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”.
Partial 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.
When you are surrounded by seemingly infinite darkness, you stave off the madness by telling yourself the light will return.
I have a made a tear in the chaos. And I, like the butterfly out of a chrysalis, will continue breaking through.
“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.
This afternoon I was playing with some world building and magic-system ideas for my current novel and I started to get very excited about said ideas. Things were clicking into place, one idea leading to another, each neatly solving a problem. Click, click, click. My best game of Tetris ever. With each new idea, I got more excited; my pulse quickened, my energy levels rose. “This is why I do this,” I thought. A little voice in the back of my brain likened it to a high, but without the troublesome side effects afterward. But immediately after that thought, I realized, no… the writer’s high does have its own dark side. It lures you in with good moments, and without warning, the trap snaps shut, leaving you alone and in the dark, wondering what the hell just happened.
And with that, the next thought…
Working on a piece of writing is like being in a relationship with a troublesome, tempestuous lover. It is the kind of relationship that everyone tells you isn’t good for you, but you just. can’t. quit.
When it’s good, it’s good. That tempestuous nature ignites something within you, an ember that fans quickly into a flame. You can’t stop thinking about them, everything reminds you of them, and suddenly, they are your entire world. You know you’re flirting with fire, but that is part of what makes the experience so enjoyable, so exciting. You get giddy just thinking about them, and when things align, you see stars.
But that very same passionate will eventually work against you, sooner or later. It’s inevitable. The flames will continue to fan into an inferno that you can’t control. Where there was once was magic and euphoria, there is instead heartache and desolation. Nothing will go right. Nothing you say or do will be good enough for your fickle, mercurial darling. There will be tears and no small touch of madness on your behalf.
And just when you are ready to call it quits, and break it off, for good this time! Your little lover will change on you again, maybe even simpering, whispering a thousand apologies. Assurances and promises will slip off their silver tongue, and there will be one final sweet offer you just can’t refuse.
And so, the process begins anew.
Is it any wonder so many writers drink and/or have gone insane?
We court insatiable, temperamental lovers, and keep coming back for more.
Oh muse, thou art a heartless bitch.
For what it’s worth, I’ll take the lows with the highs. I’m still working on those ideas I mentioned, and still excited but tempered. One might say that is the key all along: temper the flame, and don’t let it consume you. Easier said than done…
I notice that people have noticed my little blog. I had forgotten the blog was connected to my twitter account, so when I posted it sent out messages to the Twitter-verse.
Not a bad thing, really. But it’s gotten me some new readers and views already which is not something for which I was prepared.
So now I’m feeling the pressure… to post and actually, you know, say things.
Well, I do tend to do well under pressure (usually).
(I’m still not sure what to post about next though. My brain is drawing a blank. Thanks, Chemo.)
Here’s hoping I don’t disappoint.
Topics you may find discussed in this blog:
(in no particular order)
- Molecular Biology
- Conservation Biology
- Evolutionary Biology
- (Living with) Chronic Fatigue Syndrome (CFIDS)
- (Living with) Fibromyalgia (FMS)
- Gluten-free Cooking
- Gluten-free Baking
- Pet care
- Science Fiction
- Role-Playing games (Table-top, Board, and Computer)
- Star Trek
- Star Wars
- Gothic Sub-culture
- General Science and Geekery
- Book and Movie reviews (see: Science Fiction, Fantasy and General Geekery)
- Animal Behavior
- Sociology (and ideas on human behavior)
Topics you will not find discussed in this blog:
This isn’t to say that topics are limited to the first list, or that you will never find topics in the second list mentioned. Rather, this is a general guide.
I’m not including religion or politics because they are the standard “do not discuss in polite company” topics, but more because I have no desire to discuss them.
Both of those subjects tend to carry a high amount of emotional weight and personal response with them. I’ve found that people are pretty inflexible when it comes to those subjects, and aren’t likely to change their minds or core beliefs, even if another person has a really good point.
This isn’t to say these topics aren’t worth discussing or exploring, and you may find that these topics do come up from time to time. But on the whole, I stay away from them. If I do discuss these topics, it tends to be from a removed perspective, where I explore a larger idea that happens to include those topics. (E.g. how religion affects how we make decisions, or the history of a political party)
Readers and followers are welcome to comment and discuss those topics, if they happen to come up in a particular entry, but I will ask everyone to be civil.
Discussion is awesome. Pointless arguing and attempts to persuade someone to change a personal, emotionally charged belief? That’s a bit messier, and I’d like to avoid it here, thanks.
Let’s focus on the first list, the “fun” part, yeah?
If you see a subject that catches your eye, stay tuned. 🙂
I’ll be using the categories feature to label my posts. You can see a list of categories on the right hand menu of the blog. Clicking on a category will take you to where you can view posts on that particular subject.
Notice that a category topic will not appear until there is at least one post on that topic, so while you may not see a topic now, it may come up later.