Wednesday, March 25, 2009

The Good Ones Are Always Taken

I walked into the intensive care unit at Arkansas Children's Hospital.  I was apprehensive as the nurse helped me don the gown and mask over my cutoffs and t-shirt; I was only 17 and not yet accustomed to the medical environment.  There was one isolation booth at the center of the ICU, it was a square glass unit reminiscent of a transparent house of cards.  The life inside was propped up as tenuously as my brain's analogy.  It was my brother, Michael.  He was 10 years old.

It was 1990, and I had only been off to college for a few months.  My previously robust brother had been undergoing aggressive treatment for a diagnosis he had received while I was spelunking on my pre-orientation trip to Hendrix College in Ponca, Arkansas.  He was being tested at that time because he had become cachectic and sallow over a period of a few months and no one could figure out the etiology.  Before we knew it was serious, my sister and I jokingly dubbed him Skeletor, the villain on the He-Man cartoon he liked to watch.

I was reluctant to go on pre-or for many reasons:  I was worried about my brother, I was 16 and headed off to college, I wondered why I in the hell I had picked spelunking on the form a few months earlier.  I had no experience with spelunking.  Neither did our guides, a young chemistry professor and his wife.  Although there were 12-15 other freshmen on the trip, I don't remember any of them.  I do remember sweating profusely as we hiked through the forest to the entrance of the cave, and silently cursing our guides who had advised us to suit up for subterranean temperatures under our backpacks that morning; it is over 100 degrees and extremely humid in Arkansas in August and the hike was a lot longer than they had anticipated.  My gear was weighing as heavy on my body as my brother was on my mind.  At one point, I stopped and fell behind to strip off a few layers down to my t-shirt.  I don't function well when I am overheated, and I am easily overheated.  I wanted to quit.  Then I thought of my brother, the rigorous testing he was going through, the uncertainty of it all, and felt inadequate indulging in my own seemingly incomparable struggles.  This marked the first instance of a pattern I unconsciously created of using Michael as a benchmark to push myself forward throughout my life.

I have two other vivid memories of that spelunking trip.  One is sitting in the cold cave in the dark (my layers were back on).  Our novice leaders had advised us to turn off the lights on our hats to save batteries; we were lost and they spent the better part of two hours arguing over which way to go next on the map.  It seemed like an eternity.  I was hungry, but worried about delving into the last of my granola bar stash; after all, how hungry was hungry?  If we were really lost, wouldn't I need every bite?  I hoped I would make it out of the cave, I was supposed to call my mom that evening and find out the results of Mike's tests.  I hoped that if I didn't call she would realize something was awry and call for help.  Luckily, a decision was finally reached, and we pressed on uneventfully.

When we emerged from the cave at the end of the day it was raining.  We hiked back to camp and someone drove me into town to the pay phone at the Ponca General Store.  In 1990, cell phones were not yet ubiquitous; the chunky premature versions were only possessed by important people like doctors and government higher-ups.  Soon after I dialed the rotary phone, my mom picked up and recognized my voice.  "Thank goodness it isn't cancer!  They thought it might be cancer.  It's something different.  Inflamed bowels.  Something called Crohn's disease."

Later I would learn that the diagnosis meant my brother's immune system was launching a full-scale attack against his bowels, stem to stern, as if they were an alien intruder, and would continue to do so for the remainder of his life.  Currently, it was the treatment that had landed him in the situation he was in.  The battery of drugs that was suppressing his immune system from attacking his gut was also leaving him susceptible to all sorts of invisible microbes and viruses, ones that could plan their attack with stealth and surprise.  My dad had called me at Hendrix earlier that morning summoning a family lunch meeting at a restaurant in downtown LR.  My brother was in a coma at ACH.  My mom was somewhere in India, as yet unaware of the situation.  I slowly pieced together the details from my sister, who was still in her senior year of high school, and my dad.

My brother had been complaining to my dad about his legs hurting.  Although my dad was on call and was supposed to be at the hospital, he was home between admissions, resting.  Michael wasn't letting up, and was uncharacteristically clingy - at 10 years old he was mostly beyond that stage, even in illness.  He suddenly seized and arrested.  My dad resuscitated him and yelled for my sister to call 911 between breaths.  The ambulance came and took him to the ICU.  He was diagnosed with Varicella - the chicken pox virus.  Rather than break out in spots all over his body, like it had with my sister and I, it had sneaked into his brain and created swelling that caused the seizures, arrest, and coma.

Michael looked so vulnerable with all the tubes, and angelic, like he was sleeping.  I felt horribly helpless.  We were told that he would be given supportive care until he came out of the coma.  If he came out of the coma.  There were no guarantees that he would, and if he did, we had no idea what damage his brain might sustain.  At a certain point, medicine becomes a giant guessing game.  We were there.

As I sat with Michael I thought of all the times my sister and I persecuted him, and felt guilty.  When he was three, he had this cute habit of stuttering as he was learning to talk and often shrugged up his shoulders when he walked.  We called him stuttering Frankenstein, and teased him lovingly (most of the time).  My sister, who was much more mischievous than I, used to hide tape recorded conversations of herself pretending to be his stuffed animals under his bed.  She sneaked under and pushed play to freak him out at night.  We dressed him up in girl's clothes for fun and fed him Tobasco sauce, promising him it was ketchup, just to witness his reaction.  

I silently prayed to the idea of God that I had at the time.  I had rejected the punishing, judgmental God I had come to know through my childhood organized religion, and was then entertaining the vague notion of an pantheistic God, one that could best be experienced through actions and nature.  I was optimistic that I might get to know and expand my idea of this God better through Buddhism and Wiccan classes at Hendrix.  I made fear-induced promises to this God, ones that are easily forgotten when danger has passed.

I turned to Michael and resolved not to get all emotional.  I tried to model my Dad's behavior earlier in the day - fully present, calm, rational, and optimistic.  I refused to entertain any other possibility than the one that Michael would wake up shortly, and speak to me like nothing had happened.  I opened a Nintendo magazine.  I remembered the last time I talked to Michael he had been talking excitedly about SimAnt.  There was an article on SimCity, something new coming out.  I read it and the entire magazine, interspersing each sentence with my own thoughts and unanswered questions, attempting to entertain him, and willing his safe return to our family with every molecule of my being.

When Michael came out of his coma, a couple of days later, one of the first questions that he was asked was "Do you remember anything?  From when you were in the coma?"  He replied with a sigh, "All I remember was Liz going on and on about SimAnt, and SimCity.  She was really loud."  That is definitely up there as one of the proudest moments of my life.  Annoying my little brother in his coma.  Maybe I was so annoying I drove the virus right outta his brain.  As for his brain function, he kicked my ass on the S.A.T.'s.  

While Crohn's has repeatedly attempted to de-rail my little brother, it has not succeeded.  He won a Barry Thomas art show in elementary school.  He published a recipe in high school.  He is one of the smartest computer people I know (but he doesn't know mac - I am trying to get ahead of him there - no laughing allowed - I am putting together an awesome slide show for the rehearsal dinner).  I attended his graduation from the fabulous ancient monastery renovated for state of the art cooking - The Culinary Institute of America in Hyde Park, NY - the Hogwarts of the cooking world, according to my mom (it is certainly magical, has gargoyles, and fabulous food - a wonderful trio).  He finished his masters in food science at Cornell and is pursuing his Ph.D. there now, studying the coolest molecule on the planet - capsaicin - a metabolite of chili peppers that activates the same pain pathway as tarantula venom.  It gives spice and heat to food, causing a pain-induced endorphin release that creates a pleasurable sensation.  No wonder my food drawer at work is full of red peppers.  He's a great brother-in-law, and a wonderful uncle.  An inspiration, and a hero.  Next week, he'll be a husband.

Michael is marrying a very cool chick - a sensory scientist he met at Cornell.  I had never heard of a sensory scientist, until I met Effie.  I love to say it - sensory scientist - it evokes mystery and excitement.  And I have learned that she does mysterious and exciting things, most of which are top secret.  I learned a little, but I have been sworn to secrecy, and if I told you, I would have to kill you (tee hee).  She and Michael are among the tiny handful of my faithful readers.  They have been engaged 2.5 years, a period of time that has tested the very limits of my daughter's ability to wait to be a flower girl.  Next week, she finally will get to perform in sparkly shoes and a beautiful dress with a hot pink bow.

One day shortly after Christmas one of the all-day assistants pulled me aside, and whispered excitedly, "Who was that really hot guy who picked up Sicily last week?"  If you have ever been to all-day at my kids school, you would know that there is an over-abundance of incredibly beautiful 20-somethings that work there.  This was one of them.  I told her it was my brother.  "That's YOUR brother?  Wow!  How old is he?  Is he dating anyone??"  I replied apologetically, "Yeah, he's engaged to be married."  She sighed, "That figures.  The good ones are always taken."



Anonymous said...

what an amazing story! you had my eyes misty!!

christie said...

What a nice story! Congrats to Michael on the matrimony thing. While you were spelunking, I was missing my sister's wedding. I went on the lame-o trip to Tulsa and have always regretted missing the wedding. Of course, maybe I wouldn't regret that so much if I had missed it for something less pathetic than a visit to the campus of Oral Roberts and the Tulsa Zoo!