For the first time (because I have been here since I left home at 17) I am transferring all my medical records, finding new doctors and making sure I have all the checks in the boxes before I transition up to my new place in the world.  Its a comedy of errors.  I e-mailed the peds ortho folks at Childrens about where to go as an adult with Skeletal Dysplasia (SD) fully expecting a list of adult doctors. Instead I got the clinical geneticist working me in next month to the TRANSITIONAL SD clinic that see adults with SD at Childrens. Initially it bothered me that I would go see the doctors at work considering what happened here. But I figured this was such a good thing…right I mean they know all about my disease unlike other adult docs and its one stop for ortho/rheum/general medicine/PT.  One of those cool, trendy, state of the art inter-disciplinary, holistic sort of places.

I have been going to the doctor and gathering records all week to fax to this new doc.  Today I nearly had a melt down.  I had made an eye appt a month ago…they are extremely hard to come by.  I get there and turns out instead of the resident clinic I have been placed in the optometrist clinic.   In theory most medical students can see the optometrist but  this medical student has connective tissue that makes a tissue thin retina that may  rip itself to shreds one of these days.   Tomorrow is my last day of school and I am leaving the country the day after graduation.  So for the first time in my life I flash my ID and say YOU HAVE TO FIX THIS RIGHT NOW.  And they do because I am almost a doctor and I looked like I was going to cry.  They put me into the walk in emergency clinic. I walked back to the waiting room wondering why am I so unglued?

I go up to medical records and am greeted by a somewhat bored and dour clerk who seems seriously put out about the fact I want four years of records copied and released to me.   Why does this all have to be so difficult?

I packed all evening filling my boxes with dishes, glasses, pictures and books and pondering.  I then went downstairs and while I was folding my favorite pair of fuzzy pink PJs pants I had a moment of shocking clarity.   I DON’T WANT TO BE A FREAK SHOW ANYMORE.   Yes my doctors here don’t know Kniest Syndrome from RA half the time and its great. Because they do know medical students and fractures and chronic pain. They don’t parade me in front of every student, resident and fellow in the tri-state area.  That’s what I remember about being a child and going to the doctor being a complete freak show.  (never mind that in Feb I lived the dream and worked for the freak show as a medical student).  I like the anonymity of just being a young adult patient. I like that internists are not squealing over some weird genetic disease. I like how we solve my problems as a team because I know more about my diagnosis than they do. I know that’s bizarre and ridicilous but its true.

But its time of course me to suck it up and be grateful that I have the chance to have access to such good care and know that while the medical education system makes me feel like a freak show as a patient it is how I got to this point as a doctor.

Its a give and take situation.

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 were impressed.

-first you were born

-then you learned how roll over and crawl (although you only combat crawled…tisk, tisk)

-then wonders of wonders you learned to walk.

-then you grew up

wow.

Despite your chronic illness

-we were impressed

-you got up this morning

-you brushed your hair and put on clean clothles

-you got to work on time and were engaged in activity

Despite your use of a wheelchair

-you can drive a car

-You can carry your own stuff

-you can play sports

-you go out and do fun things

Despite your disability or as the ED puts it “health setback”

-you showed up

-you did all the requirements

-you were professional

-you did everything your peers did

-including doing better than average on the exam

Acceptance is very simple it will happen when society realizes that its not despite it I did this or because of it I did this…

Acceptance is… I do. I did.  I will do because I am a human being first and foremost.

Because I am sort of a global health nut and because Dr. B who happens to run the medical school likes me I got asked to go to the OTHER GLOBAL HEALTH DAY and speak.  OTHER being code for where we raise money for the new global health program. It was in the medical school board room.  It should be noted that I had to ask directions to the medical school board room. It should also be noted that my two compatriots were in suits.

The table was set  formally. It had ALL THE DIFFERENT TYPES OF FORKS.  There were three.   3 forks!!! 3 forks to raise money for people with no forks.  It dripped of old south. We had sweet tea with lemon to drink, three courses, key-lime pie and a waiter for the main table who was quite sadly one of three African Americans in the whole room. There were name cards.  I set next to Dr. B at the head of the table.

Most of the attendees were older than my grandparents. . They were retired physicians, people with foundations to their names. And there was me staring down at my forks in my kanga wondering how bizarre life is.  And thinking that I felt more at home in a Masai hut made from cow dung and mud drinking chai with flies than I did in this room in the heart of  my school, in my country.

I spoke, sat down and pondered about trying to describe this scene  to the Kenyan mothers who had braided my hair and trusted me with their babies. What would I say?   Well a bunch of rich white people got together and ate too much so other rich white people could go and take care of babies.

They would stare and laugh. And say doctari nywara your country is a strange place with strange ways.

and I would say.

ndio ndio.

April 2006…I was a basket case. I had a broken arm, a bad case of seasonal allergies and I nearly died in a car wreck (Mom and I were 20 cars back from a 4 person fatality on our way back from Cincy last week). For those of you who knew me the last month of my Senior year. I apologize.

Here is a sample just to prove my point and set the stage for those of you who did not  (UVA nightmare, I make a list, The list gets longer and I decide on Wake and have the craziest week of my life thus far.)

So today I walk into Senior Seminar in my business casual: laughing, talking with all my friends about my new condo in Cincy, vacation, how lame these lectures we have to attend for three weeks are and how dumb it is we have to have it the big auditorium where there are no computer plugs (which  means if you are awake you have to listen to the lecture).

My broken arm is healing and is doing so well I can go without any padding on the elbow. I can wear contacts again after a week of terrible allergies.  I even managed to get my hair to lay flat for once. I almost look like a semi-well adjusted young professional. Maybe, just maybe I could pass for a doctor. The first lecture was actually sort of awesome. It was about what to do if  on a plane and they come over the loudspeaker and say “IS THERE A DOCTOR ON BOARD?”    I TOOK NOTES.

yeah I know…I should have seen it coming. But there I was there like a sitting duck confident, ridiculously happy and completely for a moment unaware that I was about to be betrayed by something I hold incredibly close to my heart.

The next lecture was on the new procedures curriculum.  It was led by two ED attendings (one of who was chief among you can’t graduate in less you suture at 4AM with a broken arm posse). Our class were the guinea pigs for this new curriculum. We read some modules and tracked what we did. But had no real requirements. But those who come after us…they have to pass a test to show they are proficient in procedures. This will be a GRADUATION REQUIREMENT…. I had heard rumors of this but I had been reassured that this would not happen like this.  My happy bubble got a small hole.  You see this isn’t about me…..

I can do most procedures. They are not my strong suit but I can do them with a little extra time and grace. Heck I can suture and do joint taps with a broken elbow! But I am an exception in the land of disability. I can stand for a while. I can get out of my chair. I have relatively minor hand issues. But for someone in a chair, for someone with hand issues or a visual impairment or even a more severe hearing impairment this could be the end of their medical school career at Wake.

My happiness made me brave. I went up after the lecture thinking well I am untouchable at this point. I got into a first rate peds program and am graduating.  Oh how wrong I was.

Dr. ED 1: Hey you passed the ED!  (he thinks this is why I am coming up to see him little does he know he just made me braver).

Oh great! I say. SO I have a question for you guys.  What happens if you have a student who has a more severe disability than me and is a student here?

Dr ED 1: Well we accommodated you…I mean sure you took a extra time and well your work was not always the same…qual..

Dr. ED 2: Not the right word.

(no joke)

Um this isn’t about me. This is about future students at this school. For example if a student like JL who graduated here after a spinal cord injury in his third year what would you do?

Dr. ED 1:  We helped JL…he went to some PMR program in Texas. Not sure what happened after that.

(no he didn’t, it was in Charlotte after Wake int medicine rejected him because of his disability)

Actually he is an attending now and running a spinal cord program and doing some great research. But this isn’t about him either. What would you do if you had a student who could not perform these procedures in the traditional way? What about intermediaries?

Dr. ED 1:  Obviously there are some students who just can’t be doctors.  And we here at Wake have decided these procedures are required for graduation. You have to be able to do a physical exam with out an intermediary and the same with these procedures.

(WE HERE AT WAKE….WHEN DID WE  GET INVOLVED….becuase my Wake…my Wake I chose over UVA.  Because UVA had technical standards that included a list of procedures, was downright clueless, admitted me for fear of a lawsuit and had no accessible classrooms! My Wake told me that they wanted disabled students, they wanted doctors who were going to serve all people and include all voices. My Wake told me that I was an asset not a burden. And this was such a compelling story that my parents gave me early inheritance so I could stay here. My Wake that I have gone to the AAMC (American Assoc of Medical Colleges to talk about TECHNICAL STANDARDS and spoke in glowing terms of my experiences and used as a model of medical school working for students with disabilities….When did my WAKE ….when did WE decide that my tribe wasn’t welcome here?)

So do you think that this should be part of admissions criteria (technical standards)?

Dr. ED 1: Yes.

Have you been in touch with the committee on technical standards that rewriting them? (I am a consultant for this committee)?

Dr. ED1: No, no  but you know I will e-mail Dr. BIGSHOT today about that.  And thanks again for being a part of the procedures curriclum pilot. Oh and congratulations.

I walk away. I don’t fight. Even though every fiber in my being that was so happy, so confident wants to fight, wants to scream. I e-mail Dr. BIGSHOT who happens to have written a letter of rec for me and thinks disabilities are neat….I think…. I tell him I am concerned.  He e-mails me back a two sentence e-mail about looking into it.

And I leave feeling…… GUILTY.  I know that is crazy.  But I am the ambassador here for my tribe.  And I wish I could have not broken my arm under Dr. ED’s nose. I wish I could have sutured better. I wish I could have done chest compressions on a 3001b man with one arm. I wish I could been sharper on adult medicine last month. I wish I could have done something, anything to convince him that WE (as in the TRIBE) have a right to be here. And that doing things differently even in medicine is not a crutch…its just doing things differently.  But more than anything I want to know where I went wrong in that after eight years….HOW can I still feel like I am fighting for a place at the table. Fighting for the right to be able to stand up and say I am a student here too and my school actually is not afraid to admit it….

and I just have one question left what was the congratulations for?  For becoming a doctor? For being the last medical student with a disability admitted to this school?  nope I think I know.

after eight years….more money than I care to admit….countless hours of studying….of dreaming….of cheering….of singing your praises…. you have finally  made a cynic out one of your biggest fans.

Congratulations Wake Forest. We did it.

(at least until I find a way to fix it). (you know in the next four weeks…before I graduate and leave and will no longer be that awkward thorn in their side)

STOP. STOP. STOP.

For just a moment I would like to bask in the moment that I am done with school for all intensive purposes.  Other than three weeks of casual lectures. I am done with medical school.

No more exams, no more adult patients, no more surgery rotations!!!

and now that moment has passed. now we move on to whats really important when you graduate from medical school at 25…becoming an adult.

A real one.

I am bad at it.  For starters…life has been prolonged series of camping trips since well birth…  I go somewhere, I sleep there for a while then I move on. I don’t know what color I want my kitchen or what kind of slip covers I want or where one even really goes to furnish a house… When I imagined myself as a grown up…I imagined a small soviet bloc style apartment or small falling down African house/flat filled with a lot of ethnic art, books, photographs, doctor stuff and stock piled peanut butter in rubber maid containers next to the rubber maid containers of Gideon bibles (in a language that only i speak) and buttons that misguided yet well meaning churches send me and I use as coffee tables. Eventually there will be a husband and kids smooshed in the tiny, tiny flat  too.  I have no idea how to set up house in America especially as a doctor. Apparently doctors are very respectable and have color coordination and matching hand towels. Why didn’t they cover this in medical school?

Insurance…well I have been uninsurable off of my parents’ insurance up to this point. All I know is insurance companies hate me because I was born gimptastic.  There are now like mutliple plans that all cover me now because I have the title of doctor and I work at Childrens.  How do I choose? What’s the difference? Can I just barter brownies for hip x-rays? Is that an option?

Money…never had any of my own…ever.  What little I did have to my name I spend on plane tickets for “camping trips” and food. I have no idea what one does with money that does not go to eating…apparently  one goes to IKEA and buys sofa beds…thats what my Mom said to do.  Then there are taxes and my student loans according to my Dad eats up the rest of it.

Well I have been an adult now for four days. I think I am done. I am ready to retire.

1. I will be a DOCTOR. No really I will be a D O C T O R. Its not that I can sign all my own orders. Its I HAVE TO SIGN ALL MY OWN ORDERS. I am ultimately responsible for real live children. (ok so yeah I will have back up but seriously I am the person who gets called first….do I really know what to do when some kid is not breathing well or has a seizure or tries to die at 3 AM….)

2.  Every time someone in authority over me at school introduces me these days they say this is Amy she matched at a premier pediatrics program.  Every time they say that I think to my self…HOLY BANANAS.  I am going to be a D O C T O R at a place where all my peers are going to be ridiculously smart and probably know exactly what to do when a kid tries to die at 3 AM and they are on call.  They are also probably AOA (smart, smart med student honor society) and have cured some childhood disease to get in. Basically I am not the brightest crayon in the Wake Forest Box…but in the new box I am going to be surrounded by a LOT OF BRIGHT CRAYONS.

3.  I am a big crayon in the Wake Forest box.  I am not trying to sound arrogant but its true. Everyone knows me because I the only gimpy med student, because I have been here forever, because I give lectures about disability to all the underclassmen, Because I bring back cool pictures from far off lands, because the Dean of Academic Affairs and the Dean of the Faculty like me (because I am the only gimpy med student).  I am going to a place where I will be a very small, very dull crayon.

4. Everyone I regularly rely for support and spend time with is not coming with me and 90% of them won’t be here when I come back to visit. My friends are scattering to the four winds.  I am leaving my family behind as well.

5. I will not have a roommate next year barring divine intervention.  This will be a HUGE adjustment.

6. I am moving somewhere where it SNOWS and I have to get up at 5AM and scrape  my car.

7. I am going to be q 4-5 for 8 freaking months. Will my joints will handle this???  I have no idea. Honestly, what the heck was I thinking? Why could I not be content with some small peds program somewhere with 4-5 months of call as an intern. Why do I have to be so freaking Type A???

8.  Panic…panic…panic….

9. :::intense desire to hide in the tunnels under Wait Chapel and just not graduate:::

10.  Whats the dose of epineprine if my kid tries to die at 3 AM???

:::::Frantically searching for Pediatric Advanced Life Support Book:::

Do you know how hard it for me to say those words? Do you know how hard it for me to say I FAIL.  Failure is not an option.  I look back at this year and more than any other phrase that is what echos FAILURE is NOT AN OPTION.  My hip is bone on bone at 25 in the middle of my residency interview season…failure is not an option…not matching on time NOT AN OPTION.  Yes because I would lose my insurance but more because I don’t fail. I especially don’t fail because of my disability.  I go back to school 21 days after total hip replacement, I lose my crutches at four weeks. I am rehabbing and going to medical school full time and I am exhausted and I can’t see straight I am so tired. But I got up and drove the 5 to 7 hours to go interview all over the Eastern Seaboard. It hurts to sit in the car for so long, it hurts to walk tall and straight and unassisted but I can’t appear more different than I already am.  Failure is not an option.

Its the middle of December there is a snow storm brewing one of my most important interviews is the next day and my cell phone won’t shut up. Its a top ranked peds program that somehow figured out that I was part of a computer glitch and my invitation to interview got eaten. I drive like a mad woman to beat the snow till 1AM.  I am 7 interviews down, flying from Texas the day before the interview and it the interview will be my 5th in 7 days. But I take it. Because failure is not an option. (oddly enough I matched at the almost didn’t happen interview location)

I get snowed in and reschedule my last interview on the day I fly to Kenya because failure is not an option.

I get to Kenya and discover that my day to day life involves walking uphill quarter to half a mile daily.  I am 16 weeks out from total hip….it hurts.  My manual wheelchair never leaves my flat. I have hourly muscle spasms that radiate into my back. Failure is not an option.

I commute 30 minutes both ways for a month in Delaware in four blizzards no less.  I stand in the OR for countless hours.  My attending shows disdain for the wheelchair and my messed up childhood pysche and pride keep it in my car. Failure is not an option.

So when I broke my arm a week into my ED rotation, four days before match day. You better believe that I forced them to push the surgery up so I could not only match with my class but make all my ED shifts.  Failure is not an option.

I matched at Cincinnati Children’s! A ridiculously good program but does that make me relax?  No it does not keep me from killing my self with one arm to suture in the ED or kicking myself for not being good at it?  Does it see me asking for special treatment in the ED because I can’t use my manual chair with a broken arm? Heck no.   Failure is not an option.

But you know what. It is an option.  Imperfection is not just an option its inevitable.  I am not invincible.

I can’t think straight at work and I feel like my A-game is weak and bleeding.  And you know what I am human. And yes I am human with a muscloskeletal system where failure is not just an option its the status quo. And you know what there is no shame am saying I just had surgery less than week ago, I still have stiches in my arm and honestly I am tired and a little frazzled and not on top of my game.  SO please don’t mess with me, don’t give me grief, please just be gentle with my wounded pride and my shame at saying. I am failing to be a 112% today. Please allow me some….

Grace.

Those words might not mean much to you. Maybe you hear them often, maybe you think them often. Maybe you find these words trite or cheesy. But these words have so much power in hearts of young women with skeletal dysplasia or craniofacial syndromes.

I have a lot to process from 4 weeks of skeletal dysplasia.  But this I think was the most important thing.  We have replaced circus side shows with reality TV. But almost morbid fascination and fixation on being little or being funny looking has not changed, its only be rewoven into the politically correct fabric of our culture. We as doctors care compassionately and encourage patients to live the best lives they can.  But inside do we still secretly subscribe to the side show theory? Do we also secretly enjoy being a part of a tight community but would be disappointed if our children turned out to have a role in the side show?   I know what our culture thinks. But what do I think as a physician?   What do I think as a giant dwarf with midface hypoplasia, kyphosis and knobby joints?? D o I think little and funny looking is beautiful????

The answer may seem obvious. To answer anything but YES is to deny my own self.  But in the back of mind I begin to dissect away the layers of how I approach my double life.  The glistening, scarred but sacred layers of my childhood filled with the joy and the pain of being different but also the irresistible knowledge that comes from seeing the world through the eyes of difference. But the pristine, orderly, tightly woven layers of my medical training overlay those layers now. Those layers have also brought joy, pain and knowledge.   The layers tell two different stories. The narratives conflict. One tells me that beauty is seen through love,  shared experience and incredible diversity of humanity. One tells me that beauty is seen through achievement of standards, of milestones, of parameters of GOOD (normal)  and NOT GOOD (abnormal).

Which narrative is more compelling? Which narrative is definitive of who I am and what I do?  What scares me is that the medical layers are deeper than I realize. The brainwashing that I resisted, the kool aide I refused seeped in somehow. I find myself torn.

As I met children day after day who looked different from my usual patients and learned the parameters which we monitor their condition…disease….difference…??! I almost lost myself in some ways. But I also found it so many surprising ways.  My first procedure standing next to the resident and him coming to realization that I was one of these children. I had all the parameters in the NOT GOOD category.  But I was something else than just a side show. I was a colleague.  I had crossed the line and entered the spectator bleachers.  In the moments that I held my hand out to comfort my crying patients as they woke up from surgery or told them to suck it up and do their PT (because I did it too) I found a sense of closure….a sense of beginning and a sense of incredible beauty.

Beauty is not a simple or trite thing. Its raw, complex,  intricate and fragile. Fragile because yes physical youth fades. But more so because we fail to appreciate it and help it grow. We trample it, we try to quantify it, put it on a scale, on a chart. But beauty is too wild to survive such cages.  The problem with doctors is we try to apply our logical, protocol driven training to beauty, to art and most dangerously to social norms.

SO I dried the leaky kool aide and found myself missing the skeletal dysplasia kids on our fracture clinic days. I found myself lonely for my tribe and also longing for the moments when I could whisper.

You’re beautiful. Truly beautiful to ears that so rarely hear such words.  That are so often trampled by our society conception of NORMAL.

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.