Through the veil…..

When you think about a sick child…what kind of images flow through your mind??  Probably unhappy ones.  Children should not suffer. Its one of the rules of the universe….all religions seem to agree on it….all moral codes…the innocent should not suffer.

But kids get sick and they do suffer.

its reality. call it the fall. call it evil. call it the facts of life.

kids suffer.

So what do we do with that information?  Well we try to alleviate their suffering…..what does alleviate mean?

11 yo with cystic fibrosis (bad, bad thick mucous slowly clogs your lungs and your pancreas making breathing, digestion and eventually sugar balance difficult).

CF is a bad disease and we require a lot from our patients to maintain their health.  Our patients are frequently in the hospital with lung infections.

What kind of allowances do we make for children who suffer?  Is it ok if they don’t always have to obey the rules?  What about doing their therapies?  Taking care of them selves?   Do we  not cause further suffering by just letting them get away with stuff?
On the CF floor, we never make the kids do their Pulmonary function tests if they don’t want, we never make them control their blood sugar even if the have normal BMIs because they are CF kids so obviously they All are failure to thrive (MYTH!)!

Frankly it drives me to distraction.  Do you know what the increased mortality is from poorly controlled diabetes with CF…A DECADE. A DECADE of a life for a person with CF??? (thats with the average life span, 25% of their lives)

I realize sometimes we have to choose our battles but we also have to make sure  to help our patients fight theirs.  CF sucks. Being sick sucks.  Not being able to have a normal childhood sucks. Dying in childhood sucks more.

I don’t think we alleviate suffering by pitying the patient or pampering them. I don’t think we teach them self-advocacy and I don’t think we teach them to fight.  That doesn’t mean we should cram medicine down their throats or be cruel or legalistic about or force them to do anything. It just means we are honest with them  and that we encourage them not to think about how their life sucks because they are different but by giving the same expectations and grace we would give any child.  A sense of boundaries, a sense of security and encouragement.

Yes Children suffer.

But children suffer more when we don’t love then and treat them with the expectation that they matter enough to us that we will fight for them.

:::off soapbox::::

Cultural Obligations

12 people are waiting for a bus.

One is in a wheelchair. A green wheelchair.

The wheelchair does not fit on the bus.   The girl in the wheelchair gets up and starts to fold up the chair. With her backpack on her back with the body under one arm and the wheels under the other she is tittering as the bus arrives.  The other 11 people stare at her.

In their eyes they they tell their stories….uncomfortable, guilty, annoyed, not making eye contact.

11 people rush by to get on the bus.

The girl is left lugging her chair slowly up the bus stairs.  Finally one person offers a hand.

The bus driver. (a middle aged, obese African American woman)

Then one of the people on the bus rushes forward almost too late to help at all.

The bus leaves. When it arrives at its destination. The bus driver picks up the chair and the wheels and places them on the sidewalk for the girl with a smile.

The 11 people look on, some gawking, some looking guilty, some walking quickly toward the building because if they are oblivious it didn’t happen on their watch.

The girl reassembles the chair and thanks the bus driver.

Then she follows the other 11.

The 12 bus riders.

There are the same age…..

……they are the same soci-economic status….

……..most are white or Asian

They have all have advanced degrees.

In fact they are all doctors.

Medical Doctors.

Pediatricians no less.

Is it because I live in the North now? Is it because I am professional now?  Or is because doctors are uncomfortable with the idea of disabled doctors?

or is it none of the above.

All I know is this never happened to me in NC. It happens to me every day here.  I get doors slammed in front of me, I have people take the stairs in front of me in a group even while I am saying the elevator is this way, people rarely talk socially to me if I am the chair so I push the chair so I can have conversations…..

Oddly the program here is much more supportive then the school in NC (see previous entry). Yet my colleagues there were much more accepting than my colleagues here.

What gets me is not the social persecution (because when I am with my new friends they are not like this…not everyone is like this just most of them) or even that my life is physically harder (I am ok with doing things myself…I get through it) its that these people are about to be released on my tribe.    Its fact that most of them walk on by completely ignoring me as if I don’t exist to them in the wheelchair.   What does that mean for their patients many of whom will be chronically ill, or disfigured or using assisted devices?

SO  do they only talk to disabled people or choose to be compassionate when they get paid for it?

No I don’t think its that.  I think its just that I mess up their concept of the doctor-patient sacred boundary.  And I mess with their comfort zones.  Gimps are supposed to be needy and sell pencils on street corners.

But then there is the bus driver….why did she help when my peers, the doctors didn’t?

I don’t know her.  But I could make some guesses.  Although guesses are dangerous.  She doesn’t have our education or our privileges but perhaps she is better for it. Perhaps she knows something that most of my peers and most physicians will never understand even though they are up to their eyeballs in it.

Maybe she knows what its like to suffer or be different or know pain.  Not even necessarily in the physical ways I have known them.

Most doctors (by NO MEANS ALL) who grow up in the states and train in the states know very little of these things.

And in the end I think this is the problem. This is the cultural barrier. Its not my collagen genes or my flat face or my southern drawl.

Its what they don’t know that I do that is so terrifying.   Because believe me if there is anything that we doctors hate its to be one who doesn’t know whats going on.

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…