Transition…..transition…

In September I had a hip replacement at 25.   My surgeon with his cowboy confidence and bigger than life ego told me as I sat there on a gurney with a heart rate of 119 signing the consent with a shaky hand that it was going to change my life.  I remember thinking dude, I like my life.  Just end the endless sleepless nights with hip pain and I will be happy. Don’t mess with my life.  In fact whatever you don’t screw it up.

I love Wake Forest.  I have the t-shirt, the hat, the flag, the tie-dye!, the key chain, the bumper stickers and the license plate border.  My new car is gold and black.  I sing the fight song and the alma mater and I of course detest UNC and Duke with my soul.  And while Medical school was not always a bed of roses and rainbows especially in terms of gimpness…I stood up for Wake because I loved Wake. I was happy there. Whatever you do don’t mess with my Wake.

Then in a strange series of events I have been pursued and recruited by one of the best pediatric programs in the country (perhaps the world!) which is NOT Wake Forest. And I work here now (or at least orienting now, work on Monday.  The rose colored glasses have come off.

Here I am not a freak. I am not an exception.  I am not even a pioneer. I am number FOUR. I am the fourth resident with a major disability to come through the program.  After I matched I sent an e-mail explaining to the program directors and chiefs my story and what I would need.  They e-mailed me back thanking me but surprised of course whatever  I needed was mine to have.  Everything is accessible. There are  other disabled employees that I see every day working at the medical center. And there is another intern in my year who also has a milder connective tissue disease and disability.

Beyond gimp life, the culture here is ALL about collaboration.  I thought wake was team oriented then I came here where everything is about communal learning.  The culture is phenomenal both for us and our patients. They invented and are perfecting family centered rounds….its so great.  (we round in the room with the family participating).

And I have been a patient…yes already.  I was seen in the connective tissue transition clinic. It was the most enlightening doctor’s appointment I have had in a decade.

Its AMAZING. And I wonder why in the world did I put up with the crap I put up with at Wake…but I love Wake….::::trembling lip:::: I find myself looking back and thinking why oh why did I allow myself to go through the fiasco that was the ED (even the peds side) or the procedures curriculum or allow a gross HIPPA violation of my records to occur, or faculty to say rude things about my disability.  Why didn’t I stand up and say SHUT UP and let me learn.

I have no regrets. Not really. I love Wake but I now understand that my expectations for disabilitness and medical culture have been lower by medical school.   Wake has a loooong way to go.

But I still love Wake. But now that they don’t control my future.  You better believe that when I return in September as a guest lecturer I will be looking for ways to encourage them to keep going.

Now if I just get of my intense anxiety of not being smart enough to be here…life would be sweet.

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.

diversity essay

….despite my recent cynicism I managed to put it aside so that I finally live the dream and become a poster child for WF.    This is going on the medical school’s diversity materials and recruitment materials.

“This is an example of a potentially poor outcome.” the nurse told me matter-of-factly. I look down and see tiny hands grasping mine and bright eyes exploring my face.  My medical training registers the curl of his fingers, the shape of his eyes and the dimple over his lip that defines his diagnosis. But I don’t see a poor outcome. I see a child. I also see myself.  25 years ago I was the baby in the nursery who was thought to be a poor outcome.  I have a disability that stems from a genetic bone disease that I was born with.  I am a patient and a student doctor. My disability was my first attending and it is my constant board exam. It has taught me compassion, humility and grace throughout my life and even more so in medical school.

Just like my classmates:  I take call, I write notes, I learn how to do procedures, I deliver babies and I rotate through all the required specialties.  I do this by using a manual wheelchair to round, an amplified stethoscope to auscultate and a stool to suture or assist in the OR.  Unlike most of my colleagues I can sit down next to my anxious or weeping patient and relate to what its like: to undergo anesthesia , or receive bad news from their doctor or go through rehab after a trauma or a major surgical procedure or even be denied health insurance.

I have never had a patient who didn’t want me to be a part of their care because of my disability but I have had many thank me for sharing my own struggles and stories. I have occasionally encountered an attending or a colleague who was skeptical. But in the end in nearly every situation by the end of the rotation I found that we have learned from each other’s perspectives and become better physicians.

As a patient, as a disabled individual I am a member of one of the largest, most underserved minority groups.   The disabled community makes up 11% of the US population but less than 1% of medical school graduates. I am grateful to Wake Forest for catching the vision and realizing that physicians with disabilities have something not just to learn but also to teach.   I believe my patients are grateful too.  They know that I provide excellent care. They also know most of all that I do not see the labels of illness or disability or poor outcomes, I see them first and foremost as human beings like myself.