Homecoming

Coming home has been overrated in my mind at late. I am back in America which is supposed to be…home and yet I feel out of place. Last year I didn’t go to any of the homecoming festivities. This year since it was the day after an exam, I decided why not? So I went to the tailgate and before I knew it someone was twirling me around in the green machine (I know, I know…it supposed to be my personal space…but remember I grew up in the South and we hug and touch affectionately all the time) and there was an old friend Jimmy. He was full of news of Duke Law and his upcoming marriage. While we chatted away two of my medical school classmates came up. Jimmy is quite the wheelchair stunt devil and I teased him that he had been missing the chair. I was already standing up and he sheepihsly asked, “May I?” I told him he could, my medical school friends were like there is a kid in your wheelchair. He is going to fall and hurt himself. I assured them that he is fine. Jimmy asks, “They don’t play with the wheelchair??” “No, ” I whisper. ”

There is a pregnant pause… and then we changed the subject.

I spent time catching up with several old friends and received lots of hugs and shared the green machine some more. And for the first time in a little while I felt truly secure and safe in community with those around me. Med School is full of expectations and insecurities and a constant avalanche of busy-ness. For a little I came home not to a place or a school or a time of my life but rather to groups of people who love me for who I am and will tell me like it is. And who are completely comfortable with all of it.

its nice to know that such homes exist as I travel away to other more professional lands…like medical school.

…in case you were wondering

Walk with me for a moment….ever wanted a peak inside a Romanian institution? I just found this. I had heard about the MDRI report! I know someone who is a missionary at this institution. It reminds me of Crinul Alb where Aurel lives. Although Bralia is slightly worse.

http://abcnews.go.com/Video/playerIndex?id=1944838

this what I saw day in and day out all three summers. Its what haunts and drives me to finish school and go back and work for change.

unlikely convert

I should be memorizing chemo drug side effects because I can’t seem to make them stick in my head, they seem random and unrelated to their mechanisms…Instead, I am blogging because well at least I am contributing to the world in my procrastination.

The other night my roommate K ( who I have known all through college) came into my room for a late night chat. K is Chinese American and she has big issues with her cultural competency class in her nursing program and she should they are making all kinds of sweeping statements that just aren’t true. K protested a particular comment about Chinese Americans and the professor got annoyed with her.

Then out of no where, K starts talking about J, a mutual friend who is a big fan of John Calvin. And by a big fan I mean she might have his babies…J is that type of Calvinist who believes that anyone who is a Christian and is not a Calvinist might not know Jesus… She drives K and me nuts at times because we are the kind of Christians who don’t particularly care about free will vs. predestination…we see it as a futile debate that we will never be fully understood till the next life. Anyways, K tells me the other night she and J were at a bible study and somehow disabilities were brought up, particularly a child with Downs’ Syndrome. J told K she believes that, “…all disabilities are a result of the FALL…you know cursed by sins of the world.” K, was mad…she told J, “What if Downs’ Syndrome isn’t a disease but just a difference? Who is to say they aren’t content with who they are, closer to God or simply having a different human experience? Who is to say that God didn’t design that experience? What it is us who just don’t get it because of the Fall?”

I gasped. K has been my friend for years, YES! She knows about wheelchair ramps, handicapped parking, disclosing my disability in medical school interviews, turning my hearing aides off in the dorm, inaccessible stores in W-S, wheelies, my intense fear of ice, and how to put the Green Machine together. But I can never remember talking to her about my theology of disability. She was a bio major, I know that the term liberation theology is foreign to her. I know she has never read an essay or book about disability as a natural human experience. Yet, she is pretty darn close to all of that. For an average person, especially one who has grown up in conservative evangelical circles her thinking is pretty radical. And she doesn’t even know it.

For a moment, I am panicky. On the one hand, I feel comforted by her loyalty. In another way, I am afraid of what I have done. I have changed someone perception of God and their beliefs enough that they would preach a radical series of ideas that I am still myself working through. I feel a weight of a responsibility for her, for what she says. I want to dot all my I’s and cross all my T’s and cross reference and footnote my beliefs. Justify it all to stand up to J and the rest of theologians of the world’s centuries of debate and dialogue.

Then I realized that nothing I said or did could change the truth. God was not limited by my rambling…and I hugged K and went to bed.

a bit barbaric

Last year I was in awe of the beauty and harmony of the body and all its processes. I gained a great respect for the body. A silent understanding of the risks that coming from treading within its glistening corners. A knowledge that nothing I ever could create could ever work this well.  I felt so honored to be allowed to explore the body’s crevices, to marvel at its meticullously efficient dances that keep it (us) alive.

Those days are gone…2nd yr of medical school is traditionally where medical students  learn all the infinite things that can and will go wrong.  And then we learn how to fix them.

Its the fixing that I was a bit naive about.

…when you get right down to it medicine is a little bit barbaric (it should be noted I am in the mist of hem/onc right now).  We torture people. I mean we have good reasons to torture people, if we do it right we might save their lives. But still when you get right down to it we torture them.

We ask our patients to tell their deepest secrets, their secret fears, their most embarrassing thoughts and experiences. We strip them, examine them inside and out. Then we give  poisons that might control  diseases but also might slowly or not so slowly kill hearts, livers, kidneys. etc. Prevent them from ever having children or experiencing pleasurable sex. We destroy immune systems and leave our patients vulernable to everything from yeast to colds. We give them rashes, sores in their mouth, in their gut, scars and bruises. (its like the book of Job) We poke large needles into…well everything.  We cut our patients open, take things, break things, shake things up and  sew it all back together.  And we have the balls to ask them at the end, isn’t that better?

I have joined a strange cult….I mean profession. It controls when I eat, sleep and who I hang out with and we have strange rituals which we perform on willing individuals that are for the greater good but may or may not be painful, invasive or helpful…

telling the story

…tonight a med school friend asked me my opinion on IVF and genetic screening. This particular friend wants to be a fertility IVF specialist this week so it wasn’t a complete surprise.

This morning I nearly broke down in church not because I was having a spiritual experience but because something in the sermon triggered a wave of memories of Aurel. And I was just overwhelmed with a sense of hopelessness. No one, no one was talking to him, no one was walking with him. I remember my grandfather, asked me when I got home, “What does Aurel do all day when you aren’t there?” And the honest to goodness truth is nothing…he lays in his bed and waits for someone to change or feed him and therefore possibly touch him.  And there are 31,000 kids like Aurel in Romania alone, 31,000 kids who are left to emotionally and physically rot why…because they are different.  The prize for growing up is a one way ticket to an adult psych hospital.

And I just want to drop everything in my life here and buy a ticket to Bucharest and just take care of as many as I can. For a couple of moments I am just sort of paralyzed in day dreams of emptying my savings account, taking the train to JFK and taking the new flight to Bucharest…I could be there by late afternoon tomorrow. Paralyzed with the thought of just walking down the hallway with Aurel or tickling Dani or watching Inout learn how to sing.  The thought that I might be the only person who cares about any of those simple yet in the lives of these children incredibly important things.

All day as I have studied DIC and lymphomas and made chili with my roommate I have been there again in my mind, in those dark shadowy rooms with silent rocking children. I have held them and cried with them.  And then tonight I spend an hour talking about genetic diagnosis and my fear of screening and always choosing the normal child, discarding the others. My friend is Indian and she begins to talk about East vs. West with issues like adoption, embryo donations, stem cells etc.  She then asks me about disability, “What do you know of perceptions of  disability in other cultures?” I tell her a little about what I know about Eastern Europe and she shocks me her response: “What it have been like for you if you hadn’t been born in America?”

And I tell her, I know exactly what it would have been like.   I saw it in a nine year old boy with nearly the same mutation I have…he is blind, deaf, can’t speak, can barely walk and has spent his entire life in a porta-crib. He strips his clothes off so his caregivers will change him again and thus touch him twice.

and she said after a while, “Well I guess that’s some perspective.”

If I can’t be with them and can’t care for them at least I can tell their story. Thats something.