Day 1,481: On "Why I Hope to Die at 75"

Today is October 1, which marks the beginning of breast cancer awareness month.

I believe that those who read this blog are already aware.

So, moving on.

I am writing today in response to a piece that has already garnered wide attention. Ezekiel Emanuel, brother of the Mayor of the city I call home, penned a piece for the Atlantic entitled "Why I Hope to Die at 75." Much has been made of the implications of his arguments. One could argue that there are years or even decades of life past 75. I could tell the author about my grandfather, who was forced into retirement at age 80, and they had to practically kick him out the door because he wasn't ready. We all have such stories.

I am actually sympathetic with much of what Mr. Emanuel has to say about quality of life, and our collective obsession with the idea that death is somehow optional or at least an abstraction that happens to other people. I think we often go too far in attempting to prolong the inevitable. On the other hand, I find it interesting that he seems to believe that prolonging life is the same as prolonging suffering. In the case of cancer, for example, he states that one should not receive treatment after age 75. The assumption is that cancer treatment involves too much suffering, and that one's family should not have to bear witness to such things (I have heard this too many times about cancer treatment--as if it is so horrible that our families will never get over having to deal with us when we were going through it and we would, I guess, be better off dead). Of course, there is nothing silent in the good night of dying from cancer that has spread throughout the body. One suffers with cancer either way--now, or later, or both. There is no quick and painless cancer death. But I digress. I am not particularly interested in making these arguments. I want to respond to one specific theme in this piece; it runs throughout, but is most pronounced in the following paragraph:

But here is a simple truth that many of us seem to resist: living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.

But here is a simple truth, sir. Many, many people do not have to live to 75 or older to live in a state of deprivation. Many are born disabled, sick, or infirm. People go through the injustices of illness, deformity, disability, and decline at every age and stage of life. We are born helpless. Some of us have lost the ability to do almost every basic thing in life--and we haven't reached 40 yet. Sometimes, the body, or the brain, simply does not work. Old age is not required for that truth.

Further, where is it written that we owe memories of vibrancy to our loved ones? The author goes on to discuss how he would have lived a good life by 75, seen his children and grandchildren, and then states that he wants these people to remember him as the able youngish man he once was. As if children love their grandparents because they are spunky. Sometimes, children deeply love their grandparents BECAUSE they are so old, and slow, and, well...interesting. As a child, the gray hair, the stooping, the fact that they just like to sit, the feel of their skin, these are the things that make grandparents special. These imperfections are part of what makes grandparents simultaneously real and impossible; in the words of some boys who are way too young to appreciate what this really means, "That's what makes you beautiful."

I'm saddened by the idea of the world Mr. Emanuel describes. In this world, our importance as human beings is dependent on various abilities--commodities, you might say--that we perceive that we have that offer value to others. Our contributions are born of energy, vitality, clear-headedness, health, quickness, creativity, humor, brilliance. One could argue that these things do not decline with age. But let us assume that the author is correct, and they do.

What of it?

Is there nothing to be learned from what the old, sick, infirm, and disabled can teach? Is there no lesson in empathy, perspective, slowness, resignation, stoicism, wisdom, and yes, even pain and suffering?

It seems to me that the qualities the author values are qualities that many people value in themselves because they aren't yet at the point where they have learned to value other things.

Sometimes, I lament my old, or, more accurately, my young self. I was hilarious as a child and a teenager. I was extremely creative, bright, and curious. I feel that I am still these things, albeit to a lesser degree. Looking back, I think I know what was happening in my youth. Life was hard; it's always been hard. And yet, as a kid, I had no control over that. What could I do? I used humor and creativity to get by, because honestly? They were all I had.

Now, I have the luxury of control, at least over some things. If I want to be boring, so help me, I will sit here and watch the world go by. No one can tell me what to do, not any more.

Back to the point--what is there to learn in a world in which no one survives past her prime? The idea that we owe our loved ones a memory of ourselves that is fit and healthy and happy and young is truly bizarre. Does the author really believe that in the face of illness or decline, people see nothing but feebleness, ineffectualness, and the pathetic? Sometimes, I think that my best memories, or at least my most important ones, came straight from being faced with the very reality Mr. Emanuel describes with such disdain.

If we were all to live in a world where illness, disability and physical imperfection did not exist, I would be denied the memory of the following:

The young boy who held my hand and told me it would be all right and that my mother was on the way after I was hit by a car at 9 years old and was left in the process of nearly dying in the street;

My parents turning my body so that I wouldn't get bedsores and lifting me onto the portable commode in our living room as if that was just part of every family's routine;

My friends who waited with me at the club because I couldn't go into the room with strobe lights due to epilepsy;

My 6th grade teacher, who was short and slight and had been a paramedic in the army, so he knew what to do when I had a grand mal seizure in front of the entire grade, and though I was unconscious and can't actually remember, I swear I can picture him throwing desks, chairs, and children out of the way and cradling my head in his hands;

The woman who looked at me with some disgust but patted my shoulder, offered me a Kleenex, and asked me if I was all right anyway, as I stood at the train platform vomiting all over myself in the wind and the cold of winter, and no one else stopped or looked at me but her;

My son, asking to kiss my breast to make it better, though it was no longer there;

My daughter handing me a stuffed turtle in the hospital, when I was having heart problems brought on by chemotherapy;

All the people who looked at my bald self as if that was the same face they had always seen, because it was;

and, things like this:

My husband, cleaning up after his grandmother on Thanksgiving, because she had had Parkinson's for more than ten years and she couldn't really walk and yes, she was old, and she didn't make it to the bathroom, and she soiled herself. Mr. Emanuel assumes that this was an indignity to witness, that no grandson should have to be in such a situation, that no wife should have to see her husband cleaning shit off the stairs when he should have been eating apple pie. But the thing is, this is what I remember. I remember being grateful to my husband's grandmother, for having had such a big hand in raising a boy who would become a man who would quietly and without complaining clean other people's shit up off the floor. I remember when I met him, when we were both 27, and he admitted to me on our first date, with no shame at all, that he lived with his grandmother, because she had Parkinson's and was recently in a car accident and couldn't care for herself, so he figured he should do it, because she had cared for him.

I remember a few months before she died, when she hadn't gotten out of bed in more than two years except to use the bathroom, and her mind was addled, and I sat there, talking to her about her daughter whom she said she had just seen though of course it had been years and years. I went along with this story, which I could barely hear because of what the Parkinson's had done to her voice, and I talked to her as if I knew her reality as if it were my own. And if I had felt any pride in my ability to relate to her in that moment, it was replaced with something else, when she grabbed my arm and looked at me with perfect lucidity and said "I'm glad he found you. Now you can take care of him." And she drifted off to sleep.

Who is teaching whom, exactly?

Isn't this what we are living for, not a perpetual state of alacrity, but rather a perpetual state of grace?

If we all died at 75, we would miss so much. I would miss the memory of my then-boyfriend's grandmother, with her paper-thin, translucent skin, who would stand at the kitchen sink washing plastic forks, who could speak English perfectly but just seemed tired of her second language at that point so she no longer bothered. I would miss the memory of how this woman would silently grab my hand as I walked past, and look at me with those wonderful old eyes and smile at me, and her tacit, silent acceptance of me was important even when I was 18.

If we only valued health, we would miss so much. I would miss the memory of a woman who could not move or walk, who had died and been brought back to life only to be in a medically-induced coma for a long time, a woman who could not cook, or play, or talk for long, but who nonetheless took naps with me when I was four years old and taught me that I could stop sucking my fingers and the world wouldn't come to an end. That woman was my mother. She was 29.

If we only valued happy memories, we would miss so much. I would miss the memory of my grandmother's death rattle when I was 17, of the terrified look in her eyes, that look of mortal fear, which is a thing that exists and that means something. I would miss learning at a tender age that the permanence of death is a shock even to those who have lived into the later years.

If we only valued a sharp wit and a quick tongue, we would miss so much. I would miss the memory of telling my daughter "Just wait" when her brother was learning to speak and had quite a stutter. I would miss the look on her five year old face when she understood that "just wait" was good advice, for that and so many things. I would miss the memory of all the older folks I have known who have taken such a long and circuitous time to tell me a story, as they got lost in their memories or forgot what they meant to say, or struggled to find the right word, and after the long time passed and the story came out, it was, to say it simply--worth the wait. Every single time.

If we only valued speed and physical ability, we would miss so much. I would miss the beauty of what happened last weekend, after I went apple picking with my family and stopped at a tiny diner in small-town Indiana, and a family came in, and they were clearly regulars. The old woman was using a walker and was very, almost excruciatingly, slow. The owner told them to sit where they liked and she smiled and said "I just don't want to be in anyone's way." And the waitress laughed and said "Oh honey you know we always keep the best table for you."

If we only valued people whose brains function at top capacity, who can walk, who are never sick or close to dying, well, I hate to say it, but I wouldn't have any friends at all. They'd have set me out to pasture thirty years ago.

The thing is, I don't want to live in the world Mr. Emanuel describes. I don't want to live in a world where no one is sick or old or aware of the fact that they're dying. I don't even want to live in a world where no one is feeble, bitter, or unhappy. I don't want to live in a world where everyone has all their limbs and other body parts and everything works perfectly. I don't want to live in a world with no walking sticks.

I want to live in this world, with its moments large and small, moments of real grace. I want to live in a world where people have seen enough of what the world really is to look at each other knowingly, without pity or sorrow, and silently affirm that when it all started, we were all beholden to someone else to survive, and it will be that way again, and again.

Day 1,471: Cancer Doldrums

At some point, somewhere down the line there, cancer got boring.

Yeah, I said that.

I have the luxury of saying it. I can be bored of cancer, because it is not actively trying to kill me, at least not that I know of, not now. But I felt the boredom in the middle of treatment. The appointments, the treatments, the tests and screenings and medication, the physical therapy, reading through the bills and dealing with insurance and talking to your boss and trying to act like this is just a normal part of life, it all seems so...tedious.

When you have an early stage cancer for which the three year mark is a supposedly magic number, and then it comes back after three healthy, fit and active years anyway, in addition to all the other feelings, you might find yourself just being kind of PISSED that right after you graduated to yearly visits you had to go right back to basics.

I remember feeling anxious for quite a while before each visit with my oncologist. I know many women who still feel this way today. I just went to my 3-4 month checkup (I went after 4, but almost stretched it to 5 until I got in trouble and they rescheduled me) last week. I was vaguely nervous the day before, but I told Gabe not to come with me and I just hung out there and didn't feel much of anything. I knew my onc wouldn't do any tests--no blood draws, no scans. He would have someone check my vitals, he would give me a physical, feel my breasts--the real and the fake--check me for lymphedema. I was there maybe 10 minutes; he told me we wouldn't go "chasing problems," and I know what he means--that we won't check for signs of mets because checking for signs of mets doesn't prevent mets and once it's there it's incurable. We don't have to say these things to each other anymore. I find myself annoyed at having to go to the doctor, and yet relieved when it's over. One thing I don't feel anymore is the kind of relief I used to feel, that most women feel, upon being told everything is fine. I don't cling to that notion anymore. Sometimes having cancer means figuratively holding your breath in between appointments, especially when you have something like TNBC for which there are no targeted therapies and so therefore no advice other than "try to be healthy" and "everything in moderation." I understand that people feel they have been given a little bit of their life back when they go to the checkup and get the all-clear.

I don't feel that way anymore. I mean, the all clear doesn't really mean anything. Just like the tests don't really mean anything. I was clearly healthy with no other symptoms but lumps that came out of nowhere both times I was diagnosed. Now, that doesn't mean that I am worried all the time--quite the opposite, in fact. The knowledge that it's kind of a crapshoot enables me not to feel anxious OR relieved. I've had this cough that won't quit, but that was after my strep throat, and my ER visit brought on by an allergic reaction to the antibiotic, and I worried about it for a few minutes, and brought it up to him, but I couldn't take that seriously. I told him: "I've had this crazy hacking cough. But you know, it's gotten better. I know it's better because I can talk to you. I couldn't talk last week. And it's been annoying. Because I don't get sick. I just get cancer."

And he said "You got cancer. Let's use the past tense."

The man has grown on me.

I mean, it's a joke by now, but I knew he would say it, and he didn't disappoint. He told me: "You look good."

I smiled, got dressed, dutifully made my appointment for January, walked the two miles to work. I posted a message letting everyone know I got the OK. I was relieved to learn I didn't need to visit a surgeon anymore. My last surgeon moved, and the first one hasn't seen me in a year and a half now, and honestly I am bored and tired of seeing multiple doctors all the time.

I'm tired of it, and that's why I haven't written much lately. Sometimes I am absolutely astounded when I think about the fact that I have had cancer, much less that I have had it twice. It doesn't seem possible, and yet I can hardly remember not being this person. I feel like my marriage to cancer has wilted on the vine and maybe it's time to take a lover or something.

Except, then, something called me back to reality.

Something reminded me of the initial fear and desperation and disbelief that accompanies cancer in its early stages.

Gabe, the guy who has never really had anything physically challenging befall him in his life, who is blessed with that metabolism and physique that guys half his age envy--Gabe suddenly had some really, really scary medical stuff going on. The main symptom was disturbing, then got more disturbing, and I had to tell him: If they are not listening to you, if no specialist can see you for weeks, you tell them that is unacceptable. You tell them how it is. He got an appointment with a physician's assistant. I went with him. She didn't even examine him--she went straight for the doctor who was too busy to see patients for weeks as soon as we told her what was going on, and he came in, perplexed. All of a sudden there were multiple tests ordered and scheduled--for that day, including a CT scan. I stayed with Gabe through the worst test and he told me to go back to work for the CT scan. We bonded later over how weird it feels for your body to go hot after they put the radioactive dye in your veins. He was pissed that they blew out one of his enormous veins with a failed IV. I opened the mail and rolled my eyes when I saw the bill for $8,000 for the three hours of tests. We waited. We told ourselves it wasn't cancer. We used stupid logic like cancer couldn't happen to both of us. We went online and looked up other possibilities. We tried not to worry about it. He worried about what it could be if it was NOT cancer and he went to the worst places in his mind. He tried to make me feel better, which is what sick people do with healthy people, and I should know, because I have done it all my life. I got moody and testy and then felt terrible about it because I was never like that with my own cancer, but I felt so helpless about his situation.

We waited.

And then we learned that he is fine. Though several doctors told him they have no idea what the hell was going on, which is not exactly comforting, except that it is, because saying we don't know what is going on but you don't have cancer is just about the best phrase ever heard in this family.

His symptoms left almost as suddenly as they came.

He is already bored at the thought of follow up appointments. He's not sure he'll go back. He told me that although he went with me, although he was there, he has no idea how I've done all the tests and scans and appointments and everything all these years, that it would make him crazy, that it took up too much of his time and that was just over a time period of one week. I said, I know. I did that, with a new job, and babies, and all of it. I did that after being pregnant and nursing twice and all the medical stuff that goes along with that. But I've done that all my life, since six years old with epilepsy, and I don't know any different. But you? You're the healthy one. I can't have you doing this too.

I just don't know how to be the one waiting and unable to do anything. And I guess that is the curse and the blessing with cancer. On the one hand, it's my life, and my mortality, and my disfigurement and the end of certain things I wanted with my own life like having more children.

On the other hand, at least it's happening to me, and not to my people.

Somehow, that's easier to take.

Day 1,457: Kindergarten Blues

Last week, my kids had their first day of school. My daughter started third grade, and my son started kindergarten. I expected to feel the urge to write something about that, as seeing my son off to kindergarten was one of the milestones that seemed more like a far-off dream in 2010. The second cancer diagnosis just made it more so, and it's hard to explain to anyone who hasn't been there (and luckily, it's rare to find someone who's been there) how it feels and what you think when you find out you have cancer with a baby and a preschooler at home. So many things changed in an instant--the possibility of us having more kids, the chance to keep nursing, and most of all, the assumption that the future was something we would all experience together. I remember thinking to myself "I wonder if I'll see him reach kindergarten."

And I did.



And I thought I would have more to say about it, but I didn't. I said what I could say: "You guys. I made it to his first day of kindergarten."

And then life kind of slapped us in the face, like it always seems to do, and I had other things to think about related to my son and kindergarten. So I wrote my husband this letter.

Dear Gabe:

I’m sick, and I really feel like shit, and I can’t talk at all and the antibiotics might be preventing this strep from going to my heart but they just make me feel worse in the meantime. So I’m writing you this letter instead of just talking to you, because I can’t. I just can’t talk for more than a few minutes.

It’s Augie’s third day of kindergarten. We have this issue before us, trying to decide if he should stay in the classical school he tested into or whether he should go to the neighborhood school. It’s so stupid that decisions like this matter in kindergarten. We both know that if we take him out of the classical school, he can’t get back in, or at least it’s unlikely. Some other kid will take that precious spot. I know after touring the neighborhood school that it is a great environment. I also know that Augie is reading 300 page chapter books and reading the newspaper to us in the morning and that he might not be challenged there.

I’m just not convinced anymore that it matters.

Now, I don’t believe he would be BORED there. My mother always said there is no excuse for boredom. I had gifted programming for one year for an hour a day in grade school. I can’t say I cared when it was gone. I learned to read at 3 and sat there in kindergarten watching other kids learn their letters and I was not BORED. In sixth grade I completed the impossible geometry extra credit assignment that my brother’s advanced 9th grade class had been given, and I was the only one who had ever done it. I was probably learning some kind of basic math in my actual grade. I’ve said it before, no school will beat the smart out of our kids. It didn’t happen to me.

Now, I know times are different. But more than anything, place is different. I grew up in a working class neighborhood. No one was stressing about our achievement. We were expected to be polite, focused, respectful, productive, friendly to the neighbors. You grew up in some kind of weird conglomeration of places raised by a whole host of people and the more pressing concern was your childhood hunger, not school. There’s some sense that we live in Chicago and there are so few public high schools that are decent and we are not Catholic and private school can be insanely expensive and it goes against our beliefs anyway and the things that happen now matter and you know what, the thing is, I’m tired of it.

Kids at the neighborhood school score well on tests. Not ALL of them like in Lenny or Augie’s current schools, but enough of them. There’s no reason our kids wouldn’t be among them. I could go on and on about how Augie will never get to play sports after school if he doesn’t get home until 5, how I don’t want him riding a bus by himself with no one to talk to for 45 minutes, how hard it is with conflicting schedules and working parents and everything else. I could give so many reasons one way or another. But the real reason I want to pull him out of this school is entirely selfish.

I can explain, but it will take me a minute to get there. Normally, I wouldn’t be home to see my kids after school and the time that someone picked them up would matter to them but would affect me the same. But I have created this opportunity for myself, in spite of some fairly insane obstacles, and I want to enjoy it. I am the one in the family with the job that has taken precedence, as I make more money and do something fairly specialized. I am not saying that to be shitty, that is something you have said yourself. You could have done more with your career and you haven’t so that I could. Neither of us is a world-beater. We can leave that to someone else. But look. In the last nine years, I have spent 18 months pregnant. I have spent 18 months nursing. I have spent 10 months in chemotherapy, 2 months in radiation, months recovering from three breast cancer surgeries. I have continued to work full time through everything, gotten myself promoted, and didn’t even blink when I told HR at the BRAND NEW JOB that I would have to start later because I had to have a mastectomy and begin chemo for recurrent cancer. I have worked through stuff that marked the permanent end of working for many, through necessity or choice. I don’t want to stop working. There’s no reason to do that now.

But.

How did I end up here? I work from home several days a week regularly and can work from home almost whenever I need to, and I am not a freelancer and I do not work for myself, and I do not work part-time, and I did not take a pay cut. I work for a company with excellent benefits. I have a strange, obscure and nerdy job. I get paid well to do this work. It’s luck, that’s the way I see it. But you know, I made this for myself, for us, too. To me, one of the biggest middle fingers to cancer, and the mommy wars, and people’s attitudes about elitism and ambition and all the things that are supposed to mark success, is me doing this in the midst of all this. I’m not asking anyone to believe I am competent or worthy ANYWAY (in spite of being a woman, a mother, a cancer survivor, someone who went to a public university at night, whatever). I am saying look. I am competent and should be recognized as such.

And now I want to enjoy what I’ve built here.

We fight about housework all the time. I am resentful that I do work the job I do and travel and seem like one of those classic “dads” on the one hand and yet also do the laundry, go to the grocery store, plan and make all the meals, clean up after everyone and all that just like a “mom.” I am alone all day for long stretches of time and I know you envy that, but it gets tiring. So my flexibility is of great benefit to us, with some sacrifices from me. The thing is, even though it’s tough logistically, I really like having Lenny home after school. I am still working, and she needs to let me do that since she’s home so soon after 3 pm, but we can have a snack together and talk for a minute and most importantly I know she is there. Doing her homework in her room or downstairs. Whining about something. Wondering when Augie will be home. Playing. I don’t care if she talks to me. I hate the idea that Augie gets home, we make dinner, and then it’s night. I wouldn’t hate this if I still had a job that required me to be at work downtown every day until then anyway. But the point is this: I don’t. I have this. I have the opportunity to both work full time and pick my kids up from school three days a week. It’s hard, and I travel, and sometimes feel I’m losing my mind. And on the days when I do go into the office and especially the weeks when I travel, the logistics of two kids in two different places with two different schedules seems almost impossible.



The point is this: how long will this last? How long will the kids still want to play together? How long will they want me to make them a snack and talk about their days? How long will I have a job like this? Maybe a few years, right? So I want those years. You know I don’t know how many I’m going to get. Be pissed at me for saying it—I don’t care. I want to see my kids walking home from school TOGETHER. Even if they’re not at the same school.

This strange series of events makes it so that they can go to different schools and still get that—but not if Augie stays where he is. Maybe he will get into Lenny’s school next year and this will all be moot. But even if not, I’m not sure it is really that important. Augie is so much like me. He will find something else to occupy his energy. Hell, Lenny would too—she might be frustrated by not being challenged, but maybe not—maybe that’s a skill in life, learning how not to be bored and how to recognize other people’s strengths and your place in a larger society where not everyone is like you. It’s how I learned that I was smart about many things, but writing most of all. Math too. I was competent at things like art and music but nothing special. Other people were better and smarter and more talented than me about a million different things. That’s not a bad thing to know. I learned how to learn, and what is more important than that? These kids already have that. I mean, I think back to high school, which was extremely rigorous, harder probably than my grad school, and I honestly don’t remember working very hard. I was in AP classes and I did a million things but I also kind of chilled out and didn’t care if I got a B or something. It wasn’t just because it was a different time. I knew a lot of people who were more success-oriented, as kids are today. My best friend says the only time she ever ditched a class was on accident when she had the date wrong for the PSAT or something. And there I was, barely showing up for AP English senior year (and still getting As) and ditching to get to second base with some boy in some abandoned stairwell somewhere in the 9th grade.

We both turned out fine.

But I know which type of person Augie is, and so do you. You married me. You must see something good in it.

Let him come home and get on my nerves and make it hard to work and ask to play video games. Let him be the only child on earth who just wants the marshmallows, no hot cocoa please. Let him sit there reading comic books. I don’t think it will ruin his future. If his school let out at 3 and he was home before 4, it wouldn’t be that big of a deal. I just don’t want him coming home in the dark in the winter. When I’m working, I work. If I can, I take a break, for 5, 10 minutes. I throw the football around with him. I help them with their homework. I help Lenny organize. He’s older now, he’s not three. If I’m on a call I can tell him to read or I can give him his bat and tell him to hit some balls against the garage. I can send them outside to the back yard to play together. I don’t have to watch them every minute. He’s so damn loud I can hear everything from inside the house.

How long until they don’t want any of that anymore? How long until one of us loses a job or none of this is possible? Parenthood is a selfish beast. But I don’t feel guilty about any of this, about anything. I know he’s been at daycare his whole life, and he’s loved it. It’s different now and you know it and I know it.

Lenny rides a bus for 15 minutes and gets home at 3:15. He rides a bus for 45 minutes and gets home at 5. He can do it. He would be fine. He would do well and make friends. He would be challenged.

But he wouldn’t be here for much more than meals. And for most working parents, that is how it is. That is how it was for us for years and I never felt guilty and I know our kids were fine. And don’t get me started on the people who say that “someone else” raised our kids because they were in daycare. That is just complete bullshit and is something that is only said to mothers. I’m sure no one has ever told you that you had a job in IT, therefore you didn’t raise your kids. But we have a different opportunity here. We can never give them summers off, but looking back, we could say that at least for a few years, the worst thing that happened was that they were doing too much of nothing rather than too much of something.

What do you say?

He said yes. We initiated the transfer this morning. Augie should start kindergarten at the neighborhood school tomorrow.

Day 1,535: Reading Minds

Me, reading in my grandparents' back yard when I was 13 years old.

My kids are both readers. My daughter learned to read when she was 3, as I did. No one remembers teaching me how to read. My mother insists that I could just do it. This doesn't seem possible. Reading is not like walking, or eating. You don't have to do it to survive. Someone has to teach you.

I distinctly remember the hand I played in teaching my daughter to read. She was learning letter sounds in the Montessori method. She was sounding everything out: t-h-e. It drove me crazy. I knew something about my daughter that maybe her school didn't know. She is one of the only people I have ever met who has a photographic memory. I once wrote about her, "your perfect memory is one of the things that makes you who you are." I knew that when she was 15 months old and she pointed to a photography book in my mother's house and said "Signs," which is the name of the book. No one could believe it. Someone said, well, she must have seen that group of symbols before and heard someone say the word Signs and figured out that's what it meant.

Right, I thought. That's reading.

So I got frustrated, as I so often do. It is one of my greatest failings, this impatience. I couldn't stand listening to my kid trying to make English into a phonetic language when it is decidedly not a phonetic language. I had been reading to her all her life, as had so many other people. We taught her her letters over Christmas break when she was 21 months old. So one day when she was 3, I said to her: "Don't sound out these words. Just remember them. This word, these symbols, they say THE. Just remember it." If she had been a different person, it wouldn't have worked. But it worked. She could read anything.

But that doesn't mean that she should read anything, or that she wants to, or that she's ready for all those words out there. It's hard to find books for a kid who can read past the 12th grade level but who is only 8 years old. All the books for teens seem to be about vampires and sex and vampire sex. The Trixie Belden mysteries that I grew up on, that we still have and that I still read, have never captured her interest. She only got through the first Harry Potter, and decided it was too scary. She loves books that bored me to tears as a child: Black Beauty, Heidi, A Little Princess. I was reading Robert Cormier books at her age. My favorite book (oh, the irony!) as a child was The Bumblebee Flies Anyway. Because why wouldn't you love a book about cancer and medical experiments and suicide in third grade? You know, youth--when life is such a fancy.

Youth, when everything is so, so hard, and no one talks about it, so you read about it instead.

Lenny has read every classic "children's" book out there, and these books hardly seem to be children's books at all, not in the way we talk down to kids today by thinking we have to write like we think they talk and assume they can't understand big words or learn to use a dictionary. In these classics, the kids are almost always orphans. Their lives are almost impossibly hard, so they make up these fanciful worlds or they get by with their moxie and sometimes they fall in love at the end and supposedly end up happy but it always seems false and forced like the author just didn't know what else to do. She's read the Ramona books and all kinds of other books and I was beginning to get stumped trying to figure out what to get her to read, and then she read The Lion, the Witch, and the Wardrobe for school last year. She became completely entranced with Narnia and has now read all seven of the Narnia books at least four times. Just like her father. I have tried to read The Voyage of the Dawn Treader, but people, I just don't CARE. Fantasy books never interested me. The Lord of the Rings? God help me. She really wants me to read these books so we can talk about them, and I've really tried, but I have had to tell her that people are different and like different things. She didn't like Trixie Belden, and I don't like Narnia, so we will need to find something else to agree on, and she seems to take this pretty much in stride.


Lenny, reading under a tree while her brother played baseball in the park.

I've found something we can agree on, but I'll get to that in a minute.

My son is a reader too. I thought it would never happen. I got frustrated that he didn't practice reading in school the way my daughter did, because the teacher said he always "chose" math, and I said, well, I want both kids to do all the things, not just the things that are easiest for them to do. People told me boys are different. Well, Augie is different, that's for sure. Different than all the other boys I know. He sat there in silence for an entire hour last night because he lied to me about washing his hands and no one gets away with lying in my house, and he gets so stubborn and impossible he punishes no one but himself, and it's hard to be his mother, or his father, sometimes. I remember hearing stories about how a certain child might have her will broken by her parents, and I remember my mother laughing, and I know she taught me that my impossible and incorrigible will would not rule our house, and so I don't feel guilty, but I get tired of the yelling.

Anyway I was frustrated not because Augie was taking longer to read, but because I was pretty sure he could read and just didn't feel like admitting it. Gabe didn't learn to read until he was 6 and my brother refused to read until age 7, though all of us in the entire family feel like that is kind of a lie. So I didn't really care when my kids learned to read, but the stubbornness was a bit much. Augie would read the sports page soon after his fourth birthday. People would say, oh, he is just looking at the helmet icons and recognizing them. Sure, sure, I would say. Then he would proceed to tell me the scores and tell me about things that had happened in the games he had not watched but that he found out about through READING THE PAPER. I bought him books about football. I read Bob books with him. He got bored and frustrated and wanted us to do it for him (he would lie on a chaise like Cleopatra allowing others to feed him grapes all his life if we allowed it) and so I gave up on it for a while. And one day he just started reading to me. I think he got tired of pretending. He could read his sister's chapter books. He was put in charge of reading to the class. He is now reading all these Star Wars books and some of them are literally more mature than much of what I read, especially the 700 page comic books with tiny print and extremely complex story lines. I don't relate to this at all. I was better off with football. He is reading Lenny's Little House books (she has read all of them, including the ones written after Laura Ingalls Wilder died), and I'm glad they can talk to each other about those books because again, I wasn't into those. I read poetry when I was a kid.


Augie, reading to his preschool class.

When I was in second grade my favorite book was The Witch of Blackbird Pond, but Lenny wasn't into that one. I read books with names like Fast Sam, Cool Clyde, and Stuff. I read books about people who lived in modern times in real cities with real problems. The only two Judy Blume books I liked were Tiger Eyes and Forever. I thought it was realistic the way the girl felt about her father dying in Tiger Eyes, much more realistic than the crap that was being spouted about wanting your period in the other books. Forever seemed somewhat realistic, though how would I know at age 10? I distinctly remember telling myself that no matter what happened in life, I would never have sex with someone who named his penis.

Well ten year old self, your 39 year old counterpart is here to say that at least you kept to that promise.

Sometimes I think we don't need to bond over books, because it is enough to bond over loving to read books. We are old school over here, no matter how much we love our technology. We don't have Kindles and we read the newspaper. Still, Gabe can go on and on with the kids about Star Wars and Narnia and I feel like I must be missing something. Maybe someday Augie will like Harry Potter or Trixie Belden. Maybe he won't want to read about horses and American Girls. Will either of my kids have a bookcase full of poetry and an entire library dedicated to genocide studies when they are grown? Is that a legacy I even want to leave?

Recently, on a whim, I picked out a book called Ruby Holler by Sharon Creech for Lenny. Creech's books were all written after I was grown, or at least after I was 14 or so, so I never read them. Lenny LOVED that book. I ordered a bunch more of her books. Lenny will re-read the same book over and over and over and I try to convince her to try something new. These Creech books have been sitting in her room. I made her bring them on vacation. She sat there re-reading Little House and Narnia. So, I decided to take one of these books with me on the one beach day we've had so far, which was Monday. Since then, I have read three of these books. The first was more of a coming of age story about friends and boys and I understood why maybe Lenny didn't care. The next was also a coming of age story but it was about sailing and adventures and secret code. I practically forced my daughter to read this book and she was all OH OK MOM, WHATEVER. Until later that day when we couldn't pry her away and she looked at me and said:

"Mom. This book is FASCINATING." And we started to go on and on and the guys in this house looked at us like what are they going on about? And I thought I had finally DONE it. I had finally found the thing we could bond over. So I read the last book of hers that we had brought with us, the one that won all the awards: Walk Two Moons. I started this book last night and finished it this morning. I want my daughter to read it and I don't.

Why are the mothers always leaving? Why are the mothers always dead? Why are the fathers always lost in the wake of their absence so much so that you want to reach into the story and tell them to GET IT TOGETHER, there is a CHILD involved, stop making this be all about YOU?

Was childhood always that sad?

And of course, it was. I realize that I have done a great disservice to anyone who reads this blog who thinks they have learned anything about me by reading it. I have never written about the hardest and most formative things. My biggest family secrets are not really secrets at all, as my closest people know, but I don't write about them. I have written about some things, but there are huge gaps, and some people know why. I have written some about Gabe's childhood, and people find it so unbelievable, but I don't, and I never did. I told my brother that it is strange what Gabe and I have in common as far as family is concerned and he said, really? I don't think so. Maybe you knew that about each other when you met. Maybe you could tell.

My brother who didn't want to learn to read became a writer and my husband reads fantasy and I read reality and our son reads epic battles and my daughter reads about orphans. The parents in this family have told ourselves that come hell or high water, our kids will never have the types of hidden stories that we have that make us who we are. We will claim the adversity for ourselves and let them have their childhoods unfettered and carefree.

It's a fiction, and we know it. It's a story we tell in the hopes that it might come true. No one here expects a happy tale, but we would like it to be interesting. We would like to tell each other the story arc and choose our favorite characters.

I once wrote a poem for my husband, who sometimes wonders where my stories are going and if they are going to end. It was a poem about what I had learned from him about marriage. I could not help but get the last word in, so I closed with what I hoped he had learned about marriage from me:

The plot of the story is not the point.
The point is, I am telling it to you.


Gabe reading The Economist while waiting for me to get chemo.

Day 1,530: KatyDid 39

Five birthdays.

I've had five birthdays since finding out I had an aggressive form of cancer.

I've had two birthdays since finding out I had cancer...again.

A year ago, I was recovering from the chemotherapy I received the day before my birthday. I had had less than a month to get used to my mastectomy.

Four years ago, I was at the tail end of AC chemo and I was skinny and tired and working full time and throwing a big party.



Twenty-nine years ago, I was born again into my tenth year, an age I couldn't have foreseen in October the year before, when I learned that death was real and walking was not always possible.

Eleven years ago, I spent my birthday in Maine with my boyfriend of four months, and I didn't know then that he already knew that he wanted to marry me.



Eighteen years ago, I went out to dinner with my boyfriend of more than three years, and I didn't even order a drink, though my mother gave me wine glasses as a present, and I still use those glasses today.

Eight years ago, I spent my first birthday as a mother.

Five years ago, I spent my first birthday as a mother of two.

Sixteen years ago, I woke up in my apartment that I lived in by myself and paid for by having two jobs, including one that led me to lie on a cold basement floor with a blow torch trying to fix an industrial boiler, and I loved it, every moment of my solitude and the things and the moments that were mine alone.

Twenty-three years ago, I got my driver's license; my best friend threw me an amazing party, complete with dozens of pictures that kids drew of me, two dozen roses, my first opportunity to spend the night with a boy, and the whole thing was a complete surprise; and I was allowed to spend the day alone with my boyfriend at his parents' cottage in Michigan (??).

I suppose I could have done things differently. I suppose things could have gone differently. But I didn't, and they didn't. While I would trade cancer away any day of the week, I wouldn't trade the rest of it, and now cancer is a part of it too. I've had many more birthdays than many people. I am now at an age that people pretend to be as they move further into the 40s that I've been dreaming of since 34. There are so many people who have accomplished so many more important things than what small things I have done, and they have done them in less time and with many more challenges.

Six years ago was the last birthday I would have without having written any of this.

And this, this writing, is the one thing I have always done, without feeling like I should be doing something else, without worrying about whether I'm any good at it, without caring if anyone read it, without it seeming like work. I've had 39 years of stories to tell and a way to tell them. I hope to have many more, but I know I might not. These years are something that for all intents and purposes should never have come to pass, not considering everything else that's happened.

So just wait until KatyDid 40.

It doesn't seem so impossible now.

Day 1,525: The Times I Didn't Cry

Maybe one day, I, and the people who love me, will look back on my life and feel it is defined more by what I didn't do when I was expected to do it than by what I did do.

Like all those times I didn't cry.

My kids had their last day of summer camp/school on Friday. For the last six and a half years, we have walked one or both of them to that Montessori school every single day. Gabe cried in the morning on the way over. The teachers cried when we picked them up, joining right along with Gabe and his crying. I didn't cry at all, and not because I didn't love the school, and not because I wasn't thinking about how my kids are getting older. I didn't cry in part because I just don't cry. It's not a thing that comes naturally to me. But that oversimplifies things. I didn't cry because I wasn't sad, I wasn't heartbroken, and I wasn't even sentimental.

I was happy.



I'm excited for my kids as they move on to new things. I've lived my life as if there is always something else to do, another step to take, another phase to move into, and I don't look at parenthood any differently. I don't cry thinking about their baby years; in fact, I don't even MISS the baby years. I don't wish I could hold them again when they were that small. I think instead about how they learned 98% of all the things they would ever need to know in their lives in those first few years, and how amazing that is, considering how helpless they were at the time. I didn't cry last weekend when Augie lost his first tooth, so much earlier than Lenny did, and we were all excited for him. Gabe cried, of course. And luckily it was me, not him, who put Lenny to bed that night. She looked at me and asked me if I had any dollar coins. I looked hard at her and said no, and why would I have them? Oh, no reason, she said. I was just wondering. I mean, mom, what if the tooth fairy forgets or something?



I could've cried to learn that my 8 year old no longer believes in that magic. I could've cried over how she tried to play it off like she still did in order to shield me from the truth. I could've cried over how she was trying to look out for her little brother, however imperfectly. But I didn't. I smiled. I told my mom about it the next day and she sniffed, clearly tearing up; I could tell even over the phone. And I said "Well. She's eight and a half." And what I meant was, now she can play the game with us.



I didn't cry when they were born. I didn't cry when I found out I was pregnant with either of them, even Augie--and I never expected that it was possible for me to get pregnant again. I haven't cried for any of their transitions with schools and child care centers. I can't think of any milestones that made me cry. Of course, this doesn't mean I haven't cried over my kids. I cried a whole hell of a lot when I was first diagnosed with cancer. I cried just from looking at them. The whole thing just broke my heart, to think what I had to give up, what I had to stop doing, what I might miss. I cried when I saw other people's children and teenagers. I just cried and cried and I felt like someone else.

I cried then because I didn't know how it would be, but I knew it would be bad; I cried because the change that was coming was complete bullshit. I cried because it's hard to think about dying for more than a few minutes without crying, taking drugs, or doing something really drastic, and crying was drastic for me. I cried at other points in their childhoods too, but sparingly.

Cancer brought out the crier in me. Lost loves have done the same, but only one of those even compared from a heartbreak perspective. Nothing much else has led me to cry. I have distinct memories of other people crying and realizing it would be normal for me to do so too. When I graduated from high school, my best friend cried and cried. I'm sure it was sadness and happiness all mixed together. I didn't cry. I smiled and laughed and thought about how long I had known her and yet I couldn't wait to get the hell out of there and I talked to people about how we would always write and call and attend each other's weddings even though I knew it was a lie. I only ever saw my best friend from college cry one time, and that was when she walked away from me when we graduated. I looked at her and knew I would miss her--but I didn't cry. I didn't cry at my wedding. Well, a single tear fell when my brother read the poem he had written for us, but everyone else was pretty much bawling in the aisles. I didn't cry over epilepsy, or my car accident, or over losing my breast. I didn't cry when I left for college or when my mother said goodbye to me. I didn't cry when that kid put a gun to my head--I didn't cry then, and I never cried about it later. I didn't cry when I was assaulted--I never cried over any of that, not ever. I cried when I had my head shaved back in July of 2010, but only briefly. I was exhausted from chemo and I weighed 111 pounds and I was convinced I looked like a boy, but this expression of resignation is the one I've always worn, and by always, I mean...pretty much always.



Sometimes, I wonder if there is something in me that is missing. Sometimes, I envy those who can cry so freely, like my husband. For a while there, I thought cancer had changed me, but the idea that cancer changes people is more convenient than it is true. Cancer made me cry for a while, but then I found myself still alive, and I found that I was still the same dry-eyed person. Cancer did not make me sentimental. It gave me reverse nostalgia, or...did it?

I've always thought--always, for as long as I can remember--that it would be wonderful to be old. Not just because I could just finally be the stubborn cantankerous person I really am deep inside and that would be a wonderful way to cap off a life well lived, but because of something my mother once said to me that I secretly agreed with, that I realize makes us different than some other people. She is probably a social loner like me. If you don't know what that means, well, you might not know us. My mother once said she always wanted to be old, living alone on a mountain somewhere, looking at the sky and knowing that everyone was all right. They didn't have to be there. Just knowing it was enough.

I was about 8 years old when I heard this. And I thought, me too.

I still think that. I can't cry as things change and move on because that's all I've ever wanted--to witness that happening, or even just to know about it. I never thought I would live to see my son reach kindergarten, and yet, he's going to start kindergarten in just a few weeks and I don't seem to be going anywhere anytime soon. Maybe when I drop him off at the door, I will cry. But it won't be because my little boy is getting so much bigger. It will be because we made it, both of us, and that means there is the possibility that we will keep on making it, to the next thing, and the next, and the next. These days, if I cry, it's not over what I've lost, but rather over how glad I am to be one step closer to the summit of the mountain, scared and breathless but not looking back.

Day 1,512: The Dog Days

This summer is coming to a close. It hardly seems possible. Didn't summer just begin? How can everything start and end at the same time? Why are we always coming and going? I remember summer stretching before me as an endless series of empty days, but empty in the best way. I remember how much there was to do when I had nothing to do. I work full time and can't give that kind of summer to my kids. Sometimes, I feel guilty about that, but most of the time, I don't. Sometimes I wonder how their summers differ from mine, which exist in some kind of hazy sepia in my mind but were probably really technicolor Koolaid in real life.

I wonder, so I decided to ask.

I asked my kids what they love about summer. What is it about summer that's different than any other time of year, what will they remember?

And they answered me.

Lenny said: going to the pool. going up north. catching fireflies. staying up late-ish. having a lot of time to play outside. no homework. mommy's birthday! riding my bike. seeing my summer school friends. parades. freeze pops.

Augie said: eating corn. waking up later. swimming in the lake and going to the beach. fireworks. popsicles. going to summer school together (with Lenny). minigolf. Daddy's birthday. also, I want to play flag football. and this summer is better than last summer because last summer I was only 4 and Lenny was 6.

And Lenny corrected him: Um, no, I was 7!



And then Augie finished with this: in a few weeks at the end of the summer it will be my very last day of Montessori. on your last day, you get to do whatever you want. you can do big thinking work. or read. or draw. you can do anything. But only on the day you're leaving forever.

OK. Well, what can I say to that? What is there to add? So, I asked Gabe, as he ran around outside cleaning gutters in the rain. What are the best things about summer?

And Gabe said: hammock time. sudden downpours in the sunlight. going from feeling like the humidity is a powerful fist in your face to the soothing cool of the air conditioning. mowing the lawn. sand castles. the clothes Katy wears that show off her legs.



So then I had to think about my own answers. I had a harder time. I guess when push comes to shove I would say:

fruit. the way it's so much cooler in the early mornings when I take my walks. the evening light in June. the beach. freckles. realizing I feel kind of insecure wearing a bikini again and it's because I've gained a little weight, not because I lost a breast. memories of other summers. my front porch. sandwiches for dinner. no socks. no shoes. putting the laundry outside to dry. rainstorms. other people's patios.

And then, there's this:

the best part about summer is this summer, specifically, being what it is. The best part is what my family didn't say. No one said, well, it sure as hell beats last summer. No one said, finally, a summer without cancer! No one reminded me what was going on a year ago. Their minds were lost in other thoughts.

And though my mind was not lost in other thoughts, and I did remember and think about what my family didn't say, now I can know this: I have given my family the kind of summer I remember. Maybe we have had those kinds of summers all along, no matter what else was happening. My children have had summers just like the ones of my childhood: colorful but already faded, busy and lazy, stubbornly placed outside of the real world, full of nothing more than the memories you'd like to keep.