Category Archives: search

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?

 

 

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? 

Remission

At my last appointment my doctor used this word.

It should be a joyous word, shouldn’t it.
Not a question.
It was a blow to hear it.
As I told a friend, I had somehow thought I was exempt from THAT status.  So, when he dictated his notes and used the term to describe me, I was totally taken aback.
It’s really hard to navigate this disease, especially when there is no chemo, no radiation. It’s like a free pass.
If I were sick from those, I think people would be much nicer about my mental state…
But I LOOK FINE…
So, I must FEEL FINE…
But feeling fine is a lot of work. More work than it’s ever been before.

Day 11 – 40 Days of Writing – ten years ago my cervix failed me too

I realized that I have been blogging for 10 years, starting around this same time of year. There are earlier posts but those were after the fact. The linked one was my first and the one before it was an email I sent to friends on that day (he day I retroactively published it).

The huge irony is that it was about my cervix as well, granted in that case I also gained a son… instead of in this case where it is about losing my uterus.

It is ironic, I suppose… to have started this blog because I was in a dark place. Bed rest, as romantic as it may sound, was amazingly lonely and dark.

And now, these ten years later (almost to the day) coming here and writing again from another dark place, that has a very different feel to it… a deeper kind of vulnerability, perhaps.


Jean Jacques Henner – Solitude



Day 5 – 40DOW – I don’t have Ebola

Restless nights provide for interesting lucid thinking. I’ll start from a doze-like-state with some thought usually a random one.

At this point, it’s 3:00 am and I am snuggled up in our Arizona pines under a heated blanket. I have arranged for a Skype call with my sister in England for later. But what woke me was the thought; “I don’t have Ebola”. Which isn’t that far off since we have a gentleman up here in a self imposed quarantine after his return from a mission trip to Liberia. News link
It’s also interesting that I’ve had to, on a couple of occasions, give friends permission to worry for me. When something scary happens to someone you care about it can be hard. But it’s tough to understand since I’ve always felt the right to deal with these things as my body dictated. I’m also surprised in the ever slight shift in my self. I’d consider myself to be nurturing in many ways, I tend to love people fiercely when something about them speaks to my soul, and as I manage the phone conversations and emails, I feel decidedly more nurturing to them. It’s very subtle, but it’s something I’ve noticed. I wonder if it’s the result of the emotional exhaustion or just an internal shift and I wonder how temporary it might be… this urge to tell the people I love that are family and friends to give in to how their body is telling them to react. Maybe it’s because I see love in their reactions and I’m honored and humbled by its reciprocity.
Maybe it’s because it’s now 3:30 am and I need to get more sleep.

Here is a picture of a bull with a B on his butt.

Day 4 – 40DOW

Emotionally drained.

Moved through the last phone calls, began the personal emails and then prepared for and began to draft the mass email to friends whom I respect. 
At this point I became exhausted and took a several hour nap.
 
People, so far, are being gracious and supportive. Except for the one friend who heard the news and (not unexpectedly) proceeded to talk about themselves for 40 minutes. Thankfully, it caused me to laugh in some form of delight.
A last minute trip north, just to get out and get a break. 
Everyone on their respective devices, random conversation about physics, religion, books.
Two more personal contacts left… 
I feel better today.

Day 3 – 40DOW

My prima gave me this.

I made it through the first night with the “C” word.

I slept better than I thought, but I think I woke up more often, though my fitbit says otherwise.

There is a part of me that wishes I did not have to tell anyone. And I mean anyone. That I could forge through alone, because, frankly, it would be easier for me mentally… relationships take an awful amount of energy and I suppose I want to save it (energy) for what is important,

But, I can also admit that I just won’t be able to go through this alone. I need my team. I have the core. I am glad for that.

I hate very much, though, that I find that I break down in tears, and tend to do that when I am rummaging through closets and cupboards. My friend says that she did her crying when she was in the shower.

I hate that I keep telling my son that I keep getting dust in my eye. Because I just start crying randomly… even when thinking about red-lights and changing lanes.

But you want to know what scares me the most? Telling my friends. My close friends. The people whom I would want to know if something difficult/similar befell them. I am struggling on how to tell them. Family is easy, I know they will stick by me. Extended family is easy, I know they will manage in their own way. Strangers (like my son’s teachers or parents at Squink’s activities) are super easy, mainly because I frankly don’t give a fuck what they do.

But those who fall in between nothing and genetic filial obligation… they scare me. I have started the process. I have called most of the people that I truly value, the ones I hope I don’t lose. There are a few left, but they have birthdays and other events going on, and since I don’t really know what is going on with me (in terms of what is going to happen ) and won’t until I see the oncologist, it can wait.

I wrote a friend who is on this same track right now and asked what to say, what to do, did anything work better…? And she confirmed my fear (which I knew but I was hoping that my awkward introversion was at play) that there is no right way.

She also touched upon how there is this period of not knowing, and that you don’t want to fling the diagnosis out, but then secrecy happens and people get nervous. So I think I am going to ask if I am free to emulate in a grand unveiling, if you will indulge the flourish, of what is going on with me.

I am starting to feel like I am fitting pieces together, the pieces of what I need and want in order to move through this. I know I want to proceed with rose tinted optimism. I consider myself to have my feet firmly planted in the ground and am aware of all sides of things, I want to get through this without wallowing in dark and negativity that is generated by other people. Why, do I want this? Because I know I am going to go through all these different stages and I won’t allow negative Ned’s and Nelly’s” to bring me down… I want you to lift me up, to sing with me, to smile, and say “Blair, this will all end up OK”.

So, I suppose not only am I afraid of the friends I will lose because they are burdened by a fear too great to be with me through this, but I am afraid of the friends I will chose to lose because they are too negative or pessimistic people to be around. I am still trying to come to terms with this.

I still breathe.

Blaine the Dane QEPD



Just shy over one year ago, a very dear and special person passed away. his friendship was deeply 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 I 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 from his cell 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 asked me to call others that were important to him, people that that I did not really know, but had met and knew how to get a hold of… There was such an honor in being that 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.
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 about what I needed to know about being in a relationship with an addict and how to handle it. I recall thinking that you were trying to work me, and you probably were.  The light from the streetlight reflected on your long 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; your years in college in Denton, Texas; music; astrology… and even a little about Charlotte… and my vile ex boyfriend.  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 drank a lot of your cold brewed coffee and talked.        I always marveled that you were such a wonder… 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 then when I moved out of the country. We would use chat between Quito, Ecuador and NOLA. And you taught me enough to help me get a gig in Ecuador so I could maintain digital contact with my loved ones in other parts of the world. During those times, I was able to swing a visit to New Orleans and stay with you for a few days. That trip changed me so much. It was there that I became aware that you called me darlin’, you had always called me that… but it sounded different to me. 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 simple black slip as we walked around the French Quarter and you gave me a tour of the city at night. You introduced me to your friends as we walked along the street. I had asked you as we left your place that evening if I should wear the slip, it felt racy and daring and you said “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. 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 boy friend, much less a boy friend, or even as marriageable. We enjoyed each other.
I recall that once, 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 coffee 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 checked our chart and told me we would be very good for each other, but that I was forever your darlin’. I came to visit you again after that and you showed me another part of New Orleans and told all the inside jokes and stories… who wants a nutria po’ boy?You introduced me to your girlfriend, 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 awhile and I’d call you. You’d share your relationship horror stories and we could talk about wonderful magical things… 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 to talk to you). We would talk about how New Orleans was still trying to recover, and how you felt that the US ignored Louisiana and its recovery, that we could have done more. We would talk about guns and how much you hated commie liberals. It was never contentious, it was always delightful.
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 that 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.

Love,

Blair

Originally written 8/6/13

Finding the magic, courage and faith in the pursuit of openness… maybe.

In the lifelong pursuit of being a member of the collective world, some things help facilitate things between all of us on this planet. because left to our unhampered instincts, I think we would be quite feral.

Communication is pretty much at the forefront of that, wouldn’t you say?

By that, I suppose I mean relationships.

Of course, animals develop relationships, bonds, and/or what have you… but there is a something among humans that relies on all forms of communication.

While I would say this is true of everyone, I think it is especially for people like me, who have chosen to embrace more than one region and thus have to navigate different cultures, environments, and things of that nature,

I came across this article, which got me to thinking about its list of 5 things that are better than being right (which I saw as a catchy article title that is ultimately about things that make you a better part of a community).

My first reaction was to Openness, something I am not all that good at. 

I tend to keep things closely guarded and close. I don’t reveal things until I have to or if I must.  There are many conversations with family in which I will hear them say “I didn’t know that, what didn’t you tell me?”

I don’t know if I have always been this way, but I think I am less open now than I was in… say, my teens. But, I think a lot of teens are that way.

So, I was struck by the notion of openness.

And as always I refer to consensus of definition and look to a dictionary (in this case dictionary.com). The two relevant parts of the definition are here:

  • ready to entertain new ideas; not biased or prejudiced: an open mind
  • unreserved or candid
I think I have a better grasp on the first one, I will listen, though I do tend to put things I am told to some rigor. I think this drives some people nuts, and if they waffle and refuse to accept consensus of definition, I tend to close off because who can argue with someone that sets up circular non testable arguments. 

So problem number one – I lose faith.



Faith is a state of openness or trust. ~ Alan Watts  


I do not talk about politics and religion with people. Oh, I will skim the surface so there is an impression of what I actually think and believe but, most have no idea… and we have problem number two.

I refuse the magic.

There’s just some magic in truth and honesty and openness. ~ Frank Ocean


So, I tend toward duty, and consider myself courageous in many ways. I don’t forgo new opportunities out of something like fear, but I do tend to default to duty.


So, here, in this instance, I lack courage.

“It takes a lot of courage to show your dreams to someone else.”  ~ Erma Bombeck


The good news is that these are all things I can work on… if I want to be more open, that is… not sure what that would look like for me? I like things protected and nestled in the sacred spaces of my soul.