It’s been just over a year since the seizure that led to my epilepsy diagnosis.  About a month ago, I had an MRI showing that previous signs of possible hippocampal damage have gone away.  My seizures have gotten ever milder and less frequent.  The new carnivorous diet has helped – I feel vital, have lost nearly 15 pounds, and find that paying attention to what I eat is just another form of paying attention in general.

Perhaps this is what management of a chronic health condition looks like.  Actual symptoms may abate along a steady continuum, but then abruptly pop back in like some irritating uncle who never thinks to call ahead.  Still, you reach a psychological inflection point.  You stop thinking of yourself as “sick” and start feeling “well.”  I passed this mark about three weeks ago, and I’ve felt a quiet ebullience ever since.

Also, I find my field of vision is shifting.  Instead of a relentless, near-field focus on the NOW, I’ve lifted my head.  I’m noticing the long cycles of change around me.  When we moved into this neighborhood eighteen years ago, Marcus was an infant.  Most of our neighbors had older kids, were retired or elderly.  Now, Marcus is off to college; Paige is spending the summer here, but as a young adult.  Some beloved next-door neighbors also moved out recently, their daughter long-fledged, the house and yard too big for their needs.  A young professional couple has moved in, with two tow-headed rascals who daily remind me that a squeal of joy needs only a split second to become a howl of protest.  The boys love to play in the creek that runs through our backyards, the one that Paige and Marcus played in as toddlers, the same one that flooded and destroyed our landscaping in 2013, and that I am finally feeling well enough to rebuild.  I’m replanting mostly with the perennials that survived, outcompeted the weeds, and bloomed on their own: iris, spiria, poppy, yarrow, lime grass, sage.  I’m building retaining walls where the water swept in, using big rocks from a nearby house slated for demolition (the friendly new owners told me I could help myself).  I wonder whether previous generations of neighbors shared or traded these same rocks.  I greet young couples on the sidewalk, watch them coo over babies or “starter” pets.  I wonder how many times this neighborhood has cycled, from young to old and back again.  I know the creek will outlast us all.

People sometimes describe adverse events in their lives as “gifts.”  It’s a rather fraught idea.  If you suggest to another person that their adversity is a “gift,” you’re likely to get feedback resembling a punch in the mouth.  If you say it about yourself, you risk sounding like some spiritualist  poseur.    But when I look back over this year, the word “gift” does come to mind. Here’s what I mean by it.  Certain experiences are deep enough to change you in essential ways.  If you are regain balance, it is a new balance.  If you regain sight, it is a new sight.  If you regain love, it is a new love.  So in that sense, life-altering adversity gives you the “gift” of a new life.  For me, epilepsy has prompted me to change my career, my diet, my sleep and my self-care.  It has given me an excuse and compulsion to write these posts, and to receive an abundance of love, support and commentary from you in return.  It has changed how I pay attention to my mind, and to my world.   If those aren’t gifts, then I don’t know what is.

The seizure monkey found another hole last night.

One reason I write these posts is to understand and express what epilepsy has taught me in the last year.  I notice that most of them are written from a place of wellness.  The truth is I feel perfectly well most of the time.   My entries advert to the illness; they don’t enter its shadow.  But last night’s seizure reminded me that I’ve learned a good deal from the “illness” part of experience as well. So, with fair warning to those who want to stop reading now, here’s some of what I’ve learned.

My epilepsy produces a strange form of on/off suffering. Seizures occur suddenly, and (in my case) mostly without any warning.  I can be writing to a friend, or talking to someone at a party, describing how well I feel and how the current diet/medication combo seems to be working out great – and before I finish the sentence, a seizure hits.  If it’s mild, it lasts five seconds.  Some of them I can simply push through and continue what I am doing.  The person at the party will notice my speech falter, and perhaps see me take hold of a chair back to steady myself.  But if I don’t feel like talking about it I will just carry on, and the other person may not notice.  I feel instantly lousy, as if badly hung-over.  But really it’s no worse than a migraine, or cramps, or any number of ailments plenty of us experience during the course of a day.   We all learn to push through feeling intermittently gross, and my milder seizures are just a variation on that theme.  If the seizure is not-so-mild, I have to sit or lie down and see how bad it gets, and then I have to spend time recovering once it’s over.  The hangover is worse as well – not something you can just push through.  A day later, though, I feel better.  I’ve only had one “grand-mal” seizure involving unconsciousness and convulsions.

If that were the extent of the problem, my epilepsy would perhaps not be a life-altering condition.   I would minimize the seizures as best I could, tolerate those that remain, and get on with my life.  But there’s a third time dimension beyond the on/off light switch of daily experience: the long-term consequences of uncontrolled seizures.  They are just not good for you, creating tiny, incremental amounts of damage to the hippocampus, a small nodule of the temporal lobe where the brain stores working short-term memory.  When I had my last MRI, my right hippocampus showed a slight “hyperintensity” — like a little bruise.  It may go away, if the seizures can be made to stop.  If they continue, it may get worse.  There’s a lovely term for the long-term degenerative process: “hippocampal sclerosis.”

Living in these three time dimensions creates an ongoing contest with a tiny monkey in my head.  I take pills, reduce stress, increase sleep, alter diet, to keep the seizure monkey from getting at my brain.  Each change works for a while.  But so far, the seizure monkey has eventually been able to find a little hole to get through – and once he does, he uses that path again, and again.   So I try something new, which slows him down for a while — until he finds a new hole.

When I seize, I think of the monkey hitting that bruised spot on my hippocampus with his little fist.  Along with its physical sensations, each seizure triggers a multiple-choice test.  Question 1: Are the moments of forgetfulness, the word-retrieval and name-recall glitches, the find-myself-in-the-kitchen-wondering-why-the-hell-I-went-there feelings, a result of: (a) side effects of the drugs I’m on; (b) normal middle age; (c) the cumulative effect of seizure; or (d) my overactive imagination?  Explain your answer.  Question 2: Repeat Question 1 on the following day.

One effect of this constant prospect of sudden sickness, and the threat of long-term decline — is an enforced discipline to experience each moment of wellness acutely, happily, even joyfully.  It’s not just carpe diem.  It’s carpe segundem.  When I’ve written these posts, I’ve often tried to capture that precious enjoyment of my sharpened moments of wellness.