Category Archives: silence

the sky is empty

“I talk to God but the sky is empty.”
~ Sylvia Plath

Ge’ez, Sylvia Plath is sure a downer!

When I was little, I thought my grandparents lived in heaven, not because they were dead, but because they lived in Arizona (a stretch to see how I got here, I can imagine, but bear with me)….

I came to visit them with this kind of sky:

From this kind of sky:

So, when we went to visit (usually in early summer) our plane went up above the clouds, but never came back down through them… so, they must have lived in heaven, right? Please, also note that this was also around the time I was very saddened that Zeus and the pantheon of gods was not “real” and that my mother found me once, kneeling in the front yard praying to the moon-god. I was a wildly spiritual child.

Considering my family did not practice any real form of faith as I was growing up, they were Protestant in Roman Catholic countries after all – and any Protestants that lived where we were tended to be evangelical missionaries and not the most fun to be around – add in that we were considered to be “converted” and there were all those heathen Roman Catholics and indigenous cultures that needed to be saved. 

Many people tell you to lean in to your faith in trying times like this. It is amazing how much you seek something out, something that requires faith. But looking for something that is comfortable, that does not mean I must have a rebirth in any fashion, that means I don’t have to believe fossils were put on earth by satan to lure us to his evil ends,  something other than the spiritual connection to the cancer I got is because I have mommy issues, something other than I am not godly and got cancer because I am being punished… 

fuck – fuck – fuck – fuck

FUCK

How do you find faith in the midst of such fucking insanity.

Notice that is not a question, though it probably should be.

Anyway.

I learned that I had a sizable chunk of muscle removed with my last surgery. Granted, it was not the breast surgery removal of days of yore when women begged for a radical (nay, they wanted uber radical) mastectomy – the kind that took out muscle and bone (think ribs and clavicles). I’m missing 2 inches of chest wall muscle… and I’m still in disbelief… faith.

The way humans think is sometimes shocking to me. BUT, and it is a YUUUUUGE “but”, I get it. While my head understands that if treated correctly a lumpectomy has the same results as a mastectomy and you heal faster – but WTF does treating something correctly mean? My tumor was muscle adjacent, so does that mean that one of those a$$hole cancer monsters escaped and is it hiding somewhere? Somewhere that chemo and radiation can’t find?  Faith.

This is where finding faith again is crucial – but it is so freaking different this go around, faith that is.

If you are prone to that which is beyond the physical and don’t judge, I can share how I am re-learning how to lean in to faith again.  The thing is, I will most likely appear a heretic to you.

The one thing I know, is that I don’t think faith is about re-birth (that concept is what caused me to abandon faith before)… if it is for you, that is awesome – but I don’t buy it one effin’ iota.

I, beautifully enough, am finding this process of rediscovering faith kinda cool. and a bit painful.

It is especially nice since there is a disquiet in this process, of being a person diagnosed with cancer. It was present the first time and it is present again this time.  The subtleties of it that I experienced the first time is magnified, but both of my cancer experiences, so far, are incredibly similar… at least internally.

Because my first round was stage 1 and caught super early and only required surgery it was subtle. I felt like a fraud of a cancer patient because phht, it just needed surgery. People (most of them), aside from the time during the surgery put me at the bottom or low-end of a cancer continuum (that was practically equated with being cancer free).

In this round, where I am currently listed as stage 2B (and probably only because they did not take out more nodes and we will see if that changes after the next battery of test results come in), it is still sufficiently low on that continuum that I still feel like a fraud (though only less so because, after all, it looks like I am getting chemo and radiation this time) and the news about the cancer itself has just gotten progressively worse. Many of those same folks from my first experience are still like “well, you aren’t dying”.

I am adding silently  in my head; “that I know of” because I am still waiting for more tests and results of tests.

No, I am not dying (well, at least I don’t think so, but as I said… I will have a more definitive answer after I see the results of the next test). Trust me I celebrate that!  I am not healthy, I have a chronic disease that gives me (according to my radiation oncologist) an 81% 5 year survival rate (though this varies depending on the sites with such data). Yes, 81% is super awesome, but before this all went down I was with most others and had the general average population of a smidgen over 98% . A 17% drop in my life expectancy is still a crappy thing to have as a part of my life.

Trying to balance a good attitude with crippling doubts is a strange place to be.

I struggle. The struggle is real. Not because I have a Christian need for an after-life – but because I want to be more than just a life form – I want something divine to be a part of this experience, I want to lean in to something when I am so riddled and consumed with anxiety. A set of rituals that I can be a part of, a community where I feel like I belong. IN my head I often say to myself, I just want to be loved through this.

I read about Sherman Alexie today, something that I struggled with, but which spoke to the spiritual little girl in me that the unseen world is there for those that listen.  (the story is here).

I have found great comfort in so many people in my life, women and men – willing to be a part of this process with me.  I hate to lean on them, how do you answer the unanswerable to someone like me desperately seeking?

 

 

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It was smaller than a mustard seed (or “How ya doin’?”)

“How are you doing?”

I get asked this a lot. I mean a lot more than usual, a lot, a lot. I imagine it is the result of their knowing I was diagnosed with cancer, and with a subsequent surgery.
It is an even more complex question to answer now.
The nuances of recovery from my surgery are interesting.
On one level, I am so incredibly lucky that it is a true cause of celebration. I wonder how rare it is to get a cancer when it is under 1 mm.
In one study that I read about cervical cancer, the data regarding the tumor sizes (not direct to the study, but the data was presented) said the mean size was 2cm and the median was 1.8 cm (of the tumors in the study).
I was at 0.8 MILLIMETERS
a grain of salt.
       a grain of salt, on a pinhead.

Smaller than a mustard seed.
The average size (from that one study) is like a marble, or a quarter, or a stamp.
A stamp, rather enlarged
I am so insanely lucky. However, my cells had made the crossover from being atypical to being cancer. The cells in question had moved from being In Situ to being nefarious (micro-invasive was the word) things…. So I said get it out.
It was aggressive in terms of the treatment I chose. I didn’t, however, want to revisit this conversation of “You have cancer” again. At least not for this.
So, the surgery for a grain of salt included my  the removal of entire uterus, through a long abdominal incision. It included the removal of my Fallopian tubes, sixteen lymph nodes, and some tissue that surrounded my uterus.
For something the size of a grain of salt.
The surgery was traumatic. My body does not feel normal, though it feels like it should feel normal. No visible parts are missing, but there is the scar that travels along my lower abdomen.
My girly bits and stomach are numb. My scar itches. There is a heaviness where I image the lymph nodes were. Cold causes a strange ache. I get exhausted easily and try to balance everything.  There is something I will refer to as exudate. My stitches have yet to dissolve. I don’t feel good in the sense that I feel limber and mobile. My abdomen feels  tight and yet wobbly.
Source: http://en.wikipedia.org/wiki/Daniel_Johnston
This post originally appeared elsewhere.

Peek-A-Boo – I can’t seeeeeeeeee you…..

Oh my, how many times did I play that game as a new mother…. There were countless delights in the delight and giggles of my newborn son. I loved watching my son take his turn,  cover his eyes, and then swiftly moving his hands away. Staring at me, wide eyed, with the expression of “Mom, I was here the whole time”, laughing as I pretended that I could not see him.
The idea is to learn object permanence.
My brother, when he was young, used to close his eyes when he wanted to be alone (no matter how many people were in the room with him). He was completely convinced (I believe) that if he could not see us, that we were no where near him.
People were and are always present to each other. This is true, even if you adopt some sort of frantic philosophy in which you would argue that everything is not real. That my brother was, in fact, alone and/or there was no one in front of my son when he had his eyes covered.
I thought about these times after I read this article  the other day.
I find humans to be fascinating, we are social beings. There must be some kind of thinking that has an application to technology and how we tend to act towards each other. I mean, why do we act so terribly when we can’t see the face of the other… trolls, for example, thrive on this, I would argue that they depend on it.
I’ve been told that gossip serves a crucial social role for us humans. Gossip moderates our social behaviour… and I think that it applies to this in a certain context. So, imagine if you will, how easy it would be to scold someone you know via text or email if you did not have to see them. One would put their scorn into a few words and be as clear, concise and I might argue brutal… after all we want to make sure the point gets across.
This message puts the other end of the social interaction on the defensive. It is more likely than not, that a series of texts or emails get exchanged with a defensive end and an aggressive end. For delicate social relationships, this is probably not the best way to go about communicating.
This is so hard for people like me who hate talking on the phone. I prefer a text, or an email. I tend to not even want to talk to people. I am an introvert.
This is a modern day reliance that tends to be abused. When I sit on a board or committee, I tend to default to this. I have noticed that feelings get hurt so much more quickly over text or email. I know that I have been on the hurt end. I know I have also been on the giving end…. though not usually in giving of a complaint, but in pursuing a conversation.
So, I ponder the reliance I myself have on technology to communicate my feelings. I am trying to move away from it. Of course, I have this (these, actually) blog(s), they are a public written communication. And my blog is also subject to vitriol and complaint.
Text, email, and even blogs are devoid of any kind of social interaction. When we speak we can at the very least know that the subtle intonations are being heard (even if misheard). When we write, sarcasm doesn’t usually translate. When we speak, there is a possibility we can react to body language. When we text, we don’t.
So much is inferred through sight and hearing. I can see if the person I am speaking to has outward signs of having a bad day. I can hear if someone is making a joke. And though people miss these cues often when in person or over the phone, we are less likely to miss them than if we text.
In the days of “The FaceBook”, Twitter, email, text, instant message… we have lost the physical interface.
If you consider things like FacebookTwitter, or even blogs you can see  how there is a modicum of backlash. Will we learn how to do this better? 
When will learn to be more gentle with one another? 

I hate this blog

Not really…

I actually love this place. I am just not happy here right now.

I have written in it for over 10 years.

It chronicled my pregnancy and the birth of Squink. It watched the early years of his growth and my trying to figure out how to move it out of being a mommy blog into something more.

There was the year I tried to love poetry, still don’t.

There was a feeble attempt at food blogging.

At the forefront, though, has always been something that I would call my story.

The funny thing is that it took my cancer diagnoses to change that.

At one point this blog became about other people. 

It took a triple lecture from my mother in text, email and phone call form to change the way I look at this place.

The lecture was about how I had offended my aunt because I hadn’t thanked her enough in these pages.

I was told that it had been explained and that she understood, but three messages/lectures about one incident about how I had failed here are hard for me to recover from, at least at this point,  Especially since I know they still read this.

I try to write something but each time I ask myself who is going to get offended this time.  I can’t do it, I have 68 drafts sitting in my folder waiting to be published or worked on. This place was not about making other people happy, it was supposed to be a place to write. Making other people happy is not what I wanted this place to be about. I can’t do it that way. Since I can’t seem to get past that and the sense that somehow what I write is or can be rude or offensive or even (at best) insensitive… 

Oh, I was just trying to work out my gratitude for how many people helped me… nothing more… The thing is…, I am not mad… I feel like I am just not good enough to do this anymore.

This situation (above) happened right on the tail of a post in which I chose not to include my husband, mainly to protect him and to make it about my son and I (yes, that was selfish)… he was hurt and having to manage his hurt feelings was hard, but I deserved it. In the case of my husband, I was wrong… I should have asked if I could include him and didn’t… . but in the other I was not.

This was supposed to be my journal, my thoughts, my stories, my ideas… and now they are terrified of hurting someone else’s feelings, having to deal with more emotional upheaval, being at the end to more lectures holding my behavior to a certain standard, more hurt feelings (my own included). 

But what can I do?

I hated the year I only wrote about poems, it was so anonymous and sterile. but it seems that is the only thing I can try to do anymore. I love my family too much to risk it.

I met some really wonderful people through this blog. 

I miss that part of this… 

However, in the interest that no one gets hurt by reading this blog, I am keeping this proverbial mouth (blog) shut. At least for now.


“You should try not to talk so much, friend. You’ll sound far less stupid that way.  ~ Breeze”
~ Brandon Sanderson, Mistborn: The Final Empire

The Language of Silence

I am almost always the first to wake up in the house.

Usually, I manage to open my eyes before the first of the two alarms I have.
I listen to my house. I listen to the street outside my window. I listen to the ping of my automatic coffee maker. I listen to my husband sleep beside me, and I listen to see if my son is waking up in the other room.
On rainy days, I listen to the drops of rain against the window.
I look for the signs of morning. Rays of sunshine streaming through the windows, the light on the carpet in the hall next to our room.
I sit up and reach to grab my robe from the foot of the bed and wrap it around me. I swing my legs to step onto our cold floor. I putter towards the kitchen, grab a mug and set it on the counter. I putter to the fridge and open it to get the half and half. I open the carton, as I swing around back to the mug and pour enough in to just cover the bottom of the mug. I put the creamer back and swing back to my mug, pick it up and carry it to the coffee maker, which has already started and is seconds away from giving me the refuge I seek. Once my mug is full, I cradle it between my hands, feeling the warmth. I hold it up to my face and inhale deeply. I love the smell of coffee and cream. I think about the farmers who raised my beans, who milked my cows and give them gratitude.
I putter back to my bed, stopping along the way to peek in on my son, and smile at how gentle his ten year old face looks in the early morning light, the light dusting of freckles on his nose and cheeks. I watch his chest rise and fall for a bit and continue my way back to bed. I set my mug on my bedside table and push my pillows up against my headboard and slip back under the covers sitting up. Once I am comfortable, I pick up my mug and take another breath to inhale its aroma. I take a sip.
I enjoy the silence, the brief respite from life in that moment.
I pick up my phone and check emails, both work and personal. I check the news and open up Facebook and Instagram to see what the previous day brought…. I wait until I hear the alarm in my sons room go off, when I will get up and help him with breakfast.

And as I do these the speed of life picks up and moves along at an ever increasing pace… and won’t slow down until the next morning when I wake up.

Originally published at https://medium.com/@blair_necessity/the-language-of-silence-531433a88d93 on January 12, 2015.