Under Pressure

Greetings followers and friends. Sorry this hasn't been updated in a week, but I've either been sick (can't seem to shake the cough from my chicken pox and have been running a fever off and on) or busy working on my present for the wedding I'm going to later this month. Anyways, on to the blog.

September is Intracranial Hypertension awareness month, and so I though it was appropriate to talk about Idiopathic Intracranial Hypertension (IIH) today. Most people have never heard of IIH, and honestly I could have gone the rest of my life without hearing about it either. IIH is a "rare" neurological disease / disorder which effects 1 in 100,000 people with no known overall cause and no known cure. There may be things that can "trigger" IIH, including drugs (such as tetracycline, lithium, Vitamin A-derived oral acne medications, and steroids, especially during withdrawal), growth hormone treatments, excessive ingestion of Vitamin A, sleep apnea and certain systemic diseases such as lupus, leukemia, kidney failure (uremia), meningitis, dural venous sinus thrombosis, and Lyme Disease, but people can get it from no known cause at all. Previously it was thought that only overweight women between 20 and 45 could get this disease, but more recently it has been found that anyone can get it, and I am familiar with men, children, and "skinny" people with this disease. 


An old name for IIH is Pseudotumor cerebri (PTC), or "false brain tumor." While PTC is no longer considered an accurate name for IIH because it is too "mild", personally I feel it expresses very well what it feels like to have IIH, because it is exactly like having a brain tumor - headaches, dizziness, hearing loss, visual problems that can evolve into eventual blindness, neurological deficits - and, let's face it, people understand a whole lot better when you say you have a brain tumor than when you list your disease as some long word that no one (including most doctors) have never even heard of.

So what is IIH? The best technical definition can be found on the only research organization studying IIH in the world, the Intracranial Hypertension Research Foundation (IHRF):


"Intracranial hypertension literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high. “Intracranial” means “within the skull.” “Hypertension” means “high fluid pressure.” To understand how this happens, it’s helpful to look at the basic anatomy of the brain and skull, as well as the process in which cerebrospinal fluid is created and absorbed.

Cerebrospinal fluid is one of three major components inside the skull; the other two are the blood supply (the arteries and veins known as the vasculature) that the brain requires to function and the brain itself. Under normal circumstances, these components work together in a delicate balance. A pressure and volume relationship exists between CSF, the brain and the vasculature. But since the skull is made of bone and cannot expand, an increase in the volume of any one component is at the expense of the other two components. For example, if the brain swells and becomes enlarged, it simultaneously compresses blood vessels, causing the sub-arachnoid space to fill with more spinal fluid. This results in an increase in intracranial pressure (i.e. cerebrospinal fluid pressure), as well as a decrease in blood flow.

CSF has several important functions. It cushions the brain within the skull, transports nutrients to brain tissue and carries waste away. CSF is produced at a site within the brain called the choroid plexus, which generates about 400-500 ml. (one pint) of the fluid each day or approximately 0.3 cc per minute. (The total volume of CSF in the skull at any given time is around 140 ml. That means the body produces, absorbs and replenishes the total volume of CSF about 3-4 times daily.)

Schematic Drawing of Cerebrospinal Fluid Circulation.

Elevated CSF pressure is transmitted around the brain and along the optic nerve (sub-arachnoid space) producing papilledema.

Cerebrospinal fluid flows from the choroid plexus through the brain’s four, interconnecting ventricles before finally entering the sub-arachnoid space, which surrounds the brain and spinal cord. The fluid then flows over the brain and spinal cord and is eventually absorbed into the venous blood system through tiny, one-way channels called arachnoid granulations or villi. 

When this continuous cycle of CSF production, circulation and absorption functions normally, it regulates the volume of CSF in the skull and the fluid pressure remains at a constant level. In other words, the CSF production rate remains equal to the CSF absorption rate. 

But when the body cannot effectively absorb or drain CSF, intracranial pressure increases within the fixed space of the skull. And since the brain and the vasculature can only be compressed so far, intracranial pressure must rise. Intracranial hypertension in adults is generally defined as intracranial pressure that reaches 250mmH2O or above."

That's a great technical description of the disease, but I have a better definition of it: IIH is a pain in the ass. Or the head, more accurately.

I don't know how I got IIH, I've been on Lithium and steroids, I've had meningitis twice and Lyme Disease once, and I have another disease that can contribute to it: Poly-cystic Ovary Syndrome (PCOS). As far as I can tell though, my trigger was my last bout of meningitis which I suffered exactly a year ago. I never got better from my meningitis; several months, three LPs (spinal taps), and two blood patches (to stop leaking after the spinal taps) later, my right ear kept ringing, I still felt tired, I was taking Excedrin Migraine like candy, and the slightest movement left me very dizzy. I'd had dizzy spells before (ironically enough, when I was on lithium I used to get dizzy, have strange tingling going up and down my spine, and lose my peripheral vision fairly often), so it was nothing for me to drive very dizzy, but I felt so sick that I knew it wasn't a good idea to drive to work through the heavy snow that marked the last few days of January here in Tennessee. Finally, on the 1st of February, my neck started seizing up and I knew something was very wrong. I drove myself to my GP, and his nurse practitioner did some neurological tests (which I failed miserably), decided I had meningitis again and sent me back to the ER.

For some reason, the anesthesiologist who did my LP decided to test my spinal pressure for the first time, and I knew something was very wrong when he let out a whistle and told me that my pressure was one of the highest he had ever seen, 380mmH2O, or 38 (later on I found out that for IIH that wasn't as bad as it could be, one of my IH friends routinely hits 55). The funniest thing was, after he did the tap and drained me down to a "normal" pressure, I felt much better. My dizziness went away, my head stopped hurting, and the buzzing in my ear got quieter. That's when they broke it to me: I had IIH.

Like most people, I had no idea what IIH was, so when I was done with my few days' rest to make sure I didn't leak again (thankfully I didn't this time), I logged onto the internet to find out what I could. It all made so much sense: this was everything I had been going through for months. If only everything was so simple as that research.

Like I said, most doctors don't have any idea what IIH is. After I was put on the first of the three medicines that I've been on so far, the swelling in my optic nerves went down, but I still felt so sick that I ended up having to change neurologists because the first one I was going to told me that everything was in my head (some of the problems that were "in my head" ended up with me getting surgery because I ended up having nerve damage in my arm that had to be reversed, but hey, I didn't have any idea what I was talking about). I like my new neurologist, but he keeps insisting that even though I'm still having terrible headaches, my ear can't shut up, I'm horribly dizzy at times, and my vision either gets spotty or cloudy, that I can't still have IIH because when he looks in my eyes he can't see any swollen optic nerves (although that doesn't mean much to me, as I went to an eye doctor literally a week before I was diagnosed, and he never saw my swollen optic nerves because the way my eyes are shaped you can only see them when my pupils are dilated).

So this is my life right now, I can't work, I can't bend over without getting dizzy, and all the needles shoved in my back have caused nerve damage and muscle damage, which means I'm constantly in pain. Then, a couple of weeks ago I was at the neurologist when I got really dizzy and almost past out in the bathroom, and he decided the pressure on my brain is effecting my heart...

The Changeling Child

If anyone is wondering why there is a big picture of candles at the top of today's blog, yesterday afternoon shots were fired around the site of the new Islamic Center of Murfreesboro while members and reporters were looking over the destruction from the weekend's arson. The group I belong to, Middle Tennesseans for Religious Freedom is having a candlelight vigil at the courthouse in town tonight in protest of these terrorist acts. Since I'm still contagious from my chicken pox (out of quarantine tomorrow though, happy day), I can't go, so I'm making a suggestion that anyone who believes in religious freedom (including freedom from religion) and thinks that terrorist acts should not be acceptable against any religion should change their profile pictures on Facebook to that of a candle.

That being said, here comes today's blog:

First off, thanks to my cousin Gabriel for talking people into reading this; it makes me feel all warm and squishy. Or that could also be the face it's way too hot in Tennessee in August and that warm, squishy feeling is me starting to melt. All things are possible.

One thing about having chicken pox is that the antihistamine I've been taking three times a day to stop itching is making me dream like crazy. I'm not normally a person who dreams a whole lot, but I've noticed before when I take antihistamines I have some pretty wild dreams. (Now that I think about it, probably the only good thing about being too sick to work the last several months is that my skin allergies haven't bothered me, since I haven't been around cardboard and metal polish, and I don't have to worry about people brushing against me with weird soaps, detergents, or lotions. It's so weird being allergic to cardboard.) So, tangent over and back on track, the other night I had a really great dream that inspired me to work on a new story, which in and of its self is rather inconvenient considering how many other stories I have to work on at the moment, especially my "baby" which is languishing mid-chapter page 160-something on my flash drive because I can't figure out how three people cross a tundra (it's more complicated than that, but said subject is a whole blog on its own).

Most authors whose work I enjoy usually say something about doing all your research and massive outlines before starting to write the "meat" of a book, but I've always hated outlining, and I'm more of a research-as-I-go type person (exception being character names... but that's something else that requires it's own blog). More important than any of that, I think, is deciding what questions you want to address in a story. "Good" books ask one question, usually a what-if (i.e. what if animals rode in a dump truck - don't laugh, that was my favorite book when I was two), which tends to be simplistic and easily answered by the text with no outside though processes required. "Better" books have the what-if, some moral / religious / ethical questions, and a what-you-should-think explanation on the second set of questions, usually the author's opinion, though "mediocre" and "better" books are often decided by whether said author is going to try and beat their opinion home with a baseball bat. Religious fiction - pick your religion, I like Wiccan / Pagan fantasy and certain Christian sci-fi - tends to be the worst; there are times when I feel like shouting at the author "okay, point made, your religion is perfect and you're wonderful because you believe in it, I'm slime because I don't. Can we get back to the story now?"

The best books, however, are those that not only present questions, but also present the questions in such a way that the reader afterward is questioning them self. When finished reading, you look at the world with new eyes, wondering about your own life, about the person next to you, about justice, about faith, about eternity...

The best books change us from the inside out.

Now, I'm not the great American novelist, but I know what I like, and I know what moves me, so usually the stories I'm working on are inspired by the questions which are bothering me the most when working on said story. My "baby" has many questions fueling it - does memory determine reality? What is fate; does it exist or is it shaped by choice? Is it better to do evil honestly or to cloak it in the name of religion? Should a person live with the ones they love always in danger, or die so those they love are safe - and thus have no time to be loved at all? I'm still sorting out my newest story, but one question that I know I have to include in it hit me rather hard: what does it mean to be human, and how is one determined to be human?

My muse / best friend / non-biological twin (we're not related but our birthdays are so close together we might as well be twins) Chris and I had this discussion last night (pity him greatly, he's the one who usually gets to listen to me rant and rage when what I'm writing is not going the way I want it to), and his opinion is that it is choice and the availability of choice that determines whether or not someone is human. Let me explain this better, the premise I am moving from is that one of the characters is a "changeling", or non-human who replaced a human infant. Their DNA is identical to human, they were raised as human, they don't remember ever being anything but human. Said character is decidedly, however, not human. Chris believes that as said character has the option at any point to choose to no longer be human, but rather revert to their non-human state, they are not human. At the same time, he also considers that any human who as the ability to change forms (his example was a man with a ring of invisibility) is also no longer human, as a regular human has no ability to choose what form they take.

While he makes a good point, I'm just not sure how much I agree with it. Anyone who has ever seen someone who has undergone far too much plastic surgery knows that just because you are born looking one way doesn't mean you will die in the same form. So since people who undergo plastic surgery choose to change their appearance, are they no longer human? What about people with tattoos, or piercings, or ritual scars as used by some tribes in various countries. Humans are not born with tattoos, piercings, or ritual scars, but am I less human because I have pierced ears, or because I had to have a tendon in my knee removed because of a birth defect? I chose both things, the knee surgery especially not something that most humans have to choose to do, but I don't feel it makes me any less human.

So, then, what is it that makes me human? It's not an ability to think, any animal that decides to chase after prey instead of staying inside when it rains can think. Language? Apes (most notably Koko the gorilla) are fully capable of communicating with humans when taught sign language that humans can understand (which leads me to the conclusion that it is incorrect to think of animals as being unable to speak, but better to think of humans as being unable to hear). Koko has also been recorded mourning for another gorilla after it died, even putting flowers on the corpse, so feeling emotion is not a purely human ability either. One of my mom's dogs is so loyal that at times she is neurotic; when my mom and her husband went to Hawaii for two weeks last year, Breeze became so upset that she almost chewed her foot off, and the vet was threatening to give her Prozac unless she calmed down. After my dog Norlis died, Breeze became so afraid that anyone who left would never come back that when she could tell someone was leaving, she would shake so badly that the chair she was in moved. Loyalty, connection, a sense of family; watching the dogs that I've been around for the last 14 years, I'm fairly certain at times they love deeper and longer than most people I know. Insects can build, and orangutans use tools, so it isn't either of those.

This brings me to an even bigger question, one that I think is more important out of a book than in it: if it's this hard to decide what it is to be human, why is it to easy to say one human is not as good as another? Why is on religion better than the next, why is one race superior, why is one sexual preference preferable? I am human, but I don't know what it is that makes me human. All I know is that I am no better a human than anyone else. But then again maybe I'm not human, maybe my choices have just made me a changeling child.

I will survive

Well, yesterday is over and, thank heavens, today is better. The hate-mongering anti-ICM site of Facebook has been taken down after they were contacted by a lawyer concerning the threats made towards the people in MTRF (Middle Tennesseans for Religious Freedom), those of us in MTRF have all put up posts about how we won't be intimidated and won't return hate for hate, and better than that someone who used to spread Islamaphobia has come to us all, begging for forgiveness and saying she was wrong. She just became my personal hero of the day.

My chest is still hurting from being so angry yesterday though, and now I'm trying to decide if it's residual anger, tightness from the cough I have from my bout of chicken pox (yay for me, at 25 having chicken pox for the 2nd or 3rd time depending on which family member you talk to, I don't remember having them before at all), or if it's the same problem with my heart that my neurologist noted the last time I was there. Not that it really matters, any of the above it hurts.

But chicken pox, heart problems, and brain diseases aside, I find myself looking at today and wondering exactly what the future brings, thinking about people and the passions that drive them, and knowing no matter what, I will survive.

I'm not saying I'm going to live forever, let's not be stupid here, but what matters is the ideas that make me up will never go away. Any idea, no matter how ignorant or how inspired, must be shared in order for it to survive. Call it intellectual Darwinism if you will, those ideas that touch the most are the ones that make it to the next generation, and, on occasion, the generation after that. So as long as my ideas are being shared, as long as there are people who will remember what I said, even if it's stupid, as long as there are people who feel the way I do about doing what is right in the face of the many who tell you to do what is wrong, I will survive.

My background is in Anthropology, the study of humans and human culture, a field based almost entirely on Darwinian ideas; I've often said that the only place that Darwinism and religion overlap (other than the idea that we are human and we are here, now) is where the Bible says "be fruitful and multiply", and the Survival of the Fittest says that the being with the best evolved advantage of surviving a certain climate is the one who will share the most DNA via its descendants, and thus increase the evolution of the species. In other words, the only purpose of life is to create more life.

Now, will my medical problems, it's almost impossible for me to have kids, and what's more, I'm not sure I want kids. Set aside the fact that I'm someone who enjoys being on their own (with the exclusion of a few people) and I want time for my thoughts to solidify in my mind (time that usually involves silence or relative quite), the fact of the matter is I'm pretty sure I'm someone who shouldn't have children. All things being equal (which of course they aren't), unless there is a miracle in curing what ails me, I wouldn't be a good mother. Some days I'm angry for no reason, some days I can barely move because of how much it hurts to breathe; there are days that I feel fine, and days I can't get out of bed at all. Beyond the fact that most, if not all, of what I have is genetic in origin and very likely to be passed down (which is entirely unacceptable in my mind), no kid deserves a mother who can only be a mother part of the time.

And, all respect to Darwin and DNA, the fact of the matter is how much of our DNA actually decides who we are? Okay, so mine has decided I'm going to suffer quite a bit apparently, but when did DNA decide that even when I can barely walk straight from dizziness and my heart feels like a giant stone trying to shove its way through my chest, that I will still be worried about things like religious freedom and science fiction stories? Does DNA decide who becomes a Hitler, or who becomes a Gandhi? Does DNA decide that my favorite color will be purple, or that I think the changing of the seasons, leaves gold and red on the hillsides south of town are the most beautiful thing I've ever seen?

Experience determines who we are more than DNA, experience and the ideas that we gather and form as experience refines a person from who they once were to who they are and who they can be. So while I probably won't ever leave my genetic imprint on the world, at least I can hope, as long as I'm typing things like this, talking to others, and putting my ideas where people can see them, that I will survive.

I have a dream...

Today is the 47th anniversary of the "I Have a Dream" speach. The Civil Rights movment of Dr. King's time was marked by terrorism commited against people just because of the color of their skin.

Today, here in the small Tennessee town where I live, someone went to the lot where the new Islamic Center of Murfreesboro, doused the equipment there in gasoline, and lit it on fire.

Times change, apparently bigotry doesn't.

What's interesting if you read the original text of "I Have a Dream", Dr. King makes a statement that "if America is to be a great nation, this must become true... Let freedom ring from the mighty mountains of New York... Let freedom ring from Lookout Mountain of Tennessee...  From every mountainside, let freedom ring. And when this happens, when we allow freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God's children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual: Free at last! Free at last! Thank God Almighty, we are free at last!"

Let's add to that list shall we? Let's speed up the day when all people - no matter the color of their skin, no matter who they worship or don't worship, no matter who they love - same sex, different sex, no matter their politics, anyone who wants to live their life the way they like it without harming anyone else - can stand together in brotherhood, not even aware of what makes us different. Just aware of what makes us the same.

I have a dream that one day no one will have to hide who they are because someone else thinks what they believe is more important than that person's freedom to be alive.

I have a dream that one day I will not read about another person comming home to find a swatstika burned in their yard, racist slurs carved on their door, or a noose hanging from their tree

I have a dream one day there will be no more bigotry, no matter the cause, no matter the cost.

I have a dream that one day no one will ever have to dream about freedom, because, finally, we will all be free at last.