As I think about how to begin an Easter blog, I can't help but start by saying that those of you who know me well know that I am not a religious person. On holidays such as Christmas, this is not really a problem, as the themes of family and giving to others and generosity and empathy don't have specific religious connotations. While we exchange gifts and have our own host of Christmas traditions, I don't feel that we are particularly commercial about the holiday or that it's hard to explain to our kids what Christmas is about. I have explained to Lenny about Christ's birth, and why that is important in our culture. I'm probably one of the few non-religious folks out there who's read the Bible cover to cover, so I can handle that.
Easter is entirely different. We dye eggs, and do Easter egg hunts, and I buy candy, and we get together with family members whom we don't see very often. But when I told Lenny that Easter is not really about candy or bunnies at all, she asked me what it was really about, and I was at a loss as to how to explain it. In part, I am afraid to bring up death with her at all right now. We are reading Charlotte's Web, and I don't want to get to the end, because she is so sensitive about death due to my cancer (even though we never connected those two things together for her, she's not naive about it). But I also just have no real words to discuss resurrection, to open up concepts that will bring so many other questions about what our familiy believes.
Normally I enjoy these types of challenges, but honestly I'm just tired, tired of the personally morbid thoughts that those types of conversations that we as parents have a responsibility to have with our kids bring into my consciousness right now. So I let it go for this year. I suppose that's forgivable. We had a wonderful holiday. I gained three pounds in one weekend from all of the food--and candy--that I've consumed. Augie did a great job on the egg hunt, considering this is the first Easter when he could walk. Lenny read the note from the Easter bunny, counted the eggs, helped her brother, picked out her own outfit. Cancer seemed so far away, even though it isn't, considering that mammogram I have coming up on Thursday. I honestly don't know how I'm functioning on any sort of level that doesn't involve obsessing about that scan, but somehow I am. I try to act as if cancer's in the background in our lives, as if I've been given some new life, resurrected as some different, healthy, short-haired woman, but as I've said before, there are always reminders.
We were going through the Easter pictures and I remarked that my hair looks so brown in pictures, though in person it looks red. Lenny said, I really hope that I never get cancer. I tried not to wince, Gabe tried not to shed a tear. I said, why, because of your red hair? But mine is the same color, it just looks different since there's not much of it, and mine was always darker than yours. Yeah, she said, I guess. It's not really about the hair, and I know that. She looks at me and thinks that cancer made me different, that I am a different mom, and she doesn't want that to happen to her. I'm glad at least that she isn't yet afraid to voice those concerns.
It can be hard to talk about these things without breaking down, especially when in the back of my mind I wonder if this is all some big cosmic joke, this hair, this weight gain, this health, and if I will find out in just a few days that I am going back to do it all over again. Of course everyone tells me, but you caught it early, you saved your own life, you are stage one, you will be fine. I hope so, but I don't know so, and no one else does either, no matter what we tell ourselves.
I've been thinking about this a lot, this way that we need for cancer to end on a positive note. And I do mean the collective "we." Obviously I need to believe that, or it means the end of my life, and my family and friends need to believe it because I am important to them. But as a society as a whole we seem to require it, to focus so much on the survivors, that others can be pushed aside, willfully forgotten, even resented for not being able to win the fight. It is grossly unfair.
In the last week I have had the unfortunate opportunity to learn what survivor's guilt means. I always thought that it had to do with feeling guilty that you are alive when someone else in the same situation has died. That's not it at all. Survivor's guilt means that you feel guilty that you are glad to be alive, that it isn't you who has died. It makes you feel like a really terrible person. It feels unforgivable.
Last Sunday, a team member from Row passed away. She was 43. I never had a chance to meet her, because she has been very sick since I started rowing. Four years ago, at age 39 she was diagnosed with Stage one breast cancer (meaning no lymph nodes involved) and she did a lumpectomy, chemo, the whole thing. She later found out she was BRCA positive and had a double mastectomy. A year later her cancer returned anyway and metasticized throughout her body. She left behind a husband, a five year old daughter, a lot of friends and family. Her name was Cindy Gerstner and she really seemed like such a wonderful person from everything I heard about her. I felt very sad and angry about this, and guilty that I couldn't attend the funeral.
But I also felt like a completely shitty person for how much it scared me to learn the details of her being stage one and having a tragically severe recurrence so soon after she ended her treatment. I felt terrible thinking "I hope that doesn't happen to me." What right do I have to make this tragedy about me, even during that split second before I stop and remind myself that this is not about me and my shit but the end of the universe for someone else, the end of a childhood with mommy for a child who isn't mine, the end of so much for other people--not for me? How am I any different than all the people who turned my cancer experience into something that had to do with them, who used it as a way to reflect on their own lives, who shunned me or ignored me because just looking at me scared them? God, it made me feel shallow, and hollow, and weak. I feel like a heel for writing about this here at all, because by doing that I am making it worse, and I am using a life that isn't my place to discuss for some purpose of my own. I don't mean to do that. But I get it now, this guilt. And I am truly sorry for the loss of Cindy Gerstner. The Tribune ran a very nice piece about her that I would encourage others to read: http://articles.chicagotribune.com/2011-04-20/features/ct-met-gerstner-obit-0421-20110420_1_rare-fish-species-cancer-survivors
I thought I was somehow above this notion that survival is the only acceptable cancer solution that we can handle. I thought that the way I have contemplated my own death and even planned for it in some weird ways protected me from the steep denial that I still feel about that concept. I wish that I believed in some kind of life after death, some kind of resurrection, that I could honestly tell my daughter that if cancer took me away that I could see her again. But I don't believe that, so every special moment or day still has this kind of painful poignancy. And it brings more guilt. I wanted to read the paper this morning, and Augie started hitting me, something he does when he wants attention. He got in trouble, then apologized (me Augie Sorry mommy) and then I continued to try to read the paper. Gabe told me I should play with him, that sometime soon he won't want to play with us anymore, that he'll be like Lenny and be in his room all the time.
I felt so guilty, even if that wasn't his intention, even though I love the fact that Lenny steals away into her room all the time. I loved doing that as a kid, creating my own little world all by myself. I don't particularly miss her, because I know she's there. I'm not a mom who is in my kids' faces all the time, doing crafts, bonding. I'm there, and I love them and cook for them and read to them and I'm trying to stay alive for them, but sometimes I wonder if the way I do things is the right way or if I'm dooming my kids to remember me standing at the kitchen sink, if they remember me at all, when they'd rather remember me rolling around on the floor with them.
Then I tell myself that my kids would rather not have to remember me, because either way, they would rather get to be normal kids with a normal mom who lives to be old. They'd rather think that I'm better.
That's what we all seem to need from this thing, to get better. I was really struck by this the other night when we watched Love and Other Drugs on netflix. When Anne Hathaway's character says, you need me to be better so that you can let yourself love me, I actually said out loud, huh, every person with cancer feels that way. Then I said, oh, I know that wasn't true for you, babe, but I know that a lot of people couldn't deal with me when I was in the middle of treatment. A lot of people were waiting for me to get better so they could talk to me again, just like they did when I was nine and I was in a wheelchair. What happens when you never get better, when your cancer treatment lasts for the rest of your life, you never get out of the wheelchair, your epliepsy is uncontrolled and devastating?
I'll tell you what happens. You lose a lot of people, even if you shouldn't. But you still deserve to be loved and you still feel the same. You are still yourself, but many people will treat you otherwise. Even a movie that was trying to make this point couldn't move past it. This young woman with Parkinson's was only symptomatic during the few minutes of the movie when the romantic relationship was in question. For the rest of the time, her lover can say he accepts her condition without suffering the consequences of what that means, since it doesn't seem to mean anything for her except that she has some artsy sense of ennui that leads her to sleep with all her doctors (wow, is that a completely repuslive thought to me. how would that come up in any kind of conversation?). There was one post-modern scene in the film when people who must have really had Parkinson's were talking and joking about it at a convention. I thought, here we go, that's how folks with Parkinson's really talk, really stand, gesture, etc., and they're going to go there in the film.
Nope. She had a mild case, she got the guy, they had great sex (I'm sorry but I felt they had zero chemistry which was a shame, given the great amount of eye candy involved. Gabe even said wow, Anne Hathaway is such a beautiful woman, why isn't she sexy? So maybe we were missing something in the film?), they lived happily ever after.
As I thought about this I felt guilty again. So far, that's been me. I'm the one with the relatively mild epilepsy, who was still able to do what she wanted with her life in spite of it. I never had brain damage, I am able to drive, I can take care of myself and my children. I'm the one who learned to walk again, who talked to the guy holding a gun at my head so I could get my keys out of my bag (so he wouldn't have my keys and my driver's license, thus gaining access to my house) and came away unscathed. I have this desire to say, and I'm the one who had cancer and lived a long time. How is that fair?
Then I need to pinch myself. I'm not that person, not yet. I'm not out of the woods, and yet I so desperately want to believe that it is all behind me. Is it true that I was just in menopause a few months ago, I thought as I bought maxipads at the store today because I don't keep extras anymore, as I'm half convinced each period is a sham. Is it really true that I coudln't have had that iced mocha a few months ago without spinning into a horrible series of hot flashes? Was I really bald? Did I really have three cancerous tumors? Did I really wean my son almsot a year ago in just a week, not because I was tired but because I had some damn breast cancer? What the hell is that?
There's guilt again, and I feel it as I write that about weaning Augie. For the last few days we've been trying to wean him off the bottle. Yes, my son is almost two and he drinks a bottle of warmed milk before his naps and at bedtime. Not at daycare, just here. I don't mind it an nap, but he needs to brush his teeth and not have milk on them all night, so we've been giving him a bottle of water instead. Last night he fought it like mad, but today he was ok. He will not drink milk out of a sippy cup--only a bottle or a normal cup, no top. So either it's the bottle or a total mess. Soon I'm sure he'll give up the bottle of water, and it makes me so ridiculously sad, and angry too. Why did we have that taken from us? I actually really liked nursing him, unlike the struggle I had with Lenny. He just looked at me tonight like he was saying, well, so that's over, huh? For a split second it reminded me of those hurt looks he gave me last year in the mornings when his dad fed him the bottle and I didn't even go in his room because I couldn't bear it. But then he smiled at me and offered me his pacifier (he had two of those in his hands, and I don't give a shit if he has them until he's four). He must have known I could use some comfort, even if I did my best to hide it.
So that's how it is over here. It's normal and it's fun, then it's sad and sentimental. It's scary, it's mundane. There's guilt and there's walking to the park. There's thinking about explaining the concept of death and resurrection to your child and there's me turning to Gabe in the middle of a movie and saying, do you think people with Parkinson's can take the pill? Because she must be on it, the way they just start going at it all the time and never use a condom.
Suspension of disbelief, he said.
And therein lies my problem. I've always had trouble with that. I want things to be like they are, to be real, to be true. For the last few months, I have had a new life, a resurrection of sorts. But that has only been possible because death is lurking around the corner, and it isn't particularly positive. It's somewhat daunting actually, and there's a lot of pressure, wondering what I'm supposed to do with this new life that's just like the old one, albeit more "felt." I feel my life more, but sometimes all that means is that I feel more shocked and terrified at the thought of it ending soon, later, at all. And I think that's ok. Cancer doesn't turn you into Sartre. Life still matters, the small things are still important.
I feel guilty about my relationship with my son and then I feel this weird pride when he points to the El tracks several blocks away and says "choo choo." We live near the metra, not the el, and the metra runs along the ground on the south side. He has seen the el when we drive on the highway, but there was no train on the track. He saw the rusty track in the distance, among a million other things that there are to look at in the middle of downtown Chicago. He knew there should be a train there, and I wondered how he could know that.
Gabe said, you know how he knows that, you've said it yourself on multiple occasions. Oh I know he's no dummy, I said. No Kate, that's not it. He's been here before, he knows what's going on.
I don't believe that, not really. But I have no other way to explain the things that he does, so I think, nah, but what if...what if?...
Happy Easter.
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