Self definition. For better or for worse.

1 year and 8 months post chemotherapy.
I am not who I was.
It was easy, if not naive, to think that I would return to the way I was before after the chemotherapy was over. It was easy to believe, that after a few weeks or months of “recovery”, I would be the same. I knew better, deep down inside. But I suppose, the idea of returning to my “normal” was a coping mechanism.
I am not who I was before chemotherapy, before cancer.
I will never be who I was. This is true for most of us, as we progress through life I suppose. But the change is usually more gradual.
For better or for worse, I am changed.
I am still learning how to co-exist with this body; it’s shape, it’s movement, it’s limitations.
It takes longer to do…everything. I can’t move like I used to. I don’t recover the way I used to.
Even my mind is different. I get lost more easily. I can’t focus. I forget.
Recovery is the hardest part of dealing with cancer. Can you believe it?
In some ways, chemotherapy was easier than trying to navigate, cope and learn how to live with a body and a brain that is very unfamiliar.
In the meantime life goes on. I’m not sure if it was the “World” or myself (both?) that expected me to go back to “the way things were”, as though none of it had ever happened.
 1 year and 8 months.  I know that may seem “long enough”, and that I should be over it by now.  That I’m making excuses,  that I should be back to normal.
It has taken me this long to realize that will never be possible.
For better or for worse, I am changed.
Some of the world doesn’t care. Work. Bills. Strangers.
But for those of you who do, try to be patient and make room for the new me.
I am forgetful, unfocused and slower these days. But I also would like to think I’m a bit more empathetic and thankful.
For better or for worse.
Be patient. I’m trying.
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Chaos theory. Patterns and Butterflies and Pushing Back the Darkness.

mandel_zoom_08_satellite_antennaPartial view of the Mandelbrot set. Step 8 of a zoom sequence: “Antenna” of the satellite.Created by Wolfgang Beyer with the program Ultra Fractal 3. Image licensed Creative Commons Attribution 3.0 Unported License.

Years ago, long and far away, my body was unpredictable. I’d have good days and bad days, often more bad than good, without any apparent rhyme or reason. It was chaos and I,being as I am, tried to find a pattern.
It took a long time. Finally, eventually, I figured it out…mostly. I realized that gluten was the biggest (but not only) contributor to the triggering of bad days. Going gluten-free didn’t solve everything, but it was something to hold on to and work with.
I still had bad days, but I could predict them and work around them.
And then…the pattern shifted. It became unpredictable again. Chaos was starting to take over. A butterfly beats its wings in Taiwan.
And then, I got cancer.
I won’t say cancer was the reason for change in the pattern. I don’t know. I will never know for sure.
But what I do know, is that the battle to stop the cancer, was another fly in the ointment. Another butterfly. Another change.
Through chemo, I stopped trying to find the pattern. There was no use, it seemed. And like all things, wonderful or terrible, it came to an end.
And though the experience of chemotherapy was chaotic, once it was over my body was supposed to at least start the process of getting back to “normal”.

I tried to find patterns again. It’s what I do. Patterns and logic and sense. Because the bad days are manageable when I know how long they last, and the possibility at least exists that I will, eventually, make my way back to “normal”.

When you are surrounded by seemingly infinite darkness, you stave off the madness by telling yourself the light will return.

But there was still none to be found. I tried and I tried and I tried and every time I think I found it… the algorithm, the reason… the sense...it slipped away again.
Bad days, good days. They blurred together. There seemed no logic, or exit, to the endless maze.
It is enough to make one go mad. The darkness encroached; no longer creeping, but rushing forward, removing the light.
And perhaps it is that madness acting now. Maybe my brain is so desperate that it is finding patterns, when truly there are none.
But…
I think… I see the patterns emerging. Again. Finally. They are new patterns of course, but they are there. I can’t see the whole picture. I can’t see the finality of the pattern. But the light, wan and thin, is starting to emerge from the end of the tunnel.

I have a made a tear in the chaos. And I, like the butterfly out of a chrysalis, will continue breaking through.

On the uncomfortable nature of change and progress

(The following has been taken, almost directly, from my personal journal. There’s been no editing and it may seem a bit more fragmented than usual. But I wanted to share it, for myself and others. I worried if I did too much editing, it would never be published).

On the heels of Saturday’s million woman marches…which I did not attend, but followed. Saturday was not a good day for me. My body failed me in multiple ways. Energy was low, I was in pain, and a little fog cloud of depression hovered around me. These things are not new to me, but they did impact what I was able to do. In the following entry, I start reflecting on being unhappy with being unproductive….


I feel guilty, for not only not being productive in my own life, but also in not being more active in society and politics. I believe in ideas and concepts that should be universal (but aren’t). I’m afraid not only for myself, but more for the friends and family and people I don’t even know, who will be negatively impacted by this current buffoon in office. And yet I do, not nothing, but very little.
And I make excuses. Yes my health and energy levels play a significant role in what I can and cannot do, but they don’t preclude me from doing everything. Yes my own life and goals can and should take priority, but that’s not the only thing I can make space for.
I do not think going to the march yesterday would’ve been a good idea, but I also know, deep down, that even if I felt well I didn’t want to.
I understand the importance of public displays, but I am uncomfortable participating in them.
Why?
I think, it is a fear of “being caught”. A fear of punishment, of retribution. And while that can be a real fear, for a middle class white woman, what do I really have to lose? It’s a bit of cowardice on my behalf, and I’m not comfortable with that.

I could call and send letters to my representatives, and I have done that…somewhat. But not enough. Not nearly enough. I need to do more of that. That is something that even in my fatigued state, I can do. It’s just…uncomfortable. But that’s really too bad.
Change and progress isn’t made by staying in one’s comfort zone.

There is much I cannot do. There is a limit to my energy and mental and physical abilities. There are things that I could do that I don’t believe will make a difference.
But there are things I CAN do, if I could muster the courage to do them.

Where did my force of will go? It disappeared, somewhere. Fizzled out, among the myriad of minute daily trials.

But what is the use of a life, if one doesn’t make a difference?

I can sit in my corner and exist and struggle and die. Or I can do…something.

I hope to do something with my writing, but that is a longer goal. That is distant, far-away.
There is the here and now. I need to be better about making small changes and risks, to support the causes I believe in.

It could be as simple as making one phone call a day. It does not have to be monumental. But it will be uncomfortable.
I suppose in a way, my personal call to action here is still selfish.  I don’t want to live my life and die with the knowledge that I did nothing to help. Worse, that I did nothing because I was scared, meek. That I was complacent.
But I think most things humans do, even for good, at their core are selfish. The act being selfish isn’t enough to mean you don’t do it.

I am going to try to be better this year. Take action where I can and where I feel I can effect change. I need to be better. We all do.

The Existential Void

(It’s been a while hasn’t it? )

Heavens_Above_Her.jpeg
“Heavens Above Her”By Ian Norman (http://www.lonelyspeck.com) – Flickr and the review where it was used on Lonely Speck : [1], CC BY-SA 2.0, https://commons.wikimedia.org/w/index.php?curid=41734886
Some days, I feel very old. Older than I am supposed to be. And other times, less frequently but increasingly so, I feel very young, and naive, and foolish and unlearned. Still.

Existence seems meaningless. (Here comes the existential dread!)
We live. We do things, of no real consequence. We die. Even events that seem huge and meaningful and catastrophic, ultimately, are meaningless. What does the Universe care if the inhabitants on this planet blink themselves out of existence? What does it matter if we torture and kill ourselves, each other? What does it affect? Anything? Nothing.
I can understand why people believe in Gods and carry Religion, like a torch in never-ending darkness. I can understand it, even if I don’t agree with it. We are children, we humans. And the night is dark and full of terrors that we cannot even begin to understand.
We still need a parent to guide us. We still need to believe that all is well, and even the most vile events happen for a reason. A good reason.

But do they really? I don’t think so. But what do I know?

I’m just human.

Maybe, it’s time we stood on our own feet, and made our own light in the darkness. If the events on our little planet don’t mean anything much in the grand scope of Existence, maybe that means we need to work even harder to put forth Good in our world. Maybe that means that we need to ensure that the events which do play out on this marble, in the Time of Mankind mean something to those that live it.

The Return and… the conflict of self-identity

It has been a while since my last post, and I must confess I am disappointed in myself.
In further confession, the reason for my silence has been that I have foolishly adhered to the very idea I rebelled against.
I had told myself that I was going to stay true to myself, and my ideas on writing. I was going to do what I wanted, discuss what I felt like discussing.

And then when it came time to actually write something…. I …stalled.

To be fair to myself, some of the mental block came from my ever temperamental health. Being sick is never fun, and it definitely messes with my cognitive ability. I went through a period of about two months where I was running on autopilot. Higher cognitive functions were a no-go.
But in that period, I tried. I thought about this blog and what i wanted to say. I had some bits and pieces of ideas clattering around my mind, taken from random conversations and mundane pieces of life. But, I could never expand these ideas into something larger, something I felt was worthy of a blog post.

A lot of my ideas were derived from everyday conversations and thoughts. Day to day, daily stuff. But I didn’t want to turn this into a daily, journal type blog. My day to day thoughts and exploits weren’t interesting enough for others to want to read.

Yeah, I’m kind of dumb. I’m working on that.
I still am afraid of, and don’t want, this to become a journal type blog. But what my addled brain was failing to register was that the thoughts that others might be interested in were born from the every day.
And of course, I was breaking my own rule of keeping this blog for me , writing about the things that I wanted to write about. I was already forgetting my purpose: to let my thoughts and ideas roam.

So with that awkwardness behind us ….

One of the trains of thought that kept rattling around my brain was one of identity and belonging.
In a way, it’s fitting for this return post, as the idea was borne from my upset at not being able to write anything (for this blog as well as other projects) for quite a while.

I frequently go through long periods of time, with “long” being anywhere from 6 months to a couple of years, where I am unable to write much of anything at all.
There may be occasional Facebook (or back in the day, LiveJournal) posts. I may scribble a few scraps for a story idea somewhere; pen down a scene or two, scrape out a bit of poetry, but for the most part no really solid writing happens. There are no new stories, no character development, no chapters or pages.

A lot of it has to do with my health. When my body doesn’t work, the brain tends to go with it, and my ability to write (and even think) coherently is diminished. Cognitive dysfunction is a pretty major symptom of Chronic Fatigue/Fibromyalgia, and it’s something I’ve struggled with for many years. It’s like someone stuffed cotton…in my *brain*. There are thoughts and ideas and critical thinking abilities, but they’re all covered in fog… dense, gray, suffocating fog. Nothing flows or moves easily through the mind in times like this, and just when one manages to reach and grab a thought or coherent bit of language, the fog turns to smoke, and slips through one’s metaphorical fingers.

After a long enough period of this, you start to wonder, and doubt. Did you *ever* have the ability to think, work and write coherently? Was it all just a dream, were you fooling yourself?

Depression is also a part of this phase… and the inevitable thoughts surface:
If you can’t write any more, if you haven’t written in x years, are you still a writer?

This is where my mind starts twisting in on itself about the concept of identity.
How much of an identity is what you think of yourself, versus what others think of you, versus, what you actually do?

That is, if I only write occasionally, and don’t think of myself as a writer… but others view me as a writer, and I am actually writing (if sporadically), which is my identity? Writer or not?

Am I defined by my illness? Many would say no, absolutely not.

But as much as I’d like to believe that, it’s hard to think otherwise when I see how much it affects me, changes me, and guides my course in life.

So maybe I AM a writer, but I’m also a girl with a/n (sometimes debilitating) illness. So the illness changes the nature of the writing identity. I suppose I should just embrace that, and accept all aspects of my identity.

So perhaps it’s not that identity is solely what you think of yourself, or what others perceive you to be, or just your actions. It’s a multi-faced gem of all of these and a few other ideas as well. Even more, I think some parts of one’s identity can be, fluid and changing, evolving as the individual goes through life experiences.That is, the core aspects remain the same, but humans (tend to be) are more complicated than a single core aspect. So those labels that we layer on ourselves, those can be changed.

I can be a writer… who is also dealing with an illness, who may not be as prolific as another person, but are still.. a writer.

There was another point I wanted to make here, but I’m going to rely on the “occasional cognitive dysfunction” part of my identity and call it a day and let this post go to roost. 😉