Here I was excelling in medical school, living my dream, planning my first trip to Africa and having no idea if I would be physically able to continue in a few months, years. I finally found the courage to get x-rays, a kind rheumatology fellow who I frankly owe my sanity to paged me and went over the films with me gently. He talked me into a steroid shot in which a the radiologist furthered my anxiety with talk of strange anatomy and bone density.  I made an appointment with the hip surgeon who I had met several years earlier and wrung my hands as I studied for Step 2, started my residency essays. The visit upset me even though I knew what was coming and gave me the strange transition of me explaining to my anxious mother what the doctors were saying. He gave me another steroid shot that was amazingly effective and I lived with denial for a summer, went to Romania and pretended that everything was ok. Perfected my residency essay, then my peds AI hit me like a freight train and my denial started to crumble.  My first patient died of pneumonia related to muscular dystrophy in an all night vigil of wailing parents and I was reminded of my sweet Romanian friend whose similar death had rocked my world in college.  Our parallel diseases differed in two major ways, there was a palliative yet potentially close to curative treatment for the symptoms of mine and even when I had no cartilage left…I wouldn’t die.  Visions of a beloved elderly patient with RA who had movement in her hands, was going blind and couldn’t get out of bed flashed through my brain…could I live with that reality?  Visions of the synthetic hip failing because of my bone density and knowing that once we took my femoral head they was no going back, if the prosthesis failed, I wouldn’t walk again.  After the on call vigil, I drove home to the mountains then onward to get a steroid shot.

Within in weeks, I could no longer deny it, the shot failed. I wasn’t sleeping now because of the pain.  It was everything I could do to keep the facade that I was just another medical student. I called my surgeon’s PA and cried in the child psych copy room and told her I wanted to do the surgery now.  (yes I had a nervous break down on the pysch floor…fun yes). Things fell into place, the surgeon fit me in (I am sure he was shaking his head thinking finally I was ready a year ago, this girl is nuts).  I passed Step 2, got my first residency interview and with tachycardia to the 120s, lectured my anesthesiologist on the decreased number of DVTs with spinals opposed to general as they rolled me into the OR.

I was a neurotic post-operative patient but I went back to medical school three weeks later, line danced at 5 weeks, interviewed for residency at 6 weeks, Kenya at 16 weeks  and by the time match day came I was taking the steps two at a time for the first time in my life.

I went through a similar period of denial and anxiety although much milder, fought to get steroid shots in Cincy( Part II, Part III). Epic fail, telling my  chief resident was near to the copy room incident. This time the PA tried to comfort me that even though there was a boat load of hardware in the hip, they would figure it out and I would be ok. I nearly lost my insurance coverage, took the Step 3 and then spoke in DC the week before.  By the time I got to the OR I found myself in a much better place than the previous time, believing that somehow the hip would work despite the hardware weakened bone and that I would walk out of this better than ever.  I found myself telling everyone (yay versed) my bucket list of things I wanted to do with two shiny hips (I remember this prior to heavier sedation but apparently I kept right on going although I don’t remember it). I woke up to the news that miracles of miracles the hardware had not prevented them from using the best kind of hip as expected and I had a 30 year lease at minimal. I was texting everyone I knew in the PACU and thanking everyone from the jainator to God for my incredible good fortune.  My family and I survived me with five weeks of unplanned toe touch weight bearing while the hardware holes healed despite a funeral, a mild incision infection and general angst on the part of a sibling.

And I find myself at 5 weeks post op sitting in an exam room across the hall from where this all began three years ago with the visit (see above). The PA comes in and asks me when I am going back to Africa?  She hands me the films with a grin. There they are, healing perfectly. Her optimism is infectious and suddenly as I remember how fragile it all seemed three years ago.I think back though to my first pediatric death and of my sweet friend Laura who died of a similar diseases (dying muscles and connective tissue…I have dying cartilage and connective tissue) and how in some strange way of the disability tribe I feel I owe them, they expect me not to waste this, to live with reckless abandon.

I am overcome by gratitude this time sans versed.  Nearly in tears.  The attending comes in  says my name, kisses my cheek and says “You’re Done!”  He grabs his cell and proceeds to call my pediatric ortho to tell him the good news. (yay for transition..although it was kind of a weird move)  He draws me my “life plan”  which includes one more visit at 6 months, then no more visits for 2 years.   It doesn’t seem real. No more hip pain, no more hip precautions, an inch taller (much to my sister’s dismay) I can throw away my crutches, 6 weeks of PT and then welcome to the rest of my life.

Mom and I drive back down the familiar spine of our beloved mountains, a little giddy despite the recent family sorrow, amazed at marvels of modern medicine, of grace and of the incredible joy of sweet relief and the sweet ability to dream.

Praise God.

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.

I find myself smiling knowingly. It’s not faith healing that our leader is preaching, its wholeness. Its realization that what we see as doctors, as humans is only a small part of what makes a person. The illnesses we seem so keen on fighting are a part of a larger whole. He is talking about how people are never bad outcomes. But as I look at my peers’ expression I shift uncomfortably. I realize that I am once again in the minority. I get this because this is fundametal to who I am, to how I see the world as a wounded healer. To my young, healthy, ambitious peers this is a very hard concept.

He goes further and begins to tip another sacred cow of medicine… He says a word that we say all the time in church but really has lost the luster it had centuries ago: L E P E R. He tells the story of St. Francis of Assisi walking down the road and hearing the clanging of a cow bell. He tried to get out of the way but found himself transfixed to the spot in the middle of the road as a leper with a warning bell around his neck approaches. He talks to the LEPER who is shocked that he is spoken to. As he turns to go, the LEPER turns into Jesus for a split second. St. Francis is brought to his knees.

I have never met a patient with leprosy. But I know about LEPERS.

These are all real stories of real people who I have met who all needed physical healing of some sort but what they really needed was understanding and compassion. Some of them had done things to themselves but most were a vicitim of how they were born, somone’s else choices or worst of all society’s warped conception of their lives.

I took a chance and tell perhaps the least offensive story for my audience (the one about the street child on the subway). At the end I briefly mention some of the other new forms of lepsory that exisit in our medical and wider culture.

It makes us all cringe a bit.

But I think that is the bibical meaning of the word Leper….it was not meant to be PC or assuage our sensitivites it was to call us to radical wholeness, compassion and sharing of brokeness with our fellow man.

The smell of urine,  sunbeams through a barred window, the feeling of chapped hands, the smell of stale bread and boiled cabbage….  These are the things that take me back to being 19 yo, young, idealist who walked down the OTHER hallway at child protective services in Bucharest…

July 13, 2004 (from my journal)

Eerie silence echoed through the long, narrow, gray room. It was frozen in time; the light from the singled barred window on the far side seemed listless, much like the occupants of the cribs. I tiptoed over to the first crib:  there was a heap of brown curls wet with tears, sweat and urine scrunched in the far corner. At the sound of my footsteps, she jerked her head up from her hushed sobbing and looked at toward my quiet steps, scars of untreated infantile galucoma clouded her sky blue eyes. How could a eight year-old know such grief, such fear? I reached down to pick her up:  she was weightless it seemed. I let her down gently to the floor. She stood slowly, her tear streaked face seemed to come alive.  She held my hand with a death grip:  don’t let go, don’t let me go.  She walked with careful steps fearful of the monsters she could no longer see.  At the dark end of the room, another crib had been pushed away from the others.  .I heard the sound of metal striking metal against the rail of the crib. Then I saw a hand and unnaturally slender wrist is covered with red welts and oozing blisters. I peer into the crib and discover the etiology of his suffering. A single piece of cloth encircles his other wrist and the bar of his crib. I gasped, on the sign above the stated this child was 14 but he was the size of a toddler. His head was grotesquely mishapen with untreated hydrocephalus. No wonder she was so afraid, no wonder she grieved. This was not a hospital for disabled children, it was a prison.

I am haunted by these children…orphans…some abandoned because of poor resources, some because they are members of my tribe and their families left them and the stigma of raising a cursed child behind,  some born on the streets, some badly abused and taken for their own safety. But all left in a pitiless system that devalues their potential and slowly teaches them and even molds them (both physically and emotionally)  that they are not worth it.

And don’t this is about Romania or even Eastern Europe.   I could tell stories about the slums of Nairobi where children die of dehydration, HIV and TB and no one cares.  I could tell you about young beautiful African teenagers selling themselves to survive.

And don’t think this is about the developing world either. There are 888,000  children in foster care in the US.   And I shudder to tell you the stories I see every day on the pysch Ward, in the ED of abuse, neglect or kids who have never known a stable environment in their 10 years…who can tell you the top drug lords of their housing project are but can’t find the state they live in on a map….

But yesterday I saw the other side…. White people from the suburbs who I half expect to invite me to a Wednesday night church supper or run into when I shop at the uppity grocery store in uptown who have adopted from China, from Ethiopia, from the Ukraine and yes from the US of A.  People from the culture I grew up in who went to the cultures I live and work in now and brought back a child. I saw one little girl who had just come from China a week ago…she has a clef palate.  In two weeks she had advanced 2-3 months developmentally. In just 2 weeks…. I had tears in my eyes taking her history.     Because I have seen 100s of these children , room after room of babies who get fed and changed twice a day who never learn to sit up or crawl or walk much less talk or interact not because they are not capable but becuase no one holds them.

And I was overjoyed for this little girl…for this chosen one…..  But what about the others…..a 147 million others. What about them?  I found myself wanting to scream this loudly at these parents.  “WHAT ABOUT THE OTHER BABIES???”   I didn’t of course because I knew that I was being absurd.  Its just that while I love the idea of adoption and I think its a beautiful reflection of what Christ does for us…. and I admit I even plan to adopt myself  one day… its a drop in the bucket.

147 million is a lot of drops…

I want to answer the question why babies get abandoned.  I want to be about de-stigmatizing disability/birth defects in the developing world, preventing HIV in Africa, decreasing maternal mortality in the 10/40 window,  changing the way cultures think about little girls, building sustainable economies in nations so that families can keep their babies….

we are called to care for orphans and widows….but what does that mean in our modern world? what does that mean as spoiled, pretentious, well-meaning Americans… ???   I don’t know the answer but the longer I reread the gospel and the more I travel the world, the more I realize that the redeeming, trans formative answers are the ones that make me in my home culture and yes in my home religion the most uncomfortable.

My prayer is that I am ready and willing to look beyond my own fears and my own bias and believe that its possible. TO believe that there are answers and be ready to radically follow my God in search of them.

….147 million

I am sitting curled up in one of my favorite places in the world. The ZSR library on the Wake Forest ugrad campus. Its nooks and crannies and huge windows and high callings have facilitated my studies, my imagination and my dreams for the past 7 years.  It was here I studied for my first real exam EVER, memorized latin poetry, poured over novels, drew out organic mechanisms, took MCAT practice tests, discovered libreation theology, painstaking dissected the New Testament and the Koran and eastern European folklore. I learned EKGs and neuroanatomy on the 6th floor. I learned Rheumatology and Endocrinology over in the new wing.  I dreamed of traveling and medical school and later medical missions.  And like most young women day dreamed occasionally about boys and the future and all that is to come.  This place is full of friendly ghosts that remind me of where I have been, who I am and where I am going. Its not just nostalgia and books that live here but a sliver of my identity and the woman I have become will always find a home here.  Of all the places on the Wake Forest campus I think its the place i will miss the most when I finally physically leave Winston in May.

And that is about to come to a head. Tomorrow it begins.  I submit to the powers that be my residency application. Countless cups of tea, late nights, long hours, books, papers, notebooks, itunes, sutures, progress notes and surgeries.  seven years, six pages of resume and essay, five agonizing standardized board/admission exams, four summers loving Eastern Europe and four babies delivered, three years of med school (1 to go), 1.5 degrees, it all been for tomorrow so I can go get a job somewhere in the United States that wants a gimpy pediatrician to be with a strange love for all things from the Black Sea to the North Pole, a more than passionate obsession with disability rights who is in love with children, Jesus and comparative religion.

up, up and away.

I walked into the pediatric oncology ward today and the first patient I met had a brain abscess of unknown pathogen origin but since she has cancer it could be a very, very bad bug. She was in a room with two other leukemia children one who was questionably neutropenic (no immune system). I was really, really upset. I get the whole limited resources concept. I get the whole this is not America concept but I can’t turn off the little doctor in my head that says this is a way to kill three children for the price of one. We painted their faces and make necklaces and bracelets and it was the only child life (hosp playroom) time these kids get. Their parents make their meals, give them all of their oral meds, wash them, clothe them and do all beside care that does not involve the IV pump. There are no portacaths so the kids get IVs perpetually. I was pretty saddened by the whole thing.

Especially in light of story number two. So ‘Mike’ is 16 and was my bosses’ first patient here back 1994. He has a stricture (a narrowing) of his esophagus. He needed surgery to fix it but he had to grow and there were no surgeons in Romania any way. Finally they found someone to do it after a more than a decade of suffering and being told that there was nothing to be done but wait for death, they found someone. Health care is supposed to be FREE for all children under the age of 18. And by FREE they mean that if you want your child to live the hospital alive after major surgery try a 3000 dollar bribe. That’s more than most families make here a year. And it needs to be in cash and by the way it’s all under the table so the doc will never pay taxes. The missionaries, the boy’s community and his parents have scrimped and saved and raised the funds. The boy survived the procedure and is in the ICU. The only words the surgeon told the mom was the esophagus was dilated before the stricture, we should have done this years ago. The mom has to pay a bribe every time she wants to see her son. 3000 under the table? And the mother can’t even be with her son???? 3000 untaxed dollars in a country where children with treatable cancer die because they can’t pay bribes for isolation rooms.

Don’t get me wrong I know America’s health care system is broken. But at least it is mostly honest. I mean insurance companies are evil but they are upfront about it. I would take truth even it means capitiolism runs health care over corruption running health care any day.

Also this http://www.wxii12.com/video/19854698/index.html watch it… and count the number of time they use the word inspiration or something similar. I know this girl, she is a friend of mine, and she is extremely kind and generous with herself. But I post this because it’s such a good example of America’s idea of disability. I can be a cursed beggar/prisoner of an institution or I can be a poster child for a Disney movie.

God Bless America……and Romania

Good grief. Dear God please tell me there is some happy medium in the world where gimpy people are not martyrs but rather teachers, parents, doctors, lawyers or whatever they want to be when they grow up. And no one finds it extraordinary that they managed but rather find it extraordinary that anyone would think otherwise.

….there are many kinds of freedom, and even more kinds of slavery.

End Rant.

Things are slightly better accessibility wise here. There is a van with a lift to help one get off the plane and lift into the terminal. I actually rode down the whole street today by myself in the green machine, curb cuts the whole way. I almost had tears in my eyes. Such freedom, my people here have never known such physical freedom. I learn so much of spiritual freedom from these simple things. God wants to free us from our sin and our own selfish selves but we have to let him tear down the walls (the curbs) in our life. I think often of my friend who was my initial introduction to the plight of my people who died soon after I met her. I am sad she did not live to see these days but happy to know she is with the Lord. We still have a long way to go education and health care wise, but enviromentally they are making an effort.

God is doing interesting things in my heart. I love this land and I love Eastern Europe. But Romania is chaning rapidly. Romania will need less and less missionary doctors over time. The medical missionaries who run the clinic are thinking about retiring. There is still much work to be done here but I am not sure if this is where God has me to come for the long term. So where Russia? Ukraine? Africa? I recently received an e-mail from one of my future supervisors in Africa he is asking for pediatricians with a passion for the disabled to run a rehab center in Tanzania, they want to start a series of these throughout the continent.  I am going to work in one of them in Kenya in Jan. They were very clear, that my elective is a window to employment, they are almost recruiting me 5 years early it seems. Also on my way here, I ran into a guy who works for Samarthian’s Purse who gave me his card and wants me to e-mail their medical missions dept. It seems possible jobs are growing on trees at the moment…

 

,.,,,there is so much to tell about being back here and about Spain and Italy and France…but it will take me a while to get back to speed with my blog. I am also writing my reisdency personal statement wich is a painful endless process.

Why you ask? The usual reasons things matter in foreign policy: oil, power and blood.  Russia controls a big part of Europe’s oil supply and the oil passes through many of the former soviet republics.  Russia has friends like Iran and China.  Russia is becoming better armed all time and already has increasingly bad human rights record.  I am not suggesting that we as the west should go in and try to mess around with the region and play police or micromanger for these  corrupt, struggling infant democracies but we shouldn’t take them for granted.

Let’s all remember that it was our indifference after helping the Afghans win against the soviets that brought us the Taliban…

not the same situation, but the same principal. The battle for a free whole Europe is not over, its really only just begun.

Contentment is something I struggle with.  Being content with waiting on God or wait on public transport or simply being happy with I have at that given moment. Its so easy to give into complaining or whining about what I wish could happen faster or what I wish I had or what I wish could be different.  There are so many things I want and so few things that I don’t have that I actually I need.  You go to any book store and you will find oodles of books about finding peace and contentment.  And there are a great variety of such books in the religion section alone from prosperity gospel to physics to magic formulas, but no ONE HAS AN ANSWER….

God provides in his own time, his own season and his own way or so we are taught in church.   But how do we learn to wait, to trust. Oswald Chambers says the most important word Christ ever spoke to his disciples was abandon.

What does abandon truly look like?  Can we truly be joyful and grateful for what we have and live in the moment? Can we drop everything and truly live with abandon? Reckless abandon??

So different from what our culture tells us…and in the end I think thats the key. Its recklass abandon of what wer are told to worry about, told we should want and need for instead embracing what we have and what God has for us.

I am not sure what that looks like exactly but I am praying God coninutes to show me.

Over break I went through my medical records (I have my own small archive of films and records taking up an entire corner of the attic) for the first time as a medical student. It was surreal, the words were familiar to me. I speak the language fluently now, grammar, the note structure, the acronyms all make sense. I was looking for my original audiogram (hearing test) and the Kniest diagnosis paperwork.

I had never read the 10 page genetics paperwork fully. Anyone who has ever had any exposure to genetics knows that geneticists are meticulous (I spent a week on it during peds). They look at ever freckle, every toenail  and scrutinize it for answers of what  kind of biochemical diaster you are… I found it, read it, copied it and put in my folder with my audiology stff (hearing aide stuff), letters from the Dean, my high school IEP (plan for accomdation for a student K-12), Wake and my Rheumatologist’s letter. Today I stuffed it in an envlope with a personal statement (yes they require this) explaining my disease, my good standing as a medical student, species, etc. And for some odd reason I felt violated.

I mean the whole thing is ridiculous…I mean would anyone really tell a disabled person they couldn’t take their wheelchair or hearing aides….I mean this exam (which 95% of US grads pass) is one of the tests that decides if I get to be a doctor to deprive me of my hearing aides in particular would severely hurt my chances of doing well. The fact I have to prove to the NBME I need them is just flat out laughable….or is it…see sometimes I forget.

I have forgotten the awkward admission questions, the fact that my friends get rejected because of their disabilities, i forgot the surgery attending who stopped me on the elevator last July to ask how the heck I thought I was going to pass his rotation or the int med attending who stopped rounds half way through on my first day on the service to ask what my limitations were (in front our entire team, nurses, etc) or the peds attending who is a former AAP president who asked me in the middle of morning report what page are YOU on in Smith’s Book (the illustrated peds bible of  genetic syndromes…I am pg 412 (I think)  of the newest edition).  Oh right…I have forgotten I am actually reinventing wheel…

I’m sorry but is it too much to ask to have something sacred here??? Is it absolutely necessary that the people who write my medical liscene have to know every freaking birthmark, freckle and toenail I have???  Do I have no right or privacy…HIPPA applies to everyone except patients who want to be doctors (or lawyers from what I have been told).

and unfortunately its not just the NBME…This week I e-mailed my Rheumatology (arthritis doc) fellow  a question, he is a really decent doc who I really respect. I mentioned my pain had been worse in the past few months on medicine. He wrote me back an answer to my question and then mentioned that my medicine clerkship director (NOT RHEUM) happened to be sharing clinic space and overheard the fellow talking to the Rheum attending about me.  She apparently had a conversation about me with the Rheums, about my work (good, she says) and her sincere desire for me not to be abused on her rotation (good intentions yes).  I know she meant well but if I wanted her to know I would have e-mailed. her .  You know maybe I didn’t need the person writing my medicine grade and comment summary to know the imtiate details of my chronic pain issues.

sigh.

I could go into a long rant about power issues and about history and how such information could be used aganist me by insurance people or yes gatekeepers who have often historically been physicians who made decisions for my tribe without our input. But really its not about that.

I am not ashamed of any of it, I am not afraid of persecution, there is nothing to really hide…I just would like to be a student doctor…who yes happens to use a wheelchair but who mostly just happens to be a  third year medical student who is a decent one at that.

Yes I really would just like to be a medical student.  Why must I keep proving my right to do that?

yes I am a medical student  with a wheelchair, and a big medical file and hearing aides and FLK on my birth certificate.

it time for the world to get over it…I mean at least by the time I graduate.