Tag Archives: dare

The 5-Week Author Blog Challenge 2015 – Day 8

Prompt 8:

Who is your favorite literary character? With which literary character do you most relate? Which literary character would you most like to invite for tea/coffee? What would you ask him/her? What do you think you could teach him/her?

My most favorite literary character is also my alter ego, at least she was in high school. I tend to think of her with a more motherly affection now, though the character is till very close to my heart. That is Modesty Blaise.

MD fan art.

I wanted to be as tough as she was, I wanted to be as tough and as beautiful as she was. I wanted to be as tough, and beautiful, and interesting as she was.  I suppose I related to her because of who she was and who I wanted to be.

I would love to have coffee with her, or even with her sidekick Willie. Though I would venture they would be more apt to drink tea.  I don’t know that there is a set conversation i would want to have with them, nor do I think I would have anything I could teach them.

Other characters that I have loved deeply might be any of the Greek gods as depicted in D’Aulaires’ Book of Greek Myths. It was (and remains) a favorite book. I loved the illustrations as a child and spent amazing amounts of time reading and re-reading this book.  I loved the characters in Geek Love, but am not sure if I want to meet them, I think I would be better off just observing them, they do both intrigue and scare me.

swirly

OK, so today my hat tip goes out to the Interpreter of Inspiration.  I loved that post, curse words and all. I think she nailed exactly what I love about complex characters. I have also added her suggestion of Tigana to my Amazon wish list!

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TMI

Navigating a cancer diagnosis that has a surgical intervention is pretty complicated. In the case of breast cancer  the mastectomy or lumpectomy scar is right there for you to look at, it is hard to hide from, even in a case where the patient has opted to get reconstruction.

Girly bits, the lower ones, cancer is a little different.
Both breast and cervical cancer are traditionally considered women’s cancer (though men can and do get breast cancer). Our breasts and vaginas are the most obvious parts of what makes us women (yes, yes, yes, aside from all that inside touchy-feely kind of stuff).
I have not had breast cancer, but I used to sit on a board for an organization that served women who had breast cancer, and as such I heard a ton of stories. Women’s sexuality, for many of us, are tied up in our boobs.
Are they small. Are they big. What kind of nipples. Do they sag. Do they perk.
People we, as women, love intimately, typically love them.
I can’t imagine the mental turmoil surrounding losing your breasts.
I know too well the psychological turmoil in losing your lower girly bits.
For starters, here is a pictorial cartoon like representation that I took from the ethers about what those girly bits look like. I would have used actual body parts, but really, it can be hard to tell from something like a medical school cadaver image.
It should not be a surprise to anyone that I owned these parts. These parts are also part of what made me a girl. Aside from boobs and all that other stuff. Gender identity… I believe that is the new buzzword.

So, below is a picture of me after the surgery. I had to use some fancy apps on my phone to remove those parts which I had removed. But this is all that is left inside me. Most of my vagina. And my ovaries. Everything else was taken out. My uterus – OUT. My cervix – OUT. My Fallopian Tubes – OUT. There were some other things that got taken out too; lymph nodes, tissue… but those aren’t girly bits.  Oh, and you may be wondering what is up with my ovaries. For now, since I plan on asking my oncologist about them at the next meeting, I just imagine that he blinged them up and hung them on my ribs  or something once he separated them from my uterus and Fallopian tubes. I imagine that they are dangling like a disco ball for my abdominal region (what seems to have gotten big enough to play host to an CRAZY internal organ dance party).

But this is my trying to make light of something that is far more serious. My scar from this surgery is on my abdomen. It has not really exemplified what exactly happened to me.

I had all those parts removed. My vagina was shortened.

For the past 5 months, I have been terrified to think about what my new body was like. I knew and celebrated it being cancer free, but it changed. it changed in ways that make it very obvious.

But these are things I cannot see. And because I can’t see what my new vagina was like, I had created horrible images. These were courtesy of words like scar tissue and granulation that were tossed my way in my post surgical exams.

Those are not pretty words, images of keloid and granulation in my mind as to what my new vagina looked like. I had images of puckers tough tissue reminiscent of the ears that a bullfighter cuts from a bull.  In my head, my new vagina was hideous. I was ashamed and horrified.

So, finally, after five months. I got up the courage to take a feel and see what it was like.

It wasn’t hideous to the touch, there were no areas of puckered keloid tissue with granulation that I could identify. The tissue was smooth, taut, moist. Just what it should be, though missing the nose tip of a cervix.

I cried with a sense of relief.

A RANT – Catching up, with myself

So, for starters — the biopsy was totally just scar tissue.

But that event led to some pretty radical discoveries.

One thing is that I deeply resent is the people that tried to write my cancer story for me.

There were people who tried to decide my treatment option.

There were people who told people false information about my diagnosis, and refused to tell the real one. “It was DES, that is my story and I am sticking to it”, they said. (for the record, it was not caused by DES).

Oh, who am I kidding it was one person!

The fact that this person is also a cancer survivor makes me all the more incredulous. And bitter. And angry.

The one place I don’t feel gentler and kinder is in those who try to take from me.

We don’t live in a world where we have to whisper the word cancer any more, where the sheets and mattresses are tossed because they are “contagious”…

It is my story.

I don’t like people who interrupt my story with thoughtless perversions of their own.

We seem to live in a land of poor listeners…

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I resent the anti-vaccine movement. My cancer is vaccine preventable. Men and women get cancer from a virus called HPV – we have a vaccine for that. Why on this earth would anyone choose to risk getting cancer????

Read this for a far more articulate version of why: http://www.voicesforvaccines.org/say-something/

I had a preemie, a medically fragile baby… to think how clueless I was when I took him out with me after he was born… it makes my heart hurt. I don’t feel much kindness towards my friends who support vaccines but pretend to be anti-vaxxers because they are afraid of conflict (or in one case because they thought it was ironic and funny) .I don’t feel much kindness to my friends putting seriously and DANGEROUSLY false information out there about the problems with vaccines.

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and lastly…

I lost god, or God, or G_D or however one wishes to spell it.

I am totally fine with this, I actually feel some relief in some ways.

It, ironically enough, happened on Easter Sunday.

I was reading some blogs, and came across a few that made claims that were completely incompatible with my thoughts on God… and as I pondered that incompatibility I asked myself about the roots of that… and came to the conclusion that I can’t buy what they said. That I think everything is far grander than they think and that they are so limited in what God means… And just like that, I left God where he belongs, in the hearts of people that need that.

I still strongly believe that religion (in any form) has some very important cultural fundamentals and is vital for many people who struggle to make sense of things… but that as I struggle to make sense of things, that ideas on God no longer require fitting in. I am happy. I would encourage people to find God… I just don’t. I don’t need re-birth in a Christian sense, I don’t need to be saved in a Christian sense, I don’t need those things at all to find my path in this world. I can make all of those transitions and shifts without God. I also don’t consider this to be a simple kind of faith.

To be fair, though… most of the things that caused me to go were about Jesus. Not God, that is if you consider them separate (in any form) and while I followed a Christian based spiritual path, I never felt that Christ was my “It” guy. I had believed that I understood God, but that all got called in to question. And I realized that the version of God that I had in my heart was based on the magnificence of things, most of those things being based on reason, some of those things based on how I made sense of the world. But, and here was the kicker, I really did not need God to keep that delight in magnificence. It was there even as I let go. I still deeply love this world. I am not about to become an atheist poster child. I don’t even like the word atheist. But I don’t feel like I fit the mold for agnostic any more either.

I am still navigating this path… but I am ok, I don’t see it as a path of reason, it is just my path.

Maybe, someday, I will change my mind again, though I feel less inclined to care. It just is.

I still believe in vaccines, though!

A year in my life…

A year ago, I had sent my son off to Europe and missed him terribly.

I think it was the Starbucks app of the week that was a picture a day app. I downloaded it, because;
1) it was free
2) I was thinking about documenting how much I missed my son

So, I took the selfie… and time flowed and I stuck to it and yesterday I got a notice that I had taken 365 photos.

One year, one insane year.

A son sent abroad at a very young age and being diagnosed with cancer. Not really sure which was hardest at the inception.

I missed my son terribly and was so happy when I reunited with him.

And hearing you have cancer sucks, sucks, sucks… and somehow it infiltrates everything.

But I missed my son and that was the hardest thing ever, and yes.. in a way, it was harder than being told one has cancer.

But the cancer things has its own craziness, craziness that makes everything outside the norm seem so much scarier.

So here is that one year of selfies, and as I sit here trying to figure out what all to tell my oncologist when I call him tomorrow, I think I look so much happier now than I did when I missed my son so much!

Lent – and COAK (aka Calculated Acts Of Kindness)

It feels like a new beginning and how wonderful that this feeling coincides with the first day of Lent.

So, I am following after Kelli, from over at AfricanKelli, with a commitment to Calculated Acts of Kindness… (COAK)

I will post updates on:

Flickr Pool

Instagram

Facebook

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

What a wonderful way to start the season…

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 Facebook, Twitter, 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?

The friction of being

I came across this quote today:

“In effect, the cost of being who you are is that you can’t possibly meet everyone’s expectations, and so, there will inevitably, be external conflict to deal with- the friction of being visible.” 

~Mark Nepo

The opposite, the friction of being invisible, is that you are unable to meet you own expectations and thus there is great internal conflict.

I don’t know that one way is better of the other, it is a balance of the two, the totality of the friction of being.

Last night I was part of a panel of speakers for a women’s membership organization that I belong to.  The group is struggling with member retention and one of the areas they are focusing on is creating a culture of acceptance.

Acceptance is an interesting word to use, though a good one.

Acceptance does not mean that I freely love and enjoy all that passes my path. It is more like a time to observe. Not everything will make me happy. And I will need to be allowed my opinion. And acceptance means that I have to work at not letting it bother me.

Oh would that that be easy. I can still list of things that are the actions of others had a direct affect on me and for which I am still not happy. I have accepted the situations. I am dealing with them as such, but acceptance also means navigating the complexities of the “friction of being”.

I am choosing, for example, not to speak to my aunt right now. It is for a variety of reasons, springing from her and her husbands choice to not have interaction with my brother, coupled with her saying that she will not acknowledge that my cancer diagnosis was the result of HPV and will instead tell everyone that it was because I am a DES daughter. To me, her choice speaks of being ashamed of my diagnosis, after all it has been called the whore cancer. Add to this the fact that she was insulted that I did not thank her enough in a blog post and cried to my mother who proceeded to lecture me via phone, email and text about how insensitive I had been.

I still speak to my mother, but the conversations are related solely to my son as she is his grandmother and I will not interfere with that relationship. I answer her when she brings up the fact that I am choosing not to speak to my aunt right now, but my mother calls me hateful.

Actually, it is about choosing gentleness.

I can’t be ashamed of my diagnosis and anyone that puts me there can’t be in my circle right now. I still cry when I think about the whole thing; the diagnosis, my surgery, the good, the bad, the gentle, the insensitive, the whole mess.

I can’t be around people who flutter about in their own narcissism.

I suppose, though, that it could be argued that I am in a bout of fluttering about in my own pool of narcissism… but in that respect who isn’t.

I see this more about choosing things that lift me up, rather than bring me down. I am still choosing gentleness in this who friction of being.

Blaine The Dane – QEPD

Just shy of one year ago, a very dear and special person passed away. his friendship was deeply (profoundly even) important to me, he was kind, and gracious, and patient with me. I was reminded of his passing, and the flood of sadness at knowing that would not hear his voice again, just made my heart feel heavy. again.

He was living in New Orleans when Katrina happened, he called me a couple of days after the storm hit from his cell, the one which I had tried repeatedly to reach him on. I answered, breathing into the phone with anticipation; “Blaine, please tell me you are Blaine and that you are OK” He answered; “Darlin’, I am OK. It is hell here, but I am alive.”. He told me how awful it was and asked me to call others that were important to him, people who I did not really know, but had met and knew how to get a hold of… There was such an honor in being that kind of person to him.

I wrote him a letter last year, shortly after I found out he had passed away from brain cancer. Here is an excerpt of that letter.

My dear Blaine,

I always told you that you helped me in ways that would be eternal. Now that your body has passed away, the truth of that hits home, and hits hard.

I was recently broken up with one of the most vile and worst of the boyfriends in my life… I was broken but managed to talk myself into going to Long Wong’s in Tempe to hear The Revenants play… alone. Not anything I normally did, and everything I was told I should never do.

You were sitting outside on the patio with mutual friends. You heard them ask me about the ex. They went inside to see what was going on. You stayed and talked to me and told me what I needed to know about being in a relationship with addicts and how to handle it now that I had broken up with him.

I recall thinking that you were trying to work me, and you probably were. The light from the streetlight reflected on your long, dark, thick hair. I was pretty broken that night, when I arrived. You were extremely kind and I decided to give you a chance. We spent quite some time together after that, hanging out at your casita talking about having ties to the rise of Phoenix; Denton, Texas; music; astrology… and even a little about your vile ex… and my vile ex. And in those moments, where we would sit and talk, a wonderful friendship began. That is, until you decided to move to New Orleans because you didn’t want to cut your hair. I’m not quite sure how you managed it, but before you left Arizona, you helped me regain a sense of worth that I had handed vile ex boyfriend on a silver platter. Merely in you appreciating me for who I was, was I able to regain the knowledge that I was a good person. Those early years between us seemed a diversion. We had sex , drank a lot of your cold brewed coffee and talked.

I always marveled that you were such a wonder… You were the first to present me with a clean sexual history on paper, I was struck by that… it seemed so gracious. You also once introduced me to your friends as your lover, you were the first man to do that. I was floored. I’m not sure why, but it was undeniably true. You had the smoothest skin 😉 I’d ever seen, I still marvel at that. Making love to you was straight raw sex… but it was transformative for me. You helped me get past some perceptions about my body and shifted the way I confronted men as well as myself and how I felt about sex. You allowed me to relax and have fun. You were a catalyst in returning me to me.

We stayed in touch by email when you moved away and when I moved out of the country. We would use ICQ to chat between Latin America and NOLA. You were the first man to send me a picture of themselves naked, and I think you were disappointed by how I was not charmed by that.There was the other video (not of you) that still shocks me, and has me deeply concerned about a horse. You seemed surprised that I even watched it.

I was able to swing a visit to New Orleans and stay with you for a few days on my way to a friend’s wedding. I was still living overseas and there was something that felt very grown up in going to visit you, even though I was in my late 20’s at that time. That trip changed me so much. It was there that I became aware that you called me darlin’. It was that trip when I felt like the sexiest and most desirable woman in all of New Orleans. You took me to dinner and fed me jambalaya, later you took me to see the Blind Boys of Alabama. I wore a slip, no bra and no panties. We walked around the French Quarter and you gave me a tour of the city at dusk and into the night. You introduced me to your friends as we walked along the street. I”Of course, darlin’ you’re beautiful.” I think that walking around town with you while I was wearing nothing but a black slip was one of the most wonderful moments in my life as a female. I felt beautiful in a way I had never felt before. You may have been the first male to tell me that and that I believed truly meant it.

We went back to your place and made love… and I laughed. You had to stop and tell me how weird it was for you and I told you that I was laughing, not at you, but just at sex as it was a funny thing to do and it felt good and most of all because I was happy. You looked at me and said that you could handle that, smiled, cupped your hand around my neck and kissed me.

You took me to a graveyard near your home and we talked about death and life as we wandered and sat on the mausoleums, that was so perfect. You told me that you had identified the time and date you’d die. You wouldn’t tell me though, you said that it shouldn’t matter and I realize that was right. You called me darlin’ that whole trip (and never stopped).

I never had “intentions” about my relationship with you. It just was. I never thought of you as a boyfriend or even as marriageable. We enjoyed each other.

I recall that in Phoenix, we spent a New Years together. We had dinner and you ordered soft shell crab. I seem to recall that we went to a party and got bored and went to just get naked and enjoy each other. You looked so handsome in your suit, and you were extra gentlemanly to me.

I’d gotten married and when I told you, you said that you’d miss having sex with me, but that I was forever your darlin’. I came to visit you again after that, and stayed with you but in separate beds this time. You showed me the shaker shop and your love of good wood. We were friends, and I knew that would never go away.

I was one of the first people you called after Katrina devastated New Orleans… to tell me you were ok. You’d call a every once in a while and I’d call you. You’d share your relationship horror stories and I’d ask about my sons astrological chart (it was not done by you, but it was done with software you’d written. So it felt right) or we would talk about how New Orleans was still trying to recover. Or we would talk about guns and how much you hated liberals.

Oh my dear Blaine, when you called to tell me about your tumor. I was devastated. Stage 4 is never ever good. I asked if they thought it had been the tumor that had caused the constant ear infections 15 years prior. You said you hadn’t thought of that. I think it was, but it is in my nature to find some form of survivor guilt about you. I don’t want you dead, but you went ahead and did it anyway. So you leave me here, all the richer for having had you in my life.

I miss knowing that hearing you call me darlin’ is a phone call away. It was always so genuine.

I really do miss you.

Love you forever,

Your Darlin’

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