“It has been four years since my last confession...”

(Those of us who were raised Catholic may appreciate that HaHa)
I hadn’t planned to add to this blog, but I am making any and all efforts to connect with others who might share my current goal to locate or develop a shared housing model for my 22 year old Cesare.  I am stubbornly not a social media participant, but hope through connections with you, and on the Epilepsy website, I might find other parents or young adults who might be interested in a a similar idea.

Cesare is all grown up now!  In the intervening years since I last posted, Ces did receive the RNS implant and it has significantly improved his seizure frequency and intensity.  The docs at NYU acquiesced because Cesare had his first status epilepticus in 2017 that rocked our world.  They were kindly willing to try anything at that point.  Still bright and conversant, Ces continues to need close monitoring, especially at night, where he has had more than one emergent episode in the last six months.

I’m retiring in a year and a half and Cesare’s future has never been more in focus for me.  Cesare cannot live alone; in addition to break through seizures his processing and judgement continue to be impaired by a bucket of meds each day- and of course, whatever damage epilepsy has done to him.
Homes for the developmentally disabled may not offer him a similar peer group, but most importantly there is no mechanism for 24 hour medical monitoring.  Believe me, I’ve checked.  Even in Assisted Living, which is really not for the young, two hour wellness checks seem to be the norm.

My dream housing for Ces would be a home with four or so bedrooms, communal living and dining and a central monitoring hub staffed at night with a rotating roster of parents, family members or hirees who would have access to each resident through video observation or pulse-oximeter monitoring- whatever is needed.  During the day, our kids would hopefully have supported employment, or activities of their own choosing.  Perhaps a support family member, or other would be available each day to assist if necessary.  Perhaps there is a fifth bedroom and a support person loves there permanently, or takes a week per month.

My dream, dream housing for Ces would accommodate MY dream housing and sit within spittin’ distance of a beach, have easy access to public transportation and urban activities and services unknown to us in rural New York- and NO SNOW or ice to decrease my risk of falling and stuff now that I’m, officially, “aging”.  San Diego?

I’ve read many anxious posts from parents and young adults pondering this same dilemma.  I hope there are enough of us out there to create a living space that will endure for our loved ones.

Reckoning

I don't know if there is a way to write about one's pain without seeming to invite sympathy.  I've been writing this blog for a year and in that time I've shared the experience of jumping hurdles and I've written about stumbling.   Many of you have generously written back.  When I am sorrowful, however,  I have a difficult time writing.  I don't want to be a victim, or sound like a victim.  I don't want sympathy.  I don't want to be that person.  It is one reason I write here thinly anonymously: I want to purge without being identifiable.  As I read back through the last year of my blog entries I grow weary listening to this mother who writes of nothing but epilepsy and its choke hold.

I'm a memoir junkie.  I've read dozens and dozens of stories of struggle.  Jeanette Walls, Augusten Burroughs, Mary Karr, Tobias Wolf, Charles Blow, Ishamael Baeh.  In Left to Tell, Immaculee Ilibagiza writes of being hidden for ninety one days in a bathroom with seven other women to survive the Hutu's machetes in Rwanda.  Martin Pistorius, in Ghost Boy, describes being locked in his body but fully conscious, dismissed by doctors as terminal and unreachable.  Amanda Lindhout endured 460 days held captive in Somalia.  I have no patience for the melodramatic writer.  A clean dispassionate yet earnest account is what keeps me glued to the pages.  Not all of the authors have "triumphed": some are slightly broken living slightly off-kilter lives.

I am not those writers.  I haven't lived a life of abuse.  I haven't been buried in my brain or underground or hid from terrorists.  I feel as though after a year of writing about epilepsy, I should be moving on.  Coping, surviving or whatever it is that people do when they resist sliding into a hole.  More than driving a truck through our lives, these pages seem to reveal lives seated firmly in the truck.  We occupy all of the available spaces but for the driver's seat where epilepsy is obtrusively maneuvering our course.  I feel like epilepsy owns me, or at least a controlling share of me.

I haven't written in a few months.  I've been in a dark place.  Cesare hit another rough patch.  I hit his seizures with everything we had.  I drained our emergency supply of midazolam and slept with one hand on Cesare's chest.  He ended up back in the hospital.  They added a fourth anti-epileptic drug and a VNS.  And though he is now more stable, I was drained.  I felt like a victim and knew I'd sound like one if I wrote.

I've not completely shaken this feeling.  I too often feel sorry for myself though I know I shouldn't or certainly shouldn't admit to it.  Of course the irony is that I don't have epilepsy.  I am healthy and privileged in many ways.   I am, however,  entangled in caregiver-itis and parent-itis.  It's too blurry where I sit right now: where Cesare begins and I end.

Thank you, Beth and Paola, for reaching out recently and for being supportive and kind listeners.  I hope to keep wrtiting but I want to write of more than epilepsy.  I want to drain its power and find a way to distance myself from this persona.  Perhaps I need a new blog for that.

Postictal

The postictal phase of a seizure is the period of recovery after the electrical event has ended.  I've never had a seizure, but I feel like I'm in the postictal phase of one now.

Cesare's case went before the surgical board at NYU.  They considered his candidacy for the RNS implant.  They said no.  The build up, let's call it an aura, lasted about five months and included a smorgasbord of tests: VEEG, MEG, neurophychological, MRI.  The event itself was simply a brief email.  For a moment, I lost my breath and couldn't hear anything around me.

The after effects of a seizure can include "both psychiatric and cognitive symptoms".  I have both.  I feel angry and I think I could wail on someone.  This isn't a rational anger.  The surgical team did not "set up" my son, nor did they come by this decision casually.  But postictal behavior isn't rational.  Or is it?

I just want treatment: every last established or experimental treatment that exists.  Anywhere.  That's all any of us want.  The inequity of the CBD oil phenomenon, for example, is cruel.  Those of us outside the small windows of places like Colorado Springs are like empty pocketed children who may only put our noses to the glass and wish we were allowed in to the sweet shoppe.  Today I read three articles about parents whose unimaginable loss could conceivably have been prevented with access to CBD oil for their children with epilepsy.

I understand controlled studies.  I understand risk analysis.  But I'm a parent and you probably are too.  That supercedes patience and tolerence for regulated health care.  Shirley...

Perhaps a different but no less exacting role is the epilepsy doc or surgeon who has to say "no".  Hundreds of patients and managed medicine that demands docs squeeze caring into just minutes for each appointment.  An inbox that's never empty.  Failed treatments.  Patients who succomb.  Two of Cesare's docs over the years left their jobs because it was just too much: one I still miss, the other had no heart.  But those that see it through are quite simply remarkable.  The doc who perfomed numerous surgeries on Cesare, and is responsible for eliminating Ces' most severe seizures, still rides his white horse into the operating room at NYU after 25 years in practice..even though he declined to mount-up this time.

I'm sure with time I'll shake off the impulse to smash something or to picket the hospital and I'll allow rational thought to reign.

What comes after the postictal phase?  Life.

Separation Anxiety

As I am writing this post I need to stop every few minutes to comfort Ces who is lying next to me.  He's in day three of completely unexplained batches of seizures: as many as ten back to back more than once in a day.  I've already administered  Ativan to calm his system...but he keeps rolling- 30 to 40 seconds each time.  He freezes, gasps, trembles, sighs, and then says, "over".  Last weekend he seized sitting in the bathroom and tumbled into the vanity lacerating his scalp pretty colorfully.  He is scheduled to have the staples removed this afternoon.

And each one of these suckers, as they always have, start with a fear aura.  What must that be like?  Undefined terror grips Cesare that can't be explained, and can't be quelled with any of the conventions the rest of us use to confront our fears: a light in the dark, or safety in numbers.

Cesare has already topped out each of his anti-epileptic drugs.  There is nothing left to increase, and virtually nothing on the market he hasn't tried.  His safety intervention med is a nasal spray, called Medazolam, which has thus far proved worthless.  So I pile on the Ativan which makes him sleepy and dopey.  (He's just had his eleventh seizure and I've just handed him his second Ativan).

The last time this strange cycle occurred was early November.  After increasing his Fycompa, his old pattern returned: averaging two or three seizures daily, usually around bedtime.  (My apologies, Fycompa, to anything I have said in the past about your potential side effects that may have offended you).

With the confidence that that strange anomaly had passed and with the advent of the new year we spent some of our Winter Holiday moving me out of Cesare's bedroom.  New paint, some new furniture and the plan to order a nifty kind of new pulse-ox that is worn like a wrist watch.

This has been a difficult move for me... a whole different kind of letting go from the tearful goodbye I had just said to Griffin in the fall as he headed for college.  And wouldn't you know, Griffin leaves this afternoon to return to college after a month home.  Two very different kinds of separation.  Two very different kinds of anxiety.  I am preoccupied with both.

Last week, Griffin engineered making good on a challenge he had with his brother: when they turned 18 they would get tattoos.  They agreed on the Celtic symbol for Brother.  They are both quite proud of themselves, and I am quite teary.

Cesare is gearing up for his own loss as his twin packs up to leave today.  We've talked about coping and what forms that can take.  Cesare says he needs to wipe Griffin from his memory to make the transition.   He told me yesterday that he wouldn't be wearing T-shirts for a while.  He wants long sleeves to cover up the symbol that represents what he will soon be without.

Cesare has stopped seizing now, and we'll go on with our day.  Tonight, I'll be in my bed with my ear close to the baby monitor and wishing I had a life line to Griff as well.  Cesare will close a door in his mind that keeps his longing for his brother just a little further than arm's distance away.

Thanksgiving, again

Not five days after my last post about my dad, he had a stroke.  I bulleted down to Florida and was in the Neurology ICU before that day's end.  Shortly after the stroke, before I boarded my flight,  my sister put the phone to my dad's ear.  He told me he loved me and cried.

Luck, or divine Intervention or both has my dad back to normal and at home in his bed, and I in mine, tonight just three days after he said goodbye to me.  My sister, a nurse, just happened to be standing near my dad when she saw that he was acting oddly...she called 911 within the first minute...the ambulance arrived and transported him to the hospital within the next 15 minutes.  The stroke intervention, TPA, must be administered within 35 minutes of the event.  He got it within that window.  TPA only works on 50% of clots and it worked on his.  

My dad is extraordinarily lucky and we are immeasurably grateful.  We love you Popi.

                                     

Thanks to Popi

My Dad flew up from Florida to join us for Thanksgiving.  I am grateful that my dad was here with us.  He is unflappably positive and the role model for all of us about how to love.  My husband is fond of saying that when he grows up he wants to be just like Popi.

Popi and Cesare have a special bond.  Popi and Cesare are exceedingly silly, for one.  This is one of my favorite shots that capture my dad the muse/photographer and Cesare the protégé.:

Ces and Popi had some nice moments together last week.  I worry that each will be our last.  

Growing Pains

Such slippery territory is this young adult phase in my son's life.   Newly 18 and a six month post graduate from high school,  my son needs to learn to shape his own life.  Thus far the shape he has chosen is sitting cross legged in front of the XBOX.  Cesare does work three afternoons a week interning in a local manufacturing plant.  I am proud of him for sticking with this, even on days he doesn't especially want to go.   His paychecks acrue in the checking account I helped him open a few weeks ago.  He doesn't spend his savings: he wants for nothing...except to play his video games.

And so I, as I find many parents do, ask myself how much is too much?  If left to his own choices Cesare will play 10 hours of video games without so much as a pause.  I think any reasonable person would agree that this is excessive.  Why?  Because, as experts in the UK, Australia, the US and many other countries will enthusiastically tell us excessive gaming is bad for children.  It interferes with their social lives, and their school work.  It can lead to health problems..obesity and, in surprisingly not rare cases, blood clots resulting in death!

But for my son, as for so many of the young men I work with at my Alternative High School, this is their opiate.  And this is their platform for social connections.  This is the arena in which they excel.  This is the one arena that is manageable and utterly under their control.  I've read articles written by mothers of sons with Aspergers who feel that the XBOX (and XBOX Live) has given their child social connections that are free of judgement and in which their sons can feel competent.

The amount of time that my son spends playing games on his XBOX is worrying me.  It isn't the shear uninterrupted hours that is the most concerning, it is that there seems to be so little else in his life that draws his interest. It doesn't take the therapist in me to suspect depression, any parent can see when their child is withdrawing from life.  My concerns about how Cesare spends his time is rolled up in equally wavy territory concerning his newly emerging status as an adult.  Just weeks into this eighteen year old variety of adulthood, I have curbed, considerably, the number of edicts I hand out.  I make "suggestions" and I express "concerns".  Just a mere six months ago my 17 year old twins lived by rules that included small doses of XBOX in order to make room for homework, chores and life.  That's not so easy now.  And it shouldn't be.  Disability or not, Cesare must begin to make decisions for himself.  

And so I've been tip toeing around him a bit this week looking for an opportunity to bring him into a meaningful conversation about how he spends his time and his life in general. No small undertaking.  

I decided that this conversation could wait no more.  He had a good day at his part time job, he was freshly showered (under duress) and seemed amenable to an interruption in his game play.  

My brilliant and sensitive son patiently explained to me that he feels the need to find ways to deal  with his life.  "It's my coping mechanism, Mom."  Coping with epilepsy, I asked?  "No" he says emphatically, "I don't have to cope with something that has always been there and will always be there.  I've never known anything else."  It is his brother's absence that causes him such grief, he said.  Griffin had just returned to college the day before and won't be home for another three weeks for the Winter Break.   "It's like watching a conveyor belt going by in front of me.  And it's always empty.  But then suddenly someone puts a big pile of candy on the belt, that I'm not allowed to touch." (Referring to his anticipated return of Griff)  It just keeps sliding by in front of me, and since I can't touch it I have to distract myself...I can't think about it."  Ces is teary now, talking about his candy-brother.

Cesare rarely talks about his feelings and I foolishly had no idea he missed his twin so much.  But, of course I should have.  But I read more into what he's telling me.  I read that he is also mourning the emptiness of his "conveyor belt".  How vividly dark that seems to me.  The imagery also reminds me of life literally passing him by.

I've written in the past about offering whatever opportunities for fun and social engagement I can think of in this semi-rural town in which we live.  Cesare has declined each offer.

I don't think this state of mind, or state of life,  is endemic to only those with epilepsy.  I know that many young people don't see the world before them as laid on a silver platter.  I think too many see a conveyor belt squeaking by them as empty as Cesare's.  What these images have in common, though, is a world view where life and all of its opportunities come to you.  Perhaps these views also have a parent behind the curtain who is guilty of cranking the conveyor belt out before their differently-abled child filled with arranged playdates, arts and crafts offerings, hot and cold running meals, and activities for sunny Sundays.

My wish for Ces is to see opportunities as waiting for him to come and get them.  He'll have to venture out into territory that isn't comfortable or familiar to him.  I think it's called growing up.  [We] parents have a shift coming too.  To support but not enable.  To point them in the right direction, but then get out of the way.  Wow.  Is that easier said than done.