Tuesday, March 20, 2007

Painful.

Today was the latest step in the process of closing out Jesse's life. It's hard not to feel like I've violated him somehow, during the process of reading through his mail and his files, finding his accounts and debts, having myself made essentially the executor of his estate. Sitting in the administration office in Surrogate Court crying my eyes out filling out forms. Crying as I called and visited the banks and loan companies. Crying in the office of the notary public, of the bank officers, in line at the customer service desk. Crying when the checks came. But this morning I had to put the checks in my bank account so I can pay off his debts. It wasn't till after I was done, sitting on a park bench with my husband, sobbing, that I realized the sun was warm on the melting snow, that Jesse loved to walk outdoors, that he and I were too far apart when he died, that everything he planned so well is nothing now.

I hope there's some money left to put in his his fund at Fordham. At least that dream of his will live on a little. If the lectures and seminars sponsored by that fund inspire just a few of the next generation of lawyers and judges to rethink how children are treated in the judicial system, maybe something will change. Maybe in the audience, Jesse's spiritual heirs will gather, and his real legacy will begin.

Thursday, March 15, 2007

Coping. Or not.

I do my crying on the way to and from work, lately. Keeps it out of the office. Mr. Nomist has been absolutely terrific at helping me through the rough spots, doing things I can't do (like emptying out my son's closet-- I mean, literally I couldn't even look at it). The hard part is how many times I have to be reminded in a day that he's never coming back, so x, y, and z don't matter any more. It's like opening up the stitches all over again each time.

Wednesday, March 14, 2007

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.

Tuesday, March 13, 2007

Unwell

2/28/07
Nothing else can be taken from him
He’s beyond all that. Beyond tomorrows, beyond forgiveness, beyond love.
We lose who knew him or who hadn’t met him yet.
We lose “I will tell him”
We lose “I should have”
We lose every promise we made to ourselves about him.


3/1/07

Last night I dreamed that I was trying to get people out of my loft. Over and over. The first dream I don't’ remember so much. There were little children involved. I woke up and had a hard time falling back asleep. The second one, people kept coming in until there were dozens trying to look at the loft to rent it. The window kept bumping open like shutters and leaves blowing over the top. Dead leaves. I was angry because I thought the landlord was trying to get rid of us and had lied to all these people that the loft was available so they’d make me leave. At one point I had them all sit down and told them that they’d been sitting there for six hours (from six am to 2 pm by my watch), and the landlord had never showed up so that proved I was right and they needed to leave so I could go to work. Then I woke up.

The third dream, there was a repairman, and someone else who barely knew him. I was trying to get rid of them but the repairman lay on the bed like he wanted to have sex with the other guy. I threatened to call the cops and they acted like they were joking and were going to leave. Then the other guy was sitting with me at a couch, eating gummi candy out of a gummi candy dish. The repairman made a joke, oh now you don’t want us to leave. No I need you to leave, I have to get to work. As they went out the door, Jesse was walking out, dressed to leave, behind the gummi candy guy. He stopped me in the doorway and said, Mom, can I come home now? I want to come home. I could see his face so plainly, the hurt and need in his eyes. Yes, honey, come home. I want you to stay. I want you to come home. The other two left as Jesse and I sat on the floor, hugging. His shoe was off and I was rubbing his bare foot, saying over and over again, yes, yes, yes. You can stay. I want you to come home. I woke up and spent the whole morning sobbing that he could come home, yes, yes, yes, any way he wanted to come home, he could always come back. That was the first good dream of him as an adult since he died. The other two dreams had been earlier, one of him as a tiny child, a good dream. Another of him as an adult, arguing with his brother and me, hostile as he had been recently in life.

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.