Autism, Grief, and a Dragonfly.


   I called up my (x) tonight because it’d been five years since Emily died.  Then I googled and found her obituary, and it turns out that it’s been seven.

                Seven years.

                X didn’t remember how long it had been.  Xe couldn’t remember the date she’d died on, but I remember, because it was the week before Halloween, and the wind was freezing cold, and all the leaves were down from the trees and lying, brown and crunchy underfoot.  It poured during the wake the day before but only threatened it on the day of the service.

                I remember it was cold.

                I remember the people crying.

                I remember the smell of the incense, sharp and cloying, unpleasant, as the priest (acolyte?) walked down the long aisle of the Catholic church, waving a metal ball before him.  The church was huge and stone, with stained-glass windows and an enormous cross at the front with a naked white Jesus on it.  It wasn’t anything like my clean, bright, fresh-smelling Unitarian Universalist home.  The prayers they said, the words they used, all were unfamiliar.  I didn’t know when to sit, stand, kneel.  I don’t recall if they offered communion, but I was acutely aware of the fact that according to these people, I was bound for a place called hell.

                Mostly I remember the confusion of it, that anything going on here had anything to do with Emily’s death.

                Emily was not there – if she was anywhere, she was not in that church, I knew.  I didn’t know why people assumed she was.

                Emily was not, technically, related to me.  I had known her for only a handful of years when she died.  A relative, when I mentioned this week that I missed her still, was confused.  Did I really know her well enough to miss her at all? I had hardly spent more than a handful of holidays and summer barbecues with her.  How could my grief still be so strong after all these years?

                And I don’t know, but I am beginning to think that it may be related to autism, and to the fact that for autistics, yesterday is very close indeed, and that the way we grieve and the way we process death is quite different from how neuro-typicals do it.  (although not being neuro-typical, I freely admit that I have no idea how they grieve at all.)

                The fact is that Emily welcomed me into her family in a time when few others did.  She had the remarkable ability to fill in my communication gaps yet treat me like a regular human being.  She died a few months before I got my official Asperger’s diagnosis, a few years before I realized that I was not straight, but I know without a doubt that she would not have cared.  These things, she would have said, are not important, because I value you for you, not despite of you.

                Emily made me feel calm in the midst of chaos.  Holidays were so hard for me to decipher, yet with her, I could figure them out.  She didn’t see me as an annoying brat who would only get in the way of getting things done, but as a real, competent human being.  The thing that stands out the most for me is, despite her cultural and familial background where food and dining had great value, she never, not once, gave a damn what or if I ate.  From everyone else I got the message that picky eating (we didn’t know it as sensory processing disorder, and the majority of my family refuses to acknowledge my sensory difficulties as anything but my own whiny way of getting attention) – picky eating was a serious, terrible character flaw.  I was rude, I was a baby, I was simply not trying hard enough.  Emily somehow got it.  She’d set aside plain potatoes or pasta for me without it seeming like a big deal.  Yet for me, it was, it still is, and I am to this day grateful for it.

                Emily died.  In May, she was happy and healthy and swimming in the pool on an unusually warm Memorial day weekend.  By Halloween, she was gone, her body buried, leaving her spouse and child bereft.  I have never figured out if it is ironic or not that she died of breast cancer during October.  I have never figured out a lot of things.

                I don’t think that there’s a heaven where people dress in white and play harps in the clouds.  I don’t think that there’s a hell where sinners burn and shriek.  I might believe in ghosts, but I would never admit to it at night.  Spirituality is incredibly hard for my uber-logical autistic mind to grasp.  Religious concepts have never made much sense to me because they are so ethereal. 

                I do know, however, that mass and energy do not ever disappear from earth, they simply change form, so it makes sense to me that all of what made Emily, Emily, is not just rotting away in a grave but is spreading out throughout the world.  Her love and life, maybe her spirit, maybe her soul, could not be contained by such a broken vessel as her body became.  They had to go….somewhere.  I just don’t know where.

                I’ve been to eight funerals in my lifetime, which really isn’t many at all.  But the majority were people who, even though I was related to them, I simply did not feel a real connection with.  With one exception, they are not people that I miss, because I did not have a solid relationship with them.  I did not really mourn them – and the one who I did mourn, I was barely eight years old and could not understand for years that she really wasn’t coming back.

                Emily knew me only as an adult, and Emily I mourned as an adult should in my culture, quietly, without displays, with getting back to work the next day.  But it has been seven years now, and I do wonder exactly when my mourning will end.  I will go months without thinking about her and then there will be weeks like this one when I cannot stop.  The pain in my heart, the ache in my chest, the tears in my eyes – I miss her.  Plain and simple, I miss her, a lot.

         Sometimes, I think of how much easier my life would be if she were here to intercede on my behalf.  I think how she could explain in a way that my family would listen.  I think how she would adore the new, small family members we have added since – how she would laugh, how she would look.

                Is it wrong to say that I do not miss my grandparents,  – stiff upper lip, scolding, distant, drinking – that I never really have – but I miss Emily still?

                Is it wrong to say that I still grieve for her, even though I was barely a distant relation?

                If you tell a little autistic kid that heaven exists, they’ll believe you.  If you tell them that so-and-so lives in their heart now, they’ll very likely be thinking that a miniature version of that person is actually inhabiting that organ.  Sometimes I wish that I was still a gullible little kid, and that I could be so sure that Emily is in a better place now.  But I’m an atheist, and I’m an honest one, and the truth is that I don’t think Emily exists anywhere.  Not anymore.

                But still I wonder.  What don’t I know?

                This story was told, in a slightly different version, at Emily’s memorial.  It remains one of my very favorite readings ever, and even to my uber-logical autistic mind, well…… makes a lot of sense.

Waterbugs and Dragonflies : Explaining Death to Young Children”
Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were
very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in awhile one of their colony seemed to lose interest in going
about. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more.

“Look!” said one of the water bugs to another. “One of our colony is climbing up the lily stalk. Where do you think she is going?” Up, up, up it slowly went….Even
as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn’t return…

“That’s funny!” said one water bug to another. “Wasn’t she happy here?” asked a second… “Where do you suppose she went?” wondered a third.

No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. “I have an idea”. The next one
of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why.”

“We promise”, they said solemnly.

One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what
was happening, he had broke through the surface of the water and fallen onto the broad, green lily pad above.

When he awoke, he looked about with surprise. He couldn’t believe what he saw. A startling change had come to his old body. His movement revealed four silver
wings and a long tail. Even as he struggled, he felt an impulse to move his wings…The warmth of the sun soon dried the moisture from the new body. He moved his
wings again and suddenly found himself up above the water. He had become a dragonfly!!

Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by the new dragonfly lighted happily on a lily pad to
rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying
around, just as he had been doing some time before.

The dragonfly remembered the promise: “The next one of us who climbs up the lily stalk will come back and tell where he or she went and why.” Without thinking,
the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water…

“I can’t return!” he said in dismay. “At least, I tried. But I can’t keep my promise. Even if I could go back, not one of the water bugs would know me in my new
body. I guess I’ll just have to wait until they become dragonflies too. Then they’ll understand what has happened to me, and where I went.”

And the dragonfly winged off happily into its wonderful new world of sun and air…….

From: “Waterbugs and Dragonflies : Explaining Death to Young Children”
by Doris Stickney


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s