Monday, March 9, 2015

Day 1,640: A Letter to My Daughter: You Are Not Your Body

Yesterday was my daughter's ninth birthday. I intended to write this yesterday, as I have done for years for both of my children. But fate had other ideas. I was felled by a stomach virus so severe I lost more than 5 pounds in 36 hours. I haven't managed to eat anything except a piece of dry toast and a cup of Jello today. I stayed in bed for the whole of Lenny's birthday. She opened her presents in our bedroom. Gabe took the kids out to brunch and to a craft store and I was secretly glad they were out for so long, so they did not have to hear me getting violently sick so many times. I missed her birthday party. I felt a twinge of guilt about all these things, or at least something akin to it. And then I realized it might not really be GUILT, but regret for having missed it. And then, finally, I realized I hadn't missed it at all. I was here for my daughter's ninth birthday--I was just a little laid up. My husband might have had to decorate the house for the party, but I'm the one who planned ahead and bought all the supplies last weekend. I bought most of the presents, though he had to wrap them. I planned the party, he oversaw the chaos. I was here, alive whether I felt like it or not, to wish her a happy birthday.

So I had to wait a day to write this post for my daughter's birthday. I am still not myself. And yet, I am, and that is exactly what I want to write about today. I don't know if I will be able to explain what I want to say to my daughter in a way that makes any sense, but I am going to try. Perhaps the letter format works best for these things.

Dear Lenny:

Now you are nine years old. When I began writing this, you were four. And by "this," I don't mean this blog--I mean this letter I am writing right now. We've had almost five years together since this letter began. There are a few things that this writing process over the years has taught me about myself and the world that I think I have been trying to understand and articulate all of my life. I want you to know so many things, I want to be here to teach you so many things, but it's hard to know where to start. The easiest thing to do is just to start somewhere.

I want you to know that you are not your body.

I have secretly harbored this thought for more than 30 years, but it has taken almost five years of rambling prose to enable me to understand it.

Your body is an ever-changing part of you. There are things that will happen to your body. Other people might try to hurt you or use you by violating your body. Your body might betray you. Your body might stop working. You might be revered by some in part for your body. You yourself will take great pleasure from your body and what it can do for you. Your body will also experience great pain, and some of it will be worth it--such as having a child--but so much of it will not have any purpose but to bring you true grit.

I have often felt out of place because of how I have interpreted the things that have happened to my body because of cancer. The early-onset menopause was the hardest part; it affected my sexuality and that was so hard to bear, I realize now, because that was a part of MYSELF, not just my body. Does that make sense? It affected my desires, what I thought about, what I wanted to do, how I felt around my husband. It affected something that was inherently a part of ME.

But losing my breast, having only one nipple, being lopsided, losing my hair, getting skinny, being fatigued, being cancer girl or cancer mom or whatever some people think I am? I don't know that any of it has bothered me the way it was supposed to. The hair was the hardest--before it happened. I envisioned how different it would be to no longer be treated as the woman with beautiful long, curly red hair, I imagined that I was losing a part of my identity, my personality.

I was wrong. I lost my hair, and that was it. I felt exactly the same with no hair as I did when I had hair. Other people treated me differently, that's true. But that was their problem, not mine. My problem was having cancer. If someone decided to pity me or look away when seeing bald me in the grocery store, well, that had no impact on whether or not I remembered to get everything on the list. I didn't feel ugly, or unfeminine, or de-sexualized. I felt...bald.

I have never felt like the experience of cancer has taken away the belief that I should be healthy and vigorous. I have never held that belief, not since I was six years old.

Having 100 seizures a day did not make me feel like a different child. Kids becoming traumatized because they witnessed my seizure in class did not make me question the value of myself or lose my sense of humor. I did not feel like less of a person--because I was a little kid, and little kids often don't know any different than whatever is put before them. They don't think about how it is supposed to be, because they don't know.

My body was treated as something others would find pleasure in regardless of what I thought about it from the time I was very young. I did not feel less worthy as a person because of this. I have had to fight other people's bodies with my body. I never really "won," though in important moments I did get away. I was little and I am still kind of little and there is nothing wrong with that. Don't ever let anyone tell you differently. Your being petite might be a blessing and a curse in how people treat you, as it was for me, but it has nothing to do with who you ARE. On a related note, your athleticism is something to be proud of and to enjoy for how it makes you feel. If you lose it, you will not lose yourself. I'm telling you this because you are nine.

When I was nine, my world crashed in on me. One minute, I was happily walking home from school, waiting to see a friend. I was tiny and fast and played basketball and could jump rope for hours without stopping. The next thing I knew, my life was flashing before my eyes (it's true, it happens. and all I could think was That's it?) and I was sure I would be dead when I hit the sidewalk. I wasn't dead, but almost. I lost the ability to walk, to go to the bathroom by myself, to play, to jump, I had next to no rehabilitation and would experience lifelong pain and physical limitations. I understood that death was real and it would happen to me. I began to fear atrophy more than any other thing because now I knew what it was like. I was in a wheelchair. People stared at me. I was discriminated against, barred from getting an education. But I did not feel like a different PERSON. My life was wholly different...and yet, I was not.

I have carried that with me. I see that now. I did not hold on to an idea of myself as worthy in spite of the physical things that have happened to me, but because of them. I do not want you to have to go through any of those things. That's why I'm writing you this.

People will tell you things. They will tell you that you should feel beautiful, sexy, desirable, worthy, no matter how you look. You will get the message that "men love all kinds of bodies." I am here to tell you not to listen. You should not feel worthy because of anything having to do with how your body looks, feels, or works, one way or another. All of it will change. The body is transient, and fragile. You are not. I have heard it so many times: "You will still be beautiful." "He will still love you." I do not want you to fall back on those traps. Focus on what you think, what you find beautiful that is outside of yourself, what you love. Those are the things that matter for you.

People will tell you, or let you know in a thousand ways, that finding fault in yourself is the acceptable way for a woman to be. People will encourage you to constantly "overcome" the faults that you perceive in yourself. It will become en vogue for you to talk about yourself as flawed, and even more acceptable to talk about how you overcame your negative feelings about yourself. There will be focus on feeling "empowered." I'm telling you right now not to believe the hype. Life is too short to spend trying to prove a point. I want you out there in the world doing and feeling and thinking things, things that are outside of yourself or your physical experience in the world. Just do what you do, and don't go looking for validation. Know that it's already there. Also know that people might not like it if you know that. At times it might be more socially acceptable to be unhappy with who you are than to be at peace with who you are; save the time you could spend worrying about that and again, do something in the world. Make yourself heard.

What matters is that you remain yourself. You are worthy regardless of how you look, whether your body works correctly, whether other people make criminal decisions related to your body, whether he or she loves you. I do not want you to be slammed with the realization of your own mortality or physical vulnerability because something shocking happens to you. I want you to live with that knowledge every day, before, during and after the shocking things happen, and just keep doing the things you do as long as you can. Then, when you can't do those things anymore, do something else.

It's hard to see how life can change you and cement who you are. The other day I was telling your father that I will never know how cancer has changed me as a parent, because I have had cancer for most of my parenting years. And he was emphatic that I was wrong:

"No, that's not true. You had four years before cancer. You were exactly the same parent then as you are now. If anything, you are more yourself now, because you don't care about how it looks to other people. Cancer hasn't changed you, and I'm glad."

I don't know if that's true. What matters is that I live with a person who doesn't think I needed cancer to make me better, because I was good enough already. And I didn't need for him to say that, because I knew already that it was true.

I told him something else the other day, that I never related to how so many women lose a sense of themselves because of cancer. Of course, I have felt depression, sadness, anger, fear, and so many other things. But I have never wondered "what has happened to me?" I said that I thought that was because I can't remember a time when I didn't disassociate my body from my sense of myself. People assume that such disassociation is negative. I think there is a good reason it works as a defense mechanism. You are defending yourself, the part that no person or circumstance can strip from you. That is not to say that I do not feel very strongly with my body and make decisions for what I want to do with my body that are mindful and clear. I am very attuned to my body--after all, I found this cancer twice, when no one else thought it was there. But when something has gone WRONG with my body, when someone has WRONGED my body, I could separate that from my understanding of who I was.

I want you to hold on to who you are, no matter what happens to your body, and I hope that only wonderful and pleasurable things will happen to it, but I would be a different kind of mother if I were to believe that to be true.

Just hold onto yourself. You have been yourself since you were born and you are just becoming more of yourself, in spite of the rest of us, in spite of everything. At 18 months old when the daycare providers insisted on calling you Lenora, you told them otherwise: "I AM NOT LENORA. I'M LENNY."

That's what I want for you in this ninth year, which changed everything for me thirty years ago. I want you to know what that means. You will always be yourself. There's only one Lenny. Don't let anyone forget it.

I love you. Happy birthday-- a day late. --Mom


  1. Hello, I wanted to let you know my mum [Lulu] passed away, you featured her on your blog. She died, 1.33 pm on 23rd march.. after nearly a decade(9 years) of dealing with this. She developed brain mets, liver mets, bone mets and finally (and fatally) lung mets. ~ Hannah, her daughter.

  2. I am not used to the medium so I could not find out a way to private message you, apologies for the publicity.

    1. Hannah, I am so sorry for your loss and was so sad to hear of Lulu's passing. I reposted the story she shared with me in October of 2013. She was such a wise, funny, empathetic woman. She is gone too soon