Absolutely horrifying crap.

I was invited to a community meeting in lower Manhattan, for people who had lived and worked in the area before/during September 11th.

It was a smaller group than I expected, and judging from the comments, I could tell that a couple were lawyers, one was a scientist, another was either a doctor or other health-related expert, some were local residents, and some were representatives of perhaps local government, or some businesses, or maybe a union or two.

The trouble started when they hit item 3 on the agenda (formerly item 4 but they were doing me a favor), environmental issues. A sweet looking older lady stood up and told us that the week before, a fifteen foot steel pipe had fallen from the Deutsche Bank building, shot through the 6-inch thick concrete roof of the fire department next door, then crashed through the next floor, made a hard right and embedded itself in the wall. Two firefighters were injured, and the street she lived on was shut down. She couldn't get to her home without an orange hard hat (God help her if her hard hat were blue or white, I suppose).

"Guess what they did to fix the fire house roof," said a lawyer sitting next to me. "They put up a sidewalk shed."

"Yeah," said someone else, "because a piece of plywood is much stronger than six inches of reinforced concrete."

I was surprise that some of the attendees actually started to laugh.

"Can't we do anything about this?" said the lady, a little desperate.

"Right," (the lawyer) "The site's run by the Gambino crime family, what can you do?"

A guy who seemed to represent the workforce spoke up: "But there's a clause in their contract that forbids them to engage in mafia dealings on the premises!" (more laughter, as he showed us the clause that shows the Gambino (Safeway) subsidiary, Gault, is barred from acting like Gambinos.) "LMCCC even has pictures of the site on their Web page, showing the violations, like they're proud of it!" (holds up pictures. More laughter.) [note: the photos he was showing us were off the web site as of the middle of last week.]

"Well, can't we get the board to fire them?" (More laughter)

"The board is full of their friends!"

"Then we should get the governor and mayor to fire the board!" (more laughter)

"They appointed everyone on the board. Look, as (name left out) said last time, if you want to hire a contractor in this city, you're either going to get a firm with an Italian last name, or a big national firm-- like Halliburton!" (rest of audience laughs even harder.)

"well," says the defeated sounding lady, "Would OSHA help us?" (Pandemonium. She shuts up.)

The labor guy says, "I've personally looked at what's now thousands of pages of data on that building, and according to every test that's been done, there are no hazardous materials in the site." (Astonishment. Everyone here knows that there were bones and body parts being found in there on a daily basis, that the roof had been torn apart by the collapse of the trade center, and that all the airborne pollutants (asbestos, silica dust, human dust, smoke, jet fuel and so on) had rained down into the place just like the rest of the area.)

Now it's my turn to get up. I tell them my son's story, briefly, and refer them to the resolution they had just drafted, regarding PAHs (polycyclic aromatic hydrocarbons) in the WTC plume, you know, carcinogens. Even if there's no causal relationship, I tell them, if there's an uptrend in responders, there's going to be a similar uptrend in residents, and that means people will need to be educated about the symptoms. A week's delay can mean life or death with APL.

The lawyer stands up and gives a rousing, self-aggrandizing speech urging political action to force the state to do autopsies on everyone who dies in the downtown area, to find out who had undiagnosed leukemia. An aging neighbor with an oxygen line in his nostrils agrees and argues for an ACTUP style response. The lawyer says, "And our slogan should be "Don't bury the evidence!" And the old man says, "bodies are dropping!!"

Jesus. I'm sitting right next to you, assholes.

All I wanted was to encourage community groups to educate the people in their neighborhoods about the symptoms of leukemia, to get tested early and often, to save lives and to make sure that the recorded incidence of leukemias is as accurate as possible, to help us with government funding and education. All I wanted was to protect other families from losing their Jesses. What I got was an ugly picture of what happens when dozens of well meaning folks have been banging their heads against a brick wall for six years. What choice do they have? I don't know that I can do what they're doing.

The very next day, Community Board One passed a vote of confidence in the demolition process at Deutsche Bank. What the hell?

The letters are so hard to write, even now.

(to a friend of Jesse's who joined the Coast Guard search and rescue team after many long talks with my son)
Dear D--,
I’m sorry it took me so long to write back to thank you for the beautiful letter and essay on Jesse’s funeral. I thought you captured the spirit of it perfectly. You have a lot of writing talent—it isn’t easy to write from the heart and yet write well, but you have done so. I have it hanging on my office wall and read it and your letter from time to time. They comfort me.

I am so glad you were in Jesse’s life, and so thankful you and your dad came to the funeral, but mostly I am grateful you spoke to me about your friendship with Jesse and his influence on you. It made me feel closer to him, and close to you and your family that day. As the months go by and Jesse’s time on earth moves farther and farther into the past, it’s the friendships he kept and the memories we all have of him, and that you have shared with me, that help me feel a little bit that Jesse is still around.

I don’t pretend to know what happens after we’re gone, but whatever it is, I think we can be assured that if it’s something complicated or hard to navigate, Jesse will be there waiting for all of us, teasing us for not figuring it all out sooner, but ready to explain it all and get us where we need to go.

A huge part of my life is gone. Jesse changed my life in so many ways, from the day he was born, and all of it for the good. He remade me as a mother, taught me what is valuable in this world, and gave me the strength to do things I could never have achieved on my own. We had our rocky times, but I think given time, we would have worked it all out. I found myself through mothering him, and because of him Jody was made possible, too.

Sometimes I recall moments in his life, things I taught him, things I showed him about the world, and I realize I was trying to build something for him, a way of looking at life, a way of thinking and conducting himself, of always learning: about everything, including who we are and why we’re here. I wanted him to feel a sense of wonder, but temper it with a healthy bit of skepticism that might tide him over until wisdom arrived.

And then I think, oh where did all his memories and thoughts go? Because I’ll never know now if he would continue to love knowing the names of trees and birds, to see life as an adventure as well as an unending education. As a gift to spend wisely on loving and caring for the plight of others. I regret that loss of his future more than anything. He had the right to know what happened next in his life, and it’s unfair and cruel that this right was taken from him. I know so many mothers and dads all over the world are thinking this sad thought about their sons and daughters even as I write this and sad as it makes me for my partners in grief, it makes me feel less alone, and less cursed, as if this most horrid kind of loss were the most natural thing in the world. It’s only the modern-day illusion of our children’s immortality that makes us think otherwise.


It’s a harsh fact of human existence that parents have lost their children throughout history, often for the stupidest, saddest reasons. But I can’t be angry that he was taken from us so young, when I think how lucky we were to have had him in our lives at all.

I hope you and your dad are well, and I want you to know you are welcome at our home any time. Thank you both so much.

Someone Else's Jesse

This morning as I was heading down into the subway, I noticed a man hunched over on the sidewalk, on other side of the metal banister, peering in at me through the bars. The man was in pretty good shape, tight t-shirt to show off the muscle, decently handsome in a boyish way. And too sick to move.

He was dripping with sweat (it was 70 degrees out), and pale under his light-black skin (not quite ginger but light enough that you could tell the blood wasn't in his face). His lips were quivering. I asked him if he needed a doctor. He said, "N-no?"

I didn't believe him. Back up on the street. I asked him if it was ok to feel his forehead. By now a crowd was gathering. His MacDonalds breakfast was still neatly balanced on the top of the banister rail, but he was looking worse with every second. He nodded about his forehead. Clammy. His arm was cold, but I felt the need to comfort him somehow as I told him, "I think you do need a doctor, I'm calling 911." "Ok," he said. He looked so young and lost, his whole body shivering now. A MacDonald's manager had come out, and wanted him to come sit inside until he felt better. But the guy could not stand up, even with all his effort. "Don't try to stand up," said a Caribbean sounding lady behind him. "I know you want to but it's better if you don't."

She gave me a look of relief and then approval when she realized I was calling for him. Waiting for the 911 operator to pick up (luckily no elevator music on the hold button), I asked his name. "Damien." The operator wanted to know what color he was: black; how old he was (I asked him)

"Forty-one."

Astonished, I asked him again, thinking he'd said "twenty-one" and I'd just misheard. I stifled that crazy ADD instinct to blurt out some clumsy compliment, and tried to relay the information about where we were and his symptoms. I wasn't putting it together. He's, he's talking, he's lucid, but..."Park Avenue? Park?" She kept asking. Finally she said, Ohhh, Park Avenue South. And in saying yes I managed to make that one syllable sound like "yes I am an idiot," maybe telepathically. She patched me through to EMS but by now I was talking too much. He's sweating, he's clammy, he's shivering, he can answer questions, he's lucid...Slow down, she kept saying. There was something about his symptoms I couldn't quite put my finger on (all you medical geniuses out there, shut up). I knew this. But all I could tell her was that he looked like he was having some kind of "reaction." Finally she confessed she was sending an ambulance, and I realized I was going to be late for work.

The Caribbean lady was still there, talking to Damien gently, more or less on the same lines as before. She had that grandmotherly, schoolteachery look with the long skirt and neatly pressed blouse. The kind of person you'd hire to watch your kids without even calling all her references. "Can you stay with him if I leave?" I asked her and she nodded. I couldn't tell if she was smiling, but she kinda was. Like she knew what was happening to him, and he was going to be ok. I couldn't bring myself to believe her. Down in the station, I fumbled for my card for a few minutes before I realized I was holding it in one hand already. The train was coming, but as soon as I passed the turnstile I wanted to run back up and stay with Damien until the ambulance arrived. Guilty, guilty, guilty. Nothing could convince me I was doing the right thing by moving on. I even prayed to God to keep an eye on Damien, then I realized God's pretty spotty in that business. Thy will be done.

I'd given EMS my phone number, and I hoped they'd call me, but they didn't. It was hard not to clog up 911 trying to get news of Damien, but I managed. It wasn't till I got to my desk that I realized he was showing every sign of insulin shock, and what I should have done (I'm an idiot) was send the MacDonald's manager back in for some orange juice or a coke. Then I had a flash of his mom not even knowing her son was on his knees on a filthy sidewalk in the middle of rush hour. I'm an idiot. I should have stayed and called whatever number he could give me, and whoever in his family picked up, they could have told me he was diabetic and to get him something sweet. They could have had a chance to come get him, and protect him till the ambulance came. Luckily, there was this Caribbean lady who looked like she knew how to take care of someone else's child.