The dreaded 2 a.m. phone call…

Yesterday afternoon, after being challenged by my cousin and a dear friend, I dumped a bucket of ice and water over myself for the ALS Ice Bucket Challenge.  My maternal grandmother, you see, succumbed to ALS when I was thirteen; her diagnosis, decline and death happened in the time it took for me to turn thirteen and being a month shy of turning fourteen.  The pall her illness cast over our lives was significant; those of us who had not heard of ALS before then suddenly got an education on the subject.  Dumping a bucket of ice and water over my head was uncomfortable, but it was nothing compared to what my grandmother faced in her final months.

Around the time that I was serving dinner, a sudden feeling of dread overwhelmed me.  If I tell you that I felt tremendously tired, weak and achy, you’d probably say “ah, the cold water!”  No, this was something else…  Because our family has been under the strain of ailing relatives with varying degrees of severity attached to their conditions, a feeling of dread has become par the course for us.  I ate dinner while thinking that I was being a tad melodramatic, and then I gave myself an earlier-than-usual bedtime to basically sit and relax…

We tossed and turned all night.  We were exhausted, but still we couldn’t manage to sleep and rest.  And then the phone rang…

My father in-law passed away in the small hours of the morning.  Even though we’d been expecting the news, it wasn’t easy to hear.  Yes, there is a degree of relief in knowing whatever physical suffering the loved one has been experiencing is done, but…

In the car, driving to buy a take-out dinner we didn’t want but felt compelled to eat because the next few weeks will be long and we need our strength, Dada and I were talking about the intricacies of the process of grieving.  I lost my beloved aunt 23 years ago, and Dada lost him mom sixteen years ago.  Although my parents are still alive, I do have an inkling of the grief that comes with losing a parent because my aunt was a mother to me.  Our conversation in the car turned on the many ways in which one feels totally gypped when a loved one dies.  There are many ways in which this can happen…

Waking up to a ringing phone with bad news on the other side is not fun.  It’s hard to go back to sleep after that, or -if you do- you will fall asleep when it’s about five minutes before the alarm goes off.  I don’t know if this is a law of Physics, or of any other science, but it should be.

We went through the motions of “morning” with the tiredness of sorrow, and we managed to successfully send J off to school without causing him any major anxiety.  School started on Monday and, because J decided so, our morning routine was trimmed down to getting dressed and getting out the door.  The same kid who used to relish our “I love your nose…I love your eye…I love your cheek…I love your ear…I love your other eye…” and so forth routine actually went from what usually preceded it to what usually followed it without stopping in the middle.  Although I loved the whole routine, and the giggles that it extracted from J, as well as the bone-crushing hug with which he said “I love you” when it was over, I accepted this as yet another passage in the mother/son relationship.

Ok, I pouted for a while, and maybe my eyes got misty, but I understand that we’ve moved on from another childhood ritual that J had no everyday need for anymore. As with everything in life, time gets called on habits, routines, even people’s lives, and we move on in spite of our sadness and apprehension.

Louis C.K. says “People are always asking what happens after you die. Lots of things happen after you die—they just don’t involve you. There’s a Super Bowl every year…A dog catching a frisbee …”  Death directly affects one person, and then it stops; once you’re dead, of course, your suffering, tribulations, happiness, sorrow, illnesses, tics, quirks, and so on and so forth, disappear…they’re done…they’re over.  This is not about whether there is a Heaven or not…it’s simply a statement of fact: all the worries of the world will fall off once your time as a living, breathing human is completed.

The rest of us, however, are left flailing like fish out of water.  When someone is taken out of our life permanently, we don’t exactly know how to breathe until we figure out how to function again.  It is not that we are left without a clue as to how to live, but rather that we are suddenly painfully, suddenly, shockingly aware that that person is gone, and that we are solely responsible for keeping them “alive” by hook or crook.  As we sat in traffic, Dada and I started enumerating the many ways in which we remember our respective mothers (his biological, mine blessedly voluntary.)  We both agreed that there is, even after such a long time, a gasp that comes attached to the oft-renewed realization that they are physically gone, and that we will never see them again except in the ways in which we can conjure them up through memory.  The most  heartbreaking expression I heard last night, when the lights were out and rain fell rather insistently on our balcony, was my husband’s voice laced with sorrow as he said “my parents are gone.”

There are things you cannot get back, and there are things that you will never lose unless your memory suffer a catastrophic failure.  I have learned, however, that in the throes of dementia there is, clear in my mother’s otherwise completely confused mind, the very keen presence of her long-dead mother.  The children, well, we’ve been watered down, reviewed to fit the picture she would have preferred, but her mother is there, intact and still vividly present.

The dreaded 2 a.m. phone calls throw US into chaos.  And, sadly, life IS about the endless possibility of getting one of those at any random time.  The more the call crushes you, the more you know the person it’s about was worth the pain, and -trust me- last night was heart wrenching on so many levels that the rest of our lives will be affected by that trilling sound in the middle of the night…


La commedia è finita!

My dad has never been a fan of Leoncavallo’s Pagliacci, but that didn’t mean we didn’t have to -from time to time- listen to recordings of it so we could augment our appreciation of opera.  Aside from “listening” and “reading the libretto,” we were sort of expected to gather a little information about what we were about to experience.  This bank of data comes in handy from time to time, say when I play Trivial Pursuit, watch Jeopardy!, or hear a reference that raises a flag of “booyah, I know this” in my mind.

This morning, while watching the incessant flow of news about Robin Williams’ death, James Lipton said “he WAS Pagliaccio!”  Not for the first time, I agreed with an assessment that placed Robin Williams firmly in the role of “the guy who makes us laugh because he can’t NOT do it…for his sake.”  Mr. Williams waltzed into my life in pretty much the same way he waltzed into the lives of multitudes of adolescent members of my generation: he was Mork; lovable, charming, klutzy, naive, wide-eyed…and hysterically funny.  The level of energy that Robin Williams managed to convey was so impressive that even my mother (who was convinced that, by rolling her eyes, she could maybe find an extra shred of patience in her parietal and frontal lobes to deal with my hyperactive demeanor) found HIM more exhausting than she found me.  Robin Williams was, from the very first moment we met him, larger than life, a force of nature, and a talent unlike any other.

How many of us sat, child in lap, watching Aladdin for the thirtieth time and still laughing at his dialogue as the Genie?  To this day, J wants me to try to sing Friend Like Me without having to catch my breath, slow down, or go over the rapid-fire lyrics because I’ve either forgotten a bit, or misplaced it in the flow of words.  He finds it entertaining when I break down laughing because a) I can’t get through it without feeling faint, and b) I can’t imitate Robin Williams’ delivery while laughing at how it sounds in the original.  TGG was familiar with Popeye, Hook, Flubber, Jumanji, Aladdin, Mrs. Doubtfire…even The Birdcage entertained him to no end, and he didn’t even really understand what it was all about.

We all knew, of course, that this mad comedic genius was partly fueled by his addiction for a good part of his career.  We all knew, of course, that it’s not unusual for the truly great ones to struggle with such issues; Chris Farley, John Belushi immediately come to mind as being hilarious, and then one remembers what fueled them, too.  Mr. Williams made no secret of this part of his struggles; alcohol and drugs were things he admitted to early on, and then -much later- he admitted that he struggled with depression.  At some point between 10:30 P.M. PST on Sunday and 11:45 a.m. PST yesterday, Mr. Williams’ mental illness won a long-fought battle.

Like Canio in Pagliacci, Mr. Williams decided to appropriate that final line: la commedia è finita.  Originally, I learned from my father’s many lessons in opera, the final line was sung by Tonio, the fool, but shortly after debuting, the line was given to Canio.  It just seemed, within the great scheme of things, to work better that way.  Mr. Williams, the consummate comedian and character actor, called time on his life.

Now, if we look at it from the standpoint of the casual observer, the fan that has followed his career for years, we can say “well, he STRUGGLED, but he had a GOOD life!”  Yes, he had a good life; I’m sure Mr. Williams felt a certain degree of guilt at being emotionally unable to accept this fact without attaching a “BUT” to it.  Mental Illness is funny that way: it doesn’t really process the joys and sorrows of every day in the way any of us might under ordinary circumstances.  A person who is struggling with depression and addiction does not see things in the same light that others (who are not struggling with these obstacles) do…and being told to “buck up,” or “chill out,” or “get a grip” isn’t particularly helpful.  The person battling severe depression or struggling with dependency cannot really CONTROL the way they feel, and they are often overwhelmed by things that -to the rest of us- seem tremendously trivial.

Looking in from the outside, our family life when I was teenager seemed quite fun; once inside the house, dealing with the roller coaster emotions that ruled our day to day existence, things were not as cool as people might have assumed while observing us at parties.  The boundless bouts of joy were often followed by the deepest depths of despair.  Somehow, the brief view from the top (fantastic though it was) didn’t really make up for the darkness at the bottom.  Whether you want it to, or not, one person struggling with mental illness sets the tone for his/her entire household, and “taking the show on the road” often proved to be an exercise in courage for the family members who had learned to anticipate the usual round of “incidents” that marked our forays into society.

The thing that many forget -because it’s easier to just not even think about it- is that mental illness (whether it comes in the guise of addiction, bipolar disorder, depression) is only part of the person that struggles with it, but it’s also a part that will expand, contract, overwhelm, take over when one least expects it.  If a person who is depressed could control the way they feel, do you really think they would CHOOSE to be depressed?  It’s called mental illness for a reason, and that reason is that there is no way to control the way it works.  You don’t blame a cancer patient for not getting better, do you?  Then why would anyone think that any form of mental illness involves the ability to turn it on/off at will?

Yes, Robin Williams had an amazing life; he had an amazing career; he was beloved, respected, admired.  He had a beautiful family.  He reached the pinnacle of success in his chosen field of endeavor, but…

Mental illness can happen to anyone.  In some people it takes many years to get a foothold and then climb until you’re carrying it on your shoulders.  In other people, it’s a sudden conflagration, a spark and fire that spreads.  Maybe, for a very long time, you fool yourself into thinking that nothing is wrong.  Maybe, for a very long time, people think “that’s just the way” you are.  Admitting to yourself that you need help is not easy, and admitting it to someone else is even worse; there is a deep, ugly stigma attached to using the words “I think there’s something wrong with me.”  There’s a shame we’ve all attached to saying “I’m depressed,” or “I’m scared,” or “I have lost my way.”  The usual responses to these statements are “oh, get over it.  Grow up!  Get a hold of yourself?  You’re such a melodrama queen!”

It happens to everyone; we all have bad days.  We sometimes have bad weeks.  We sometimes have entire bad seasons.  But the fact of the matter is that when your bad moments are more frequent, more significant, more persistent than your good moments you have to tell someone, and if the first person doesn’t listen, find another one.  And if that second person doesn’t give you an answer that seems like they’ve actually heard what you said, ask someone else.

In hindsight, there was a concatenation of signs over the years that should have clued us in about Mr. Williams.  In hindsight, we can all say “he was such a manic genius, such a brilliant mind, such a rapid-fire, off-the-cuff source of intelligent, funny, wild energy that..”


At some point on Sunday night, shortly after his wife went to bed, Mr. Williams decided he was done.  Maybe he reached a point where it just didn’t make sense to him to go on.  Maybe he reached a point where the only viable solution, in his mind and heart, was to take himself out of the picture, and let the frame be filled with something else.  Maybe he bought into the notion that time resets when we leave, and life goes on…

It does…life, as Robert Frost said, goes on.  Whatever questions remain, whatever sorrow is kicked up by the violence of loss (even when it’s seemingly non-violent) will eventually find its way back to normal…some sort of normal, anyway.  If anything good can come out of this tragedy (and, yes, this is a tragedy because it echoes the profound effects of mental illness on so many people who had so much to give) maybe it will be that someone somewhere will say “I kinda feel like I always have to make others happy, like I need to stay strong and rise above, but that’s not really the way I feel…”  And maybe they’ll ask for help, and maybe they’ll find a way to try to heal…  Robin Williams, because he was such a big presence and huge talent, leaves a wide, deep hole, but any other person out there will leave a hole, too…maybe not as wide or deep (to their mind,) but a hole nonetheless.


Musing…not amusing at all…

We have fallen back into the routine of the end of summer.  Summer school is done, and J has accepted that there is a two-week break between the short schedule of ESY and the regular schedule that starts on the eighteenth.  He knows that he has to put up with me, and he’s being generous about it…so far.  Of course, it’s only Monday, and we have another Monday between now and the Monday when he returns to his beloved “I’m outta here at 6:15” groove.

The phone now rings less.  We seem to be in a lull, a holding pattern before the next “hop on a plane” moment.  We find ourselves having to deal with legal matters that make us feel uncomfortable.  Legal questions regarding my father’s DNR come up from day to day, and I swing from wondering if he fully understood what he was asking for to being upset that he feels a life less independent than the one he had before the stroke is not worth the bother.

My father’s condition improves with each passing day, but we are uncertain as to how willing he really is to work at rehabilitation.  While, on the one hand, he is present enough to undo knots, pull out tubes, and rail against the situation he’s in (albeit silently as he doesn’t really speak,) on the other hand he’s not cooperating with any of the doctors or therapists that come to see him.  Trying to convince him to channel all that effort and energy into rehabilitation seems to him pointless.  He wants, Heaven help us, all or nothing…and fruit…he wants to eat fruit.

This is the part where I get angry, and -mind you- I know it’s pretty unreasonable on my part: my dad’s intelligence, his ability to learn are intact, and he thinks it’s not worth the trouble.  Where does that put him in regards to J’s ability to work and learn?  What does that mean?  I know this is probably very far from his train of thought right now, but…doesn’t my dad KNOW that there’s a repetitive, frustrating element to recovering from ANYTHING?

It’s very hard to watch TGG reacting to all this; we have always told him that one’s best effort is never really wasted.  We learn from failure more than from success.  We strive to do more.  We don’t give up.  We all have something to offer.  Unless there’s no hope of achieving ANYTHING AT ALL, there’s hope for something…  And now he sees his grandfather endeavoring to reach his demise more quickly.  My dad isn’t suicidal, but he isn’t really looking forward to living as any less than he was before he had a stroke.  And TGG, who works in the health care field, and who has been witness and participant in J’s entire life, is confused about what this all means…

Conciliating one perspective with the other is not easy.  While we all understand that my dad doesn’t want to be “a burden,” we can’t really agree that a person in his state (and with his prospects for recovery) is in the kind of situation my dad is envisioning.  Will he go back to playing three rounds of golf a week?  No, but he never did play golf to start with…  Will he go on power walks?  Not really, but he’d given THAT up years ago.  Will he be able to enjoy life?  Well, isn’t that relative?  There are people out there with full use of their bodies and intellectual capacities who are utterly unwilling to seize whatever enjoyment they can from the world.

And then, of course, there’s our view of the world as seen from people who live with J.  In a household where even the smallest achievement might have been preceded by titanic efforts, we can’t quite wrap our heads around my dad’s attitude towards recovery.  We know that we are being unfair, and that we have to respect my dad’s point of view, but we also worry that he is not entirely clear on what his prospects are, or he’s being stubborn about what he considers an acceptable level of recovery.

I don’t want to upset him, and I don’t want him to think that I don’t understand what his purpose is, but I wish I could explain to him that there is much he can still do.  I wish I could convey to him that we’ve often encountered people who think that J is “less” because he doesn’t quite do things like others…and that it’s a waste of time to try to teach him.

So that’s where we’re at.  We’re ok.  We’re just…introspective these days.  We find ourselves asking a lot of existential questions that we’d always toyed with, but that seemed so far ahead in the future that we’d barely scratched the surface…

Summer winds down slowly…the phone rings less…but the rings now feel more ominous.  And that is the new normal…