mslifeisbestlife

MS on the internet confuses the heck out of me.

I don’t know if I’ve mentioned this, but my Uncle Tim (who is British) directed me to shift.ms which is a social network for people with MS. It’s based in England, which I think is why he was aware of it. It’s so cool that there’s a social network for MS! It’s actually a great idea for the MS community because there are only 2.5 mil of us worldwide (making MS 10 times less popular than TravelZoo) (don’t ask…) and so it’s kind of hard to find each other. Or when we do find each other there’s a lot of awkward “oh my god! you too?? this is SO EXCITING” which is probably not the right thing to say to someone upon finding out that they have a serious disease…. oops.

My problem with shift.ms is that it’s secretly a little useless. The way it’s set up is that everyone’s posts and updates just filter into one gigantic worldwide newsfeed, and it becomes really hard to identify what’s relevant to you. Also you can’t really find people who might be in the same age group or location as you are, which is kind of my goal, right? Anyway. It’s still a great thing to have, even if it needs some work still!

Bff-est of bffs, MDeck, recently texted me asking what the whole Race to Erase MS thing is about. Honest answer: bro, ni puta idea (since I’m not supposed to curse….in English, anyway). Race to Erase MS is a kind of confusing event that seems to be open to only celebrities (oh hey, Clay Walker) and doesn’t raise as much money as it should. 1.8 mil this year guys? Kim Kardashian’s wedding cost 10 mil and lasted a heckuva lot less long than MS. By “less long” I mean “like 2 months or whatever” or “not a marriage.” But anyway.

My point is that celebrities, as happy as they are to pose and smile for MS, don’t seem to want to give up tha cash money to help us out. Which is cute, right? Awww, little charitable celebs! Spending their pocket change on us! #bitter

So those are today’s naive thoughts on MS and the internet, lemme know what yall think!

Tomorrow Mom and I are having Cinda (top commenter and real-life friend person) and her daughter Freya over for lunch and I’m making blueberry crisp which is exciting hope you guys are also having a good start to summer/end to spring!

Not really, I’m not angry.

So, what’s up with me?

MY ROOM IS SO EMPTY. ALL MY STUFF IS GONE. DID I GET ROBBED OR SOMETHING?

No, no I didn’t. My parents came yesterday and robbed the crap out of me helped me move all my stuff out. About half of it went to a storage facility and half went home with the parentals.

It’s really weird to be in my room without all my stuff. I keep having conversations in my head like these ones:

-Hey self!

–oh hi.

-Let’s make cupcakes! I’ll just grab my cute red and white cupcake wrapper thingies and—-

–yup. They’re not there, are they?

-Nope.

–yup.

-Hmm. Well. This red nail polish looks really awesome! Remember when I used that sparkly glitter silver polish to do a cool design on top of that red? I should do that again.

–try to find the silver nail polish. I dare you.

-Well then. To facebook! Again!

My room is fabulously terrifyingly stunningly empty. It’s a non-room It’s crazy. I’m a bit of a pack rat, so my room is usually SO FULL OF ALL THE THINGS.

Anyway. Tomorrow I’m having the local Mormon missionaries over for dinner so we can talk about religion for a while. I think it’ll be fun. So I’m going to go make some chocolate peanut butter pie now. To my fellow college studentz, I hope your finals are wrapping up well! My stuff is already all done which is nice but also weird.

I did this really weird thing where I packed up all my work stuff the other day and headed up to the science library, unpacked my stuff, plugged in my computer, and realized…I have no work. I am a crazy person. I did all those things out of pure habit. What is my life?

That’s today’s confession of insanity, see yall soon! With pictures of chocolate peanut butter pie if it turns out well!

In honor of my brotherbear Jacob’s sixteenth birthday, I thought I’d write another brothersome blog post. In the form of a letter. To said brother. Who does not read my blog.

Dear Jay-bob,

I can’t believe it’s been sixteen years since you were a strange creature who appeared in our house in Charlotte, wearing a green onesie and wriggling around on the floor. Is that sentimental and embarrassing? Oh, I hope so. Now that we don’t live in the same house anymore I don’t get nearly enough opportunities to be an embarrassing big sister.

I miss you lots, like all the time. I know we tend to not get along at all, but we still have our moments of comedy (Backstreet Boys singalongs in the basement, dance parties in the kitchen, etc etc) and togetherness. You also send me awesome text messages when you do text me (which is rarely).

I was thinking of giving you some sort of wisdom about being sixteen but a) I’m not wise and b) I hate that whole “life at sixteen” type of mindset and c) we’re so different that I don’t think anything I learned from being sixteen (or seventeen or eighteen or nineteen) would be applicable to your life.  So I’ll leave the advice-giving to Modge and Podge (and Ben. Ben gives great advice. Like “get pregnant.”).

Anyway, birthdays should be awesome days so I hope your day is awesome sauce-um. By that I mean I hope Ben isn’t destroying your birthday cake like he used to do or peeing on your door. And I hope golfing with Dad was fun and I hope dinner tonight is great. I wish I had come home for today! But I’ll see you within the next couple weeks.

Love and Embarrassing Big Sister Sentiments,

Me

I think I’ve talked before about staying up late to think, and how I used to stay up late at night for no reason. When I was little I used to imagine hordes of technicolor bees on my ceiling and would stay up just watching them.

Tonight I (along with a sizable chunk of Wesleyan) am up for a more tangible reason– Avengers! We are maybe the only theater that cheered every time Joss Whedon’s name appeared in the credits, hooray Middletown/Wesleyan/love for alums/Joss Whedon! It was a great movie! I very much enjoyed it. Then again, I enjoy destruction. And action movies. Especially those which are just a lot of destruction and not a lot of torture/gore, which basically describes Avengers quite well. Also a cast of heroes so likable that the theater cheered at least 20 individual lines (again, might be a Wesleyan thing).

ONE THING that super amused me though. I spent the whole movie trying to make sure I’d remember this (to put it all over the internet) because it was in the first scene: There’s this thing called the tesseract which seems to be a weird alien energy source (also this is not spoilers because as I said, first scene) is said to be “radiating interferons and gamma rays.”

Which is funny to me because these are interferons. Oh crap, did the scary alien energy source just help with your MS/hepatitis/cancer/flu/STD? We better shut that shit down, it’s dangerous. Did someone just decide “interferon” sounds like a scary word? Gamma rays are pretty bad, I’ll agree. But interferons. You could really do worse. I lol-ed about it for a while. Possibly by myself.

This is possibly not that interesting to the rest of you so I’ll do that thing where I’ll say something everyone can agree with and then the crowd can cheer: Whoa, Avengers was SO AWESOME!

*cheers from audience*

speaking of which, just hit 5,000 views today. Thank you so much for reading, wish my thoughts were more interesting. Tell me in the comments if there’s anything I should be writing about that I’m not!

Love and Superheroes, goodnight everybody

So today was an interesting day. This morning, I think sixteen (is what I heard) Wesleyan students went over to Middletown High School (the local high school) to give talks to small groups (around 25) of students. I was one of them (in case you didn’t get that). Our talks were a part of the school’s Diversity Week, and we were supposed to talk about pretty much anything relating to identity.

I’m still a little giddy or something which is probably why I’m not super winning at speaking English. Oops.

Anyway.

I gave my talk on productive ways of handling changes in identity. We talked a lot about identity, how we see our own identities, what can change our identity, if those changes are positive or negative, and good ways of dealing with them.

Of course the MS thing came up because it’s been my main change in identity, getting used to being sick/disabled/whatever this is. I was really surprised/happy/is it awkward to say happy? about the amount of MS awareness that was happening in the classroom. One kid’s aunt has it, another’s grandmother, another’s mom works at the MS Foundation, the teacher’s sister-in-law just got diagnosed, lots of connections. And then one girl raised her hand and said that her grandmother has MS, her dad just got diagnosed, and her sister is in the process of getting diagnosed. And what advice would I give to someone who’s 16 and getting diagnosed with MS? I didn’t know what to say.

Sixteen sounds young to me. I was a really different person at sixteen. I still lived with my parents, I was in high school, school wasn’t that hard, things that made me upset were mainly boys. (Well, boys can still make me upset)

She later revealed that her sister was in fact her triplet (one of her triplets? how to phrase that?) who was sitting next to her (they aren’t identical). We talked for a bit after my speech-y thing was done. It was really good to commiserate with someone, about spinal taps and MRIs and numbness and everything. I also finally felt like I had done what I wanted to do over a year ago when I started this blog, which was to have the chance to help someone else who was just starting out.

I gave her my email address on an index card. I hope she gets in touch.

….because it’s really not. I can’t promise to be on top of my blogging for the next couple weeks, there’s school and some other stuff going on that’s making me not too enthusiastic. But anyway. Here’s my latest short piece for my writing class (copping out hardcore on this blog post, I know, but I hope you enjoy the writing). OH and it’s about MS. The assignment was to reclaim something. Also, here’s the song that this post’s title is from, in case you were wondering.

Reclaiming a Body

My veins are easily accessible and the blood which flows through them has excellent pressure. The technician injecting my contrast material says I don’t look my weight and wonders aloud if she’s giving me too much by accident. The material flows into my vein, which was easy for her to tap, as she says this and I smile back up at her while lying on the table which is called a bed. It is not a bed.

When she is done, there is a snapping sound that I never understand and have always been too scared to figure out. I don’t look, ever. The snapping sound, she folds my arm over me, I am not allowed to move. She presses a button and the table/bed rises and then moves back inside the tunnel that is the MRI machine.

The headphones covering my ears play hip hop quietly and soon the noises of the MRI mingle with beats.

Ten more minutes, says the technician’s voice, I hear that through the headphones too.

I am alone.

My subcutaneous layer is too thick in some places and too thin in others. At the gym I’m not supposed to work out my arms because I already don’t have enough subcutaneous tissue there. There needs to be tissue there so I can do injections there, my stomach has already been eliminated as an injection site because of the long scar that runs across it.

Appendectomies done in small towns leave scars three times bigger than those done in big cities.

I am a collection of easily accessible veins and too much or too little subcutaneous tissue and a brain and a spine which get lesions sometimes and a long, thick scar across my stomach and a small, circular scar on my left arm and a small scar underneath my chin and a small scar on my forehead and a small tattoo behind my right ear and eyes which don’t focus well without corrective lenses.

I am identifiable. I am a body, I am the property of doctors who have been fixing me and testing me since I was just born and almost died and they told my parents eighty percent chance of death and if she lives she will be mentally retarded.

I am not mentally retarded, or they say developmentally delayed now. They still said mentally retarded back in nineteen ninety two.

This body though has been mine as well. It has grown and changed and stretched and sagged though puberty is not something I have ever been comfortable talking about. The word puberty has never been a fluent part of my vocabulary.

I think about in movies when someone dies and someone else has to go to the morgue and identify and claim the body. Because the previous owner has left, shall we say. If I were to die, I don’t know if they’d do that. Maybe the doctors would continue to poke and prod this body which is mainly theirs and my absence mentally would be not an issue. They would not need to call anyone, and there would be no body bag because I would be lying on another table which is not a bed being cut open and then sewn up again and fluids would be taken before they dried up and another MRI would occur and this time they would not need to tell me not to move.

Things I think that I don’t like to say:

-I want my life back now

-I don’t feel like me anymore

-How did this even happen?

-This is not actually happening

-None of this is real

Because as my writing prof points out, those are pretty cliche sick person things. He says I’m pretty good at not being cliche otherwise.

Symptoms from the past 24 hours:

-migraines

-my entire right leg being numb

-my feet being tingly

-my hands being numb/tingly

-my face being tingly

-nausea

-dizziness

to which I say: please stop, I have a lot of work to do and it’s not fair.

Will go back to trying to be a sick person with original thoughts now.