Wednesday, August 09, 2006

Party Pandora

By Cornelia

There's a certain drift I've learned to expect in small talk--those polite domino questions poised in soldierly single-file, requiring only the nudge of an introduction to begin tipping and clicking against one another. They are intended as filler, these questions, the grownup equivalent of "what's your major?"

You may trot them out in a doctor's waiting room, or with the stranger in the next seat on a flight to Houston. Perhaps at a wedding shower, when you know the bride-to-be from high school, while everyone else met her in college. They are icebreakers, frothy social lubricant, something to pass the time until the persons introduced find a topic in common, or-- having made an appropriate nod to courtesy--excuse themselves to refresh their punch glasses or see if anyone needs help in the kitchen.

They are not intended as Pandora questions. They are not meant to take any risk...

Are you traveling for business or pleasure? How do you know Ava? Are you from here originally? Do you have any kids?

Yes, I say, I have kids.

Boys or girls?


How old are they?

They're twelve, I say.

Twins! How lovely... are they best friends?

And here is where the dominoes stop, for me. There's a break in the row, broad enough that the last piece to fall can't knock against the next in line. Two paths branch out after the gap, and I have to choose which fork I'll flick into motion.

The lie is easier. I can say, "yes, my daughters have always been the best of friends, they chatter up a storm," then excuse myself to find more punch.

It may be some other innocuous question--did they ever have a secret language? are they in the same class at school? do you have trouble telling them apart?--but the answers all fork in the same two directions, and my choice always requires the same weight of decision.

If I tell the truth, my conversational companion will be required to stay by my side for at least a good ten minutes to express appropriate sympathy, to ask the weightily appropriate followup questions that neither of us probably want to take on in the midst of a wedding shower or a plane ride or a doctor's waiting room.

If I tell the truth, things are no longer inconsequential, no longer froth. There's no chance of a quick polite exit for that punch refill. The honest "no" makes sure of that.

No, they are not best friends. No, they don't attend the same school. No, I don't have any problem telling them apart. No, they don't have a secret language, because one of them has no language at all any more.


No to all of that, because one of my girls has autism, so the dominoes can't do what they're supposed to, and now the two of us must contemplate an arc of grief together, because in the midst of these festivities I have laid the burden of truth on you, a stranger.

And then I want to rush through the next part--the kind hand on my arm, the well-meant questions about how severe it is and what I think caused it (the vaccines?) and whether or not we have enough help--the part where I try not to tear up because then I'll make the other person cry too, and my GOD how I don't want to do that to anyone.

Is it hard for her sister? Is it hard on your marriage? Is there any hope she'll recover?

I answer: Yes and Yes and Not really. But what I really want to say is "let's talk about your kids or your job or anything but this--because it's okay, it really is, and you have already been so kind it just kills me, and thank you so so so much for that...."

[The hardest are the ones who look me deeply in the eyes and say, "Can I give you the name of the friend of a friend who knows all about Tomatis therapy/auditory desensitization/yeast-free diets/magnets/Phyto Bears/Vitamin B6 and magnesium/chelation/insert name of miracle here-- it’s worked wonders with so many children like yours..."

But those people are blessedly rare, so I avoid the temptation to shake them by the shoulders and say, "HELLO, if any of that WORKED don't you think it would be on the cover of fucking Newsweek?" Even though I know they're only trying to be kind, to offer hope.]

And I always wonder if I shouldn't have taken the Easy Lie route, at that point. Whether I should've just said "yes" to the first hard question and elided over reality, for the sake of conversational ease.

Here is why I don't: because too often being honest has given a stranger entree to share his or her own pain, his or her own arc of grief.

Our son is three, and we're worried...

My best friend's child was diagnosed with autism last month, right after they'd moved to Chicago...

My niece may have leukemia, and I don't know how to help my sister cope...

Our grandson...

Our daughter...

It happened again at a writing conference I went to recently. A man I was seated next to at dinner asked all the polite questions about my daughter. He kept going until I thought he had to be bored to tears, and then he began to tell me, quietly, about the fears he and his wife had for one of their own grown children, how they'd struggled with the tragedy of her late-onset affliction for many years.

I got the feeling he didn't often have an opportunity to speak of it. We finally clutched hands under the table, willing each other luck and strength and a happy ending. Bolstering each other's courage.

It helps, that stuff. I don't ever want to close the door on the chance of it happening, even for the sake of courtesy.

E.M. Forster wrote in Howard's End, "only connect!"

Only connect! That was the whole of her sermon.
Only connect the prose and the passion, and both will be exalted,
And human love will be seen at its height.
Live in fragments no longer.
Only connect...

Connection requires that we take risks. Sometimes connection can only happen when we have the courage to knock over that first Pandora domino at a party.

I say go for it, because connection goddamn matters.


  1. My sister's children have cystic fibrosis, and she has had to learn how to let THEM handle the questions now that they're older. That's been more difficult than answering the questions herself and is the source of a lot of anxiety on her part. Like she needs any more. It's so difficult when the disease is not one that can be cured and the person asking the questions may not know that.

  2. You have written so poignantly about something that is painful and true, and I'm sure none of us can relate to your daily challenges. But I can "connect" on this level: my beloved mother-in-law is lost to Alzheimer's, a cruel disease that, like Autism I think, allows one only limited communication of the love that they feel, and sentences them to a life of perhaps never seeing that love returned in a satisfying way. But every word in your post shows us how much both of your daughters are loved, and that is the beauty amidst the sadness.

  3. Oh, Karen... That must be so exhausting for your sister!

    Grace is asked questions on Lila's behalf, which is very hard for her at times, but Lila doesn't have to explain things herself because she can't.

    There are VERY rare situations in which I think it's a blessing that her autism is so severe. That would be one of them.

  4. Remember my mantra: "It's not real unless you say it out loud?" Once again, thank you for saying it out loud, and for being open to making the connection.

  5. Julia, thank you.

    I think there are a great many similarities between Alzheimer's and autism--especially that sense of the person slipping away by degrees. I was very struck by that when I read ELEGY FOR IRIS a while ago.

  6. Louise, I love that mantra, and I love what you've said about the three best words to say to a woman being not "I love you" but "I dare you."

  7. Thank you for this.

    I struggle, almost daily, whether to tell people about my own illness when they ask why I use a cane. I hear that split answer in my head every single time.

    I've met a lot of very positive stories by sharing, though I also hear a lot of "This helped my sister's coworker's bestfriend" - and I want to shake them all.

    The only way to make it okay to talk about is to keep talking. Thank you.

  8. Autumn, if you ever want me to do a little shaking-of-deserving-shoulders, just say the word--I'd be honored to gang up on the clueless with you.

    And your calling this quandary "the split answer" is perfect.

  9. Beautifully written, Cornelia. Thanks for speaking out. I'll swap you the Noni juice for the Phyto Bears... :o) As I think I told you, I am offered Noni juice and Mexican pigs continually as a "cure" for my son's juvenile diabetes. I try to remember that people are only trying to help, but they often don't like to hear that they are WRONG. (((HUGS))) to you

  10. Ach, Martha, NONI JUICE!!! What is up with people?

    I don't even want to ask what a Mexican pig is. I presume it doesn't oink? FEH!!!!

  11. Sadly, almost every one has a someone who may not be deemed "appropriate" to discuss in small talk situations--though not often, thank the goddesses, a child, which rips out your soul in tiny pieces to talk about.

    My daughter has verbal apraxia and sensory perception disorder, although she's improved dramatically in the past few years. Even so, those times when people would (and still sometimes do) misunderstand her or think she's retarded because she can't enunciate or has a screaming meltdown because the sun is too bright, basically suck.

    My heart goes out to you. You're brave to put it out there, girl. Thank you for sharing.

  12. Yes. Connection matters, and the ones that feel the most risky / scary / difficult in that first Pandora moment are often the ones we most value later on.

    Thanks for your wonderful post....

  13. I appreciate so much this post and all the comments. This year, I lost my mom after years of being her sole caregiver. I hesitate to talk with people about her, because I don't want them to feel uncomfortable or, worse still, pity me. Yet, I've found when I do speak about her, it sometimes gives others an avenue to tell me how they struggle to get the help needed for aging parents or relatives. Just a mutual undertanding of a human condition is a rare bond. Thanks for recognizing its importance.

  14. See, this is where the socially challenged people like me completely break down. I'd probably just say something completely inappropriate and then try and change the subject.

    Like: Twins? Wow, the researchers must be really interested in them. Makes for a good control.

    So... Do you think they'll ever get the Olympics here? Because I kind of hope they don't-- can you imagine the traffic?


  15. Oh, Paula... I'm so happy you've found the same thing in sharing information with people in a similar boat, and I'm with you on not wanting the pity part of it all. I don't want to be maudlin, I just don't want to *not* talk about stuff that's part of my reality.

    But on that note, Daisy, THAT'S why I want to hang out with you. I'd like to get to talk about the Olympics traffic, as soon as possible. It's a lot more interesting than knowing I'm forcing some kind person through the "autism 101" talk, to ensure we both feel we've treated the subject with enough gravity.

  16. You are so pretty in your face and brain and heart. Pretty straight through. Oh how I adore that book for that exact reason. In it, E.M. Forster makes me leap up and scream YES YES YES.

    So do you.

  17. Amen. I got so sick of people asking "How are you?" without waiting for an answer, I started to give them the truth right off. I tell people a fact, something real. I noticed it lately because it has become some what automatic. You either get the shoulder ("I'm going for punch") or you get the connect. I meet strangers everywhere that way and it is so worth it. I make an outloud comment that causes people to ignore me or to engage. Airplanes,grocery lines, elevators (my favorite). People think I'm weird anyway, so I might as well be real. That's why I like New Orleans, because I can talked to strangers there and it isn't weird.

    So right on, let those dominos fall. It is what it is. Allison

  18. On a different vein, a person once told me how someone (a co-worker of ours) had asked her how she was. And she said, "Not too well, actually." The person scampered away as fast as she could.

    We do have expectations on people, and it's painful. One of my friends carried to term with a child she knew wouldn't make it. She withdrew for many months. The pain of all those strangers who, intrusive by well-meaning, want to put their hand on your belly and smile and talk about the new bundle of joy...

    We people are often so presumptuous.

    I applaud your honesty, C.


  19. The simple "how are you?" often isn't simple. Often it's not a real question, it's a way of saying hello. But there are times when I want to answer. and the answer is never "fine".
    The problem in answering, which is parallel to what you face, is that it can go from vaguely friendly to way too intimate in a flash. Because asking some of those questions is so unacceptable in most situations. How does it affect your marriage? We all have friends we've known for years whom we have never asked "how's your marriage?"

    I get far too many of the "You must have tried rolfing/Pilates/regression therapy/therapeutic touch/chelation/leaving it to God/special vitamins" as you have. I get helpful people telling me about a sure-fire treatment for something that is nothing like what I have but they won't be stopped. And I've had my thing pretty much as long as L&G have been alive so we have this expertise, don't we? And yes saying with HUGE disdain "Why NO I never THOUGHT OF THAT" is someething I've never done, but wanted to. Lots.

    I get people offering to pray for me and that I accept, I hope, with grace. I don't believe, but I think it's totally sweet of them to offer and it's a kind act, far more than sending me medical articles.

    I never brush off anyone asking about the scooter; they usually have a relative who could use one. ESPECIALLY when a kid asks - I try and explain it simply and show them the cool things (the lights and the seat raising thingy) and push the button for the weenie horn and ask them if they don't think that's weenie.

    And yes, someone always knows someone who hurts, just as we all know someone who is worse off/better off than we are. And there are planes on which we all identify/share/get it. If someone says "can I ask what you have?" I say sure; maybe it will help them answer a question. Maybe they're scared they have something similar. I know a LOT.

    There are so many people out there who cannot deal with the fact that you don't have good news for them, that you can't say "I am getting better." It scares the bejesus out of so many people that they can't be around me. I'm sure it's the same for people who cannot quite get that Lila isn't "getting better".

    Juice. JUICE? Oy god.

  20. Cornelia,
    Thanks for trusting enough of us to 'connect'. And a super big hug for what must have been 'digging up a lot of deep feeling'. I am gratified to 'listen' and not offer advice, medical articles, or false sympathy.
    I do have a connection to autism, though. My best friend in Australia has two profoundly deaf children, both now in their teens, and one of them, her son David, is heavily autistic. While it has in the past caused the break up of her marriage to the wrong man and several relationship struggles, she perseveres in strength and in her creativity. Helen gave up her lifes pursuit of becoming an established writer to raise her children. In the meantime though, it hasn't stopped her from reaching goals as a Tarot and Reiki Master, a teacher of dance and writing, english, and creativity. David can be difficult to deal with only because he lives happily in his own little world and she will not change him or force him to be otherwise: it is society that is forcing change upon him in forcing him to communicate in 'normal' ways. Helen is currently trying to cope with that upheaval - schools can be so uncompromising some days. Meanwhile, what I do for Helen is 'listen' when she needs an outlet for frustration. We're half a world apart, but I can still send hugs, phonecalls, care packages of books and writing critiques, laughter and understanding. And listen to how horrible she sometimes feels, and the worries over money, the future and her children, I don't judge her, but believe in her and love her. Sometimes it is all we can do.
    Helen has written so many articles (some on autism and parenting the disabled)and short stories, even a novel or two. She is highly talented, witty and funny, and I will always believe that she will find her feet in recognition and print some day.
    Since I've had this dealing with Helen for over 17 years, it has helped me come to terms with not having children myself. My husband is borderline autistic, but this hasn't detracted from his genius as an artist. Autism runs in my mothers side of the family and has currently arisen twice in my generations offspring. My husband and I reached the decision long ago, not to have children, but I still get the urge to swat people up the side of the head when I'm forced to explain, again and again (sometimes to the same people) why Bob and I don't have kids. Sigh.
    Thanks for letting me share this with you on behalf of myself and my friend.
    Zen 'Hugs',

  21. Sandra, I am digging your new photo!

    Andi m'dear, amen and ramen to all that. And I love the "weenie" horn description.

    Mark... we didn't have majors, I went to one of those weird "art" colleges. Except for the year in Dublin when I studied religion.

    And Marianne--YAY for you!!!!

  22. First time at your site. Very impressed with the sincerity, thought-provoking fine writing.
    Where do you busy writers find the time?
    And a hooray to Louise Ure for today's col. Witty. Right on!

    Rita Lakin

  23. Cornelia: I'm glad that you're angry. I'm the "Helen" that Marianne mentioned. I sound like a saint. I'm not. I get angry, despairing and all that stuff too. Angry means that you want differently, that you know it's not fair. If you weren't angry YOU would be the saint, or a doormat.
    I relate completely to the innocent conversation dead ends that people bring up. I use humour to deflect the pain. "Two kids, both hearing impaired, one with autism. Must've killed a Chinaman in my last life." "My son has autism. It's like living in the twilight zone, but my spice rack is always obsessively straight and neat. Even if it is in the middle of the floor." "The day my son tells me to **** off, I will have a party."
    In the end, all we can do is keep telling the world, through writing, and in person, what it is like. And maybe, maybe, the occasional person will get it.
    If you want to talk via email, and maybe make a new friend who really gets this stuff: