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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Self-affirmation. The infinite loop.

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It’s not new. It’s an old rhythm. I go round and round the endless circle. Doubting, wondering, lost in self-created labyrinths of what-if’s and never-will-be’s. Only to emerge again, full of determination.

Regardless of the eternal question (am I good enough?), irrespective of its answer, I will always tell stories.

Even if they are never viewed by another. They are not Schrodinger’s cat. That do not cease to exist because they are not seen.

I will write them. I will create.

I don’t have a choice. There’s no other option. I don’t know how not to. I don’t know any other way to “be”.

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.

Dear Friends and Family of a Cancer Patient or Survivor: Please Don’t Tell Us We’re “OK”, Okay?

“No [cancer] patient’s experience is the same.”

This sentiment was one I heard and read often at the beginning of and throughout my treatment.

It was, usually, in reference to the effects of the treatment itself. Different cancers, different chemotherapy regimens, different dosages, and the small but significant differences in the human body all contribute to how a patient will respond to treatment.

It wasn’t until after my treatment was over that I would realize how true this idea held for the experience as a whole.

Each individual’s experience is filtered through the lens of their own personality, past experiences and quirks. What may be helpful and soothing for one person, may be unhelpful and damaging for another. So what I am about to express is not intended to be a blanket statement. I am not suggesting that every cancer patient or survivor feels this way.

Rather, I am expressing the thoughts and insights that were and are helpful to me.
At the same time I have discovered, from conversations and discussions with other cancer patients and survivors, that I am not unique in my feelings.

This letter is not for everyone. This is for those who were, who are, afraid to upset the ones they love and who are afraid of coming across as too negative, or discouraging. This is for those who are afraid of saying, “this is what I need from you”. Because when you’re already relying on others for help and support, it can be difficult to ask for one more thing, even if that “thing” is what you need more than any other.

This letter is so you don’t have to say it, so you can quietly repost, link, or email to the ones you think need to hear it.

This is for you.

(* note: my use of the words “we”, “us” and “they” are therefore not referring to every cancer patient and survivor, but those who resonate with the thoughts and ideas expressed here)


Dear friends, family, and loved ones of a cancer patient or survivor,

I know you mean well. I know you care, or you wouldn’t be reading this. I know you likely want, more than anything, for your loved one to be healthy and happy and cancer and pain free.
Trust me, they want that too.

I can imagine that when your loved one expresses fears, about treatment, about “what will happen”, about the cancer returning (relapse), you want them to feel better. You want to tell them that “everything is ok.” I can imagine that you might say this because you want to believe it yourself.

But before you say or type those words, before you let them slip from your mind and put them out in the open…. Stop. Consider the very real, and unpleasant idea, that everything is not ok. If everything were ok, you wouldn’t be in this situation.

And your loved one who is going through it all, understands that better than anyone else.

But when you try to assure us that everything is “ok”, it can instead serve as a painful reminder of just how distant you are from our experience.
Though you’re attempting to provide comfort and solace, we instead feel more isolated and alone. When you tell us “it’s ok”, it can feel as though you’re dismissing our very valid fears. This is especially true for survivors who are expressing fears about relapse.

It happened once, it’s more likely to happen again.

We defied the odds, and not for the better, when we developed cancer.
Before the official diagnosis we (likely) often heard and read how unlikely a diagnosis of cancer was. How it was much more likely to be “something else”. In my case, the word “rare” was used.

In some ways, the initial discovery, that phone call or conversation, that diagnosis itself, is the most traumatic aspect of having cancer.
Until that point, you and your brain rested safe knowing “It’s unlikely. It probably won’t happen to me. Cancer happens to other people. It doesn’t happen to me.”

But unlikely and rare don’t mean impossible. And once your brain realizes that it CAN happen to you, and it is and it did happen to you… well that’s not an experience you can erase or forget about.
Some individuals will walk away from the experience of having cancer unscathed emotionally. Some will walk away with severe PTSD. Some of us are somewhere in the middle.

For me personally, I think I’m doing better than some, but I’d be lying if I said the experience hadn’t changed me at all. I’d be in denial if I said I didn’t have a bit of PTSD, and I don’t have triggers.
The smell of isopropyl-alcohol. The scene of a waiting room. Going for a CT scan (no matter the reason).

And apparently, the phrases; “everything is ok” and “it’s unlikely” are also a triggers for me; those are the words I heard, the words I told myself before my diagnosis. And, well, I know how that turned out.

Fear is unpleasant but sometimes necessary

Fear is an unpleasant and stressful thing. Over an extended period of time or in excessive amounts, fear in unhealthy. But we also need fear. Without fear, we (as a species) might not learn from unpleasant and painful experiences. Without fear, we might behave so recklessly and foolishly as to not survive.

Most of the time, for the cancer patient and survivor, fear is just an unpleasant part of the experience.

Sometimes that fear can lead us to understand our own bodies better. I have read no shortage of stories about those who did experience a relapse, and it was the patient who reported an issue, before scheduled checkups and testing could find it. It was because of the patient’s thoroughness, of their hyper awareness of their own body, that the relapse was discovered. It was, in a way, their fear that helped them. Sometimes, our fear is helpful.

We know that most of the time though, our fears are not helpful and that being in a constant state of fear is not healthy. But, despite that knowledge, it can be a lot of work to keep that fear away.
Sometimes, part of keeping that fear from taking over is acknowledging it.
Sometimes, we just need to “get it out”.

And in those times, we just need someone else to listen. Without judgement. Without a recommendation or a solution. Without any other intention.

Just listen to us.

Let us get it out. Let us express that fear. Sometimes, that’s all we need to do. And in letting those words escape our lips, or fingers, we’re letting the fear go with it.

So let us get those words out. Let us release them, without reminding us of the words and the odds that we already defied.

I know it’s hard. It’s hard for us too. And maybe, there are or will be times when “we” are “stuck”. Maybe we’re in a negative loop we can’t get out of. Maybe we really do need to hear those words, “it’s ok.”

But don’t make that judgement for us.
Don’t try to dictate our experience and emotions. Don’t try to protect us from ourselves.

Instead, ASK US.

When you feel the urge to tell your friend, your lover, your child, “it’s ok” in response to their fears, instead, ask them “What do you need of me? How can I help?”

You might be surprised at what we say. We might tell you we need to hear those words. We might tell you we just want you to listen. We might not say anything at all and just hug you.

But the only way for you to know, and sometimes the only way for us to know, is for you to give us the option.

Ask us, and let us tell you what we need. Both parties will be better for 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. 😉