My feeling this morning is that I am a piece of shit.  A worthless imposter.   Unworthy of all of the contraptions around me, unequal to the grand scale of medical catastrophe that this hospital is set up for.  My events may not merit a squiggle on the register of truth that sits behind the wall.  Does my suffering measure?  Does it have heft?  Can it be verified?  Can it be tasted?  Is it true?

I realize that this sense of unworthiness triggers feelings going way back in time.   For 25 years I have lived with the fact that there is no way to “prove” that I was raped at age 5.  I repressed the memory of it until age 30.  The perpetrator has disappeared like a ghost.  The only validation I have is my own knowledge of what took place, and my own experience of how the recovery of that memory forever changed the course of my life.  Yet I know that memory is malleable, subject to suggestion, fragile in its ability to record.  And when I tell my story – now one of the cornerstone truths of my life — to anyone who is not an immediate family member, a trusted friend, or a therapist paid to work with me, I am met with a gaze of polite but poorly-concealed skepticism.  I watch my listener wonder: how does he KNOW, really?   I know, at the end of the day, because of my stubborn, uncorroborated, lonely belief in myself.

So now I sit in this hydraulically-controlled mattress in a hospital room of the Epilepsy Monitoring Unit.  This ward is only three months old, and I am surrounded by the latest technology.  As chambers of bedsore-preventing air shift under me, cradling and rocking my drug-withdrawal-fogged my sense of reality, I wonder: will my worlds ever collide?  Am I waiting for science to prove that I am actually sick, or is this experience of suffering yet another a phantom of the night, unverifiable, looked upon by the medical world with polite and enforced patience?  When does my reality meet ITS reality?  Will I ever find a unifying reality that explains either of my experiences and validates them in any way?

I am a lawyer, and in the paradigm of the law evidence is presented, facts are found, preponderances are weighed.  Speculation is disallowed.   Today I am subject to a realm where phenomena are observed, specimens collected, tests are conducted, data are measured.  I am monitored in both head and heart for an entire week.  25 electrodes are glued to my skull.  Each is connected by a thin, colored wire into a bundle that leads from the top of my head, like a manchu braid, down to a shoulder-slung bag.  Out of that bag protrudes a red button.  If I think I am “having an event,” I am supposed to press it.  Doing so triggers two things.  Most immediately, three nurses or other staff receive an alarm and rush immediately into the room to perform a seizure protocol, which involves abruptly stripping the covers off my bed asking me questions and doing a quick exam.  Pushing the button also “marks” the moment for my neurologist to examine, out of the reams of chaotic data she is receiving on my waking and sleeping experience, a pinpointed spot to determine whether there are any out-of-phase patterns to be identified on the EEG trace.  If I push the button at a time when the EEG is monitors are dancing, then we’ve bagged an emu.

A remarkable experience!  A week where literally all my major bodily functions are being written to disk, to be analyzed and digested.  When I blink.  When I shit.  When I cry.  When I stress over that fact that over three days I have not yet produced a seizure that will show up on the EEG, and that I have only one day left to do so.  At this moment, 9:58 a.m., Thursday, my pulse is 97, my EEG and EKG no doubt register my increasing agitation over the need seize in the next 24 hours, but I wonder how deeply these measures probe into my uncertainty, into my feelings of worthlessness.  I cannot know what is unknown, and I cannot obtain verification of that which neither science nor law can verify.  If an event is too remote to be established, then it remains for other realms, history, art, literature, philosophy, to take over.  These arts are beautiful instruments for the elucidation of suffering.  But what kind of suffering can science capture?  Will it capture mine?

Noon.  Last night I stayed up until 2:30 a.m., and I awoke at 7, to add more stress, and hopefully increase the odds, of an emu sighting.  I tried to further sweeten (or sour) the pot by imagining what this week in the EMU would cost, full retail, if my insurance didn’t have an out-of-pocket maximum.  The value of my kids’ college funds?  This morning, after writing my 9 a.m. entry above, I felt two successive waves of vertigo, about fifteen minutes apart, each arriving as if on a puff of air. I did push the red button, and the nurses stormed in and performed the seizure protocol.  I looked entirely well, and they treated me with cheerful, supportive skepticism, which is what I also felt.  I increasingly worry that this week will have been a wasted effort.

4 p.m.  No further “events” of any kind.  Beret and I have skyped with our daughter Paige, and idly passed the time waiting for Danielle, the neurologist, to arrive.  I suggest to Beret that one purpose of this week has been to “confirm the epilepsy diagnosis,” and technically we haven’t done that yet.  I wonder aloud if the diagnosis could be wrong after all.  Perhaps I can discontinue the drugs and see if the seizures have stopped entirely!   Perhaps my waves of vertigo are something else, not attached to epilepsy, exacerbated by the meds!  A condition without a driving restriction!  If it’s all in my head, then it could all get OUT of my head as well, especially if I got off all of these mind-altering pills!  This could be good!

5 p.m.  Danielle knocks and enters.  She brings the uplifting news that the morning’s little emus registered on the EEG, and that they appear to live in a neighborhood, if not at a precise address, in the metropolitan area of my brain!  She also presents new treatment options – a new drug we haven’t tried, and an implanted devise to stimulate my vagus nerve.  Without me asking the question, she looks at me and says, “You DO have epilepsy,” which makes me realize she’s probably been sitting in the monitoring room, looking over the EEG from this morning, and overhearing the audio of our conversation from the past hour.   But I’m past the point of caring that I have no privacy – I’m elated that my  “events” have jiggled the Richter scale.   I seize on the new drug, and the vagus nerve stimulator, as hopeful new paths.  At one point in the conversation, Danielle looks at me and says, “Well, you’re a glass half-empty kind of guy,” and I bristle.  I’m NOT, I think.  I’ve been through eight months of feeling like trash, not driving, reading dire articles with only limited access to medical advice, and now four nerve-wracking days in the EMU.  What I am, more than an intrinsic optimist or pessimist, is an anti-denialist.  I’m a feel-as-you-go-ist, and lately I have been passing through Depressive Valley on the Kubler-Ross Highway of Grief.  But if you’ve got a new road to show me, I’m ready to drive.  Give me your new drug, Danielle, and zap my vagus nerve.