| Surprising Beauty |
[28 Jun 2009|01:51am] |
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Originally published at Perches in the Soul. You can comment here or there. Is something beautiful because you love it or do you love it because its beautiful?? I don’t know. But if I did I could explain why I love Bucharest. Bucharest at first glance is a filthy, graffiti covered city made up of endless gray communist bloc apartments for as far as the eye can see. Beggars on every corner (although this is improving), stray dogs in every doorway. But if you look twice you will be surprised by the wildflowers that grow everywhere, the old trees spread throughout the city, the gardens in each balcony and each little yard, the children running down the wide sidewalks and colors of clothes on the line, bright curtains, ads that mask the gray. I love this city.
Maybe its because I love its people. I love to sit on the bus or the tram or the metro and watch people. Romanians are proud and always dress up to go outside their house. They are fiercely protective of their children (yes a bit ironic) and although they don’t smile enough for my liking at times when they engage you they are warm and will probably invite you to dinner.
Maybe its because I love the children. I am back at the baby hospital again this time. I could spend all my time there and be perfectly happy. These children resilience, their beauty, their capacity for love when they have not been loved has always given me a window to the divine yet also of the silence desperation of the orphans. I thought it would be harder being close to the end of my training but its better somehow. Even though I at times know the grim statistics these kids face, I also know of their potential first hand. I cling to that at times because I believe they cling to it too. They know what they want beauty and love over despair.
Perhaps its because I am an American and optimist that I see such beauty in the mist of such drabness and pain. I probably sound hopelessly naive but I am not as much it may seem. I know the dark side I am just surprised that there can be such dichotomy.
I hate to admit this but I need Romania far more than Romania needs me. This place has always been a place of such spiritual and emotional renewal for me. I think its how simply I live when I here.
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| Why the world is messed up Part 1 |
[25 Jun 2009|02:44pm] |
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Originally published at Perches in the Soul. You can comment here or there. I love this country and only God knows why.
I walked into the pediatric oncology ward today and the first patient I met had a brain abscess of unknown pathogen origin but since she has cancer it could be a very, very bad bug. She was in a room with two other leukemia children one who was questionably neutropenic (no immune system). I was really, really upset. I get the whole limited resources concept. I get the whole this is not America concept but I can’t turn off the little doctor in my head that says this is a way to kill three children for the price of one. We painted their faces and make necklaces and bracelets and it was the only child life (hosp playroom) time these kids get. Their parents make their meals, give them all of their oral meds, wash them, clothe them and do all beside care that does not involve the IV pump. There are no portacaths so the kids get IVs perpetually. I was pretty saddened by the whole thing.
Especially in light of story number two. So ‘Mike’ is 16 and was my bosses’ first patient here back 1994. He has a stricture (a narrowing) of his esophagus. He needed surgery to fix it but he had to grow and there were no surgeons in Romania any way. Finally they found someone to do it after a more than a decade of suffering and being told that there was nothing to be done but wait for death, they found someone. Health care is supposed to be FREE for all children under the age of 18. And by FREE they mean that if you want your child to live the hospital alive after major surgery try a 3000 dollar bribe. That’s more than most families make here a year. And it needs to be in cash and by the way it’s all under the table so the doc will never pay taxes. The missionaries, the boy’s community and his parents have scrimped and saved and raised the funds. The boy survived the procedure and is in the ICU. The only words the surgeon told the mom was the esophagus was dilated before the stricture, we should have done this years ago. The mom has to pay a bribe every time she wants to see her son. 3000 under the table? And the mother can’t even be with her son???? 3000 untaxed dollars in a country where children with treatable cancer die because they can’t pay bribes for isolation rooms.
Don’t get me wrong I know America’s health care system is broken. But at least it is mostly honest. I mean insurance companies are evil but they are upfront about it. I would take truth even it means capitiolism runs health care over corruption running health care any day.
Also this http://www.wxii12.com/video/19854698/index.html watch it… and count the number of time they use the word inspiration or something similar. I know this girl, she is a friend of mine, and she is extremely kind and generous with herself. But I post this because it’s such a good example of America’s idea of disability. I can be a cursed beggar/prisoner of an institution or I can be a poster child for a Disney movie.
God Bless America……and Romania
Good grief. Dear God please tell me there is some happy medium in the world where gimpy people are not martyrs but rather teachers, parents, doctors, lawyers or whatever they want to be when they grow up. And no one finds it extraordinary that they managed but rather find it extraordinary that anyone would think otherwise.
….there are many kinds of freedom, and even more kinds of slavery.
End Rant.
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[23 Jun 2009|12:46pm] |
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Originally published at Perches in the Soul. You can comment here or there. It is a lovely Tuesday night in Bucharest. Emily and I have settled in well. We got our clearance for the baby hospital today, we start on Thursday. Emily has been busy with school, I have been busy with clinic. I already know at least one reason why God has brought me here this time. One of the new social workers at the clinic has a 22 yo sister with Cerebral Palsy who is brilliant but is stuck in the complicated system of being disabled in Romania. We will go visit her in a rural village on Sunday. I have done lots of physicals on missionary families, Romanians, Turkish, Dutch, English diplomats. Tomorrow we will do the whole Mormon missionary force in Romania. Its fun work. I assisted on a small surgery today. The only sadness is I cannot get clearance to go work with the disabled children from last time. The one child who I had a special relationship with though has been moved to a private Catholic orphanage and I am hoping to get clearance to go see him at least.
Things are slightly better accessibility wise here. There is a van with a lift to help one get off the plane and lift into the terminal. I actually rode down the whole street today by myself in the green machine, curb cuts the whole way. I almost had tears in my eyes. Such freedom, my people here have never known such physical freedom. I learn so much of spiritual freedom from these simple things. God wants to free us from our sin and our own selfish selves but we have to let him tear down the walls (the curbs) in our life. I think often of my friend who was my initial introduction to the plight of my people who died soon after I met her. I am sad she did not live to see these days but happy to know she is with the Lord. We still have a long way to go education and health care wise, but enviromentally they are making an effort.
God is doing interesting things in my heart. I love this land and I love Eastern Europe. But Romania is chaning rapidly. Romania will need less and less missionary doctors over time. The medical missionaries who run the clinic are thinking about retiring. There is still much work to be done here but I am not sure if this is where God has me to come for the long term. So where Russia? Ukraine? Africa? I recently received an e-mail from one of my future supervisors in Africa he is asking for pediatricians with a passion for the disabled to run a rehab center in Tanzania, they want to start a series of these throughout the continent. I am going to work in one of them in Kenya in Jan. They were very clear, that my elective is a window to employment, they are almost recruiting me 5 years early it seems. Also on my way here, I ran into a guy who works for Samarthian’s Purse who gave me his card and wants me to e-mail their medical missions dept. It seems possible jobs are growing on trees at the moment…
,.,,,there is so much to tell about being back here and about Spain and Italy and France…but it will take me a while to get back to speed with my blog. I am also writing my reisdency personal statement wich is a painful endless process.
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[10 Jun 2009|10:36am] |
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Originally published at Perches in the Soul. You can comment here or there. Boards OVER.
Leaving Roanoke in less than 24 hours to drive to Dulles to fly to EUROPE.
Leave for Romania from Spain in T minus 11 days!!!!
so happy right now.
New photo site for the year of insanity:
http://amyadventuresabroad.shutterfly.com/
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| why freedom matters in Belarus…Georgia…Romania and Beyond |
[31 May 2009|10:00pm] |
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Originally published at Perches in the Soul. You can comment here or there. There was an article about Belarus in The Wall Street Journal this weekend!!! I am pleased to hear that people care. Because it really does matter and its not just the principal of thing. The article talks about how what happens with Russia’s future is an inside and outside political game. The outside is the former soviet republics and satellite nations like Romania. These countries are what separate Russia from Europe and really from the rest of the western world. These countries are small and most Americans probably couldn’t pick them out on a map but their freedom is essential to peace and stability in the region and really the world. Russia has cut down on religious freedom and freedom of the press in recent years, all NGO (charities, churches, human rights groups) have to register with the government, prominent journalists have been killed in the dead of the night. This may not make the evening news 7000 miles away in Washington but it matters.
Why you ask? The usual reasons things matter in foreign policy: oil, power and blood. Russia controls a big part of Europe’s oil supply and the oil passes through many of the former soviet republics. Russia has friends like Iran and China. Russia is becoming better armed all time and already has increasingly bad human rights record. I am not suggesting that we as the west should go in and try to mess around with the region and play police or micromanger for these corrupt, struggling infant democracies but we shouldn’t take them for granted.
Let’s all remember that it was our indifference after helping the Afghans win against the soviets that brought us the Taliban…
not the same situation, but the same principal. The battle for a free whole Europe is not over, its really only just begun.
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| ….I want to get off the boat. |
[28 May 2009|02:57pm] |
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Originally published at Perches in the Soul. You can comment here or there. I am exhausted by labels. I am exhausted by categories, by worldviews and clashing worldviews. I am exhausted by the need for debate for endless arguments for intolerance of tolerance of intolerance. I want so much for my beliefs for my walk with Christ to be nothing more than my walk with Christ. I try to peel off the layers of dirt, mire of pride of ambition, scabs and dressings of culture and politics in search of truth but I so often find myself lost amidst the gauze, plaster and mud. Where is a faith that is simple? Where is a love that is unhindered by politics, rules of decorum and a constant fear for our own personal safety and liberty? Where is a truth that is not seen through the lens of culture, not blurred by lines of indifference and by the institutions that we hold dear? Where is the church that is living in faith, loving in and out of their faith and seeking unobstructed truth?
There’s tarnish on the golden rule
And I wanna jump from this ship of fools
Show me a place where hope is young
And a people who aren’t afraid to love
This world has nothing for me and this world has everything
All that I could want and nothing that I need
This world is making me drunk on the spirits of fear.
So when he says who will go, I am nowhere near.
And the least of these look like criminals to me
So I leave Christ on the street
This world has held my hand and has led me into intolerance
But now I’m waking up, but now I’m breaking up But now I’m making up for lost time
Caedmon’s Call
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| I LOVE TRAFFIC |
[23 May 2009|07:16pm] |
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Originally published at Perches in the Soul. You can comment here or there. When my sister and I were in Romania two years ago we had a running joke about how much I (we) LOVE TRAFFIC!!! Bucharest is filled with traffic. In the communist era there were quotas on cars and folks would sign up years in advance before being allowed a car. Now in the new Romania everyone who is anyone is buying a car because anyone can now. The result is constant traffic everywhere even on public it takes hours at times to get any where. The buses/trams are incredibly crowed and hot. It frustrated and worried us terribly (of getting mugged, being late and dying of heat stroke) at first but then we stepped away from it and realized that this is what we had right now. We started to look at all the things we could do with it. Our daily commutes became our chance to pray, catch up with each other, dream, people watch, minster to the beggars who rode beside us at times and journal. It became one of our favorite times of the day. And we made the best of it and not entirely cynically we would say on particularly long trips or crazy crossings of a big street on foot I LOVE TRAFFIC.
Contentment is something I struggle with. Being content with waiting on God or wait on public transport or simply being happy with I have at that given moment. Its so easy to give into complaining or whining about what I wish could happen faster or what I wish I had or what I wish could be different. There are so many things I want and so few things that I don’t have that I actually I need. You go to any book store and you will find oodles of books about finding peace and contentment. And there are a great variety of such books in the religion section alone from prosperity gospel to physics to magic formulas, but no ONE HAS AN ANSWER….
God provides in his own time, his own season and his own way or so we are taught in church. But how do we learn to wait, to trust. Oswald Chambers says the most important word Christ ever spoke to his disciples was abandon.
What does abandon truly look like? Can we truly be joyful and grateful for what we have and live in the moment? Can we drop everything and truly live with abandon? Reckless abandon??
So different from what our culture tells us…and in the end I think thats the key. Its recklass abandon of what wer are told to worry about, told we should want and need for instead embracing what we have and what God has for us.
I am not sure what that looks like exactly but I am praying God coninutes to show me.
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| for such a time as this |
[04 May 2009|06:07pm] |
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Originally published at Perches in the Soul. You can comment here or there. My roommate Jessica calls me a REBEL. She says I am not disrepsectful but I have issues with authority and I tend to see people (with some exceptions particularly as a young third year) as people rather they are in a place of power or the jaintor…. I think this is partly my personality…I hate beuaracracy for the sake of beuaracracy and I hate big egos and frankly my own life experience has taught me that people rarely turn out the way the world thinks they should.
Today I was minding my own business in the NICU workroom helping the new residents get used to the crazy NICU computers and mucho important facutly member walks in the room. He talks to the fellow and introduces himself as our incoming attending starting Thursday to the residents. Then he notices me with my feet hung over a chair, list in my hand, hair falling down, scrubs stained with strawberry juice from lunch.
“You’re our AI, wonderful, I read your paper I have been meaning to talk to you. So have you decided on peds?”
I sit there with my mouth hanging open confused. I had had one interaction with this man, he complimented me on my surgery essay (read here) which was published in the school’s journal. I remember only because our student body president took me aside and asked me if I knew who I had just spoken to…I shook my head. He mumbled a important title that was lost on me beyond that he was mucho important. That was 6 months ago.
YES! I have commited to Peds! I said. What paper are you referring to?? My surgery essay?
No, no it was an abstract. About physicians with limitations.
I nearly fell out of my chair. The abstract is not a secret but it sort of is. The only faculty member who knew about my submission to the AAMC (American Assoc of Medical Colleges (a large group of mucho important people who are the gatekeepers to med school nation wide) Annual Conference) was the guy who teaches our professionalism class.
“Oh yeah…I wrote that.” I stuttered. “I don’t know whether it will be accepted or not till July.” He responds, “It has come to my attention we have turned down at least one highly qualified candidate who is now going to Hopkins because of their disability. I am interviewing candidates for a new Dean of Admissions (the old one is retiring), the one we select will be announced next week. I am only interested in choosing someone who is absolutely committed to rewriting our Technical standards.” (Technical standards are the PHYSICAL (non-academic) requirements for medical school, they are one of the BIGGEST BARRIERS to disabled doctors. My school’s TS are atrocious…so bad that I shouldn’t have been admitted under them however I had a faculty member write me a letter of recommendation and I was one of the top five in my pre-med class at the same institution…its hard to turn down one of your own)
audible gasp from Amy.
“I want you as a consultant for the project, along with J (alum who had a spinal cord injury his 3rd year at my school), T (current upper level int med resident). You’re the experts.”
“I would love to…”
“Excellent, we will chat more, what are your thoughts about Dr. X (mucho important person directly involved with med school stuff)’s feelings on this, I am not sure he is on board…?”
“Um…(dude he just asked me my opinion on the freaking Dr. X who in part controls my future….but who I have secretly believed he is not a believer forever now) Dr. X has always supproted me…beyond that I don’t know.”
“yeah I am not so sure about Dr. X either.”
(holy crap what have I gotten myself into)
“I am very excited to have you on the NICU team and for your future in peds and I am glad to have you on broad for this project, See you on Thurs.”
So I got home and looked the guy’s title up…he is only the Sr. Dean of the freaking school. (4thish from the top of the little medical center prymaid).
I am thrilled but also a little freaked out….this guy knew nearly secret information about me and had insight into my thoughts on a VERY controversial subject The rebel in me is a little annoyed, the activist in me is singing.
also have to become the best darn AI by Thursday in NICU history….no pressure….
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| Beauty and Pain |
[26 Apr 2009|09:05pm] |
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Originally published at Perches in the Soul. You can comment here or there. I am in love with the NICU. The tiny, fragile patients with uncertain futures who in their vulernability are beautiful. In their beauty though there is pain, these tiny humans know pain of their larger inpatients but they have few ways to articulate it. There is pain for the ones we can’t save and for the ones we can but whose futures seem less than optimal (rather it be medical, social, etc). But there is such unparaelled joy in the ones we can save, the ones who grow and develop as they should.
This weekend my spinster Aunt got married at 47 to a widower with 4 kids. It was a beauitful ceremony filled with the excitment and joy surrounding any wedding. But there was saddness too, sadness for a mother who died before seeing her children grow up.
I hurt my knee at the wedding. I didn’t do anything but I woke Sunday morning with a hot, swollen knee that felt like I had torn something to bits. Last week I dislocated my elbow… I’m a bit of a rheumatological mess right now. I’m in love with my work, the babies and peds in general but i am in constant pain. Its been a long winter. I do believe that the hip’s death spiral is putting undue pressure on everything else. I have resigned myself to surgery in March of 2010. I am dreading it, the idea of going back to the place I lf behind a decade ago is scary. but I am grateful for it. That there is a light at the end of the tunnel! Its a beautiful thing.
and the truth is I want to get on with my life, with doctoring babies and dancing at weddings and loving it. thats a beautiful reason to be willing to take the risk of surgery.
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| Important Things I learned in Medical School |
[19 Apr 2009|07:47pm] |
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Originally published at Perches in the Soul. You can comment here or there. We need to liberate the Iraqis in the duodenum
Its all comes back to bacon and a kid named Tony.
Cardiology is better with an adult beverage in your hand.
All the colorful language I use I learned from Dr. Chatterjee.
GI Joel is the coolest block director ever.
If you eat Polar Bear Liver you will kill your own liver
Reindeer do not have gallbladders
Do not eat your hair. It will cause a massive obstruction in your GI tract over time.
Vulvanman and godzilla are friends.
That’s the straight poop. (Its all true)
Don’t play with guns.
Don’t play with bricks.
Don’t play with hot water.
Don’t play with knives.
Don’t play with nails.
Don’t play with toothbrushes.
Don’t eat Mr. Potato Head parts.
Don’t play with cars.
Don’t play with lawn mowers. Actually lawn mowers should just be burned.
One nut is better than no nuts.
Never underestimate the high frequency of less than one in a million.
Med students are man’s simplest tool the wedge. Its always our fault.
Anything smaller than a a baseball can be stuffed into nearly any body orifice.
Delivering babies is not a sterile procedure.
The uterus might be the most amazing organ of all time.
My parents’ home is NOT a substance abuse facility.
Its easier to apply for disability with many diseases than it is to find a job with insurance that will cover said disease.
One should never see cats in the ICU but one may occasionally actually be right about being paranoid that the FBI is tracking you.
Electroconvulsive therapy is shockingly anti-climatic
In the end it all comes down to fluid.
how you die matters.
bagels taste better at 2AM.
I am on pg 417 of Smith’s book.
Informed consent is a relative term.
Cancer sucks.
It looks like a rt bundle branch block…it is a rt bundle branch block.
When it doubt it congestive heart failure. When its not CHF, its probably HIV and if its not HIV its probably TB.
Messed up kids have super messed up parents.
Everyone is addicted to something…the question is how quickly will it kill you.
You can actually exnucleate your eye with your own hands.
Never underestimate what can happen with anyone with eyeballs in a mile radius of small, sharp,pointy objects.
Cameras in the workplace just scare the crap out of everyone.
All bleeding stops.
Adults need something to do in the hospital other than stare at the walls and ponder their fate.
SKIP BO is an excellent example of a better activity.
Losing the ability to walk. Difficult. Losing one’s ability to feed one self. Difficult. Losing one’s ability to commuinicate Difficult. Losing the ability to think, relate to the world. pricelessly horrible.
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| the state of the elf. |
[13 Apr 2009|05:47pm] |
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Originally published at Perches in the Soul. You can comment here or there. I spent a good portion of my afternoon playing
 Skip BO yep. I played cards in the middle of the neurology nusrsing station for two hours. The patient (Ms Smith) has severe MS that effects her/his mental capabilities. Ms Smith also is stubborn and nearly impossible to place in a nursing facility because he/she is so difficult!! Ms Smith has been in the hopsital three times during my neuro month. Ms Smith is more with it than we all her give credit for, mostly she is ticked at her lot in life. She remembered me from two weeks ago, remembered I sometimes am on wheels. On her little bio that her/his family filled out they said she/he likes SKIP BO. Well I happen to know where they keep Skip BO in the child life room so I took a little unauthroized field trip and brought it back to the adult side. And she taught me how to play. She was so grateful and did not require any sedative and took her meds. The Chairman of the neuro dept is on service this week and saw what I was doing and was impressed. I blushed, told I her I wanted to do peds and said thanks.
What I should have said was this was as much thearpy for me as it was for my patient. Skip BO is about order, numbers, you make orderly piles of 1 through 12. Everything has a place, a match, an anaswer. Skip BO is the oppositte of my life. I can control Skip BO so can my patient. Maybe thats why she loves Skip BO because she can understand it and control it . How do you understand your immune system eating your brain, your memories, your emotions, your relationships? How do you understand not being able to be cared for at your own home, not being able to feed yourself at times and not signging your own consent forms…. How do you accept not having control of your own body, your own life, your own fate? You don’t ever really accept that. You don’t ever really get used to the idea or understand it.
In reality so much of mine own fears are caught up in control issues. I like playing doctor because I am on top, I am in control I can make decisions. I dislike being the patient for the opp of all of that. I dislike the match process because in the end I trust my fate to a computer system and God. Spiritually I struggle to really trust God, to surrender control.My problems are small in comparison to my patient but I think maybe I understand her just a little.
So I play Skip BO with my patient and we both feel better and we both feel less likely to bite the next person who annoys us or reminds us what we have looming over us.
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| The Four Moods |
[10 Apr 2009|10:50pm] |
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Originally published at Perches in the Soul. You can comment here or there.
Doctors have four moods curious, annoyed/tired, sad and confident/excited. We are curious as we gather information about new patients or problems. Sometimes we are sad because there is nothing we can do for our patients so we are sad with them. Sometimes we are exhausted by our patients or annoyed because they just don’t understand that either we can’t help them because they won’t help themselves or we simply not the right sort of doc for the job. Lastly there is the confident excited mood. This is how we feel when a patient with a problem comes to us and we either figure IT out or better yet we can help them, make them better.
I traveled 14 hours round trip to play patient today. I squirmed there on the stool waiting with mother and sister for the verdict. As I habitually have since childhood I had dressed nice today, combed my hair back. I sat there and tried to read neurology and supress my curiousity of the open doors with other waiting patients and keep myself from fidgeting from anticpation and the constant gnawing of my left hip. The fellow came in and took the history. As I recited the truth about the hip pain the little student doctor in my head knew exactly what was a red flag hearlding surgery. I interviewed myself I gave a concise chief complaint, history of present illness, what makes it better vs. worse, what I had tried, my past medical history, etc. He leveled with me on the x-rays. I had already seem them I knew and before I knew I found myself explaining with him to my Mom how bad it was. The language flowing off my tounge: narrowed joint space, osteophytes….
The attending came in and he was completely different than the first time I had met him 4-5 yrs ago in which he spent four mins with me in haste made a comment about getting a baseline. This time he looked right at me with that look. The fourth mood the one where a doctor sees a sick person and knows Ahha this is somoene I can make well. For some reason this unnerved me completley and made me feel disoriented . He shook hands all around as I scrambled up from the stool to the exam table giving him a sit. He looked at me and said how is life. It was a loaded question. I talked about med school and pediatrics and we tangentially talked about the step 2 board study book I was clinging to as if somehow would keep me afloat, then I cut to the chase and recited the history with its red flags.
He sat down and said it sounds like if you lived closer and I seen you more often we would have already done this. We talked about doing a regular hip vs. resurfacing (not a good option with my bone consistency (jello)). And before I knew it we were there and I was a bit tachycardic because I was 24 and looking at a hip replacement and even though I had driven 7 hours for this I somehow found myself fumbling and unprepared. A million things were happening all at once… I started having surgery rotation flash backs and flash backs from childhood and had a million questions and didn’t know how to process it all. It just tumbled out, if I have such low bone consistency doesn’t that put me at risk for shorter lifespan of a hip prosthesis. He gave me THE LOOK and said his goal was 20-30 yrs and as he was sure I would tell my patients think of this as a postive, some that is going to change your life for the better not ruin it. He took out a pin and gave me his home phone number to call at my convience when he could answer all of my million questions with out the constrains of clinic.
I was shocked, he was breaking one of the cardinal rules of medicine. Maybe it was because I was baby doctor (a student doctor and a doctor who doctors babies J )or maybe because he saw the look of skepticism in my eyes or maybe he does this for everyone (doubtful) or mabye it all went back to the fourth mood. It was his way of telling me what to do but in a professional way that didn’t’ tell me what to do . He offered me a steriod shot, told me that he didn’t trust anyone but himself in doing it and that I should try it especially if I really wanted to wait 10 months till after the match. He said he could do it NOW and I thought what the heck at this point I am carrying around a half dead hip.
So I am whisked into the treatment room, left alone and strip my pants off and lay on the fluro table with a gown over my body. I stare at the celliling for a while and focus on breathing. The tech and the doctor come in and what was a 35 min procedure at Wake was done in 45 seconds.I told him that the doc at Wake had said I had strange anatomy and he proceeded to tell me to tell my attending there that he was wrong my anatomy was not that odd at all, he made several jokes at his expense until he noticed me watching his every move intnetly and told me to look away because it would make me nervous. I explained I was sick and twisted and like to see what was coming at me. He cleaned the area and completely left out the lidocaine and the contrast and thrusted a large bore syringe into my joint space. I sat up and he shook my hand again told me I could come back in three mons for another shot and that I should call him.
And then I am driving back the insane drive through mountains and ponder that fourth mood is about trust buliding. Its what allows our patients to trust us with scapels and needles and poisions. It works better when our patients don’t know what coming and when they don’t really know what they are signing up for. But you see once you know the technique, the tatic, once you know that behind the curtain is not a wizard but a man, its hard to believe. Its hard to say yes give me respiratory depressing poisions, take out my femoral head, replace with some forgien body that you say is going to positively change my life that I say is an infection, a femur fracture and a huge risk to my walking life in the making.
There is no choice really, the surgery means Africa and hiking and roudns without pain and internship year and walking at graduation without cringing.
But I am still skeptical.
Igoranace is bliss. Knowledge makes simple decisions fraut with reality.
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[31 Mar 2009|03:20pm] |
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Originally published at Perches in the Soul. You can comment here or there. Good News: I had a really great time hanging out with kids with neurological diseases at camp.
Bad News: I am sucking at neurology wards or at least have some serious lack of interest
Good News: I have 20 days left of big people inpatients in my life…I will be done forever.
Bad News: There are on neuro
Good News: I have a appt in Baltimore to see the surgeon.
Bad News: My Hip has the consistency of pudding per bone density scan today…it was nearly off the chart. I think if you squeezed it hard enough it would break. No surgeon is going to touch me with a 10 ft pole.
Good News: I have the schedule of amazingness for next year: Romania, Africa, a tour de Pediatrics, Memphis (Urban pediatrics/peds HIV), Peds Ortho in Delaware!!!!
Bad News: I need a 6 month lease which is hard to find roommates for!!!
Good News: ITS TUESDAY and that means Tuesday night fellowship group!!!
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| crucible |
[25 Mar 2009|09:47pm] |
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Originally published at Perches in the Soul. You can comment here or there.
And sometimes things break down.
My computer died this week had to get its hard drive wiped and I had to reinstall all kinds of programs and stuff, thankfully they saved my pictures and my documents and music.
I am jealous of my computer. I wish I could wipe away the clutter in my life, the voices of others, the opinions, the perceptions, the layers, the myths, the mistakes and the perfectionism. I wish I could just selectively choose and have it wiped away. I feel like I am a fish bowl and every one in my life is screaming at me with advice and concern and I don’t know which one of the big distorted faces reflected in my glass prison is not going to eat me.
Dad is yelling at me to stay at Wake where its safe and to be wary of the outside world of medicine where there are no ramps, no electronic medical records and evil administrators who eat fish…I mean gimps for dinner.
My advisors are yelling at me to go for it, the sky is the limit, I can go ANYWHERE, aim high, represent us well they say.
My Dean of Academic Affairs is vocally telling anyone who will listen they want me to stay here (possibly forever…and ever and ever Amen. )
My friends (and my classmates and their significant others) are yelling at me to stop worrying while they themselves daily seem to be begging for anxiolytics, time off and sleep meds.
Two long term adults in my life are telling me to be the doctor that disabled people believe they can’t be.
Disabled people in my life are yelling at me to change things for them.
My doctors are telling me they are willing to do what ever I want to do…just name it. But in their compassionate, beautifully executed, careful, tactful manner they are telling me exactly what I SHOULD do.
My body says its tired and sore and its counting the cost and its sort of like the bailout of the US economy…its getting bigger.
My mind is bogged down by all the voices and the doubt and the exhaustion.
My heart is longing to be free of the fish bowl on so many levels.
My spirit is crying out not for advice or even wisdom but for peace, for stillness, for simplicity.
If only I could just get my hard drive wiped.
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| less than one in a million |
[18 Mar 2009|08:13am] |
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Originally published at Perches in the Soul. You can comment here or there. Maybe the other reason the perseverance comment is getting to me is I feel unworthy of it on of top finding it non-productive. I am trying to make big, big, big health decisions right now that will alter my life and my career. I am no longer a minor so its me myself and I making these big decisions.
The truth is I have to be realistic. I’m like a football player with a torn ACL that refuses to quit playing football. I will be an intern in T minus 16 months inless I want to be in debt 50,000 for nothing. I want it. I do. Even though I know what it will cost me in cartilage. I want to be a doctor. So hip surgery is my best shot of internship not becoming a death march for the rest of my joints and my sanity.
When I was a kid I am sure there was ambiguity about what was right in terms of surgery or no surgery. In fact I even remember the conversations especially around the first big one. But I was a kid and I believed in Santa Claus, the Easter Bunny and the Tooth Fairy and medicine. Oh how I believed in medicine. Now I have become a priest of medicine of sorts and I realize that the magical, all powerful healing wizard behind the curtain is actually an army of humans who make mistakes, have bad days and never eat or sleep but still cut on people’s babies.
I also grew up thinking less than one in a million diseases are way more common than you think because I was less than one in a million and so were my friends. I could name 20 people who were less than one in a million. I also was a military dependent which means I got to go see the big shot orthos for free (and by free I mean thank you US Tax payers!). Sure my pediatrician and all the residents had never heard of Kniest or operated on any one with it but my orthos knew about it and had experience with it. I lived in a happy world where I had faith in people who were bigger, smarter and more magical than me.
Now I am an adult. An adult in medicine no less. Who knows that while less than one in a million is common in my life, in adult medicine you are as prevalent as aliens from Pluto who are protesting its deprivation of planet hood. Adult Orthos look at me with fear in their eyes. FEAR. from orthopods who have egos the sizes of small european countries. They look at my flims and audibly gasp (really I watched this…I will dig of the post from 4 yrs ago and link it later) and say bad words which I shall not type.
I do somewhat like the dude in Baltimore that my peds ortho sent me to because he treated me mostly like a human and not as an alien. But he is famous and in demand because he pioneered hip resurfacing in the US. He doesn’t answer my phone calls or e-mails. This is the procedure I need. He agrees I need it. One small detail he left out when we dicussed this 4 yrs ago (we were dicussing as a future proceddure in the next 3-5 years), he has never, NO ONE has ever does this procedure in a person with Kniest or SED or any related disease. I spent weeks looking everywhere, talking to everyone I know. The truth is out. Cong. hip dysplasia yes. Chondroplasia (beyond early OA) NO. Its a new procedure (FDA approved in 2006, in clinical trials since 2000, been in England for a while). And the truth I am tall, so tall. A LP would be at higher risk for this. Thats why I am the lucky millionith customer.
Um, wtf? How do people make these decisions? I mean I want the procedure really i do. It buys 10 years of Romania or Kenya or whatever. I want it. But I am also terrified about it. Because I don’t believe in the magic. I know the raw, carefully calculated and learned skills of medicine. I know that there are no sure things and God knows that I know that less than one in a million odds happens. And he also knows that I am good at doubt.
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| the award that gets old |
[13 Mar 2009|08:46pm] |
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Originally published at Perches in the Soul. You can comment here or there.
I remember being in 4th grade s/p my first winter in plaster. I was the Blue Caterpillar in Alice in Wonderland. We made my wheelchair into a mushroom out of tie-dye fabric. By the time the play rolled around I have been rehabbing for a while and was walking. So I took the fabric and put it around my shoulders as wings and was a butterfly for curtain call like in the Disney movie. Every one in the play got an award mine was Most Dedicated or something along those lines. The director talked about facing hardships or other such stuff when she was introducing me. It was ok but I remember being jealous of the all the other kids who all got things theater related awards like most in character or improv diva, most creative or even most improved actress.
On the last day of 7th grade we had an award ceremony for our team. I was on the Tiger team. All the teams were some kind of great cat because our school mascot was a wildcat. Several weeks earlier I had been on my way to an honor roll ice cream party behind the school. I started to go down three or four steps and the railing broke. I fractured my lf hip (and its still haunting me all these years later). I was put in a hip spika cast which is basically a medieval torture device with an abundance of cotton padding. This was after walking on the hip for a week because no one including my Dad could find the hairline fracture on x-ray….I also rewrote my part of Templeton in Charlotte’s Web which opened the day after the accident. My Mom took me on the last day of school to the ceremony. Every tiger got an award, a superlative of sorts some were funny, some were how smart you were or what color you always wore or related to your favorite subject or sports team. Mine was…The most courageous Tiger. I remember feeling disappointed and a little embarrassed when they called my name for this award. I was a good student and very active in everything and this was the best thing they could say about me?!?!
I remember being an 11th grader and going to church camp. I loved church camp. We would stay in college dorms with other kids from all over the US, swim, play pranks, do skits and enjoy watching/participating in the teenage drama and merriment that is 300 teens living together in community. Every year people would audition to sing in worship. I took chorus in high school and I sang solos sometimes at my church. I decided to try out on a whim. I made it. I somehow beat out like 20 other people for a solo I was so nervous, I knew I wasn’t the world’s best singer I just liked to sing here and there for fun. The background music was hard to hear in the giant auditorium. I lost my place a bit although I managed to save it by adding a repeat at the end. I got a standing ovation. Initially I was kind of excited thinking maybe I did a better job than I thought. After the service was over, people came up to me in tears about how beautiful it was me getting up there and all, walking up there without my wheelchair. One of the other churches actually wrote me a letter about it saying how much my Christ like example meant to them overcoming my disability and all. I left camp feeling annoyed and slightly used. I felt like I had been conned into being the camp’s resident POLLYANNA.
Two days ago I went to my post box and pulled out one of the tell-tell white envelopes that mean GRADES. Inside was my internal medicine grades and the all important comments (which will be summarized in my Dean’s letter for residency). And there in 12 point Arial font was the word perseverance as my leading strength. I just stared down with a sense of sincere disappointment. I had worked so hard on my differential diagnosis, my physical exam, my presentations, my medical knowledge. All the things you are supposed to learn on your int med rotation. Heck I may have bought myself hip surgery with this rotation. And all I got was another pat on the head for being the resident gimp. No one cares if there doctor perseveres, no residency program really cares at least not compared to my ability to take care of patients.. The last thing I needed was one more teacher/attending/authority figure to tell me I am dedicated, motivated and persevere almost to a fault. What I need is someone to tell me what my strengths as a clinician are, as a physician. Disappointing…
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| Flaming red arrows |
[11 Mar 2009|10:25pm] |
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Originally published at Perches in the Soul. You can comment here or there. 1. I am committing questionable academic suicide to go to do an away elective in Memphis, TN with a series of free clinics that seek to train the next generation of medical missionaries for the plains of Siberia and Africa in the ghettos of urban America. I will be focusing on peds HIV. This is happening because of a printer network dying in the library six days ago (while I was printing the final form for a DUKE elective…which i am now giving up for this), a little old lady who was in front me in the grocery store line, some PEEPS (the yellow chick shaped marshmallows), a very annoying endocrinologist, contracpetion for adolescents and strange recollections. All of which together have to be part of some divine plan…either that or I have finally lost it…Sometime I will write down the whole insane story.
2. I had a revelation today or maybe more of a personal resolution. I am sick of my lf hip. I am moving from the precontemplation stage to the contemplation stage of resurfacing surgery. Down side I can’t drive for four weeks afterwards (meaning planning it is going to be slightly less complicated than fixing the economy), Up side residency would not be the a death march for my left hip (somewhat literally). I can’t get to the dude in Baltimore and do all the things I need to do in my life right now so I looked up someone here. He has excellent training include some peds ortho and hip arthoplasty for young adults. I e-mailed my Rheum for a referral. heck…I have lost it….I am actually going to an ortho out of my own free will with surgery at least on the table.
3. I passed int medicine but the word perseverance and some other serious disabled tiny Tim crap somehow ended up in my freaking summary statement…yet its no where to be found in ANY of my evaluations…i wonder if a certain eavesdropping incidence involving my rheum felow (who is completely innocent because he apologized profusely for it), my lf hip, gen med and a nameless attending has any thing to do with that….there will be an angsty blog entry about this at some point.
For now I have to go eat dinner…its nearly midngiht. I am so exhausted.
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| Culture Shock or why I am Homeless |
[02 Mar 2009|07:59pm] |
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Originally published at Perches in the Soul. You can comment here or there. When I was 3.5 we moved to NAS (naval aviation Station) Pensacola. I went to preschool there at a local elementary school. It was how early intervention worked back then, I got PT, OT and speech by going to school. It was the 80s. Disabled people in headstart all went together. There was another class for the average kids. I was one of the only kids in the special kid class with a normal IQ (me, a deaf kid and a blind kid). I was too little to know how unfair it was. I loved school, the bus, the class. I loved my friends and I loved my teachers. I still have fond memories of the room and eating ants on a log and listening to stories and how the discipline system worked and our Halloween party. I have a picture of my best friend in a box under my bed at my parents’ home. It is in a rainbow colored heart shaped picture frame. She is wearing a purple sweatsuit and has a big smile on her face. She had brown hair and blue eyes. I remember I wished I had blue eyes like her. Now when I look at the picture I know she has Downs’ Syndrome. Her blue eyes are classic almond shape with epicantal folds… But back then she was just my friend. Back then I didn’t know that there were two classes. Back then I didn’t know that there were two worlds.
In Kindergarten I was put into an average class. I was 4 and tiny. Other than telling my teacher off daily for trying to make me hold my pencil a way that was utterly impossible for my already arthritic fingers I loved school as much as I did the first time. I had lots of friends. We still get Christmas cards from my best friend Joey’s Mom. I struggled a little with phonics but once we all figured out that kids who only hear 50% of the stuff their peers can don’t really get phonics I jumped 3 grade levels in a single year in reading. I made the transition between the worlds without much drama. I didn’t even know what was happening. We moved to Maryland, so I had no idea that all my friends from pre-school were in a different class.
There is a story that I have no memory of that apparently on the first day of kindergarten some kid asked me why I walked funny and I told him: God made me that way and if he didn’t like it he didn’t have to be my friend and stormed off dragging Joey and some other kid behind me. Apparently the teacher cried when she told my Mom about it. I don’t remember it.
Now I tell people I have a procollagen 2 mutation on chromesome 12 that leads to osteoarthrits, hearing loss and myopia and I am going to be doctor if they don’t like it they can buzz off. I never looked back after making that transition. I did well in school after the phonics stuff resolved, did all the honors track stuff in secondary school. I was the only kid in any of my high schools who participated in programs on both sides of the EC (Exceptional Children) office: special ed and gifted ed. I had very few disabled friends growing up except for Aaron who lived far away in NYC and the occasional hospital roommate. I grew up in the average world.
When the internet happened in middle school which led to the Kniest group I started to actually realize that I was not alone. I became very uspet and agnry at the injustice I saw in the lives of other disabled folk. This led to Romania and intense study of disability rights laws and movements. This led to after three years of struggling with saying it…the realization somewhere around the time I was demanding UVA widen the doors of their anatomy lab that I was an activist.
I wrote my personal statement for medical school about how listening to the stories of other disabled people in the waiting room of AI Dupont Children’s Hospital and in the institutions of Eastern Europe called me into medicine and providing high quality health care and justice for my fellow disabled folk. Every school I interviewed at it bought into it. Heck I bought into it.
But you see I am a fraud. I may look disabled. I may walk disabled. I may talk about disabilty. I may claim to understand. But its a lie.
I am at best a double agent. You see I don’t fit in with my pre-school class anymore. I don’t even fit in with the disabled kids with average IQs anymore. Recently I made a new friend. We are the same age, we are both part time chair, part time walkers. Both born with our disabilities. Both live in the same city. Same race, same religion. Completely different lives. She looks at me with awe…I drive a car, I live on my own, I am in medical school, I went away to college, I travel, I cook, I date, etc, etc She lives at home, she volunteers at the hospital I am learning medicine in, she doesn’t drive and is living off her SSI disability check. Tonight I met her Mom. I set her in living room and felt flushed. Her Mom talked about me like I was a superhero. She looked at me like she wanted to use the i-word (inspirational)….
and I left feeling homeless and a little guilty. Somewhere along the way of middle school dances, school plays and AP exams I left my people behind. I am not sure when I learned about the two classes…but by the time I did I knew where I belonged… I claim now as doctor to get them. Heck my medical school has me give a lecture to the first years about how I get them. Everyone seems to think I get them. But the secret is I don’t get them. I find it hard to relate to them. I can understand their medical experiences maybe but I find it hard to understand their lives. And tonight is just example of a wider reality. If you look at the statistics the average young woman with a birth defect or congenital anomaly is not me, its my friend.
I feel like I have become a interpreter for a tribal language that very few people know. I speak gimpspeak and normalspeak. In Eastern Europe, I have heard westerners lament that they feel they have tainted their translators or friends…they have given them glimpses of another culture and changed them. I have been changed. I live between two worlds not fitting into or being accepted in either entirely.
So here I am 21 years after pre-school wishing in some ways that I could go back to when I didn’t know there were two classes. Where I thought that my friend with the brown hair and the big blue eyes was beautiful and I loved her with a undying childhood loyalty. She was not a diagnosis, not a statistic not someone who I had special insight into for the betterment of society at large..and to her I was not awe inspiring for my average intelligence or inspirational for my limp or my hearing loss… to us the other was just simply a friend.
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| I like the funny looking ones best. |
[26 Feb 2009|01:59pm] |
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Originally published at Perches in the Soul. You can comment here or there. On the way to skiing I visited the one other Virginian with Kniest. He is 10. I haven’t seen him in 6 years. He is one of the coolest kids I know. He has a zoo in his room with a snake, frogs, several lizards and a chameleon. I held them all to his delight (adult females who have affection for reptiles and amphibians are hard to find). He is also an artist and has beautiful, framed colored pencil drawings all over his house. He is brilliant, makes straight As, has a great sense of humor and a fun personality. He also happens to be the size of the average 4 yo and we have the same face and eyes and hands.
And for the first time in a while I thought about what it would be like to have a child, my child with Kniest. I remember being a teenager and thinking when I am older I will know what I want. I will know rather I am ok with 50/50 odds and if I could live with the gulit of knowing that I could have prevented my child’s disability by adopting. The truth of the matter is I am 24 and probaly more confused than I was at 14.
Its such a multifaceted decision that is so caught up in my own fears and insecurities and identity that I find myself running in circles. On the one hand, who doesn’t imagine having a child that looks like you and that has similar life experiences to you? And besides I am always talking about how I would never have been the strong woman that I am today if I have been born average. And when I see children like my friend who I visited who are amazing, gifted and adorable I can’t help but dream about having a child like that. Lots of women with Kniest have babies..many have one average and one with Kniest. And ultimately God would make the decision not me.
But on the other hand, I have this image of me sitting in a surgical waiting room somewhere wringing my hands and facing agonizing gulit knowing EXACTLY what my kid is going through and knowing that I could have prevented it. Even knowing God is in control would not entirely assuage my gulit. I advocate for adoption naturally….no matter what I want to adopt anyway…but I think in the deep places in my heart I always imagined being pregnant with my own at least once. A small side note if I did decide to carry my own child…there will be many in my profession who think this decision down right irresponsible. I don’t really care what they think…but I am sure it will make for an interesting 9 months…
ultimately I wouldn’t’ have a kid naturally (I will adopt with or without the guy ) in less I found the right guy anyway and he would of course have some say…so I suppose this endless monologue is futile. …I just find it interesting that when I thought the decision would get easier and more well defined….its has gotten so much more complicated and ambigious.
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