Health and Sickness is an Invention

We're getting into some heavy stuff today. 

As I'm sure you gathered from the title. 

This concept of sickness as an invention is not new for many cancer patients but perhaps they did not know how to put it in words. I sure didn't until now. But when I heard it my entire mind went AHA.

Let's back track. I'm reading the works of the philosopher Foucault for my literary theory course. 

WAIT! Come back! Keep reading- I swear I won't be boring.

Foucault examines the way power and knowledge coexist in our culture. He argues that forms of knowledge (discourse) become power (practice.) There's some basic framework. In addition to that, he writes extensively on health and sickness. 

Acccording to Foucault, health and sickness is an invention. How is that an invention?

Because it is unconciously spoken of as a moralism. It's good vs. evil all over again. 

Which he argues, is arbiturary. There is no good and evil. These are categories that we (us silly humans) have set up for ourselves. But they do not exist.

So what is evil and what is good here? It should be obvious. Health is depicted as the universal good, right? That makes sense. There's this constant discourse all day, every day, of what is healthy. To be healthy is to be good. It is to succeed physically. 

Health is seen as a capacity. Cardiovascular power, Foucault's words, is the goal. How long can we live? How much can we physically endure?

And that is just another form of discourse. Of writing, of thinking, of believing. This discourse (fancy talk for writing/vocalizing) isolates the body into a moralistic idea. 

How is that a problem? 

Think about it.

If my body has cancer, as it had just a few months ago, am I sick?

Physically, we think 'sure.' But is my being sick? 

When it's asked in that framework, don't you want to say no? (I hope you do.)

Of course not. My mind is not broken. I am not a sick person. One part of my BODY just happens to have cancer. My cells have chosen to divide in the worst way but does that make the rest of my body sick? My cancer originated in my chest, in the lymphnodes of my thymus (little organ thing by my heart,) but the rest of my body was physically strong. 

So was I sick? Not technically, right? Just one aspect of my body. Not the entire body as a whole. Not my mind which I would argue is more essential than my body itself. 

Is the cardiovascular power to live longer, to physically endure as long as possible more essential than the mind? 

That could be a matter of opinion. We could argue that the mind can't exist without the body and vice versa.

So it would stand to reason that the body cannot be sick if the mind is whole, right? So if I have cancer, am I sick? 

No. That's a moralism. That's a category of discourse. 

What do we associate with sick? Think of what comes to mind. Frail. Weak. Not well. The lesser of what is good.

Hello, moralism! Get your moralisms off my body! 

This helps set up that boundary that often surrounds cancer patients and survivors. This wall of sickness comes up around us to separate our weaker moralism from the greater good of health. 

And this doesn't diappear when you're in remission. I am still surrounded by a wall of moralisms that separate me from the collective good. My body was sick, therefore the rest of my being was categorized as sick and my being now is in recovery from the sickness.

But what if it was never sick to begin with?

My mind remained entact. The rest of my physical being was strong. Hell, it was the medicine that made me weak, not the origin of the 'sickness.' Does that make the truth of medicine manufactured? 

Acorrding to Foucault, yes. Medicine is just a tool to fix the biological issue. But we perceive medicine as this moralistic good. Which gets even more complicated when we think of the COST of medicine, but let's save that for another time. 

Let's not just think of medicine here but also isolation. What do we do with the sick? We hospitalize them, right? We isolate them in clinics, hospitals, doctor's offices. We place the sick into a matrix (Foucault's words) of health. (And I know, that's what we need to do)

I love this quote from Foucault on this idea of isolation and the sick, "Different power apparatuses are called upon to take charge of "bodies," not simply so as to exact blood service from them or levy dues, but to help, and if necessary, constrain them to ensure their own good health. The imperative of health: at once the duty of each and the objective of all." -Foucault, "Practice and Knowledge"

The duty of each and the objective of all. Right? Isn't that the way we see health? How do we get to health? By isolating the body (placing it in the matrix of health- doctors office,etc.) and then using medicine to bring health. To eliminate the sick and to get rid of the bad. To make strong and to eliminate the weakness. 

I doubt I'm making sense but let's roll with it. 

So if medicine is perceived as good, isn't the expectation that we should always take it if it's said to be needed? This gets more complex when you think of cancer though. Is chemotherapy good? Would you put it in that moralistic category?

I want to say yes but all the long standing nerve damage and pain in my hands, legs, and feet wants me to say no. 

My lack of fertility (which we don't know yet, if it's permanent) wants me to say no. 

My increased risk for heart problems and secondary blood cancers wants me to say no.

But my cancer free cells want to scream YES. 

Chemotherapy is essentially a poison. But we accept (using this term loosely) it as medicine because it poisons the sickness thus destroying the bad. 

Am I healthy now that I am cancer free? Despite all the long standing impacts chemotherapy has wreaked on my body? Is my body good?

That's a complicated question. Physically I am now weaker than I was before due to the medicine I received despite the absence of cancer. 

What if we just throw all those moralisms out the window?

I'm not saying cancer isn't bad, it is. It sucks, I hate everything about it. But it's not some moralistic evil. It's a circumstance, an unlucky and horrible one, that just happens. It's not evil, it's cell mutation. we perceive it as a sickness because it has the potiential to destroy the length of our lives which is the ultimate goal of health. 

I am not healthy nor sick. I just am. 

I am not separated by walls of discourse and categories that isolate me. I am not perceived as lesser due to my assocation with the weakness that was cancer. 

It's an interesting thought, isn't it?

And how relevant at explaining why I feel the subconcious need to hide the fact I survived cancer from new friends, students, and colleagues. I associate, by ways of moralistic categories, my cancer history as making me lesser. As bad, as frail, as weak. This subconcious reaction to feel shame for sickness originates in the perceived narrative of sickness as bad. Why else do we feel shame for sickness? Why do we feel lesser? Why do so many people run from the reality of sickness when confronted with it? It is because it is seen as BAD. And yes, it is bad in the context of how we see it and experience it. But the sickness itself, the origins of cancer, is just a simple biological cell mutation. That's all it is. But it's distorted into this narrative of evil that by assocation the person with the sickness cannot escape from. How can the cancer be evil and yet the person stay intact from that negative assocation? We can't. Our discourse won't allow it. 

Who wants those associations? Not me. 

Or any cancer patient or survivor, for that matter. We are not sick. We are not lesser, physically or otherwise.

We just are. 

Survivorship Clinic

Hey lovely readers.

WOW this is the longest I've gone without posting since I first made this blog.

Things have been busy. I've been wanting to write a post the past few weeks but I just never have the time.

So this is going to be a doozy.

I participated in a survivorship clinic day through my local cancer clinic. It was a day of resources, doctors appointments, and general information for survivors. I found it helpful but horribly depressing.

This is how the day went:

They threw me in the physical therapy center first where I talked mainly about my neuropathy issues and fatigue. They recommended an exercise program to help the fatigue but the neuropathy doesn't seem to have an easy fix. Which I knew and it just sucks more and more everyday.

She recommended compression stockings to help with the swelling caused by the neuropathy. Oh joy. That is JUST what I want to wear. This just keeps getting better and better! Pffffffff.

Other than that, the visit was pretty helpful and I opted to join a twice a week exercise group for cancer survivors to help the nerve issues and fatigue.

After that they led me down to see the doctor. I didn't realize this was going to be as depressing as it was.

HOLY JEEBUS. Talk about the talk of doom. It basically went like this:

"HI THERE. You beat cancer! Now let me tell you about all the wonderful things the chemotherapy did to fuck up your body and put you at risk for secondary blood cancers, heart problems, and nerve damage! Oh yeah, and no drinking alcohol for you and eat those veggies!

Hey, how about a cookie to go with that news?"

Oh wait, no one gave me a god damn cookie. Seriously doctors, hand out some cookies with your doom and gloom news.

So after that lovely hour of "Hey you're alive but not for long!" they sent me off to talk to the oncology counselor for some wrap up questions.

(I'm really only at an increased risk of like 5ish percent for other cancers so its not as dire as it sounds- I'm just being a sarcastic butthead.)

I love the way they packaged that. It was like a shit sandwich. They lead you in with some general advice, follow it up with a great massage of lavender and bliss and then send you packing through the gateway to hell and once you crawl out of that, miserable and shaking- it's off to the shrink!

Great tactics.

Sarcasm aside, it really was helpful. And meeting with the counselor was actually great because she had a sense of humor and gave me a cool bag to keep. Yeah, cool bags.

She validated my feelings on the whole 'your cancer is gone so half your support crew heads for the hills!' and told me that's totally normal for survivors.

Which sucks to hear but it's always nice to know the abandonment you feel is the same feeling felt by all the other cancer survivors too.

Yay abandonment!

(Disclaimer: if you're thinking 'HEY I didn't abandon you blondie!' then I'm probably not talking about you.)

Overall, that was a rough eight hour day. Tons of helpful information but it was ruined by the hour long talk on how to spot cancer recurrence, what the health risks now are for me, and describing the next five years of blood work and tests.

But enough of that garbage, check out this HAIR!

Not the most flattering picture but I'm past the point of giving a damn.

It's growing like crazy! It's super thick and blonde. It's not coming in curly but that's okay. It's HAIR!

So this is the official timeline of these pictures: four months out from my last chemotherapy treatment. It's at least two inches long.

I can put gel in it and spike it up. That's sorta
fun. I'm not sure what to do with gel so I just kinda smear it in there and hope it looks okay.

So at least in the midst of all this after chemotherapy pains, aches, and miseries... the hair is coming back and it's going strong!

I'll keep updating on the hair as it comes. I'm sure by Christmas I'll have a decent hairdo going on and that makes me so happy.

So in short, survivorship clinic managed to be a nice combination of helpful and a pile of poo. So there's that.

But I'm grateful that I even had a survivorship clinic to go to. It seems like my cancer clinic is on the ball when it comes to aftercare. So that's good.

All the perks of big city hospital care aside, I'm really missing my care team back in Wisconsin. It's hard to connect to these people at the clinic here. They're nice and that's great. But they're not the ones that saved me. No one could ever replace that level of gratitude and connection I have for the nurses back in WI.

It's a toss up. Seeing my old clinic might aggravate my post-chemo trauma feelings but it would be nice to be going through this after care treatment with the care team that saw every step of my battle.

Potato, potato.

Is that how that saying goes?

I'll leave you to ponder that.

The time has come: NO more WIGS!

It's been a week and a half since my last post so I figured it was time for an update.

First things first, WOW my hair is growing so fast.

Check this out: 

It's coming in super thick and super blonde! I'm so excited. I went to a big ole FoCo festival with the kiddo this weekend and I went wig-less. I actually haven't been wearing a wig at all this weekend. It's so freeing to not have it on. And talk about way more comfortable. Maybe it's time to say goodbye to the wigs!

It's a struggle because I can't deny that I feel different without my long hair. It's been more of a hardship since I hit remission. I'm not sure why that is. Maybe because my life is slowly going back to normal and this lack of hair is a constant reminder of what I suffered through this spring? 

It's hard to say but I'm sure that's part of it. Now that I feel normal, I want to LOOK normal too. No wigs. No facades at work. It's been a pain in the ass trying to remember what wig I wore to teach in or to my classes. Most of my fellow instructors know so at least that barrier is down but I've kept it to myself otherwise. I think I'll just show up and tell my students I had a bad hair day and got rid of all my hair. Or I rolled around in gum. Or just don't say anything at all. We make a lot of jokes in the classroom so maybe I'll just make a joke of it and that's that. "You'd never guess how crazy my Labor Day weekend was!" Or something. Either way, no more wigs starting officially tomorrow!

It's not like when I was sick that I was happy about being an albino hairless woman (my own analogy for how I felt) but it didn't bother me to the extent it did once I was better. I've found myself, not even joking, staring longingly at old pictures of my hair.

Oh, my hair. How I loved thee. So long and wonderful. It was like a shampoo commercial. 

Talk about identity problems. Way back before I lost my hair, I made an uplifting post about taking back my power by making the initial cut myself. And I did. And it was great. I still mean every word of it.  

And let's get real. I had far more important things to worry about then. Fighting cancer. Suffering from chemo. Parenting with a tumor. (Sounds like a bad self help book) And so on.

Not that I don't have important things going on now. I do. And they're huge. Teaching for the first time (which is going great and I love it,) graduate courses, moving to a new state, unpacking, and everything else. It'd just be nice to have my hair along for the ride.

But it is back, just not what it was before. It's growing super fast. I have the beginnings of a cute pixie cute. Every day it's looking more normal. I look kinda hardcore actually which is so not me but hey, I'll roll with it. I mean check this out- this is the hair exactly 14 weeks post chemotherapy:

Notice that my eyebrows and my eyelashes are completely back to normal. My eyelashes are even more full than they were before which is neat. So starting tomorrow, I'm not wearing wigs anymore. I'm sick of dealing with them and it's time to finally feel back to normal. Even if my hair doesn't look the same it's still MY hair. I'll rock the pixie cut and be proud of it.

Other than hair, recovery is getting there one step at a time. The neuropathy sucks the most and gives me the most trouble. The mornings are the hardest with the neuropathy and the fatigue. I have an appointment with the Survivorship Clinic next Tuesday that they say will help. I'm not even sure what they're going to do- some physical therapy, seeing different doctors, etc. I still have tons of pain and tenderness in the scar where my port was- they might be able to help with that too. The scar is so big and ugly- I honestly wouldn't mind it though if it didn't ache and sting all the time. So strange. 

On a far less optimistic note, I think I'm suffering from cancer survivor P.T.S.D. I already had a feeling that this was the case since my final PET scan made me feel utterly panicked but my last doctor's appointment totally reinforced that. The nurse was just taking my blood pressure and it totally freaked.me.out. Like I wanted to rip my arm out of the cuff and jump out of the window. Kind of like a Looney Tune. All it reminded me of was that one night I spent in the hospital from neutropenic fever when my blood pressure kept dropping, dropping, dropping... And they almost put me on the side of the hospital, as I so eloquently put it, where they send people to die.

(That's seriously not really the case but you know my bad sense of humor has to work its way in. I really don't think they send people there to die.. haha)

That night they (my awesome nurse, Megan specifically) took my blood pressure every 30-60 minutes (something like that, it's a blur now) and pumped me full of fluids. I remember the next day my face was so puffy that I didn't even recognize myself. That was the lowest point of the entire stretch of chemotherapy. The lowest point- I don't think there was anything much worse than those few days in the hospital. That night was one of the most scariest moments for me. 

And all it took to bring me back to that place was just having my blood pressure taken?

Wooooah, buddy. Good thing I don't have to go to the doctor often. Nice lady I talked to at the clinic told me the first year is the hardest. I'm seeing that is the case. I hope over time little things like having my blood pressure taken won't give me the shivers like it does now.

Time, time, time.

Like any traumatic event you just have to make peace with it. To distract yourself, talk about it, meet others with the same worries, whatever it takes. I'm not sure what I need to do yet to heal. Do I need to talk about it? Do I need to just try to forget about it?

Each day I want something different. I think for now, writing about it is the best medicine for me.

My goal for winter break is to start turning this blog into a book. I can't think of a better way to take this traumatic life event and make it into something positive.