Category Archives: blair

The fossils of dead superlatives

I am the best at beating cancer.
Though in some respects, there was not much to beat.
In the end, we caught the cancer so early it was only the size of a grain of salt.
Yes, I talked about that before.
There are many strange things that happen when that words gets tossed into your life.
Trying to make sense of it may be the hardest.
In my case, it is managing the whole thing of having CERVICAL FUCKING CANCER.
It is, after all, considered to be a sexually transmitted infection.
And then there is managing that stigma.
I am finding my path as an advocate for the HPV vaccine. And am meeting with many people about how to help spread the word about the vaccine. I will state that I would not wish what happened to me on my worst enemy, and I had it easy.
Anyway, the stigma thing.
Some people that I tried talking about this with dismissed my concerns as my being more upset about it than the situation merited. In my fragile state I listened to that too much. Several months out from hearing this.. I am calling bullshit.
As I talk more with others, it is very clear the stigma is there.
After all, it forces us to have a conversation about S-E-X.
Because, that is understood to be the main way that you get it.
At a dinner to talk about HPV recently, a dear friend revealed that she had cervical cancer. And I watched her talk about her experience, and the others at the table leap at the chance to blame it on her husband at the time, as he was older, more experienced. I was pretty horrified by this, one could tell the others at the table liked her. Most likely they did not want to have any unpleasant ideas about her and her choices in behavior. We were meeting to discuss how best to spread information about the importance of the HPV vaccination among a particular religious group. As I heard them accuse the man, the hair on my back flared a bit. I reacted this way because it was judgement…  this happened and lets blame the older ex-husband because that is easy to do (though there is no way of knowing if it was the correct thing to do).
My tendency is to assume that everyone is having sex.
What that translates into can vary;
  • waiting until marriage
  • waiting until in a committed relationship
  • Sex on the first date
  • Sex with strangers
  • Sex with multiples
  • and on, and on, and on…
We have chosen, as a culture, to decide that one (of these) is better than the other.
We tend to judge men and women who choose to move outside the boundaries we set. That is, those of long term, spiritually certified, monogamous, committed sexual relationships.
And while this may present a cultural ideal, it really is not the case. One just has to look at the research coming out of the Kinsey Institute to be witness to this.
It is unfortunate that the assumed cultural demographic for women with HPV and cervical cancer tends to be among what is often referred to as the loose woman. 
Working in the early 80’s in some health promotion programs (breast and cervical prevention models) it was often a topic of discussion that cervical cancer was either transmitted by 
a) loose women or 
b) the husbands who had sex with loose women who would then  give this disease to their ever so chaste wives.

The truth is, is it really any of our business to worry about past choices? Past experiences?
We can all assume that the women who’ve had a diagnosis of cervical cancer have in fact had sex. It follows that in some way they have been exposed to the virus either through her own experiences or those of her partner.

The possibilities range from 
a) being raped (which is much more common than is reported, regardless of how you feel about it being deserved or not, and that is a whole different conversation) to 
b) choosing to have sex with a partner who is infected.
The only thing for certain is that there has to be at least a third person. This is in regards to the sex lives of a couple for HPV to happen (I don’t mean a three-some per se, though that is not excluded). The couple can be gay or straight.
Divorce rates indicate we participate in a form of serial monogamy. We can follow that with the idea that people who remarry have been exposed… which helps accounts for the idea that 80% of our American populace has the HPV virus.
But there is that stigma, it hides out there as this article recounts and is poked fun at by this Onion piece.
Dear me, I seem to be ranting…
Announcing I had cervical cancer allows people to make  assumptions about my sexual behavior. These assumptions create a need in me to discuss my health and sexual history to allow people to form a correct opinion of me.

Hell, even my husband was lamenting that he hoped  that he was not the cause for my disease,

In the end, my cancer was something that my body was unable to fight and the cells decided to mutate…  in most cases, this is something that bodies able to fight on their own.

A vaccine would have helped.
Oh, and by the way the incidence of oral cancers is on the rise and in men and these are associated with HPV too… how is that for a fun conversation. Lets talk about sex baby!

~sigh~
The funny thing is that I titled this post just because I read this article and liked the phrase enough to want to use it.  I did not intend to write a diatribe about my dislike of judgey people in terms of sexual behavior, but it happened… I suppose it is something I am still processing. one does not hear the word whore cancer and move past it easily.
Anyway, I love words, I love concepts… concepts like the consensus of definition, etymology, and epistemology (to name but just a few).

I have had several friends comment on the cautiousness in which I choose my words.  However,  when I am excited  I tend to fall back on strange metaphors, similes,  and synonyms that are tied up in my multi-cultural background and present what to some as gibberish. My  friends are able to figure it out or at least pretend to. 

I do love words, I like to listen to them, make sense of them, argue and chat using them… and I was charmed by this idea that remnants of my ancestors word choices are alive and well in my current vernacular.

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.

Invincible summers and calculated acts of kindness

“My dear,
In the midst of hate, I found there was, within me, an invincible love.
In the midst of tears, I found there was, within me, an invincible smile.
In the midst of chaos, I found there was, within me, an invincible calm.
I realized, through it all, that…
In the midst of winter, I found there was, within me, an invincible summer.
And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.

~ Albert Camus


It was late on December 20th, 2014 and I was still recovering from my surgery.   I read an email from my friend Gail in which she asked if the Junior League of Phoenix (JLP) would be interested in hosting a movie screening. Gail works at The Arizona Partnership for Immunization.


It was this movie screening:





I watched the trailer.

I called her to talk on the phone.

I pretty much told her that I didn’t know but I would find a way.  We talked about how I could manage this in my capacity as the member training committee chair and we came up with a plan. The next morning I sent out some emails to my Team Leader in the Junior League and my co-chair. Both were supportive.  Gail and I discussed venues and what options we had. We decided that my cousin, who is Lead pastor at Scottsdale First Church of the Nazarene, would be a good person to approach. So an email went to him. I received immediate replies and all were supportive. 

Here I am 2 months later. The JLP team lead I serve under, has allowed for this to become a bigger deal within the JLP.  More partnerships have developed and are included below.

Our goal is to provide one large movie screening with a panel that is targeting about 200 viewers. 

If you are local – please save the date:

Date:
Thursday, April 9th 2015

Location:
Scottsdale First Church of the Nazarene
2340 N Hayden Rd, Scottsdale, AZ 85257

Time:
 5:30 – 9:00 pm / Movie starts at approx 6:30

Tentative Agenda:
Sign in opens with a meet and greet: 5:30
Movie and topic is introduced and screened 6:30 
(movie is 80 minutes long)
Panel discussion at end of film
closing meet and greet


Community Partners:


I am back – with some Calculated Acts Of Kindness (COAK)

Yes, I decided to  come back here. I figured out how to un-subcribe people and did so…

I did that because this chronicles my life for the last 10 years.. and a lot has happened.

But those ten yea

thank you deviantart

rs all had my Squink in them. And even when I did not mention him, it happened around him.

But it also feels like a new beginning and how wonderful that it coincides with the first day of Lent.

So, I am following after Kelli at AfricanKelli with a commitment to Calculated Acts of Kindness…

I will post updates on:

Flickr Pool

Instagram

Facebook

and of course HERE (and on my other site)!!!!

What a wonderful way to start

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

For the children’s sake

Today I went to a luncheon that was started by a family that lost their son/brother to the ravages of addiction.

As I listened to the mother and sisters make impassioned pleas for support, I thought about how I would feel if I lost my son… not just to addiction, but to anything. Considering that I was close enough to that when he was a new born, I felt the mothers anguish. Then as I thought about how the young man was only in his mid twenties, I wondered how that must feel if it happened now or ten years from now, or even twenty years from now… painful is what I could answer.

Following that, I began to consider what my parents must have felt when I called to give them my news.

I started to feel a little sick to my stomach. Just in anguish.

I thought about my mothers gasp when I called her, and my fathers silence when I called him.  I noticed them, but only slightly… I was so wrapped up in my own extremely feeble attempts to try and manage the news.

To call them and share the news that “I have cancer” was hard. And to now be able to put myself on their imaginary end of the phone line was pretty horrifying…

What would I do if Squink called me with such news… not a question… the mere thought brings me stomach pain, a heavy heart, my breath stuck in my throat.

Our children are not supposed to die, they are not supposed to get seriously ill, to suffer.

Life is pretty ridiculous, and I say that because in spite of everything,  it all results in death, and we humans become so attached to each other, that the death part becomes un-natural to us in a way.

And I am not trying to be-little it, I am more trying to wrap my head around it.

People we love get sick (be it cancer, addiction, heart disease, depression, leprosy…) and they die… and we have to deal with the mortality of the ones we love… and the pressure of things when it is your children who are going through the process, well it must be intense and I don’t think it ever gets any easier.

When we were asked if we wanted Squink to be given last rights, that was a tough moment. We understood that he was not a healthy baby, that he could die…. THAT was intense. Schatzy and I went home and prayed, we felt helpless and when that happens you turn those feelings over, they become outside of self.

So that is all I can say, getting that kind of news must be devastating, as devastating as it is to get and be aware of the news about yourself, but somehow I just know that no matter what his age, I would take the news from him far harder than I think I might if the news were about myself… and neither would be easy.

poetry of deliberate awkwardness

One of the things with the notion of love is that there is a form of reciprocity that is involved  -  and yes, this is a generality… I can already think of instances where love is not expected to be reciprocated.


I love heart shaped rocks

I love road runners

I love Ecuador

I can say that I am pretty darn sure none of those love me back, (though I have an internal argument that countries/cities/regions can love someone but that is not really relevant to today’s thoughts) but that is not the kind of love of relationships.

I love my son, I am sure he loves me back.

I love my family, I am sure they love me back.

I love my friends, I am sure they love me back.

However…

Lyric Poetry, painted by Henry Oliver Walker (Thomas Jefferson Building, Washington D.C.).

Many of us do not take the time to notice and acknowledge how beautiful we are as humans.~ unknown

So, here is where I can say that in general I am really hard on myself. I don’t know that I am a beautiful human… I would like to think I am, but I can’t verify that I am with any certainty (you could ask my mom, and she would say yes, but she is my mom and of course she has to believe that…). 

If we have beautiful on one end of a spectrum I really can’t say that I think I would be on that end. If we have a  complete spectrum of beauty I can’t say that I would be on an end or even in the middle.. since there is something in the way we approach beauty that runs from good to bad that in some sense one part is better than another.

It is pretty sick, isn’t it. 

I mean, I look at my family, all my family and I am just wowed by how beautiful they are. I just can’t manage to apply to to myself.

I saw this Ted talk  and it struck a chord, though I think he may too easily dismiss duty in terms of love… but, I do think he has something in his ideas about loving the deliberate awkwardness of being human.

I am most definitely on a scale that measures that.


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.


Revisiting 7 and then 8 – and perhaps a dash on 9 – Find the Beautiful

Revisiting 7

I suppose my last post was a bit premature, though it was true. It is amazing how something gentle can shift everything, even if it is only temporary.

After my post, I went to a meeting for an organization I belong to. I expected to get lots of hugs and inquiries about my health and my status. I was looking forward to thanking people in person for their kindness, but felt shy about the possible attention.

The hugs were nice, the kind words and gestures were appreciated. I was glad to have gone and it was not as much of a burden to my shy side as I thought it might be,

But at the end, as I was walking away.  One of the friends who was there often for me asked me how I was and I replied with my usual. I am good, lots to be thankful for, one day at a time. She grabbed my arm and said lets sit and tell me what you mean by this one day at a time thing? 

I was stunned, she had latched on the the subtle nuance of such an expression and knew that my words were far cheerier than I felt. 

So we sat down, and I tried to explain that navigating the whole thing is complex. Yes, I fully see that there is so much that is good but that there is still the tough that needs to be dealt with. Being told you have cancer is more complex that I had thought, especially given the provisions that no chemo or radiation is needed, like those somehow would allow (key word here is allow)  someone to feel like shit. Please don’t think I am trying to diminish chemo or radiation and that people who have to go through that are somehow exception in some regard… because they actually are exception. What I feel like I am missing is permission to grieve this process and that my grieving is allowed to be more than just sad.  After I feebly tried to communicate these ideas to her, I just looked at the hands in my lap and said, I want to be allowed my pity party, I just don’t know how.

She touched my arm and said you are allowed a pity party and I want to be invited, lets go get some wine together soon.

It was so beautiful being allowed to feel this way instead of being held to strict gratitude. My heart filled with something, I would hope it was grace. 

I am not sure she knew what I was talking about or understood what I was trying to say, but she asked and then listened… holy moly… what a gift. She asked, she allowed me to tell her something closer to the truth about how I am feeling, In a world dependent on daily platitudes (“How are you?” – “I am OK”) it was mind altering to pass that realm and move in to more of the brutal truth.

It is part of the dynamic between celebrating that I don’t need chemo or radiation or that my tumor was so freakishly small AND the whole truth in that it was fucking cancer and it robbed me of some things that I held dear. I am grieving.




I don’t think I am headed to deterioration. I know I will be fine, but this is a part of what has happened and is happening to me. I own it. 

“Give sorrow words; the grief that does not speak knits up the o-er wrought heart and bids it break.”  ~ William Shakespeare

Then 8

After the sincere gesture of my dear friend, I felt more lighthearted yesterday. It was a busy day, work with extra duties, rush to help Squink finish his homework, a school meeting for an exchange program, and cub scouts.

I was too busy to notice much more than the heaviness of my surgery site.

A dash of 9

We all woke up early, and in good moods. I even served Squink some oatmeal and let him eat it in bed. On my way to the kitchen, I noticed how amazingly pretty my orchid plant was. 

It was beautiful. 


Squink was beautiful. 



My family was beautiful. And somehow everything else seemed less important.