Tag Archives: New York City

Friendship – Another Myth Regarding Autism

My friend Ibby is here staying with us for a few days.  It’s a working visit, but that doesn’t take away from the joy we are all experiencing because she is here.  Who says work cannot also be a blast?

Emma and Ibby 

Em and Ib

I’ve spoken of Ibby many times on this blog (here, here, here and here to link a few) because Ib has, more than any single human being, done more to change my views regarding autism and my daughter than any other person.  I know that may sound hyperbolic, but it’s actually not.  It’s true.  Or as Ib would say, “Fact.”  And it is.  Fact.  Another fact is the gratitude I feel toward her.  Just tremendous gratitude for opening my eyes, not just to one thing, but to multiple things.  As an example, here is just one little thing that happened as a direct result of Ib.

Ib gently urged me to watch the documentary Wretches and Jabberers.  When I did not immediately watch it, she reminded me and again encouraged me to rent it.  I think she had to remind me three times, before I actually sat down and watched it.  And because I watched W& J, when I presented at the Autcom Conference last fall I went to hear Harvey, Tracy, Pascal and Larry’s presentation on supported typing and because I went to that presentation I had the idea that maybe, just maybe it might be the thing that could help my daughter communicate more reliably and because I had that idea I approached Pascal and asked if he was ever in New York City and because I asked him that, Pascal began helping us learn to support Em and because we started helping support Em I began to understand what presuming competence really meant and on it goes like the “If You Give a Mouse a Cookie” books, one thing leads to another and another and suddenly you look back and see that this person, this one person has influenced another (me) and the ripple effect is so far-reaching and beyond anything anyone could have imagined.

The Wretches and Jabberers example was just one example of one tiny thing Ib had a hand in.  I could name at least a dozen or more much larger examples, like the conversation (documented ‘here‘) we had about language and my daughter’s specifically and how sometimes she says things that seem completely unrelated to anything that’s going on, but how it is related, even if it’s not related in any way I can identify.  Sometimes it’s a leap-frog kind of association, often there’s an emotional component too, so when she suddenly blurts out, “No not going to see motorcycle bubbles” I now know Em is thinking about visiting her Granma in Colorado or is anticipating an electrical storm or watching the 4th of July fireworks display from the ranch. There’s excitement and maybe some anxiety and even fear and eager anticipation.   I know this now because Ib has helped me understand and has taught me how to “lean into” her words and not try to do a word for word translation.

Ib and I have been working on a book together about Autism, Inclusion and Friendship.  As a result I am thinking a great deal about friendships and relationships in general what they mean and how they develop and how the very definition of friendship is about inclusion and support and accommodation and giving each other slack and cheering each other on and appreciation and gratitude and being there for the other person.  It’s a mutual give and take and it’s reciprocal.  Relationships are basically what make this world and life worth living.  Ironically friendship was the thing I wrote about on this blog’s first entry.  It was what I wanted my daughter to experience, but feared she might not ever have, because I believed what I was being told about autism and that myth surrounding autism and being alone.

Over three years ago, when I started this blog, I wrote, “…hope that we may help our daughter Emma, now 8 years old, lead a life that includes deep friendships and the powerful bonds that result from being able to communicate with one another.  A life that is enriched by our interactions..  this is what I dream of for her..”   Who knew that not only would my definition of what constitutes “communication” completely change, but so would my mistaken ideas about my daughter’s ability to have friendships.  As an added plus Ibby is not only in my life, but in my entire family’s!

So yeah, Ib is really important to me.  I love her dearly; we do all the things friends do when they get together: confide in each other, laugh, hang out without having to talk, hang out and talk and talk and talk, cry, and when we aren’t physically together we stay in touch.  But as with all really close friends, Ib is in my mind and heart regardless of where she is.  I think about her and when we haven’t spoken for a few days we reach out to each other and connect, sometimes briefly if we’re both busy, but she’s always “here” in my heart.

As Ib has said, “Friendship is Fact.”

Vanilla cake with vanilla icing – made by Emma, Nic and me 

Ib's Cake

 

When Plans Go Awry… Take Photos!

The kids are here…

Water Park

And Richard and I are not…

That’s right.  We are having a staycation!  Woot!  Woot!

Don’t misunderstand me, I think about the kids all the time.  I began to worry when we hadn’t heard from them in 10 hours, but being in New York City for two days to just do whatever we want, when we want, without worrying about anything other than what museum we should go to next or where we should eat dinner, while knowing the kids are having a blast…  Yeah.  It’s pretty fabulous!

We began with a trip to the Metropolitan museum, where we saw the George Bellows show, followed by the Matisse show and then we wandered through various other galleries, and saw this, from the artist, El Anatsui who lives in Nigeria, but was born in Ghana. I love this artist.  Look at how the fabric drapes and folds.  This piece is massive and covers most of an entire museum wall.

El Anatsui

After a few hours we headed back downtown where we roamed the East Village, ate at a terrific little restaurant called The Redhead where the cheese grits are fantastic, as was the buttermilk fried chicken.  Then off we strolled to the IFC Center  (Independent Film Channel) where we saw the Academy Award-Nominated Live Action Short Films.  There are some great ones, but my vote goes to the South African short film, Asad.

Yesterday we slept in and went to MOMA (Museum of Modern Art).  This wonderful sculpture is on 6th Avenue and 54th Street.

The Egg

For those of you unfamiliar with my jewelry, I’m including an image of an 18 Kt gold and Ceylon Sapphire ring I designed and made three years ago.  I think you’ll see why this sculpture speaks to me!

R11zoom

After MOMA we went back to the IFC to catch the Academy Award-Nominated Documentary Short Films and had dinner at another fabulous East Village restaurant, Back Forty.  If you find yourself there, you have to get the  freshly baked Parkerhouse rolls.  Amazing!

At 3:50AM this morning my cell phone rang, which I ignored and then the home phone rang, which can only signal trouble.  It was my security company calling that they were being notified of “unknown” activity at my studio and did I want the police called.  Yes, thank you very much, I would like the police called, I responded groggily and then threw on some clothes, grabbed my keys and grabbed a cab and went over to my studio (which is NOT in Manhattan).  I arrived just in time to see a police car slowly cruise past my studio building without stopping!  I ran upstairs, carrying…

wait for it…

yup, my camera!  Because I am never one to miss an opportunity to photograph something and you never know…

I know.  Not exactly a weapon, but I figured if anything was amiss, I could at least document it.  This was my thinking.  And I’d just like to remind everyone that it was FOUR IN THE MORNING!   Everything was dark and quiet and so after checking all the windows and door, I returned to the city.  But not one to miss an opportunity I hung out the window of the cab and got some crazy shots of the Chrysler Building as we drove over the 59th Street bridge.  The white light is the Chrysler Building.

The Chryslar Building

I was back home by 4:30AM and… wide awake.

But what an adventure!

An Ode To Richard ~ On His Birthday

Richard’s birthday falls on Valentine’s day.  We met on Christmas day at a Christmas party.  I didn’t know many of the people at the party, but parlor games were being played (always a good ice breaker) and Richard, no matter who he was teamed up with, was winning.  I remember seeing him seated on a couch near the window that looked out on to the snow drifts on 8th Avenue.  I remember how intense he was and focused.  He was funny, in a dry, smart kind of way.  He was  one of those people who doesn’t seem to really care about what others think, a bit of a rebel, certainly someone who doesn’t take orders from others.  (Have I mentioned that people say I can be a little “bossy”?  Not that there’s any truth to that mind you.  I just have really good ideas about how things should be done.)  I remember the way he looked at me.  I remember saying to him in front of everyone there, “Are you flirting with me?  I thought you were flirting…”  He grinned at me, with those dimples of his and answered, “Well I was flirting, but I was also asking you a question.”

I can’t remember the question any more.

Right from the beginning ours was not a traditional nor particularly conventional courtship, if you can even call it that.  We went out with groups of friends a few times, always making sure we sat together, always pretty much ignoring everyone else.  We had planned on going to a New Year’s Eve party together, but Richard got the flu, so I went alone.   The next day I received a call from my mother that my father wasn’t well.  I grabbed my wallet, a toothbrush and a pair of underwear, (I’m serious and yes it was a bizarre choice, particularly as I brought nothing else) hailed a cab and caught the first airplane I could get, out west.  Those were the days when you could show up at the airport, without a driver’s license and take a plane where ever you felt like going.  By that night I was at my parent’s house.  Two days later my father died.  Richard and I spent at least an hour every night on the phone.  He held my virtual hand.  He said all the right things, he listened, he talked, I listened.  We talked about death and life and our childhoods and everything in between.  There were lots of tears and emotions.

A week later I returned to New York in love with a man I had spent almost no time with alone.  But I knew the essentials.  I knew he was kind.  I knew he was smart and funny and wise and ambitious and curious and utterly unconventional.  I knew he was a tad quirky.  I knew he had strong opinions, was a bit esoteric, had some weird ideas about aliens and wanted more than anything to see a UFO in his lifetime.  I knew he had a tough childhood and a past that was complicated and I knew we were both in for the ride of a lifetime.  I knew it wasn’t going to necessarily be an easy relationship,  we are both far too feisty, opinionated and sensitive for that, but I knew this was a man who would challenge me and I wanted and needed to be challenged.  That hasn’t changed.

Over the years we have learned to give each other slack, to not pick apart every perceived slight, we have learned to weather our differences, we’ve learned to respect our marriage even when we’re angry with each other and don’t agree.  We’ve learned the art of letting go, not needing to control so much, it’s definitely a work in progress.  We’ve learned a great many things from each other and we keep learning.  We have two beautiful, quirky kids whom we love and adore.  We do not own them.  We do not mistaken our children as extensions of ourselves.  We do not mistaken each other as extensions or expressions of ourselves.  We are a family, a beautifully diverse, vibrant family who respect one another and give each other the space each needs to (hopefully) grow and flourish.  Richard reminds me to “take it down a notch” when I become too fixated on something that is not within my power to change, he encourages me to fight and change the things I can, he is always there for me, supporting me and cheering me on.  He believes in me even when I don’t believe in myself.  He believes in our children with the same dedication and passion.

I can honestly say I love him even more today than when I first fell in love with him on that snowy, wintry Christmas day so long ago now.

Happy Birthday dear Richard!

Richard – then

A young Richard Long

Richard – Now

*Richard

The Joy Of Communicating Without Words

This morning it was 17 degrees fahrenheit, but with the wind chill it felt as though it were 5 here in Manhattan, this was according to my “The Weather Channel” iPhone app.  Because of the ongoing New York City school bus strike and because my husband is SuperDad minus the voluminous cape and lycra tights, Richard has been taking Emma to school each morning for the past ten days.  But this morning it was my turn to step up to the plate.

7:30AM this morning

Me:  Okay Em.  So here’s the deal.  I’m going to take you to school today, but Daddy told me it’s tough getting a cab, so we may have to walk.

Em:  Take taxi with Mommy to school.

Me:  Well, we’ll try to get a taxi outside our building, but if we can’t get one right away, we’re going to walk.

Em:  No, I don’t want to walk.  Take taxi.  Just you and me.

Me:  Em, we’re going to try to get one, but if we can’t we’re going to walk.

Em:  Nodding her head.  Together.

8:15AM

After trying for several futile minutes to hail a taxi we began to walk to Emma’s school.  The sidewalks were crowded with parents and children.  As Emma and I made our way in the cold, Emma began to make a loud singing like sound.  It wasn’t a song, more like one line of a song, sung loudly.  People turned to look at her.  At first I just continued to walk next to her, my hands tucked into the pockets of my coat for added warmth while Emma repeated the same song-like refrain loudly.  A few people stared.  Em linked her arm through mine and sang again.  I looked over at her, ignoring the curious looks from those we passed and sang back, but in a slightly different pitch.  She smiled and did it again.  I echoed her.  She laughed.  As we continued along toward her school in this way I noticed a few people smiling as they walked by us.  Once at an intersection Emma stopped “singing” and instead winked at me.  I winked back.  When we eventually arrived at her school, Emma turned to me and said, “Bye bye Mommy.  Had so much fun walking to school with Mommy!”

Yup.  Me too.

Emma – 2003

Em2003

That Wasn’t A Question

Last night.  I’m at my computer writing.  Emma walks past me.

Em:  Have cereal and toast?

Me:  Em, you just had dinner a little while ago.

Em:  Time for cereal and toast?

Richard:  What?  No Em.  You just ate.

Em:  Emma’s hungry.   Have cereal and toast.

It took three times, but then I understood.  This wasn’t a question, this was a statement.

And with that, Emma went into the kitchen and fixed herself dinner #2 – cereal and toast, while Richard and I looked at each other and laughed.  

Evening light – New York City, 2013

Light

Less Than A Year Ago…

If I don’t immediately take notes during and after my typing sessions with Emma, I would wonder whether the words she typed were a figment of my imagination. There is something almost magical seeing and reading the words typed from someone who does not, or does not easily, communicate with spoken language.  It reminds me of the time I went to a lecture given by Soma Mukhopadhyay with her autistic son, Tito who began answering questions from the audience.  Tito is non-speaking and has a great many stims, yet translates his beautifully eloquent, poetic  thoughts into words and has no problem answering any question posed.  It’s often a disconnect for the neurotypical person watching someone who isn’t able to verbally say what they are thinking, yet has no trouble writing their thoughts, which in no way match the presumptions we, NTs tend to make.  If you’ve never witnessed something like this, it can be pretty mind-blowing, which says more about the limitations of neurotypical thinking and the constraints we unintentionally place on others who seem different from us than anything else.

Last night I began Emma’s session with a question.  It’s the same question I always ask her.  ”Hey Em, how about after you sing this song we do a typing session together?”  And Emma answered, as she does every time I ask her this question, “Yeah!  Typing session with Mommy!”  Emma’s excitement, in and of itself, makes me incredibly happy.  That she’s interested and (I think) looks forward to our sessions as much as I do, makes me believe we are on the right track.  When we went into the room, now dubbed, “Emma’s office” I tried to think of a question it seemed likely Emma would know the answer to, but that if she typed it out, I would be surprised.  As we are leaving soon to visit her Granma for the holidays, I said, “When we fly to Granma’s we have to first take a taxi to an airport.  What’s the name of the airport we usually go to?”  Without hesitation, Emma typed, “La guardia”.  Wow!  Just wow!  I then asked, “There’s another airport near La Guardia, we don’t usually fly out of, but what’s the name of it?”  Emma, again, without hesitation, typed, “kennedy”.  Whoa!   Then I threw her, what I thought would be, a curve ball and asked, “When we fly out of La Guardia we always take the same airline to visit Granma.  What’s the name of the airline we always take?”  Emma wrote “United”.   EEEEEE!!!!!  Snoopy dance.  Give me a moment while I hyperventilate.  Whooooo, whooooo.

Emma went on to tell me what state and city we live in, the name of the state we were flying to and when I asked, “What’s another name for the city we live in?  It starts with an M?”  Em immediately typed “Manhattan” though she forgot the h and one of the ts.  I followed up with, “And what’s the neighborhood we live in?”  Emma, again without hesitation, typed, “Chelsea.”  Taking another deep breath.  For those of you who are doubting what I’m writing, I understand.  Really.  I do.  As I wrote above, I actually had to take notes during our session, because I knew I would come away as if in a dream.  (Ibby suggested I record our sessions together and I keep forgetting to do that, but I have to remember to from now on.)  That’s what it feels like, a dream.  I absolutely believe in my daughter’s competence.  I believe she is far more competent than most people who come into contact with her do.  I do not for a second doubt that she has a busy, complicated and fascinating mind, filled with thoughts, ideas and knowledge I can only guess at.  But to know this, to believe this, is different from being shown this.  I don’t mean to offend any of you reading this who are non-speaking and communicate by typing.  I don’t mean to offend, really I don’t.  I hope that were Emma to ever read this she will understand what I’m trying to say.  This is not about Emma’s limitations, either intellectual or otherwise, this is about my own.

For all you neurotypicals who can speak, humor me for a moment.  Think about how you would feel if you could not speak.  Think about all the things you know, but couldn’t say.  Now imagine if you were told something simple, like the city and state where you lived over and over, repeatedly, day after day.  Just think about this for a second.  Close your eyes and try to imagine what it would be like to not be able to speak.  Imagine that well-meaning people tried to help you speak through repetition and you were not allowed to move on until you were able to say these things being “taught” aloud.  Imagine how you would feel were you never able to say these things, so you weren’t allowed to move on.  It was assumed that because you couldn’t say them, you must not KNOW them. And yet, all this time…   all this time you really did know these things.  Not only did you know these things, but you knew so much more.  But no one believed that you did.  No one treated you as though you did.  Less than a year ago I assumed Emma did not know.  Less than a year ago I assumed Emma did not understand.

Less than a year ago…

Emma waiting for the school bus with her string

*Em

“Burden”? I Don’t Think So.

The roller coaster I call “autism” is less actual and more a description of my emotions, expectations and judgments surrounding specific things such as communication differences, internal issues, pain perception, sensory issues and the different ways in which Emma takes in information as opposed to the way my (more often than not) non-autistic brain works.  (My friend, AspieKid calls brains like mine NT-NOS, which I think is a hilarious and fitting acronym.) It is a “roller coaster” of my own design and construct.  A roller coaster being an accurate description of my emotional state, something I’ve grappled with my entire life and certainly well before I ever met my husband and had children.  Suggesting “autism” is the root cause for those pre-existing twists and turns my emotions tend to take or pinning the psychological upheavals I’m experiencing onto “autism” is not only wrong, it’s dishonest.

The truth is, I’ve always been a bit high-strung.  I live in New York City, a city whose inhabitants wear their neuroses proudly.  Neuroses in New York city are treated the way a runny nose is looked upon in the mid-west.  No big deal.  New Yorkers have melt downs at the drop of a hat.  I’ve seen fist fights break out between grown men in the middle of an intersection because of a perceived insult, people routinely scream at each other and cut each other off while driving.  Moms pushing babies and toddlers in Hummer-sized strollers wield them like tanks plowing a path for themselves along clogged sidewalks like Moses parting the Red Sea.  People think nothing of getting into loud arguments with lovers, neighbors, friends and strangers in the middle of the sidewalk, forcing pedestrians to walk around them.  It’s a city of ids and super egos.  It’s a city that is (perhaps) an exaggerated version of what one sees anywhere in the world.  People are capable of some pretty dreadful behavior.  Add a child with a different neurology to that already fragile, high-strung mix and you’re going to get some interesting results.  To then conclude that autism is to blame, defies all logic.  No one would do that.  Yet people blame their bad behavior, their inability to cope, their sadness, depression and general irritability on their autistic child all the time.

Suddenly it’s autism and Autistic people who are a “burden” to society.  Autism isn’t a “burden”.  It’s the negative views of autism, it’s the autism = untold horror, it’s the perception of autism and the lack of understanding and services, the lack of training and programs in our schools so they can help our Autistic children learn in a way that will ensure they flourish.  The “burden” is not our Autistic child on society.  The “burden” is the lack of support and adequate help families need so they can better support their child, giving them the sort of assistance  they need to thrive and flourish, a child who will one day become an Autistic adult and, in an ideal world, an active member of society.  We have to move away from this idea of Autism = burden.  Autism = tragedy.  Autism = _______ fill in the blank with a negative word.  We need to abandon our preconceived notions of what a non-speaking Autistic child cannot do.  We need to open our minds to the idea that our children are capable of far more than we may believe or can fathom.  We need to begin looking at what is good about Autism and the countless ways in which Autistic people can and do contribute to this world.  We need to remove the stigma and negativity and replace it with a more balanced and yes, positive view.

Imagine a world that includes Autistic people, accommodates Autistic people and stops shunning, restraining and abusing them.  A world in which it is not okay to have seclusion rooms and restraints, where a non-speaking person is treated with respect and without prejudice and where it is not assumed that because they do not speak they have nothing to say.  A world where people finally understand the burden isn’t the Autistic person, whether child or adult, it’s the lack of services, the judgments and the scare tactics being used.   Autism is big business and there is no better way to ensure dollars continue to pour in than when we are terrified. Let’s change that.

Having a child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have.  Having an Autistic child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have.   One can say that about a great many things in this life.  Let’s stop blaming Autism and our Autistic children for the ills of the world and the bad behavior displayed by people.

Emma and her infectious laugh

Em

What Makes You Happy?

Happiness is….

My husband

*Richard

Our son

Nic

Em

A flamingo

Our fabulous kitty

Merlin and the Gator

This…

Nicw:dogs

and this…

Emonherpogostick
the ranch…

6AM

7:00 AM in New York City

AMin NYC

And this… this one’s for you, Brenda

Ilovemyshoes
and this… Angie, love and kisses… (Em took this and it’s pretty blurry, but you get the idea!)

kisses

What makes you happy?

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“Hurricane’s Suck, Have A Croissant”

Processing…  I haven’t.  There are still too many people who are without power, whose homes have been destroyed, too many people who continue to have no heat, no hot water or any water at all, too many displaced people, too many who have lost so much….  How does one process this?

Nic had nightmares last night about a zombie apocalypse where he was the lone survivor.  Emma is perseverating more than usual; her stims have gotten noticeably worse; her scripting more pronounced.  I watched her yesterday as she did her Sunday morning DJ routine, listening to all her favorite songs, singing and dancing, losing herself in the music and felt both grateful for all we have and utterly exhausted.  I slept seven and half hours last night and yet feel as though it were 5.  I am feeling fragile particularly sensitive and emotional, and we were the lucky ones.  We have power, heat, hot water, a home that is undamaged, everything’s back to “normal” and yet it isn’t.  I don’t know what normal means anymore.  Where do we go from here?  How do we process this?

On Friday I went downtown and took photographs.  The lighting wasn’t great, it was impossible to capture the mood or what it felt like to walk along empty streets where the only lights came from headlights on busses, taxis and those who still had enough gas in their cars to get around.  I couldn’t photograph the group of young women weeping in the street or the man looking for his father whom he had not heard from in four days or the old woman painstakingly climbing the stairs of her unlit building, her pug tugging on its leash, urging her upwards into the darkness or the faces of all those people I passed obsessively checking their dead cell phones, trudging north with the hope they might find an available electrical socket that would breathe life into it.  I’m not a skilled enough photographer to be able to capture any of that.  (I’ve provided a couple of links to some professional photographers who were though.)  But I did get a few images that at least document the storm and our resilience…

One of the many Chelsea art galleries whose flooded basement held art work. 

An intrepid New Yorker who found a way to stay open despite the power outage downtown

Powering up on 7th Avenue

The “Doll House” on 8th Avenue

Kindness on 14th Street

Pizza by candle light

Emma wasn’t able to go trick or treating, but she still dressed as a butterfly on October 31st

The Statue of Liberty during the storm

We are capable of so much.

Be grateful.

I am.

A City Divided

Today is the first morning I’ve had the time, the electrical power and the energy to write a post.  It’s with some horror that I read my last post.  Who knew Sandy would cause so much devastation and damage?  Evidently  pretty much everyone, well except us, it turns out…  I don’t think I need to say a whole lot more here, other than we were lucky and are fine.  We had a huge stock of batteries, thanks to a tendency to overstock supplies and having children with battery operated devices, I even found a solar-powered radio/flashlight my brother had sent me a few years ago after the last blackout and a drawer full of candles and flashlights.  My mother periodically called with updates and my brother sent text messages with the latest news.

A good friend who lives above 26th Street (and therefore had power) was kind enough to open her home to many of us without.  It took hours to power up our devices, but at least we weren’t standing in line at one of the many delis and stores north of 25th Street who had brought out power cords allowing as many people as possible to power up.

All is dark, including the traffic lights south of 25th Street


Monday morning as we took the children west to survey the damage in our now dark world, we attempted to cross 8th Avenue, but had to wait as cars raced past taking advantage of the power outage and dark traffic lights, never breaking despite the fact we were with two children.  For those cars on the cross streets waiting, hoping someone would slow down enough to let them through, it was a lesson in patience and a stark reminder of how badly people can behave given the opportunity.

One of many buildings in Chelsea near the West Side Highway

Our building still has water, it’s only now running out, other buildings are not as fortunate.  We also were fortunate enough to have a gas stove, which means we are able to heat water and even made pancakes for Emma one morning.  By the third day, Emma’s stress level had become noticeably worse.  (As had mine.) Perseveration, stimming and echolaic speech had all worsened.   I started looking into hotel rooms for us already on Monday while waiting for our phones to power up at my friend’s home, but couldn’t believe when I saw a “Budget Hotel” in midtown charging over twelve hundred dollars per night for a room.  I probably could have booked something had I thought to (and most hotels were not price gouging), but by Tuesday there were almost no rooms left and by the time we seriously began looking on Wednesday we found only one hotel with a room available, which we booked, only to learn that it had been evacuated because of the crane in Midtown that forced a number of blocks to shut down.

Richard took matters into his own hands and called my cousins who welcomed us into their beautiful home uptown.  We are grateful to have somewhere to go and relatives who were willing to take us in, people who were kind enough to open their doors and had spare bedrooms to accommodate us.  Meanwhile Nic went to his friend’s house in Brooklyn, where he is playing one endless marathon video game of who knows what with his friend.  We miss him, but are relieved to know he’s being taken care of and is happy.

I wrote the following and posted it on my Facebook page last night:  ”It’s hard to capture a visual of A Tale of Two Cities: Downtown without power, Uptown life continues. North of 26th Street where there is power, lines of people wait to use an electrical plug to power up their cell phone, below 26th Street there is no power, many buildings are without water now, others will be without water soon. Guys are hawking C & D batteries on the street corners, one guy has a sign saying, “We sell CANDLES” Large flashlights are a hot commodity. And yet… just a few blocks north people are watching the news of devastation on their flat screen TVs. Two worlds divided by electrical haves and have nots.”

To be without electrical power is to literally be without power.  Those who are above 25th Street, a purely arbitrary division are able to listen to the news or not, make phone calls, take showers, fix nice meals for their families, choose to open their homes, help people if they decide to, but those south of 25th do not have these choices.  It is surreal.  Those without power who had the means and the wherewithal to book hotel rooms on Monday did so.  The decision to continue with the New York City marathon this Sunday was a stark example of the massive disconnect that has occurred in this city.  That officials were blithely holding press conferences defending this decision while people are trying desperately to locate family members they haven’t heard from who live in the southern parts of the city is  just one more example of how surreal things have gotten here in New York City.

*I am one of the people who feels it is insulting to carry on with the marathon, exacerbating the traffic jams, reducing the numbers of available hotel rooms, a symbolic thumbing of their noses at all those who have not showered, had something hot to drink or eat, are without heat, water, light or have been evacuated.  I see the people running along the streets, weaving in and out of the traffic grid lock and I can only assume, as they head south, that they will eventually head back north to a hot shower.  Yet another example of the difference a little electricity makes.

*This post was written before we lost wi-fi this morning and at the time the marathon had not been canceled.

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