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Normal Life

Normal Life

Dear Neighbor, can I be insolent enough to ask that you try to 'understand' just a tiny bit less?


Dear Neighbor,

You're probably wondering why I am writing, instead of simply telling this to you tomorrow at the park. I guess you haven't noticed how our conversations have been sounding lately. I've been getting a feeling that we're holding two separate conversations simultaneously -- neither of us really communicating with the other.

Remember those days -- way back then, before my Yitzchak got so sick? Before you even knew that he suffers from a rare syndrome which causes his developmental delays, his multiple health issues and the myriad other problems you've seen? Remember those days when we used to talk about diapers and recipes? We said the same words today, but someone -- and it wasn't me -- seemed to have been attaching a lot more meaning to every mundane line.

I said, "Oh, how cute! When did Moishy learn to walk?!"

You sounded almost apologetic as you hastily replied, "Oh, he's not really walking all that well yet. It will probably be a while before he really walks."

I said, "I don’t really get around to reading much these days."

You said, "When my son was in the hospital with pneumonia I didn't have time for anything."

I laughed and said that Yitzchak doesn't really need an afikoman present this year -- he's been swamped with gifts.

You gave what was supposed to be a commiserating sigh.

I am not sure what that sigh was all about, since all I meant was exactly what I said -- that he's been getting too many gifts lately…

I really appreciate your trying to understand. I admit it's a lot better than crossing the street or explaining how your great-aunt "had the exact same thing." But please, can I be insolent enough to ask that you try to 'understand' just a tiny bit less?

It's true that our family deals with a situation which most people find hard to even imagine. And it's true that we've had a tough year and that our concerns were a lot more serious than what most of you have ever experienced. You know all that -- after all, I saw that you joined the neighborhood list for reciting Psalms and you even sent us a hot supper once. (By the way, thanks again for that!) But we still haven't left planet earth as far as everything else is concerned. We still share the same trivialities as the rest of you. And yes, hard to imagine as it may sound, we can still talk about colicky babies, sky-rocketing prices and indifferent teachers -- and mean it.

We humans like things very simple, so we label our fellow beings into neat, easy-to-remember descriptions. "The guy who's missing an arm." "The divorcee." "The woman with the special needs child." "The girl with that awful hairdo." Then there are some people who get boring descriptions like "Adina's niece" or "the neighbors next door."

But along with these overly simplistic tags, can we also remember that there are a whole lot of other sides to these people? That the guy without the arm is also a fabulous singer, a doting grandfather, and that he hates spinach? That the girl with the awful hairdo is also always happy and nice to be around?

There are so many chromosomes that make up every single one of us (46, in most cases…) that it's a shame that we so often tend to zoom in on the one that’s most striking, losing focus of the rest of them. And I'm not just talking about special needs now.

There is so much more to us than a family who is struggling (people like to phrase it that way) with a sick child. There is so much more to my son than his syndrome or heart disease. There is so much more to our life than hospitals and doctors.

I am not saying it's easy. And the last thing I want you to say is that it's easy. But I am saying that while we carry on another secret life that you have no experience with, we have never let go of the normal life that we share with the rest of you. We juggle both. Gladly.

So next time you catch me exhausted and frustrated at 7:00 pm, please don’t assume that it was Yitzchak's fault again. Impossible as it may sound, it may actually just be something as "trivial" and colorless as my washing machine having broken down again.

May 29, 2010

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Visitor Comments: 18

(18) Ellen Lebowicz, June 1, 2016 2:10 PM

survivors' guilt

Trying to see the tree for the forest is a job we all need to work on. The author is correct in pointing out that a person is more than the nisayon they're going through. We all have nisyonos, but some seem to loom larger than others. Can we talk about our children to a person who's been childless for years, or about wedding details to our friend that is well into her thirties and still single? I've heard people say exactly what the author does, and she properly identifies how lonely it can be when there's this glass wall built around her because others fear hurting her. And there are others who do find it painful to hear people blithely talk about their children, the annoying things their husbands do, etc. and seemingly oblivious to the pain the person with the nisayon is going through as she listens. I remember years ago when I shared an office with someone new, and asking those traditional getting-to-know-you questions (that we might not ask one another so quickly today). I asked her how many kids she had, and she replied: "I don't have any." Awkward silence. Then she asked me what my husband did for a living, and I told her I was divorced. Another awkward silence suddenly broken with laughter when I said to her: "I guess we're even." Not even with nisyonos but the discomfort we each felt when we'd accidentally broached the other's nisayon.

Many nisyonos later I personally struggle with listening people discuss seemingly everyday things that I struggle with mightily, and I have to make a choice whether to go with the flow or excuse myself. I usually opt to go with it because I don't want that monkey wrench thrown into the relationship. But if I can't handle it and it's a one-on-one, I tell the person. Or if they're dancing around it I tell them it's ok, I'm fine. But I realize that those that worry about our feelings need to be told that we're ok, and we prefer that they talk to us like they'd talk to anyone, so their "survivor's guilt" can subside.

(17) Lisa, February 2, 2011 5:14 AM

thank you

Thank you for the beautifully written article. So honest, heart felt, insightful... and thanks for the reminder that we all have so many dimensions.

(16) Anonymous, June 3, 2010 4:11 PM

I understand

I've been in both situations before - one where I'm the one people pity due to a challenge in my life and one where I'm friends with someone else going through a challenge similar to yours. I generally find that you just have to get a feeling from the person if she wants to talk about the challenge or not. Sometimes if the person with the challenge doesn't have anyone to talk to about it (maybe because people just want to pity them instead of being an ear), it helps to just be very straight up about everything and say, "do the doctors say that he'll ever walk? Do you know other kids with this syndrome who do talk? at what age?" etc. Sometimes asking questions shows you care and are interested in their life. It's probably not all they want to talk about, though. So it's important to totally change the topic as well. It's a balance.

(15) Anonymous, June 3, 2010 6:49 AM

In an acute crisis, sometimes we need to empathize and show others that we feel their pain. If this goes on too long however, it becomes condescending and humiliating to the injured party. By continuing to pity them, we tell them that we think they are weak and that we do not respect them and do not believe that they have the ability to rise above their situation. On the other hand, the person dealing with the difficult situation must not allow themselves to be pitied. They need to speak up and let others know how they want to be treated. People are not mind readers. Excessive politeness is incompatible with real relationships on all sides.

(14) Judith, June 2, 2010 6:03 PM

Too caring?

The articles criticizing caring people just don't stop coming. If we cross the street, we are being hurtful. If we stop and show an interest, we are being invasive. If we bring it up, it's painful. If we keep quiet, it's painful. And now a new one, we shouldn't be overly understanding. I think the author makes a good point but I don't like it addressed to the neighbor with examples of a truly caring person being taken to task.

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