confession

In my ideal life, right now, I would have time in the morning to scribble down what comes to my mind on waking. It's the time when my mind is least inhibited by reality, is beyond it; when what I think is most likely to be creative and weird and free. I always think I'll remember to write it down, but I never do. By the time I get to work it's gone, the colors all have run together, the shine is off the shiny parts, and I am once again the automaton that earns my keep. I have to make myself be less alert, I guess.

Was chatting with a friend about risk taking when the risk is small. Another chimed in comparing drinking tap water to the higher chance of getting hit by lightning.

Lightning is nothing compared to regret.

The second summer of my first marriage, my husband and I started an interior renovation company. One of our clients had a lovely brownstone in Brooklyn that we were restoring. The kitchen had maple cabinets, which I spent the spring stripping and refinishing. I knew the label on the Zipstrip had warnings about benzene, carcinogens, open ventilation, and masks (I wore one but not a gas barrier). I mostly stripped outside, but I saw those warnings as overblown as the warnings on Sweet n Low packages. I figured, I'm never having kids, I'm not pregnant, I'm only doing this for a few days, I'm not a rat being injected in lab with 10000 x the possible lifetime dose...

Two months later, I got unexpectedly pregnant.

Twenty-three years later, I paid the price for my assumptions.

People tell me it's impossible, or at least highly unlikely, that this is the cause of Jesse's APL. I do searches on this topic every few months. I tend to look for blame ("something I did" + "APL" + "young adult" = not objective research).

The debate changes direction a lot. It's gone from an assumption that this only happens to children or the elderly, to the present evidence that it occurs most often in young adults; from arsenic as an old wives' tale to arsenic being the answer -- the doctor who treated Jesse in Chicago has his name on much of the US research on this particular form of leukemia, and the research is confined to populations as small as ten. They have to group it with other classes of leukemia to raise a population into three digits. Too much they don't know.


No one knows how long it takes for one misfolded gene to go crazy. Six cases for every ten million people.

I know the jury's going to be out re: causes of leukemia, especially one as rare (and curable) as APL. That's how science is. But my larger point is that ignoring a risk because it's relatively small can be painful, not just because of what could happen to you; but because when something does happen, at least you'll know it wasn't because you were drinking poisoned water.

Someone at work once said he had a mother-shaped hole in his life; for me, it's a Jesse-shaped Something. Not a hole, the opposite. Love is an easy term for it, I guess, but it really doesn't express this. This consuming wave of longing, guilt, regret, joy, love, relief, respect, pride, nostalgia, this unfinished song hanging in the air. This never ending grief.

Today is the last day,

two years ago, that I saw Jesse alive and conscious. I was coming down with a cold, and he already had some kind of stomach infection, so I had to leave him at the hospital for the weekend. He really didn't want me there when I was sick; and we'd gotten him his own private room at last. He seemed happy about that. Friends were coming, he would see his high school buddy Alex on Monday. I talked to him on the phone a few times over the weekend, and he kept telling me not to worry. To call the school so he could take his classes from the hospital. Then came Monday morning, the phone call from the nurse, telling me to get there immediately. I can still feel the tone of her voice, the shifting emotions as she realized I didn't know what she meant. As she realized she had to tell me somehow, that it wasn't just some passing event. This was it. He would never see me again, or speak to me or any of us. These memories are still rough to the touch, and I know one day my fingers will slip over them like glass beads on a string, worn smooth by the telling of these prayers to the unforgotten.

I'm glad it was a crappy day out. I'm glad my boots filled with slushy water and my pants were soaked when I got to work. I'm glad it's going to stay like this, get worse, be colder, and dark soon. This is how the weather should be today.

Lave a mano

...she said, mimicking handwashing the sweater. We were standing on the corner of Broadway and 8th, it was sunny but too cold for a toddler, and the hand knit sweater was Jesse's size. And wool. Bright blue, darker than the sky. On the chest was an applique merry go round with little cloth dolls sewn onto the horses. The kind of thing I would have loved at two, myself. Expensive for me back then, $25. It had probably made its way up to New York from somewhere in South America, but I don't remember any more and now, anyway the tag is too faded to read.

It was seldom cold enough for him to need it, so it never saw much wear. It still looked new when I opened a box today, marked baby clothes. The worst though, was the little stuffed-tiger headed slippers I'd wrapped in a plastic bag -- long forgotten that I'd done it, kids size 5-6; I nearly doubled over. I sat down and dumped the whole box out onto the bed, wanting to get it all over with at once, like ripping off an enormous bandaid.

Time goes by for all of us. Everything changes. The baby is gone, no matter what happens to the man. I buttoned together a little onesie, and realized I will never do this for my own child again. I'm fifty. That part of my life is over. How do I let go of it? Long before anything had happened to Jesse, just after my new husband told me that he'd changed his mind, and didn't want to have a child with me (despite what he'd said repeatedly when we were dating, when I asked, when I told him that's what I wanted)I told him, if I lose one of them, I'm going to have another. I must have had some idea. Maybe just knew that I don't get to go through life unscathed. No Hail Mary pass gets me safely to the future. That's never been the life I had.

If I were to write a play about this, act two of my life with Jesse would have begun with the phone ringing on June 10, 2004. "Mom, don't freak out.... I have leukemia."

Could Jesse's leukemia have origins in the WTC disaster?

We lived close enough to the site that when the planes hit, I stood on our avenue and watched our national nightmare begin. Jesse was stuck in the Bronx that night, staying with friends from school, but over the months afterward we were all experiencing smoke and dust in the house, on the street, everywhere. The Armory right near us was a base for the responders. My younger son wore a face mask every day until the fires had died down, but I don't think Jesse did, especially after the first few days. I don't know how close he ever went to the site, I don't even know if he ever went down and volunteered. It'd be just like him to do that and never let on to anyone what he'd done to help.

If what Mt. Sinai suspects is true, and more and more people are going to be contracting plasma cell cancers, including APL, then New York and New Jersey need to know the symptoms of leukemia so they can get early treatment. Our doctors in Chicago called it the "good" cancer because there is a cure. The hitch is, if you don't catch it in the first week or so, you die of it. Jesse first noticed possible symptoms of a relapse around January 9th. He didn't go to the hospital until January 16th. Could that week have saved his life? I'll never know, but you can bet that I'm going to find a way to make sure Jesse's story saves someone else's life if that's at all possible.


Third wave of ills from WTC seen
Mount Sinai docs fear new cancers
BY JORDAN LITE
DAILY NEWS STAFF WRITER
Thursday, May 31st 2007, 4:00 AM

Responders to the 9/11 terror attacks could face a devastating "third wave" of illnesses - blood and lymphatic cancers - related to their exposure to Ground Zero air, says the director of the largest treatment program for those workers.
Though many scientists have cautioned that it's too soon to link cancers to toxins at the site, doctors at Mount Sinai's World Trade Center medical monitoring program are now seeing surprising cases of plasma-cell cancers in people who were there, said Dr. Robin Herbert.
"We know we have a handful of cases of multiple myeloma in very young individuals, and multiple myeloma is a condition that almost always presents later in life, so that's the kind of odd, unusual and troubling finding that we're seeing already," Herbert said in an online audio interview in advance of today's issue of the New England Journal of Medicine.
Doctors at Mount Sinai are trying to verify cases of leukemia and lymphoma reported by any of the more than 20,000 responders they've examined, she said.
More than 120 people with those cancers are part of a class-action lawsuit alleging negligence by the city and its contractors at Ground Zero, said lawyer David Worby.
"People are afraid of the C-word, cancer. It's taken hundreds of people getting sick this way for Mount Sinai to say, 'We are more than concerned,'" Worby said. "Washington and Mount Sinai should draw up an entire platform of blood tests and precancer tests."
Herbert was unavailable for an interview, but in the Journal she described three waves of post-9/11 illnesses.
The first was the stubborn, dry "World Trade Center cough" stemming from pulverized cement there and seen in the months just after the disaster.
The second wave involves chronic respiratory diseases that cause lung inflammation and scarring.
Cancers could be the third wave among responders exposed to asbestos, dioxins and other carcinogens at Ground Zero, Herbert said.
Although the "full range" of those toxins will never be known, "you really worry when you have a mix of chemicals about the possibility of [a] synergistic effect," she said.
jlite@nydailynews.com

As if I'd just written it:

3/2/07

I look for you everywhere. I know you’re not there. I hear your voice calling me, but I know it’s only a memory of all the times you’ve called me Mom. If I can’t find you, I want to find people talking about you, telling each other about you. How much they miss you, who you were to them, who you told them you wanted to be. I want to be as close to you as we were when you were little. I want you to sit beside me and neither of us be afraid or angry or hurt any more. I know you’re gone. That there’s no way to know where you’ve gone or if in any way you exist as yourself any more. I understand why people need to believe in that other place. Because otherwise, how do we endure the pain of this loss?

“I’ll carry you. I’ll go from world to world until I find a time and place when you can come awake in safety. And I’ll tell your story to my people.”

This morning your brother told me that it was easier to handle his dad dying than you. Because he said no one cared about his dad dying—he meant you, me, Dan, the people he knew. That your dad didn’t have friends. That I wasn’t affected by his death the way I am about yours. Reminding him of the loss by my grief.

Even now I feel myself in the middle of a conversation with you. Things we had talked about in the hospital, that I meant to follow up on, that I wanted to ask you more about. That should have been different. The infection, the fever, but that didn’t kill you. How strange and terrible it was that it was a brain hemorrhage. None of it seems real. That you are gone, although I saw it all. The way you went, although I can’t deny any of it. That I will never see you again, although I know this is true.

3/5/07
Do you know how much I miss you? How many times I think of you and the shock of it hits me again, wracks me physically like a hand tearing out my chest? I’ll fight thinking of your face, in laughter, in anger, in death, because it makes me want to die, too, to stop this pain. This weekend I started saying good night to you at night, and good morning when I wake up. I think it might help to pretend a little that you are still here somehow. There were plenty of times since you moved back home that you weren’t so glad to see me, that there was nothing to look at but the closed door, but still I was glad. Happy, joyful that you were there, home with me, safe. I didn’t care. I didn’t know how soon it would end, but I am glad, glad, glad that I had those months. I’ve put up pictures of you everywhere I look, so I’ll get used to it. So that the thought of your face doesn’t waylay me and destroy me every morning. So that the idea of your death no longer rips at my gut.

3/6/07
Last night I received a book in the mail. It was a nice new hardcover copy of Ender’s Game, the book I took your memorial quote from. Inside was a note from Card’s wife Kristine, explaining that they had heard about you and your card quote from somebody at my old job. Card had inscribed the book to me, a sweet paragraph about loss of a child and his being glad we found some comfort in that quote. You would have loved it.

I realized this morning that one thing that makes it so hard to “put you away” so to speak is how incredibly angry you would be to see me/us doing these things if you were alive. I feel like I’m violating your privacy when I open your mail, go through your computer and check your accounts and debts. It makes me sick thinking about what it means: the finality of it. That you will never come back for these things, or to hold me accountable for what I’m doing with them. Oh GOD how I wish you would. I wish there were some way you could just let me know you’re ok, you forgive me, you accept my forgiveness, that we are ok, that we are at peace with each other at last, not simply because you are gone forever.

I realize that part of what makes this so hard is that I can’t just ball up everything I know about you and toss it. I can’t find anything okay about losing you. Tomorrow I’m going on Prozac. I hope it helps me through the worst of it. You know, at some point every day I find myself looking for something about you online. I google you. I reread your blog. I reread emails people have sent me.

As much as I know that it won’t hurt me so much as time passes, I don’t want time to pass, because every day is one day further away from the last time we ever talked. The last chance I had to be there with you. I try to tell myself that you are just as much in the past today as you will be a hundred years from now, but somehow that doesn’t work. I want to go back in time, and the time when you were here is so close, so close I can remember everything about it, and yet it’s over, it’s gone, and I can never ever go there again and relive those moments with you, good or bad.

The letter I wrote to his first doctor

Dear Dr. T,
I'm sorry not to have communicated with you sooner, and I'm not sure whether anyone else has let you know that my son, Jesse K. Smith, passed away from a bilateral cerebral hemorrhage on February 8th. I want you to know that your care, words and kindness helped him more than I can express, over the last years of his life.

Thank you for giving us those last two and a half years with Jesse. Without you, we might not have been so lucky. During that time, he moved in with his wonderful girlfriend, they went skydiving together, and visited several countries in Europe. He graduated from the University of Michigan, right on schedule, and eventually, came back to live with us in spring of last year, because he had realized another dream by entering law school at Fordham. Over a hundred people showed up at his funeral, some he had known since grade school, some from University of Michigan, and many from Fordham who were just getting to know my loving, witty, argumentative and disarming son.

Because of you and everyone at NWM, I had the blessing of knowing my son was home and safe for 9 of his last 10 months on earth. I could walk by his door and just smile, knowing where he was and that he was achieving the goals that meant the most in his life. Those last months before he passed on were joyful for me as a mother, even if law school was rough on Jesse.

It's painful to me, knowing that APL is so treatable, that Jesse didn't survive. But it's a comfort to know that you were there for him and me, by phone and email, so that he knew what was happening and what to do to help himself.

The only thing I would have changed would be for Jesse to be a little more "paranoid" a lot sooner about those little symptoms that meant a relapse. But even then, there's no way to know if getting into an ER a few days earlier would have mattered to his outcome. I suppose if I had any message to people in remission for APL it would be just that: "be a little paranoid!" but more so, live like Jesse did, fully and with the realization that you and your family are lucky indeed to have that second chance at life.

Jesse kept a blog about his last weeks at Sloan Kettering, if you would like to read his funny, smart and brave take on life with APL. It's called onlythingworsethanlawschool.blogspot.com

Jesse wrote in his personal statement for law school, that he felt lucky as a result of his experience with you and NWM. I am including it with this email so you can read as I did, how Jesse processed his illness, and how much you influenced him.


Thank you for everything, including your patience, with Jesse and with us.


Below is the text of Jesse's personal statement.



Jesse Smith
Personal Statement Part 1

If there’s one thing I’ve learned from life it’s that the bigger the challenges you face, the smaller other challenges seem to be. For the first two years of college I thought my life was hard. I was supporting myself, becoming an adult and making my way through school. I expected that this was as difficult as life gets, at least for a college student. After I was diagnosed with leukemia the summer after my sophomore year, my life, and my perspective, changed dramatically. While it may be surprising, the most significant change, the one that will last, is that life doesn’t seem as hard anymore.

Before cancer there were a number of stressful things in my life; I had to make new friends after moving to college, I had to deal with the loss of a parent … and I had to learn to manage my finances, all while still trying to get good grades in school. Each of these aspects of my life seemed overwhelming at the time. In retrospect, I feel that while I hate to use the word lucky, it almost seems convenient that I have had a life experience that has put all those things into perspective.

Doing schoolwork, managing finances or dealing with a personal life is a challenge for almost anyone. In my case, I was suddenly in my junior year of college, attending a full class schedule against the advice of my doctors and while on numerous inhibitive medications. In addition to what used to be my big problems, I now had to get my blood drawn weekly, learn to cope with being bald in a Michigan winter, maintain a catheter in my arm for months, and receive chemotherapy after class. I quickly realized that life was substantially easier when all I had to deal with was school, money and a personal life. In fact, few things I did before cancer seem very difficult anymore.

Not many cancer patients feel that they are lucky to have cancer. I spent at least a day in the hospital accepting the fact that I was going to die within weeks. Eventually the doctors told me I had a very curable type of cancer. This led nearly every nurse I encountered to tell me how lucky I was. For the first couple of weeks it seemed like a cruel joke. At 20 I was in a hospital bed unable to even breathe the outside air for fear I would die. I had to go through the seemingly endless nausea of chemotherapy and I couldn’t even walk around my room without dragging the IV tree that was attached to my arm, but I was being told I was lucky. Once I could accept that I was going to live, I noticed something about the other people in the cancer ward with me. Many of them would be there for far longer than I would, and many of them would not leave. I was lucky.

After that realization, I could joke about being in the hospital and used this humor to cope with my imprisonment. I made it a point to ignore some of my doctor’s advice, and even fight them in some instances so that I could feel like I was standing up for myself. I initially feared that my life would never be the same, that I would spend most of it dealing with cancer. However, I knew immediately that for me to be able to manage my situation I needed to make sure that one day my life would be back to normal again and look ahead to that day. When I became determined to fight to regain the life I almost lost, I realized that I could look forward to the day when I could go back to just dealing with school, money and a personal life. I had found a perspective that allowed me to see challenges in my life as beneficial instead of harmful.

School is still challenging and will remain so for the next three years, money is still a problem and may be for some time to come, and my personal life is still interesting at best. Nothing in those areas of my life is likely to change soon, but I had an experience that fell so far outside the range of what I thought of as difficult that I have a new perspective. School, money and my personal life are now the normalcy that I hold dear in the face of much greater challenges. The fundamental way that I interpret my life has changed so significantly, that I won’t see anything the same way again. I look forward to the day when what used to be major problems are my only problems. When I look back, I realize that I could spend my time thinking about how I could have died, or focusing on how much I suffered, but instead I prefer to breathe deep and realize the simple truth; I am lucky.

From my experience I also gained an understanding of what it really means to need help. I faced a situation where I was helpless and would certainly die without the expertise and care of others. This showed me that helping others is more than just knowing what they don’t. To truly help someone, you have to understand their experience, including what it is like to feel your life threatened, and make it clear to them that you can make things better. My new perspective reinforced my desire to practice law, since I believe the law, and a good lawyer, is there to save lives. People often need legal representation in a time of desperation and I feel that my new insight will allow me to benefit many others if given the chance. I hope that I can gain the expertise needed to make a difference in their lives, the same way my doctors did for me.

Personal Statement Part 2

In seventh grade I had my first experience as a criminal lawyer. In my social studies class, I prosecuted Timothy McVeigh for the Oklahoma City bombing. The next year I defended Andrew Jackson at his impeachment. From that point on I knew that I wanted to practice criminal law. My hero in middle school was Thurgood Marshall and in high school I wanted to be Jack McCoy from Law and Order. However, it wasn’t until the summer after my junior year of college, when I interned with a Michigan District Court, that I knew why I wanted to practice criminal law.

While working for the court, I watched a preliminary hearing for a man charged with raping his nine-year-old daughter. I watched as the courtroom was emptied so the little girl could testify without being overwhelmed. She walked into the courtroom wearing a pink dress and had her bright blond hair in pigtails. She sat down in the witness seat and could barely reach up to the microphone. After being asked about whether she understood the difference between the truth and a lie, the prosecutor asked her about what had happened the last night she had seen her father. She described how she gave her pet hamster, Buttons, some food, changed into teddy bear pajamas and got into bed. She then told the court how her father got into bed with her and the things he did to her. The entire time she was speaking, her father, dressed in a prison jumpsuit, was grimacing and shaking his head at her. From that point on I knew that for me, criminal law was about protecting those that can’t protect themselves.

This courtroom experience came less than a year after I went through a one-month hospitalization for leukemia. In that time I learned what it was like to be almost helpless. As I saw the little girl on the stand, I realized that she was in the same situation. Beyond the obvious evil of what had been done to her, she was nine years old and almost completely alone in the courtroom. Someone had to be there to defend and represent her since she could not do so herself. Most people that find themselves in the criminal justice system need serious, capable, knowledgeable lawyers to represent them. After having benefited from experts and professionals in my time of need and seeing the little girl in a similar position, I know why I want to practice criminal law. Law is a professional way that I can make a personal difference.