“….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.

I lied.

I actually love it. The medicine is acute, fascinating and finally teaching me all the physiology that never quite added up for me in my textbooks.

Second Lie:

I do care about what happens job wise in 13 months. And as I brave as I sound. I have only begun to come to terms with how hard it will be to leave a place like where i work.  I would leave the best all around children hospital in the world, anywhere is going to be a change.  Moving to Africa will be bit like academic suicide or at least feel like it. Above all its kind of scary even though its a dream.

there I told the truth

While becoming a doctor has been the fulfillment of a dream.  Its not the only dream I have. And in 13 months for better or for worse.  I will be done with my required education related to that dream. Thank GOD.

What I want to do in terms of earning money to eat and maintain health insurance in 14 months is unclear exactly. And honestly I have gotten to the point I just don’t care (I mean do obviously I have sent out countless global health applications and tried relentlessly to create my own academic peds/global health fellowship but in the end as long as I get to take care of kids for some percentage of my day to day life, I don’t care the details much anymore).

What I really want to talk about is everything else I am going to do….

I have the following list thus far:

~Sleeping on a regular basis like every night… or at least at some point during the 24 hour period. Beyond being overseas (which is different), I am going to do my utmost to never work in house 24 hour+ call again.

~Finding a church/community that will not stone me for being a pacifist, a children’s/minority/disability rights activist, for thinking women have a role in church beyond raising babies BUT still believe in Jesus….

~On a related note, becoming a part of/forming/etc a Christian woman’s ministry where talk about something other than getting married and raising babies (both of which I would like to do but that I think are not actually my reason for existence (which is of course, glorifying God)).

~I would like to live in intentional community FOR REAL. Not just sort of halfheartedly

~Going back to Romania, find Aurel, Christine and Rapheal. And even if it requires 12 hours on a train, go see Laura’s Grave. Pray there and thank her for the vision she gave me in our short time together. Tell her I became a physician and that I carry her with me every time I speak for our people.

~Going back to East Africa and I would like to take my family with me.

~Live Abroad for at least 6 months but up to forever subject to God, my cartilage and all these other things.

~Writing THE BOOK that I have been talking about for 10 years even if it means I have to tell the truth about how bad medical school was at times

~Spending at least an entire week in the Outer Banks at my Grandfather’s where I eat fresh sea food every night, go sailing with my Granddaddy, losing myself in the Elizabethen Gardens and then waking up and doing it all over again.

~Spending a week with my Paternal Grandparents either on a road trip (they love to drive across country) or at their home. Learn to cook from my Grandmama (again!) and talk theology and writing with my Grandpapa.

~Spend some time with parents. Going on a Father/Daughter trip with my Dad that has NOTHING to do with trying to become a disabled doctor/pioneer/take some nasty exam.  Hang out with my Mom, listen to her and not spending the entirely of time together  with me venting about how much my blank rotation the previous month was the worst thing that ever happened…./her caring for me after some life altering, horribly stressful (for all involved you imagine watching your first born go under anesthesia 25 times+ ) and painful medical procedure.

~Go back to AAMC with protest signs/hunger strike if necessary and say they need to get over their able-ish and put a disabled physician on the committee for disability (GOD FORBID we actually have representation) and be a some what gracious but fierce activist with impeccable credentials (you can’t argue that I am just a med student any more, I will be a board certified pediatrician from of the top programs in the world). (this may or may not be related to the BOOK project)

~GO on a trip with just Emily and Victoria. Even if its just to a Holiday Inn in Vinton (which is like 10 minutes from our parents’ home)

~Go on a medical mission trip with Jessica

~Go visit my friends in Oregon

~See the Grand Canyon (actually going next month a year early)

~Really learn how to cook rather than occasionally dabbling

~Go on a silent prayer retreat

~Write some travel writing type essasys

~Go to Ireland

~Get the Sacred Tuesday Group back together for a crazy retreat/reunion/celebration somewhere (ANYWHERE)

~Help write some transition related stuff for kids with skeletal dysplasia (ok so nearly work related…but I have come to the stunning conclusion I might be the only human being currently alive who actually can/wants to do this)

~Read SMART books that are not about medicine

~Relearn all the theology/religion major stuff that I have suppressed in order to make room for the Krebs Cycle and organic chemistry (worthless)

~Need some sort of theater in my life again beyond the annual Long Family insanity known as MY MOM’S CHILDREN THEATER PLAY WEEKEND

~Figure out my opinion about about the laundry issues of social/theological issues that have come up in the last 7 years that I have not had time to research or pray about fully.

~Successfully plan and care for a garden without having either things die due to neglect or never getting it in all the way due to time constraints

~Go to the San Diego Zoo

~Read all the books on my list (really long)

~Learn to play an instrument (even if Emily says there is no hope for my deaf little ears)

~Buy a hammock, lay in it.

~Go through the phone book of where-ever I am living particularly if its a large city and eat all the different ethnic food restaurants from Albanian to Zambian.

~Make a recipe book of all my favorite Romanian/Russian/British/Scottish/Chinese/Kenyan/etc dishes that I have accumulated over the years from all my travels

~Take a photography class or at least dabble more officially

Longer term goals:

~Get married

~If that doesn’t work out, adopt anyway

~Scrapbook/Journal/DO better keeping up documenting

that’s it for now but this list will be growing over the next 13 months. Stay tuned.

2. Mountains calm and center me.

3. As much drama on and off the stage….Parables was one of the greatest things that ever happened to me. The people are my second family (along with Sacred Tuesday crowd). I can walk into a room with two parables one of whom I have barely seen in the last four years…and pick up right where we left off. Within 5 mins we can discuss death, books, chest tubes, Jesus and Africa. Its like coming home after a long trip.

(side note…10 mins in someone says…so do you want a team to go to Africa…because I think we should go….!!!!!!!!!!!!!!!! (squeal)….much prayer and contemplation)

4. I fail at relationships of the romantic variety.  If I have one more guy-girl relationship that turns into an awkward guy-girl friendship I will need therapy because i will no longer be able to hold myself in from doing something I will regret (like hitting people).  OH MY HECK. I am going to die an old maid (but with the greatest friends).

5.  There are functional churches that love people, Jesus, are made up of multiple races, political ideals and generations….they just don’t exist in this CITY.  But there is hope that at some point in my life I might live somewhere that has such a place.

6. Used book stores are AMAZING. (WHERE ARE THE USED BOOK STORES IN THE MIDWEST?!?!?!!?!?!?)

7. I need to talk about non medical things more often.

8. Board Games….why did I give you up? (MED SCHOOL…booo!)

9. Theology…..why did I stop studying you?  (MED SCHOOL!! booo!)

10. Can we do this again next weekend??? if only.

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…

In the tendrils of early morning sunshine, a few neighborhoods down the road toward work, in front of the large cathedral, there kneeling on the stone steps was an elderly African American man praying. He was dressed all in blue, it looked like a uniform, perhaps even the navy uniforms of the hospital janitors.  I stopped at the stop light and couldn’t help watching.  I wondered what brought him so early to the steps of this massive church, I wondered why he did not go inside?  Was it closed? Did he not feel well dressed? Did he feel he would not be welcomed inside? Was there not a service till later and he had to go to work just like I did? Was it because it was holy week?  Suddenly, he crossed himself repeatably, great emotion filled his face. Was it because he had some great supplication for God? Was someone ill, dying or in peril? Had he done something he was ashamed of, was he begging for forgiveness? Was this his confession? Or maybe they were tears of joy? Was he overwhelmed by the presence of God?

I felt embarrassed like I was spying on someone private conversation like when you walk into an exam room and your colleague has just told Ms. Jones their child has leukemia and you just needed an otoscope tip. I wondered about my fellow drivers around me, commuting downtown to work, what did they see? What did they think? Did they notice this Man crying his heart out on the stairs?

What about the people inside? Where were the priests? Where were the nuns who taught at the school next store? Were the children inside looking out their windows at the man on the stairs?  Were they wiser than me, knowing not to intrude on this man’s pleading?

In Eastern Europe, the gates and stairs of the Orthodox Churches were filled with beggars, elderly people and disabled people who begged for money of the priest and the church goes.  I remember in one of my bitter moments of frustration with the culture, the lack of care of the forgotten children who would be baptized but never cared for by the churches, I felt far more comfortable on the stairs then inside.  I arrogantly thought Jesus would too.  I thought to myself now years later, that I was right Jesus was with the beggars, the prostitutes on the stairs and the unwanted more than the religious authorities. I knew even that Jesus and later the apostles had interacted with the beggars at the Temple’s gates. What I lacked at 19 yo was the insight into the people that lived on the steps of my church. The fact there was many in America who because of their heritage, the color of their skin, their language, their sexual orientation, their bank account, their addiction, etc, etc were not welcome either because of stigma, hypocrisy or fear in our sacred spaces.  God welcomed them but we do not.

Even more, I lacked the understanding that we all belong on the stairs of heaven, none of us measure up not due to our social classification but because of our selfishness.. All of us should be sobbing amongst our transgressions and the ugliness of our hearts on the stairs.  Holy week is a celebration of grace. Jesus welcomes us through his loving self-sacrifice inside the gates.  Jesus came down the stairs to invite us but he also still sits there.  He is there on the stairs and when we invite the others on the stairs to share in his grace and compassion, we invite him to be among us.

I prayed a short prayer at the red light for the man on the stairs. A prayer of gratitude for his example, for his courage and for grace, for our shared celebration of Holy Week that I knew I would remember far more than the third refrain of the UP FROM THE GRAVE HE AROSE on Easter Sunday. I prayed that Christ would sit with him on the stairs and meet him in the heart of whatever his circumstance. And that he would sit on the stairs with me, as I confessed my unworthiness, my failings and my need for him.

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.

But on my third month’s of sleep deprivation in a ROW, I am anxious and a wee bit strung out. Easily in a state of anxiety. Somewhere in the mist of all that I finally got the courage to try out different churches.
My second try, I met a Kenyan and  a Ukrainian, we talked East African tribes, Swahili , sekuma (food item) and the Belarussian dictators, freedom of speech and about my Romanian babies. It was like coming home by remembering leaving home.  The Americans I met were nice too.  The church is less than a mile from my current one.

The Kenyan and I are getting together and making Kenyan food next Saturday so why do I feel anxious and why oh why do I feel sad about leaving a place that really not supported me well and/or theologically fed me entirely. Is it just because its March and Im exhausted? Is the Sam’s Purse situation? Is it the people I am leaving behind, one family in particular who is one of my best friends from the residency program?

or is it that I should just be the voice of change for the next 14 months and just stay where I am because no place is perfect? And either way I have new Kenyan friends….

That I appreciate my scars for the story they tell.
That I value the oddly shaped contours of my poor long bones.

That I love the strange angles that my contracted ankles and elbows grace me with.

But I would be lying.

But then again I have been lying a lot today.

All three of my best friends are getting married in the next 18 months.  Today I went to get fitted for my first of several bridesmaid dresses at the infamous David’s Bridal which has never been my favorite.  The dress is sleek, asymmetrical, one shoulder empire waist canary colored gown.  My shoulders have some impressive scars. My elbows are awkwardly angled. All around me are girls with shoulders with no scars, with normal contours.  And for a moment I feel naked, exposed and ancient.

I rip the dress off, buy it (ugh!) and run home. My best friend who knew I was going dress shopping calls me all excited. I try so hard to keep up the level of excitement because its her wedding.  And I want her to be happy.   She nearly drags it out of me, I dance around the issue a bit, mumbilng a bit.  She tells me I can return the dress, I can wear a shawl.  She is upset.  I tell her its fine.  SO FINE.  DOn’t worry about it, its not her, its not the dress its just me.

My disability mentor Bliss tells me  that I should embrace my body and I wholeheartedly agree.

Its the practice that sometimes hard, especially when you are in your 20s and have to wear frequent formal wear not designed for anyone but especially not for bodies that are different than average.

One of my friends here who has Marfan’s and some other skeletal issues has had some “work” done on several scars.  I wish I had her courage, however, the whole starving children in Africa and my intense PTSD/extreme dislike for being a surgical patient rule this out. She tells me either way that my feelings are normal.  I want them to be normal but I also dislike the idea of hating the body I have.

Because in my head I agree with Bliss, bodies are beautiful in all shapes, sizes and with many marks and contours that tell our stories. So I pray God gives me grace to love my body and help others love theirs.

i’m getting married in chacos and capri pants.

OK so maybe not capri pants but chacos and a dress that drapes my shoulders a bit and doesn’t make me feel like a member of an alien race.

from July…although hauntingly still true.

Long ago and far away I spent my summers wandering the streets of Bucharest playing with street kids, finding babies in back rooms of crumbling, stifling Soviet bloc hospitals. These summers defined me and it was here the dream was born to be a really excellent activist and pediatrician who could save babies from disease and from the poverty and stigma that they live under.    Then somewhere along the way I got caught up in a dream to study at a world class childrens hospital and caught up in all the academic rigmarole and danced the dance and sang the songs and won my way into a place that is so far removed from the  that dream that sometimes I still wake up and have to remind myself that I am not living in an alternate universe.

I am bruntout on the alternate universe. I am tired of staying up all night. I am tired of parents telling me they want me touch their children with my inexperienced, tired hands. I am tired of getting e-mails in my box that I only reviewed 9 systems in my review of system rather than 10 and the ED attending can’t get paid if I only have 9 in my note. I am tired fighting to put checks in an imaginary series of check boxes to fit some sort of magical mold that an elite pediatric resident is supposed to fit. And I keep waking up with a start because in my dreams I am doing what I have done every summer for the past 7 years up till this one, riding buses and fighting for forgotten children.   Suddenly in stead of falling in love with academic medicine or fellowship or something will give my pre-existing condition gimpy self sustainable health insurance I am missing as if I have lost my first love. As if we are painfully separated by a dream not deferred but given up and revised.