Transition, Transitional Medicine, Total Freak Show….

My life is in an uproar.  I am becoming a real adult and a doctor all at the same time.

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.

Tribal Educaiton

Tonight I had one of the most moving and profound experiences of medical school. I have befriended and mentored a peer with spinal bifda who is still living in her parents basement although is at long last making real progress torward finishing school, getting a job and learning to drive.

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…

Despite it all…

Despite your birth defect/congenital anomaly..

-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.

Strange Bedfellowes

I woke up this morning and pulled on my chacos and some leggings. Over the leggings I put my African Kanga.   I put on my Masai earrings and my special necklace made for me and given to me by a disabled woman in a small village in the valley.  Today was Global Health Day.  Every day of my life is Global health day. I think about my friends and times abroad at least 20 times a day. But today other people thought about it.

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.

circles….

this is long I apologize…..but it was a life altering day.

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)