its just me.

My disability mentor Bliss tells me  that I should embrace my body and I wholeheartedly agree.

Its the practice that sometimes hard, especially when you are in your 20s and have to wear frequent formal wear not designed for anyone but especially not for bodies that are different than average.

One of my friends here who has Marfan’s and some other skeletal issues has had some “work” done on several scars.  I wish I had her courage, however, the whole starving children in Africa and my intense PTSD/extreme dislike for being a surgical patient rule this out. She tells me either way that my feelings are normal.  I want them to be normal but I also dislike the idea of hating the body I have.

Because in my head I agree with Bliss, bodies are beautiful in all shapes, sizes and with many marks and contours that tell our stories. So I pray God gives me grace to love my body and help others love theirs.

i’m getting married in chacos and capri pants.

OK so maybe not capri pants but chacos and a dress that drapes my shoulders a bit and doesn’t make me feel like a member of an alien race.

from July…although hauntingly still true.

Long ago and far away I spent my summers wandering the streets of Bucharest playing with street kids, finding babies in back rooms of crumbling, stifling Soviet bloc hospitals. These summers defined me and it was here the dream was born to be a really excellent activist and pediatrician who could save babies from disease and from the poverty and stigma that they live under.    Then somewhere along the way I got caught up in a dream to study at a world class childrens hospital and caught up in all the academic rigmarole and danced the dance and sang the songs and won my way into a place that is so far removed from the  that dream that sometimes I still wake up and have to remind myself that I am not living in an alternate universe.

I am bruntout on the alternate universe. I am tired of staying up all night. I am tired of parents telling me they want me touch their children with my inexperienced, tired hands. I am tired of getting e-mails in my box that I only reviewed 9 systems in my review of system rather than 10 and the ED attending can’t get paid if I only have 9 in my note. I am tired fighting to put checks in an imaginary series of check boxes to fit some sort of magical mold that an elite pediatric resident is supposed to fit. And I keep waking up with a start because in my dreams I am doing what I have done every summer for the past 7 years up till this one, riding buses and fighting for forgotten children.   Suddenly in stead of falling in love with academic medicine or fellowship or something will give my pre-existing condition gimpy self sustainable health insurance I am missing as if I have lost my first love. As if we are painfully separated by a dream not deferred but given up and revised.

It was not my pastor. It was a kind man about my parents’ age who is also a bad evangelical who runs an intentional community.  I am not quite where he is, in that I am pretty sure he simply sees Jesus as a moral teacher. But I so greatly appreciated his story, his life and his willingness to listen to my story.

He told me that he had built his career as a missionary and now has very little to show for it because now he has evolved into a liberal that is no longer accepted in evangelical circles.  His biggest advice was to not end up that way. It will be different from me as a physician but still very good advice.

Literally 15 mins after that I sat in a strange yellow room on a sofa saying I wanted prayer for the choices I had to make.  Two things were abundantly clear to me in that moment.  This guy who is my pastor really doesn’t know me so well and well as a result its awkward. And then I also realized that while he and I on paper have similar theology, our application of that theology is completely different.  I handed them my reference form and ran to PT.

So I stand in the middle of these two extremes.  And for now that is ok.  The reality is for now I am a liberal evangelical and I am ok with that.

I like Rob Bell including his new book. (not that new any more.)

Although I don’t think either of them are heretics or the end all of preachers.

I don’t really love Campus Crusade in fact it makes me cringe.

I don’t like George Bush all that much.

Although I don’t think Obama is the end all and be all.

I think women can be ministers. In fact some of the most influential ministers of my life are women.

I dont hate gay people.

I actually have very little in common with other white middle class 20 year olds who grew up in evangelical homes. Who Knew?

Growing up looking different makes you think different. Living in the lowest caste in society for periods of time (Eastern Europe) makes you realize most of us dont get a lot of choice in the cards we get dealt socioeconomically.   Trying to pretend like this didn’t happen to me is like being in high school and trying to fit in. I just can’t do it anymore.

I am not sure what I was thinking when I moved here and joined my current church but I think I was high on the novelty of a new adventure and didn’t read the fine print.  But now 18 months in, I realize, what the heck was I was thinking?

The timing is insane….I am in the mist of applying to mission agencies.  I need references. But I can’t live the lie any more.

So Monday, I am going to try something different, something very similar to the direction the community in NC I was a part of was going.  Its just dinner.  Near my home with people who like Jesus.  People from all walks of life, I can promise you I will be the only doctor although perhaps not the only disabled person.

And I am hoping that I can be a part of a faith community and have some integrity.

As for my references….Im not sure what to do yet. I am praying about it.

Pray for me.

and I panicked.  I am also ill with some RSV like illness.

Suddenly in the last week, I have looked around realized I have it made.

I have a brilliant mentor who has actually succeeded in founding a clinic in one of the most violent neighborhoods in America that is celebrating nearly 20 years.  Not to mention his work in Africa. Not to mention, he actually seems to think I am great.  He is sending me to Malawi this July.

I work at the best childrens hospital in the world. No really….people come from EVERYWHERE to be here.  Every day we have applicants who are interviewing dying to come here. The learning here is amazing, the teaching opportunities are amazing.

Today I went to see my uber boss, to ask about writing a program director letter for me for my fellowship applications.  He hugged me and said “I brought you here….of course I will write you a letter for whatever you want.”

Yes its cold here, yes its on the wrong side of my beloved mountains, yes people here look at me funny when I say “yll” but by golly I don’t think leaving is what I want.

I want to go to Africa but I think if I could have my cake and eat it too. I want to be a fellow from here.  This is where I want to represent.

…..never mind that the fellowship only exists on paper.  And there is no actual money set aside.

I can dream, can’t I…

JANE, another colleague says, “I think BOB got that schedule because he had JESUS on his side.”

I laugh and said, well I go to the same church and it didn’t work for me.

JANE and JOAN stare for a moment.

JANE says, “I didn’t know you were an evangelical”  But she said it in such a way that it was like I didn’t know you smoked or I didn’t know you throw rocks at puppies on the weekends…..

“UM, well yeah….maybe a bit more laid back.” I flounder wanting desperately to explain I didn’t love BUSH, Im a pacifist, I haven’t bombed any abortion clinics, I watch trashy TV sometimes, I read Harry Potter and yes in my less thoughtful moments I use off color words I learned from my naval heritage.

JANE smiles, “Yeah, well I love Bob, I was just joking around.”

Then one of us got paged.

….two weeks latter….

Two weeks later I am out with GABI who I have been friends with for a while but whom I find myself having a series of deep and more personal conversations with.  GABI tells me she is something akin to gnostic. She impressed I know what that means and we start talking world religions. I am holding my own.  Then she comes right out and says it:

“So you love Jesus? You’re a Christian?”

I explain that in all my studies what impressed me the most was the incarnation that God would come down and live as we do to provide a vehicle to get us out of a spiritual life the equivalent of a TO DO LIST which we could never complete  and that its all about the relationship with GOD that we can have through knowing and believing in Christ.

This question was easy.

It was the series of next questions that I found myself sweating a bit.

“So how do you feel about missionaries?” (which is a big question if you look at historically and currently) (or as I like to say do you mean in the JOSEPH CONRAD’s HEART OF DARKNESS sense?)

I start with HEART OF DARKNESS and colonialism and move on down to my own experiences. I end with saying what I believe in the context of a relationship is quite different than the HEART OF DARKNESS sense.  She nods and talks about how Church NGOs do a lot of good.

“So do you think, Christianity is the only path to heaven? DO you believe in a literal hell?”

(these are loaded questions: If the answer is YES and YES you are condemning 5 billion humans on earth today to hell).

I believe in Christ (note that I separate Christ and the gospel from Christianity which is a human construct) is the truth and the path. However, I don’t really know how it all works out.  Only God truly knows people’s hearts and knowledge.   As for Hell, Milton and Dante seem to know a lot more about it than I do because other than a parable or two in the Gospels and some heavily loaded metaphor in Revelation, Hell is not described in detail in scripture.  I know it will be separate from GOD which sounds terrible but in the spiritual sense not so much the physical sense.

At this point, GABI who is also a physician interrupts me and says “When I think of Hell, I think of homeless schizophrenics at war with their selves and living cast off from any sense of human contact.”

I nod, who knows, maybe HELL is like that.  I continue…

As for who goes to whatever it is, well again GOD only knows.   The party line Billy Graham crusade answer is that its a punch ticket kind of thing, you go through the right prayer, life style change or whatnot and you get the right ticket punch. Over the millennium Christians have  made up all kinds of ideas of  loopholes. Babies for example apparently are innocent so if they die, its OK they get to go without a ticket, developmentally disabled people too (a babe in Arms kind of ticket).  These babe in arms kind of tickets are made up, they are not in scripture, we don’t know what happens.  Now, do I honestly believe that God sends babies to Hell?  My understanding of God is somewhat different than that, so NO I don’t believe that. But I don’t how it works.  So do I believe that folks in some dark jungle who never heard about Dante or JESUS go to hell?  My church peers would say that’s on us to some degree for not going as missionaries.  Do I think God will send them to hell?  Again I do not know.  I don’t know what that looks like.  I also don’t know exactly what will happen to all the people pre-Jesus. I don’t know.  SO do I believe people, go to hell, YES but I don’t know who or where or what exactly it is.

As for Heaven, some believe the Kingdom of God will come to earth over time as we build it, some believe we will go to it.  I think the former is ambitious and maybe a bit impossible but I think the Gospels are pretty clear about trying anyway. While I am interested in hell, I am far more interested in what we do now to mirror heaven and spread its seeds in the mud and mire of the hellish elements of now.

I explain as well that while I believe in things absolutely, I live with mystery in my faith, of unanswered questions and gratitude to a GOD who is big enough to be mysterious to my human mind. I live with unanswered questions, with faith and I am OK with that.

My friend seems impressed.   We drank our tea and then we go home.  I think she expected me to start reading Romans out loud and pray the sinner’s prayer and give her a tract.  Because I am evangelical, right?

As I go home that night, I think what would my friends from church say if they listened to this conversation? What would BOB say? What would they say if they heard me admit that I don’t have all the answers?  Would they have done the same?  Some would have, but I think most would have stayed within safety of the party line where we have the answers.  I think they would think that I lost my religion.

Am I failed evangelical?  Have  I gone native in all my intellectual quests of reading the Koran, the Mormons, the Buddhists, the Baptists, the Skeptics and the Gnostics, dissecting the layers of culture, history, human creativity from the raw text, from what we call religion?  Do I believe in nothing because I “tolerate” and analyze everything?

NO.

I do believe in something, actually its quite akin to what I believed when I told my parents I wanted to be baptized when I was five before I knew about all of the other stuff we tacked on to the truth.  I believe in the love of a GOD who would love me even though I hit my sisters Emily and Tori every day and some times wish I could go back to being three when I was an only child.  A GOD who created the trees, the deer behind our house that left footprints in the snow, my cat, the moon, the stars Daddy taught me the names of, a GOD who created an elaborate plan to love me  me despite the my wrongs. The plan included sending someone he loved like I loved my parents and my paternal grandparents (and mostly Emily and Tori), a piece of himself who suffered through annoying little siblings and stuff and in the end died pretty awfully  and somehow in something that seemed at the time a lot like magic came back alive to get the rest of us before he went ON so we could all still be friends with God.

GABI says her husband and I have little girl and boy souls, we still believe the same as we did when we were children.

I would say that’s actually quite biblical and I am OK with that.

What has changed somewhere between church camp and now  is that the religious brainwashing has melted gradually over the Serengeti grasses, my ferocious appetite for books and reading, the wails of orphaned, neglected Romanian babies, long nights of organic chemistry followed by ethics and human rights essays in college and blood dripping off my gloves, sweat and tears running down my face as I beat on a child’s chest trying to save their life, I lost my religion.

And found JESUS.