Today I am supposed to write about what is making me mad.
Aside from nostalgia about the magazine, nothing much comes to mind. I am sure i get mad, but it is those fleeting surges that are really rather insignificant; like yesterday when I was standing at the top step of my porch when my mini great dane decides to jump on me and I almost fell back – but that isn’t anger it is really fear.
I drove to work this morning thinking about this… “what do I get mad about”.
One that has been pointed out to me is that I do not like being teased, especially if there can be any inference about my being stupid.
I hate people who make fun of others. I try really hard not to do this myself, not always successfully.
Other things upset me, but they do not quite make me mad.
“A good book deserves an active reading. The activity of reading does not stop with the work of understanding what a book says. It must be completed by the work of criticism, the work of judging. The undemanding reader fails to satisfy this requirement, probably even more than he fails to analyze and interpret. He not only makes no effort to understand; he also dismisses a book simply by putting it aside and forgetting it. Worse than faintly praising it, he damns it by giving it no critical consideration whatever.”
~ Mortimer J. Adler, How to Read a Book: The Classic Guide to Intelligent Reading
One of the biggest arguments I ever got into when I was in college was about artist (and specifically to the discussion then, authors) responsibility. It was one of those life changing conversations and it has played out in my mins for the last 25 years in varying forms and with multiple applications.
One of the concepts that was brought up minimally then, but seems much more relevant now is that of the artists spectator. The actors viewer, the artists watcher, the authors reader. I would argue that art is a social process, there is an end-user and a silently understood agreement (a EULA, if you will) between the artist and the one who “experiences” the art. I am not saying that a painter paints for a specific audience, I am saying the artist paints for an audience. This plays out in many ways. I am not speaking to message of the art form, nor am I speaking to interpretation of the art form. I am speaking about the end-user. The watcher, reader, listener, or viewer.
I think we readers, watchers, viewers have gotten piss spoor about this part of the social contact. I know of only a very few people who consistently do these things actively, and even they slip up. We have gotten lazy, we react before fully reading, watching, listening or viewing. It may be that artists have stopped giving a shit about that their audience thinks or responds to their work, but on some level they have to want the people who experience their works to not pass by it in ignorance? I don’t know.
I, personally, write in the hope that the person reading my works thinks about something. While I may be working through something deeply personal, having a reader respond often offers me greater insight. If they misunderstand, it helps me learn how to be clearer.
I have a friend that writes. They have an incredible vocabulary, though it is sometimes a bit archaic. They are pretty good at giving the reader what they want them to react to. I would say it is a mark of a good writer. The interesting thing with my friend though, is that there is a general laziness with interpersonal conversation. That is frustrating. I imagine that the marvels and instant gratification of social media play out in these things. Based on how I see communication working out now a-days, people seem to like to get their panties in bunch. They read a post, or see a picture and form these hard-line reactions.
I am no saint in this regard. I caught myself doing it all the time. it was to the point where it became personally embarrassing. Thankfully I have some friends who loved me enough to tell me to go back, read it again. So, I would pull my panties out and go back. And 99% of the time, I had reacted rather than read.
So, what are some things that I do that help me know I am doing this?
If something pisses me off, I go back and read or look at it again. Occasionally I will read it out loud, or view it in a different place. I pinpoint the words/images that I am reacting to. I ask myself what are they trying to communicate? If I am still unclear, I ask questions. Am I reacting very strongly, then take a break and go back to it later (in instant gratification land, this can feel tough). In the case of written work, write it out. Look up words that you may not be sure about how they are being used (this one has been fun, for my friend with the archaic vocabulary, I sent them a list of all the words I had looked up when I had read their work… I thought it a fun conversation).
In the world where texting, email, posts, and comments have become a regular form of communication, it might behoove us all to become better at what I might call active appreciation. Actually, you do whatever you want… but as for me, I am going to try to listen, watch, read, and view with more attention.
Today, during what was originally supposed to be a quick glance through my Facebook feed I read the words “IN WOMEN WITH PERSISTENT CERVICAL CANCER”.
It was in all caps too. PERSISTENT CERVICAL CANCER.
the urge to cry from worry
I stared at my screen thinking; Is this a thing? Can women get cervical cancer… on repeat…
My joints started to ache, my skin flushed with needle pricks, my face got hot, I held my breath.
Is this really a thing?
How did I miss this… I mean, I am a medical school dropout for chrissake… one who has worked or volunteered in breast and cervical cancer issues for most of her adult life…
In my head, in that stunned moment after reading that, I had the idea that some women just kept getting cervical cancer… like one gets a cold… they are both viruses, after all.
So, I (somewhat reluctantly, yet with incredible haste) went to my very trusted medical internet sites to see if there was such a thing (complete with a search for an applicable ICD9 code) as Persistent Cervical Cancer.
the urge to cry from relief
Turns out, it is another way of saying metastatic cervical cancer, and just as I had thought before I had read that post cervical cancer recurrence rates (really, it is 5 year survivor rates) are linked to stage of initial diagnosis.
I wonder if my conversation with a person (a woman who had also had a cancer diagnosis, though of a different variety) just minutes before seeing this, where we talked about how certain things just tend to have an initial thought that you have a recurrence, played into how I reacted (what a sentence this is?!).
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.
So the first thing you see is a happy young Paul Newman. Which is fine, but for me it was really about his nipples.
Have I written about the weird fascination I have developed about men’s nipples since I had the cancer cut out of me? No? Maybe? I dunno, but it is this bizarre thing that I noticed shortly after coming home from the hospital and watching Netflix… It is one of those feelings like one might get when they become fascinated by a car accident, rubbernecking their way past it all attention focused on the crash and not on the road in front of them.
So, my first thought was Nipples are a “non-spiritual” thing that makes for daily happiness? I don’t think so?
But I read on, and decided I had to try it out and here are my observations:
1. Touch water. Which feel good type thinks telling a fire sign that they should play with water to feel better is obviously a narrow minded water sign… I played with fire, sat with the family in front of it while drinking warm turmeric hot chocolate.
2. Sweat once a day. I did, enjoyed it too! 😉
3. Eat real food. I ate a small piece of my fudge pecan pie, because it is that good.
4. Support, subscribe, read a good magazine (print or online) that’s better than you are—with a hot drink of coffee or tea and a little sunshine and quiet. I don’t believe that anything is better than anything else, it is not even a matter of degrees – shit just is so this one pissed me off because who or what the fuck is better than I am and to its contrary, what the fuck am I better than? So, in lieu of this better than shite, I picked up a favorite book.
5. Keep our clothes off the floor. PASS
6. Community. OK, so some of my friends (many who took care of me while I recovered) and I adopted a single mom with stage 3 breast cancer this Christmas… knowing how fucktastic cancer makes the holidays I do feel good about this one! Most of us went shopping together the other day and it was all kinds of awesome!
7. Don’t be afraid to be a fool. I am not really afraid to go here, I do it often… BUT, and it happens to be a big huge BUT… I have to do it, if someone else does this to me, I crumple like a dead witch that had water poured over her! Working on letting others tease me with cruelty.
8. Work in an office, or live with, a dog. I have “Flash aaaahhhh ahhh Savior of the Universe Gordon Boba Fett [redacted last name to protect the unborn].
9. Breathe in and out, slowly, once a day. Thankfully, I have to do this or I can’t get out of bed.
10. Never eat while standing up, or driving. I rarely eat in these situations, though I might want to consider no longer eating at my desk because that is how I consume massive jars of peanut butter.
11. Never cell phone while talking, or walking. I hate it when people do this to me, seems only fair.
12. Hike. I walk, on occasion.
13. Stop obsessing about one’s own happiness. I don’t think I obsess about this, though it would be nice to feel less of the angry ennui.
14. Put on a favorite song and sing it out, like we mean it. Yes, during most commutes home.
15. Pick up trash in the street. I try to do this every day, try – don’t always – but never saw this as a way to feel less grumpy.
16. Watch a movie and eat a little too much ice cream/pop corn/vegan ice cream/edamame/nuts. With peanut butter!
17. Put a few photos of loved ones around. I do this, in many ways.
18. Be honest. an important value I hold dear.
19. Sleep more. My fit bit helps me keep tabs on this. Interestingly enough I find that on the night I have time to drink turmeric milk (with or without hot chocolate) I tend to sleep really well.
20. Write. this. here. meh.
21. Meditate. Ever since I became inspired to teach my son to meditate I have had to do this every night. He loves it, we usually play some you-tube videos for this, but I stay with him for a bit and play along.
And… just because I love to self torture, here are my reflections on how I tried to fight being grumpy the “elephant journal way” with the suggestions not listed above (regurgitate much elephant journal?):
4. Friends – phew, this is hard – I have two days worth of texts from friends that I have to reply to because they want to do something for my birthday.
5. Sunshine. Arizona.
7. Flirt – I work in a school who would be my main contacts, that is just creepy.
8. Dress well. I have played dress up all week. It helps.
I live writers block… i think it comes from some deep place of self hate as I noticed that when I get some rather weird feedback I tend to stop. I once wrote a story about a young girl getting molested by an adult as part of a series of reflections on things that are not part of the beautiful like I want to pretend believe exists.
I had a writerly friend read it and the feedback I got was that it was “too porny”, which was the last thing in my mind that I was trying to go after. That comment sent me in to a tailspin. I haven’t even revisited that project, mainly for shame of trying to describe what it is like to have an adult sexually molest a young child.
Yes, this is indeed heavy stuff, and some of the most powerful stories that I have read will often tell stories like these. It was a tough experience to even write, it was intense in a way writing has never been for me before. I was emotionally drained, physically exhausted, I was an emotional mess… but I went through it and wrote it.
Since then, it has been a year with relatively no writing for me… other than a woeful trudge through navigating my cancer diagnosis and trying to make sense of it.
But that experience is still in my mind, not the critique mind you, but how I felt writing that story. I think I have only let my writing be more like journaling because opinion is safe.
I think that for me, writers block is more about resolving some issues than a true inability to write. Those issues can be any variety of issues… from personal to literary.
So I love this prompt, and reading what everyone else wrote… I may have to go get some vodka as one person suggested.
I won’t hat tip another participant post, this post touches on some serious themes and they may not want to get associated with it.
The face is the mirror of the mind, and eyes without speaking confess the secrets of the heart.
~ St. Jerome
Today I scheduled a follow-up eye appointment for October.
As I opened up my calendar I realized that the four months would land on the day before I had my surgery, which was when my eye problems started.
In the eight months since my life was spared and my body was torn apart in order to do that… a lot has happened.
One of the things that I find most striking is that my eyes have changed. I have been trying to figure out what it is that I have noticed.
I am not sure when I started to think my eyes looked different to me, but I recall wondering if somehow my irises had become lighter or cloudier in color. Cataracts at my age?
The crux is that they don’t look happy to me, they looked pained, tired, and perhaps even scared.
I don’t know that I am any of those things, but I am a very different person than I was in 2014 B.D.
That B.D. is Before Diagnosis.
This process has been hard, but the hardest part was learning to stand up for myself. Standing up to a mother and aunt that I know love me, but who felt that age gave them some sort of prize that included tearing me down… I am sure that is (was) not their intent… but as they threw things at me that I would have previously have bowed my head to and ignored but in the middle of my fight to feel whole again seemed unduly cruel coming from them. As I said, I am sure they did not mean it, but they still hurt me very deeply on a level that a doctor could not touch.
I think, perhaps, that is part of the cloudiness that I see in my eyes.
It is also navigating my health after a pretty invasive surgery, the unwanted weight gain, the change in shape, the pain, the aches… the health of my eyes included.
They are better now though, the scars left on them through repeated injury (and a misdiagnosis) are healing, are almost gone. The burden of the change of lifestyle for them is permanent… eye drops for life, they said. Keep them moist, they said. I will, I reply.
But when I got home from my appointment today, I looked in the mirror and still saw that certain kind of cloudiness, and I hoped it was not permanent.
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.
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.
And when I thought about it some more, I saw so many possibilities and had to chuckle at the notion that each one had at least one “rule violation”.
I thought about one dealing with the many faces of cancer; from the physicians that find it, the pathologists that decipher it, the oncologists that treat it, the people who have endured it, the families of those who suffered it, the nurses who care for them, the scientists researching it.
It would be good, but it is a theme and violates the programming rules.
Then I thought about what it was like growing up as a third culture kid, and how cool it would be to get other people who grew up that way. I think my friend Doralice would have some wonderful insights, as would my friend Sparrow, and my friends Jeff and Erica. I think it would be interesting to give voice to that kind of experience. It is a bit unusual.
I have met so many interesting people, I would love to have an event to hear them talk… the Jivaro indian that had to flee his tribe because he wouldn’t convert, the people who started putumayo, the circus people, the rodeo folks, singers, entrepreneurs of the ridiculous, those off grid (the hardest to organize), photographers, movie stars, cartoonists in the golden era, explorers, survivors, hedonists, narcissists, and so on.
That got me to thinking about what would happened if I was told I had to give a Ted talk… kind of talk could I give? what would it be about?
My ideas for Ted events is large…. but the list of things I feel I would be qualified to talk about is pretty non-existent.
I suppose I could talk about how being diagnosed with cancer was life changing in some spectacularly subtle ways… or what it was like being born to a bullfighter father and an explorer mother, though that is really their stories. About being a child of divorce (booooooring). What it was like managing a high stress pregnancy, most of which was spent on bed rest (gag me).
At this point in my life, I think I would talk about why I think vaccines are important, from a theoretical view, and cultural view, and prevention view, a mothers view, a survivors view,
What would your Ted talk be about?
*stands for examine your zipper, pretty darn quick, before I look (a childhood phrase)
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.
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.
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.