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…