Transition State

….What colors do you want your kitchen to be?  Sofa bed or day bed in the office/guest room? Which car insurance agency to do you want?  What is the interest on your student loan?  What is Ohio’s policy on handicapped parking? Have you thought about investments???…

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.

Flex, extend, supinate, pronate, repeat….

Flexion. Extension. Supination. Pronation. Internal and External rotation. Abduction. Adduction. Inversion. Eversion.  Plantar Flexion. Dorsal Flexion. Opposition.

These are the motions of  the joints of the human body and they are precious to me.  (As much as I am quick to tell you my wheelchair is a symbol of my liberation and I fight for equal access to living no matter the ability these motions are precious. Because like the rest of the world I am used to what I have at baseline)

At some point in my life every major limb joint has been in a cast except for my shoulders (because they don’t put them in casts). I have had broken bones (either tramuatic or surgically) now at every major extremity joint: hip, shoulder, elbow, knee, ankle, wrist.   Average people who break have to rehab and regain their muscle strength. Folks like me with connective tissue diseae don’t just break we lock up our joints in fracture protesting scar tissue and angst.  So when I break I don’t just think oh crap I just broke my bone. I  sincerely think Oh dear God please, please let me move my arm again. Let me extend my arm  so i can push my wheelchair or suture  or drive a stick shift  or reach my lost sock at the back of the dryer or dance…..

So I do crazy things like get my non-displaced fractured pinned two days before match day because I know in the battle for movement I will lose to 6 weeks in a cast in a flexed position.  I don’t know how big the lost will be but I know I will lose.

Now I have a pinned stable elbow but I am still fighting. Flex. Extend. just a degree more than yesterday. supinate. pronate. repeat. Flex. Extend…..  I do it all day long while I am interviewing patients, while I am buying groceries or eating Mexican food or talking on the phone.

Flex. Extend. Supinate. Pronate. repeat

mutant anomalies……..

Its hour 5 of spinal surgery.  Surgery number three in my two days of marathon complicated crazy skeletal dysplasia cases.  Even though I have been given a stool to sit on. I am tired. Shivering and Sweaty from sitting in one position all day.  It has been an almost DISASTER case, we loss motor signals and for a few terrible minutes we thought we had robbed a little girl of her ability to move or even breath…I prayed the whole time terrified of the power we had over these lives. All I could think of was the conversation we had when she fell asleep about how she liked to read June-nee B Jones and how her Dad hugged her before he left her.

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.

H1N1-Swine Flu is Overrated

2000 deaths a day nearly all children.

853,000 pediatric deaths a year.

this is not swine flu.

this is a disease that is completely curable.  it also doesn’t exist in the developed world.

Malaria.

lets compare shall we…

Swine flu has caused 6250 deaths since April ’09.

3,900 Americans. **

thats the kicker.

80-90% of the malaria deaths are in Africa.

so the next time you see one of those glossy articles about swine flu or five minutes spots about just how bad swine flu is..think about the value of a life.

Every three days the same number of children die as all the swine flu deaths combined.

Does the life of an American child mean more than the life of an African child?

You know the answer to that question and you also know that CNN is never going to report about in a glossy five minute media spot.  Because no one likes to know about dying children

It so much easier to forget they exist.

I too am guilty of this. For the last six months I have taken notes in lectures, carefully masked and gowned and prayed that my little patients would not end up in the ICU.

I took the h1n1 vaccine along with my other classmates three weeks ago.***  We have been chosen, our young age, our knowledge, the investment the state of NC and the federal government has made in us and our daily exposure makes us first in the line at our hospital even over residents and attendings.

Yesterday I was all in a tizzy because I woke up with a fever, body aches, cough, sore throat and my roommate is recovering from swine flu. Student Health was all in a tizzy too as they listened to my history and promptly wrote me a script a 120 dollar script (20 dollars with insurance) for tamiflu.  I am faithfully taking the drug.

Its not what I am doing is wrong. I just can’t help but wonder what kind of difference we could make in saving the lives of children if we had the backing that swine flu has.

What if for every dollar we spent on swine flu, we sent a penny to Africa for malaria cures?  How many lives would we change? save?

Does a death require less grief if no one knows it happens? Or can we be held accountable for the lives we could save and don’t?

I shudder to think of God’s justice and how much it pales our own man made justice.

Somehow I doubt he is going to buy the whole tree falls in a forest with no one to hear the sound excuse….

**(right NOW swine flu is spreading to the developing world more and more, Ukraine and Mongolia are facing huge numbers with the disease. In Mongolia the WHO fears it could overwhelm their health care system but for the last six months while all the money has been spent, all the decisions have been made its been a developed nation disease…I wonder how many vaccines are being sent to Mongolia???)

***(there is a 2-5wk window period for the vaccine to give you full immunity, my roomie got sick at the end of week 2 so I was not fully immune yet)

Traditions…..memories….nostagia

My family loves traditions.  Making our family Christmas gifts, singing off key on each other voice mail on our birthdays,  the annual cousin Christmas play, dying eggs at Easter, red velvet cake on my parents’ birthdays in Feb, Red Lobster for my sister’s, advent calenders, trivia at the dinner table, lunch after church and I could go on. We mark our milestones and holy days as a family with joyous rituals  always remembering years before variables on a common theme.

Preparing for major orthopedic surgery in my family has familiar rituals  too because its been a somewhat frequent occurrence in our lives.  Some are very practical, some are down right silly.  Its been  a while but one would think it was just last year if you watched how quickly we all fall into the roles we know so well. My Mom sets out arranging things even with me signing consents and doing most of the arranging now she still finds ways. Dad reassures Mom, me, himself with daily pronouncements that everything is going to be ok.  Emily and Tori shuffle in and out of the dialogue offering books, chocolate and wanting to know long i will monopolize all of our lives (my primary question as well) particularly my parents’.

I go to the library stock up on books,  DVDs, audiobooks,  stock up on food. As I packed my car this morning. I  packed pillows. I went to target and bought new undergarments and socks. I found my one pair of shorts that I own and stuff them in my suitcase.  I plan the traditional ‘last meal’ via google and decide on wine and crab cakes (it is Maryland after all).  All the paperwork has a folder, all the appointments are made and all the necessary items are purchased.  I then of course am now taking the traditional joy ride which has expanded considerably since childhood with my driving ability and all terrain vehicle.  This time it will include a week of visiting, going to the beach and general traveling.

And just like with all rituals and traditions…I remember.  But they are strange memories as I suppose all childhood memories are to some degree when we looked back at them with  adult reason and knowledge. The last time I had major hip surgery I was 13 and although some times I thought what it would be like 10-50 years from now, most of the time I just wanted to be able to go through a whole year of school without having to be on home-bound.  I wanted to get through a Spring where I didn’t break a major limb to pieces over something ridiculous like walking the stairs.  I wanted to be able to stand for a whole play or walk my dog or go hiking with my family like I had when I was younger (5 yo- 10 yo). Frankly, my life was pretty awful between the pain, the social isolation and lost of the abilities to do many, many things I love. I was begging for surgery.  It made so much  sense.

But now my desires are so much bigger, I haven’t been ‘sick/injured’ from Kniest in a decade other than an occasional minor mishap. I have traveled the world, graduated from college, live independently, drive a car and do crazy things like ski and play doctor.  And I don’t want to stop any of those things, moreover I want to do more like live overseas, complete a residency, get married, have kids, raise them, etc,etc…  Handing over my life to the hands of a surgeon is so much more difficult now. The stakes are higher, the leap is so much scarier.  Its not about just making it off the ground it, its about finding my way back to  the lofty altitude I have been cruising at for the last 9 years.

The roles are the same, the rituals are the same but the dance is so much more complicated than I remember.