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.

Lies

In my last post I said I hated the ICU.

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

Post Residency Bucket List

Well the ICU is mostly what I expected.  I think my biggest problem in medicine is I am just over doing things I do not find super educational (there is learning to be had in the ICU but its hard to do when your role is to do paperwork and field pages for flush orders) and that resemble slave labor (I barely touched actual children…I wrote orders all night long…you could train a computer to do my job)….  Ready to be a human being again.

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.

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…

Body Language

I would love to tell you that I always love my body.

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.