Joy in the Morning

Three years ago when I was in the mist of my third year of medical school. I went through a 2 month period where I rarely slept more than a few hours at a time. It wasn’t the call schedule, it wasn’t the stress of residency applications or Step 2, it wasnt even entirely the pain that gnawed my left side at times to the point of tears. It was the creeping waves of anxiety of a young doctor to be who knew exactly what was happening to her in exquisite detail. In my minds eye I could see the holes in the cartilage, in which glistening white bone lay naked and scraped. The dying cartilage and wounded bone making something akin to broken glass in a small tight dark space lacking adequate blood supply for even the chance of healing despite my immune system attempts, in the end the immune responders led to an army of inflammation and pain.  I dreamed about this.  Then I would dream of the OR a place that as a med student I always felt like an escaped patient masquerading as a young student doctor to be. I had a recurrent dream that I was found out, carried down the hall, stripped of my scrubs and then rolled back to the OR screaming that I was just not ready but no one heard me.

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.

Going Home

I gave my annual lecture at Wake Forest last week. It was a beautiful tapestry of beginnings and endings of my life.

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.

Thank you for climbing the mountain…now please jump off.

I have been the queen of life plans.  All my medical school classmates went through periods of secretly hating me because I had a life plan that was scripted to the nth degree while they wandered amongst specialties .  Since I was 14 the goal was be a doctor and since I was 20 the goal has been be a global health doctor.  There were some tangents like the phase when I was confused about the global health part and thought about div school.  But all in all the foundation of my day life has been centered on those goals for the last 12 years.  I studied for SAT and the SAT II and the AP EXAM and then I overachieved and tried to save the world in college. Then I studied for the MCAT, then I bought a suit and talked my way into medical school. Then I overachieved in medical school and tried to save the world again.   Then I bought a better suit and talked my way into  a top pediatrics program that gave me money to try to  save the world again, this time for real. Mission accomplished.

Now  I am the doctor and I am in a global health pediatrics program.

Well snark it.

Now what do I do?

Everyone else has an idea of what I am to do. Heck, Wake has ideas. My adviser has ideas. My PD and my classmates have ideas. My parents have ideas.  My friends have ideas.   I feel pressured and pulled and spread out over a vast array of possibilities.

But I am idea-less.  I am vision-less.  I am directionless.  For first time since I was 14 I have no idea what I want.  And its terrifying. I keep running around in mental circles without going anywhere.

Maybe that’s the point,  Maybe that’s the bottom line.  Maybe I have been climbing the mountain for so long that I am not sure how to just sit and be at the top of the mountain.  Maybe I was brought to the top of the mountain not because it was the pinnacle of achievement or the dream.  But because it was the end of my dream and beginning of God’s.  I often wonder if God stares down at me and laughs at my efforts and my mental marathons.  Not in a sort of mean or condescending way but in a knowing way. Knowing that his dreams and desires for me are far beyond what I can imagine.    Maybe my job at the top of mountain is not to roll down or even jump off but to wait….

Wait, listen and let someone with far better ideas than I dream the next leg of the journey.

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…