Tag Archives: being

sitting present in the darkness

This past year and some has been a weird process. I have been angrier than I have ever been before. I have been meaner than I was ever before. I have been sadder and more confused. Those are only part of the whole experience…

I have also been lifted higher, I have had moments of intensity that I cannot compare to any prior experience, I have been deeply humbled by people who I never thought cared…

It was super intense…  It is intense.

I am in one of those places today, high off of my birthday (yesterday) greetings, feeling peaceful and loved… in a place where the dark tinge hasn’t invaded my space. I am reflective, and trying to pull myself together in this moment.

Navigating these crazy mix of emotions has been exhausting.  I am sure it has also been exhausting for those who are close to me and can see how much they torment me.

I would see a therapist, but geez.. the one time I tried it took a really bizarre accident to find the most perfect psychiatrist for me to talk to, and any after just were a joke in comparison.  I know this is temporary, and I don’t want to put myself on a course of medication (though I recognize its value,  and think they should be used… it is not for me… not at this time).  My previous experience with fighting off things like this was similar in that it came after a serious illness. What I learned then, that I believe applies now, is that I need to live this craziness and work through it and I am using the strategies I learned then to help, and they are.  The one caveat this time is that I, at a time, was rather dependent on others to take care of my basic needs… and most really let me down.  I think it is that as I prepared myself for surgery, I let go… I promised myself that I would let others take care of me. So I did, and frankly, I still ended up having to take care of myself. Please know that I am talking basic needs, like food… some of the people taking care of me couldn’t even do that to help. So, I suppose I am mad at them, and definitely mad at myself.  I was trained from an early age to take care of things, now this does not mean I keep a clean house, far from that… but I am the type that will carry all the groceries, even if I am shopping with others, mainly because they walk away from the car and leave them all there for someone else and I am like “hell if I am walking up and down my porch stairs more than once, I am taking all these fuckers (bags of groceries) in right now”.  Fuck, am I stubborn or what?

Anyway, lots of thinking about all this crap and how to get myself back in to a happy place is going on. I try not to let it get me down, but it is really in my face at times. I amble through my daily life, trying to make sense of it all, trying to make sense of a world that has changed for me. Repeating tiny mantras about how “lucky I am”, or how “this world has so much wonderful for me” flutter through my head as my body tries to grasp them and hold them close to my heart. I was a much happier person 18 months ago, when I embarked on this path, and I have learned that grief, this kind of grief (the one for loss of self, rather than loss of others) is pretty fucking intense. I have changed, I cuss more… a lot more. I didn’t use to, I saved them for occasions that seemed to benefit from a well placed expletive.

There is so much complexity to this. It involves being disappointed by members of my own family and in tun trying to figure out if I had unrealistic expectations for them… because if I didn’t have the unrealistic expectations, and they really did disappoint me, that kind of makes me kind of stupid.  So, there have been a lot of questions I have been asking myself, and I am not the type that is afraid of hard questions… so that has been easy. Learning how human I am has been a mix of easy and hard. Working through stupid things people thoughtlessly said to me and which, for some stupid reason, are ringing bells and demanding my attention has been strange. There is this strange mix of braggadocio and humility in my self reflections that is a little tough to manage.  I think though, that I am starting to tell myself that I like myself again, and that is a good thing.

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These gems have life in them: their colors speak… (day 33)

The Day 33 prompt is:

What is/will be the subject of your next book?

The story I am writing about centers around a young woman named Clara and how her life is filled with love… a gift imbued through some magical experience had during her parents conceiving her. It is a story about how love has so many faces and how it is so important for humans to experience it. The story looks at how love contrasts with so many different emotions (as personality types). It examines the duality of life, but with rose-colored glasses. It begins with a description of Clara and her family and how they fit in to her ancestry. It follows her as she navigates out of childhood and moves into maturity. It examines the people she loves and how they are part of the magic spell she was cast upon her conception. It is a story about the role of others in personal redemption stories. It is about love, all the different kinds of love.

Image used from this article.

I remember, as a child, sitting in my gated front yard in Quito, Ecuador, looking at the people passing by on the street in front of me. A mix of men in hats, women in indigenous clothing carrying a small child strapped to their back and leading a yellow dog on a rope used as a leash.  Considering the tremendous difference between the huge Spanish colonial home behind me and the various levels of poverty and status in front of me…

I knew the gate was to keep people out, in part because I was young and vulnerable and with a high potential to be kidnapped. I stared at the glass shards embedded on the top of the wall surrounding our property, and thinking that the sun glinting off the various colors of glass made them look like jewels.  This memory, combines with many others serve as background material for the story. I had a truly magical childhood. While it was not without some pain, it was still magical and I want to re-tell it in the style of literature that came from that part of the world.

These gems have life in them:  their colors speak, say what words fail of.
~George Eliot

My hat tip today goes to Laura Hile, because she had me at pirate!

I do not crave Squirrel Poop!

I crave PEANUT BUTTER!!!!!!!!!

For the past 5 weeks I have consumed at least 10 jars of peanut butter. At least 10 JARS! This is crazy.

It is like one of those insane cravings that can’t be sated. It has to be smooth – or as they say in peanut butter parlance – “creamy”.

Yes, I tried to curb the insatiable craving by buying a jar of the crunchy (or chunky) stuff. It merely slowed down the intake, but not enough to think it was effective. It was actually a catalyst for a dangerous turn in this craving period. I had to eat it with chocolate. Yummy combo yes, but not when you are a super dark dark chocolate lover and find that combination is heinous….so you run out and buy some crappy milk chocolate to make it palatable. And even if you return to the no sugar added creamy peanut butter your love, the taste for hints of milk chocolate remains.  So, I elevated the experience buy snagging some of  my son’s Lindt’s.

Only to find the creaminess of their center the absolutely perfect complement to the spoonfuls of peanut butter that I have been shoveling ion my mouth. It was heaven, though there is a lot more guilt from digging in to my son’s stash of favorite chocolates.

Creamy peanut butter, it is really awesome.

“Who uses crunchy peanut butter?” he asked the room. “You might as well eat squirrel shit.”
~ Michael Thomas Ford, The Road Home

I am not sure about the source of the craving, but the all-knowing Google gave me the impression that this is not an isolated thing, that there are many people out there with a hankerin’ for the thing I most currently consider a nectar of the gods.

There is a possibility that I am in desperate need of something that my body has been missing, much like the fierce beef carnivore I would become back in the days when I actually got my period. The interesting thing now, since I don’t get a bloody period, but do get a hormonal one is that I still crave beef, just not with as fierce a drive.

Ewww, gross.

Let us get back to peanut butter.  Creamy peanut butter!!!

It is insane, I am carrying around jars of peanut butter with me, I make runs to the grocery store when I polish a jar off. I have bought big jars, and normal jars. I eat it straight out of the jar.

My husband must think I am crazy, but even he has helped me give in to this madness by running to the store late at night to help keep me in stock.

It has to be plain or chocolate, no bread, no jelly… just peanut butter. and lately some chocolate is nice (but not required). Preferably off a spoon, but a knife or fork will do.

At least one site says that it helps fight stress. Maybe so. It makes sense, the past year has been stressful in a novel way. If peanut butter saves me through it, it is indeed the fruit of the gods… and gloriously explains my 30 pound weight gain.

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…

##

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.

##

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!

Day 1 – 40DOW – viewpoints on vaccines

This morning was a struggle. 

I am trying my damnedest to get this to happen:

If you can RSVP for a Phoenix event click here.

Learn more about the film by visiting hpvepidemic.com.

I struggle because I want it to be successful 

The team I am working with has been UNBELIEVABLY supportive… but it is so hard to get buy in from other folks.

I struggle with that.

But it may have been that I had an unscheduled visit to my oncologist today. 

Bleeding.

Something I am not supposed to be doing at this point.

So I went in and saw my doctors nurse practitioner. Who performed a biopsy. 

I have had biopsies before, in that area…  it hurt like a motherf*&%#r. 

Even though she told me that it was my job to assume it was due to scar tissue, she also told me it was her job to rule out recurrence. She reassured me that it looked like granulation (BTW – don’t Google it).

What makes this situation even crazier is that the woman who did my biopsy is also a woman who will be on the panel for the movie screening.

Following up that I am helping to host a conversation about a preventable cancer

and that one of the panelists will have seen my girly-bits, I just got word who a second panelist will be and…. guess what??????

She has seen my girly bits too.

She was there when my son was born, as in the room… standing right between my husband and my mother.


So, I am trying to find the beauty of all of this. So, “this” being a weird place in my life (waiting for biopsy results) the week before I am helping host an event. The event which happens to be about something that most likely got me into the biopsy situation in the first place.

Anyway, the big shift for me has been to try and be kinder, gentler, more gracious… and yet stay my own person.

Hard to do when you are in a lot of pain.

I lay there waiting for the biopsy, pretending to be under a fancy kitchen heat lamp

The biopsy was really painful, it still hurts as I type this some 12 hours later.

I still have so much to be grateful for, But it is kind of nerve wracking to be in my position, again… you know, waiting for results. Not the most fun place to be.

Anyway, after my ridiculously painful “procedure” I yelled out “fuck, that hurts” and immediately apologized and lay on the exam table, in tears, for a while. The nurse practitioner who took the biopsy was so very kind and seemed very distressed by my reaction.

I was pretty shocked by it too. It was, however, really painful. I have had biopsies of my girly bits before, without any numbing agent, and it was nothing like this.

At one point, during the second “grab” for tissue I screamed out “oh fuck that hurts”, and then immediately apologized. I am generally not one to curse much… I was embarrassed.

I lay on that exam table, tears streaming down my face, trying to get back to a normal breathing, staring at the bright light above me wishing there was something like a rainbow pooping unicorn to look at…

The nurse practitioner held my hand, asked me how I was feeling, helped me get some of my ibuprofen and drink it down. She seemed very concerned. All very kind considering that she had just learned she would be speaking at the HPV movie thing and that I was involved.

After my breathing got back to normal and the tears stopped falling down my face, she told me to lay there as long as I needed. She, and the other NP with her, quietly left the room. I lay on that exam table, and the tears came back.

It was a pity party I suppose. I lay there crying and trying to remember to be thankful that this was an experience in which I had had tremendous luck. No chemo. No radiation. a tumor the size of a grain of salt.

I lay there looking at the light above me. Trying to make it something more than just a light, making a distraction from the pain in my internal surgical site and the pain in my heart.

My heart did hurt, I had a vaccine preventable disease.

Let me say that again, I was diagnosed with a vaccine preventable disease.

One that would have prevented everything, a sub-total hysterectomy, worry, agony… and today’s darn biopsy.

It is a vaccine preventable disease.

Granted, I was born before this miracle vaccine was developed. But it is a vaccine preventable disease.

And as I ran through a list of people I do not particularly care for, not one of them and not one of their children were eligible for my wanting them to suffer what I had suffered through, I AM suffering through.

Vaccinate your children. In some cases yourself. Your boys. Your girls. This alternative is not fun. not fun at all. The HPV vaccine is good for kids aged 9 to adults aged 26.

It is a vaccine preventable disease.

.

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!

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:

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.