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.

Yesterday was Grand Rounds and I was post call. It was on chronic pain in connective tissue disorders….NO REALLY it was.  I slumped in the back, ate my oatmeal and hoped that sleep would overtake me quickly. It was all fun and games while the geneticist gave an explanation of connective tissue disorders. Then the rheumatologist went on about Fibromyalgia and JIA.  I drifted in and out. Then the psychologist got up to talk and went on about chronic pain and patients (our) poor quality of life.  And how much they (we) feel persecuted in the hospital when they come seeking meds and how they pass up activites they would otherwise enjoy and then how there is a higher rate of suicide. They went on to talk about new research studies that were ongoing looking at day hospital treatment for chronic pain. and cognitive therapy.

I sat there in the corner in my imaginary white coat (I never wear one, it scares kids) and shook my sleepy head at this. Its all fun and games until someone misses the point.  Maybe part of why we have a higher rate of suicide and “poor quality of life “is not so much our pain but the medicine we use to treat it. And medicine in the literal and larger sense.

What if instead of taking our chronic pain patients out of society and out of school to be in a day hospital program, we find ways to help them engage in life? What if instead of giving narcotics like candy to our sickle cell population, we tired alternate methods or we at least stop complaining about how they are addicts because WE (the doctors WE) gave them their addiction!! What if we stop trying to make pain less depressing and find ways to make life more worth living? What is our goal, be pain free, or be living our lives?

I agree grand rounds friends, chronic pain is a mind game.

But its some what clear to me that you have never played.

Chronic pain is a series of choices.  Difficult choices. Defining choices but choices never the less.  Every day you wake up and you decide what rules today?  My life or my pain?  Do I fit my pain around my life or fit my life around my pain?  You can tiptoe around on eggshells and slip and fall or you can run and not look back.  You don’t choose to live with pain but you do choose to live to the fullest. TO live with joy. To live with gratitude.

Doctors, all the study show we are actually quite bad at understanding what “quality of life” means to our patients so maybe we should listen to them.

I rolled my eyes and my wheels and took my poor quality of life upstairs to rounds and helped save some lives. Then I went home, had a mug of tea, a long bath and a nap. I woke up and read a book, went to bible study, came home and finished the book.

Like I said me and my poor quality of life…..

I am among a very friendly, although intense community of young physicians who inspire me and challenge me.  They also want to do things like a be a pediatric heptatologist when they grow up or a palliative care/hematologist/oncologist or be a cardiac ICU doctor.  They are impressive and are being groomed to have impressive careers.  Occasionally I get caught up in the mist of it and try to play the game  but win or lose I find myself looking down at those streets and thinking about how different my life will look in 10 years than nearly every other graduate of my program.  Sometimes I don’t know how to fit my career goal into some sort of acceptable academic mold. (Although if I was really trying to FIT IN maybe I would give up the TIE DYE t-shirt collection on call…and actually WEAR my white coat).  WHen people ask me what I want to do with my life….the expression on their face when I say global health doctor is something akin to shock or a sad smile as if to say “We’ll see how long that lasts….”  Then there are my recent attempts into the array of ACADEMIC global health which is just like what it sounds…. a complete paradox. So far it also seems like a mess….its like combining developing world bureaucracy with academic medicine bureaucracy which make s system that makes Africa time look like a New York minute and Eastern European bureaucracy look like excellent customer service… In T-minus 24 months I am supposed to have a plan. I am supposed to live the dream and all that jazz. In a year I need to be turning in applications for either EM or a mission agency.  This is it…this is what I want to do with the rest of my life…but who knew the rest of my life was only 24 months away and who the heck knows how to get there….

Then there is the typical double agent-ness.  Although its been a really good year in terms of my life as a patient. Its a calm before a familiar storm.  The steroid shot is buying me time.  How long is yet to be determined but if I have another winter like this past one I don’t think I will want to go through a third.  So despite the fact I haven’t taken the green machine to work in two weeks, I know I am simply riding a false high that will eventually bottom out most likely sometime like the middle of PICU or worse my first month as a Sr in the ED and force me to come to grips with despite two years of magic I still have a chronic illness and I am facing another life altering 6 months of a massive surgery that will most likely per usual live me with a hgb of 7.5 followed by mild hysteria over how can I work 7 days a week and go to PT 5 days a week and keep my health insurance….so that I can pay for the monstrosity and live to tell about it.  Its most likely going to happen before I graduate.    I may be the doctor now but that does not give me a immunity. I also cant help but occasionally despite how different here is than back home in terms of patient/family care….chiming in with the other half of my life on rounds….and finding everyone staring at me like I have three heads when I suggest we introduce two of our patients close in age and with the same type of cancer…. FOr the love….we can get their parents’ premission first…I am not crazy I just happen to have be a agent from the light side (for we all know that the doctors are part of the DARK SIDE )…on second thought I will go back to updating discharge summaries….ignore me I just work here…

I also have  a new house that will one day have a garden and already has a roommate and a dog. The house has big windows, nooks and crannies and secrets it seem that hide amongst its 100 year old walls. Its also a minutes walk from a little Square where there is several cafes, coffee shops, a post office, a library and  a small park with fountain.It reminds me of being in Barcelona or Paris with the square, the occasional street noise reminds me of Bucharest  but my big back yard, my trees and my big windows remind me of North Carolina (the 80 degree weather is helping too). The history and the big porch remind me of my beloved Virginia mountains. Its a prefect blend of my favorite places. For the first time since moving here for residency, I feel like I have a home and am not merely camping waiting for my life to restart again in three years.

I sing of your mercies…..

But I was a good girl.  I made inquires and I found a surgeon right here in town who not only has experience with the injections but has experience with transition cases due to some special interests in perthes etc.   So I move around my life and manage to get an appt yesterday fully prepared to get the shot and be back before my clinic started.  He walks in, comments ” Your left hip looks fine (because a  hip replacement at 25 is totally fine). Your right hip has some deformity and arthritis (YOU THINK?) and yes I can do the shot.”

…in the OR (which means I get to pay for the OR TIME)

……at 7 AM (heart of rounds)

……..and you need a physical (another hour of missed work and ITS A SHOT I am not getting sedated and I AM 26 years old and other than ortho issues I have never been sick a day in my life…I never even had so much as a pneumonia)

………..and you have to come see me “post-op” (and yet another hour of my life)

:::Look of disbelief:::

“I don’t know how your doctor did it but thats howe we do it, its cleaner, more space for the fluro arm. “

(Cleaner…for the love its a shot like a vaccination…lets not make this melodramatic  and SPACE FOR THE FLURO ARM…we have them in the tiny little ORs in Kenya, ok you don’t need much space)

I tried to plead as a resident for a better time….no one seemed to care.  I tried to plead as a 26 yo to waive the physical requirement…he says anesthesia is who makes that call (BUT I AM NOT GETTING ANY BECAUSE ITS just a shot).

it was an epic fail. Failure to understand where I was coming from, failure to understand that the purpose of this procedure is not to relieve my pain ultimately but MAKE ME MORE FUNCTIONAL AND MISS LESS WORK.  Failure to understand that maybe OR time + three doctor appointments would max out my insurance’s patience and put a hardship on my little post-grad budget.

so in the end I am settling for pain patches and an appt prior to flying out to Kenya in Baltimore with a surgeon I trust who will not charge me up to a 1000 dollars for a shot that if I had a fluro arm I could do myself.

heck maybe I can just sneak down into the fluro room at work….at 3 AM no one would notice.

just kidding.

Just keep smiling. Just keep smiling. Just keep smiling. Just keep smiling. Just keep smiling.

Fall down. Get up. Fall down. Get up. Fall down. Get up. Fall down. Get Up.

Welcome to the world of chronic illness. It a series of failures…I mean victories.

You go from sailing above it all filled with gratitude and in awe of the normalcy of your life. You marvel at the beauty of being able to get through your day with ease, without pain or torture or a series of endless decisions that will alter the course of your life.   TO scraping yourself off the bed just hoping you can make it to the bathroom without falling over or depending on the situation passing out/etc.    Some times the fall is a slow slide where you can igore the signs, sometimes its a cliff that you fall and find your hurled to the bottom of the canyon.    You can try to find something hold on to cushion the fall or let you sit on the hill for a little while waiting for the land slide.  You become an expert at denial and justifying away the signs because the last thing you want to do when five minutes ago, an hour ago, last week, two months ago you were living at the top in the glorious glow of what life should be is admit that its back or that you are here again standing in the canyon or half way there looking up at the rock face you have to climb back up.

There is nothing in this world as humbling as the human body capacity to fail. and lack of human ability (particularly that of individual involved) to control it  I would know….on multiple levels no less.

Fall down. Get up. Fall down. Get up. Fall down. Get up. Fall down. Get Up.

I watch it. I live it. I study it.

You would think that after 26 years I would not wake up feeling like I just lost my best friend when this happens but I do. I feel isolated, lonely, anxious and at times a little frantic.  Frantic to be able to predict what happens next and frantic to do whatever I can to get back to the top and pretend like I never had to come back here to the bottom.   And then I feel ashamed even though I know its irrational. I feel ashamed to be in the way, to be less than a 100%, ashamed that somehow I again was not able to make it work even with all the efforts somehow in the end I still failed to hold on.

Its irrational, its futile and no one talks much about this stuff in medical school but in the end to me its the defining experience of chronic medical problems.   And sometimes in the other half of my life, I look into the eyes of sweet children and I see there just below the surface a longing to be free of the cycle or at least be allowed to talk about it…to confess it.

For just a moment they want to not be the hero that everyone around them applauds them for being or not be the withdrawn or the demanding kid with behavioral issues, for a moment they could just be allowed to say they are tired, that they are weary of the procedures, the plans, the protocols and the exercises that are required of them and just for a moment be allowed to choose sanity and scream and wail and say THIS REALLY SUCKS.

and then be allowed to move on.

so yes world having no hip cartilage sucks.

having no hip cartilage and working 90 hours a week really sucks.

having multiple joint replacements before I turn 30 or have a REAL job sucks.

and that my friends is a victory.

saying it out loud.

Key sign that my intern mental health might be fraying.  I think I am reaching the breaking point.  I wish Kenya was next month.  I need it to remind me why all of this is worth it.

What I am drowning in:

• See Previous entry:  choosing between my fading passion and what I actually enjoy….and am building passion for…find freedom in not being defined by my differences but not losing who I am in the process…small stuff really…
• Its February, its snowing and icing and I am done with it.  Its not going to be past freezing today.
• My right hip is on the cusp of dying and I am ok with it, at least more ok with it than last time. I have confidence in my surgeons. But my schedule is a night mare and because I am not a 100% WHEN I want to do it so I don’t know how to go to the chiefs. Plus admitting to my bosses is harder than admitting it to my friends. We all know that last time I end up admitting this with tears rolling down my face in the psych copy room. Yeah I suck at admitting weakness.  Not to mention that even after that there is the question…can I do this living alone in OHIO???  My support network in NC was huge and varied.  Nothing technically ever happened  that required roommates to intervene but is really safe to live with the risk of not having anyone… but how to I place an ad on Craig’s list…HI I need a roommate to be there when I get a shiny new hip so if I fall and do something crazy someone will be there to pick up the pieces…
• I feel like I suck at my job which is mostly not true but my burnout is not  helping my morale or my confidence.
• I miss home….yes I am falling back into the 8 yo away at summer camp mode.  I dream about being back at Wake, I miss the intimacy, I miss not having to explain things and more than anything I miss my friends particularly their diversity in that many of them are not doctors.
• Speaking of which I MISS MY CHURCH even though it  doesn’t exist as I knew it.   I miss the freedom, the lack of formalities, I miss eating bad Mexican food every Sunday.  I miss doing life with SACRED TUESDAY, the small group we created without any guidance but out the desire to know one another and laugh at life and the questions we didn’t always understand.  I miss being able to curl up into the corner of the coach and just be or occasionally cry as long as I needed to about the dying patient, my dying hip 1.0 or the joy of it all.
• I feel like I am missing out.  My sisters are both living at home right now one because she is doing a her student teaching and one because well she can’t handle college away.  NOW I KNOW that I pride myself in my independence and I do. But  I love my family and its hard to talk to them on the phone and listen to them all hanging out and laughing while I am here in 20 degree weather by myself in OHIO looking at erythema toxicum all day (it  is a completely benign newborn rash that is meaningless).
• I miss Romania and this above all is the most futile.  I know I can’t be a doctor there. I cant get excited about Kenya in April or Zambia vs. Cameroon vs. Togo for next year. Or even the Ukraine….I just want to go and sit in a corner in a crumbling hospital building that I have memorized every inch of with a scarf over my head and hold a baby and not care about his erthema toxicum even though I know eventually would miss the medicine right now its killing me and I just want to love children without having to analyze their every freckle.

Now I have to go to work.  But there is the list as it stands.

Vacation  was surrealy beautiful….I ate well, slept well, was loved well. I was surrounded by beauty of surroundings, of relationships and immersed in a pool of acceptance and grace.  I gorged on the ease of knowing people so well that I didn’t have to work at it. Then it ended.

Internship in comparison is cold, painful and harsh.  I am back to being so tired (and i am pre-call) that I can’t make myself cook or go out because I am spoonless, cartilageless and a little blue. Its dark when I go work and dark when I come back. Its gray outside the window inbetween.   I am living off of canned goods and fantasy novels and my 1001 places to go before you die calender.

Please help me reconcile my two lives.

Love,

Amy

For the first seven months of my life,  everything would have been a blur.  My first Christmas was when I was 2 months old. My favorite place to be that year was under the tree with the room lights dim.  My Mom tells me I would sit there for hours.  Sometime I still like to do this. In the dark without my glasses I cannot make out anything more than shadows, but lights shine like glowing orbs.  Christmas lights on a tree or in the case of my little poor starving resident flat around my window are many glowing orbs together  each moving slowing as my poor eyeballs try to focus and cannot. Together making a beautiful piece of abstract art that never gets old.  Light in my darkness, in my blindness.

Light.

Of all the things Hallmark, Matel and Wal Mart have done to the Incarnation, they got one part right despite of themselves: Light.  You can call it X-mas , you can call it pagan, you can  cite all the good Egyptian and Greek mythology that went into the choice of Dec 25  and and never mention Christ but if you are transfixed by the lights, you are closer to the heart of Christianity than you know.

The story of Christ’s birth is dirty and dark, it might be rated R.  Its about poverty, oppression, sex, near-stoning for adultery, a dangerous journey, child birth in cave with animal dung with no birth attendant, its about smelly, poor outcasts having visions of angels (bet that went over well with the religious authorities…can you say pysch admission?) and then it ends with the  flight of a young family back into poverty with the wails of mothers holding the bodies of their murdered sons who were unlucky enough to be born in the wrong year echoing in the night.  Its not cute. Its certainly not a children’s story.  Its raw, its painfully human and really its rather uncomfortable.  I mean who is excited about worshiping a dirty, smelly baby in a cave with animal dung whose parents are oppressed religious fanatics who everyone thinks is crazy. Its really not surprising that we gloss over it or create simpler, easier to contemplate stories of grace like a St Nicholas (a nice guy who gave out presents to poor kids a couple of centuries ago), or Dr. Seuss.

Despite this its my favorite story in all of Christianity.  Not because I like presents or pumpkin pie or vacation…This is the story that sets Christianity apart from every other world religion.  This is the story that ties the narrative of scripture together.  This is the story about the light coming back

Light is something that cuts across religions and pagan traditions but it clearly claimed by Christianity as a symbol of not just hope or prayer or even wisdom but of God himself coming into the world.

What other faith has God having such a human experience? God comes in human form in ancient mythology and in some Eastern Traditions but never in such a humble, dirty, R-rated form.   Then there is the light…In the beginning there was light that is how the bible begins and for much of the Old Testament we see human beings searching for the light, testing the light or completely missing the light.  They live in darkness most of the time and no amt of human striving can seem to ever fix it.  So then first  long anticipated he prophets and then in the gospels the light of the world comes to earth to be the light for the people who can’t seem to find a way out of their wretched darkness.

so light a candle,  a luminary, or hang a string of lights.  And let it shine in your blindness, in your darkness and realize in our raw, horrible at times human experiences on earth rather it be poverty, the brink of war, homelessness or oppression-grace and redemption arrived amongst those very circumstances.

let there be light.

Its a buzzword.  We all seem to want it but we don’t seem to know how to create it. Tonight I sat in a room with 20 other young women most of whom are new to Cincinnati and they all expressed the same desire to  be in community.  I too say that what I miss the most about NC is sense of community.

But what is it that is missing… I have people. I have friends. I have stuff to do in my free time. What is it that I am missing????

Community is not having to worry about how no product seems to flatten my hair, its moving over a pile of folded laundry so you can sit down on the sofa and tell someone about your day,  its listening and loving the new project or piece of music or art or dish that someone has created because you can see so much of the person in what they did, its not having to explain the 30 pages of back story that lead up to the event of great significance  that you are bursting to share with another human being,  its sharing a meal and doing the dishes, its the place where you can go and ask questions and have doubts and not feel ashamed and sometimes even find the answers, its a warm bed and cup of coffee in the morning on short notice, its not where everyone is like you but it is where everyone accepts you, its the good night hug from a 5 yo, its bad jokes that were not that funny in hindsight but with the people and the time and place was hilaro9us and still is,  its a prayer that is not just a prayer but an embrace of empathy,  its the people that when a medical catastrophe or life catastrophe happens: you lie on their coach or on their shoulder and cry for a little while they make you dinner or sit in the ED with you,  it sitting in the back of a big van and singing off key Broadway for 11 hours. Community is not just the touchy-feely-summer camp-kum-by-ya-campfire kind of gush of love. Its also messy. It means getting vulnerable before people, before your God, it means sharing  tragedies and failings. It means picking people off the floor after they fall from a height. It means  being there in the dark so that they can remember the light. Its also yes the people you fight with the hardest and the most but you also find a way to put yourselves back together,  community is not just your friends its the people you live and share life with.

I have come to a startling and somewhat depressing conclusion that there is no magic formula of team building exercises or awkward ice breakers or sharing of life stories/testimonies/etc that creates this.  It is not made, its born out of experiences, hardwork and time.   Real healthy,  community is rare.  But once you had it…you’ve had it.  You don’t want the cheap stuff from Wal-Mart.  You want the pricey wine.

In the end everyone wants it, its biblical, its human, its a need, we are all searching for it.  There is joy in the journey especially if you found the end before because you know it exists.  You know community is not just a buzzword or urban myth. It exists, its real and its vital to understanding ourselves and understanding God.