Saturday, December 29, 2012

How's It Going to Be?



Upon being reminded of this heartwarming story about the high school couple with Down's syndrome who became homecoming king and queen, I was brought back to a day more than seven years ago when I had to make some extremely difficult decisions.

I was 29 years old when I got pregnant for the first time. Lenny was born when we were 30. I had no risk factors during the pregnancy, though I did develop pregnancy-related hypertension later on and was put on modified bed rest until she was induced 10 days early. None of my friends had kids and I didn't know any other pregnant women at the time. So when I went in for various prenatal appointments, I had no idea what to expect or what was supposed to happen. If they said they were going to do blood tests, I handed my arm over. I tried not to read too much or get too paranoid about all of the random things that could potentially go wrong. I was thrilled about having my first child, but I didn't particularly like being pregnant. I know there are those glowing, maternal bundles of pregnant happiness out there, and I'm happy for them, but I wasn't one of them.

Then, one day when I was about 18 weeks pregnant, soon after my 30th birthday, I went on a business trip to Washington, DC. My brother lived in Virginia at the time and was scheduled to pick me up at the airport. As I was waiting for him, I checked my voicemail and there was a long, involved message from my OB/GYN. I could tell from the tone of his voice that there was a problem, even before I heard his words.

He was telling me that one of the tests I had done, the one testing for Down's syndrome, came back problematic. He went on and on about the prevalence of false positives, about how the test doesn't even test for Down's but rather for the potential of Down's, or something, but of course I didn't hear that. He said I needed to call him.

So I did. And then this tearful conversation ensued, where my excitement and happiness about my first pregnancy was torn apart, not because I would not love a baby with Down's, but because I was suddenly worried in a way I didn't realize I could be worried. What if she was in the 50% with heart problems? How would it feel to be made aware, before birth, that my child had a massively reduced life expectancy? Would we be able to take her to the daycare we had lined up, or would she need special care? What would her life be like?

Except I didn't think "her" because I did not know the gender of my child. I decided that I would have an amnio, not because I would not have the baby if she had Down's, but because I wanted to be able to plan for these potential scenarios if she did.

I had long tearful conversations with my husband, my mom, and others from the hotel room in DC. I felt so guilty admitting that it bothered me to imagine having a kid with these issues. My mom told me that you never know what is going to happen with your kids. You can't plan for anything. My guilt was exacerbated by the reminder that I was not exactly a child lacking issues. I had epilepsy, something that is potentially much more devastating than Down's. There is no "test" for epilepsy, and if there was, I obviously would hope that my parents would have chosen to have me anyway. I began to have conversations with parents of kids with Down's or people who worked with such kids, and I heard nothing but positive remarks about these kids and how awesome they were. And so, I learned the most important lesson that there was to learn about parenthood before my kid was even born.

All you want is for your kids to be happy.

It's nice if they're smart, and conventionally attractive, and all of that, sure. But you want them to have friends, to love and be loved, to just be happy. And I've never heard someone talk about a person with Down's without using the word "happy."

And so I made my peace with it, and decided to have the amnio in order to prepare for the potential problem, but also for this reason. I knew if I did the amnio that the doctors would know everything there was to know about my baby's chromosomes, and I decided to find out the gender, so that I could name the baby and feel closer to it by naming it.

Before the procedure, I had to go through counseling. I got a little angry with this poor woman tasked with talking to me about potential risks from the procedure, when I would need to make a decision about abortion, etc. I'm having this baby. I just want to know what I'm dealing with, I told her. God help me if anyone had been able to predict the shit that would go down with me and my body and my brain in this life.

The procedure was painful, and I had complications. I had cramping for days, not hours. I had to call the emergency hotline at my practice, and some doctor who was not mine answered; he was gruff and insulting, honestly. He asked me if I was having contractions, and I said I didn't know. He told me I would know. Now that I've had two kids, I know that I WAS having contractions, and I am faced with the reality that I came close to losing my beautiful baby girl just because of a test I did for something I would have dealt with one way or the other. And of course we learned that our baby was fine, and that she was a girl, and we named her Lenora, or Lenny, because that is the only name I ever wanted to give any daughter of mine.


Labor and delivery were extremely difficult with Lenny. When she was finally born, she was small. She had jaundice. She couldn't hear out of one ear. She refused to eat. In fact, she never really learned, and at 5 weeks I had to stop nursing her and I pumped exclusively until she was 7 months old and I couldn't take it anymore. She didn't even cry when she was born, and Gabe thought she had died. The doctor had to slap her to get her to make a sound. She was a runt; if she'd been an animal in the wild, she wouldn't have made it. She seemed to have no survival instinct at all.

She was perfect.

And she was so, so beautiful. One of the nurses liked her so much we thought she would try to steal her. My OB came to tell me how beautiful she was and I nodded, rolling my eyes. He said no really, I don't actually think a lot of newborns are cute. THAT is a cute baby.


And she was SO smart and SO alert that she never slept, and we had to entertain her as if she was an adult, talking to her, explaining the world to her. She barely napped; she just watched everything with those big eyes. We were exhausted all the time, for years.

She was perfect.

And so when I got pregnant the second time, after a year of secondary infertility that is the subject for another post, I refused all testing. I said look, I'm having this kid. I know now how much I'll love him no matter what. We found out his gender, which is easier with a boy, obviously. We named him. We decided against circumcising him, because I was operating under this assumption that voluntary surgery on a newborn seemed like a bad idea.

I've got to do an aside here about that. When making that decision, I was basically waiting for someone to give me one solid medical reason for circumcision. I had no feelings about it one way or the other. We are not Jewish, so there's one major reason that didn't apply to us. If people gave the reason that there were slightly higher rates of STD transmission from uncircumcised men, I would say, ok, well, I'm pretty sure we are middle class people living in a society with excellent medical care, and I can teach my son to take care of himself and even to use a condom.

Then, we would get all these bizarre arguments both in favor and against the procedure. I loved the logic from men who wanted their sons to "look like" them and they were circumcised so obviously, their sons should be too. Um, really? Do fathers and sons compare penises? And how about the part where HE IS A NEWBORN BABY? And therefore, he really doesn't look like you, in any way. By the time he's old enough to look like you, I'm hoping that you won't be comparing. And then there are the arguments about other boys teasing him in the locker room, or on the other side of the coin, how sex is better with an uncut guy, or whatever. And I said, so. I am supposed to make a decision about this surgery based on his hypothetical sex life years and years from now or with the idea of what his penis will look like when he's a grown man, though HE IS A TINY BABY AND HE IS MY SON. I mean, this from the society where parents would rather their daughters have cancer than get the Gardasil shot, because that implies an acceptance of girls' sexuality? Not interested in thinking about my tiny kid's sex life or what he'll look like naked at 18. NO THANKS.

One friend who had not circumcised her son gave me a rationale for her decision that made sense to me, though it didn't convince me one way or the other. Once Augie was born, I understood exactly what she was saying, however. We decided against circumcision because no one could prove a negative to this stubborn researcher who doesn't believe that "that's what we do" is a good reason for being one of a tiny few societies in the world that engages in a certain practice. Gabe is circumcised but he was unconvinced too, and he hated cleaning Lenny's umbilical cord so much, he was so worried about the potential for infection, that anything that could potentially cause more concerns like that was not appealing to him.

So there we were, in the hospital when I was 37 weeks pregnant, having that kid 3 weeks early, and we told the doctors we did not want to circumcise. Now, someday I will tell my birth stories, as they are both pretty damn good, but not today. Labor and delivery with Augie were so comparatively easy. He came into the world screaming, pissed off, started nursing furiously right away, scored off the charts on his APGAR and had absolutely nothing wrong with him. I'm still convinced he was born early because he was sparing my bum hips the 8 to 9 pounds he would've weighed if he had gone to term.


My friend's words came back to me when the nurse held him by the scruff of his neck, like a chicken, by the scale. There's my newborn son. He is perfect. How could I cut him?

After roaring into the world, he promptly fell asleep and stayed that way for about three months, apparently saving up his energy for later.


We didn't know what was coming that day, with him, with Lenny, with me. We did not know what to expect. We did not know how they would be, or how we would be, or, in my case, IF I would be, at least not for the long haul. And this long, long story is just a way to say that I am glad we took it on faith, and loved them, before they were born and after. I'm glad we were able to see them the way they are, the way this homecoming king and queen's parents see them, because it's the truth.

They're perfect.



In the first picture above, that's Augie on the left, Lenny on the right.




Friday, December 14, 2012

No Words

I have no words that are adequate to describe what any parent, any person, any rational human being feels about the tragedy that unfolded in a Connecticut elementary school today. I have not watched the news. I have read a few articles about it. My mother called me to inform me right after it was publicized, telling me "you don't want to know this." And I didn't. I couldn't think about it right then, or at least I could not think about it in relation to myself or my own children. A few hours later, I sat here crying.

I hardly ever, ever cry.

And I don't know what to say.

I just deleted three paragraphs of text about my kids, about this day, about the comfort of normalcy, even when normalcy is getting as angry as you ever get at your 3 year old son because he is completely, wildly out of control and misbehaving at the CVS minute clinic where you spent the evening, only to find that three of the four of you have strep throat.

But that didn't seem right. So I'm going to talk about guns.

I am sick of hearing that such a conversation politicizes something personal and tragic. There is nothing personal about killing 27 people who never did anything to you. People have the right to take themselves out, but people make terrible, horrifying decisions that impact the lives of other people and sometimes, some awful times, take the lives of tiny children. Children who spent the last short minutes of their short lives in terror, probably asking for mommy or daddy.

There is nothing personal about living in a city that has 500 homicides a year, most of them via gunshot, of living in a place where it is not uncommon to hear of a dozen people getting shot in 24 hours.

It is not personal. It is political.

I won't get into the fact that the founding fathers did not foresee the kind of weapons that we have today, nor, probably, the kind of lunacy. They did not have media nor copycat killers. They also did not all agree on the right to bear arms, which we often conveniently forget. And as a collective, they upheld slavery and believed that women were not full human beings. So perhaps we could stand to modernize their words.

If now is not the time to do something about this problem, then when is the time?

Close to 11,000 people are killed with handguns in this country every year.

How many people successfully defend themselves with weapons? How many lives are saved in the name of self defense? I would like to see one legitimate statistic on that. I doubt it is in the ballpark of 11,000.

It is unconscionable.

If people are going to judge me for being too political, or hate me, or change their opinion of me, then I will offer a quick solution to that problem. I will do what I am good at, and tell a personal story.

To all those who ask, wouldn't you want to defend yourself? Wouldn't you like to be able to protect yourself and your family? I have a question: Have you ever been the victim of gun violence?

Because I have.

No, I have not been shot. But feeling the coldness of metal at your temple, while a scared kid tries to decide whether to pull the trigger, still qualifies.

I was 24 years old. I had been dating a 28 year old man for a few weeks after he pursued me for a few months. He was the second person I dated, and the first person I slept with, after I ended a very long and very serious relationship. He was also entirely wrong for me.

He taught me that I didn't know how to date. I was so used to being independent, so used to the total lack of jealousy and the comfortably separate lives that my previous boyfriend and I had shared for all those years, that I didn't know how to be normal, to live by the rules men expected women to follow. After all, the last time I had really started dating, I was all of 17.

So, when I was invited to a colleague's birthday party, a lively affair at a sushi place one Saturday evening, I did not invite my boyfriend. This was not out of spite, nor negligence. I just didn't think he would want to go, since he didn't know anyone, and, well, I kind of wanted to go by myself. He really wanted to see me that night, so I said we could meet up afterwards. He sounded hurt, but I was clueless. I did not understand why that would bother him.

In his doggedly pursuant fashion, he met me at a bar after dinner, we had a drink, and he proceeded to escort me home on the Green line. It wasn't very late; maybe 10:30, and I had not invited him to spend the night. We were not sleeping together yet. It still amazes me that he did those things in those early days--escorted me home, hoping he would be asked to spend the night and yet not expecting it, and then taking two different trains home to his own place.

We boarded the train, which only had two cars running. There were maybe 8 other people on the train car. We were the only couple, and the only white people. Those things became relevant later, though neither of us noticed at the time.

At one stop, two young men, the oldest no older than 19, entered the train. As soon as they got on, they cocked their guns. Everything on the floor, they said. Money. Phones. Now or you gonna get it. The older one was laughing, acting as if he did this every day, because, well, he probably did. The other one was younger, and terrified. He was shaking, his hand was faltering with the gun.

He was, obviously, the one to fear. The one who might make a mistake.

He was also the one who walked over to us.

Give me your bag! he was screaming at me. I slowly started to hand it over. No purses, bags, or wallets had been stolen at that time. Only cash and phones. What's this, what you got? He was rifling through my messenger bag, pulling out some insufferably nerdy novel or whatever I had in there. I told him to just take it. I had my hand in the bag, and I slowly removed my keys, because I didn't want them to have my address and my keys; that was, bar none, perhaps the dumbest thing I've ever done. He didn't notice, luckily. He started getting more agitated. I was terrified of my boyfriend's potential reaction. He was a tough guy, a guy with quite a storied past, a guy I didn't know well enough to trust in that situation.

He looked at me but didn't move. He handed his wallet over when asked. Then, things got more interesting. The kid put the gun close to my head. He was playing cool, looking at his buddy, trying to look like a big man.

What you gonna do about it, white boy? What you gonna do?

There was the gun, metal and all, right there. At my head. Right there.

My boyfriend shook his head, and said, take it all man, take it. No one's going to stop you. You shouldn't do this man, just take it.

And he did.

This all happened in one El stop. They exited, we all looked at each other in shock. The entire train car had just been robbed, I had been threatened, this was some crazy shit. I said that we needed to call the police. Interestingly, a few other guys got off the train as soon as they heard us say that. They had looked terrified too, and they had lost money, but you know what?

They, also, had guns, I'm sure. Lots of people do, when riding lonely trains through the west side of Chicago alone. And they didn't want to mess with the police. I will point out that they did not have the time nor inclination to use those guns to protect even themselves.

As an aside that is not really an aside, I will point out that young black men with gang affiliations are by far the most likely victims of handgun violence in Chicago. Someone fitting that description gets shot in Chicago almost every single day. Probably all young men in gangs pack heat, right? And I have yet to ever hear a story where one of them is able to stop himself from getting shot because he too is carrying a weapon. Not when it happens in the 60 seconds it takes to get from one train stop to the next, not when someone drives their car down the street, rolls down the window, and you don't even have time to pray to God before you're gone.

But I digress.

We told the driver of the train what had happened. She was maybe 22 years old, and way out of her league. She called the police, who made the brilliant decision to meet us at our train stop several miles away, ensuring that they would never catch those kids nor get my bag out of whatever trash can it was lying in right outside the station. They also were weird when we saw them, unsure of how far west we were when we mentioned the train stop where it happened, talkative and almost uncomfortable. They made jokes about how we would never take the train again, right? We responded that neither of us had a car, so, actually, we would be back on the train on Monday. After a long interrogation period, they asked if we would like a ride home. Well, since we don't even have a dime between us, we have no phones, and we've just been robbed at gunpoint, we would rather not walk, officer. And then, upon arrival at my apartment building, they asked us this:

So, did anyone get shot or anything?


And I couldn't help myself. Do you think if there were people bleeding to death on that train that I would have been talking to you about the contents of my bag? They glared at me, I left the car, and there was no mention of an entire el car of people being robbed in the news, and nothing ever came of it. About two months after we had broken up, some officer called me to ask if I wanted to look at mugshots. I didn't, since so much time had passed, and I wasn't sure I could remember.

That night, I let my new guy spend the night.

In the back of my mind, I began to wonder more and more about him. I could not shake the memory of him explaining in exact and almost disturbing detail the make and model of the gun. Because he knew about that. He seemed almost excited by the story.

But here is the punchline: It is probably because he did not attempt to "man up" and protect me that I am still alive. He did everything right. He looked down at his hands, gave in to his own impotence in that situation, and that kid with so much to prove took the gun away from my head.

We were both scared, and angry, that night. I was paranoid the next day, but I did not experience any long-term trauma from that incident, unlike the kids who lost their innocence today. In fact, we told ourselves that our odds must go back to zero now, right? But of course we both knew that that is not how odds work.

Our relationship was dramatic, and ended badly. I found out a few years later that he had died at age 30, and I never have learned exactly what happened to him. He had told me at one point that he was in love with me. I did not feel the same, and I did not know what to say, and that is when everything spiraled downward. I didn't believe him, to be honest.

But now I know that he did love me, at least in the normal, human way that people love each other, in that they don't want to see harm come to one another.

He knew that he could not have stopped that kid from pulling that trigger by reaching for his own gun, if he had had one. Everyone on the train knew that. Maybe, if the gun had been at HIS head, he would have fought. But he didn't sacrifice me for bravado, and I will always be grateful to him and to his memory for that.

There it is. That is my story. It is more authentic and relevant than the hypothetical scenarios often thrown about in tragic times like these. And it is by experiencing that story that I can honestly say there is no scenario in which I would feel safer knowing that more people had guns, even if such people were hellbent on protecting me.

I'm sorry if this post is offensive to some, or if people think that this is a time to mourn, not evangelize. I believe it is impossible to do one without the other in this circumstance.

I cried earlier today. I yelled at my son. I listened to my daughter sing Christmas carols in her room, practicing her Elf part for the school play. I forced my husband to give in to our son's demands for his mama (pacifier), because tonight, of all nights, I could not stand to hear him cry.

I have the right to these moments. So did other mothers, who have lost that forever just because they sent their children to school. My heart breaks for them, and for so many others. But heartbreak will not bring their children back, nor stop this from happening again. Neither will prayers, hugs, or love.

If we must get into discussions about protecting our rights, fine. Let us protect the right to live past kindergarten.

Wednesday, November 28, 2012

Horny for My Creativity: Honoring Gilda

If it wasn't for the downside, having cancer would be the best thing and everyone would want it.

Here's a test. Who said that?

Gilda Radner. She also said the thing that I'm using in this post's title. If you don't know that quote, well, who are you? Look it up.

If you are of a certain age, you might know who Gilda Radner was. She was that skinny, bushy-haired lady who was more freaking hilarious than anyone else in SNL's heyday. She died when she was only 42 of ovarian cancer. In her honor, this organization called Gilda's Club was born; it provided support services for cancer survivors. She talked openly about the difficult aspects of cancer, such as impacts on sexuality, at a time when many cancer patients were hiding their bald heads in shame inside their homes, afraid that people would "know." Gilda's Clubs exist all over the country. And now, there are a handful of them that are changing their names because young people don't know who Gilda Radner was, because she, you know, had the audacity to DIE before they were even born, and of course the number one thing that cancer centers need to be is "relevant" for the youth. Under this new plan, all of the clubs will eventually change to an extremely boring "Cancer Support Community" moniker.

This is such an overwhelming load of bullshit.

I will say little more about the cancer aspect of this tragic name change. First, let me just put out there that I don't think Susan Komen is a well-known historical figure, and there's a damn large cancer organization named after HER. But no matter. Let me mention that cancer is not supposed to be "on trend" and that people who run these institutions should realize that if someone who was born after Gilda Radner died has cancer, that person is crazy young to have cancer and has bigger problems than not knowing who the namesake is outside his support group's building.

But I've got an even bigger beef here. What does this mean, that we as adults who have some sense of history need to get all worked up over the idea that "kids today" will think we're lame? Are we going to start renaming all the streets and towns and schools all across the U.S. Clinton, Bush, and Obama, just so we don't fall into the Dead Presidents trap?

Names are important. Naming can be a meaningful, even a spiritual, act. Have you ever read N. Scott Momaday's The Names? No, of course not. Well, you should. If only so you could spend your days wishing you could meet someone who actually spoke like this, until one day you had the opportunity to do so when he was speaking at the Planetarium in Chicago during some eclipse, and you were offered one of your all-time favorite Chicago memories: "The names at first are those of animals and of birds, of objects that have one definition in the eye, another in the hand, of forms and features on the rim of the world, or of sounds that carry on the bright wind and in the void. They are old and original in the mind, like the beat of rain on the river, and intrinsic in the native tongue, failing even as those who bear them turn once in the memory, go on, and are gone forever."

And that's what I'm going to talk about here--names, and Chicago. I have to believe that Chicago's Gilda's Club will always remain such, even though that looks really unlikely. It would be great if we could be the lone holdout here. We are very proud of our Second City comedic culture, and I don't see us agreeing to dis Gilda when so many people, male and female, who grew up here still remember their mad crushes on the woman. But there's also the simple fact that we LOVE our names in Chicago.

Now in New York, maybe you're cool with saying you're going somewhere that's at first and ninth, or however New Yorkers talk. Pretty much anyone with a map could figure out what you mean. But here? Please. We have one of the most logical, well-planned grid systems in the country and maybe the world. And then we went all Chicago-style on it, and NAMED everything, making it impossible for the uninitiated to traverse.

So when I talk about where I grew up, I say Austin and Madison. The west side of the city has sub-neighborhoods with nicknames like K-town, neighborhoods that are almost entirely black today but filled with streets with random white ethnic names like Karlov, Kolin, Keeler, Kostner, Kilpatrick. Who the hell are those dudes? Does anyone know? It's doubtful. We also have this fairly obnoxious tradition here of giving "honorary street names" to just about everyone and his brother. They are these little brown signs that are attached to the regular green street signs, and they usually represent single blocks. Sometimes you see these names and you just wonder, really? Was that just somebody's uncle who always sat on the bench over there or what?

But that is part of what makes Chicago awesome. We are serious about our names. There are all kinds of people who will look at you blankly if you ask where Macy's is. Some people will refuse to answer out of stubbornness or hostility. If you don't know what I'm talking about, well, then you're not from here. And my kids don't even bother to call it the Sears Tower because they still call it the "Serious Tower."

We have this complicated highway system, right? But do we talk about 90/94, 290, etc., like every single other place on earth? Hell no! We drive down the Edens, the Kennedy, the Dan Ryan, and we don't drive on the Eisenhower because it's actually just the "Ike." And you know what? I actually know who all those people are. Over time when I was a child, I asked my parents, and they told me. And I know my dead Presidents and my Polish war heroes and my esteemed black authors as well.

We are attached to names in this town. I remember when they decided to change the El lines to color names. I'm sure the Millennials out there only know the red, blue, green, brown, and orange lines (and now the pink line--worst color for a train line, and there's that yellow line that runs for like a block in the north suburbs). But me? I still sometimes call the trains the Howard, Dan Ryan, Congress, Douglass, Lake, Midway, or Ravenswood.

When I was in grade school, the local middle school was Hawthorne. By the time I went into 7th grade, it had been changed to Percy Julian. I remember this, because there was a lot of conversation about it, and here was why the name was changed: We lived in a very diverse community and people thought there were too many schools named after white people. So the name was changed, and a bunch of kids learned about a black scientist they might not have heard of before who was a pioneer in using plants such as soy for medical advancements. He's often known as the guy who invented peanut butter, but that's not actually true. He did, however, at one point say this: "I have had one goal in my life, that of playing some role in making life a little easier for the persons who come after me."

See what happens when you name things after people who have been forgotten? Kids might actually, you know, learn to remember them.

After all, who gets to decide who's relevant? Does death put you in the irrelevant category? Is there some kind of "canon" of people who get to have shit named after them? Personally, I'm glad that I live in a place that has schools with names like Brooks, Chavez, Payton, Robinson, and Washington (not George, but Harold). I like how some of the more random names force us to learn something we didn't know before--like who the hell "Lou" Jones is. I ride the Rock Island line, a commuter rail that brings me from the far south side of the city to within a block of my office downtown. A few years ago, they finally built a station by Comiskey (OK, here's one instance where I admit that the new name can be apt, because that place really is "The Cell"). This station is called 35th Street/"Lou" Jones. The automated voice sounds hilarious saying this. Now, who is this Lou dude?

It's not a dude at all. Lovana Jones was a state senator serving the south side of Chicago for almost 20 years. She was known for her grass-roots political style and her work with poor children. She died in 2006 and they decided to name this station after her in 2009. I didn't know anything about her until then. She sounds like a pretty neat lady. I'm sure she would have gotten a kick out of hearing the voice coo "LOOOOOOOOO Jones" every time some kid got off the train to get to class at IIT.

And so, because I like names and honoring them and the people who built the legacy behind them, I hope that Chicago has the good sense to keep its Gilda's Club for as long as it possibly can. When she died, I remember people nodding wisely and saying "oh well you know she SMOKED," as everyone seems to like to blame women for their own cancer deaths, even though the SNL cast at that time might have collectively had the worst personal habits on the planet and yet, you know, they are almost all STILL ALIVE (John Belushi obviously being a major exception). Now we know that she most likely had a genetic predisposition to cancer (BRCA gene) and that if this was well-understood at the time, she might have lived. I remember the conversation around the circumstances of her death only a very little bit, however. What I remember very well was this:

There was this really skinny Jewish lady with hairy armpits and enormous bushy hair who was able to literally bring you to your knees with how freaking funny she was, and even the people she was famous for making fun of actually loved her for it, and eventually sent condolences to her family signed "Baba Wawa."

It was that lady who built the legacy that became Gilda's Club, and we should remember her for it. We should use this, actually, as an opportunity to tell those kids who are terrified when they walk through the Club door because they don't know whether they will live or what will happen or what it will be like, that having cancer does not mean that you are not still that person you were before your diagnosis. Once there was this lady who was hilarious and insightful and everyone loved her, and she had cancer, and no, she didn't make it, which isn't fair but is a reality that you need to learn to live with, and she said this:


I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious Ambiguity.


Sunday, November 18, 2012

The Writing Life






People often ask me what those closest to me--especially my husband--think about all this stuff that I put out there on the Interwebs. In some ways this whole blogging thing is easier for me to get by with, because I started doing it for a seemingly untouchable reason: I found out I had cancer at a young age and I didn't want to have to talk to people about it, so I started writing about it. And then...well, all of this happened.

I started writing about other things, pontificating in that random Katy way that is too long and usually only circuitous at the end, when somehow it all comes back together. I know that soon I will no longer be able to write about my kids here, because they will be too old and self-conscious and they will hate me for it. On the other hand, on the very first day of that other blog, I said that my goal was to live long enough for my kids to hate me for some reason other than dying, so...there's that.

I also write about marriage, and sex, and past relationships in my blogs, and I know that many spouses would have a hard time with this. Gabe has never had qualms with what I say here, at least not that he has admitted. One time I did ask his "permission" to publish a post, in that I showed it to him before I hit "publish." It was when I wrote a post about how hard cancer is on a marriage. I asked him if he had a problem with it, and he said: It's your blog. It's your life that you're writing about. I'm just glad to be a part of it.

Aww, right?

Now look. Sometimes I see him rolling his eyes as he reads. A few times he has said, Really, Kate?, slightly aghast at the inappropriate shit that I reveal. Most of the time, though, he laughs, and very rarely is he surprised at what he reads.

That's because I am a storyteller. I have told him many of these stories before, unconcerned with how he would react if the story included some other man or another facet of my life that a husband might not want to know about. Gabe seems convinced, in fact, that I ALWAYS tell him stories that involve some other guy, because apparently those are the only ones that he bothers to remember. But the point is, he's here, he's my co-pilot, right? So, I tell him stuff.

Just not always right away.

Years after we met, after Lenny was born, we suddenly found ourselves in a situation where we were actually around each other a lot. We got married a year and a half after our first date and Lenny was born less than a year and a half after that. When we met, we were both working full time and I was in grad school. We were busy 20- somethings. Then, we had this kid, and we both took paternity leave. And we had all this time together, learning how to deal with a newborn when neither of us had ever even held one before, and, well, we started telling each other stories. We learned things about each other that we had never bothered to learn in the three previous years. I'm the talker here (shocking, I know) so I told more stories than he did.

What I'm trying to say is, life is an interesting story, and if you are interested in writing, it's probably because life interests you enough to remember what it was like. I write so I can remember my life. But to get it right, I often tell the story to someone first.

Gabe is not a writer. He tells stories differently. Sometimes, they take years to come out. For example, after Augie was born, I went to the department store to buy shoes (also shocking, I know). I decided to buy Gabe some shoes and was embarrassed to admit that I didn't know my husband's shoe size. Seven years together, married with two kids, and I had no clue what size shoe he wore. I called him to ask, and when he said 11.5, I was surprised. "But honey, you're only 5'9"! What's up with those big feet? And those gorilla arms and hands!"

I was teasing him, right? And then he starts telling me about how when he was 13 and 14 and he was living with whoever would take him in, he was hungry. He survived on butter sandwiches or something and his growth was stunted. His feet kept growing, his arms got longer, but he didn't get taller. Some doctor at some point told him he should have been 6'1".

I stood there in the store, not quite knowing what to do with this information that had never been divulged to me in the past seven years by the person closest to me, and I said the only thing that could have been said: "Well, damn, honey, I could have used a tall man in my house! 11.5 it is!"

And life went on. We continue to tell each other stories, but I have had the opportunity since then to hear more of them, in part because I have learned to ask very specific questions until the stories come out. Yesterday, I asked Gabe if he had ever gotten into fights as a kid. There was some reason this came up, but that is escaping me now. He gave some examples of getting picked on in grade school and high school, talked about how he used his tae kwon do to get him out of situations, said he never understood the point of fighting, especially since he has such a hard head that when kids would punch him in the head, he would just stand there and say, look, you could do that all day and it won't do a damn thing to me. And then he said this:

Then there was the time that I got suspended from kindergarten.

Excuse me?

The story goes like this. Apparently there were older kids used as "crossing guards" to stop the younger kids from running near the school. Gabe was tearing around running anyway, the older kid told him to stop, and he didn't listen. So the older kid caught him in a bear hug and Gabe began pummeling him with little five year old fists, kicking him and screaming "IT'S A FREE COUNTRY!"

So he got temporarily kicked out of kindergarten for beating up the crossing guard.

I can honestly say, I'm glad to be a part of it all too. If you like to write, you need to surround yourself with people who can provide some good material.

Here we are, 30 years ago, at age seven. Who would have guessed?

Wednesday, November 7, 2012

37 is the New 37






Recently, I received a terrifying invitation.

It was a facebook invitation to join a page dedicated to my as yet unplanned but still upcoming 20th high school reunion.

Everyone on the site is all, oh shit, has it been 20 years? But we aren’t that old! We look so young! Hey remember when…

And I’m thinking to myself, yeah, I remember. I mean, I had a great time in high school. I’ve never wanted to go back, and I’m a little bitter that I’m experiencing puberty NOW when I was already done with it before I even entered the 9th grade, but I’ll get a kick out of the reunion. In general, though, I’ve always been one to be happy to move on to the next stage.

So I think to myself…yeah, I can believe it’s been 20 years. A whole lot of shit has happened. If it hadn’t been 20 years, I would have to wonder how I would have had time to go to college, build a career for myself, put myself through grad school while working full time, engage in a bunch of real estate transactions, fall deeply in love and break up and have a variety of relationships, eventually get married, bring a few human beings into the world, build friendships that lasted through life changes and long distances, fight cancer, reinvent myself for the umpteenth time, and etc. and on and on.

I mean, if that had all happened in, say, five years—then I would be impressed.

So it seems like 20. It especially seems like 20 since things are so different now than they were when I was a teenager. I’ve written a post about the nostalgia that we all seem to feel for our pre-digital youth with the snail mail and the non-virtual sex and the carbs and everything. What I think about now, with my new-found perspective, is how parenting has changed.

For most of high school, it was just my mom and me at our house. My parents split up when I was 15 and my brother was already away at college. My mom worked and was going to college, since she didn’t go when she was 18 like everyone seems to assume everyone does even though of course that’s just one of those upper middle class assumptions. And maybe some of my notions of what it means to parent a teenager are just distorted through the lens of how it was for us, but here are a few examples of things that seem unlikely to happen today or be accepted today. The fact that I’m writing this should hopefully cement me as a cranky old lady way beyond my years. It’s what I’ve always wanted, after all. There’s just this old lady inside of me, going crazy for the chance to come out. I might not make it to an age where she gets to do her thing, so I’m going to get a jumpstart right here.

Here’s what I learned about being a parent of a teenager from my upbringing as one in the late 80s and early 90s. May I have the strength to bring some of this wisdom back into the rotation:

1. The generation gap was real. It was an actual THING. I was not friends with my mother. That was something that happened earlier than it might have if we hadn’t been on our own together, but in general, that friendship was an understood privilege of adulthood, not childhood. She was still the dictator of my universe. I got away with some stuff, for sure, and I know that I tried her patience and probably gave her a few mini-strokes along the way, but the bottom line is she wasn’t trying to be my peer. I understood that this was a great thing about growing up—not being embarrassed, not giving a shit what people thought of you. Teenagers are supposed to care about that, not adults. My mom would tell any kid off, no matter where or what was happening, give me shit in front of my friends, refuse to let me do things that I thought were totally reasonable, and demand that I respect people older than me. I never sat down around older people, including her, and she was only 42 when I moved out of the house. I never joked with friends about how hopelessly old and uncool people’s parents were, because we never expected nor wanted our parents to be cool. They were, you know, PARENTS. If they asked “lame” questions about school or friends you didn’t really consider it lame at all, because those were the kinds of things they were supposed to ask you. They weren’t supposed to be RELEVANT, they were supposed to be above caring about being relevant. They were supposed to be those older people who loved you even when they weren’t required to through any familial bond. And so today, when I talk to teenagers, I talk about whatever the hell I want and I don’t care how lame it sounds, because I literally DO NOT CARE. I am 37 and I can say and do what I want because I EARNED it, kids. And there’s a reason I married a man just two months older than I am. I LIKE people my age and I’m not trying to be younger, or older, anymore.

2. Your parents might not have your back. And the reason might be because you didn't deserve for them to have your back. I am always amazed when I read these articles about parents who make excuses when their kids get caught doing some stupid hijinks. In my house? Please. I went to parties where kids’ parents knew what was going on, but that doesn’t mean I wasn’t terrified of being busted. Because I knew people in my neighborhood who went to JAIL for possession or being underage or what have you. Now I see 15 year olds openly wandering around in the daylight in my neighborhood drinking and they don’t even fear getting caught. My mom would have been all, ok, good luck with that. That’s your ass. So that’s how I came to be that 22 year old girl who got all vigilante on the white suburban kids who would go buy drugs on the west side and then shoot up in their cars in MY alley because they didn’t want to be too conspicuous in an all-black neighborhood. There I was, managing an apartment building as my second job, a building that happened to be next door to a Catholic school whose population consisted entirely of kids from west side neighborhoods with horrible schools, and I would see these teenagers bringing their heroin into that scene. And I would get right up in their faces, banging on the car doors, telling them if they needed to do that shit they weren’t going to do it in MY neighborhood, they were going to have to bring that back to their daddy’s basement where they belonged. I didn’t look any older than them, but something had shifted in those few intervening years. I had to learn to be that girl somehow.

3. Parents, mothers especially, really did have eyes in the backs of their heads. I just assumed that my mom would know things she could not possibly know and therefore I was kind of a Pavlovian dog about certain behaviors. My mom decreed that I could not be alone in my room with a boy if the door was closed, for example. And then, when she was a single woman with a busy life and even dating, she would just…leave. I would be home alone in the house. Sometimes, she would say ok bye I’ll be back in a few hours, and my boyfriend at the time would look at me like a terrified Lottery winner, wondering, wait, what did she say? And then we would go to my bedroom and CLOSE THE DOOR even though we had the whole house to ourselves because I had been TRAINED about what that meant. And when I was 13 and didn’t go to the pool with my girlfriend but wandered around the neighborhood late at night instead? And had a run-in with some older guys that I never told my mom about? Well, she somehow found out I wasn’t where I said I would be, and then, as I said, IT WAS MY ASS. That doesn’t mean I didn’t say I was going to do one thing and then do another when I was a teenager, but I had to learn to do it RIGHT. Those ditching skills were earned, baby.



4. You might have to go elsewhere for sympathy.
When a boy I had been dating for a month or something broke up with me in the middle of the hallway in the 9th grade, I was just devastated and convinced the world was ending for about an hour that night. I cried and my mom told me it was all right. Then I got deeper into my angst and said I would never have another boyfriend ever again and do you know what she did? She pointed at me and laughed. The woman POINTED. She was doing this knee-slapping thing , cracking up, telling me I was ridiculous. I was so stunned I forgot to keep crying. Then a week later some other kid asked me out.

5. You had to get around on your own. We did not grow up with car pools or play dates. If our friends lived too far away, we just didn’t see them until we were old enough to get there ourselves, via el, bus, car, or our own two feet. Here’s an example. That kid I referenced in #4 who asked me out eventually became my boyfriend. On that first date, when I was 14 and he was 15, we were both too young to drive. Well, he had a cast on his leg from his hip to his foot due to a football injury. And yet he walked the mile and a half to my house, came in, and nervously began talking to my mother. She asked when he would have me home and made other obligatory small talk with that murderous look in her eyes that parents of teenage girls are required to have in such situations. Then, we walked the mile and a half to the movie theater, he walked me home, and then he walked back to his house. Our crappy family car was sitting plainly in the driveway in back of our house, but it never even occurred to my mom to offer us a ride…and HE ONLY HAD ONE WORKING LEG.

6. You didn’t over-share. Correction—I didn’t really tell my mom ANYTHING. I knew that I COULD tell her things, but I chose not to do it. Hell, I didn’t tell my best friend a lot of things. That’s why we kept journals. It was fun to have secrets, or to do things that only those people you did them with knew about, or to have several separate lives all at once. In fact, your mom (and your friends, for that matter) didn’t find out much about what was going on in your teen life until 20 years later when you found out you had breast cancer and you started writing a blog and sharing a bunch of personal stories. By then, neither of you cared nor judged the other.

7. Your interests did not coincide with your parents’ interests, and theirs’ always trumped. So I wanted to learn to ride a horse, or go to summer camp. My mom wasn’t feeling it, so it didn’t happen. I had to go to the park with other families because my parents thought the park was boring. We went to see a movie as a family maybe once or twice a year, at the most, and it was usually something like The Empire Strikes Back, because they would enjoy it. Afterwards we went to the bookstore because that’s what they wanted to do. We watched the Muppet Show because they thought it was funny. Our parents had hobbies and habits and we didn’t interrupt them, unless there was bodily injury involved. Even then, we might be ignored. When I was 19, I burned my arm with an iron so badly it was just shy of third-degree. Always stoic, I simply gritted my teeth through the excruciating pain, walked into the kitchen of my mom’s apartment, and told her I had burned myself. She kind of ignored me. Then I said, no really. I REALLY burned myself. And she said… “I am baking a pie.” Even she doesn’t understand that one, not to this day (see her comment here). But my brother drove me to the ER. He’s also the one who went with me for my practice drives when I was on my learner’s permit. Both of us went on errands the second our 16th birthday hit and we could relieve my mom of her driving duties. I was involved in a crazy amount of extracurricular activities in high school, and I was in charge of figuring out how to balance all of them and how to get there.

8. You would have to fix it yourself. In a way, we were all much more on our own than kids are today. In another way, I suppose we weren’t. But I remember feeling that my problems were MY problems, and I never wanted to burden others with them. I didn’t ask for help. I looked out for myself. I know I could have told my mom anything, and she would have helped me. But if that was the case, what was the point of growing up? I was eager to do it, and to do it my way.

9. You had no idea what you wanted to be when you grew up, and no one really expected you to know.
So you changed majors, had shitty jobs, built a career in a field you didn’t know existed when you were in high school. You wanted to be a judge, until you realized you would have to be a lawyer first. You wanted to be a writer, but you weren’t ambitious enough. You didn’t know if you wanted to be married or have children or where you would live or how you would support yourself. You didn’t know, because you weren’t grown up yet. So you bounced around, and somehow it all came together.

10. And, of course, the music was better. Wait, no, maybe it wasn’t. I had those parents who loved contemporary music, and yeah we had mixtapes and those were the BOMB, (even my mom was jealous of that), but I won’t lie: my kids would know nothing of Ke$ha if it weren’t for me. Life’s too short not to dance in your living room when you think no one’s watching.

A lot has changed in 20 years, but a lot has stayed the same. There are still adults wondering how in the hell kids today are going to turn out normal, and kids who turn out just fine no matter how it was when they were young. Here’s to hoping we’re all still around when our kids have their 20 year high school reunions, so we can say I told you so.



(These photos are of three generations of young women from my family: me at age 15, in a photobooth at Rock N Roll McDonald’s with a random sailor, my mom posing for her high school graduation picture, and my grandmother when she was in her early twenties).

Tuesday, October 16, 2012

Wedding Planning


There’s this thing out there on the Interwebs, I hear, called Pinterest. I’m not exactly sure what this creature is or why people pin things that aren’t really there, but I admit that I feel a little bit out of the loop about it when I see people pinning about all kinds of things that don’t exist except in the land of Pinterest. I am especially out of the loop on this whole phenomenon wherein women plan their weddings on Pinterest…even if they aren’t, actually, you know…getting married.

How is that possible? Why would you put yourself through that horror if you didn’t have to do it? Is this what women do while their husbands are wasting time on fantasy sports? I don’t know, because I remember how much time I wasted on fantasy football and well, come to think of it, yeah, maybe Pinterest works out well for some.

Now, I know that I am supposed to have dreamed of my wedding since somewhere around kindergarten, but I can honestly say that I never thought about it until about February of 2004 when suddenly, at age 28, I was going to be a major player in a wedding of my own. I had never thought about the dress, or who would be in the wedding party, or where it would be or what we would eat or God help me what colors or flowers would be involved. I HAD given some thought to the WHO, and the IF, and the WHY, but never the WHAT of getting married. I had various thoughts about what I wanted to be when I grew up, but I put much more thought into where I would go to college or why I couldn’t just go to prom with my friends than I did any hypothetical wedding.

It makes a girl feel left out, you know? There’s this whole wedding industry out there, and it has spawned this second virtual wedding industry and the whole thing just creeps me out. So I am going to take back the wedding—for all those people like me, all 15 of them or however many there are.

Eight years ago today, I married Gabe. We did not get married at City Hall and we did not elope. We got married, people, in front of a crowd of 110 with food and music and a minister and everything. One of my oldest friends told me afterwards: “You had the wedding I wish I’d had.”

And I’m going to tell you how we did it. I would “pin” this to some “board,” if, you know, I was different.

Wedding Planning, Katy-Style

Sex Before Marriage:
Yes. Often.

Cohabitation: Live together first. This way, you will not be able to blame your day-to-day annoyance with your husband on the fact that you are married.

Engagement Ring: Tell him what kind of engagement ring you want before you are officially engaged. He was the one who said “yeah, I was thinking we could get married,” before he popped the cohabitation question, so don’t feel bad about this. He is clueless but wants to have the ring before he officially proposes. He knows you hate the diamond industry, so that leaves him with a sum total of zero ideas for what kind of ring to buy. Shop online for this ring, which you decide should be a pearl. You may attempt to shop at jewelry stores, even venturing together into the din of Chicago’s Jeweler’s Row, but then you will be blinded by diamonds. Every pearl ring you see will have huge, honking DIAMONDS attached to it. When you tell a vendor, no, I just want the pearl, she will look at you with fear. So, go to www.ice.com. Instead of ice, search the pearls. Find some rings you like. Print off photos, hiding the price. Know in your heart which ring you want. Show the pictures to a few close friends and ask which one looks most like you. They will both point to the cheapest ring, the $110 number, and it’s the one you had chosen as well. You are entirely unsure what that says about you, but you show it to your boyfriend, who balks at the price and tells you he is willing to spend much more on your goddamn ENGAGEMENT ring. And you say, well, I guess this is the part where you start listening to what I want, not what some other random women supposedly want. And secretly, you know this is one reason he wants to marry you.

Engagement Setting:
This should happen in your bedroom, in the condo you bought by yourself years before he ever came along. This story will live in infamy so be sure that the flannel PJs are the homeliest you own, that your ponytail is messy and you are wearing the “spare” glasses, not the funky ones. Know that when he takes that simple pearl ring out of his pajama pocket and says “I’m sorry for everything, Kate, but I still want to spend the rest of my life with you. Will you marry me anyway?” he is hoping for a response beyond “Give me a minute to think about it.” Also know that the original plan, which caused his nerves to blow up, was for him to hide the ring in a sandwich at Hot Doug’s, where the two of you went for lunch that day. So the PLAN was to put your ring in a hot dog, and he just couldn’t handle the pressure. Remember that when you eventually say “yes.”

Announcing Your New Status: Feel free to feel slightly nauseous at the sound of the word “fiancĂ©e,” because WOW that word sounds pretentious. Call your mom the next morning to tell her that your boyfriend acted like a jackass all weekend but then he asked you to marry him and the bottom line is you said ok. Eventually tell other people, when you see them, in person. Do not even consider taking a picture of your finger with that pearl ring on it. Facebook doesn’t exist yet and no one has ever “tweeted” at this point, and really, who uses Friendster or MySpace? Anyway, realize that no one on earth will be jealous of or impressed by that pearl ring, and feel free not to care. Remember that diamonds can be created in labs, they can be crafted out of human ash, and the Russians have recently discovered a diamond mine so large it is reported to hold enough gems to supply the human race for the next 3,000 YEARS, rendering all of those wars and blood diamonds pointless and your friends' engagement rings eventually worthless, while yours is still worth…$110, plus inflation.

Picking a Date:
It’s February when you get engaged, so that means you will need to wait until at LEAST March to get married. Spring weather in Chicago is horrible, and everyone gets married in the summer, so you somewhat arbitrarily decide to get married in the fall—specifically, October. You know nothing about weddings so do not realize that October is a popular month to get married. You are just thinking about turning that month into something with a fun anniversary as opposed to what you are used to celebrating. Who knew how much you’d wish for alternate October celebrations in your adult life?

Financing: Look, you are paying for this entire thing yourselves. Your mom and stepdad have offered a little bit of help, but you weren’t expecting that. A few months after you get “engaged,” you realize that you will kill each other if you don’t sell the condo and find a place that belongs to both of you, not just you. So, a few months before your wedding, you bid on a house in a neighborhood that neither of you has ever even visited. You do not put a contingency on the condo, and for one month you own two homes. Recognize that you chose a home to build your marriage in over the day that the whole thing started, so your budget is super tight, and get over it.

Picking a Venue: You aren’t religious, so you don’t even consider looking into churches, except for a few Unitarian ones that have cool architecture. Call some pretty places at park district and other scenic locations and restart your heart after you hear the price for hanging out there for a few hours. Realize that you have some limitations. Your “fiancĂ©e” was raised for years by his grandmother, who uses a wheelchair. Therefore, you need a venue that will accommodate her. Also, you hate driving from ceremonies to receptions so you require both to be in the same location. Denounce these places with weird rules like “you have to use this specific music” or “you must use our house caterers” or “you cannot serve red or dark colored drinks” on the principle of refusal to begin your marriage in a fascist state. Throw up your hands and consider a wedding in the backyard of your new house. One day, have lunch with a friend. Begin complaining about venues over falafel. Explain that your parents can’t help; they got married at age 19 in the basement of a Unitarian church and had m&ms and finger sandwiches, and your fiancĂ©e has never even met his dad, so you’re kind of on your own. Tell him you hate the idea of giving money to a venue that won’t do anything useful with it. Feel like smacking him when he tells you in an offhand voice that the community development corporation on the west side THAT HE RUNS actually has a chapel, and they do weddings. Lock down that $500 rate for the day.

Buying a Dress: There are so many designer choices, aren’t there? Especially when you shop at Nordstrom Rack. Find a very simple, satin strapless dress that is probably a bridesmaid’s dress, and try it on in a few colors. The ivory one looks like a legit wedding dress, but…you don’t like it. You choose the “mink” color. Who are you kidding? You are going to be 29 years old when you get married and white is just not your color. The mink dress costs $90, a grand $8 less than the dress you bought for your senior prom. It is also literally twelve inches too long, making you wonder what giantess convention was expected at the Rack. Go to a local tailor and tell him you need the dress for a party. Do NOT mention the word “wedding,” and he will tailor it nicely for you for only $20. When the wedding is over, keep the dress in the bag from the dry cleaner/tailor on a hook in your basement. Five years after you get married, not quite five months after your second child is born, dust off the dress and wear it for your anniversary celebration. Be grateful that it fits you at that stage in your life. Be even more grateful that it is several sizes too big for you now.

Buying Rings:
Take a trek back to the dreaded Jeweler’s Row. Search for rings that have both white and yellow gold. Know that you can’t afford platinum, especially since you don’t believe it is any better. Eventually find a ring that appeals to you; it has white gold inlaid in yellow, making it impossible to re-size. Recognize it as fate that the two rings that they have are your sizes (well, the man’s ring is a little big—thank God for freakishly-large knuckles). Tell the seller what you would like to have engraved on the rings. When she looks as if she is about to call security, agree to talk to her teenage daughter, who tells her mother (you assume, since they are speaking Mandarin) to just do what the crazy white people say and if they want “to Blathe” engraved on their rings, so be it. Never take your ring off, except when you are pregnant, and marvel at how pristine it still is.


Buying a Suit: Oh wait, it’s supposed to be a tux? Oops. Buy a suit for your soon to be husband, without him there to try it on, and be proud of yourself when it fits so nicely. For the record, that was a damn good sale! Then pick out a tie that is on clearance because of a spot on the underside, which will never be seen by anyone. Know the second you see it that it happens to be the exact same strange color as your dress. Continue to be proud when he wears that suit to almost every wedding, funeral, and job interview on the calendar for the next eight years.

Bachelorette Party: Don’t have one. Be glad that you have only attended a couple of these, and one of them involved getting deep dish pizza and going to see an improv show. Do not feel prudish in admitting that seeing naked dudes gyrating just strikes you as embarrassing. You have seen enough of that from the dudes you WANTED to see. And hell if you’re wearing a penis hat or writing with a penis pen. That is not the purpose of a penis.

Bridal Shower: Assume that you will not have one of these either. You have no wedding party, after all, so who would plan it? You will be genuinely surprised when you learn that your husband got in cahoots with his aunt and one of his close female friends to plan a shower for you. You will be even more touched to learn that everyone got you the same gift: a small donation towards a gift card to Sears so you could pick out a set of patio furniture for your new house. Think of this when you sit on the glorious front porch, comfortable on those chairs that are now 8 years old, eating meals with the family that was but a glimmer in your eye back then, and be grateful for those who know you so well as to know what gift you would treasure.

Registry: Do NOT, I repeat, do NOT register anywhere. Tell people not to buy you anything, because you are too old for that and you have a lot of crap and you don’t want people to spend money on you. Panic, but just a little, when you notice that people are arriving with gifts ANYWAY. Be glad that one of the guys working at the CDC (which put your money back into the development of arts and other programs in the low-income, African-American neighborhood) suggested putting up a gift table.

Picking Flowers:
There are supposed to be flowers? Why? It’s OCTOBER. Put your mom in charge of this. She buys mums at a nursery and wraps fall-colored tissue paper around the pots. She arranges them on the tables, and tells people to take them home afterwards. Do not give a thought to the bouquet. When fiancee’s gram offers to buy a corsage, politely refuse since even though the dress is cheaper this isn’t the PROM. Realize the day before the wedding that there is no bouquet. Offhandedly tell your mother this. End up with no less than three bouquets bought by various parties at the last minute.

Choosing an Officiant: This is not a church wedding, so this is quite difficult. It is unnerving trying to figure out how to go about choosing a judge. You don’t know anyone with those $5 certificates allowing them to marry people. OK, actually you do, but that just seems wack. Somehow, find a Unitarian minister, a woman who lives in your neighborhood. She charges you a few hundred dollars total, and gives you a few thousand dollars worth of service. She meets with each of you a few times to do counseling sessions, and meets with you together a few times as well. She checks in on you periodically. She comes to your aid many times, seems to genuinely like both of you, and does an absolutely amazing job writing your ceremony. You remain friends with her for a few years.

Winnowing the Guest List: Invite a few of your ex-boyfriends. Only one of them will come, but, let’s face it, he was the only other one who really mattered. Do not invite other people you probably should have invited due to the tight budget, feel guilty, and realize they don’t hold it against you.

Finding a Band: In a world wherein you are about to marry a professional IT guy who specializes in Macs, the band choice is easy: iPod. It’s really fun putting that playlist together, especially all the wildly inappropriate songs that you include--the soulful songs about infidelity, that song that you just love that happened to be your special song with your long-term ex who will be at the wedding…the whole thing is awesome, and you still listen to that mix on road trips.

Recruiting a Wedding Party (and hiring a photographer and a DJ): Choose not to have one because you don’t like picking amongst friends. Realize that this is a problem when you have no one to hold the bouquet for you during the ceremony. Enlist your brother’s girlfriend by positioning her in the front row and doing a sly hand-off before taking the stage. Ask your brother to write and read a poem; find out later that he will be forced to be master of ceremonies for the whole thing. Enlist your fiancee’s childhood friend, who provided him a place to live for at least a year in high school, to do another reading. Ask two of your girlfriends to take pictures, and ask another of your fiancee’s friends to hit the button on the iPod at the right moments.

Planning the Ceremony Details: Get married at noon. It’s cheaper. Also, recognize that weddings are intended for traditional families and neither of you has one. Ask your mom if she would like to walk you down the aisle and listen to her ask “HAVE YOU LOST YOUR MIND?” Tell fiancĂ©e that you will just have to walk by yourself. Listen to him tell you that he will be bawling too hard watching you walk by yourself because you are so beautiful and yadda yadda. Decide to walk together. Try to ascertain how to know when to begin walking; minister suggests that she bang a gong, which seems about right. Walk arm in arm down the aisle to the orchestral version of the Buffy the Vampire Slayer theme song, which ends at precisely the 45 second mark when you have reached the stage. Choose a few poems for the readings by various obscure authors. Take some of the typical vows, some atypical ones, and write the rest yourselves. Marvel in how moved everyone is at the ceremony, how everyone—including you—cried when your brother read his poem, and how many people told you they wished they had used the following Katy-authored vow in their own nuptials: “I promise to try to make your life easier, not harder.”


Planning the Reception Details:
Again with the traditional families. Forgo all the mother-son etc. dances. Do not allow speeches, even from your new husband. Make sure there are lots of children present to take the spotlight off of you. Dance your first dance as a married couple to Johnny Cash’s “Will you Lay with Me in a Field of Stone,” and laugh when the friend hits the wrong button and the Beastie Boys come on momentarily instead.

Choosing a Caterer: Let a friend who got married six months earlier do the work for you. She wasn’t a big wedding person either, and she liked the caterer she used. So go with this Swedish deli on the north side, which gives you a great buffet style lunch and allows you to bring your own paper plates and plastic utensils. Smile when people, including a professional chef who attended, tell you how tasty the food is, “unlike most wedding food.” Enjoy the leftovers for days.

Buying a Cake:
Remember that using the word “wedding” calls for a 3,000% markup. Enlist a bakery on the south side that makes great cakes. Tell them to write congratulations on a sheet cake. Your mom handles most of these details, including the one where they balk the day of the wedding because they are afraid to deliver to the neighborhood where you’re getting married. Begin to panic, but only slightly, until your mother calmly goes into the next room with her phone, saying she will “take care of it.” Continue to wonder what she said to those crackers to this day. Enjoy the leftovers, including the frozen pieces you save for the next year, but never use that bakery again.



Stocking the Bar:
Accept that this chapel does not allow hard liquor, thankfully, since you are paying for everything yourselves. Go to Binny’s and buy a bunch of cases of red wine and beer. Buy champagne. Get a bunch of 2 liters of pop. Realize that people don’t drink a lot in the early afternoon, except for your husband’s friends who are still there when you are changed out of your wedding dress and killer shoes and you are standing there impatiently wondering WTF until your husband makes a line of beer bottles out the door so those dudes FINALLY leave.

Extras: Ah, the crucial details…the favors, invitations etc. Go to one of those invitation places online and order the simplest one. For favors, think about all the different things you have received at weddings over the years and know that nothing will top the ceramic dolphin, because nothing says I swear to love you forever like ceramic dolphins. Instead, go straight to one of your Li-Young Lee poetry books and find that one about eating peaches. Buy some pretty fall-themed stationery at Target and print that poem on it. On the bottom, include this: “Thank you for sharing in the joy of our marriage celebration. Katy and Gabe, October 16, 2004.” Roll up the paper and tie an orange ribbon around it. Use your home printer to make 110 copies, one for each guest, including the kids. Smile when people tell you that yours is one of the only wedding favors they have ever kept.

Changing Your Name: No. Just no.

Planning a Honeymoon:
Stay at a bed and breakfast somewhat near the wedding venue the night before, because the Dan Ryan is under construction and lord knows how long it would take you to get there or if you would be late for your own ceremony. See that as part of the vacation, though you refuse to have sex with your fiancĂ©e the night before on some kind of absurd principle that overlooks the countless times you had had sex with him before, but no matter. Following the wedding, drive home, in your regular car. Spend your wedding night opening the gifts you didn’t expect and marveling at the fact that people gave you money and realizing that this house was now your house as a married couple. Answer the phone when your best friend from childhood calls. Talk for a bit. Eat some leftover cake for dinner; after all, you were home by 6 pm and you’re hungry again. Have sex as a married couple and realize how it is exactly the same and be comforted by that. A few days later, get in the car and drive to Wisconsin, stopping at random places on the way to Door County, including a tiny inn on a dairy farm in a town called Norman.

What to Do When Things Go Wrong: Accept it. So, your brother lives in Hungary at the time, and he has a completely absurd issue with his flight, which is extremely turbulent. His luggage, and that of his girlfriend, does not arrive. Luckily, he had an old suit left at your mom’s place, and you lend something to his girlfriend, who is much smaller than you but looks fabulous in it anyway. He is your brother and he is a teacher, so accept that he will take it upon himself to tell people where to go for the reception and other small details. It’s lucky that his plane landed, because someone had to tell everyone about the massive car accident that took place in the parking lot during the reception. “If you have a car of X Model, X Make, color silver with a license plate of X, please see me.” And then your boss, one of your old coworkers, and your best friend from growing up could find out the extent to which their cars were totaled by some drunken teenager driving in the lot. All the while, you will acknowledge that it is October, so while it is often beautiful that time of year, today it is 38 degrees and raining and you look freezing in all of the photos you took outside. This is why you did NOT plan an outdoor wedding after all.

Notice the fear in your new husband’s voice when he asks you what you thought of the whole day. Listen to him tell you that he just wants you to be happy. Crane your neck to the side with some difficulty, because all of the gifts and leftover food and cases of wine are balanced on your heads inside the subcompact car that he is, indeed, driving himself, sober as he is. Think back to yesterday, when he had to tell you that the day before your wedding, your car had been broken into in front of the house you’d only lived in for a month. The video camera was stolen, but the box of disposable cameras was still there, and those yielded the best photos of the night anyway. Remember that you spent your last day as a single woman at the car-window repair place. Ponder for a moment how you will answer his question. And then, tell him, “Well, you know…(PAUSE)

It was perfect.”







Thursday, October 11, 2012

28 Years Later, Still Walkin'

I celebrate some strange anniversaries. Some people just focus on the wedding or first date, or the birthday, or the graduation or some other major life event that pinpoints how life was different before that day from how it would be after that day.

Today, I am celebrating 28 years since I was hit by a car while walking home from school.

I’ve written about this a decent amount before—at Katydidcancer. I wrote a fairly apt synopsis of how this event changed my life in a post I published on Day 11, before I really had any idea what I was facing with my cancer. I talked about how excited I was to see a friend who went to Catholic school; we had a “play date” before anyone had ever coined the term, and our entire plan was to have a leaf fight. We had to wait a full year to have that leaf fight; it was fairly epic, as I recall.



But on October 11, 1984, something else happened, changing the course of my life forever.

I was walking with a large group of kids. I sensed that something was wrong. I believe in nothing New Agey, for the most part, but I do believe that I had a very real premonition that day. I also believe that Augie is reincarnated from some kind of hard-drinking, smooth-move dancing traveling circus performer. I may not be religious or like yoga, but I do believe those two things.

I sensed something, and so I hesitated before crossing the street. I looked both ways at least five times. My friends were ahead of me. There were no cars coming in my direction. And then—well, my life flashed before my eyes. I knew I had been hit by a car, though I didn’t know how that was possible, or where the hell it came from in the empty street. I felt myself flying through the air. Random memories populated my terrified nine year old brain: learning to play tennis, walking in a park, my brother’s friend standing in our yard. I knew that when I hit the sidewalk, I would be dead. I wanted to stop time. I wished I could just STOP, right there in midair.

More than anything, I just couldn’t believe it.

This wasn’t real. This wasn’t happening. But of course, it was—or I wouldn’t have been thinking this isn’t real this isn’t happening. I was a little kid, but I knew that if I was furiously denying it, it was true.

I hit the sidewalk and lay there in a crumpled heap. I couldn’t move. I heard people screaming. I saw a woman, a mother, I suppose, with her hands over her face, crying. I saw a car with a large dent on the hood, and I wondered how it got there.

That dent was the size of my body.

I wasn’t dead.

A little boy, who was probably younger than me, came over to me. He was very small in size, dark brown skin, long eyelashes over his black eyes, very short fade in his hair. He held my hand and told me that someone was going to get my mom and that I would be ok. When I close my eyes, I can still see his face.

I have never told anyone that detail of this story. I have never known whether or not it was real.

There is another detail, one that you might question, but I swear it is true. While the ambulance and fire engine sirens were wailing and adults were standing over me yelling instructions at each other, I looked down at my hand. There was a small pebble lodged in the skin of my right index finger. I removed it, and my finger bled. I told myself that I was still alive. Then I asked myself, if I really live through this, if I am still alive a while from now, wouldn’t it be stupid if that hole from that pebble was all I had to show for it?

And, to this day, it is. That scar remains, while no other physical scars are apparent.

My mother did arrive, eventually, though it was probably only minutes later. She screamed at the paramedics, who were trying to move me, because they asked me what happened and I said that I jumped out of the way. Clearly, I was in shock, crumpled up, and the child-size dent in the car should have made it obvious what happened. This was no hit and run; the woman who had sped out of nowhere was screaming and crying hysterically, saying, I hit that girl! I hit that little girl!

It would be quite a while before we learned that the police simply let her walk away, without taking her name or her license plate number. A tow truck came for her car. I knew who she was—she was a lunch lady at my school. Years later, I saw her riding the bus, and I felt sorry for her, because she looked so scared of me. I don’t know if she ever drove again.

My mom stopped the paramedics from moving me, since no one knew if I was paralyzed, near death, or what. A neighbor, the older brother of a childhood friend, had run home to get my mom, and he had told her “Mrs. Jacob! Katy got hit by a car! It’s her leg! It’s her leg!”

I think he was eleven. I don’t know how he could tell the nature of my injuries, but he wasn’t far off the mark. My mother told me later that she thought my legs had been amputated and that I was lying there, bleeding to death in the street. She must have run the five blocks in under sixty seconds.

I really didn’t want to get into the ambulance. I had been in the hospital for a week only six months earlier, suffering from what turned out to be a toxic reaction to my anti-convulsant medication prescribed to control pediatric epilepsy, but that is a story for another post. The point is, I begged them to let me go home so I wouldn’t have to go to the hospital.

I lost. In so many ways.

My mother was not allowed to ride in the ambulance with me, so I went to the dreaded hospital alone. I have no idea where my brother was, but he was in junior high school at the time, and was probably at home—maybe by himself? I never thought to ask. The ambulance ride didn’t take long. In the emergency room, they wheeled the stretcher at lightning speed, and a strange adult came up to me and asked me to sign a piece of paper. I was barely conscious. I was, also, myself. I did not trust this lady for one minute. I told her that I wouldn’t sign anything without my parents there. They must have seen this altercation, so they came over, asked what was going on, saw the piece of paper. It was a statement saying that we wouldn’t sue the Village for the accident.

I would have liked to see how that document would have stood up in court if I HAD signed it—a dying nine year old child.

And that’s what I was. I had massive internal injuries throughout my body; my heart and lungs were mostly spared, which probably saved my life. They didn’t know if I would make it during the first few days. It took 25 years and a cancer diagnosis for my mother to admit that to me. My pelvis was broken on the left side in several places—from the impact of the car. My pelvis was broken in a few places on the right side--from the impact of the sidewalk. I didn’t know at the time how nearly impossible it is to break both sides of your pelvis at once. My injuries were all internal or in the bone, and except for a road burn and some scrapes, I looked normal.

It is irrelevant to go over how fate determined that I wouldn’t die there, that I wouldn’t be paralyzed. It is irrelevant that my parents decided not to sue anyone, even though the police, paramedics, Village staff and others acted in such an egregiously incompetent manner. In the end, we received $1200 in insurance money from the whole ordeal, and with that money, my parents bought me an upright piano, which I can still only play with my right hand. Weeks later, I described the lunchlady to the police, very very accurately. Then, they proceeded to ask me—a nine year old girl—to describe the make and model of the car that hit me. I had no idea. Didn’t you take that information down when she was yelling and crying in the street? The policeman stared at me blankly as I sat in my wheelchair. I told him I thought the car was maroon, with a white stripe across the doors. It had four doors and was one of those big, classic cars, like one of those Lincoln town cars my grandparents used to rent for vacations, but I wasn’t sure.

It turned out the car was a brown Oldsmobile with white stripes, so the police decided my statement was worthless, even though I told them exactly who had hit me. Shifts were changing at 3:30 when the accident took place, and no one wanted to take responsibility. He made me feel like an idiot, like the whole thing was my fault, and I didn’t believe that, no matter how traumatized I was.

Between that, the Village official, the paramedics who could have rendered me immobile for life for moving me before ascertaining the extent of my injuries, and the orthopedic surgeon who was such a jackass that he threw a clipboard at my mother by tossing it across the hospital bed, WHILE I WAS STILL IN IT, and that clipboard landed right next to my excruciatingly painful hip, and it’s no wonder that I don’t trust authority figures easily.

But I digress.

I spent a week in the hospital. No one knew what to do with me. The doctors didn’t want to put me in a body cast, which was the most effective way to set my bones, because they didn’t want to stunt my growth. They decided against surgery on my hips and chose to watch me over time to see if my bones fused together naturally. Once it was determined that I didn’t need a blood transfusion, and that my internal hemorrhaging was subsiding, I was released.





I was released, but to what? I could not go to school. I was bound to a wheelchair, given no directives on how or when to begin to learn to walk again. I could not go to the bathroom by myself. I spent my days on the couch in our living room and we had a portable commode installed right next to me. My mother stayed home with me, though she received no support, financially or otherwise, for my care. My parents moved me so I would not get bed sores. My dad carried me up to bed at night. I stubbornly clung to my old ways, and I slept on my left side every night when my parents couldn’t see me. It hurt so much I could barely breathe. I began to have strange rituals; writing the same phrases in my diary every night. I had daymares—visions of my fingers on tires moving at 60 mph, flashbacks of asphalt that made my skin crawl. I began to have night terrors.

There was no Americans with Disabilities Act in 1984. I had absolutely nothing wrong with my brain, and yet, I was denied an education. Can’t walk, can’t attend public school. I had a tutor once a week, who taught me math and who taught me that a quick wit was more important than the fourth grade. I received no physical therapy at all. The rehab people sent us a walker made for an adult. I was supposed to use that to transition to crutches. I had to put my hands up to reach it.

That didn’t work.

So I used a wheelchair to get around for three months. Sometimes we tried to make a game of it, racing the wheels, doing tricks, but it wasn't actually fun. I was bored, and lonely, and traumatized. I was also happy, and busy, and accepting of my new reality. I learned that it is possible to be all of those things at once. I missed my friends, but I understood how hard it was for them to see me. Adults seemed to fear me, or pity me; they shielded their children’s eyes from me or looked at me openly with disgust. While my family picked pumpkins at a nearby orchard, I heard a man mutter under his breath about how people like me shouldn’t be allowed in family places like that, and my dad “inadvertently” ran into him with the wheelchair.

When we went trick or treating, my 12 year old brother was annoyed that he had to get candy for me. I’m sure he was too old for trick or treating, or at the very least, he was too old to be seen with his little sister. I did not make the whole thing easy on the family. I was terrified to go back to the intersection of the accident, so we only went to the blocks directly surrounding the house. My brother would go to a house, get his candy, and then ask “Can I have one for my sister who is in a wheelchair?” With the exception of the close neighbors, who knew the whole story, no one believed him; they assumed he was trolling for extra candy. So my dad would wheel me out from behind the bushes, and we got shitloads of candy that year.

I knew how close I was to death, and it was very hard to understand and to accept. It took a long time. I went to therapy, and I just talked to the counselor about what I thought he wanted to hear. My pediatrician knew what was wrong with me. He told my mom: “That car accident scared the shit out of her.” I heard him say this. Somehow the counselor couldn’t get that out of me. I didn’t sleep at all for months. I drove everyone in my house nuts. One night, I watched a made for TV movie about a little girl with cystic fibrosis. Why my parents let me watch Alex: The Life of a Child, I will never know, but thank God they did. The little girl dies when she is eight years old; it is based on a true story. I lost it afterwards, beating my little fists on the ground, crying, screaming, and my mom had no idea what to say to me or do with me. Finally I shouted: “IT’S NOT FAIR! IT’S NOT FAIR THAT SHE WAS SO LITTLE AND SHE HAD TO DIE AND I COULD HAVE DIED TOO! IT’S NOT FAIR THAT I’M GOING TO DIE!”

And after that, I slept just fine, grimacing through the pain in the hip I shouldn’t have borne my weight on. I didn’t need therapy. I just needed to accept my own mortality—at nine years old. Simple, right?

No one ever told me I could have died. No one ever told me I might not walk again. No one ever told me I wouldn’t be able to play certain sports, or bear children. No one told me, and maybe that was why some of those things became true, but most did not—because I didn’t know what was possible and what was impossible. I just lived my life.

I went back to school like nothing had happened, though I was devastated when a teachers strike pushed my return back a bit. I remember learning how to walk. Think about that. I REMEMBER LEARNING HOW TO WALK. How many people can say that?

Eventually, I stopped playing basketball. In sixth grade, I was one of two girls who remained at the end of the season on the co-ed team we had joined months earlier. All of the other girls dropped out. We were mostly taller and faster than the boys, but we rarely got to play. I told myself later that was what beat the love of basketball out of me, but that wasn’t really true.

It hurt to play basketball. It hurt to jump rope. Years later, I would learn how much it hurt to use a high-impact rowing machine. As a child, I learned that I couldn’t run as I had once been able to do--at least not without pain. When I say pain, I do not say it lightly. If you were to hand me one of those hilarious smiley-face pain scales, I would still have a little smirk on my face at the point at which everyone else was bleeding from their eyes. My tolerance for pain is very high, and I am proud of it. So when I say that some activities hurt my hips, imagine your bones being placed in a vise and slowly crushed.

Even at nine years old, I never slept for more than an hour at a time, when I would wake myself momentarily and switch sides, lest my hips just locked up. I didn’t know what “high impact” activities were, so I just assumed I wasn’t particularly athletic, though I had played basketball and floor hockey for years, could throw a perfect spiral and jump rope for two hours without stopping for more than a minute or so. I just thought I had changed, and that was ok. I wasn’t competitive, didn’t care about winning, and so probably wouldn’t have pursued sports seriously anyway.

It’s interesting, though, how I never made the connection. My hips hurt before the rain. As a teenager, I learned that if I didn’t walk every day, I would feel like an old lady deep in my bones. But I never thought to myself, oh, that’s because of the car accident. To me, that accident was something that turned me into myself, gave me a deep and everlasting perspective into suffering and not taking things for granted, that made me wise beyond my years, that got me accepted into every college that received that moving essay.

That accident was an experience, a fact, not a commentary on my body. I never felt “less,” and I never felt broken, and I never felt sad for the things I had done easily that I could no longer do. I was more comfortable in my body than almost any other adolescent girl on the planet, probably, and that car accident was a big reason why. I had nice legs, sure. But damn, how they could walk!

I guess I got some things right.

I just didn’t make the connection. I got my first period when I was eleven. I wear the same bra size today (even after two kids, and breast cancer and everything else!) that I wore when I was 14. And yet, my hips didn’t grow until I was 21. I was stunted, as the doctors had feared—but, in the end, even me stunted was ok.

For all intents and purposes, I shouldn’t have been able to do many of the things I’ve been able to do—such as carry and deliver children without necessitating a c-section. But I didn’t KNOW that. So I did it anyway, and they obliged me by being small (in Lenny’s case) and by arriving 3 weeks early (in Augie’s case). My ob-gyn was surprised, but only slightly, that my body adapted so well.

Some people work out three times a week. Often, I work out three times a day. It helps me sleep, no matter how restlessly. I have always loved running in the water, and it only recently occurred to me that it was because I can’t run on land. So I hang out at water aerobics with the old ladies, furiously pumping my legs while they look at me like I’m nuts. I walk, I do strength training, I spin. Spinning is just about the best thing that has ever happened to this body. It’s so low impact, and I feel so successful in the spinning studio. I sprint faster than everyone. I have strength, and endurance. And yet, spinning too is a reminder: If I go a week without doing it, my hips start to hurt so badly I wince. My body has become addicted to activities that attempt to stave off the inevitable pain.

Deep down, for all of these years, I have known that my “old wound” was a problem that had not corrected itself, no matter what I had done to defy it. This was confirmed for me when I finally got physical therapy for my post-cancer chronic pain and scar tissue, and my amazing therapist, incidentally a former collegiate rower, learned about my past non-cancer issues. As she tortured me by breaking up my scar tissue and I just gritted my teeth through the unbearable pain, I asked her:

Well, do you think anything would be helped by getting PT for my hips now?

How long has it been?

27 years.

And they didn't set the bones or give you therapy or teach you the correct way to walk again or anything? Not ever? Well…just think about all of the things you CAN do. You are a very fit and healthy person. Concentrate on that.

Yeah, there are things I COULD do, but it hurts, and I’ve had so much pain in my life, I just don’t think I have anything to prove by hurting more, you know?

Right. Get down on the floor and do a plank for me until I tell you to stop.

Yes ma’am.



All of this helped me with cancer, actually, as the bone pain didn't phase me until they absolutely blew up my bone marrow with the excessive neupogen shots. It didn't phase me to feel weak, to take to bed. I was hellbent on walking and exercising no matter what anyone said, because even with cancer I had a very clear and real fear of atrophy--of waking up unable to move, unable to use my body. I learned to accept pain, and not to medicate it away. I learned that it is better to feel the pain than to feel nothing, and that is a lesson worth learning.

And so for almost 30 years, I have become an expert at modifying. I know myself and my body and I know my limits and my strengths. I stretch, I do pilates, I have taught my lopsided, one leg longer than the other and one hip about to break body, to balance itself. I take warm baths when the pain is too intense. I know when to take aspirin and when to just grit my teeth. I know something that I knew 28 years ago without realizing it, and it was something that I had learned when I was six:

You might have certain limitations in your life. Perhaps you can't ride roller coasters, or go to a club with strobe lights, or get dizzy, or eat or sleep erratically, or you might have seizures. Perhaps you cannot do high impact sports without your largest joints giving out. Perhaps you cannot do pushups without exacerbating the problems that remain in your post-cancerous chest.

None of these limitations are real limitations. They are not relevant in the scheme of a long and happy life. There are many, many things I can do. I can sit here, and tell myself, look! Look at your body. Look at how it works--most of the time. I mean, my quads are killer, I have strong biceps and shoulders, my butt is rounder and stronger than ever. I can do a wall sit forever. I can do a plank for two and a half minutes. I can watch my muscles ripple and pull on the hair that has grown back so auburn on my head. I can stare at this computer for hours writing about a car accident, after taking a break from my job as a professional researcher, and my brain never misfires.

I can tell myself this: You are 37 years old, and here you are, your small stiff broken crazy body hanging out at about 17% body fat, putting you in that "athlete" category according to the gym, no matter how far that seems from who you thought you were, but there it is, even after having two children. And I can see those children, the girl who has already lived longer than I did without knowing that her body or her brain might not cooperate, the boy who received the vast majority of the nourishment that he needed to become the hellraiser he is today through my cancerous breast, and I can relax. I can roll my eyes at my husband as he lovingly caresses the stretch marks that his first-born child brought to my hips, which obligingly expanded again eight years after the first belated growth. I know that he sees only happiness there, not grief. I know something that all too many people know better than I do.






In all these things, the epilepsy, the car accident, the cancer--I have been one of the lucky ones. There is nothing to atone for, nothing to prove. I can blend in anywhere. I am lucky. I am still here.

And so it goes. What I have learned is that not all wounds heal, and not all problems are solved, and sometimes realizations come too late. But even within all of that, it is possible to just stubbornly do things that you might not have been able to do, if fate had moved you an inch, if there had been a stick pointing up on the sidewalk, if you hadn’t tried, if you hadn’t done things anyway.

I’ve learned that it is possible to always be nine years old, waiting to fight in the leaves, convinced that the best colors in the crayon box are burnt sienna and marigold, laughing while you eat the candy that some stranger gave to you while you were wearing a costume, wondering how it will be next year, when things will be different, when life will open up around you like a promise, no matter how crooked or stiff or imperfect. I’ve learned to live inside that promise, the promise of turning ten. And so it goes, that I have turned ten again and again, 27 times, each one as glorious as the last.

Someone once said "the thrill is gone." But for me, it isn't. For me, the thrill will always be there. May it be so for you.