I haven't used the space to write about my mother. I think because, on some level, her big-brotheresque stories about being able to constantly monitor me still linger in the back of my mind and I think she'll find it. I don't think I've got any readers who don't know me, and if you know me, you probably know that she and I have a horrible relationship. You probably also know that we haven't actually spoken to each other in over a hear. I use that term, "speaking," fairly liberally, because since I told her that I wouldn't talk to her until she stopped screaming at me (for not appropriately assuaging her fears that I might die while I was dealing with my diagnosis and subsequent surgery and adjuvant therapy planning), she hasn't actually spoken words to me, but has screamed via text message about how she's dying (not true) and how I am a terrible person for abandoning her.
Sometimes I think she's right. Most of the time I appreciate the quiet weeks in between the texts.
She is not well. I know that. But I couldn't keep letting that be my primary concern in life once I ran into something so large that it took all of my focus and strength. I needed to take care of myself before I could take care of her.
A week ago she broke her ankle.
I picked her up from the hospital and took her home and have been stopping by every day to walk her dogs.
It's awful.
At first she was terse, resentful of needing my help, I'm sure. She's moved on to pretending that nothing is wrong, ignoring me or playing dumb or tossing out trump cards when I indicate that I, too, know what it's like to be incapacitated by surgery. To feel frustrated and gloomy and scared. To be in pain that seems like it might never end. To be dependent.
She wasn't there for me in those days. Indeed, two days after getting home from two surgeries and a week in the hospital, she picked a fight with me that led to the ensuing year and half of (relative) silence.
So she pretends that those days never existed, or that if they did, I am just melodramatic, exaggerating for pity, which lets her be the bigger victim.
And I keep going over there. Keep biting my tongue. Keep not screaming at her for accusing me of shaving my head after finishing chemo to garner more sympathy. And not confronting her about how she lied and told me she had lung cancer, or about how she tried to make me think that Jason was cheating on me.
And I spend a little part of each day feeling like I might explode. And I don't know what to do.
I keep thinking that there ought to be a point when shit stops piling up. I can't be the case that all of my life will be this perpetual onslaught of disasters, right? But it doesn't ever seem to stop and I'm just so fucking tired.
I suppose in these dark moments, it is easy to overlook the bright ones that come in between, and there certainly are bright spots.
Friday, December 20, 2013
Friday, December 6, 2013
sweet relief
This thing I've been waiting for for over a year finally happened. It happened and I didn't even notice, but I suppose that's exactly how monumental events of this variety ought to happen.
I went the entire day--from the time I got up and get dressed, through my work day of moving around and crouching and huddling with students over their writing, of putting on taking off my jacket, until I got home and had made dinner--without thinking about my breasts. At no point did I have to try to discretely adjust my prosthesis, pull my scarf lower, my sweater tighter, or my collar higher to hide the awkward, abrupt protrusion that housed the hard, bulbous tissue expander. When I used the bathroom I didn't bother looking at my chest to see if the prosthesis was lopsided or if my bra was fitted weirdly over the expander (where I lack sensation). No stretch was interrupted with the genuine fear that I'd disordered my cumbersome, temporary breasts. The expander didn't push into my bicep, nudging uncomfortably to remind me of its presence.
I just got up and went to work and did regular people things, and thought about regular people things, without being distracted by feeling like a very irregular person. I haven't done that in a very long time.
I went the entire day--from the time I got up and get dressed, through my work day of moving around and crouching and huddling with students over their writing, of putting on taking off my jacket, until I got home and had made dinner--without thinking about my breasts. At no point did I have to try to discretely adjust my prosthesis, pull my scarf lower, my sweater tighter, or my collar higher to hide the awkward, abrupt protrusion that housed the hard, bulbous tissue expander. When I used the bathroom I didn't bother looking at my chest to see if the prosthesis was lopsided or if my bra was fitted weirdly over the expander (where I lack sensation). No stretch was interrupted with the genuine fear that I'd disordered my cumbersome, temporary breasts. The expander didn't push into my bicep, nudging uncomfortably to remind me of its presence.
I just got up and went to work and did regular people things, and thought about regular people things, without being distracted by feeling like a very irregular person. I haven't done that in a very long time.
Wednesday, November 27, 2013
surgery
Yesterday I had a surgery. The awkward, hard tissue expander that had been in place for months was removed in replaced with a much more breast-like implant.
The tissue expander was an odd, plastic pouch inserted under the muscle at my mastectomy site, slowly inflated by shots into the hard port. It crinkled and made a hollow sound with a strange rippling reverberation against my ribs when I bumped it . As it grew, it was stretched to beyond the size of my natural breast, expanding in an unnatural, somewhat cylindrical protrusion on my chest. It stuck out a bit past my rib cage so that every time I loved my arm, I brushed against it. It was difficult to dress, in its last expansion phase necessitating that I wear my prosthetic breast over top of my natural breast to compensate for the extreme size difference.
Now it is gone, and in its wake is a body that will soon feel much more normal, much less like a construction site, easier to dress, comfortable.
This is an important part of my new normal.
The tissue expander was an odd, plastic pouch inserted under the muscle at my mastectomy site, slowly inflated by shots into the hard port. It crinkled and made a hollow sound with a strange rippling reverberation against my ribs when I bumped it . As it grew, it was stretched to beyond the size of my natural breast, expanding in an unnatural, somewhat cylindrical protrusion on my chest. It stuck out a bit past my rib cage so that every time I loved my arm, I brushed against it. It was difficult to dress, in its last expansion phase necessitating that I wear my prosthetic breast over top of my natural breast to compensate for the extreme size difference.
Now it is gone, and in its wake is a body that will soon feel much more normal, much less like a construction site, easier to dress, comfortable.
This is an important part of my new normal.
Friday, November 15, 2013
staying, from this end
I've had a lot of people remind me, as though left to my own devices I'd forget, that I'm lucky to have Jason. I know it, and I say it a lot, too. He's good support. He makes me laugh. He makes me feel smart and important. But that's not what they mean, and sometimes it's not what I mean either.
What we all collectively mean, at least sometimes, when we say this is that I'm lucky that he stayed.
I don't know that he even knows the extent of it, but doctors and nurses asked regularly how he was coping and how his coping was affecting me. They were always relieved to hear that I wasn't afraid he'd leave, which is so heartbreaking. Even the women who fitted me for my prosthesis kept reminding me that my husband was going to be so happy. They were wrong about that. He wasn't the one who cared.
It does not say good things about what we expect from men that so many people approach his having stayed with such gratitude and surprise. It insults Jason. It indicates that abandonment is a common experience for a lot of women, so say the nurses, doctors, and prosthesis fitters, most common for women with breast cancer.
On another level, it does terrible things to me. Because I already fell apart about what a burden it was. Because on some level I do not believe that I'm worth the trouble. Because there were times when I wished he would leave me so that he could have the sort of life I wanted him to have. The one he wanted. The one we planned. Because I sat sobbing more times than I can count, cursing the fact that the insurance came through his job, because if it didn't I could have just left, given that he showed no signs of being willing to pick a different life for himself. Because if we all think it's remarkable that he stuck by me, then don't we all think, just a little, that he would have preferred not to? Because if we think that, then aren't we all agreeing that I'm really not worth the trouble?
Because I already feel so fucking lucky and indebted that I'm struggling to consider myself his equal.
So I'm glad that my family is completely head over heels for him. And I'm glad that the people who ask have a positive story to file alongside their collection of bad ones: The Good Man Who Stayed. And I'm glad that on some level I know that he was never going anywhere. What I don't always know is why it was worth staying. But I don't think I can handle another reminder of how lucky I am. But I could take a few that this--that staying--was exactly what we all thought would happen. That it is worthwhile. Because that's the thing I still struggle to believe.
What we all collectively mean, at least sometimes, when we say this is that I'm lucky that he stayed.
I don't know that he even knows the extent of it, but doctors and nurses asked regularly how he was coping and how his coping was affecting me. They were always relieved to hear that I wasn't afraid he'd leave, which is so heartbreaking. Even the women who fitted me for my prosthesis kept reminding me that my husband was going to be so happy. They were wrong about that. He wasn't the one who cared.
It does not say good things about what we expect from men that so many people approach his having stayed with such gratitude and surprise. It insults Jason. It indicates that abandonment is a common experience for a lot of women, so say the nurses, doctors, and prosthesis fitters, most common for women with breast cancer.
On another level, it does terrible things to me. Because I already fell apart about what a burden it was. Because on some level I do not believe that I'm worth the trouble. Because there were times when I wished he would leave me so that he could have the sort of life I wanted him to have. The one he wanted. The one we planned. Because I sat sobbing more times than I can count, cursing the fact that the insurance came through his job, because if it didn't I could have just left, given that he showed no signs of being willing to pick a different life for himself. Because if we all think it's remarkable that he stuck by me, then don't we all think, just a little, that he would have preferred not to? Because if we think that, then aren't we all agreeing that I'm really not worth the trouble?
Because I already feel so fucking lucky and indebted that I'm struggling to consider myself his equal.
So I'm glad that my family is completely head over heels for him. And I'm glad that the people who ask have a positive story to file alongside their collection of bad ones: The Good Man Who Stayed. And I'm glad that on some level I know that he was never going anywhere. What I don't always know is why it was worth staying. But I don't think I can handle another reminder of how lucky I am. But I could take a few that this--that staying--was exactly what we all thought would happen. That it is worthwhile. Because that's the thing I still struggle to believe.
Thursday, November 7, 2013
reminders
I knew when I accepted a job at a parochial school that there would
be many challenges; as a non-religious person, just this new proximity
to people and their faith was foreign territory.
The first time I sat through mass, blood boiling over the hypocrisy of people who would claim to love and forgo judgement praying to their god that others be denied the right to marry, I knew that this promised to be tough in ways I hadn't anticipated.
And then I found myself sitting opposite a slight, plain-faced seventeen-year-old girl and wishing her infertile. I didn't keep wishing it, but for a minute I sent mental daggers and my own meaningless prayer into the universe that experience might teach her what I know that she does not.
She was explaining to me that when she becomes a doctor, she intends to be an activist of sorts, one that does her utmost to halt the twin scourges of abortion and in vitro fertilization. This was how I learned that the Catholic church preaches against the use of in vitro fertilization.
But you have no idea, you are just a child.
I wanted to explain to her that until she has sat on the crumpling paper of an examination table listening to an oncologist tell her that disease makes pregnancy risky and treatment may make it impossible, she cannot possibly write off medial procedures--let alone seek to make them unavailable--for people in circumstances she cannot possibly understand. There is just so very much she does not know.
She wanted me to help her with a college entrance essay, and I did, though my blood seethed thinking of the ways this girl would judge me if she knew anything at all about my life. I bit my tongue carefully, talked about writing conventions.
I work in a place where judgement comes easily, slipping off the tongues of coworkers without a second thought. It is difficult to get through a day without feeling casually judged or picking up little reminders that I am not playing by the right set of rules dropped carelessly by so many of my coworkers.
But generally, my classroom is a little haven of tough questions and good books, of patience and love, a place where value judgements are addressed firmly, with efficiency and sincerity. I suppose that's why it felt like such an affront when this girl attacked something so intensely personal and dear to me.
I don't let them do that to each other; it hadn't occurred to me that I might, however inadvertently, be the target.
The first time I sat through mass, blood boiling over the hypocrisy of people who would claim to love and forgo judgement praying to their god that others be denied the right to marry, I knew that this promised to be tough in ways I hadn't anticipated.
And then I found myself sitting opposite a slight, plain-faced seventeen-year-old girl and wishing her infertile. I didn't keep wishing it, but for a minute I sent mental daggers and my own meaningless prayer into the universe that experience might teach her what I know that she does not.
She was explaining to me that when she becomes a doctor, she intends to be an activist of sorts, one that does her utmost to halt the twin scourges of abortion and in vitro fertilization. This was how I learned that the Catholic church preaches against the use of in vitro fertilization.
But you have no idea, you are just a child.
I wanted to explain to her that until she has sat on the crumpling paper of an examination table listening to an oncologist tell her that disease makes pregnancy risky and treatment may make it impossible, she cannot possibly write off medial procedures--let alone seek to make them unavailable--for people in circumstances she cannot possibly understand. There is just so very much she does not know.
She wanted me to help her with a college entrance essay, and I did, though my blood seethed thinking of the ways this girl would judge me if she knew anything at all about my life. I bit my tongue carefully, talked about writing conventions.
I work in a place where judgement comes easily, slipping off the tongues of coworkers without a second thought. It is difficult to get through a day without feeling casually judged or picking up little reminders that I am not playing by the right set of rules dropped carelessly by so many of my coworkers.
But generally, my classroom is a little haven of tough questions and good books, of patience and love, a place where value judgements are addressed firmly, with efficiency and sincerity. I suppose that's why it felt like such an affront when this girl attacked something so intensely personal and dear to me.
I don't let them do that to each other; it hadn't occurred to me that I might, however inadvertently, be the target.
Wednesday, September 18, 2013
memory
When things keep happening, as things are wont to do, it gets easy to fall in line with a routine that then makes it easy to sink into feeling like life has always been this way. Like there was never cancer to contend with. Like I don't still fear for my life. Like it all transpired in a life that belongs to someone else.
It didn't, though. It happened right here in this living room, this house, this town. This body. And you were there for it, you remember.
I just have such trouble fitting the whole experience into my sense of my own life. Square peg, round hole. And so it is that I generally set about my days like any other person, only sometimes I want to stop and scream, DID YOU KNOW I HAD CANCER?! BECAUSE I DID AND IT WAS THE SCARIEST THING THAT HAS EVER HAPPENED TO ME AND SOMETIMES I'M STILL VERY, VERY SCARED.
But usually I'm not. Usually, I feel just like anyone else. Until these memories slam into me, tiny flashes of my own face in the mirror as I fasten a scarf around my baldness. My own finger nails, sore and brittle, peeling away from the tips of my fingers. The darkness that pervaded days when I lay sick and inactive. An image of my own feet, pacing in circles while I wait for a doctor or insurance agent on the phone.
I'm still looking for the places where all of these pegs fit. And trying hard to convince myself that I'm really making the space they need, instead of just wishing I could forget them all.
Which is really the contradictory kicker, because on one hand I want so badly to pretend it never happened, and on the other I am so scared that already there are things I've forgotten.
It didn't, though. It happened right here in this living room, this house, this town. This body. And you were there for it, you remember.
I just have such trouble fitting the whole experience into my sense of my own life. Square peg, round hole. And so it is that I generally set about my days like any other person, only sometimes I want to stop and scream, DID YOU KNOW I HAD CANCER?! BECAUSE I DID AND IT WAS THE SCARIEST THING THAT HAS EVER HAPPENED TO ME AND SOMETIMES I'M STILL VERY, VERY SCARED.
But usually I'm not. Usually, I feel just like anyone else. Until these memories slam into me, tiny flashes of my own face in the mirror as I fasten a scarf around my baldness. My own finger nails, sore and brittle, peeling away from the tips of my fingers. The darkness that pervaded days when I lay sick and inactive. An image of my own feet, pacing in circles while I wait for a doctor or insurance agent on the phone.
I'm still looking for the places where all of these pegs fit. And trying hard to convince myself that I'm really making the space they need, instead of just wishing I could forget them all.
Which is really the contradictory kicker, because on one hand I want so badly to pretend it never happened, and on the other I am so scared that already there are things I've forgotten.
Friday, September 6, 2013
back at it
Hello my few abandoned readers. A lot has happened since I last made an entry here. I have a full-time teaching job. Oddly, this job is at a tiny parochial high school and two weeks in I am certain that I stick out like a horribly liberal sore thumb that just cannot be fitted to the conservative confines of this school. I don't think I'll get fired, but it looms as a more-real possibility than it has at any other job I've ever worked.
The job has its rewards. And its serious trials.
I am nearing the end of the reconstructive surgery process. My chest is now home to a strange contraption that stretches my muscle and skin, preparing them to eventually house the implant that will take the place of my long-gone cancerous breast.
I got my first post-chemo haircut last week. Just a trim, really, but it was satisfying to need that trim, and to put myself in the books for another cut now that the presence of hair on my head is a certainty.
Generally, things are good.
Still, reminders pop up that life keeps being hard in myriad ways.
Someone that you do not know whom I love very much tried to end his life a few weeks ago. He did not succeed, but survives with brain damage that is likely to leave him permanently dependent.
I talked to his mother tonight. We talked about bravery and about saying sentences you never thought you'd have to say. We talked about postponing the saying of said sentences because maybe, just maybe, we could hold out long enough and eventually they wouldn't be true.
But they are.
Her son has brain damage.
And she is brave. She is brave because she didn't cave in under the immeasurable weight of this disaster. Because she finds positivity to propel her through each day. But then--as she said, and as I said when people told me I was brave--what other option do we have? The irony of asking this question in light of this situation does not escape us. Still, it doesn't feel like bravery to keep going.
But I want to tell her that she is brave and strong and full of love and that these are admirable and important qualities. I want her to know that about herself.
And I want for her to have some reprieve from the people around her being in perpetually painful situations, some of their own making and others that are just chance. I want it to matter that she has tried to make their lives good. To change the course of events trickling back to and heaping themselves upon her.
It seems like there are people whose lives are not plagued by heartache and disaster. I hear about them, and I think I know a few. But maybe everyone's life is this hard and I am just unaware. I guess I don't believe in whatever metric might be used to gauge one against the other anyway.
This has been a year of many great losses, some good and some bad. Moving on keeps happening, regardless of how actively I participate. Maybe coming back here is a way to be an agent in the process.
The job has its rewards. And its serious trials.
I am nearing the end of the reconstructive surgery process. My chest is now home to a strange contraption that stretches my muscle and skin, preparing them to eventually house the implant that will take the place of my long-gone cancerous breast.
I got my first post-chemo haircut last week. Just a trim, really, but it was satisfying to need that trim, and to put myself in the books for another cut now that the presence of hair on my head is a certainty.
Generally, things are good.
Still, reminders pop up that life keeps being hard in myriad ways.
Someone that you do not know whom I love very much tried to end his life a few weeks ago. He did not succeed, but survives with brain damage that is likely to leave him permanently dependent.
I talked to his mother tonight. We talked about bravery and about saying sentences you never thought you'd have to say. We talked about postponing the saying of said sentences because maybe, just maybe, we could hold out long enough and eventually they wouldn't be true.
But they are.
Her son has brain damage.
And she is brave. She is brave because she didn't cave in under the immeasurable weight of this disaster. Because she finds positivity to propel her through each day. But then--as she said, and as I said when people told me I was brave--what other option do we have? The irony of asking this question in light of this situation does not escape us. Still, it doesn't feel like bravery to keep going.
But I want to tell her that she is brave and strong and full of love and that these are admirable and important qualities. I want her to know that about herself.
And I want for her to have some reprieve from the people around her being in perpetually painful situations, some of their own making and others that are just chance. I want it to matter that she has tried to make their lives good. To change the course of events trickling back to and heaping themselves upon her.
It seems like there are people whose lives are not plagued by heartache and disaster. I hear about them, and I think I know a few. But maybe everyone's life is this hard and I am just unaware. I guess I don't believe in whatever metric might be used to gauge one against the other anyway.
This has been a year of many great losses, some good and some bad. Moving on keeps happening, regardless of how actively I participate. Maybe coming back here is a way to be an agent in the process.
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