It’s glorious to be home.  Springtime in the Rockies, complete with a running brook in the backyard, thawed and muddy trails up the hill, and daffodils emerging in the gardens, renders any problem as ephemeral as melting snow.  Today I don’t think my brain is damaged after all.  Today I am eating French toast and putting early Joni Mitchell on the turntable.  Today Kaisha and I went up to the Mesa Trail and hiked for an hour under a cloudless sky.  Today I took a delicious nap and watched reality TV with Marcus.  Today I lay in the afternoon sun with my two hedonistic felines.  Today I cooked roast chicken in white wine and ate it with my wife and son.  Today I am writing these words in my own cozy study, in my own cozy house.  Today I am home, happy, and through with feeling the fraught future of my condition.  It will come, of course.  It will take whatever course it takes.  But I will remain in this blessed life, among my loving family, pets, trails, trees, work, writing, films, books, music, self.   Of course some things will be lost.  Life is loss, and gain.  I am ready to re-focus on the gain, not the least of which is that I feel deeply cared for, and in very good hands.

Dawn.  I awoke at 5, in tears that somehow would not stop.  Last night Danielle put me back on my regular meds, along with something to make me sleep; and the onrush of side-effects, combined with the emotional experience of being here, under continuous monitoring of brain, heart, physical movement, speech, and sound, is unexpectedly profound.  The word that comes to mind is “umbilical”.  At first it is incredibly invasive to have not just your physical person but also your inner functions continuously under view, like the total-surveillance “panopticon” device that Michel Foucault conjured up in “Discipline and Punish”.  But after a while, you just give into the fact that you have literally no privacy at all, either externally or internally.  And then the surveillance becomes almost motherly, with all the nursing care and worry over your every movement and need.  The bed breathes with you like some kind of womb, and you have to contend constantly with the cord connecting you to the electronic mother behind the wall.  If I stayed here much longer, I would become an overgrown fetus!

10 a.m.  This morning, when it came time to disconnect, after my wave of sadness and gratitude for all of the tender care I have received, I itched with impatience to get the electrodes off, unhook the EKG, comb the glue out of my hair, and remove the IV shunt (this last they won’t do until I am finally discharged).  It was not just to get the friggin’ wires off my body.  It was also to reclaim my individual self, to climb back to adulthood.  I’m still in pyjamas and slippers, waiting for them to wheel my off to my final examination: a repetition of the MRI I had last summer.  It will determine whether my epilepsy is “clean” or “lesional”, a further narrowing of categories into which to corral the emus of my brain.  Smaller boxes, clearer choices.  But given my weariness, I am not thinking about further diagnosis — only the MRI is the last thing standing between me and sunlight.

5:30 p.m.  The wait for the MRI, the scan itself, and the further wait for Danielle to explain the results, takes the remainder of the day.  When I am in trial, I often oblige witnesses to wait outside the courtroom for hours on end, sitting on a hard wooden bench in a corridor, because the unpredictability of the process makes it impossible to know exactly, or even approximately, when they will be called to testify.  So I have no issue with the fact that mine is the least valuable time in the geometry of the day.  The hospital staff and MRI team are dealing with patients sicker, and priorities more urgent, than I.  So I doze, pack, read, chat with the nurses, do laps around the floor in my re-assumed street clothes (Lili, my Ukrainian day nurse, exclaims “You don’t look like a patient anymore!”) and practice having no expectations.  After yesterday’s positive result, I consider the MRI almost a footnote, albeit a long, noisy one.

Danielle arrives at the end of the day, cheerful as usual.  “Do you want to see the scans? They took a lot.”  She knows I’ve been reading on medical sites which are mostly over my head, so she takes me on a show-and-tell tour of the different views of my brain.  There are multicolored slides that morph as she slides the mouse, and others that look like static Rorschach splatters.  Then she stops on a greyscale view and announces, “So here’s the one thing.  This is the hippocampus.   Do you see the two sides?”

“Yeah.”

“Well, it’s not at all clear, and I just got off the phone with the radiologist.  I guess I’ve developed a reputation for being persistent.  But there may be a difference between the left and the right side.  Do you see — the left may be just a little bit smaller?”

I did.  “So what would that mean?”

“Well, again, it’s a maybe.  The radiologist didn’t see it at all the first time he looked, so then when I pressed him, he looked again and thought it’s possible.  We’re going to review it in a couple of weeks at our next case conference, to see what other people think.  But if it is – then —  hippocampal sclerosis.”

Yesterday, when we were talking about my seizures and where the focal point was, I had mentioned reading an article on hippocampal sclerosis, a progressive loss of cells in the hippocampus, the site of long-term memory storage in the brain.  In trying to prove to Danielle that I was not a reflexive gloom-and-doomer, I had said, “I read that article, and I decided, that’s probably not me.”  At the time, she agreed.  Now, she looked at me with a new seriousness, lips pursed.  I asked, “So, do the treatment options change?”

She nodded and thought for a moment.  “Well if it’s not hippocampal sclerosis, then no.  But if it is, then we probably need to look at other options.  We’ll see in a couple of weeks.  Let’s not get ahead of ourselves.”

“Absolutely.  I won’t go re-reading that article.”   Yeah, right.

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.