My Breasts and the World Around Them

"If you're not getting reconstruction, then you don't need a plastic surgeon," my surgeon said.

"Alright, but let me be clear," I said*, "deciding to 'stay flat' does not mean I don't care what my chest looks like. And if a plastic surgeon has something to offer in this regard, I would like to have them involved."

Ultimately, it doesn't seem like I'll need one. But I wanted to make sure my surgeon understood that by not wanting implants or reconstruction, I wasn't "giving up" on myself. I was giving up on the patriarchy. I loathe to think I'd deal with the pain of "expanders," and surgery to implant some saline filled sacks into my chest so I could look a certain way - for whom exactly?

If it were for me, if it were my "confidence," why would I need tits like that to feel good about myself?

I admit that my reaction to these ideas of reconstruction is such a visceral repulsion, that I feel compelled to examine my response.

I spent over 30 years of my life trying to meet other people's standards of success and beauty. I have a lot of anger around that lost time. I have a lot of hate towards the world that tried to bury everything about me that was perfect and precious, in the name of what they decided was so. Society, media, relatives. The shits they gave about me were completely self serving: Consumerism, appearances, having a scapegoat.

Society, media, relatives. I was able to serve them all well because I was pretty enough, compliant enough. I did my part in service of all those things, and the pain of it all was easy to ignore because I was just so good at it. The smallest steps in other directions were met with consequences that told me clearly to go back where I belong, and I regret that I was never strong enough to move forward anyway. I regret it with every part of me.

The idea of implants or reconstruction represents, for me, doubling down on a commitment to the lies of those things. And I have some fear, that if I do not comply, I'll be left to die, as useless to the powers I've served for so long.

Four years ago marked the beginning of the end of this time in my life, when I came out to myself about my sexuality, and as my last vestige of "normal" melted away, I realized that I can never win that game I was playing. I quit. And all this time, I've tried to learn about the person I am, if only I can peel away over 30 years of compulsive conformity, loneliness, and fear.

To build breasts onto my body for the sole purpose of appearances are based on values that are the antithesis to mine. I can say that now. Thank God I can say that now.

*I do actually talk to doctors that way. I recommend it.

Sensation, paralysis, mastectomies.

When my disabled son was born, and for many years afterwards, I would massage his legs and feet. I still do, sometimes.

He has no movement or sensation there. His sensation is spotty in his thighs, and decreases to nothing from his knees downward. But I massaged anyway, tenderly, with so much love and intention, as though telling his legs how much I love them, and, more than a little bit, hoping I could will some life into them.

But he never felt that. He couldn't feel it, and also, I was doing something he couldn't feel. I realize more recently that I was doing it for myself. All my tenderness and comfort was all about making myself feel better. There was not much giving going on there. I should have hugged him more, or massaged his back. But instead I focussed on my loss instead of his needs.

For three weeks now I've been living with the reality of an impending mastectomy. I knew there was no surgery that could make it look "right," but also, I've been thinking through ideas of body image, society's "normal, and my own relationship my body, gender, and society, for so many years now. If there was every a good time in my life to deal with such a drastic change in my body, it's now. I can do that.

When I thought about the impending loss, although I won't pretend I'm too body-positive and don't-give-a-shit what society thinks to have any insecurities about my appearance (98% about being naked around my partner), the majority of my grief over it is around my sensation.

I knew it would not be normal and there would be a major loss there. The doctor I spoke to yesterday confirmed, and was very clear about the different reactions some women have; the different ways they describe this loss. Like a gap in their torso.

So I think about hugging my children close to me and what that might be like soon. I think about how much I enjoy it now. And the feel of fabric and warmth. I think about this much more than how I'll look in clothes.

Bodies touching each other, skin to skin, is one of my favorite parts of sex-slash-cuddling. I've described this closeness as though one's soul pushes out through their pores to the other, and wraps around them. It's part of reaching out for this closeness that, actually, you can't have in this world, with physical bodies in the way. But using your body to get so close - that's what we have while we're here.

Will I know if she puts her hand on my heart? Will it comfort me if she does?

Cafe Therapy

Oh, hello here! Why, I believe it's been over 2 years! Am I even talking to anyone? Hello?  So.. I'm about to change this blog around irreparably, and I was flipping through my old drafts, and here's a little gem I never published. There's a surprise at the bottom.

--Start--

I can't afford therapy. Between #2's art classes, #1's play therapy, and #3's extra pair of leg braces, it's just not happening. Oh yes and the $20+ THOUSAND dollars we need to pay in tuition this year. Can't afford much.

But there's one thing I can afford.

I can afford to buy a cappucino and sit in a cafe for hours, listening to trendy music and looking like I'm doing something very important on my computer.

As a harried mother constantly on the verge of a nervous breakdown, I value the time I can spend in a place that is...

... clean...

... calm...

... where there are grown-ups...

Add something just a little sweet and adult-tasting, and that's it. I am relaxed.

Whenever friends and acquaintances of mine begin to speak about moving out of town, I can fantasize for a few minutes of endless space, grass, and a bigger house. But of course, I have to ask: Are there any kosher cafes in this out of town place? I don't know if I demote myself to cholov stamm and Starbucks...

So I take cafes very seriously.

--End--

And apparently I took living IN town pretty seriously because of them. But in the interim, I actually have moved out of town. And to be sure, I miss my cafes terribly. But since Odradeks closed, I guess life was just meant to change...

I would like to write more about where this blog is going, but it's so severe, I'll be putting it up in another post... Hopefully in a few minutes.

About Having a Child with a Handicap

First a tour. Just up above this line you have the post title and blog name. To the left is some white space. And to the right - oh look! You can now follow this blog by email!

Bad Cripple blog poster Dr. William Peace wrote the saddest, saddest post. And then he wrote another sad post, and I'll link it here. (Warning: His posts contain a small amount of explicit content and language. You don't have to read it. I'll quote some below.)

Initially, after reading it, my thoughts go to my 3 1/2 yo son with Spina Bifida. How do we give him what he needs to avoid this bitterness?

And for the record, Dr. Peace's bitterness is completely justified. And honestly, the entire oilam owes him an apology.

But practical front aside: As Jews, we know Who is Ultimately responsible for hardships and trials. We also know He loves us more than we can understand. But it's hard to have the presence of mind when faced with difficult situations.

Parking my car and getting my wheelchair assembled is as astounding as the Grand Canyon. I am regularly stared at. When I bike some people have stopped on a dime as I passed them on my hand cycle and yell at me to stop. In the distance I hear "I want to look at the bike". Some bikers have followed me for miles keeping a running commentary about how amazing I am. I now have a trainer and bike in my house. I do not want to be a stranger's super cripple. I am in reality an ordinary person. Yet I am barred from being ordinary.

Emphasis mine.

I remember when my son was first born. I remember reading a phrase from some article by or about a person going through another intense nisayon: "I had lost my badge of normalcy." Those who know me might argue that I was never normal, but I even lost my badge of "quirkiness." People placed me elsewhere.

I had been told, and am still told, that I'm an inspiration.

When my son was first born, and I was called an inspiration, my reaction was simply that I didn't want to be anyone's inspiration. I needed a normal life, where I could be inspired by other amazing people to see what a petty ingrate I was, and plug along trying to improve - and even succeeding to some small extent. THAT's me. But to be the one doing the inspiring? And how? By virtue of having this child? You would think I donated a kidney or fostered a delinquent, but my situation was thrust upon me, unwillingly. It's like being kidnapped, and dragged kicking and screaming onto a stage, take the black bag off my head, and walk away. The spotlight is on me. And there is a large crowd watching, waiting to see my performance.

But time passes. I've had some time to rehearse. I remember a Shavuos shiur by Rabbi Orlofsky. Something like:

In Judaism, there is no "commemorating" in our holidays. Rather, we relive the event every year. Not literally or practically in this plane of existence, but the energy and spiritual reality of the event comes around each year. And Shavuos is the day we choose to receive the Torah from Hashem. And every Shavuos, we're choosing the Torah again and again.

So one might ask, "Well, what if I decide that this year, I don't want it?"

And the answer would be, "Too bad."

As Rabbi Orlofsky explained*, it's yours. This is your mission, whether you like it or not. You can choose to ignore it, but the consequences of that decision will chase you down.

People expect me to be an inspiration because they are taking their cues from Gd. If He put me in an extraordinary circumstance, it must be because He expects me to be extraordinary. So why shouldn't His people have the same expectations? On a second look, it's really not so unfair.

I also have the choice to wallow in despair.

But whatever I do, it doesn't change the mission Hashem gave me: To raise this child b'simcha, b'ahava, and with tremendous Hakaras Hatov to HKBH. It is my most fervent wish that I can merit to see my son as an adult who is filled with love of life and Torah.

There's more to say about Dr. Peace's post which I'll write another day.

Wishing you all of Hashem's open brachas in perfect abundance,
Rivka Devora

*The Rabbi's explanation actually involved a Harry Potter reference which I am not cool enough to remember.

Moshiach is Coming

"Does he know," she said referring to my son walking past in his walker and leg braces, "that Moshiach's arrival is imminent and he can soon throw those things away? That it's not coming sometime soon, but now?" She points to the floor to emphasize now.

My kids and I, and my son's ComHab assitant, are at a birthday party for my friend's son who is turning 1 year old. The party is in Crown Heights, down a very long flight of stairs.

It's my nature, for some reason, to take everything very seriously. So immediately, my mind begins to form a response in the way of the effect of such a statement made to such a boy. And what it would mean when moshiach doesn't come, and the child continues to be dependent on assistive technology, tomorrow. And the day after that. And next week. And at his 4th birthday party. And 5th.

I could ask his play therapist what she thought about it. I think she might refer to such a statement to this child as "disastrous."

Thank Gd for 30+ years of life experience to teach me that replying in this way would not be appropriate. The fact of the matter is that this lady, in her late 50's perhaps, is very sweet, and very sincere. Where does she get this emuna from? Is it from a life of difficulty where she saw Hashem's hand so clearly guiding her and strengthening her?

Maybe it's from a life so difficult, that's all you got. Like a crazy woman in the corner of rehab, fragile and pale, swaying back and forth in front of a wall: "Moshiach is coming... Moshiach is coming... Moshiach is coming... Moshiach is coming..."

Anyway. Hope they're right.

Wishing you all of Hashem's open brachas in perfect abundance,
Rivka Devora

Bad cripple. Great blog.

I am starting to search online for information on pediatric wheelchairs for my son. My searches led me to this blog: Bad Cripple

Aside from loving the blog name, I find his cynism a little refreshing. It's hard being so positive all the time. I try to be thankful. I try to remember that we are not entitled to our own heart beats, let alone 5 x 60minutes/week of physical therapy covered by the BOE. And while our son is still a child, being disabled is kind of cute and endearing. And our son, B'h, he is absolutely charming. He is a piece of shamayim, to quote his PT, right here on earth for us. I could go on, but I'll stop here.

Hashem wants us to do hishtadlus, and Bad Cripple is a Good Help for that. He reminds me about the general outlook. And I have a story coming up that would suit his blog quite well...

Meanwhile, the blog is a good read for anyone who wants to gain a little sensitivity to people with disabilities. Here's a new favorite: Being Dissed at Wegmans

Wishing you all of Hashem's open brachas in perfect abundance,
Rivka Devora

Looks

As I was hanging up my pilly Old Navy maxi skirts, of which I have 2 of each color, black and grey (all pilly), I wondered... Why am I hanging them up? Why did I bother to wash them on gentle? They already look like crap.

But I don't like shopping. Not that I hate it, just that I value productivity, and the point of shopping is (just my opinion but) to adhere to the laws of tznius, and to not be seen as a Flatbush Frumpy (in my part of town).

The nice part about not wanting to be a frumpy nebach is that I can interpret it as just wanting to smoothly fit in; not wanting to be stared at, or drawn attention to, both of which would be un-tznius. And so, really, it's all about tznius.

Unfortunately, my kevana is stuck on the frumpy nebach part. Putting my kevana into the fact that my pursuit of this goal could really be a mitzva, is hard.

That's the religious part of it, but there's another part: Before I was frum, I would wake up, get dressed, and go out into the world among strangers. I'd spend my day among strangers, in the clothes I decided on that morning, and think: Do I like this look? How do I feel? How am I received?

The next day, I can change it, and go out among different strangers, a completely new person. I could reset myself every day.

There are no strangers here in Flatbush. If I dress a certain way in public, everyone is labeling me, and storing that information. It's a hard box to get out of. What are they thinking if I decide to be ambitious one day and dress differently? If I dress more yeshivish? More "Flatbush Fabulous?" More hippie-cool?

And what are they thinking if it didn't work out and I go back to Flatbush Frumpy?

I used to not care what people thought about this type of thing, and I had no reason to, because they didn't care. People here care. So now, I feel like I'm in the Flatbush Fishbowl.

So what's the right attitude?

It's my job to dress tznius. Hashem also wants me to feel good about myself, so I do my best to find a tznius outfit I feel confident in. I notice the people around me, but I can choose not be made uncomfortable. My service to Hashem is to love them, and dress as well as I can. Any wardrobe issues, be it pilly skirts, or a day here and there of poor choices, so long as I put in my effort, is from Hashem. I thank Hashem for the challenge. I ask Him for help. I ask for a refuah shleima for my son, and I do my best to move on, and to be happy and serve Him with joy all the while.

What if the only tznius outfit I'm comfortable in is, um, not tznius?
B'h, I don't personally have this problem, so I'm really not sure. Maybe a good MO rav would know.
Although now that I think about it, maybe by some people's standards, I DO have this problem...

What if, as a result of people's opinions on how I dress, my opportunities become limited...
What can I say, everything is from Hashem. If He wants an opportunity to come my way, it will. If not, not.

Wishing you all of Hashem's open brachas in perfect abundance,
Rivka Devora