Worry becomes your constant companion when you are a sick person. I mean, obviously it does; and not just in the “will I die in my sleep, leaving my child motherless?” kind of way, but in the why did this happen to me? Is there some sort of greater plan for why I’m sick? In lonely moments, and there’s lots of them when you are resting, napping, chilling, or being forced to take it easy, you can easily catch yourself getting very meta, or simply trying to decipher the code of the universe. These things happen when you’ve cycled through Friends one too many times, or run out of Lifetime movies on Netflix.
I’m not really the kind of person who thinks the grand design behind the universe was that I was destined to become sick, so that one day I would become well, and lead some grand charge of Chiari Awareness, although, don’t get me wrong, I hope that you are all really really aware of it now. I don’t think that the universe wanted me to get sick, get better, and fundraise to bring MRIs to underprivileged children in the Sudan, or some other poor country.
Is the Sudan a country? A region? My lack of geographical knowledge is showing. I’m uninformed about things like “geography” (Disclaimer: I’m smart as fuck about lots of other shit, and I firmly believe we are all entitled to a dummy weakness; this is mine). More power to the person whose mission it is to get sick, get better, and do the aforementioned things (note: see, I have good vocabulary; I say shit like “aforementioned” in everyday convo); but I don’t think it’s my mission.
What I really do, in these moments of doubt and worry, is fret that instead of having a mission, getting sick, especially with Chiari, was really just natural selection, and I’m just refusing to recognize it. I wonder if lots of people with crippling, or even terminal illnesses wonder this before they die, if this was nature’s way of saying, “hey, we’re trying to thin the herd here; can you please just let nature take its course?!” When you get weird, relatively rare conditions, that take relatively extreme measures to correct, the mind can wander to this zone.
It tends to stay in this area when you spend too much time in chat rooms and online support groups for people with your illness. I’m not sure what support groups for other illnesses are like, but support groups for Chiari are pretty much like the way I would imagine it would be to survive in a prison camp, run by rival sororities.
There are countless groups, but they have one thing in common: they are dominated by women, and they all boil down to cattiness and back-biting. Even the groups geared toward support and not toward spreading knowledge or answering questions eventually devolve into posts about this girl or that girl, on this group or that group, and how she’s so awful, and how it’s unbelievable that she said that on that other group!
But, it isn’t the physical, by-proxy connection, via illness, to perpetual high-school behavior, from people as old as into their sixties (or older, in some cases), that has me worried that I was, like them, perhaps meant to be thinned from the proverbial herd; because let me tell you, I don’t think the advancement of society would suffer too much, at their loss; it’s something more specific. It’s not the she said/she said posts. Really, it’s worse.
For example, the other day, a woman posted a question, in earnest, about whether or not Chiari was linked to being psychic, or having other metaphysical powers. I mean, don’t worry, she prefaced it with wanting to make she wasn’t offending anyone’s religious beliefs, because of God and, you know, stuff. But, her general question was curiosity if our malformed skull (not that she recognized that is what is wrong with us, as she thought it was our interesting brains that cause Chiari), caused some kind of metaphysical link, or power surge, or connection with the universe that allowed us extra-sensory perceptive powers.
Okay, so that’s one whack-a-doodle. I can get past that she’s part of my people. But, that’s not the worst part. I lost track of the likes and comments she generated along the lines of “me too!” And, how many people shared their stories with comments starting with things like, “I thought it was just me!” Yep, my people, so many of them think this is legit. So, how can I not think that maybe I’m supposed to just lay down and die with this, because, guess what? I have the same thing that these crazy coo-coo-banana-pants people have.
Don’t get me wrong, there is no shortage of people who post ridiculous questions, trying to connect Chiari to pretty much everything in their bodies, or to anything going in their lives. “Oh my god! My period was 19 minutes late! Do u guys think it is Chiari related?” 72 comments and 398 likes (all comments of agreement and encouragement). “Sometimes I sweat a lot when it’s really hot. Do you guys get hot easily?” (something like this will generate hundreds of comments, including photos of things like heat-rash).
My biggest complaint, and concern about being linked with this community has been, am I them, by default. I’ve always prided myself on being educated, researching my decisions, reading, being able to communicate; well, essentially, not being a moron. Then, I read a post that asked whether decompression surgery was performed by a neurosurgeon, a brain surgeon or an orthopedic surgeon. This was followed up by the question of whether or not a brain surgeon and a neurosurgeon were the same type of doctor.
I know it takes all types of people to make the world go ‘round: Einstein and morons; ditch-diggers and CEOs; doctors and the guy who dumps the puke buckets down the drain. We need everyone. But, when I got sick, there was literally not enough information on the planet for me to get my hands on to read. If I didn’t understand a word, I looked it up. If I didn’t understand three words in a sentence, I looked them all up. I wrote them down, I underlined; I highlighted. I took notes. I have pages and pages of notes and questions. I studied normal MRIs, abnormal MRIs, anatomy images. Everything.
If you are considering something as serious as letting someone cut a hole in your skull and get a scalpel anywhere near your brain, your mother-fucking BRAIN for the love of cats and dogs, maybe you could take the time to, at the very least, look up the word neurosurgeon? I literally imagine this woman turning on her computer machine, firing up Google, and typing in “brain doctor,” and hoping for a hit. Then, she realizes she wants a brain doctor that does surgery, so typing in “brain doctor surgery,” or “brain doctor cutting.”
Another awesome question: in reference to the pineal gland, the original poster wanted to know why it was noted “present” in her MRI, and didn’t know what it did, or what it was for, and was understandably terrified that she was dying (clearly the best place to go is a group, instead of a book, or at the very least WebMD). On a side note, clearly "present," as note for anything, is generally not something to be freaked out about. I don't usually freak out when a doctor notes "present" about my right and left leg. I would freak if he noted, "absent," however.
Thankfully, she has people who can say things like this in response: “Have look little bit on internet…it play a roll in you biological cirkel, sleep/awake patron……..It sitt in your central part of your brain…. How accurate this information is I don’t know…. Something I found on internet………”
I can forgive the egregious misuse of ellipses, because how often did your teachers stress that lesson in school? (Except, how fucking hard is it? Three! THREE! Only ever three! And no extra goddamn spaces at random intervals! Okay, it’s out of my system).
I’m an English teacher, so I can get hung up on grammar, and I know that it’s sometimes unfair to judge a person’s education level, knowledge or ability to communicate too harshly on spelling and such; however, when this is the only way you are presenting yourself to the world, let’s just break this one down, as like I said, these ARE my people. And, since many, if not most of us, in these groups have had brain surgery, so we often have some communication barriers, so I cut them even more slack on grammar; but, you have to draw the line somewhere. So, ahem, we'll just skip right past that "roll," thing.
First of all, what the fuck is a cirkel? My son is eight, and Autistic; he’s been able to spell the word “circle,” since he was 3. I know that hard “C” sound can be tricky, but let’s get our shit together, folks. Secondly, while she’s trying hard to explain the sleep/awake cycle, I’d like to meet the patron that controls mine, because he’s doing a fucked up job. It’s well documented that Chiari messes with your sleep and causes insomnia issues, as does chronic pain. Although, I’m pretty sure, she’s trying to say “pattern.”
I’ve been prescribed several things, over the course of my illness to help with Chiari/Chronic Pain insomnia, including Valium. Anyone who has ever had the relatively rare side effect of Valium-induced nightmares or night terrors will tell you how non-relaxing this "relaxation" drug can be. Good God! Ask my husband sometime about how fun it is to be slapped awake by a wife having a night-terror. Anyway, if anyone meets my patron, say at a gathering of sleep/awake cirkel patrons, can you tell him that he’s doing a terrible job at regulating mine?
And finally, I’d like to congratulate her on re-negotiating the ending of the word, “sit.” It looks nicer with two “t’s,” really. A hard “t” ending emphasizes the finality of the word; when one sits, it’s a final action, especially for a Chiari patient. Usually, when we sit, we really do “sitt” for the day; sometimes, we sitttttt for the day. So, excellent emphasis; perhaps she meant this spelling.
These are my people: 20-60-year-old high school students, who spend 80% of their time being catty to one another, gossiping and creating mean-spirted memes about one another; and the other 20% of the time asking and answering asinine questions that they could Google. These are people who think Chiari has made them more psychic, who don’t know what neurosurgeons do, and whose spelling I’ve generally corrected for your benefit.
How can I not feel like I’m not missing some glaring defect in my personality that means that I should be herd-thinned too? Don’t get me wrong, everyone deserves to live a full and happy life. Everyone. I’m not advocating that these are awful people, and just because they aren’t exactly like me, that they are wrong and deserve to die. I’m literally wondering what’s wrong with me? So, what am I missing about myself?
See, being sick makes you self-examine. So, what have I learned? Well, not much new that I didn’t know before. I’m abrupt, abrasive and I can easily offend people, accidentally (or, on purpose!). I have strong opinions, and I have to use great effort to restrain myself, in order to keep and maintain casual relationships. But, I already knew this. I also learned that when something is important to me, I’ll work my ass off for it. Again, nothing new. And, I learned that when I don’t care about something, or someone, it’ll be pretty fucking obvious, especially if someone pushes me on it.
I did learn that, in contrast to my people, I appear capable of self-reflection, growth and change. When you are involved in these groups, it’s pretty easy to get caught up in the drama, no matter how hard you try not to. A simple query about something as simple as asking an opinion about a doctor can lead to someone calling you a “fucking whore,” or telling you that they wish you’d die in pain. I’m not kidding. I’ve seen these conversations for myself.
No, I’ve never said these things. But, I’ve said not nice things once or twice (never that bad). But, I’ve learned that I can keep my cool when I’m bullied, despite my explosive nature, something that the others can’t do. And, I’ve learned that when I can’t, I’m capable of apologizing to people I find truly abhorrent.
Even more, I’ve learned that I can not only apologize, but work on diplomacy, a skill I didn’t know I had. I’ve worked hard to cultivate relationships within these groups with people I truly think are probably the worst people I’ve ever encountered, in my entire life. Cruel, horrible people, who seek out others to pick on them, degrade them and insult them. These people pretend their mission is to educate “newbies” about their condition, but they are aggressive, cruel and frightening to these very same “newbies,” scaring them out of groups and making their mission a moot point.
Of course, when these "newbies" are scared off, the cruel ones essentially celebrate, patting themselves on the back for, at least, spreading proper information. They figure that, at least, the newbie ran off scared with good info, and that maybe it will sink in, before they do serious damage with who they deem the wrong surgeon, or with a bad doctor. They pick over the "newbie's" bones, by cattily making fun of his/her questions or comments for a few hours, maybe days, and then they are like a ghost that was never there.
I’ve discovered that I can work behind-the-scenes magic to calm some of these fiery personalities down and actually do some good; I’ve helped some people get some valuable information about their condition. I’ve helped cool some fights down because some, but not all, of these people trust me.
I wonder now if that’s been my mission, to befriend monsters, in order protect the weak? The only way to be with them is to be one of them, despite how disgusting they can be. If that’s my mission, I need a super-hero name. Chiari-Crusader? I’ll work on it, because that sucks.
 These are not actual posts, but they are certainly examples of exaggerated ones
 I say this with all sincerity too. I’m not a monster. A woman I know, who I hold in the highest of esteem, has struggled with language the entire time I’ve known her. Why? Not because she lacks intelligence; no, far from it. She’s probably one of the smartest, hardest working women I’ve ever met. She immigrated from China, as an adult, to start a very successful fashion company. Driven, successful and now speaking a complex language that is not her own, she makes mistakes with the written word. But even she would not make mistakes like this, of both the poster and the responder, that indicate a complete lack of forethought and intelligence. She’d have enough sense to research better, and has better grasp of the language. Oh, and she probably realizes that when your computer does that weird red, squiggly, underline thingie, it means you have spelled something wrong.