Here I was excelling in medical school, living my dream, planning my first trip to Africa and having no idea if I would be physically able to continue in a few months, years. I finally found the courage to get x-rays, a kind rheumatology fellow who I frankly owe my sanity to paged me and went over the films with me gently. He talked me into a steroid shot in which a the radiologist furthered my anxiety with talk of strange anatomy and bone density.  I made an appointment with the hip surgeon who I had met several years earlier and wrung my hands as I studied for Step 2, started my residency essays. The visit upset me even though I knew what was coming and gave me the strange transition of me explaining to my anxious mother what the doctors were saying. He gave me another steroid shot that was amazingly effective and I lived with denial for a summer, went to Romania and pretended that everything was ok. Perfected my residency essay, then my peds AI hit me like a freight train and my denial started to crumble.  My first patient died of pneumonia related to muscular dystrophy in an all night vigil of wailing parents and I was reminded of my sweet Romanian friend whose similar death had rocked my world in college.  Our parallel diseases differed in two major ways, there was a palliative yet potentially close to curative treatment for the symptoms of mine and even when I had no cartilage left…I wouldn’t die.  Visions of a beloved elderly patient with RA who had movement in her hands, was going blind and couldn’t get out of bed flashed through my brain…could I live with that reality?  Visions of the synthetic hip failing because of my bone density and knowing that once we took my femoral head they was no going back, if the prosthesis failed, I wouldn’t walk again.  After the on call vigil, I drove home to the mountains then onward to get a steroid shot.

Within in weeks, I could no longer deny it, the shot failed. I wasn’t sleeping now because of the pain.  It was everything I could do to keep the facade that I was just another medical student. I called my surgeon’s PA and cried in the child psych copy room and told her I wanted to do the surgery now.  (yes I had a nervous break down on the pysch floor…fun yes). Things fell into place, the surgeon fit me in (I am sure he was shaking his head thinking finally I was ready a year ago, this girl is nuts).  I passed Step 2, got my first residency interview and with tachycardia to the 120s, lectured my anesthesiologist on the decreased number of DVTs with spinals opposed to general as they rolled me into the OR.

I was a neurotic post-operative patient but I went back to medical school three weeks later, line danced at 5 weeks, interviewed for residency at 6 weeks, Kenya at 16 weeks  and by the time match day came I was taking the steps two at a time for the first time in my life.

I went through a similar period of denial and anxiety although much milder, fought to get steroid shots in Cincy( Part II, Part III). Epic fail, telling my  chief resident was near to the copy room incident. This time the PA tried to comfort me that even though there was a boat load of hardware in the hip, they would figure it out and I would be ok. I nearly lost my insurance coverage, took the Step 3 and then spoke in DC the week before.  By the time I got to the OR I found myself in a much better place than the previous time, believing that somehow the hip would work despite the hardware weakened bone and that I would walk out of this better than ever.  I found myself telling everyone (yay versed) my bucket list of things I wanted to do with two shiny hips (I remember this prior to heavier sedation but apparently I kept right on going although I don’t remember it). I woke up to the news that miracles of miracles the hardware had not prevented them from using the best kind of hip as expected and I had a 30 year lease at minimal. I was texting everyone I knew in the PACU and thanking everyone from the jainator to God for my incredible good fortune.  My family and I survived me with five weeks of unplanned toe touch weight bearing while the hardware holes healed despite a funeral, a mild incision infection and general angst on the part of a sibling.

And I find myself at 5 weeks post op sitting in an exam room across the hall from where this all began three years ago with the visit (see above). The PA comes in and asks me when I am going back to Africa?  She hands me the films with a grin. There they are, healing perfectly. Her optimism is infectious and suddenly as I remember how fragile it all seemed three years ago.I think back though to my first pediatric death and of my sweet friend Laura who died of a similar diseases (dying muscles and connective tissue…I have dying cartilage and connective tissue) and how in some strange way of the disability tribe I feel I owe them, they expect me not to waste this, to live with reckless abandon.

I am overcome by gratitude this time sans versed.  Nearly in tears.  The attending comes in  says my name, kisses my cheek and says “You’re Done!”  He grabs his cell and proceeds to call my pediatric ortho to tell him the good news. (yay for transition..although it was kind of a weird move)  He draws me my “life plan”  which includes one more visit at 6 months, then no more visits for 2 years.   It doesn’t seem real. No more hip pain, no more hip precautions, an inch taller (much to my sister’s dismay) I can throw away my crutches, 6 weeks of PT and then welcome to the rest of my life.

Mom and I drive back down the familiar spine of our beloved mountains, a little giddy despite the recent family sorrow, amazed at marvels of modern medicine, of grace and of the incredible joy of sweet relief and the sweet ability to dream.

Praise God.

Becoming a disabled physician is one of the greatest things I have done in my life but it also was among the most painful.  Being told that you have no right to be here either in attitude or in voice is not pleasant. Being a pioneer is life defining but it also emotionally and psychologically exhausting. At the end of my time at Wake Forest there was a series of unfortunate events, attempt to fix it and the epic fail.  I left some what devastated but determined to go out into the world of medicine and make my difference with or without my esteemed Alma mater’s support. Because while I may have failed in some regard as a pioneer I did what I set out to do which is become a physician.

I heard rumors last year that they had interviewed a disabled applicant here and there. I rolled my eyes and dreamed of telling them of going elsewhere although knowing that there were no safe places for us in the world of medicine as student doctors.  I went home and lectured last year and was welcomed like somewhat of a returning hero which was odd and bit over the top.

Then I heard nothing for a long time. I grew as a young physician in an environment where I am not entirely at home but am safe from the constant pecking at my heart that I will never be good enough although I have relapses.  I suture, I LP, I travel back to KENYA and take attending call, I get my first job offer, I move to a house and no longer feel like I am camping in exile.  I move on.

But I return home again to give lecture to another group of young student doctors who meet the cut that I apparently never quite made.  I am again welcomed. As I walk into the classroom I see something that nearly takes mybreath away.  There is a student on front row sitting with a place at the table literally (the classroom was not wheelchair accessible till my second or third year) in a power chair.  I have tears in my eyes.  In all my moving on, I had forgotten how much this matters to me, how deeply I was hurt and even though I had gotten the diploma, how much I felt like I had lost an equally important battle.

But in fact I won.  We won.

I corner the  Dean and demand why no one told me, he smiles sheepishly. I though you knew, he tells me.  I thought you knew.  I welcome the new student, she has heard so about me. She thanks me for paving the way. She applied at 31 schools, Wake Forest was the only one that accepted her despite her double degrees, top grades, from a dare I say more famous Carolinan institution with a unspeakable mascot that is percuilar shade of blue in Durham.  They chose me, she says,  and I know its partly because of you.  She has dreams of working with our tribe, of impacting children.  According to her anatomy professor she is top of her class.(a better student than I ever was…hehehe)

I give my lecture, I think the best I have ever done. The Dean says I have grown into a public speaker in my own right from being a terrified first year medical student. I look at him and I try politely to tell him that I no longer have anything to fear.

It didn’t end there, I had glorious Carolina afternoon catching up with friends, mentors and basking in the sunshine.  I sit and drink tea and laugh late into the night with old dear friends as we talk theology, justice, nostalgia and wit.

The next day, the Dean of Faculty (Dr BIGSHOT) calls me and asks me to come see him (he was out of town the day before). I show up in jeans in his formal office, he hugs me.  He immediately turns to the young woman I met the day before, isn’t it great he says. He goes on to tell me about what happened after I left.  He confronted the ED doctors who were fighting so hard to change our standards. In a faculty meeting, they gave presentation. They argued that if you asked 50 people out on the street if you want their doctor to run to a code, they would say yes.   Dr. B said, “Yes and 50 years ago people would have said they wanted their doctor to be white and male.”     That was the end of that he tells me.

We talk of global health and he gives me the finest career advice I had despite my esteemed current employer.  He tells me, pack your suitcase and go to Kenya you will figure the rest out as you go along.   He encourages me to follow my dreams and not be confined by the mold of the academic rat race in less I wanted to be.

But as I leave what sticks with me is that its rare in our lives that we are allowed to know the extent of impact we have on our piece of world.  I will never be able to put this on my CV or even discuss in an interview. I will never get an award for it or get my name published in a top journal.  But I will go to my grave knowing that I was privileged enough to change a few hearts in regards of my tribe.  I was able to at least for now make a safe place for disabled student doctors to study and grow and find their piece of the world to change.

A few days later in the mist of my ED shift, I got an e-mail from the Dean who told me that he overheard some first years talking about my lecture and how they would never use the word inspirational again (ha!) and how I had changed the way they think.

The movement goes on.

I tried so hard to be a good pioneer so people would wake up and take notice and now for the last year and half I did everything to just conform so that I could just be another physician.  I realize both are only fragments of the woman God has me becoming.  And finally after five years of wandering and feeling a little lost, I came home to myself an feel a sense of contentment.

Yesterday was Grand Rounds and I was post call. It was on chronic pain in connective tissue disorders….NO REALLY it was.  I slumped in the back, ate my oatmeal and hoped that sleep would overtake me quickly. It was all fun and games while the geneticist gave an explanation of connective tissue disorders. Then the rheumatologist went on about Fibromyalgia and JIA.  I drifted in and out. Then the psychologist got up to talk and went on about chronic pain and patients (our) poor quality of life.  And how much they (we) feel persecuted in the hospital when they come seeking meds and how they pass up activites they would otherwise enjoy and then how there is a higher rate of suicide. They went on to talk about new research studies that were ongoing looking at day hospital treatment for chronic pain. and cognitive therapy.

I sat there in the corner in my imaginary white coat (I never wear one, it scares kids) and shook my sleepy head at this. Its all fun and games until someone misses the point.  Maybe part of why we have a higher rate of suicide and “poor quality of life “is not so much our pain but the medicine we use to treat it. And medicine in the literal and larger sense.

What if instead of taking our chronic pain patients out of society and out of school to be in a day hospital program, we find ways to help them engage in life? What if instead of giving narcotics like candy to our sickle cell population, we tired alternate methods or we at least stop complaining about how they are addicts because WE (the doctors WE) gave them their addiction!! What if we stop trying to make pain less depressing and find ways to make life more worth living? What is our goal, be pain free, or be living our lives?

I agree grand rounds friends, chronic pain is a mind game.

But its some what clear to me that you have never played.

Chronic pain is a series of choices.  Difficult choices. Defining choices but choices never the less.  Every day you wake up and you decide what rules today?  My life or my pain?  Do I fit my pain around my life or fit my life around my pain?  You can tiptoe around on eggshells and slip and fall or you can run and not look back.  You don’t choose to live with pain but you do choose to live to the fullest. TO live with joy. To live with gratitude.

Doctors, all the study show we are actually quite bad at understanding what “quality of life” means to our patients so maybe we should listen to them.

I rolled my eyes and my wheels and took my poor quality of life upstairs to rounds and helped save some lives. Then I went home, had a mug of tea, a long bath and a nap. I woke up and read a book, went to bible study, came home and finished the book.

Like I said me and my poor quality of life…..

Baking something yummy.

North Carolina Wine

Old Friends.

New Friends.

Summer Nights.

Clean clothes.

Good Books

Clean hair.

Pedicures

Grace

Children and their wisdom.

A Good Night’s Sleep

“To whom much is given, much is required.”

90% of the world’s children live in the developing world and a huge chunk of them have limited access to care. In the world of endless ventilators and children who are trached and have permanent feeding tubes where I live it is easy to forget that most children are lucky if they can get IV fluids.

We have so much.  And much, much is required.

As I stare in the face SHINY HIP number two a procedure that costs 50,000 Kenyan Shillings and probably at least 30,000 to 40,000 US dollars.  I am so grateful. So grateful. That I don’t have to go beg my relatives to come up with the money or choose between eating and my medicine.  I am so grateful for my magical insurance card that several precious friends here in the States do not have. Not to mention for the divine provision that the best surgeon in the US is at my finger tips in network, four hours from my parents’ home.

I have been given so much.  And much, much is required.

I am disappointed about canceling my trip to Zambia in Jan, a casualty of the scheduling changes that took place to make way for the shiny hip. But I am so grateful. So grateful that I have been given a way out of the constant pain and the progressive disability so that I can be healthy enough to move to Africa full time a year and half post-op.

So much given and I am ready to do what is required.

As I stood in the chronic trach/vent unit surrounded by ventilators, monitors, suction tubes, catheters and back up ventilators and tubes and catheters….I could still taste the Kenyan Chai that I had a breakfast and I found myself carried away to  place of red dirt, mothers that breastfeed without shame and my one precious ventilator.  Suddenly I am filled with a deep longing to just be there in the Kenyan sunshine where my job makes sense. I find myself feeling guilty not for what I don’t have in Africa but what I don’t have in America which is some sense of guiding purpose. We are surrounded by options but we seem in some ways to lack the ability to discern any option other than just keep swimming.  Countless kids with medical laundry lists of problems, half of whom were there a year ago when I cared for them last. I can’t see the forest through the trees.  Am I really helping them or am I prolonging their pain?

But then the internal slippery slope sensor in my disabled souls says I cannot stop swimming….because these children belong to my tribe. But I feel like there are  prisoners. We have a created a system where we save them but we cannot sustain them, they can’t go home and well…as we say in Africa they can’t go HOME. (meaning the next life).

So I struggle to help my interns not drown and keep myself treading water. I find myself stopping and talking firemen with one child and light sabers with another and I hope for them and I pray for them. Both have been there for literally years of their lives. And while I travel the world, they stay. They stay.

And I drink chai.

Because sometimes being on Africa time if only for a moment keeps me from internally combusting from how much I ache for the lives in my care both my new interns and for the children who steal my heart as they perform acrobatics on the thin line between life in this world and what lies beyond.

And one day I will sit down with God and drink chai and ask him what was the right answer to the painful questions that haunt me…

I am ushered in by a nurse who asks about a billion history questions even though I handed her my neatly typed medical summary. Finally Dr. PMR  1 comes in. She is nice, young and I think some what impressed by my medical pedigree both halves. She does an exam, gingerly moves my joints as if she is afraid they might break right there on the table.

Then she drops the bomb. So Dr. PMR 3 does all our complicated injections. I must have done a POOR job of hiding how crestfallen I felt. How much I felt like crying because she followed with I will call him and tell him your story and get you in today or tomorrow.  I am impressed but skeptical. Then the nurse comes in with a list a mile long of how I need to be NPO, have a driver, stop all pain medicines.  I am so frustrated. This is not major surgery. No one is coming near me with a sedative for this. I just want to be able to go to work….please. I don’t want narcotics, I don’t want acupuncture , I don’t want your pity, I want to be able to do what I love which is take care of sick kids.

I live furious and frustrated. The next four hours were a low point of the saga. I cried. I watched Glee. Then I cried. Then I watched more Glee.  Then I cried. Then I changed my shirt, took the dog out and went to see my boss.  Without crying, I told them that I need medical leave sooner than planned. I wanted to prepare for the reality that I could not perform the miracle of my third year of medical school again and starve off surgery.

Then I went to lunch, the aquarium and a baseball game and went to bed.Woke up ate pancakes, went shopping.

My roommate is working nights and has been following the saga and came with me as my driver. I mostly stayed NPO.  I registered and they asked me if I wanted MD behind my name. I shyed away from flaunting it. I got called in by a nurse in blue scrubs. She took my history, I adamantly refused sedation. She told me I was inspirational (in which I died a little bit on the inside). I changed into a gown.  They take my blood pressure…its a 100/60.  And they marvel at it, I mention that is normal for a 26 yo who when well exercises regularly. They stare at me as if I am some kind of alien.

They make me sit in a wheelchair to go the 40 feet to the procedure room. Dr. PMR 3 comes out and he shakes my hand. Dr. PMR 1 had called him, he knows the story. He tests the strength of my right leg. I hop out of the wheelchair while four people dive to support me. I brush them off, walk to the table. We talk about my life plans and they refer to me as Dr. My Name. We shoot a couple of pictures with just a probe. There is a silence. I cran my neck to see the pictures.  I see nothing but what I expect to see the hip is eating it self. The eyes over me are mixed with disbelief, pity and shock.  PMR 3 notes I am craning my neck and breaks our silence by having her move the monitors so I can see. I know I should be scared out of my mind but somehow I am rooting for the dying hip. I whisper internally just 9 months, we just have to get through 9 more months….

The shot is nearly perfect, he does a perfect hip arthogram prior to the injection the magical kenalog that will give me four more months of being just another pediatric resident. It will get me to my 27th birthday.  I make a jest as he struggled for a minute to get through my ligament, saying “Well at least some of my connective tissue is working”Dr. PMR 3 says apologizes for all the NPO/Driver/drama, all of that is for epidural spine injections. He says when i am ready for the next shot he can fit me any time and I don’t need to worry about any of that. The MAs and Nurses all look a little shocked that I am going to violate scared protocol.

Then its done.  I walk back to the wheelchair, I try to get up as soon as we hit the holding area and am pushed down by two nurses who say they have to take my blood pressure.  I am starving and anxious to get back to my day off.  My blood pressure is still remarkably low in the eyes of the nurses. They painfully read through every discharge instruction and then finally release me. I drive Amy and me to our favorite mexican place and eat my two missed meals.

6 mons, 3 orthos, 2 PMR docs, 2.5 hours on the phone and so much drama for one silly 5 min procedure.     Its so silly.  so silly.

And I ask how do Non-MD people get through this system?  you wonder why people with chronic pain dont have any semblance of normal lives….this is why.

but it buys me 3-4 more months and I can’t complain.

My rebellion lasted about a week. No adult ortho would take me on as a patient. So I reluctantly went to the peds ortho clinic which was awkward but not quite so bad.  They agreed that they would care for me if I got hurt in residency and would do their best to treat me with as much respect to my double life as they could.

I went home sad and a little horrified that I would have to be brought into the trauma Bay.

Then the right hip started going…..it was a slow decline but by Feb the pain was constant. So I e-mailed everyone I could think of trying to find a doctor who could give me the pain erasing steroid shots.

The geneticist recommended a guy who did some transition work with osteosarcoma patients.  I made an appointment fully expecting to get a steroid shot but the guy did NOT do them in the office like my cowboy world’s expert in Baltimore.  He wanted to schedule it as minor surgery to happen in the OR at 7AM. I had to be NPO, find a driver. It would cost me 4 x times as much and take me out of work for two days. I was confused and a little distrustful of the guy. So I went to Baltimore on the way to Africa and got the 5 min in office version and was pain free for four beautiful months in which I hiked the Kenyan coast, snorkeled in the Caribbean and didn’t use my wheelchair at all on 2 months on the wards. Then it came back with a vengeance but this time I was not traveling through DC/Baltimore…..

I pulled it out of the garage, mounted and went to pedal.  Seering angry painful sounds came from my left hip and I doubled over from the shock of it. Tears came to my eyes.  Panic filled my head,  what I have been denying for months came to a head.  My left hip was falling apart and while it might be a bike this week it would be walking eventually.  I had been fighting the battle for months with steroid shots, NSAIDs, doctors’ opinions, yoga, prayer, positive thinking, denial, you name it. But in that moment I realized the war was lost.  At 24 yo I was facing the haunting reality that my disease was eating away at my hips, my function and my biggest fear my independence.

My parents came outside having seen me double over.  I brushed it off, got off the bike and told them I think I should get back to NC a few hours early to read over my pediatrics materials one more time and go to church with some friends.   I grabbed my bags, threw them into back of my car, hugged my parents and then proceeded to cry for 2 hours as I drove to NC.

It would take me a whole year to finally muster the courage and the trust to finally take the plunge and fix the hip. The bike stayed in the garage looking sad. I avoided looking at it.

Then finally three years later when I moved into my new house in May, my Mom bought my bike to my new garage. I mounted it briefly and was pleased at how painless it was despite the right hip is going too now. But I avoided it for a few months partly my schedule, partly it was so hot and partly because somewhere deep down I think I feared the humiliation and remind of my vulnerability.

Today I woke up at 2 PM after working an overnight and all of the sudden was determined to go for a bike ride. I went to Wal-Mart purchased a bike helmet, bike lock. I grabbed a bottle of water and I rode through the square and around the block. My neighbors stared at my bike a bit like they might stare at a circus truck and over dramatically veered out of my way.The hills around here are a bit brutal on my inexperienced legs  and I didn’t go very far. My right hip protested a little but it was bliss.

Redemption.  Sweet, sweet redemption.

I am going to do it tomorrow all over again.

I am so tired I can hardly move much less make a life altering decision for someone else’s baby.   I am so tired that despite my fleece, knee high socks and scrubs I am shivering. My body aches, my right hip feels like its going to burst and the muscles around the shiny hip are stained.  I am tired to the point that I am short tempered, angry and I can’t remember why I am doing this no matter how hard I try all I can feel is anger. Anger at the child. At the parent. At the nurse. I try so hard not but all i feel is anger. Its not the baby’s fault. Its not the baby’s fault I say to myself.  As I drag myself to the room of another sick child, I can’t remember the child’s name and awkwardly refer to them as “the sweet baby” or “pretty little girl” or “buddy”.  I am covering 60 kids and I am on hour 23 of call and I just can’t bring myself to care beyond just making it another two hours to sign out when my comrades will get there…..and beyond to 7 hours from now when I can go home and sleep in my warm bed….

I look down at the baby, someone’s child and all I can think is how did I get here and why am I going through this torture.  Where is the compassion I had in medical school? Where is the excitement I had in college? Where is the dream?

I am making preparations for Kenya. I am counting down the hours till I can pack up my little CRV and drive across the mountains home for a night, north for a precious and much needed steroid shot and then boarding a plane to take me EAST…..

and then SOUTH. to warmth.

escape.

to more sick children….but somehow in Kenya its different.  Maybe it waking up to the Great Rift Valley with the mist burning off the smoldering African plains, maybe its the craziness, the chaos that is a hospital in rural East Africa, maybe its the grateful smiles of every parent, maybe its quiet morning prayers. Maybe its that life exists on Africa time.  Maybe its that I can’t call for 20 consults.  Maybe its that the internet works ON A GOOD DAY only. Maybe its because for a little while I can be Amy again not Amy the super intern at a top program or Amy who wants a competitive fellowship or chief spot.  I can just be Amy who knows some medicine, who knows what its like to suffer and who works to find some way to bring those things together in a productive way that brings healing. Maybe I can just be.

Its the 4 AM of my 12 month internship and I am tired, cold, sore and angry.

so I do the only thing I know how to do….fly, fly, fly away to somewhere life is harsher yet simpler.   Somewhere that i knew and learned compassion and that I pray will be gracious enough to teach and humble me again.