Limitless

I recently got a hair cut.

Not that uncommon for me, especially recently.  I love trying new styles and going edgier and edgier without crossing the line into unprofessional for my line of work.

What makes this hair cut different, why it spurred me to dust off my semi-annual blogging shoes is because of what it exposes.

You can see my scar.

The scar I got at 11 years old when a neurosurgeon cut into my head.  The scar that ended the pain I had been living with for months.  The scar that meant my rescue.

I've had this scar now for more years than I lived before I got it.  It's part of me.  But I don't think I ever really wanted it to be.  Yeah, the medical struggles I went through as a kid were something I'd bring up in casual conversation.  I'd randomly and sarcastically say that my brain is too big for my skull and I have the scar to prove it.

But it wasn't something I really, truly wanted people to know about me.  And I think I finally know why.

It's because I didn't know what it meant about me.  And I think cutting off my hair, exposing the visual proof of what I went through, what I survived, this piece of me that shapes so much of who I am is actually forcing me to come to terms with it all.

But, you know, it's not actually about exposing to the world the fact that I had brain surgery.  What's so different about leaving my scar exposed is that it forces me to think about what I went through.  About the pain.

Chronic pain is a singular experience.  I don't think anyone who hasn't lived through months and then years of uncontrollable, debilitating, life-altering pain can ever grasp the impact it has on a person's life.  You just don't get it till you do.

When I was 11, I dealt with chronic pain for 4 months.  It started August 1st, 2002 and ended November 22, 2002.  And it changed me.  When I was 20, in my junior year of undergrad, I started on a journey of chronic pain that wouldn't stop for nearly two years.  It started in March of 2011 and wouldn't finally stop until January of 2013.  And that journey changed me more.

Those are facts and dates that I know and even talk about if it comes up in conversation.  But I don't often stop, sit, and think about what it actually means for me.

You know with bar applications due this week and work supervisors giving me their tips and tricks on studying for the bar, the topic of how difficult the bar is has come up quite a few times.  And quite a few times I've heard classmates or co-workers or supervisors tell me that taking the bar exam will be the hardest thing I ever do in my life.

I honestly have to stop myself from laughing every goddamn time I hear it.

I know I haven't been there yet, I know I have no clue how time/life-consuming studying will be.  I know that I have no clue how mentally, emotionally, and physically draining actually sitting down and taking that test will be.  I don't know.

But I do know this with absolute certainty: on my list of hardest things I've gone through in my life, it won't even rank in the top 5.

There's something about living with chronic pain that gives you the confidence to understand exactly how far you can go.  I didn't think I could make it.  But then I did.  And now I know.  I know exactly how much I can take.

I know that I can make it through the most grueling academic transition of my life (first semester of law school), all while barely being able to walk or even use my hands.  I made it through first year while hopped up on a huge cocktail of medications, medications that enabled me to show up to class, but that was about it.  My mind was so gone half the time, both from the mind-altering effects of the drugs and the emotional and psychological drain of the physical pain, only slightly dulled by the meds.  I couldn't concentrate in classes.  There was one night I got home from class and the pain, which was normally just in my arms and legs, extended to the rest of my body.  My neck was stiff and I couldn't move.  It was like I was paralyzed.  I might have even been on my way.  I had to be rushed to the ER so they could give me IV dilaudid (read: drug store heroin) and then a lumbar puncture (i.e. my worst fear on the face of the planet).  I went home and then got up and went to school the next morning and started again.

I made it through.  I made it through the chronic pain and the academic load, and on top of all of this, I was struggling with and finally coming to terms with my own sexuality.  By the end of my first year of law school, I had come out, to myself, to my closest friends, to my family, and finally to everyone else.  I had surgery on my spine and side to finally alleviate the pain.  I slowly but surely recovered from that shunt surgery.  I weaned myself off of all the medications I had been relying on to simply keep moving for the prior two years.

I made it through the most grueling, physically painful, emotionally and psychologically draining year of my life.  And then I kept moving.  Because that's one of the things that chronic pain teaches you: you can't stop.  You can't pretend that the pain isn't there, but you can't put your life on hold just because it hurts.  You have got to push forward.  Which is exactly why I don't often stop and take stock of what my journey through chronic pain has taught me.  Because life keeps going.  So did law school, and I had to catch up.

But then I chopped my hair off.  And I realized that everyone I encounter, when they look at the back of my head, will know that something has happened to me in the past that has shaped me, that has forever altered me.  And, you know what?  Before I went through that two year long chronic pain journey, I never would have had the confidence to show off my scar.  But now I do.  Now there's very little that I don't have the confidence to do.  Because, as I said, I know my limits.  Which is to say, I know that I don't have any that I can't push through if I need to.  I know that you strip everything away from me and I'll keep going.

The Real Reason

I just got a new tattoo, and I know that throughout my life people will ask for an explanation to these pain-stricken words: “I’m standing on the mouth of hell and it’s going to swallow me whole.  And it’ll choke on me.”

When people ask this question I know what I will tell them.  I’ll say that fighting for justice for survivors of sex crimes will place me square on the mouth of hell.  But I will beat it back.  I will stand firm.  And hell will choke on me.

And all of that’s true.  But to be honest, that’s the kosher answer.  That’s the one fit for public consumption.

I know that I won’t go into the details of the hell I stand on every day, the hell that is so much more personal.  It’s a hell that I keep hidden from all but a few.

My hell involves living every day with the knowledge that my limits will be stretched,and beaten down, and broken.  Until there’s nothing left.  Whether it’s the physical pain that I’ve dealt with every fucking day for nearly two years now; the perpetual desire to lose myself in the nothingness and numbness of self-injury, depression, and suicide; or the completely hidden parts of myself that I’m still afraid to show to all but a few.

These things are my hell.  And all of these things threaten to swallow me every fucking day.  And every day I must beat them back.  Every day I must force hell to choke on me.

And I’m not that strong.  But I do have faith.  I do know that one day I will break free.

 So I have these words perpetually etched onto my body.  Because I will stay in this fight.  I will stand firm.  And whether it’s the public battle against sex crime that will consume the rest of my life or the private wars that threaten me every day, I will triumph.  And hell will choke.

Reaching My Limit

I'm beginning to ask myself, "Where is my limit?"

Over the past year and half, I have been dealing with a major neurological disorder that causes excruciating pain throughout my extremities.  I used to deal with this same type of pain when I was a kid, but it only lasted for a total of three months before we found an answer and a solution.  It was a grave and painful solution (brain surgery at the age of 11 usually is), but it was over.  Or so I thought.

When this all started up again last March, I declared the following:

"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."

I said this before I knew what was really going on.  And I'm now coming to realize that I truly had no idea what I was getting myself into.  Since that first trip to the Johns Hopkins emergency room, I have been to emergency rooms across the country several times, been to dozens upon dozens of doctors appointments, and taken literally thousands of pills to try and moderate my symptoms.  After ruling out the initial theory (that my condition from when I was 11 was wreaking havoc again and so they would need to redo the original surgery), I was eventually diagnosed with elevated cerebrospinal fluid pressure  This elevated pressure is pressing against my spine, causing the aforementioned extremity pain.  The longer this goes untreated, the more the pressure on my spine increases and spreads, causing ever more excruciating pain from the tips of my fingers to my shoulders, from my hips down to my littlest toe, and, recently, into my torso and neck.

There simply aren't words to adequately describe what it's like to live in a state of near constant physical pain for 19 months and counting.  Sure, I get periodic relief from lumbar punctures, diuretics  nerve relaxants, and narcotics, but it doesn't completely go away.  At least not for long.  I don't even think I remember what it's like to walk without some degree of pain, to write an in-class exam without my hand feeling like it was dying from pain by the end, or to ride in some form of mass transportation without the alternately steady and jerking motions making my nerves go haywire.  I can't fully explain the physical, emotional, and mental toll it takes on me to have to bear this pain.

I'm surrounded by family members, friends, and even acquaintances telling me how sorry they are that I'm going through this and how much they wish they could take it all away.  Recently, it takes everything in me not to just scream at them, "Well you can't take it away, so why don't you shove your useless sympathy where the sun don't shine!!!!"

I know these people mean only to express love and solidarity through their platitudes.  I get it.  I've done the same thing when I'm in their shoes, witnessing someone forced to go through some horribly painful experience alone.

And that's just the thing: I am alone in this.  There's not a single person in the world that can actually lift the burden of this pain off of my shoulders.  No one else has to suffer under the crushing weight of having no guaranteed end in sight.  No one else knows what it's like to regret pursuing their own passion and calling in life because the burden they are carrying will almost certainly cause them to falter and fail.

Back before I declared myself "All in," I did attempt to contemplate the ramifications of that commitment.  I ended that blog post with this:

 "How much is required? He [God] answers: 'Everything, because I gave even more.'"


With everything that is happening to me, I've been contemplating human limits, and I've been wondering about my breaking point.  You see, what I'm afraid to admit to anyone is that I feel like I'm cracking.  Like after all of these many months, I'm finally breaking apart; I fear that I'm reaching my limit.

But here's the thing: Jesus came here as a man.  And the night before He was to be arrested, tried, and summarily and brutally executed, He was weak.  In the garden of Gethsemane, Jesus prayed to His own Father to take this burden off of His shoulders.  Jesus thought that He was at His breaking point.  So He asked to get out.

God denied His Son's request.

So Jesus went forward.  And in those final moments, after enduring all of that brutality, after taking every ounce of physical, emotional, and mental pain the world (and God) could throw at Him, Jesus breathed His last.  And I can't help but ask, how did Jesus, instead of whispering, "Into Your hands I commit my Spirit," not scream, "Fuck you, God, you bastard!!"

But, no, Jesus did not scream obscenities at God.  Despite thinking that He was at His limit in Gethsemane, Jesus never reached His limit on Calvary.  He made it through, and thus saved us all.

And yet Jesus, despite being the Son of God, was completely human.  And every human has his or her limits.  So where was Jesus' limit, if not on Calvary?  Do limits only come through sin, because that doesn't make a whole lot of sense.  But I digress...

Everyone has his or her limits.  I know that I have them.  I may not be completely self-aware as to where they lie, but I know that there are points past which I cannot be pushed without breaking, without cracking wide open and losing the wholeness of who I am.

Through all of this, I'm not doubting God's sovereignty, his love, or any of His other amazing qualities that I've grown ever more in love with over the years.  But I do doubt myself.  I doubt that I can last much longer, and I doubt that I'll be able to find any point in any of this if it ever does come to an end.

And I think what I hate most of all is that I am doubting that God will stop all of this before I truly have reached my limit.  I'm worried that, in the end, I'll be cursing the name of the very God that I love so much, having reached my limit, broken apart, and lost whole segments of who I am, including my faith.

Show Your Mercy New

I have been so incredibly ungrateful.  Over the past several months, God has proven himself more faithful than I could ever hope to imagine.  And yet...it's like once He's done what I need Him to do, I practically just forget that He ever existed.  So now there's only one thing that I can do: simply ask, knowing what His answer has been and will always be, "Lord, have mercy."

From this past March till the beginning of June, I was suffering from debilitating and seemingly inexplicable pain.  Most of the time I could barely walk, and when I could it was only with the aid of huge amounts of narcotics and nerve relaxants.  An entire neuro-surgical team at Johns Hopkins Hospital couldn't find anything wrong with me, and I was trying to mentally prepare myself for the possibility that I may be searching for the rest of my life for answers and never find them, and that I may have to remain in a constant mental and emotional flux due to the extreme amounts of medications needed to simply hold my pain to a manageable level.

And then my old doctor from back in Chicago had an idea: he thought that maybe my spinal fluid level was elevated and that with a lumbar puncture this level could be tested and then reduced.  In theory, this could completely alleviate my pain.

You'd think that this potential solution would excite me and give me hope.  Instead, it filled me with a dread and fear worse than anything I can remember.  You see, having to have a spinal tap again was one of my greatest fears in life.  When I was eleven and initially going through the ringer of medical tests before my doctors discovered that I have Chiari Malformation, I had several MRIs, and on one of them the doctors saw a blurry spot.  This could simply mean that I moved ever so slightly during the taking of that image or it could mean something much worse (i.e. a tumor or some other irregularity in my spinal column).  My doctor recommended a spinal tap, and my parents consented.

The actual procedure itself, while uncomfortable and quite annoying, wasn't that bad (probably mostly due to the fact that I had no real clue what they were doing, and thus my nerves couldn't set in).  The worst part was afterwards.  First, I had to lay flat on my back for upwards of six hours.  For an eleven year old kid, this seemed like torture.  I couldn't get up to eat or go to the bathroom or even just to stretch.  I had to remain relatively still and could only switch positions from my back to my side (or vise versa) every so often.  The reason for all of this was to make sure that my spine had time to form a clot over the hole which the spinal tap put in it.

While I vaguely remember this six plus hour process as being beyond annoying, that's not really what sticks out in my mind.  What I remember most vividly, what still makes me cringe at the very thought was the one thing that laying on my back for over six hours was supposed to prevent: spinal headaches (and all the wonderful things that come with it).

At some point while lying on my back in the hospital room, the doctors came back in with the results of the spinal tap: everything was fine and the initial assumption was assumed correct (I probably moved ever so slightly during the MRI process).  After about five and a half hours of lying flat on my back, I actually ended up falling asleep for about an hour and a half and was thus flat on my back for at least seven hours.  After I woke up, the doctors sent me home essentially because they had run out of ideas to explain my pain and I was reasonably well medicated.

The next couple days were filled with a pain that I can just barely begin to explain.  My head literally felt like it was going to explode.  My room had to be blackened as much as possible and my family could only speak to me in whispers.  Every time I had to raise my head above my heart, these symptoms multiplied tenfold and I would begin to throw up violently and uncontrollably.  I barely let myself eat or drink.  This lasted for about a day and a half when my parents knew that I simply couldn't go on like this.  They took me back to the hospital where the doctors drew some blood out of my arm to essentially force a clot to form over the hole in my spinal cord where my spinal fluid was leaking.

These memories are some of the worst in my life.  On a scale of one to ten, the pain that I felt was easily skyrocketing past a twelve.  So knowing that I might have to go through it again terrified me.  But at the same, I knew that I couldn't keep living like that.  I couldn't spend the rest of my life feeling high out of my mind on narcotics while still only barely able to walk.

So when I went home in June, I scheduled an appointment with my old doctor in Chicago.  We scheduled the lumbar puncture for the day after my LSAT, which actually meant that I couldn't focus on my potentially paralyzing fear, so that was good (although the stress of studying for the LSAT wasn't necessarily a fun alternative).

The actual procedure turned out to be not that bad.  They put me under anesthesia, so I remember very little. After I had been in recovery for about an hour, the nurse started talking to me about sitting up.  This is when my fear really set in.  It took me probably another hour or so to get up the courage to just tilt the bed forward a little.  Over the next several hours and even days, I was incredibly anxious at even the slightest pressure or pain in my head.

But the headaches never came.

I have yet to really sit down and process what all this means.  Since I had that lumbar puncture and they drained a huge portion of my spinal fluid, I have yet to feel like I cannot walk down the hall.  To be perfectly honest, the hardest thing since then has been both getting off of my narcotics and building back up my endurance after having been forced to remain relatively sedentary for several months.  For the past week or so, I have been pretty much off of my narcotics (for the first time in months) and my endurance is coming back.

You'd think that I'd be shouting about the amazing provision of God from every rooftop I can.  And yet...

And then at the end of last month, it became quite evident that my maternal grandfather's leukemia had progressed rapidly and he would only have a couple more days to live.  I've only begun to process everything that happened in the days before and after my grandpa's death, but there's one thing that I know for sure: the one thing that I asked God for was some form of reassurance that my Grandpa was truly a man of faith.  You see, everyone had been saying that we knew he was going to a better place and that he was just "graduating" into heaven and other such platitudes.  But the thing is that for my entire life my grandfather has always just been a man that I see at most a few times a year.  I loved him dearly and will always remember his love and sense of humour incredibly fondly.  But unlike my paternal grandfather of whom practically my every memory is of him telling stories about how God has worked in his life or professing his incredible faith, my memories of my maternal grandfather are all about him playing games and telling jokes to me and and my brothers.  The day that my grandfather died, when I knew that he only had a few hours left, I lay on a park bench just crying because while every one else had such confidence about where my Grandpa was going, I felt like I couldn't know.  While I know that no one but God can ever know for sure, there can at least be a reasonable degree of confidence if you know the person's heart.  I cried because I never really knew my Grandpa, at least not on a spiritual level.

A few hours later I got the call from my Dad that my grandpa had passed and the story that he told me took my breath away:  throughout that whole day, my grandfather had been almost entirely out of it, never fully having a lucid moment.  Furthermore, he rarely had his eyes opened, and when he did they were foggy and unfocused.  But in the moments before his death, my grandfather opened his eyes, clear as ever, tried his hardest to sit up, hum, and sing along to his favourite hymn: "How Great Thou Art".  After he sang through the whole song once, my mother and aunt told their daddy to go home.  And he breathed his last.

My grandfather died with a song in his heart and worship on his lips.  And I know that, at least in part, my grandfather died in that incredible, God-filled way in answer to my prayer.  My grandfather's death was God's amazing way of giving me peace.

Yet I haven't admitted that to anyone.  Until now that is.  And I really can't seem to figure out why.  I don't know why I feel like I can't admit how much God has done for me.  I'm still in this place where, if my Christian friends are talking on the metro about how God is working in their lives, I still look around, worried that some people within earshot might hear what we're talking about and think that we're crazy.  I don't entirely know why I'm like this, but I do know that it needs to change.  I need to be bolder and I need to be so much more willing to just be honest about who I am and what I believe.

So I claim God's mercy, because I know that it truly is new every morning.  So tomorrow I will begin a new day, and maybe tomorrow I will be just a little bit bolder and I little bit less shy about everything that I am and everything that God is, and how incredibly amazing He has been in my life.  Maybe I'll actually be able to use this testimony and this voice and these words to impact someone's life, someone else who is desperately crying out for some reassure, crying out for answers, crying out for some peace.

I might actually be good at this...

I know I said a couple weeks ago that I'd write a post updating you all on what has happened with my medical situation, and I really have been trying to...for the past two weeks...  And it's just become this long, rambling, and fairly incoherent post with no actual point.  I'd be happy to give actual details to anyone who really wants to know, just Facebook me or email me or whatever.  But suffice it to say that I went back to my old doctor at the University of Chicago and he had a solution...a solution that scared the shit out of me (due to a horrendous past experience), but by the power of Jehovah alone, I was able to get through it.  And for the past two weeks, I've been relatively pain free...for the first time in about three months (except for the fact that I'm going through major narcotic withdrawal, which is never fun).

But that's not the reason I'm writing this.  I'm writing this because, yesterday, I went on my second hospital advocacy call with the DC Rape Crisis Center.  And it was...intense, to say the least, but it also served as an amazing reminder of where I'm going and what I need to be doing with my life.  And it re-confirmed that I might actually be good at this...

Since school ended I've been focusing pretty much all my attention (with the exception of studying for and taking the LSAT) on my political interests.  I've been interning at EMILY's List, an organization that works at all levels, (national, state and local) to elect pro-choice democratic women.  Furthermore, working at this incredible (and remarkably influential) organization, I've begun to believe that my next step after graduation (this coming December) may be working on a campaign.  And this place can get me there  After asking some former interns if they had any specific advice regarding how to get onto a campaign, the thing which stuck out in my mind the most was one of the former interns saying, "Think about and write down the five names of the people on whose campaigns you would most like to work.  Then talk to people here [at EMILY's List].  They'll make it happen."

 My jaw is still kind of on the floor after that one.

See, when I applied for this internship, I knew that I loved EL and that it had a great mission and had done some cool things.  I had absolutely zero conception of their reach.  I didn't know that the President of EMILY's List, Stephanie Schriock, was the campaign manager for Al Franken.  Yeah, that campaign.  I had no clue that Denise Feriozzi, the director of the WOMEN VOTE! department (basically, EL's Get Out The Vote arm) was the Field Director for Hillary Clinton's Iowa Caucus race.

This place is incredible, and there are so many people here that I can learn from and so much to do that I agree with and love doing.  But...

There's that little thing in the back of my head that I know: This just isn't my passion.  Yeah, I love it, and in so many ways I'm obsessed with it, but it's not my calling.  It intrigues me, amuses me, and excites me, but I don't have that guttural need to do this.  Not like when I'm touching on anything to do with combating sexual violence.

That's where this past weekend comes in.  As many of you probably know, I'm a volunteer at the DC Rape Crisis Center, and I take both crisis hotline calls and hospital advocacy shifts.  Well, on Saturday I had an advocacy shift and, for only the second time since starting, I got called in.  Now, as usual, I can't actually talk about details, but needless to say it was a very intense call.  But beyond all that, for me, it was a remarkable affirmation of who I'm meant to be, of everything I'm meant to do.  Because this was my second time going on an advo call, I was confident enough about where I was going and what I was doing that I could actually just settle in and trust my instincts.  And as I've seen many times in the past, that's when I actually can do a good job.  After the major portion of the call was over, I had a moment alone with the SANE (Sexual Assault Nurse Examiner), and even though throughout the call I thought I had been getting very mixed signals from her, she actually told me that I had done a really good job, and she was shocked that it was only my second call.  Later, as I was spending a few final minutes with the survivor, she told me that I had made the whole process much easier for her and that she thought I would do a great job as a sex crimes prosecutor.

I'm not repeating all of this to try and toot my own horn or brag or whatever.  It's just that as I'm getting deeper and deeper into the political world, I love remembering what my true calling is.  And I need to remind myself that politics isn't it, as much as I may love this crazy world of American politics.

Oh, and by the way: I'm an American citizen now.  It's very weird...

It's not about me

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.

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.

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.

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."