Death and other problems with the universe

“Why did she have to die?”  I get this question a lot from my daughter, who has a cognitive disability and some really big questions about death.  I have yet to come up with any satisfying answers.  If you have any, I’d love to hear from you — there’s a comment section below.

Death and its mysteries never came up during my daughter’s childhood, or even her teenager-hood. We parents with intellectually disabled children face lots of mysteries — IEP’s and 504’s to name a few — but an understanding of death’s finality is delayed, sometimes forever.  So you might say that a cognitive disability is some sort of blessing.  But the blessing — not a perspective I get carried away with, in case you were wondering — did not last.

Somewhere in her twenties, my daughter started to really “get” death.  And to say that she didn’t like what she was getting would be quite the understatement.  She’s got a problem with mortality; she doesn’t see the point in it.  Her reasoning became clear to me when her grandfather died.  Her grief was strong, and I felt overmatched by it.  Plus, she had that awful question, “Why did he have to die?”  Feeling the lameness of my words even as they came out of my mouth, I said the usual stuff — “Well, he was really old.  He was so old that his body was just falling apart and he didn’t feel good anymore and his body just gave out.”  But my daughter had a response that just killed me.

“But I still love him,” she said.  And that’s when I got it.    I realized that she figured that if a human being was still loved, they should not die because somebody still loved them and needed them.  That was certainly the case with her beloved Poppy.  And here’s the thing:  despite her grief, there was something enchanting in this moment.  I settled in and pondered awhile; here I was — privileged to see into the kind of “logic” that threads through the synapses of a brain that’s working hard, but differently.  Fewer neurons, different connections, but cogitation nonetheless.   Whatever was going on in that brain of hers, it was something to behold.

I had to admire her logic.  If she was queen of the universe, it would be ruled by love, not physics.  Well, why not?  It would certainly be a kinder, gentler universe.  But her father, in his hopelessly rational way, tried to point out that the universe would get awfully crowded if nobody ever died.  Maintaining a modicum of habitable space for the denizens of earth was simply not a compelling need as far as Kate was concerned.  It was hardly a winning substitute for love.

So the whole issue of death remains unresolved in our household.  And death comes knocking way too often.  About a year ago, Kate was peacefully reading the newspaper and I was peacefully loading the dishwasher when she suddenly let out a mournful gasp.  “Oh, no! Mom! Not Ruby!”  So I ran over to look at the obituaries and there indeed was the sweet face of Ruby, one of Kate’s favorite people at the Assisted Living Center where she occasionally helps out.  Another knock, another round of tears and questions.

Now if you’re thinking that I should be hiding the obituary section of the newspaper, you would not be alone; I’ve thought about that, too.  And sometimes we do hide parts of the newspaper, especially when a murder is in the headlines.  Because, of course, crime is a shocking assault on my daughter’s world order, too.  But I’m not prepared to hide the newspaper every day, and she never skips the obituaries.  Perhaps this obituary-reading is her way of wrestling with death, her own personally-prescribed de-sensitization treatment.  Or maybe I should intervene?  Is she just obsessing un-healthily on death (after all, she does have OCD)?  If you have thoughts about this, I hope you’ll share them with me.

Fortunately, my daughter has Down Syndrome.  Yes, I really said that, and I mean it, too.  Because 9 times out of 10 she finds something that delights her in the newspaper.  MY theory of the universe is that Down Syndrome seems to give her the ability to quickly hop out of a sad thought and into a jolly one.  That’s when I hear a delighted little “Oh!” — and I know that she’s come across her favorite kind of news — a play or musical opening soon, a review of the new “Star Wars” movie, a mention of Broadway’s upcoming Tony Awards show.  And if I look up from whatever I’m doing, I see that look of pure joy cross her face, that look I’m lucky enough to know so well.  For the moment, death has been beaten back into a corner and life is shining forth in all its glory.

She is a constant, living lesson to me, my daughter.  To be able to fully embrace whatever good comes your way,  letting it overtake whatever awfulness had been stalking your brain — well, that would be a very good thing.  And for me, it might require years of meditation and mindfulness training, but here she is, utterly delighted in this moment, this one. And it’s the reminder I need.  I walk outside, heading toward the newspaper and all its horrors, but I’m looking up.  There are leaves and sky, right now, this very moment.

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How I Became a Sixty-Something Soccer Mom

I wasn’t always a sixty-something soccer mom. Back in the 1980’s,  I was a thirty-something mom — much like the characters on that old TV show, “Thirty-Something.” In other words, I was one of those moms who tried to do it all — a career plus babies, and, oh yeah, a husband. I was NOT a soccer mom; they had not yet been invented.

All my friends were trying to pull off the same work + family miracle; nowadays the accepted wisdom seems to be that you cannot do it all. That had not been invented yet either; in fact, it was discovered by us Boomers. We tried hard, let me tell you. In fact, if you find a woman who pulled it off, she’s probably a Boomer.

When my working mommy friends and I got together, we compared notes on the whole career and children conundrum, but we could never figure out how to spread ourselves far enough to be both good mothers and good employees. After years of discussing it, my closest friend brought our never-ending conversation to a halt with this: “I don’t think we’re ever going to solve it — the kids are just going to grow up.” And guess what? She was right. Our kids grew up — and rather nicely I might add — and the problem just disappeared. Correction: it disappeared for my friends. For me, not so much.

Here’s why — one of my kids, my daughter, has Down Syndrome, so she has not really grown up — not in the up-and-out sort of way that my son did.  But by the time she finished her post-high vocational program, she had landed a part-time job working at a college dining hall.  Her days were full and satisfying.  She got herself ready for work, hopped on our community’s “handicapped” bus, and arrived on time, eager to work and to interact with her co-workers.

And then, in an extreme case of piling on by the universe, she developed obsessive-compulsive disorder at the age of 24. Her neatly-laid out world was hijacked by mental illness. In a matter of months, she went from being a highly-regarded employee who sped through her tasks to a lost-in-space shuffler who was almost unrecognizable to her supervisors.  Because they loved her, they stuck by her for a while, but eventually it became clear to everybody — except Kate — that she simply could not do the job anymore.

Her supervisors were kind; they explained that she just needed to take a leave of absence until she could get back to normal. As we drove home from her last day of work, she said “My whole world has fallen apart.” She cried. She needed a lot of help picking up the pieces.

Fortunately I had just retired after a career as a lawyer (17 years), then a teacher (10 years). I soon had a new vocation: helping Kate rebuild her world.  This new vocation of mine involved lots of driving: driving to the psychiatrist, driving to the therapist, and driving to any place that might cheer Kate up. And there were lots of meetings — meetings with DRS (Department of Rehabilitation), job coaches, potential job coaches, potential volunteer employers, etc. And how does one get to all these meetings? One drives.

It’s been seven years now, and Kate has made a lot of progress. With the help of pharmaceuticals and therapy and lots of heart-to-hearts with Mom, she has come to terms with OCD and has made progress in her functioning. She has worked as a volunteer at our neighborhood school library and at an assisted living center. Eventually, she tried re-entering the paid work force. Even with a wonderful private job coach, that was a no-go. Kate simply could not keep up the pace. Perfection takes time apparently.

Then in 2012, Kate started working at a life-sharing community for the intellectually disabled, and that’s going pretty well. The lovely folks at Innisfree are willing to work with her ritualized and slow-paced habits. Innisfree is a bit of a hike — nestled near the Blue Ridge Mountains and over ten miles down winding country roads. More driving! Luckily, a few of my daughter’s friends also work at Innisfree, and so we joined a carpool. Yes, at the age of sixty-one, I joined a carpool!  My transformation into a soccer mom was complete.

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On-the-Go Therapy with the Sixty-Something Soccer Mom

“Sometimes trying to help somebody can lead to a lecture.”  My daughter Kate said that on a recent morning.  It’s the sort of philosophical grumble that frequently issues — quietly, whisperingly — from the back seat of my car.   We spend a lot of time in the car, and the back seat is where Kate must sit, even though she’s 31 years old,  because, tiny as she is, the airbags in front are a threat to her existence.  And our frequent rides in the car are the setting for impromptu therapy sessions as Kate, who just happens to have Down Syndrome and Obsessive Compulsive Disorder, struggles to make sense of the world.

As a therapist, I have not been a rousing success.  And I do think of myself as the therapist,  and the back seat of my car as the couch.  Kate has a lot of questions — many of them some form of WHY IS THE WORLD THE WAY IT IS?  And many times, these questions are drenched in anxiety — as in why did so-and-so say that to me?  Why does she do that?  Why did he have to die? Why do I keep doing that? Why is everything turning out wrong?

All this anxiety seems to find an outlet on the long car drive between our house and Innisfree Village, where Kate is a “day-worker.”  Innisfree is an idyllic place, or so it seems to me, a “life sharing” community in a beautiful mountainside setting with fun things to work on like old-fashioned looms at The Weavery and gardens and farm animals to take care of.  But it’s Kate’s workplace, and she approaches it with lots of worries  — about conflicts with her co-workers, real or imagined slights, and, because she has OCD, the knowledge that she is once again very late for work.

So on this particular day, we are hoofing it out to Innisfree Village, and Kate is trying to figure out where things went awry with one of her co-workers.  I have been probing around the possibility that Kate herself brought on this day’s problem  — because she’s so eager to help people with THEIR problems, or because,  like a tongue worrying around a crusty tooth, she inevitably finds the anxiety-provoking element in anything.  She has parried away my inquiries with her usual “It’s hard to explain.”  This is Kate Code for “Please stay out of my business.”  I have suggested that she could have just ignored what so-and-so said and that perhaps so-and-so was not in the mood for helpful advice.  But, my own advice has devolved into that dreaded thing:  a lecture.

Kate writing a note in the back seat

Here’s my daughter/patient writing a note in the back seat

Obviously, Kate needs a real therapist.  Not because I feel like giving up ( I’ve been doing this on-the-road therapy for about seven years now), but because some person other than Mom might not have all her insights trashed as “lectures”  — thus being of more actual assistance to Kate.  Her former therapist closed her practice — could she have fallen into despair due to Kate’s failure to improve even one iota in getting to work on time?   Well, anyway, now I’m on the look-out for a new one.

Have you ever tried to find a therapist for a person with an intellectual disability?  Not a popular niche in therapist world, let me tell you.  Nor for that matter is being a psychiatrist to the intellectually un-gifted a category of interests you’ll find on anybody’s professional website. On top of which, Obsessive Compulsive Disorder is considered more or less un-treatable.  Who wants that niche?  One of my closest, dearest friends is a psychotherapist, and when I myself was in therapy, she told me that I was the kind of patient who would be a favorite — that thinkers and intellectual types are “fun” to do therapy with/on/whatever.  Though I’m here to tell you that my daughter, despite her disability, should be hugely popular with therapists.   Why?  Because she does not stop thinking, wondering and asking why.  And here’s the perfect example.  The very first thing she said to her first therapist on her very first office visit was  “How do people change?”

What a moment.  I sat there just admiring the hell out of my daughter and thinking, wow, that’s the million-dollar question, and how’s this therapist going to deal with it?  I was intrigued.  But the therapist’s answer was kind of disappointing, kind of a parrying question of her own.  But who would have anticipated that question from this tiny person with Down Syndrome?

So here I am with Kate and these existential questions, which continue to issue from the back seat.  And really, I wouldn’t have it any other way.


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