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Spinal Tapped – Life as a 20something with MS

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My spring apocalypse started approximately fourteen hours ago.

If I’m going to be poetic and weird I’d say that everything melted, but since we barely had winter, it’s not that applicable.

(Thoreauvians, this one’s for yall)

We drove out of town with ice on the rocks by the side of the road (mysterious, given it was 50 degrees out) and discussed the GPS. If Thoreau wanted to know the distance from Middletown to Mamaroneck (pronounce it correctly), he’d use string. And he’d be accurate. We used the GPS.

It may seem ridiculous to drive 80 miles and ride two trains and run a couple blocks just to listen to someone talk for fifteen minutes, but for us it wasn’t. It was probably the best decision I’ve made so far this year (and 2012 isn’t as new anymore).

I felt like we were transported back, weirdly, to freshmen fall, and that feeling of closeness. After Abelove’s closing remarks, we talked over dinner fairly frankly (because we’re among friends).

I wish when we all said goodbye, it didn’t feel like we were saying goodbye to someone we hadn’t seen in a year and a half. I wish it felt like we all live within a mile of each other and inhabit the same tiny bubble that is Wesleyan. Which we do.

Although at the same time, it’s really only coincidence and the mysteries of WesMaps that brought us all together in the first place so there’s really no inherent reason for us to feel close and god it’s such a weird situation and…

write deliberately, read deliberately, disobey (civilly) when you need to, know that the spring apocalypse will come. Drive home in the dark listening to Oren and Leo debate philosophy/identity/theory of self and be too tired to join in. But know that you are among friends.

 

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GUYZ. Click this. I’m so (prematurely) excited. Injections suck.

Although, I’m a little freaked out by the thought of Copaxone side effects happening at a certain time every night and me not having any control over it…. other than that, this is awesome. :)

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Oh hey blogosphere, I haven’t seen you in a while. Since I’m incredibly busy, I thought I’d post my first exercise from my creative writing class. The prompt was to write testimony (like court testimony). This way you can a) laugh a little hopefully b) think about what your pet would say about you c) not really, because that’s really corny and d) know what’s going on in my brain. Happy reading (I hope) :)

Also, as my friend Kraksy will attest, looking at pictures of guinea pigs makes me unnaturally happy. Here’s a guinea pig for you to smile at before you read (not my guinea pig) (aka the narrator)

Testimony of Cinnamon, a guinea pig

 

My name is Cinnamon, better known as Minnie. I hereby solemnly swear on all that I hold dear (namely, my water bottle, my crawl-tunnel, and my Food Dish which is always plentiful) that I shall now tell nothing but the truth.
It is indeed true that, as a small rodent, I have no long-term memory.
It is also true that thus, I have no memories which could lead to the persecution and/or prosecution of my Owner, she who refills the Food Dish.
It would be out of the bounds of my memory, then, to report that perhaps my Food Dish is not “always plentiful,” as previously stated. I would not recall days when the Food Dish was not refilled.
It would also be impossible for me to state that occasionally, though Owner is supposed to take her medication before she goes to sleep, she often does not sleep until the sun has again risen and thus does not take her medication until that time.
It would be highly improper of me, as I have no recollection of these events, to state that after injecting herself in the leg with the aforementioned medication, Owner just leaves the used syringe sitting on her table. Surely, she would never do something so irresponsible.
It has been told to me, since I would not recall, that I was named Cinnamon due to the fact that I was purchased with another Guinea Pig, who was named Nutmeg, called Meggie. I can assume, through knowledge of Owner’s intelligence, that she did not actually believe us to have been sisters. Having examined photos of the Other Pig, Meggie, I can report that we do not look like sisters at all. Her fur is an entirely different texture.
As I also have no depth perception, it would be hard for me to observe Owner’s actions in a way that would lead to valuable testimony. I have thus never observed Owner stating to her mother “Yes, I will clean my room,” and then proceeding to sit on her floor watching moving images on her keyboard and screen device while eating crunchy puffed grains. I also, of course, speak no English and would not have understood the discourse.
I can also, since I speak no English, not attest to many conversations between Owner and her mother which proceed as follows: the mother says “Clean the Guinea Pig’s cage,” and Owner says “Why? It looks perfectly fine,” while I, Cinnamon, wallow in my own filth. Owner, were I able to understand her, would never say such a thing, nor would she allow me to inhabit an unclean cage.
As Owner is a good Owner and takes care of me well, she would never allow the smaller human, also known as “Devilish Child,” to come into our cage, reach into my smaller cage, and pick me up.
Since she of course would chaperone these visits, were they ever to take place, she would never allow Devilish Child to squish my stomach for many minutes while laughing.
I would not recall, with my limited memory, times when Owner failed to fully protect my cage from outsiders and thus allowed the Medium Sized Mammal to swipe his paw through the bars of my smaller cage. Owner would never allow me to be put in such danger, and if she had, I would not remember.
Based on my limited recollections, which, due to my lack of long-term memory, have all taken place over the past ten minutes, I can assure the court that Owner is a perfectly fit Owner and should be allowed to continue to act as my caretaker.

 

 

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(since classes have started and I have no time, I thought I’d post this weird thing that I wrote at like 5AM at some point over break) (an update post is coming this weekend, I promise!)

I don’t spend a lot of time contemplating whether I exist. “Waiting for Godot” (please pronounce it God-oh when you say it in your head) is my all-time absolute head-over-heels favorite play, and the fundamental question (back to AP English) is “Am I?” but it’s not a question I ask. When my friend Wes was having an existential crisis, he asked me if I ever thought about that stuff. I guess if I have to think about that stuff, I’d say we do exist, because there’s not a good alternative. Nobody’s imagination is that layered (and cruel) that they dreamed up all the stuff that happens in the world (ya know, genocide, AIDS, famine, diabetes, Michele Bachmann…). And I think our lives would be more unpredictable if we were just dreamed up. I don’t know. Like I said, it’s not an avenue of thought that I go down.

However, I am having an existential blog crisis.

Does my blog exist? I’m not really sure. Do any websites exist? Do online personalities exist? Does writing exist if it’s only online and not printed? Do things have to be tangible? Too many questions!

And then with my blog specifically: is it a disease blog if I’m in denial about being diseased?

Yeah, okay, I said it. I’m in some serious denial. Wouldn’t you be? Nobody wants to hear at age eighteen that suddenly their life is on a completely different path that they can’t veer off of.

It makes me think about choosing majors (again). My dad pointed out that what I major in Does. Not. Actually. Matter. Whoa. I could major in whatever, and as long as I got decent grades (ha. hahaha) I could just enroll in the Bryn Mawr pre-med one-year magic program-y-thing and still go to medical school. I could major in dance and art if I felt like it (or, ya know, was good at either of those things). So no matter what I do with this particular decision, I can still ditch that path later.

I keep using walking metaphors (paths, avenues) which is probably because my favorite method of thinking is to just start walking somewhere. Especially in high school when everything, every fight every breakup every text message, seemed so significant and painful and urgent, it felt weird to take public transportation somewhere. I guess sitting on a train felt too stationary. So I walked.

Then, for me, to be stuck on one road seems inconceivable. Couldn’t I just turn right up at that corner and go be healthy? Couldn’t I stop, tie my shoe, window-shop, delay the progressiveness that is MS?

Is it really a disease blog if I refuse to feel diseased?

PS: if you are actually having an existential crisis please do not click here because it’ll just make you sadder about the world.

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How to Write a Marketable BookBased on our research of actual book titles, we’ve got the formula: towering intellectual figure + everyday object.
Thoreau’s Laundry
Flaubert’s Parrot
Heidegger’s Glasses
Wittgenstein’s Poker
Beethoven’s Hair

Easy, right?  Ideally the object should be one the Intellectual Figure handles every day, to enhance intimacy and mystery (the mystery of, Why the fuck would anyone write about this?) Writing the book is not really the problem, it’s the title. So to make it easier on you, the writer-to-be, we’ve created a list:

Darwin’s Ladle
Asimov’s Spatula
Sartre’s Springform Pan
Kant’s Whisk
Nietzsche’s Coffee Mug
Picasso’s Toothbrush
Van Gogh’s Multivitamins
Monet’s Smartwool Socks
Hume’s Waxed Floss
Gaudi’s Q-tip
Beckett’s Fingernail Clippers
Freud’s iPad
Shakespeare’s Doorknob
Joan of Arc’s Digital Camera
Queen Elizabeth’s Wireless Mouse
Tolstoy’s Brita Pitcher

Historical inaccuracy?  Why not speculate on what Joan would have photographed if she could have!  A hipster self-portrait of herself being burned to death after which she tossed the camera away from the fire… Anyway, remember to add hypersexuality, insanity, and death, plus creamed herring for breakfast or whatever weird thing your Intellectual Figure tucks into his or her mouth.  We all have mouths, so we want to know this stuff.  Add odd habits, such as walking by the clocktower every day at noon, or always washing the left underarm first, or roasting roadkill  to save money.   Or building teepees out of sticks and calling them magic caves as the apocalypse arrives (apologies to Von Trier–but we would rather roll up in blankets in a closet and suck down some liquor than sit on an exposed hillside without even a sweater if the world was going to end–though the teepee was more picturesque, we grant).

Whoa–pie break.  I made a chocolate cream pie last night, in a successful effort to get my father to eat carbs.  He ate carbs!  Unalloyed culinary triumph! Now we must have some pie. Anyway, here’s the end of our first mother-daughter-blog-stravaganza, look out for more in the future!
Love,
Kathryn & Cade

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teach me teach me how to taggie

No, but really, I have a serious tag problem. Let me try to explain. My problem is that most of my tags are just inside jokes with myself. To be clear, these are jokes that only exist within my own head. Actually.

I think the purpose of tags (or how I explained them to my mom) (for use on her much more functional blog which you can find here) is to sort of make “topics” (tags) that people can click on in your “tag cloud” to see more posts that deal with that subject. Such as, for normal people, “family” or “recipes” or “new york city” or “roommates.” To contrast, here’s a rundown of some of my own tags that I (and only I) have found clever:

cankles

did i mention cankles?

go watch 10 movies in some air conditioning

hilarity ensued

i don’t want to share solutions with you

jk this isn’t about hipster music

omg its so dark

owls

you have to speak spanish in order to read this post

One thing that you might note about all these “tags” (they don’t really qualify as tags) is that I don’t use them more than once. For some of them (such as “hilarity ensued” or many more that I didn’t list) this is simply because I forget that they exist. That’s right. I forget that I created a tag that (for once) could function for many posts. WHAT. This is awful. I have dug myself into a deep pit of self-referential entirely useless tags. And now I’m writing a painfully meta blog post. Forget MS, this is like the worst thing that’s ever happened to me. #justkiddingthatwastheMS

And there’s a hashtag. Look at what my life has become. I need my mommy.

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I have an unnatural lyrics obsession. I think being obsessed with lyrics is one of those things (like ugg boots, lipgloss, and making out in stairwells) that was only cool in high school. To those two people who voted that I should write about music, you probably didn’t know what you were getting yourself into.

Songs I used to be incredibly obsessed with (and still kind of am):

“Wondering Where the Lions Are” by Bruce Cockburn

“Greener” by Tally Hall

“Speeding Cars” by Imogen Heap

“Helicopters” by Barenaked Ladies

“Black and Gold” by Sam Sparro

“Friends O’ Mine” by Bowling for Soup

“I Will Possess Your Heart” by Death Cab for Cutie

as well as like 60% of the music made in the 90s. Sadly. I know. I have no taste. But I have fun.

Lyrics are so fantastic. I have to resist the hourly urge to post a lyrics facebook status because I am mature now (read: not in high school) and thus I should have my own thoughts or at least I should have better quotes such as those from very intellectual people.

On the topic of intellectual people: look out for a surprising mother-daughter-blog-post-extravaganza coming your way soon.

My dad said that I should write about only what I want to write about. But isn’t blogging a lot about audience? If a blogger blogs alone in a forest and no one is there to read it… then how the eff are they getting wi-fi? #clever

Speaking of readers, I’m a little giddy because my blog topped 1,000 views. Thank you everyone who reads :) you guys make me cyber happy.

 

Anyway, current favorite songs right now are:

1. “Ray Charles” by Chiddy Bang

2. “Criminal” by Fiona Apple

3. “Freaks and Geeks” by Childish Gambino

4. “Oh My God” by Mark Ronson ft. Lily Allen

5. “The First Single” by The Format

6. “Oliver James” by Fleet Foxes

7. “Fly” by Sugar Ray (in case you were wondering where the 90s music was)

8. “Don’t Call Me Whitney, Bobby” by Islands

9. like everything by Tally Hall. Total Tally Hall phase. Look ‘em up.

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…in my election. AKA my poll. One reader voted for me to write more about College so I’m going to write about College. Speaking of which, vote in my poll and YOU TOO could see your chosen topic turned into a rant by me. Er… anyway…

College is kind of a weird limbo state. Let me explain.

You’re working, but you’re not really working.

You can drink as much as you want, and nobody will call you an alcoholic.

You can break laws, but not feel like a criminal.

You’re surrounded by all different kinds of people, but they’re all the same age as you.

You get to “live independently,” but can be arbitrarily ordered to live with someone you’ve never met.

You pay to go there, but the people you’re paying don’t have to do anything nice for you.

See what I mean? Or maybe not, maybe that’s just my weird view. Regardless, I love college (oh hey Asher Roth, you’re right, college is fantastic). College is a nice break from the real world where people indulge you and make you feel like you’re in the real world. I guess it’s a good transition for us late adolescents whose brains haven’t fully developed yet (although mine has already started decaying).

Anyway, I get the feeling that said pro-college-voter-person didn’t just want to hear about the theory of college junk that I’m suddenly spouting. Let’s talk about my college experience.

When I first got to Wes, I wanted to double major in Biology (to indulge my weird new science-geek hobby) and Government (my so-called “true” interest) and be pre-law and go to law school and feel all smart and argue with people so we could all show how smart we were and so on. And then be a public defender (just to show that I wasn’t completely shallow). Then, suddenly, I got MS. Curveballll. The whole Government thing seemed pointless suddenly, like why would I do that? It wouldn’t mean anything to me. Suddenly, I was pre-med.

Backtracking a little bit, all the way back to age 5: this is the year when I found out that the sight of blood made me pass out and have seizures. And not just sight, reading about a bloody thing in a book (like, say, the final scene in the second Harry Potter book) would leave me unconscious (and face-down in a plate of waffles. That’s what I get for reading at the table). This whole passing out at inopportune moments thing continued for the next 13 years. Which meant a lot of concussions, and even a chipped tooth (“you look like you got in a fight with the floor. And the floor won.”-my mother, circa 8th grade).

So, as you can imagine, when former teachers run into my mom at the grocery store and ask about me (I’m so popular) (jkjk) and hear that I’m pre-med, they’re pretty shocked. Hey, me too. I watched a frog heart continue to beat in a beaker of saline last year and stayed upright, mind over matter baby.

Anyway, back to the college thing. The problem I’m having now is that I’m still a little bit attached to Government. The Government department at Wes is so popular that it’s pretty impossible to get into courses, and yet somehow I am enrolled in two Gov courses next semester. Whaaaat. I want to take them so badly. They both sound fantastic. But, here’s the catch. To be a double major in Gov and Bio, you need a GPA that I just don’t have. And since pretty much everyone at Wes double majors (we don’t have minors), I’m feeling some serious pressure to ditch my Gov love and find another major to do. English looks like it’ll work, but to be an English major I’ll have to drop at least one of those precious Gov classes. What to do?? I’m very torn.

Thoughts? Suggestions? Should I just take 6.5 credits next semester and hope death will at least be painless?

Also, as my friend Elizabeth and my mom have both noted, I should really link you guys over to the Office of Admissions blog that I write for. clicky clicky. Coolest job ever.

ALSO to the voter who voted that I should write about “Pandas” (and who is not my 15 year old brother, who I suspected), here is a panda for you:

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I don’t actually have anything to say about the panda. But I keep promises. Hope you like your panda, anonymous panda lover.

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Under the dorm complex where I lived freshmen year, there are tunnels (that supposedly used to connect the entire campus instead of just the three surrounding dorms) which now are covered in graffiti. Well, actually, I don’t know if they were covered with graffiti back when they were in use too. The laundry room is down there, which I think is the only reason we were allowed to go down. Sometimes another door to another tunnel had been left unlocked and we could go exploring.

We found one room last year that just had trays and trays of rocks, labeled, stacked sloppily. We found a room full of old books. We found, on the wall, a long breakup speech written in sharpie. I doubt the person who it was intended for ever found it. And if they had, how would they have known it was for them?   It wasn’t very specific

In case you can’t tell, I’m a little bit sad today. I took a red-eye back home from Seattle last night/this morning and I wish I hadn’t. I guess I don’t talk about it much, but being in a long-distance relationship is hard. We’ve been making it work (some times more so than others) for 2.5 years now though, so I guess we’re pretty pro?

Anyway, lately I’ve been thinking a lot about time. The picture above is from the aforementioned tunnels, and it made me think about what I was saying before about staying up late, all night even, for no reason.

Hours have started going faster for me, I think. Hours spent in boring lectures or MRI machines or cramped family roadtrips (dear parents, get a minivan…) seem to pass much faster than they did before. Maybe it’s because as we grow older, an hour becomes a smaller and smaller fraction of our lives? That’s maybe a bit too poetic.

My doctor says that there is a 75% chance that I will still be walking in 10 years. I think he’s kind of ignoring (on purpose) that 25% chance of me being in a wheelchair at age 28. At least I’ll be done with medical school by then, but it still seems pretty young. And I don’t get how a 30% medication (what I wrote about in my last post) is supposed to sound like a giant percentage, but 25% is supposed to sound small.

When I’m just alone at night I have to think about things like this instead of getting to sit up late talking with my boyfriend about anything and everything. I remember when we first met, we walked around Barcelona for several hours just talking and drinking an incredibly disgusting kind of orange juice. Those hours felt pretty short too. Hey love, this one’s for you. Miss you.

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Statistics. Now there’s a class I haven’t taken yet, and I’m not sure if I’ll get a chance to. I wonder if Wesleyan offers some sort of class on the significance of statistics, though. Or if there is such a class somewhere. Kacie likes to say “73% of statistics are made up on the spot,” which is on too high a level for my eight year old brother to figure out.

Most MS drugs say that they will lessen the chance you will have a relapse by 30%.

Doctors seem very concerned about me and my medications. Will I keep taking them? Do I understand how important they are? Have I been taking them? Will I stay on them? Of course I will, of course. To me, this is not a question. If a doctor (well, a good doctor) prescribes me medication and there seems to be a good reason for me to take that medication, I will take it. Even if I don’t quite see the reasoning, I still take the meds. Apparently that’s not true for a lot of people, which is very alien to me. Why wouldn’t you take your meds?

Reasons they could give (that I can think of):

Well, my MS isn’t causing problems now. So why should I have to take meds now?

They’re expensive.

I don’t like needles, and the oral meds are too dangerous.

I’m not sure I have MS (aka denial).

30% isn’t enough.

It’s that last one that really bothers me. 30% isn’t enough? I understand that we all want 0 relapses, aka 100% less, but that’s not currently what’s being offered. But what does 30% really mean?

If weather.com tells me there’s a 30% chance of rain, I probably won’t wear my rain boots (they’re too heavy) or wear a raincoat (too dorky) but I might take my umbrella, because it’s easy.

If I told you that you could make 30% more money next year, or have 30% more sex, you’d pay attention.

If you could score 30% higher on the SAT or have a 30% higher GPA, you would care.

What makes 30% significant sometimes, but not other times?

 

Anyway, this post is in response to poll responses so far, which said that I should write more about MS (duh, should have been doing that already). This is more about me musing than about MS I guess, sigh. And to Cinda, who said I should write about a creative writing class, I happen to be taking creative writing next semester, so you’re in luck :)

Also, just a side note, my blog had 96 (!!!) views yesterday. Not sure how that happened, but to all 96 of you, hope you enjoyed it and let me know what I can do better :) so cool!!!

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