Yesterday, I had a really, really good appointment with my new primary care physician. We now have a plan for going forward, for figuring out what's causing this. My pain is now firmly under control. It spikes every once and a while when I overdo it, but I can usually just take an oxycodone, and it gets back under control. I'm back in classes (actually in a class right now. shhhhhh...don't tell the professor), and feeling like my normal life can actually resume.
On Monday night, I took a hotline shift (for those who might not know, I volunteer for the DC Rape Crisis Center and help staff their 24 hour crisis hotline). Because I've been taking hotline for quite a while now, I actually felt fairly comfortable dealing with the two calls that I got (due to confidentiality reasons, I can't share anything about the actual calls). But I think what felt even better than that was the fact that, for the first time in practically two weeks, I was able to completely forget myself.
I wasn't talking to these two people about my own present pain levels or my medications or my search for doctors or answers. Instead, I was simply spending three hours of my life being ready to listen...and counsel...and encourage...and empower...and just listen. Listen to people who, at that moment in their lives, had no one else in their lives who could just listen to them. So I was that person for them. And it had nothing to do with me. It was all about them. And it felt so amazing. To shed my own problems and concerns for a while and just be there for someone else.
It made me realize how much I don't like it when everything is focused on me.
Because that's not the point of my life. I dedicated my life a long time ago to helping people, to making the lives of people who have been through horrible trauma just a little bit better. And spending the last two weeks just focused on myself has been in such opposition to who I am, and what I care about. It's been so draining. And I really don't like it.
I understand people's urge to ask how I'm doing, to find out if I'm in pain, to ask how they can pray, to see where the doctors are at in finding an answer. I get it. And if I were in their shoes, I would be doing the same thing.
But I miss being able to just have normal conversations. To talking about how other people are doing, how classes are going, what's happening in current events, or even about the weather.
I want it to not be about me.
Wednesday, March 30, 2011
Tuesday, March 22, 2011
The Final Chapter
Earlier this year I felt the need to start reading through the Bible chronologically (i.e. in the order that the events actually occurred, which may or may not be the order in which the books are placed in the actual Bible). Therefore, after getting through Genesis 11:10, I flipped to the middle of my Bible and began reading through Job. Now I began this whole process in January, and actually started reading Job at the beginning of February, long before I had any clue about what was going to happen with me medically.
Well, as I have been saying continuously throughout this whole thing: Jehovah Jireh. The Lord provides. Today I reached the final few chapters of Job, when God finally comes out and provides Job with clarity. Not necessarily the clarity that Job thought he wanted, but absolutely the clarity that he needed. God explained in magnificent, poetic language just how beyond Job’s comprehension His infinite wisdom and understanding are. At the end, Job was satisfied, not because he had answers to the age-old question of why suffering exists, but because he had learned what it meant to fellowship with God in suffering.
I’ve been here at the hospital in Baltimore for the past 21 hours. Late last night, as I was still sitting in the ER admittance area, I was told some of the worst possible news I could be told: my MRIs look normal, better even than before. Now you’d think I would be happy and relieved by this conclusion, but what it means is that we have absolutely no clue what is causing my reoccurring symptoms. We’re back at square one. And square one means weeks and months of re-explaining my symptoms to countless nurses, physician assistants, residents, and specialists. I’m already beyond exhausted. I don’t know how to explain my pain in a way that these medical professional can comprehend and fit within a specific box.
It’s not burning or sharp pain. It’s not tingling or numb. It’s not really aching. It’s just extreme hypersensitivity. To everything. My mom got here today and simply laid her hand on my leg at one point in a gesture of comfort, and I jerked away in pain. Just lying on this bed, my legs will sometimes start shaking because it feels like my nerves are going crazy. Like they’re on hyperdrive.
These are the types of things which I say to the medical staff, and they never seem satisfied. They want me to explain it more, or differently. Just like nine years ago, it doesn’t seem to make sense to them because the pain doesn’t seem to fit within their strict categories of types of pain.
Well, what can I say: I’ve never been one for fitting within predefined boxes.
But getting back to the point: when I heard the news that nothing was wrong, that the MRIs were essentially clear, I just broke down sobbing. I can handle it when I know what to expect, when I know the war path. If it’s that my Chiari decompression surgery wasn’t complete enough or needs to be redone for whatever reason, fine. Do it again. Take some more skull out. Make it better. If it’s that my syrinxes are acting up and need to be shunted: fine. Shunt away. But when you tell me that neurosurgery sees nothing wrong with me and we’re starting over: that, I can’t process. That sends me over the edge.
I spent the rest of the night alternating between sobbing and just staring blankly at the wall, trying not to think about what this all meant.
But I’m coming to realize that, no matter how scary, no matter how overwhelming, God is in control. I know Him. I know His providence and His grace and His love. As the title of this blog (and my next tattoo) references, I know that even in my darkest hour, even when I feel totally alone and abandoned, God is here, hovering over me, protecting me, sheltering me. I will rest in His shadow. Because the Lord will provide. Just like the lesson that Job learned, there’s no point in asking why if you know who God is.
And just as the book of Job ends with Job restored, not because of his personal repentance or righteousness, but because of the Lord’s graciousness, I know that no matter what happens in my life, God will write the last chapter. And it will be beyond anything I could ever imagine. I can’t even begin to describe my elation.
Saturday, March 19, 2011
Updates and Still More Questions
So I guess I should update to let people know what's going on with me. After Monday, I was totally freaked out and had no clue what was happening. My hands and especially my legs all felt like they were on hyper-drive: every touch, every step, every move was excruciatingly painful. My knees gave out on me a few times and I could barely move my feet and toes.
Upon the urgings of my parents, friends, and even my former surgeon (the head of Neurosurgery at the University of Chicago Medical Center), I spent most of the day Tuesday on the phone with doctor's offices and radiologist offices in the area trying to figure out what to do and how to set up appointments for the right tests and such. I finally had an appointment set up for next Thursday (March 24th) with the head of Neurosurgery at Johns Hopkins Medical Center in Baltimore, and two MRI appointments for Friday (i.e. yesterday) and next Tuesday (the 22nd).
Wednesday is my busy school and work day, so I tried to cope with the pain with over-the-counter analgesics like Tylenol and Advil, but nothing was cutting it. About twenty minutes into my first class, I knew without a doubt that I needed to get into an ER as soon as feasible to get some stronger meds and some answers. I somehow made it through the rest of the day on Wednesday, and then my family friend, Mrs. Harrison, who lives near Annapolis, MD came and picked me up from work so that we could head to the ER at Johns Hopkins Medical Center first thing in the morning (or even that night if I couldn't fall asleep). After a long bath (which tends to calm my nerves down a bit), a bunch of Tylenol and Advil, and of course some Rachel Maddow, I finally fell asleep.
I woke up Thursday morning, grabbed a piece of toast, and drove to Baltimore. Mrs. Harrison got to the ER around 10 and of course sat around for awhile. Explained what was happening to a few nurses and to the attending ER physician. They contacted the Neurosurgery team and sent me to a hospital room where I could wait for the on-call neurosurgery resident to come see me. Thanks to my horribly tiny veins and perpetual state of dehydration, it took two nurses four different attempts to get an IV in me. When the neurosurgical resident, Dr. Bydon. finally came, I explained once more what was happening (that my symptoms from before my Chiari Decompression surgery were re-occurring for the first time since the surgery in November 2002), he ordered an MRI and a whole cocktail of meds, including nerve relaxants, analgesic narcotics, and steroids.
Right after I got my first dose of meds around 1:30, they sent me off to get my MRI. Once I got in the MRI, it became clear that the doctor had only ordered me to get my brain and cervical region (upper portion of the spine) studied. The problem with that is that I know that my multiple syrinxes are located in my thoracic and lumbar regions (middle and lower portions of the spine). I asked the MRI tech about it, but she could only do what the doctor ordered.
By the time I got back to my hospital room, it was well after 3 o'clock. A different nurse than my attending came in (my attending nurse was on a lunch break), so I couldn't ask her about the partial MRI. She gave me some more meds, and by that point, with the combination of all of the meds and the magnetic field from the MRI, having only eaten a piece of toast at 8:30am, I was feeling beyond out of it. I ate some crappy hospital food and leaned the uncomfortable hospital bed back to try and sleep (or at least rest) off some of the loopiness.
Mrs. Harrison was no longer with me as she had to go retrieve her children, and because I was so loopy, I couldn't seem to get the nurse to understand that I needed to go back to finish the rest of the necessary MRI. My nurse just said that I'd have to wait to talk to the Neurosurgeon when he came back.
By the time 6 o'clock rolled around, I was feeling much more coherent, Mrs. Harrison was back, and we were just waiting for the doctor to come back in. So far throughout the day, we had been relatively happy with the quality of doctors and nurses we had encountered. I've had a ton of horrific experiences with doctors who just give you the runaround and have no clue what they're talking about, so I was pleased that that didn't seem to be happening here.
Until...
This woman walked into the room. She was wearing typical hospital scrubs, but she had a horribly handwritten stick-on name tag which read "Marcia [don't remember her last name], PA / Physicians Assistant". She had one of those face masks that dentists wear half covering her mouth, and she stood several feet away from my bed at first, saying that she had a cold and didn't want to come near me. She also said that she forgot her name tag, but she really is a Physicians Assistant. Altogether, not the most confidence-inspiring introduction.
Marcia then proceeded to run me through a bunch of typical neurological tests (all of which I've done dozens of times before, including several that day). She made me get up and walk around the room, without making sure I was ok with it and not really caring that it was incredibly painful for me. She also ran a few other more invasive and in no way normal neurological tests which I will refrain from posting in cyberspace. Needless to say, this woman had horrible bedside manner and had no clue about the concept of achieving consent before running tests. We told her that we felt the MRI's they had run were incomplete, and she proceeded to lecture both me and Mrs. Harrison (a former ER triage nurse) about how when you come into the emergency room, they are only required to treat your immediate problems and make sure you're ok to leave. None of which I disagree with, but she said it in such a condescending way and she was so incredibly dismissive of the fact that I was still in extreme pain. All she kept saying was that she was getting ready to discharge me and she listed of a bunch of meds that she was writing me a prescription for, some of which were entirely different from the meds my Neurosurgeon had told me I was going on (and which I had already received doses of). We asked her what meds I had already been given today and when they were given to me. Mrs. Harrison was not in the room when I received my meds, so she hadn't kept track of it, and I was very, very out of it while receiving them, so I had no clue. Marcia, while staring at a computer screen which listed the meds and when the nurses had administered them, could not give us a straight answer. She kept saying one thing, then saying something entirely different. She kept trying to convince me to go on more and different meds, rambling on and on about how she has no actual evidence that certain meds work better, but she knows it does through anecdotal evidence...and on and on and on she went.
I proceeded to explain to her that, in the past, I've gone into the hospital several times, and they've thrown meds at me, and then kicked me out before actually making sure that the meds are working. And then I'm back 24 hours later. After giving us even more runaround medical bullshit, I finally insisted that I see my the neurosurgeon on call again. Marcia protested a few times, saying that she was relaying everything he wanted. We finally got her to cave and she paged the doctor to come see me.
Finally, a little before 9pm, the neurological resident came back in. We explained to him everything that had happened, from the impartial MRI to the horribly incompetent physicians assistant. He apologized profusely, made sure I got the correct prescriptions for the drugs he had originally ordered, told me to keep my appointment for the MRI the next day (i.e Friday/yesterday) to finish off the lumbar and thoracic spine studies, and to call Dr. Weingart's office if I needed anything else.
Finally feeling calm and no longer having horrible flashbacks of all the weeks which I spent dealing with the horrible medical incompetence of doctors who just like to throw drugs at a problem and then walk way, I went home (well, back to the Harrison's house for the night, and then home).
So really all I have right now is a bunch of meds, a complete set of MRIs being sent to multiple doctors (my Dr. from back in Chicago is kind of overseeing the case from afar), and an appointment on Thursday to go figure this all out. I'm feeling better pain-wise, but still quite loopy off-and-on. Especially yesterday after getting the other MRI done...I was quite out of it. Thanks to the wonderful Heather G. for taking care of me. Dr. Bydon kept talking about needing to redo the Decompression surgery, but, as surgeons think about everything in terms of surgery, I'm not actually reading too much into that. I'm just hoping to get some answers.
But I will say this much: I'm all in. There are no questions about that. If this is where God wants me, what He wants me to go through, I'm here. Yes, I never thought I'd have to go through this again. Yes, it's thrown me for a gigantic loop. But, no, I'm not angry or upset. I'm just here. All in.
Upon the urgings of my parents, friends, and even my former surgeon (the head of Neurosurgery at the University of Chicago Medical Center), I spent most of the day Tuesday on the phone with doctor's offices and radiologist offices in the area trying to figure out what to do and how to set up appointments for the right tests and such. I finally had an appointment set up for next Thursday (March 24th) with the head of Neurosurgery at Johns Hopkins Medical Center in Baltimore, and two MRI appointments for Friday (i.e. yesterday) and next Tuesday (the 22nd).
Wednesday is my busy school and work day, so I tried to cope with the pain with over-the-counter analgesics like Tylenol and Advil, but nothing was cutting it. About twenty minutes into my first class, I knew without a doubt that I needed to get into an ER as soon as feasible to get some stronger meds and some answers. I somehow made it through the rest of the day on Wednesday, and then my family friend, Mrs. Harrison, who lives near Annapolis, MD came and picked me up from work so that we could head to the ER at Johns Hopkins Medical Center first thing in the morning (or even that night if I couldn't fall asleep). After a long bath (which tends to calm my nerves down a bit), a bunch of Tylenol and Advil, and of course some Rachel Maddow, I finally fell asleep.
I woke up Thursday morning, grabbed a piece of toast, and drove to Baltimore. Mrs. Harrison got to the ER around 10 and of course sat around for awhile. Explained what was happening to a few nurses and to the attending ER physician. They contacted the Neurosurgery team and sent me to a hospital room where I could wait for the on-call neurosurgery resident to come see me. Thanks to my horribly tiny veins and perpetual state of dehydration, it took two nurses four different attempts to get an IV in me. When the neurosurgical resident, Dr. Bydon. finally came, I explained once more what was happening (that my symptoms from before my Chiari Decompression surgery were re-occurring for the first time since the surgery in November 2002), he ordered an MRI and a whole cocktail of meds, including nerve relaxants, analgesic narcotics, and steroids.
Right after I got my first dose of meds around 1:30, they sent me off to get my MRI. Once I got in the MRI, it became clear that the doctor had only ordered me to get my brain and cervical region (upper portion of the spine) studied. The problem with that is that I know that my multiple syrinxes are located in my thoracic and lumbar regions (middle and lower portions of the spine). I asked the MRI tech about it, but she could only do what the doctor ordered.
By the time I got back to my hospital room, it was well after 3 o'clock. A different nurse than my attending came in (my attending nurse was on a lunch break), so I couldn't ask her about the partial MRI. She gave me some more meds, and by that point, with the combination of all of the meds and the magnetic field from the MRI, having only eaten a piece of toast at 8:30am, I was feeling beyond out of it. I ate some crappy hospital food and leaned the uncomfortable hospital bed back to try and sleep (or at least rest) off some of the loopiness.
Mrs. Harrison was no longer with me as she had to go retrieve her children, and because I was so loopy, I couldn't seem to get the nurse to understand that I needed to go back to finish the rest of the necessary MRI. My nurse just said that I'd have to wait to talk to the Neurosurgeon when he came back.
By the time 6 o'clock rolled around, I was feeling much more coherent, Mrs. Harrison was back, and we were just waiting for the doctor to come back in. So far throughout the day, we had been relatively happy with the quality of doctors and nurses we had encountered. I've had a ton of horrific experiences with doctors who just give you the runaround and have no clue what they're talking about, so I was pleased that that didn't seem to be happening here.
Until...
This woman walked into the room. She was wearing typical hospital scrubs, but she had a horribly handwritten stick-on name tag which read "Marcia [don't remember her last name], PA / Physicians Assistant". She had one of those face masks that dentists wear half covering her mouth, and she stood several feet away from my bed at first, saying that she had a cold and didn't want to come near me. She also said that she forgot her name tag, but she really is a Physicians Assistant. Altogether, not the most confidence-inspiring introduction.
Marcia then proceeded to run me through a bunch of typical neurological tests (all of which I've done dozens of times before, including several that day). She made me get up and walk around the room, without making sure I was ok with it and not really caring that it was incredibly painful for me. She also ran a few other more invasive and in no way normal neurological tests which I will refrain from posting in cyberspace. Needless to say, this woman had horrible bedside manner and had no clue about the concept of achieving consent before running tests. We told her that we felt the MRI's they had run were incomplete, and she proceeded to lecture both me and Mrs. Harrison (a former ER triage nurse) about how when you come into the emergency room, they are only required to treat your immediate problems and make sure you're ok to leave. None of which I disagree with, but she said it in such a condescending way and she was so incredibly dismissive of the fact that I was still in extreme pain. All she kept saying was that she was getting ready to discharge me and she listed of a bunch of meds that she was writing me a prescription for, some of which were entirely different from the meds my Neurosurgeon had told me I was going on (and which I had already received doses of). We asked her what meds I had already been given today and when they were given to me. Mrs. Harrison was not in the room when I received my meds, so she hadn't kept track of it, and I was very, very out of it while receiving them, so I had no clue. Marcia, while staring at a computer screen which listed the meds and when the nurses had administered them, could not give us a straight answer. She kept saying one thing, then saying something entirely different. She kept trying to convince me to go on more and different meds, rambling on and on about how she has no actual evidence that certain meds work better, but she knows it does through anecdotal evidence...and on and on and on she went.
I proceeded to explain to her that, in the past, I've gone into the hospital several times, and they've thrown meds at me, and then kicked me out before actually making sure that the meds are working. And then I'm back 24 hours later. After giving us even more runaround medical bullshit, I finally insisted that I see my the neurosurgeon on call again. Marcia protested a few times, saying that she was relaying everything he wanted. We finally got her to cave and she paged the doctor to come see me.
Finally, a little before 9pm, the neurological resident came back in. We explained to him everything that had happened, from the impartial MRI to the horribly incompetent physicians assistant. He apologized profusely, made sure I got the correct prescriptions for the drugs he had originally ordered, told me to keep my appointment for the MRI the next day (i.e Friday/yesterday) to finish off the lumbar and thoracic spine studies, and to call Dr. Weingart's office if I needed anything else.
Finally feeling calm and no longer having horrible flashbacks of all the weeks which I spent dealing with the horrible medical incompetence of doctors who just like to throw drugs at a problem and then walk way, I went home (well, back to the Harrison's house for the night, and then home).
So really all I have right now is a bunch of meds, a complete set of MRIs being sent to multiple doctors (my Dr. from back in Chicago is kind of overseeing the case from afar), and an appointment on Thursday to go figure this all out. I'm feeling better pain-wise, but still quite loopy off-and-on. Especially yesterday after getting the other MRI done...I was quite out of it. Thanks to the wonderful Heather G. for taking care of me. Dr. Bydon kept talking about needing to redo the Decompression surgery, but, as surgeons think about everything in terms of surgery, I'm not actually reading too much into that. I'm just hoping to get some answers.
But I will say this much: I'm all in. There are no questions about that. If this is where God wants me, what He wants me to go through, I'm here. Yes, I never thought I'd have to go through this again. Yes, it's thrown me for a gigantic loop. But, no, I'm not angry or upset. I'm just here. All in.
Monday, March 14, 2011
How much is "All In"?
I'm always surprised when I find out that people don't know about my past medical issues. I know I shouldn't be. It was almost nine years ago. But it's become such a major part of who I am that I just assume that people know. So operating on the assumption that there are some people out there who may stumble across this blog who do not know, I guess I should give some background:
On August 1st, 2002, I began having extreme pain in my feet and up through my calves. Over the next few weeks and months, this pain progressed and spread throughout my entire body to the point that no one could physically touch me without me screaming in pain, I was sensitive to light and sound, and I couldn't even lie still through an hour-long MRI without shaking uncontrollably because I didn't have the morphine in me to control the pain. After countless pokes and prods (including a spinal tap and the ensuing and oh-so-dreadful spinal headaches), too many tears, more morphine and other narcotics, nerve relaxants, and even anti-depressants than any eleven year old should ever have, we finally found a doctor who knew what the hell he was talking about. Turns out, my brain is literally too big for my skull. The back, lower portion of my brain (the cerebellum) is sticking down through the opening at the base of the skull where the spinal chord connects. This lovely little malformation is known as Chiari, and I was born this way (cue Gaga anthem). Well, long story short, I had a portion of my top vertebra and a piece of my skull removed, and no more pressure, ergo no more pain.
Oh, and there's one other thing. Due to the Chiara, I have a couple (two or three, don't really remember) tiny little bubbles of spinal fluid in my spine known as syrinxes. These are what were putting pressure on my lower spinal chord and thus causing the extreme pain. Well, they're still there. Smaller than original (they steadily shrunk over time), but, last we checked (which was several years ago), they're still there.
I haven't really had any symptoms of Chiari since I had the decompression surgery in November 2002. That is, until last semester. There was one day that I was sitting in class and my feet and legs started feeling strange and painful, and dreadfully familiar. I had a momentary freakout where I re-educated myself about Chiari and the risks of my symptoms re-emerging. But it went away after a few hours so I didn't really think anything of it.
Well it's back. And much worse than last semester. This morning, as I was attempting to concentrate on studying for my midterm, I was making plans in the back of my head for what would happen if I tried to stand up and my legs gave out on me. See that's the lovely think about the syrinxes: they can cause paralysis. With little to no warning. And there's no guarantee, even from the second best neurosurgeon in the world for dealing with this condition, that the surgery would stop the paralysis. Really the only remedy would be spinal surgery, which is pretty much never recommended, as the surgery itself has side effects of...you guessed it: paralysis.
Needless to say, I've been freaking out all day. It hurts to walk; it was painful to grip my pen to take my midterm; my knees keep almost giving out; and I have no clue what to do.
This morning, I felt God say to me that He wants me to give over my fear of paralysis to Him. That's fine in theory, when paralysis isn't just around the corner. But if going "All In" (as my church's most recent sermon series challenges) really requires me to be ok with never walking again, with never having control over my own bodily functions, with never having sex, I just don't know... Or even to have to go through that hell again. The pain. The never ending battery of tests. The uncertainty. The drugs. I just don't know.
And I'm scared as hell. I was ok with giving up my family, my life plans, my friends, my interests...all of that I've surrendered. But I'm so afraid. I always have been, though I rarely let myself acknowledge it. That was one of the scariest times of my life, and I just don't think I have the strength to go there again. Hell, I don't even know if I have the strength to walk home tonight.
How much is required?
He answers: "Everything, because I gave even more."
On August 1st, 2002, I began having extreme pain in my feet and up through my calves. Over the next few weeks and months, this pain progressed and spread throughout my entire body to the point that no one could physically touch me without me screaming in pain, I was sensitive to light and sound, and I couldn't even lie still through an hour-long MRI without shaking uncontrollably because I didn't have the morphine in me to control the pain. After countless pokes and prods (including a spinal tap and the ensuing and oh-so-dreadful spinal headaches), too many tears, more morphine and other narcotics, nerve relaxants, and even anti-depressants than any eleven year old should ever have, we finally found a doctor who knew what the hell he was talking about. Turns out, my brain is literally too big for my skull. The back, lower portion of my brain (the cerebellum) is sticking down through the opening at the base of the skull where the spinal chord connects. This lovely little malformation is known as Chiari, and I was born this way (cue Gaga anthem). Well, long story short, I had a portion of my top vertebra and a piece of my skull removed, and no more pressure, ergo no more pain.
Oh, and there's one other thing. Due to the Chiara, I have a couple (two or three, don't really remember) tiny little bubbles of spinal fluid in my spine known as syrinxes. These are what were putting pressure on my lower spinal chord and thus causing the extreme pain. Well, they're still there. Smaller than original (they steadily shrunk over time), but, last we checked (which was several years ago), they're still there.
I haven't really had any symptoms of Chiari since I had the decompression surgery in November 2002. That is, until last semester. There was one day that I was sitting in class and my feet and legs started feeling strange and painful, and dreadfully familiar. I had a momentary freakout where I re-educated myself about Chiari and the risks of my symptoms re-emerging. But it went away after a few hours so I didn't really think anything of it.
Well it's back. And much worse than last semester. This morning, as I was attempting to concentrate on studying for my midterm, I was making plans in the back of my head for what would happen if I tried to stand up and my legs gave out on me. See that's the lovely think about the syrinxes: they can cause paralysis. With little to no warning. And there's no guarantee, even from the second best neurosurgeon in the world for dealing with this condition, that the surgery would stop the paralysis. Really the only remedy would be spinal surgery, which is pretty much never recommended, as the surgery itself has side effects of...you guessed it: paralysis.
Needless to say, I've been freaking out all day. It hurts to walk; it was painful to grip my pen to take my midterm; my knees keep almost giving out; and I have no clue what to do.
This morning, I felt God say to me that He wants me to give over my fear of paralysis to Him. That's fine in theory, when paralysis isn't just around the corner. But if going "All In" (as my church's most recent sermon series challenges) really requires me to be ok with never walking again, with never having control over my own bodily functions, with never having sex, I just don't know... Or even to have to go through that hell again. The pain. The never ending battery of tests. The uncertainty. The drugs. I just don't know.
And I'm scared as hell. I was ok with giving up my family, my life plans, my friends, my interests...all of that I've surrendered. But I'm so afraid. I always have been, though I rarely let myself acknowledge it. That was one of the scariest times of my life, and I just don't think I have the strength to go there again. Hell, I don't even know if I have the strength to walk home tonight.
How much is required?
He answers: "Everything, because I gave even more."
Thursday, March 10, 2011
Where does morality come from?
To some people, especially religious-leaning people, it probably seems like a fairly simple question. I used to believe that every person inherently knew the basics of right and wrong. It didn't have to be taught. It was just there, endowed by God at birth and manifesting at a very young age. But what about the answers to all of those supposedly "moral" questions that don't come instinctively? I don't know about anyone else, but I personally don't know, by instinct alone, whether or not it's ok to have sex outside of marriage, to swear, to work only an acceptable amount instead of my very best... When answering these questions, I need to look outside of my basic human instincts. I must look to my experiences, to my upbringing, to the advice and counsel of those around me, and to my God. The answers are not instinctive.
Now most people would probably say in retort to this that some moral issues still are instinctive, and the classic example is usually murder. No one instinctively thinks that it's ok to take someone else's life. That's the line in the sand. That's the big f-ing deal.
And yet.
A couple days ago I re-watched The Reader. By the way, the movie is absolutely stunning. It has a lot of sexual content in it, but it's the one movie that I would recommend people who would normally not watch stuff like that to just get through the first half. The second half is so powerful, and the first half is essential to understanding it. That being said, if you really want to see the movie and don't want me spoil the whole thing, stop reading now, go watch it (borrow it from me, if you're in DC), then come back and finish reading.
While the movie seems to portray the central issue to be the shame of illiteracy, for me it raised much deeper questions. Does one being literate make one understand morality? Did Kate Winslet's character, Hannah Schmitz, honestly and naively believe that it was more important to follow orders and do her job as an Auschwitz guard than to spare the lives of dozens or even hundreds of people? Is her illiteracy to blame for her crimes? Or is her illiteracy a product of some mental deficiency which is in turn the cause of her seeming lack of morality? She didn't seem to think it was at all a problem, as a middle-aged woman, to seduce, sleep and carry on with, and then mysteriously dump a fifteen year old boy. Is it then a logical extension that she wouldn't understand how murder by order of her superiors could be wrong? I don't think Hannah's illiteracy is the central issue here. I think her morality is. She isn't portrayed as a psychopath (someone completely devoid of emotions) or a sociopath (someone incapable of empathizing with someone else's emotions). To me, at least, she seemed sincerely incapable of understanding the immorality of her actions. So what went wrong in this woman that she couldn't comprehend the most basic moral questions? Or does it go deeper than that? Are these moral questions really not as "simple" as we would like to believe?
Now, I realize that this is a movie, so you can really only extrapolate so much. But what about the now infamous Stanford Prison Experiment?
These were just normal college boys back in the early 1970s. And given a few days and a little bit of power, many of the "guards" became monsters. The worst of the guards, the one known as "John Wayne" stated afterwards that he just wanted to see how far he could push the "prisoners". These people were not given orders to use cruelty of any kind. They were even instructed to not use any forms of physical abuse. But they could use psychological abuse, and so they did. This was a fake situation in which everyone knew that at the end of the two week period, everyone would get out and resume their normal lives. How much harder must it be for real-life prison guards, who are often given at least implicit permission to use physical abuse, to be governed by some universal standard of morality?
Now, obviously, I'm not saying that the guards in the Stanford Prison Experiment were in the right. I think their actions were atrocious. And I feel exponentially stronger that the guards at Abu Ghraib and, of course, Auschwitz, were committing atrocities in the strongest sense of the word. I could never and will never attempt to condone actions such as these. But I still have to wonder, what is it about situations like prisons which seem to bring out the absolute worst in the people serving as guards, and afterwards, when asked to look back at what they've done, the perpetrators seem perplexed by the backlash. They were just following orders. They were just doing their jobs.
What would each and every one of us do in the name of following orders, doing our jobs, or even maintaining pride? In an abstract land of comfort and ease, it seems easy enough to say that we'd follow a strict, moral line. But both scientific experiments (albeit incredibly flawed) and real-life experiences seem to suggest that these questions of morality, even the big, line-in-the sand type questions are not easy or instinctive. In fact, our instincts may even seem to scream the opposite of the "correct" moral answer in certain cases.
Possibly due to her upbringing, life experiences, or even her illiteracy, Hannah Schmitz took the blame for killing hundreds of innocents, seeming to truly not understand why it was wrong. Similarly, guards at Abu Ghraib took pictures such as the now infamous one below with smiling faces and dead bodies, saying afterwards that it was only natural to smile for the camera.
It would be easy to try and blame the immoral things which our fellow man does on some villainous figure such as Hitler, Stalin, or Osama Bin Ladin. But the truth is that all too often, oftentimes without being fully aware of what they're doing, normal human beings commit atrocities on an epic scale. And it can't always be blamed on some fancy mental condition which conveniently takes the blame off of humanity. The world has tried, over the years, to come to terms with its own brokenness. And each time we collectively pledge: "never again!" And yet again and again, it keeps happening. And we keep looking away. Maybe because some part of us knows that, if we were in the same position of power, there's no guarantee that there would be a different outcome. Because the concept of inherent morality, while nice on paper, doesn't seem to have played out very well over the last few thousand years.
Now most people would probably say in retort to this that some moral issues still are instinctive, and the classic example is usually murder. No one instinctively thinks that it's ok to take someone else's life. That's the line in the sand. That's the big f-ing deal.
And yet.
A couple days ago I re-watched The Reader. By the way, the movie is absolutely stunning. It has a lot of sexual content in it, but it's the one movie that I would recommend people who would normally not watch stuff like that to just get through the first half. The second half is so powerful, and the first half is essential to understanding it. That being said, if you really want to see the movie and don't want me spoil the whole thing, stop reading now, go watch it (borrow it from me, if you're in DC), then come back and finish reading.
While the movie seems to portray the central issue to be the shame of illiteracy, for me it raised much deeper questions. Does one being literate make one understand morality? Did Kate Winslet's character, Hannah Schmitz, honestly and naively believe that it was more important to follow orders and do her job as an Auschwitz guard than to spare the lives of dozens or even hundreds of people? Is her illiteracy to blame for her crimes? Or is her illiteracy a product of some mental deficiency which is in turn the cause of her seeming lack of morality? She didn't seem to think it was at all a problem, as a middle-aged woman, to seduce, sleep and carry on with, and then mysteriously dump a fifteen year old boy. Is it then a logical extension that she wouldn't understand how murder by order of her superiors could be wrong? I don't think Hannah's illiteracy is the central issue here. I think her morality is. She isn't portrayed as a psychopath (someone completely devoid of emotions) or a sociopath (someone incapable of empathizing with someone else's emotions). To me, at least, she seemed sincerely incapable of understanding the immorality of her actions. So what went wrong in this woman that she couldn't comprehend the most basic moral questions? Or does it go deeper than that? Are these moral questions really not as "simple" as we would like to believe?
Now, I realize that this is a movie, so you can really only extrapolate so much. But what about the now infamous Stanford Prison Experiment?
These were just normal college boys back in the early 1970s. And given a few days and a little bit of power, many of the "guards" became monsters. The worst of the guards, the one known as "John Wayne" stated afterwards that he just wanted to see how far he could push the "prisoners". These people were not given orders to use cruelty of any kind. They were even instructed to not use any forms of physical abuse. But they could use psychological abuse, and so they did. This was a fake situation in which everyone knew that at the end of the two week period, everyone would get out and resume their normal lives. How much harder must it be for real-life prison guards, who are often given at least implicit permission to use physical abuse, to be governed by some universal standard of morality?
Now, obviously, I'm not saying that the guards in the Stanford Prison Experiment were in the right. I think their actions were atrocious. And I feel exponentially stronger that the guards at Abu Ghraib and, of course, Auschwitz, were committing atrocities in the strongest sense of the word. I could never and will never attempt to condone actions such as these. But I still have to wonder, what is it about situations like prisons which seem to bring out the absolute worst in the people serving as guards, and afterwards, when asked to look back at what they've done, the perpetrators seem perplexed by the backlash. They were just following orders. They were just doing their jobs.
What would each and every one of us do in the name of following orders, doing our jobs, or even maintaining pride? In an abstract land of comfort and ease, it seems easy enough to say that we'd follow a strict, moral line. But both scientific experiments (albeit incredibly flawed) and real-life experiences seem to suggest that these questions of morality, even the big, line-in-the sand type questions are not easy or instinctive. In fact, our instincts may even seem to scream the opposite of the "correct" moral answer in certain cases.
Possibly due to her upbringing, life experiences, or even her illiteracy, Hannah Schmitz took the blame for killing hundreds of innocents, seeming to truly not understand why it was wrong. Similarly, guards at Abu Ghraib took pictures such as the now infamous one below with smiling faces and dead bodies, saying afterwards that it was only natural to smile for the camera.
It would be easy to try and blame the immoral things which our fellow man does on some villainous figure such as Hitler, Stalin, or Osama Bin Ladin. But the truth is that all too often, oftentimes without being fully aware of what they're doing, normal human beings commit atrocities on an epic scale. And it can't always be blamed on some fancy mental condition which conveniently takes the blame off of humanity. The world has tried, over the years, to come to terms with its own brokenness. And each time we collectively pledge: "never again!" And yet again and again, it keeps happening. And we keep looking away. Maybe because some part of us knows that, if we were in the same position of power, there's no guarantee that there would be a different outcome. Because the concept of inherent morality, while nice on paper, doesn't seem to have played out very well over the last few thousand years.
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