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.

biazarre blizzard

I once had some one tell me I was a wounded healer. Someone who can heal because they have suffered. All through every interview, nearly every conversation about my double life as a patient-doctor someone always mentions that I must be some emphatic to my patients. I truly understand them.   I have always felt slightly unnerved by this. Despite the fact that I love talking and playing with disabled children (or really any child) and counseling their families.  I can say we have an understanding but I do not think I cannot say I can relate to how they experience their medical situation. Its personal, it really is.  Plus having Kniest is not like having childhood cancer or a heart defect or type one diabetes. Its unique.

But if I ever I was going to get it. If ever I was going to truly understand the insanity of all this, it would be now.  Today.  When I was 9 yrs old I could barely walk and I couldn’t stand up straight. My hips were contracted, my knees were knock knee-ed to the point that my back was swayback.  I had a massive surgery. I have written about it before. Three surgeries in one. I was in the PICU for four days, two units of blood, two weeks in the hospital and oddly a huge blizzard of 2-3 ft of snow. There are nights from that period that I can still recall in vivid detail down to the last blood draw. If  ever I was going to say I had a scarring medical experience it would have been that.

Today I met a friend who I have known for a long time virtually but never met. She is 8 and we could pass for sisters. Our childhood pictures at the same age look remarkably similar. Instead of going to the OR or really playing medical student I spent the day with her and Mom for her pre-op work up.  The pre-op work up was supposed to be my educational endeavor for the day but honestly I could have repeated the sequence with my eyes closed.  I mean I literally did this 6 times here alone.   We had a great time though playing, racing up the hallways, talking and getting to know and her Mom.  I knew watching her walk what was coming but I doubted my inexperienced instincts.

My instincts were right on,  we looked at her film, we examined her and the plan was set. Bilateral femoral osteomonies. My heart melted a bit for my young friend.  They talk about the post-op pain and epidurals and physical therapy and I just sat there and remembered it all as they glossed over it like it was somehow an every day event for one to have broken legs in three places and then try to move it less than 24 hours after the blessed trauma. I was so struck by how little they really knew..At one point the oddest thing was said, my young friend looked at my attending/our doctor/world famous physician who is the Chairmen here and said “But Amy has way more skills, right?”  I of course said NOOOOOooooooooo quite seirously. But I look back and think what did she mean by skills?   I  thought to myself how often do you have an almost physician in the room who can say I HAD THIS DONE.  Does that count for something?  If  I could go back to the night before my own procedure what would I have had told the younger me?

I have no idea and I had no idea as we sat there together side by side eating pizza, playing cards and chasing paper airplanes. After all this talk of empathy, wounded healing shenanigans I fail to see what my added superpower is.

I asked my young friend if she had any questions for me as her friend, as her fellow Kniestian, she told me ‘NO.’

and I thought to myself  she knows. I think we all know somehow. We all know that all we can do is just muddle through it. You can prepare for it but not really.

It is snowing with gusty winds just like it was 16 years ago.  I can’t get back to my house in Newark safely. SO I am stuck here among other hospital employees camping out here. I never thought I would spend another night here but here I am in scrubs on a cot in a classroom.

maybe that is the key. here I am.

maybe the added superpower is that I exist. maybe the healing is that fact I can stand up straight and tall in scrubs tomorrow and be at peace with my life, with an awareness and respect for my past wounds, with joy in the present of having the privilege to study under a truly great doctor and play a very small part in helping a dear friend and with great hope for the future of being able to live my dreams unhindered by my  physical wounds.

how many are blessed enough to have that sort of triple blessing?

Maybe that is what I would whisper to my tearstained, pain-stricken 9 yr old self shivering in the PICU if I could….be still.

rest in the knowledge that this is only a blip in the master plan of your story.

if my young friend turns to me in my mask and blue scrubs tomorrow with fear or pain that is what I will whisper to her.

Children Keep Dancing…

There are a million things to say about Kenya which I can’t even begin to process

Today I started my peds ortho away with my childhood doctor. For starters there are ghosts, memories, hopes, dreams, sleepless nights, screaming, pain, sweat, blood and tears behind every corner even with the remodel of the hospital the worst and yes even some of the best of my childhood is contained within these walls. I tred carefully for as has been the theme of the last week I stand on sacred ground.

As I child I feared/loved my doctor and he haunted my steps at times, made me think before I lept. Now he is my attending. A strange change of power….its odd for him too. About half the time he introduces me as his former patient, the other half as a random med student.  He teaches me quite passionately and patiently. he is far more patient with me sitting in the OR or struggling with my sewing than any surgery attending I have ever had. Of course he is. But I am wary with him,  its awkward a lot but it works best when he is teaching me as my attending and not trying to process the oddness of me at 25 grown up, on my own and not his patient.

There are strange moments though where its very hard for me to sit back and play med student.  I scrubbed in on a Cervical fusion today (ha!). The induction took a looooooooooong time. It was a skeletal dysplasia kid, one of my kin.  The neurosurgeon made several jabs about how my doctor’s “population” always took this long.  I bristled, my face was hot. hey buddy, those are my people.  I remember once there was a ENT who made several really unnecessary comments about Chinese  students with a Chinese student sitting right there.   I remember thinking what an idiot for not even noticing the med student was Chinese for crying out loud. But here I was pierre robin in all siting there staring at this highly educated doctor and I realized that he had no clue.

In a way it made me happy. Sometimes I forget that I can do this. Blend in if I am sitting. Later in the case he starts to inquire what a good Southern girl n from such a good school was doing in Delaware.  I told him I was referred here as a child, he looks at me and still doesn’t see it. Finally my doctor rescues him, she has Kniest…she is just tall.

Good for her, neurosurgeon says

Not good for her orthopod says

Honestly its all I have known I am neutral on it at the worst, I say really not wanting to debate my perspective on losing/winning the genetic lottery for the whole OR.

then they go talking about how people with conditions go into what they know.

I was glad more than anything that the secret was out I felt so much more at home among my people than I did in the blue scrubs.

the uglies

everyone seems to like listening to my life stories. the little gimpy kid with the disease no one has ever heard of growing up and becoming a doctor has a nice ring to it.  the stuff on my resume makes me look smart, sane, mature.

but in reality most of it is a facade. none of it is untrue but putting it all in bullet points on a sheet of paper cuts out all the details.  no body likes the details.

the details are ugly. everyone wants to know how my surgery went. but everyone wants me to say it went great. everyone wants to know what being a disable medical student is like but everyone wants me to say its been swell.

I just had a surgery that was basically palliative care. it didn’t cure my disease it kept me from pulling my hair out because I can’t sit still because of the the pain. but the truth is yeah the actual four hours of the surgery went well but physical therapy is a bit of a disaster.  i have what appears to be a three to five year old flexion contracture that is not only tough as nails but if it doesn’t get better is going to wear the prosthesis down much faster than usual (which basically knocks off years of walking).  No one diagnosed this crucial fact…one has to wonder what role it played in the hip pain the first place. no one wants to hear from the little medical student that her transition from pediatric to adult medicine has been fraught with peril, that the adult orthopods are not only ignorant about her pediatric disease but too arrogant to admit it.  I suffer for it not them.

I am getting up at 5 AM, rounding on patients I do not know half the time, writing notes either observing (as in not touching) in the OR or occasionally interacting in clinic till 5PM when I go to PT and get pushed on till I finally get to go home by 6:30 and then repeat. today i repeated plus SWINE FLU.

then I try to prepare for things like my interview on Friday, fall asleep on my computer and then wake up in the middle of the night and worry about the flexion contracture that gives me muscle spasm cramps randomly and frequently that leave me begging for tramdol and has not moved a single degree in the last three weeks.

no one wants to hear that some times I come home and I cry with frustration and pain. no one wants to hear about how some days I absolutely hate my chosen profession not just because it has so few answers for me but because  no one have the balls to admit they have no answers.  Good gosh people just tell it like it is. do you think I somehow don’t know that it sucks?

no see that doesn’t sound all that inspirational now does it…

Circles…

I spent a good portion of this week figuratively and literally lying prostate on a table having my someone pull my body into various positions until with my teeth gritted and  tears stinging my eyes I said “I surrender”   My orthopod last week said my x-rays were perfect, my PT progress was not.  He lifted the precautions for PT which means we can attack the flexion contracture with full force.

And so we did and because scheduling PT is like scheduling meetings with Obama I had three days in a row. While it was exciting and somewhat luxurious to lay on my belly…  by the third night I was downing tramadol at 1 in the morning because the muscle spasms were bad enough to wake me from sleep. I have been down this road before…my connective tissue just gives up and hopes  I won’t notice.  Then I spend months fighting it back into submission.  Only to have it eventually give up again and we go back through this whole cycle of me laying prostate on a table for several months….

Then there was the scheduling mishap that landed me on a surgery rotation.  And here I was waking up at 5 AM from my muscle spasms disrupted sleep cursing myself for letting Student Services sign me up for Peds ENT.  Three hours later I was either in the OR a place that makes me feel cold, nauseous and bored or in ENT clinic having my attending yell at me in front of patients to hold my otoscope like I held my pencil…I explained I was HOLDING IT LIKE I HOLD MY PENCIL…it never occurs to him maybe I don’t hold my pencil like everyone else….and I have daily flashbacks to writing my name in Kindergarten over and over again. My teacher standing over me saying THAT IS NOT HOW YOU HOLD YOUR PENCIL. I remember looking at her and wanting desperately to please her but knowing fully well that I could not hold my pencil the way and form the letters.  Why couldn’t she just understand that this way was working for me….

So here I am in my last 6 mons of a doctorate program and am being yelled at for how I hold my pencil.   Oddly not much as changed in 20 years.

or the last 8…

On Thursday night and Friday morning I put on makeup, I styled my hair, I wore designer clothes….and went to my first peds interview here at home. I walked into my faculty interview and before I had barely sat my little spazzing butt in the chair Dr M looked me straight in the eye and said ” Amy, I am not going to interview you, I know you well and you will have no problem staying here, you fit in well here and we want you to stay. Now surely they are pros and cons for you staying in town  but just so you know if you rank us high, you will match here. Now what other schools are you applying to?”   I sat there in my smart suit a little stunned, I had prepared answers to all the usual questions.  I had not expected to be courted, to be wanted badly enough to not even be interviewed.  My chief resident interview strated similarly after we looked at cute pictures of his baby girl..”Amy, everyone knows you and likes you, we want you stay here so I am going to give you the 5 min speal about why you should.” And the 5 min speal was not some standard thing it was obvious that it had been well prepared with regards to me…these people know me well, they have had 8 years to study me.  And part of my wall melted a bit I walked out slightly intoxicated by the idea that it would be so very easy not to break the cycle and just stay here….

and here we are back to where I melted four years ago sitting in a Ruby Tuesday where my dad handed me a check of early inheritance.  And I dissolved into tears and called the med school admissions office the next morning to declare my intent.

so here I am laying prostate on a table with my teeth gritted and my eyes stinging wanting so badly to just say…STOP I have had enough but not wanting to appear…weak.

It is  so easy to just keep going, to just circle around and around and around…