In a Fragile Silence
January 8 had been a long day. To my advantage, I’d managed to skip our regular parish, and attend church someplace where I was completely unknown. I spent most of the day working on my blog, and just resting.
What a week it had been! Hartley’s death, the wake, the funeral, Kay’s 60th birthday party … I’d barely had time to do any schoolwork … there’d been no time to be quiet and “regroup.”
I got into my PJ’s early, grabbed my lap top and headed for the bedroom. Doug lay next to me on the bed, relaxing quietly. I was doing some school work, the familiar “new email” chime caught my attention. Sarah! A response from the earlier email I sent her about not being able to come up to Old Town to visit them for a while yet.
It was short. At the end of the email … a brief paragraph:
Daein is certain he has Asperger’s Syndrome. He’s doing all kinds of little tests and looking up symptoms right now… Yeah, no cure for that either AND it’s genetic. Always love good news…
Asperger’s? I’d heard of it … but I had no idea what it was all about. I knew that Daein was very astute, and if he used the word “certain,” it was exactly the word he intended to use - and he was seldom wrong. I decided to do a bit of my own research. I was not prepared for what I found … and I never realized that what I was about to read would change my life forever.
Asperger syndrome is a form of autism, a condition that affects the way a person communicates and relates to others. A number of traits of autism are common to Asperger syndrome including:
- difficulty in communicating
- difficulty in social relationships
- a lack of imagination and creative play
A sense of surrealism crept up on me as I continued to read:
CHARACTERISTICS OF ASPERGER SYNDROME
Each person is different. An individual might have all or only some of the described behaviors to have a diagnosis of AS. These behaviors include the following:
- Marked impairment in the use of multiple nonverbal behaviors such as: eye gaze, facial expression, body posture, and gestures to regulate social interaction.
- Extreme difficulty in developing age-appropriate peer relationships. (e.g. AS children may be more comfortable with adults than with other children).
- Inflexible adherence to routines and perseveration.
- Fascination with maps, globes, and routes.
- Superior rote memory.
- Preoccupation with a particular subject to the exclusion of all others. amasses many related facts.
- Difficulty judging personal space, motor clumsiness.
- Sensitivity to the environment, loud noises, clothing and food textures, and odors.
- Speech and language skills impaired in the area of semantics, pragmatics, and prosody (volume, intonation, inflection, and rhythm).
- Difficulty understanding others’ feelings.
- Pedantic, formal style of speaking; often called “ little professor”, verbose.
- Extreme difficulty reading and/or interpreting social cues.
- Socially and emotionally inappropriate responses.
- Literal interpretation of language. difficulty comprehending implied meanings.
- Extensive vocabulary. Reading commences at an early age (hyperlexia).
- Stereotyped or repetitive motor mannerisms.
- Difficulty with “give and take” of conversation.
I began to read some of the signs out loud …
“Oh my God Doug! That’s you!”
He chuckled quietly … within a few minutes, he was sound asleep. I looked over in annoyance … of course he’d go to sleep now! When I’ve just found this amazing information, and I want to tell him … *lightbulb moment!*
And there began the first of many realizations I was to have over the course of the next several days, and in fact, continue to have today, nearly a week later.
As Doug snored quietly, I kept researching … I found a page of emails, letters, poems … written my those who are married to people with Asperger’s: that was the moment of revelation - I saw my life described in detail by strangers I’d never met. As I read, I realized that my hand was covering my opened mouth, and I was sobbing out loud - not my usual reaction to even the direst news. Doug lay beside me - snoring peacefully, as he had been since I’d managed to read the first few symptoms to him.
It all began to be clear - quite clear. I had no idea how much clearer it was going to become over the next several days.
Asperger’s Syndrome
I long to reach you -
so I stretch out my hand -
but I touch a thick glass wall -
and I don’t understand.
I think that it’s me -
something that I’ve done -
so I try double time,
to reach you - precious one.But you’re feelings are locked away -
behind that thick glass wall -
and you don’t care - or even hear -
my heartache - and desperate call.I haven’t always understood
that you can’t connect with me.
I thought you cruelly rejected
my deepest self - you see.My deepest self that FEELS -
and expresses not in words -
an inflexion or a tone of voice
or body language that occurs.My precious lonely husband -
behind glass you’re locked away.
My eyes can see a smorgasbord -
but I’m starving every day.[…]
and I must grow in love and patience
and forgiveness and long-suffering too -
through the long and empty hours -
of the silent unreachable you.When I feel like I don’t exist -
with loneliness way beyond bearing -
and anger rises to irrational heights
at this lack of nurture and caring.[…]
Copyright © 24th July, 1998 Marguerite Long
“Is Anyone Listening?…
We, the families with our blistered hearts and souls and damaged psyche, are the end-product of undiagnosed and untreated Asperger’s Syndrome. How many of us are out there? Too many I am afraid. The feelings of rejection and loneliness play a major role in the lives of the Aspergers’ family. You and your feelings are not recognized or understood by the afflicted person. You keep giving and giving and trying to change your behavior and ideas and ideals, your hopes and dreams to ‘make peace’, to please someone who doesn’t need or want your emotions, your thoughts or your feelings. They do not comprehend what you are trying so deseperately to convey. Daily living is like a prison with no boundries. Their inability to respond to you emotionally robs you of your self-esteem, friends, family, confidence in yourself and in your confidence in others. It steals a ‘normal life’ away from ‘normal’ people. Those born with the affliction of Asperger’s Syndrome survive at the emotional and psychological expense of others. Of course this is not done consciously on their part! This is the agony of Asperger’s Syndrome! Those afflicted cannot relate to our pain. The pain is in us, the parents, the siblings and the spouses, not the person with the diagnosis of Asperger’s Syndrome. Yes, we should help them! We should do everything humanly possible to make it easier for them to live in our world! But, what about those of us who have had to live in their world for years? Where do we go? What should we do, the parents, the spouses, the siblings, the bearers of this emotional pain in this unrelenting abnormalcy?
Where do we, the ‘walking wounded’ go for help?”
Anonymous, 1997
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