Deborah Carney

Where I Celebrate Life

To-Do Needs to Include Wanna-Do

In a private Facebook group the Administrator brought up about working on something on your “Wanna-Do” pile instead of your “To-Do” pile today. That got me thinking. My Wanna-Do list is the first list I tackle each day. I have the luxury of being self-employed and therefore I can work around my daily tasks.

I have lost 2 sons, a sister and many others in my life. I lost all my house and 99% of my “stuff” in Hurricane Sandy (I am grateful we lost no people). I have learned the hard way that tomorrow isn’t promised.

I’ve had times in my life where I was seriously depressed and agoraphobic and have had serious health issues.

I take each day as a new slate to create a new reality and do what I “wanna-do” that will make memories for me and my family (I have a daughter and grandson.) I encourage my daughter to do things she can’t really afford because tomorrow isn’t promised. Do what you are driven to do and not what you “have” to do.

I’m not self-indulgent or hurt others. I make enough time for the “have to-do” but I make sure I do the “wanna-do” every day.

Today I have a long to-do list, as I do every day. When you are self employed the to-do list never goes away. But today I will take my camera and go for a long walk. Because daylight hours are for fun in my world and the dark hours are when you “work”.

Unless you are outside gazing at the stars.

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My 9/11 Story

After a rough weekend and a tough and scary Monday, we woke up late Tuesday morning and turned on the TV expecting to see the Rosie show. “What’s this? The news? Is this a War of the Worlds type show? Is this live???? That is an airplane flying into the World Trade Center!”

I had already started our morning routine by turning on Dan’s computer and the TV and was getting ready to get him up when we were riveted to the TV. Tired from a rough day and late night, what we were seeing wasn’t making any sense. The computer fired up and we started the programs running, Yahoo Instant Messenger was one of the first we always opened. I took Dan into the bathroom, got him dressed and into his wheelchair, all the while listening and trying to comprehend.

My son Dan and I were in NYC, in an NYU dorm on Washington Square Park. The semester was supposed to start Tuesday September 11, 2001. We moved him there from our home in Rochester, NY two weeks before. Dan has Spinal Muscular Atrophy, a motor neuron disease that he was born with. He never walked or was able to bear weight, and had been in a power wheelchair since his teens. Before that it was a manual wheelchair.

Dan was a writer and had already spent a year at Hofstra University studying Journalism. But his passion was writing screenplays. He had applied to NYU’s prestigious Film Writer’s program and had been accepted. Everything was supposed to be set up with him having personal aides ready and available for him like he had at Hofstra, but there was a glitch and the school hadn’t gotten that set up. So I was staying in the dorm room with Dan while we got things straightened out.

In the meantime, we had to go back to Rochester and get his brother Chris, who also had SMA and move him into a dorm at Hoftra. He had the same room and personal aide as Dan did the prior year, so his move went a bit smoother. Chris and I also showed cats, and the weekend of September 8 and 9, 2001 there was a show near Washington, DC. Dan’s girlfriend lived in Baltimore so it worked out that we could all have a fun weekend before they got immersed in school.

Now if you have ever parked a car in NYC you know that it is expensive and not at all easy. So once we realized it was going to be a possibly a few more weeks before they found Dan an aide, I decided to drive the van we had back to Rochester, and fly back. The timing on this was pretty crucial because Dan would be alone while I was driving and flying. The timing looked fine, it was 5 – 6 hours to drive to Rochester, there was a Jet Blue flight at 8 pm from Rochester that would get me back to JFK by 9:30, and a shuttle would have me back at the dorm by 10 – 10:30 pm.

I left Dan with food, TV remote and drinks – he had a small refrigerator with a microwave on it all set up within his reach. His room was pretty well set up for him, so the only issue was hopefully he wouldn’t have to go to the bathroom while I was gone. We really didn’t know anyone in the building yet, so he had no one to call if there was a problem. So there couldn’t be any problems, right?

I left somewhere around 9 or 10 am and the drive was smooth. No traffic or construction issues. So far so good. I packed up some extra things to have with me, books, notebooks, things to work on. I didn’t have a laptop yet, and didn’t bring my desktop computer, I was going on a plane after all and shouldn’t need to be in NYC too much longer. I got to the airport and the flight was delayed. That was going to be a problem, since we had this all timed out and I had the shuttle reservation and Dan was alone. I called and let him know.

At the airport it got scarier, I started to freak out. They were talking about the weather and the possibility of canceling the flight. That was unacceptable. Just when I was about to start looking at other airlines they called us to board. We left at around 9:30 pm, when I was supposed to be landing. But at least we were on our way. Except once we got to JFK there were still weather issues plus all the other delayed planes that needed to land. We circled. And circled. I started to panic again. What if they sent us back to Rochester? What if there wasn’t a shuttle available once we landed? I hadn’t been in NYC long, I didn’t know about the endless supply of cabs or the fact that you could get a shuttle from the terminal. I also didn’t really know how far it was from JFK to the dorm.

We finally landed at around 11. I was still panicking about the shuttle, but was able to get on one fairly easily. I told the driver Washington Square because I really didn’t know my address. It was Goddard Hall but of course the driver had no clue where that was. We went around the terminal and picked up other passengers and finally headed out. I was still pretty freaked because Dan was alone for a long time now and I didn’t know who was being dropped off where and how long it would take.

After an interesting drive out of Brooklyn to Manhattan, the driver stopped at the base of the Twin Towers, near the Hilton hotel on Washington Street. I looked up and said to myself that I would be back since I hadn’t gotten to the top of them yet. We all looked around to see who was going to get off and the driver looked at me. I said no, I’m going to Washington Square. The whole shuttle groaned and the driver slammed the door shut and started up the street. It was 12:05 am on September 11, 2001.

It was 12:30 or so when I was dropped off at the dorm. Now even more fun ensued. I had no ID that said I should be there, Dan’s cell phone battery had died and he couldn’t get to the room phone apparently because when the security guard called up he didn’t answer. So here I am standing in the lobby of a dorm at NYU with suitcases, drenched from rain, my son is on the 3rd floor and I can’t get to him. I don’t remember when she finally let me go up, I remember trying to explain that Dan was handicapped and had been alone for over 14 hours and he needed me to get to him. It got heated. I was very upset. I told her to go up and see for herself but she was alone and couldn’t go up. It took about an hour for me to convince her to let me go up. I think she finally called someone to go with me, all I knew is that I needed to get up there.

Once upstairs, Dan was fine but he wanted something to eat so I went back out, checking with security that I would be able to get back in. There was a 24 hour deli on the corner, as there is on most Manhattan corners. I got the first of many orders of chicken fingers and fries, we ate and finally settled in to bed at 2 am or thereabouts. We were both pretty tired.

Computer is on and Yahoo messenger is pinging away, we’re still trying to figure out what is going on on the TV. I look at Yahoo and Dan’s sister Liz is frantically trying to get ahold of us to see if we are ok. The events of the morning start to unfold. She tells us that they have been trying to call us, sure enough the phone neither the room phone or Dan’s cell phone are working. We’re kind of surprised that we have internet, but that is because NYU has it’s own intranet. This was how we were able to stay in touch with the outside world.

We didn’t know where we were in relation to the Twin Towers. We were at West 4th Street. The fire alarms went off. Out of the building we went. It was a drill, there was a head count, all students had to be accounted for. No one knew if we should stay inside, if we could use the air conditioners or if we should have the windows closed. No one knew how close to the Towers we were. I remembered the drive from hours before and didn’t think it was that far. And I was very glad no one got off the shuttle there.

I still don’t really know if we saw the second plane hit live, time was all scrambled up. We watched the towers fall on the TV. We knew we had friends in places they were talking about, like Tribeca. Dan went downstairs to take a look around while I stayed up talking to Liz on Yahoo and watching the TV. He came back up and said he couldn’t see anything down Broadway so figured we were pretty much ok. I went out a while later and we walked to Broadway and he turned towards the north and said “See, nothing there.” I looked south and froze. “Dan, turn around.” He spun he chair towards where I was looking and we both stopped breathing for a minute. There was smoke billowing from what looked like just a few blocks away.

The view towards Downtown from Broadway and West 4th Street. The clouds of smoke were visible for days. Notice the Buses lining the street. They were there to go transport survivors… They were there all day with their motors running.

And it was quiet. The subway had stopped. There were no airplanes in the sky. No cars clogging the streets. We were in the middle of 3 major airports, there were always planes. Then we heard them, F-16s screaming by. And suddenly Broadway was lined with buses with their motors idling. They were parked there ready to go get the survivors and bring them out of the area. They never moved.

Cars, black cars with sirens and lights inside them, unmarked black cars all going in one direction, south. The wrong way on Broadway. Occasionally one covered in heavy gray dust would come north. People were walking with masks on their faces covering their nose and mouth. We even saw dogs with the masks on.

A car covered in debris racing up Broadway on 9/11/2001

Dan went back inside, there were obviously no classes that day. We heard that below 14th Street was closed. No one could come in, we could leave if we walked up there, but we had no ID so wouldn’t be let back into the area. That was 10 short blocks away. We were in lock down.

I walked south. To see how far I could go. As a photographer all I could think of was this was history in the making and I had to see what I could capture without getting in trouble. The Mayor said anyone below Canal street with a camera would have their camera confiscated. I didn’t know where Canal Street was from where we were. I want to say it was about 10 blocks. I walked across Manhattan and down to Canal Street. That is where I saw this.

On a fence at the barrier from West Side Highway where people were not allowed to walk further downtown was a plastic flag tied to a pole with a white plastic rose tucked in.

What Would You Do if You Won 168 Million Dollars?

The holidays are always a tough time for me but this year my daughter who lives far away has been giving me a lot of updates on how she is making a great Christmas for her son. I sent him his present early, a guitar, so I was “Done” with Christmas. I also gave a guitar to my boyfriend, surprising him in early December instead of waiting for the actual holiday.

On a message board I frequent, a member asked the question “What would you do with 168 million dollars” which was a particular lottery’s prize for I think a Christmas Eve or Christmas Drawing. Here is what I posted:

So here’s my story, I’m a little sappy tonight so bear with me 🙂 Way back when I was a single mom of teens the lottery started being pretty hefty now and then. So when it got really high we would play a few dollars and talk about what we would do with the money if we won:

Don’t tell our friends (which like now are far flung around the country, back then mostly east coast) – then surprise them by having a limo show up at their houses and take them to a plane that brought them to a party catered by Emeril Legasse, probably in NYC since that was where he filmed his show. They wouldn’t need to pack because we would have them in a nice hotel with everything they needed.

Next we would create a foundation that would fund several projects:
Research into their own medical condition (Spinal Muscular Atrophy)
Research into cancer treatment and cures (My sister died of lung cancer – very quickly)
Scholarships for young writers and actors to go to good schools and get grants for writing

Since Dan was a writer and Chris an actor, we needed a completely handicapped accessible home in NYC and LA, with lots of room for friends to stay with them.

And finally buy a private plane that accommodated them to sit in their wheelchairs during flight so they could fly cross country easily without their equipment being damaged by baggage handlers and waiting for literally an hour or more after a plane landed to get their wheelchairs brought to them. Ideally their custom van could fit in the hold of the plane so we had transportation at the other end.

Would I give up working? No. I would always be a photographer and an educator. I would have also been the person managing the foundation.

Since the boys are gone (Dan died in 2002 and Chris in 2006), I would now just want to create a foundation to fund the projects that the boys believed in, put Liz in charge and spend my time helping small businesses, mostly artists and photographers, get started. Many times I’ve been told I should create the next great POD (Print on Demand) company. But I think that would take more than 168 million. I would also be sure to send anonymous gifts and messages to people that needed them. I’m a big believer in anonymous acts of kindness, because after my sons died, especially after the shock of Daniel’s death in a car accident, there were many times that out of no where someone sent an anonymous card, sometimes with a small gift, sometimes with a memento, sometimes with just a message that I was in someone’s thoughts.

My Christmas wish is for someone that will be able to appreciate and enjoy that amount of money win it. Too many people become instant millionaires and are paupers again just a few years later. It isn’t money that buys happiness, it is what you do with it that does.

Some days are still really hard…

Today is September 18, 2009. Tomorrow my son Dan would have been 29. In the Septembers since he died (May 2002) I have had a variety of emotions. Some years I can celebrate and be glad he lived his life at all, other years I wonder what was the point. The first birthday after he died was the hardest. We won’t go there but know that I was smart enough to know that I needed to have people on alert to come to NYC to take care of Chris (Dan’s older brother) at a moment’s notice in case I felt the need to check myself into a safe place. I am not ashamed to admit that there were very, very dark days that first September. It was also the first September after 9/11 and even though I didn’t lose anyone that day, that day changed the direction of my life. But that’s a post for another day.

Chris was unhappy that I was unhappy because even though he grieved the loss of his brother, he also felt it was his responsibility to take care of *me* and felt he was failing. Grieving is not easy to explain and is different for everyone, and I tried to explain that to him. I worked for a doctor’s group at the time, so I was on a variety of medications, had started counseling and was “doing all the right things”. But I was overwhelmingly sad. Counseling helped, medications made me insomniac and zombie like. That September I found out what a nervous breakdown was. People talk about them all the time. Most never really experience one. Ok, so maybe we will go there. I started this post to just express that this year his birthday is pretty difficult again, not nervous breakdown difficult, but just difficult. Instead maybe I need to talk about that first birthday so that other parents that have lost a child unexpectedly can understand that it gets really bad, but then it gets ok, and then sometimes it’s bad, but never “that” bad again. Your child wouldn’t want you to “go there” repeatedly.

Daniel and I had a special bond. He was the baby. He was brilliant. He was intuitive. He was an old soul. Elizabeth (his oldest sister) understood it and was not jealous or offended. Chris knew it and acknowledged it begrudgingly. He knew he was special too, each in their own way. When I was pregnant for Daniel, I had been married for a few years, had Liz and Chris close together, then a miscarriage because of an illness. Stress had started to erode the marriage. Lots of disagreements, but I was the “good wife” and tried to keep things mostly to myself. My husband was possessive and I knew if I divorced him, he would try to take my kids. Daniel would be my child I told myself during the pregnancy. If my husband took the other two, I would have Dan.

I didn’t leave my husband while I was pregnant, nor did I leave him while the kids were young. I had a way to cope, I had children with health issues that took up most of my time, I was a wedding photographer and was out working on weekends. He worked evenings so there wasn’t as much stress, at least not too much to not be able to handle it at the time.

Dan was demanding, but not in a bad way. He didn’t sleep at night, his brother and sister had to be up for pre-school, so I basically lived on coffee for several months, in a rocking chair or with him in a sling. Liz and Chris were happy in those baby swings, where they would play and sleep and rock. Dan needed to be held. It was ok, it’s just the way it was.

Life happened, I got divorced, my kids had special needs so I was never far from them. Liz went off to college, got married, had a baby. Dan went off to college, Hofstra, for a year on his own. Chris and I still lived together, showed cats, he went to community college and acted. Then summer 2001, Dan got accepted to NYU Scriptwriting program, Chris got accepted to Hofstra. Wow, my kids would be all away from home. And I had to move because of it, but again, a story for another day.

Our Septembers, as a family, always started with volunteering for the local Labor Day Telethon. Our family was deeply involved with fundraising for MDA. Another facet that made Septembers hard later on.

Summer 2001, I had to move 2 handicapped young men to two different colleges. Because Dan had already been to Hofstra, Chris was all set with Dan’s old room, and an aide to help him out. They couldn’t get out of bed themselves, nor could they get themselves to bed. This gets to be important. Dan at NYU we thought was also all set, but when we got to the dorm, they had no clue what we were talking about. Aide? What aide? So I had no choice but to stay at the dorm “for a couple of weeks” while they figured out where to get him an aide.

Then 9/11 happened. Suddenly the health care folks in lower Manhattan had other worries besides finding an aide for a young man at NYU. So my life changed. I lived in a dorm room with my son for 9 months. Again, another story for another day.

So Septembers have some issues for me. Mixed joy that I had a beautiful son born to me in 1980, and the pain when that day comes each year and he is no longer here to celebrate it. The memory of many family activities that we did each year, the pain that we will never do them again.

I guess the point of this post is that there is no point. Some years I can breeze by his birthday with a tip of the hat and do something special (one year I sat in a hotel room and read all of his movie scripts and plays that he had written, some for the first time, others for the 10th. Some I had “written with him”, participating in the the writing process, others just knowing bits and pieces). Other years I can’t function, I can’t breathe, I can’t believe he was taken from us.

Chris died quietly 3 years after Dan. I had the same reactions after Chris died, but accelerated. A nervous breakdown, but no meds and no formal counseling. They didn’t work the first time. Friends got me through the dark days after Chris died, because Chris had gotten me through the dark days after Dan died. After all, I still had Chris to take care of. When Chris died, I had no one to take care of. Liz had her own family. She needed me as a Mom, but not like her brothers did. And she understands. She feels it too. She had a special bond with her brothers too, and especially with Dan. There was something about him….

There still is….

(this is one of the unhappy years, even though I have great friends and a man that takes great care of me, there is no accounting for grief and what it is going to do and when it will pop it’s head up.)

Hope my rambling somehow makes sense and helps another parent feel better, or at least not feel like they are alone in their grief.

The worst thing people ever could say (including Dan’s dad) is “get over it, move on, the past is done”.

This year his birthday is also Jewish New Year. Maybe tomorrow will be better than I think and today (this week actually) is just a “bad day”.

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