I am still that navybrat inside. I am still a homeless  nomad always in search of my next adventure. Or so I thought till I moved to the Midwest.  Yes my house was unpacked within 48 hours of hitting Ohio soil.  Yes by the time orientation started I had all my paperwork in to the state of ohio,  been to the grocery store and had house plants. I transplant well.  My family is still  like a moving machine.

But the difference is I am homesick. For first time in my 25 years of moving. I am truly homesick. Its not my parents, its not my school, its not even my friends that I miss. Its the sameness.  Its the culture. Its the manners: the thank you m’am, No Sir, hold the door open for a lady or a baby stroller every day occurrences that I have taken for granted.  Its the sunset over the mts in the summer all lavender and deep blue blending together. And its also the ability to get in my car and be at the ocean in 4 hours or with my grandparents in 4.5 or nearly all my best friends from college/high school and my family within 2-3.  Its the anticipation of basketball season even as early as July.  Its the accent, deep, slow and quick to laugh like a summer afternoon.  Its the people walking their dogs and waving at you while you water your plants. Its the neighbors who don’t need a reason to walk on over and shoot the breeze with when you get your mail. Its the check out lady at the grocery store who tells you about her dreams of becoming a famous artist while she rings up your ground turkey and bananas.

These things leave a hole deep down.  A hole that cannot be filled by amazing ice cream or my awesome, new friends who are just as nerdy and in love with pediatrics, global health and board games as I am or the best farmer’s market I have ever been too or a faith based pediatrics clinic that I get to be a real pediatrician one half day week for the next three years or my cute little emerging church…..

And I realize that I am no longer a nomad.  I have a home.   And its sort of rocks my world.  Because being a nomad is who I have been for 25 years.   I realize that for the better or for worse some time between 10th grade moving to Roanoke and May 17, 2010 graduating from Medical school.  Western NC/VA (very similar although unique in their own rights) became home.  Somehow the southern drawl, the BBQ, the outdoorsy, laid back, sweet tea, banjo music and James Taylor with a touch of class up Roanoke way has taken root and its not going to be able to weeded out by Ohio or probably anywhere else in the future.

It doesn’t mean that I am not glad to be here. That I don’t wake up and pinch myself that I get to learn pediatrics at one of the best (if not the best) children’s hospitals in the world.  Because I am still doing that.

It just means that when people ask me where I am from, for the first time in 25 years…I have an answer.   And it an answer that fills my heart with longing but also a sense of belonging, of being from…

And I think that doesn’t mean I won’t thrive anywhere, that I won’t thrive here, it just means I have a home.

and I didn’t know I needed one.  But I think perhaps I am a bit more whole now that I have one.

We had dinner and on our way home she mentioned a friend of hers, who also has SB was in the hospital and it was her birthday.  It was 8PM, only hour left of visiting hours but who cares. I have of course for 14 more days a pass that can get us in anyway.  We drove down to the hospital, parked in employee parking. I put her in the wheelchair (she walks short distances with a crutch so we had left her chair at home)  and we walked up to Brenner’s. (not to mention that up until about 8 weeks ago walking all the way to there seemed to be forever but with the new shiny hip its no sweat!).

There we were two gimps in the hospital late at night wandering the halls.  We found her friend’s room. I found myself after introductions falling back into the shadows of the darkened room perched up on the counter.  I watched as my young friend spoke words of wisdom and comfort to her friend in the bed. But then the most astonishing thing happened. She began to inquire about her symptoms, her hospital course. She listened in that way they try to teach but really is an art that one is born with. I stayed frozen in the moment both saddened and joyous by the potential in my friend.

Before we left she made sure her friend had her call button, a drink and offered her entertainment. As we walked back to the car I thought about what it means to be graduating from medical school. I know things now. But what I realize perhaps is that the things I know that are the most important I didn’t learn in medical school.   I learned them from my Kniest Dyspalsia in long sleepless nights at AI Dupont just as my friend did here at Brenner’s with her Spinal Bifida.   I told my friend I was impressed with her history and empathy skills. She shrugs it off  as just speaking from experience.

I smile I know that excuse. I use it often.

As I come to the end of my formal medical education I realize that it is not so much the leaving as it is the coming back to my first educators….my tribe…

We are closing.  Its me the fellow and the resident. The fellow talks about how much he loves children and resilient and adaptable they are.  I agree with him and smile down at our young patient so  grateful for her resilience today.  Then the fellow goes on to say that eventually around late adolescence he finds his patients changing particularly his special needs patients they lose their adaptability…they become lost. He steals a glance at my eyes and says Did that happen to you, Amy?  Before I can answer he says ” But you are tough.”  There were a million things I should have said. I should have talked about transition and how hard it is in a world that does not make niches for disabled adults, where there is no health insurance, where adult doctors are terrified of you and you have to go from being a cute, pitiful disabled child to a dependent adult who feels worthless in a world that does not have a place for them. But my pride got in the way….I stood there with my shoulders back, head held high and told him that the way i thought about life was simple I figure out what I want and I figure it out.

He smiles.  I am not a good surgeon. Surgery is right up there with ballet dancing in my world. But these people respect me in a strange way, as if I was a really brilliant surgeon.  Maybe its because I am a good clinician, maybe its because there are just nice folks. Or maybe its because I prove that what they do is worth it. That spending 7 hours on a 7 yo with a disease you have never heard of whose neck is collapsing matters.

The surgery ended and we did one more. Then we had clinic today. One of my Kniest patients came back after two weeks of rehab. We have become friends, I spent nearly every other night with them since they have been here. The little girl has asked repeatably if her Dad can adopt me.  I took her history close to the end, she looks right at me and says YOU WANT SO MUCH INFORMATION, YOU ARE A SPY.  The NP who works with my attending was just outside the room at that moment and tells the little girl that I WAS HER SPY.  Its true….Its true.

I am a spy. I am a spy in the OR from the land of patient. I am a spy in the exam room from the land of doctor.  In both worlds I live but in neither do I fit in entirely. My knobby hands and stiff wrists and tired knees give me away in the OR  and my knowledge and curiosity gives me way in the exam room.

for a moment I felt a little homeless. a little lost. a little in limbo between my parallel universes.

in the end I looked over at my young patient and I smiled.  I am well informed my friend.

Because I know how scary it all it is, how vulnerable and how big the risks that we take with the fragile children that are entrusted to us but I also know how tough we are, how hard we  are willing to fight and how much it matters.

As soon as the last prayer had been said I was up the stairs and curled up in my bed with my laptop.  Kaniksha called, I answered and told her what I was thinking.  She pushed me to just do it. I went to sleep (well in theory), woke up and went to school. I sat there on rounds with this torturous hurricane in my brain. In order to do this I would have to break one of my cardinal rules of AMYHOOD. I would have to admit that I was in pain to the point that I did not think I could function at my job or at my life.  I disliked that idea immensely although my dislike was childish it still hurt to have to say that to someone.  SO I sat there with this paralyzing inner monologue and interviewed little children whose inner monologue had landed them in the pysch ward.  As soon I could steal away from post-rounds work I called the PA in Baltimore and left a short, cheerful sounding message on her voice mail. I slid my cellphone in my pocket with a smile. Sure I can try to change this but the odds were so against it working thus there was nothing to panic about. Three things had to happen: A. there had to be a surgery date in the first 8 days of block 6 (Sept 7-Sept 13), B. I had to switch my ED rotation (the only required rotation thus making it nearly impossible to switch because EVERYONE has to do it) and C. have something I can do FOR CREDIT instead in Block 6.   I walked back to the pysch floor confident that I had passed the test.

The PA called me back within 20 mins. I hid in the copy room. It took effort, more than I care to admit, to tell her the truth. My voice wavered a bit but someone by the grace of God I managed to keep a surreal businesslike manner throughout the whole conversation outlining the various pre-operative studies and labs.  She gave me the number of the surgery scheduler who I called and left a voice mail. I e-mailed student services with a bit of tachycardia.  My fellow interns on the pysch floor sent me home early since I had stayed late the day before. As I was leaving I got a completely random and uncalled for  e-mail from the pediatric rheumatologist. I had talked to her previously in the year about doing a rotation with her. It had not worked out. She had been asked to write a review on exercise therapy for kids with arthrits and myositis. She wanted to know if i wanted to do the project. I could most likely get research credit for it.  I nearly melted right there in the middle of the pysch nursing station.  Not only was a research project I could do from it home, it was a first author publication handed to me on a silver platter no strings attached. As I walked outside of the pysch ward I stared at the deep blue of the carolina afternoon with  my eyebrows raised asking GOD what the heck was he doing?

I ran home, laid down on my sofa, tired from not sleeping and the constant gnawing.  I had tried in route  home to call both student services and the scheduler again both had been apparently gone for the day.  I was fustrated. Kaniksha called to cheer me on. Finally at the point I was almost sleep my phone rang at 4:50 and I bolted off the sofa.  Ms Long the 14th has one opening…does that work for you? Holy… its in the 8 day window. Give me till tomorrow. I called student services at 4:55 and demanded a meeting with the Dean for Friday. I got it.  I then e-mailed my class expecting nothing but knowing I had to do this before I saw the Dean. Can someone please, please swicth ED rotations with me? Five minutes later someone volunteered.   The Dean signed off on my swicth, my research elective/leave of abscence for block 6 without so much as a moment of hestitation, in fact he had already done before I even got there on Friday morning.

My parents thought I was slightly manic when I called them…maybe I was a tad bit crazed. Hi Mom, I having a hip replacement on Sept 14 think you  drive me home on Sept 17?  I explained or tried to explain that for once in my life I was excercising some level of self-perservation.   My parents who know me better than most know that this is not characteristic of me…its far to what normal people with chornic pain do. They accepted it although they had a million questions most of which were medical rather than logistical.I had been the one e-mailing and calling the surgery team with my 20 million questions, I was the one who signed the dotted line on the consent forms.  Now in the surreal change of roles I was the one explaining to my parents what to expect.

I’m still not exactly looking forward to it. In fact I’m still sort of terrified but feel oddly at peace with it for the first time since that fateful day in April where the surgeon walked into the room with that knowing gleam in his eye.

On Friday afternoon I headed to Atlanata to visit with friends (including my super, awesome, talented webmaster) and take the Clinical Skills boards on Monday.  I stared at the peds rheum books stacked on my passenger seat, a reminder of the miracle of the last two days.  It rained as I was coming out Charolotte traffic, a blinding sun shower that slowed the resceding traffic to 40 mph.  I stared into the liquid blue and marveled at God’s grace and his occasional firm, gentle pushes off of our mental mountains of pride and fear. And how well he holds us as we fall into whatever ocean stands in the valley.

¹¹ For he will order his angels
to protect you wherever you go.
¹² They will hold you up with their hands
so you won’t even hurt your foot on a stone.

The passage that came to mind…oddly enough it is quoted by Satan terribly out of context in the temptation of Jesus in Luke and Matthew 4 which was the center of the discussion on the red sofa.

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.

And sometimes things break down.

My computer died this week had to get its hard drive wiped and I had to reinstall all kinds of programs and stuff, thankfully they saved my pictures and my documents and music.

I am jealous of my computer. I wish I could wipe away the clutter in my life, the voices of others, the opinions, the perceptions, the layers, the myths, the mistakes and the perfectionism. I wish I could just selectively choose and have it wiped away. I feel like I am a fish bowl and every one in my life is screaming at me with advice and concern and I don’t know which one of the big distorted faces reflected in my glass prison is not going to eat me.

Dad is yelling at me to stay at Wake where its safe and to be wary of the outside world of medicine where there are no ramps, no electronic medical records and evil administrators who eat fish…I mean gimps for dinner.

My advisors are yelling at me to go for it, the sky is the limit, I can go ANYWHERE, aim high, represent us well they say.

My Dean of Academic Affairs is vocally telling anyone who will listen they want me to stay here (possibly forever…and ever and ever Amen. )

My friends (and my classmates and their significant others) are yelling at me to stop worrying while they themselves daily seem to be begging for anxiolytics, time off and sleep meds.

Two long term adults in my life are telling me to be the doctor that disabled people believe they can’t be.

Disabled people in my life are yelling at me to change things for them.

My doctors are telling me they are willing to do what ever I want to do…just name it. But in their compassionate, beautifully executed, careful, tactful manner they are telling me exactly what I SHOULD do.

My body says its tired and sore and its counting the cost and its sort of like the bailout of the US economy…its getting bigger.

My mind is bogged down by all the voices and the doubt and the exhaustion.

My heart is longing to be free of the fish bowl on so many levels.

My spirit is crying out not for advice or even wisdom but for peace, for stillness, for simplicity.

If only I could just get my hard drive wiped.

In Kindergarten I was put into an average class. I was 4 and tiny. Other than telling my teacher off daily for trying to make me hold my pencil a way that was utterly impossible for my already arthritic fingers I loved school as much as I did the first time. I had lots of friends. We still get Christmas cards from my best friend Joey’s Mom. I struggled a little with phonics but once we all figured out that kids who only hear 50% of the stuff their peers can don’t really get phonics I jumped 3 grade levels in a single year in reading.   I made the transition between the worlds without much drama. I didn’t even know what was happening. We moved to Maryland, so I had no idea that all my friends from pre-school were in a different class.

There is a story that I have no memory of that apparently on the first day of kindergarten some kid asked me why I walked funny and I told him: God made me that way and if he didn’t like it he didn’t have to be my friend and stormed off dragging Joey and some other kid behind me.  Apparently the teacher cried when she told my Mom about it. I don’t remember it.

Now I tell people I have a procollagen 2 mutation on chromesome 12  that leads to osteoarthrits, hearing loss and myopia and I am going to be doctor if they don’t like it they can buzz off.  I never looked back after making that transition. I did well in school after the phonics stuff resolved, did all the honors track stuff in secondary school.  I was the only kid in any of my high schools who participated in programs on both sides of the EC (Exceptional Children) office:  special ed and gifted ed. I had very few disabled friends growing up except for Aaron who lived far away in NYC and the occasional hospital roommate.  I grew up in the average world.

When the internet happened in middle school which led to the Kniest group I started to actually realize that I was not alone. I became very uspet and agnry at the injustice I saw in the lives of other disabled folk. This led to Romania and intense study of disability rights laws and movements. This led to after three years of struggling with saying it…the realization somewhere around the time I was demanding UVA widen the doors of their anatomy lab that I was an activist.

I wrote my personal statement for medical school about how listening to the stories of other disabled people in the waiting room of AI Dupont Children’s Hospital and in the institutions of Eastern Europe called me into medicine and providing high quality health care and justice for my fellow disabled folk. Every school I interviewed at it bought into it. Heck I bought into it.

But you see I am a fraud. I may look disabled. I may walk disabled. I may talk about disabilty. I may claim to understand. But its a lie.

I am at best a double agent. You see I don’t fit in with my pre-school class anymore.  I don’t even fit in with the disabled  kids with average IQs anymore.  Recently I made a new friend. We are the same age, we are both part time chair, part time walkers. Both born with our disabilities. Both live in the same city.  Same race, same religion.  Completely different lives.  She looks at me with awe…I drive a car, I live on my own, I am in medical school, I went away to college, I travel, I cook, I date, etc, etc  She lives at home, she volunteers at the hospital I am learning medicine in, she doesn’t drive and is living off her SSI disability check.  Tonight I met her Mom. I set her in living room and felt flushed. Her Mom talked about me like I was a superhero.  She looked at me like she wanted to use the i-word (inspirational)….

and I left feeling homeless and a little guilty. Somewhere along the way of middle school dances, school plays and AP exams I left my people behind.  I am not sure when I learned about the two classes…but by the time I did I knew where I belonged… I claim now as doctor to get them. Heck my medical school has me give a lecture to the first years about how I get them. Everyone seems to think I get them.  But the secret is I don’t get them.  I find it hard to relate to them. I can understand their medical experiences maybe but I find it hard to understand their lives. And tonight is just example of a wider reality. If you look at the statistics the average young woman with a birth defect or congenital anomaly is not me, its my friend.

I feel like I have become a interpreter for a tribal language that very few people know. I speak gimpspeak and normalspeak.  In Eastern Europe, I have heard westerners lament that they feel they have tainted their translators or friends…they have given them glimpses of another culture and changed them.  I have been changed.  I live between two worlds not fitting into or being accepted in either entirely.

So here I am 21 years after pre-school wishing in some ways that I could go back to when I didn’t know there were two classes. Where I thought that my friend with the brown hair and the big blue eyes was beautiful and I loved her with a undying childhood loyalty. She was  not a diagnosis, not a statistic not someone who I had special insight  into for the betterment of society at large..and to her I was not awe inspiring for my average intelligence or inspirational for my limp or my hearing loss… to us the other was just simply a friend.

10 minutes later and 150 dollars later I have a brown satin dress on order.

Where is the sacred in this strange form of marriage? In all the money we spend? In the party we throw? In the gifts we receive? There is celebration and love of course but where is mystery, the divine in all the fluff. What am I really doing…Am I assisting my friend by standing with her, affirming her commitment, her love? That I think I can do, the rest of it well I dont quite understand. I know very little of these things of love, of romance, of glamor, of marriage . But the glimpses of what I see I find disappointing.

I love my friend and I will do my best for her.

and so I enter into to this strange cultural ritual.

I’ve tried to substitute with American summer staples like ice cream sandwiches and Popsicles. I went swimming in a clean pool with other Americans. I went to the beach a few weeks ago and am going again. I wore a tank top and and read on my porch. I’ve savored air condition. But it just doesn’t feel right. I haven’t spent a summer in America in 4 years. I don’t know what to do with myself.

Today I hung out in the special needs eye clinic. You know you would think that I would love love love American health care with all its technology and solutions for these kids. It just also makes me all the more aware of how much my people in Eastern Europe suffer. Its as if I do not understand their nakedness entirely until I see the full beauty of clothes. The more clothes I encounter the more I am ashamed of their nakedness.

yeah I keep sort of deep down wondering if I will grow out the whole e. europe thing…like if this will be some sort of phase of my life that will fade out like that time I used to sing in the choir. but it seems to be here to stay, it seems to have taken hold in strange ways.

I think I shall make a cherry pie this weekend when i go home.