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“Spinal Tapped – Life as a 20something with MS”

Tag Archives: musings

February 15, 2012 Getting Sillier

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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January 19, 2012 The Mother-Daughter BlogStravaganza

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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January 13, 2012 [insert catchy song lyric here]

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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January 11, 2012 Literally Every Vote Counts

…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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January 11, 2012 Naranja y Nada

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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January 5, 2012 30%

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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January 2, 2012 Fear

Self-analysis is so weird. I was looking through my posts here, and I noticed that the ones I have saved as drafts are the ones where I’m being more serious. I think I kind of have a fear of being honest/serious/emotional/a real person online that I don’t have (as much) in real life. I guess because in real life you can’t edit yourself all the time, and if you did you’d be so stressed (more stressed than I am already) so it’s not really worth it. For me at least.

My mom recently mentioned that she thinks the word I use most in my texts to her is “stress.” I don’t really like that. I went through high school with all this drive and this “exuberance is beauty” mentality and I think now my mentality is more “stressed.” How are you? I’m stressed. Can’t talk right now, stressing about X.

Since this will be the first post of the new year (as long as the world doesn’t end), I thought I’d make it very honest.

And I’ve also noticed that something I don’t talk a lot about is disease. Ironic, right? That’s the whole point of this blog. I never blogged before because I thought it was kind of conceited of me to think that people might want to read about just my life. And when I got diagnosed I thought hey, now I have something that’s actually worth sharing. Maybe I can help someone else who’s going through the same thing. Maybe I can meet someone (still hasn’t happened yet) who’s going through the same thing.

But then the blog became a lot about my life and not a lot about being sick. I guess because I don’t really think of myself as sick? It’s hard to think of myself as being a sick person. A person with a disease. And yet when I’m planning a trip (like to see friends in New York and Boston this month), I have to consider when can I go? It’s easiest if I go on leg injection days because I can do those myself. And I have to bring my injection kit and my sharps container and all my medications (even the just-in-case ones). And I have to ask people if they’re squeamish and I have to find a place to do the injection where I won’t bother anyone.

And I can’t really ever be carefree. I think it’s already really indulgent and weird of every generation to see their college years as years where nothing is real (“you’re not an alcoholic until graduation” is a common saying) and you can do whatever you want, but that didn’t stop me from wanting that for myself.

Sometimes I just don’t want to sleep. Sometimes I just want to stay up late for no reason and watch the hours go by and read books or write or talk to whoever happens to be awake or wander around my house or stare at the ceiling and wish I had imaginary friends. And suddenly I have to be very conscious of that tendency in myself, and tell myself to go to sleep. Because losing sleep puts me more at risk for symptoms. But I don’t really see it as losing sleep, I see it as gaining hours just for me. Maybe by being sick, then, I’ve lost a little of myself?

The last time I wrote something I really liked, I ended it by saying that it was a story without a conclusion or a moral. It was just a story of real life, and not all real life stories have punch lines or final thoughts. Usually they’re just continuing on.

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December 31, 2011 Debaucherously Must Be a Word.

New years resolutions are something that I never do. At a party I went to for NYE 2010 we had to fill out these sheets that said:

Movies to Watch (The Da Vinci Code, Fame, Zach and Miri Make a Porno)

Talents to Pick up (Yo-yo-ing, Studying, Head-banging)

Books to Read (War and Peace, Clockwork Orange, 1984)

Places to Go (Seattle, college, OBX)

Weird Foods to Try (Cheetos, Coke, Cherry-flavored stuff)

Some of those (movies and places to go) got completed pretty much because I already knew I was going to when I filled out the sheet. Books to Read is still a failure (oops) and weird foods to try was a list of my least favorite foods (not gonna happen)*. Talents to pick up didn’t work out as well as I would have liked. The point being that I really didn’t take it seriously. OKAY, this year, I’ma try harder. 2012 resolutions:

1. Get a second tattoo (I’m thinking “live debaucherously”) (why does it say debaucherously is not a word??) (….)

2. Get an A+. Except I really don’t want to make this a resolution because I’m scared that I’ll try reaaaalllly hard and still not get my A+ and then I’ll be sad. This is a half resolution.

3. Respond to emails. Haha. But actually.

4. Read those books I said I’d read in 2010.

5. Write something that I’m actually happy with.

6. Go back home. I’m going to do a tour of former homes I think, hopefully including: Provincetown (MA), Barcelona (Spain), Charlotte (NC), and maybe even San Francisco (CA).

7. Do more crazy things. I think I was pretty crazy in high school (hello stumbling home barefoot at 3AM…) and I think I’ve kind of lost my sense of adventure in college, which completely sucks. More adventure please!

8. Run for an ADP office. Not sure which one!

9. Do ITCOO again!

10. Memorize The Love Song of J. Alfred Prufrock. Wait! If you haven’t read this poem, immediately stop reading my blog and click here. Come back after. Anyway, this is my all-time favorite poem and it would be nice to be able to just know it. All of it. But it’s so long. But I can do it. Gahhh…

I am not even happy with that list (hey list item #5) but it’s a start I guess? Anyway, happy new year everybody, hope your last day of 2011 is fantastic and that the world doesn’t end and all that :) I probably won’t blog again for a bit as I am going on vacation, but see yall in 2012!

*Cheetos are a disgusting food with terrible texture, taste, color, and powder that is left on your fingers alerting everyone that you are a cheeto-loving zombie type of person.

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December 22, 2011 Vivir

Vivir- “to live” in Spanish

I was terrified. This is my first ever tattoo (probably won’t be my last) and I was so nervous.

In the past year there have been so many really painful medical procedures (a ton of blood draws, MRI contrast injections, copaxone injections every day, the glorious PICC line from when they thought I had Lyme disease, and, of course, the spinal tap), so I guess what I was thinking is that if I could make myself go to the hospital and willingly sit down and let them put a giant needle in my spine or a 34cm tube through my vein, I can probably go get the tattoo that I’ve been wanting since high school.

For once, logic worked out for me. Often, my brain doesn’t listen to logic. This happens a lot on airplanes, where my logic is saying reasonable things like “people fly this route every day” or “air travel is the safest form of travel” but my brain is saying “what is that noise? does that mean we’re going to die? we’re going to die. DIE.” But today my brain stopped saying ridiculous things and let me get my tattoo.

Senior year, as we were all preparing to leave Barcelona, a lot of the girls started talking about getting tattoos to sort of commemorate our time there or our high school years. Ada got a feather behind her ear that looks fantastic, I don’t know if any of the others went through with it. I think “vivir” appealed to me because living in Spain was one of the first times that I really felt like I was living. Unconjugated, it doesn’t make a lot of sense, but I kind of like that it’s just “to live.” When we were learning the “acabar de” construct in Spanish and we had to take turns formulating sentences, I said “acabo de vivir, pero siempre tengo alma.” Google translate doesn’t see that the same way I do, and it was naive and teenager-y and cliched and not as poetic as I thought it was.

As my dad pointed out, very few teenage girls bring their fathers along to get their first tattoo. As I pointed out, I’m kind of terrible at being a rebel.

 

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October 13, 2011 Identified!

Hi :) so over at Favorite Household Object (my mom’s blog), my mom writes a daily meditation on an object every day. I thought I’d try something similar.

Object: my new medical bracelet

I finally got a medical bracelet! I think it says a lot of things for a piece of black rubber with some metal attached. Here’s a list:
1. My name (duh)
2. My parents’ home phone number
3. That I have MS
4. The medication I’m on
(and now for some less literal things that it says)
5. That I have super good fashion sense (jkjk but I have gotten some awkward compliments before people realize what it is)
6. That maybe sometimes I’ll need rescuing
7. But also that I’m looking out for myself
8. That I might have some seriously misplaced faith! To expand on that: I go to a college where students drink a lot, and sometimes get sent to the hospital. Say somebody was to find me in some super bad state (people with MS have, in rare cases, experienced sudden and complete paralysis), who’s to say that they wouldn’t just assume that I’d been drinking a lot or doing some drugs or whatever and not notice the bracelet that says otherwise? In the real world, where people don’t get blackout drunk on any day of the week (seriously Wesleyan, who decided that Wednesdays were “bar night?”), the bracelet might come in handy, but in my current situation I feel like it could go unnoticed.

Anyway, the point is that I’m feeling pretty labeled, and I’m not sure how to feel about it! And by labeled I mean literally, like the files on the office where I work or the mouse brain in a jar that we looked at in my neurobiology class. Picture of bracelet to follow!

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