That look in your eyes

At the end of my palliative care rotation, I helped the professor clean up after our project presentations.  He looked at me, I looked at him. He makes an awkward allusion to my disability and the story I had just shared about my friend Laura. I tell him I have a genetic form of degenerative joint disease.  He pauses, his eyes are kind and for a moment we share something that is rare outside of my tribe.  “You really understand, you get all of this.” he gestures beyond the pile of projects, reflections ranging from photographs to scripture to paintings representing our palliative care experience ranging from the sacred to the mundane.

“….Yes.” I took my project from the pile and walked to my car in the fading November sunshine.  Shivering.

At the time I was 24 year old and slowly and painfully coming to grips with my failing joints and tasting the bitter, raw fear and trepidation of my own fragility and mortality.  I met a lady with RA who was in her  70s, going blind and had no hand function earlier that year and she had shattered any illusions I had of somehow being through the “worst of it” with all my childhood surgeries.  Then there was my 28 yo Romanian friend who died and a year later there would be the 18 yo with muscular dystrophy who was my first pediatric death on my watch.

I savor life differently.  I savor work differently. I savor normalcy like cooking good food,  wearing clean clothes, brushing my hair, going to church, buying my own groceries, paying bills, good conversations.  I savor and fight for weekends with my family, taking that road trip my sister and I have talked about for years even though its expensive,  moving to Africa for a season  I savor them and don’t waste time because I know that my destiny according to society was to live in my parents’ basement and because as anyone with a progressive disease knows, I never know how long anything is going to last.  My new hips could last 30 years or they could last 6 more months.

Its a crap shoot. Its a gamble.  Its anyone’s best guess.

So yes, I get it.

But don’t fool yourself, it doesn’t always make me a better doctor.

20 something yo with a neuromuscular disease that most people die from in their late teens who isn’t eating anymore, in constant pain and at one point last night said ” I want a ventilator, I’m going to die tonight.”  I couldn’t control his anxiety, I couldn’t seem to calm his breathing and I couldn’t seem to tell him the truth which is he is dying.  He knows, I know, his family knows it (although adamantly deny it), God knows it. Everyone knows it. But we are not talking about it.

I get that too.  Because I don’t talk about it either. I don’t talk about what life will be for me when I am in my 50-60s and the hips fail or my  hand arthritis is so bad i can’t palpate babies’ bellies anymore much cook, clean,  drive, etc. I don;t talk about how I sometimes worry about burdening my sisters or if i was to get married with this. And i don’t talk about how much sometimes it sucks and how scary it is to watch your body fail you and become steadily more deformed with your body attempts to grow bone or muscle to support what it can’t repair which is the crappy cartilage all the while when all your friends are having babies and wearing skimpy wedding dresses that show off their beautifully unmarred bodies. How I am happy for them but somehow all the more painfully aware that I will never be like them and my participation in their world is fragile.

I don’t REALLY get it, I don’t claim to know his experience, I ‘ve only had a taste of the feast he has been forced to ingest.  But the taste is enough to know that the other thing is while all of us medical people wonder how WE GOT HERE medically, why no one managed to talk this family into a plan, to know this young adult’s wishes….the tribe part of me that can look into his eyes and for just a moment stand in the abyss with him knows that we are here because not talking is what’s been expected of us, for the sake of normalcy, for the sake of sanity. Talking about losing function or dying young is just not what we want to talk about around the dinner table or even the examination table.  Its not the RIGHT thing to do but its what makes everyone else comfortable.

I wanted so badly to make it better for my patient, I called palliative care, I lingered at the bedside. I prayed.  I whispered to Laura to please care for him when he goes.

Because this is where the pollyanna, cute little kid in a wheelchair, chronic illness, Jerry’s Kids, Life time Origninal movie, inspirational memoir, NICU baby, special olympics thing ends.

This is the hard stuff.  The ugly stuff, the things that keep us up at night, the things that challenge our sense of right and wrong.  But for those of us who live with a taste or with feast of it, its the stuff we so desperately want to not bear alone. Don’t ignore us, don’t pretend it doesn’t happen.

So walk with us….look at us…take a moment and get it. Just a moment.

Stolen Idenity

When I was in medical school, every day was HELLO…(awkward stare)….yes I am the token med student in a wheelchair.  Can we get past this?  Because every where I went (even peds) we talked about this continuously.

Then I came here i was doctor and no one really ever asked any questions.

and for a while it was amazing. Very liberating. To make matters even more amazing, I had a new hip and was walking more and more and more till I worked my way to a second hip.

Then somewhere in the mist of a new hip…3 straight months of ICU/step down units in the middle of a midwest winter….I awoke from my liberation to realize.

oh crap.

while I do not want to be a primary care doc or a developmentalist or a geneticist….I am gonna be bummed if disabled children are not part of my career personally and professionally.

It took me another month and two weeks of developmental peds and a few very persistent children for me to say that aloud but here we are.

This is going to greatly complicate life.

oh well. here we go. I need a pediatrics job that lets me A. be a hospitalist, B. Teach, C. Go abroad and D. work with kids with disabilities.

here’s to the impossible…

The Brown Sandals that I immediately regretted

My feet are funny shaped. At some point in college I participated in my first foot washing in which I found myself keenly aware that my feet were not so beautiful rather then brought the good news or not.  I knew that wasn’t the point but the human inside of me couldn’t quite get past it.

I can remember the thrill of NEW shoes for school each year. I would go with my Mom on a special shopping trip before school started. We would go to Stride Rite , The Navy Exchange or JC Penny’s and we would find sneakers and then a pair School/church shoes. My all time favorite was a pair of black Mary Janes that had faint embroidery on the toe of tic-tac-toe in light green and red. I got them just in time to start 2nd Grade.  This was also the phase where I refused to wear pants, only dresses. I would accept leggings if it was cold out of necessity. So there I was in my early 90s bright colored dress and leggings and black Mary Janes. In hindsight, sort of dorky but at the time those little shoes made me feel so grown up.

Somewhere around the age of 9 or 10 when my growth plates were bending in unfortunate directions and I was coming to grips with the reality of chronic pain. Shoes started being a source of great angst.  This was also the time when shoes were changing and no longer was it cool enough to wear my black Mary Janes or My Little Pony Sneakers.  No longer could I wear what my classmates wore. All the girls were wearing jelly shoes or canvas shoes with no support.  We would go to shoe store after shoe store, nothing would fit except for Velcro sort of sneakers that the kindergarteners were wearing and not the middle schoolers.

I went through a combat boot phase in sixth grade. They were a statement and in middle school that seems to be the goal of foot wear. But they also offered my poor ankles some support. This again in hindsight was a fashion low point of my life in which I wore Christian T-shirts (that said things like Got Jesus?) and baggy jeans and combat boots.  One of the security guards who drove me around in the golf cart to band and lunch (which were a bit of a hike) commented that my choice foot wear was probably not the best thing for my feet.  I was horrified being a Type-A people please-er of adults in my world.  Thus ended the combat boot stage. Looking back, he probably did me a favor.

In high school, they started introducing the concept of FORMAL WEAR.  I knew I was in deep trouble the first time I went shopping for shoes for my first prom. Strapy, stringy, heeled plastic things that cost 70 dollars and were a tibia fracture waiting to happen. My sweet mother dyed ballet slippers for me. They had no support but they matched my dress.  I survived without any ER visits.  Then there was the uncovered shoulder ISSUE (previously described) in which I showed my keloided scars to the world. I was not a fan. As if I needed to be more of a freak show.

I then went through an extended phase where I just decided I hated dressing up. Sad thinking that in elementary school, I wanted to dress up and be girly EVERY DAY. I decided I was going to be a hippee who wore peasant boluses, carpi pants or longish skirts and grow my hair (already longer than most girls) longer.  This sustained me through the beginnings of college where I at least in part to thanks my mother and sister switched the hippee skirts for cuter knee length numbers for the Carolina sunshine.

I vividly remember kicking and screaming my junior year of college when all my friends and I decided to go to the Non-Greek formal. My roommates had to nearly  hold me down to put my hair up and do my make up. WE have pictures and evidence of this.  I wore mary janes that I also wore to interview for medical school in. As for interviews, I was so grateful for the stylish gray paint suit for interviews. my grandmother and I found in an expensive store in the big Mall in Norfolk that covered most of my shoes and all of my shoulders.

Then came weddings. It was prom on steroids except now the pictures will actually matter beyond the age of 18, someone will be looking at them for the next 50 years. And those people are my closest friends.  The first wedding I was in had brown dresses which while I did not love, I loved that I could wear small brown flats without concern.  Then I was in two weddings where I was thankfully allowed to wear black and red and thus black flats.

In medical school everyone got cute Danskos and such for the wards. None of  which I could get my feet in. I became mildly obessessed with KEEN shoes. Black and Brown Mary Janes that I wore to pieces in Kenyan Mud. I wore black chaco sandals to my doctorate hooding partly by accident (left my black flats in the car) and partly out of sheer spite of professional shoe wear.

Then came this year. Summer wedding. Yellow dress.  My big toe on the left has this gout like bunion on the metatarsal joint that makes even ballet flats uncomfortable. Again the strappy, string, heeled things are going to be a disaster. My friend tells me you can wear anything but CHACOS.  I go to the comfortable shoe store here and to my horror the only thing they have is a pair of brown Chaco flip flops. I was post call, on my way home for the weekend which included a dress fitting. I was out of time. So I bought them. They didn’t look like CHACOs. They look liked brown flip flops. 20 minutes later I was already regretting spending so much money on ugly flip flops.  My Southern Bell (on occasion) mother gritted her teeth when she saw them. She would later tell me that she had already decided that there was NO WAY I was walking down the aisle in those horrible shoes. I reminded her that at least they were not combat boots.  I got fitted for the dress in the shoes. And then promptly returned them when I got back to OHIO.

I decided at this point I was going to go bare foot. Meanwhile, my PT here when I got my initial post op eval was MORTIFIED that I made it through life so long without orthotics. I told her I had PTSD from such things as a child. She chided me, throwing the whole MD thing at me. I relented and found she was right my feet felt better. On the up side,  I recently discovered that I could wear wedges when I was given a pair of Allergia shoes for work. I loved them so much I bought a second pair in another color. For the first time in my life, people complemented me on my foot wear! I felt strangely like I had in second grade over those dorky tic-tac toe mary janes! So proud and grown up. Oddly, one would think I would get past this, not so much.

With this in mind, I prepared myself mentally for another go shopping again to look at spring wedding shoes.  There had to be something out there, if I could find professional shoes that were NOT so bad, maybe there was hope. One pretty spring afternoon walk resulted in the purchase of a somewhat NOT awful  pair of sparkly sandals with a slight wedge.  My mother approved via cell phone pictures!!! Even my bunion approved with the adjustable straps. I breathed a sign of relief that the pain of shoe buying was over for another year. Already plotting that I could wear the SAME shoes for the Indian wedding I am scheduled to be in next Spring. Maybe I can make it two years if I didn’t wear them in Africa.

As I walked out the of shoe store, I looked down at my feet in CHACOs no less. And I smiled, you know they are funny shaped and they cant wear shoes to save their little soles. But they have grown on me. We’ve been through a lot together. They have gotten me where I have wanted to go, where I have needed to go without cartilage and against the laws of bio-mechanics.  Yes they are calloused, crooked and lumpy but they also tell my story with their stronger contours.  They tell a story of faithfulness even in the mist of suffering. And maybe that is the point.  Maybe I have beautiful feet that tell a beautiful story after all.

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.