Senin, 27 Juni 2011


When I was a kid, my dad used to tell me Bobo and Floppy stories.  Bobo was a stuffed teddy bear and Floppy was his more practical, stuffed canine sidekick.  I always looked forward to a short goodnight story that included Bobo’s shenanigans and Floppy’s solutions.  There must have been a time when both Bobo and Floppy were new, properly stuffed, fuzzy and soft animals, but in my memory they looked much like one of Izzy’s chew toys (except I never ate the stuffing out of my stuffed animals.  Though I did, supposedly, chew off Bobo’s nose). 

Fast-forward two and a half decades.  I spent Monday, Tuesday and Wednesday of this past week at my home-away-from-home, Johns Hopkins Hospital.  It was a planned admission and, as such, was only slightly more organized than a late-night trip to the ER.  Though I was scheduled for admission at noon there were no rooms available, so I spent five hours in the Clinical Holding Unit before I was finally assigned to Meyer 927A.  In Meyer, I paid $10 for access to the room’s 20-year-old TV and settled in for a night of mindless Monday night television.  Right as my favorite show started, “transport” showed up to take me for a late-evening, surprise MRI.  Not a big deal, I figured I’d actually save a few brain cells by missing the Bachelorette, but I secretly wished I hadn’t wasted my $10 on an evening that would now consist of the inside of a tomb-like tube that sounded like the construction site outside of my apartment. 

As soon as they slipped the plastic “cage” over my head to ensure my head remained immobilized, they slid me into the tube where I was initially relieved to find that a mirror above my eyes reflected an image of the other room.   And though I was initially comforted to see it, it soon unhinged me in a way I never predicted: above my feet, perched at the foot of the MRI table, was a stuffed teddy bear that looked exactly like Bobo.  Agitated as I typically feel before an MRI, I attempted to calm myself down, and pass the time by creating a new Bobo and Floppy story.  This was a good idea for about 4.3 seconds.  The story involved Bobo inheriting a superpower that enabled him to leave behind all circumstances that made him uncomfortable or scared, and as I was telling myself the story I realized I was telling the story to a small child.  Not to just any small child, but to my own small child.  All of a sudden, I felt the walls of the MRI close in on me.

As this disease has progressed, I’ve lost things slowly, over the course of almost fourteen years.  All of these things have been physical though, and while the disappointment has seemed occasionally oppressive, and has required significant modifications to my lifestyle, it is physical.  As limitations accumulate, so do my needs: a person helps me get changed, my wheelchair helps me navigate my apartment, my giant mini-van helps me get to and from school, etc.  But the common denominator, as the numerator in the fraction slips closer to one, is who I am – not what I do (or don’t do as the case may be), who I am. 

As someone who spends a lot of time in her own head, I know what that means – probably better than I should.  I know that at my core I am hopeful.  I am hopeful that disease or not, I will share my life with a family.  A family that includes children.  And since I have no conscious aversion to adoption, when I agreed to try chemotherapy I didn’t give my fertility a second thought.  Which is why, when I found myself shallowly gasping for air and swallowing my own tears in the MRI tube as a result of a Bobo and Floppy story, I was – amidst other emotions – confused.

And that was just the beginning.  For two straight days I listened to and signed informed consents that consented to – among other things – the possible side effect of sterility.  I cried after every signature, but it wasn’t until I was halfway through the chemo that night that I figured out why.  This wasn’t physical loss.  As such, there was no amount of help that I could enlist to deal with it.  This was a loss that reached deeper than I can articulate.  Loss is usually characterized by something being taken away, but this loss included addition: it was the addition of a gaping black hole to my already hurting heart.  Because suddenly this disease had me in its grasp.  It had my hope.

I am sure that I am not the only person in the world who, at one point, is confronted with the realization that there is a major disconnect between the life you want versus the one you have.  But last week, in the cold confines of an MRI tube, I sure felt like I was.   And Bobo, as unassuming as ever, was impotent to help.

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