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

Grace….

I fail at Grace.

Do you know how hard it for me to say those words? Do you know how hard it for me to say I FAIL.  Failure is not an option.  I look back at this year and more than any other phrase that is what echos FAILURE is NOT AN OPTION.  My hip is bone on bone at 25 in the middle of my residency interview season…failure is not an option…not matching on time NOT AN OPTION.  Yes because I would lose my insurance but more because I don’t fail. I especially don’t fail because of my disability.  I go back to school 21 days after total hip replacement, I lose my crutches at four weeks. I am rehabbing and going to medical school full time and I am exhausted and I can’t see straight I am so tired. But I got up and drove the 5 to 7 hours to go interview all over the Eastern Seaboard. It hurts to sit in the car for so long, it hurts to walk tall and straight and unassisted but I can’t appear more different than I already am.  Failure is not an option.

Its the middle of December there is a snow storm brewing one of my most important interviews is the next day and my cell phone won’t shut up. Its a top ranked peds program that somehow figured out that I was part of a computer glitch and my invitation to interview got eaten. I drive like a mad woman to beat the snow till 1AM.  I am 7 interviews down, flying from Texas the day before the interview and it the interview will be my 5th in 7 days. But I take it. Because failure is not an option. (oddly enough I matched at the almost didn’t happen interview location)

I get snowed in and reschedule my last interview on the day I fly to Kenya because failure is not an option.

I get to Kenya and discover that my day to day life involves walking uphill quarter to half a mile daily.  I am 16 weeks out from total hip….it hurts.  My manual wheelchair never leaves my flat. I have hourly muscle spasms that radiate into my back. Failure is not an option.

I commute 30 minutes both ways for a month in Delaware in four blizzards no less.  I stand in the OR for countless hours.  My attending shows disdain for the wheelchair and my messed up childhood pysche and pride keep it in my car. Failure is not an option.

So when I broke my arm a week into my ED rotation, four days before match day. You better believe that I forced them to push the surgery up so I could not only match with my class but make all my ED shifts.  Failure is not an option.

I matched at Cincinnati Children’s! A ridiculously good program but does that make me relax?  No it does not keep me from killing my self with one arm to suture in the ED or kicking myself for not being good at it?  Does it see me asking for special treatment in the ED because I can’t use my manual chair with a broken arm? Heck no.   Failure is not an option.

But you know what. It is an option.  Imperfection is not just an option its inevitable.  I am not invincible.

I can’t think straight at work and I feel like my A-game is weak and bleeding.  And you know what I am human. And yes I am human with a muscloskeletal system where failure is not just an option its the status quo. And you know what there is no shame am saying I just had surgery less than week ago, I still have stiches in my arm and honestly I am tired and a little frazzled and not on top of my game.  SO please don’t mess with me, don’t give me grief, please just be gentle with my wounded pride and my shame at saying. I am failing to be a 112% today. Please allow me some….

Grace.

Spectator Sports

You’re beautiful.

Those words might not mean much to you. Maybe you hear them often, maybe you think them often. Maybe you find these words trite or cheesy. But these words have so much power in hearts of young women with skeletal dysplasia or craniofacial syndromes.

I have a lot to process from 4 weeks of skeletal dysplasia.  But this I think was the most important thing.  We have replaced circus side shows with reality TV. But almost morbid fascination and fixation on being little or being funny looking has not changed, its only be rewoven into the politically correct fabric of our culture. We as doctors care compassionately and encourage patients to live the best lives they can.  But inside do we still secretly subscribe to the side show theory? Do we also secretly enjoy being a part of a tight community but would be disappointed if our children turned out to have a role in the side show?   I know what our culture thinks. But what do I think as a physician?   What do I think as a giant dwarf with midface hypoplasia, kyphosis and knobby joints?? D o I think little and funny looking is beautiful????

The answer may seem obvious. To answer anything but YES is to deny my own self.  But in the back of mind I begin to dissect away the layers of how I approach my double life.  The glistening, scarred but sacred layers of my childhood filled with the joy and the pain of being different but also the irresistible knowledge that comes from seeing the world through the eyes of difference. But the pristine, orderly, tightly woven layers of my medical training overlay those layers now. Those layers have also brought joy, pain and knowledge.   The layers tell two different stories. The narratives conflict. One tells me that beauty is seen through love,  shared experience and incredible diversity of humanity. One tells me that beauty is seen through achievement of standards, of milestones, of parameters of GOOD (normal)  and NOT GOOD (abnormal).

Which narrative is more compelling? Which narrative is definitive of who I am and what I do?  What scares me is that the medical layers are deeper than I realize. The brainwashing that I resisted, the kool aide I refused seeped in somehow. I find myself torn.

As I met children day after day who looked different from my usual patients and learned the parameters which we monitor their condition…disease….difference…??! I almost lost myself in some ways. But I also found it so many surprising ways.  My first procedure standing next to the resident and him coming to realization that I was one of these children. I had all the parameters in the NOT GOOD category.  But I was something else than just a side show. I was a colleague.  I had crossed the line and entered the spectator bleachers.  In the moments that I held my hand out to comfort my crying patients as they woke up from surgery or told them to suck it up and do their PT (because I did it too) I found a sense of closure….a sense of beginning and a sense of incredible beauty.

Beauty is not a simple or trite thing. Its raw, complex,  intricate and fragile. Fragile because yes physical youth fades. But more so because we fail to appreciate it and help it grow. We trample it, we try to quantify it, put it on a scale, on a chart. But beauty is too wild to survive such cages.  The problem with doctors is we try to apply our logical, protocol driven training to beauty, to art and most dangerously to social norms.

SO I dried the leaky kool aide and found myself missing the skeletal dysplasia kids on our fracture clinic days. I found myself lonely for my tribe and also longing for the moments when I could whisper.

You’re beautiful. Truly beautiful to ears that so rarely hear such words.  That are so often trampled by our society conception of NORMAL.