Monthly Archives: February 2016

Love means room to breathe

(Phobic—Plumb)

Alternatively titled: How you know you had way too much energy the day before…

Some days I have way too much energy…and add in a little bit of unexpectedness and a little bit of loneliness and you get the recipe for a girl bouncing figuratively off the walls…

So yeah…I hand wrote a blog post instead of typing it…but so many of the words are on top of each other, spelled super super wrong, or just plain illegible that I have absolutely no idea what I meant…

The one part I can read is talking about how I was studying for my law exam and was wondering if they had marijuana to share in Congress if it would be chamber pots.

Also, instead of getting the snow off of my window the normal people way, I started throwing the snow out of the way when I opened the window. It was exhilarating, but not something that I would recommend, as I ended up with a wet seat, and a puddle of water in the candy wrapper holder in the door (IDK if it is supposed to be a candy wrapper holder, but that’s what they’ve always done in my experience). It is really awesome showing up at school in the morning with a wet bottom…

Totally unrelated: but you can tell where my attention goes when I am studying when I got ready to finish up some homework and remembered the exact page number and location on the page that I had left off…but had absolutely no idea what the topic I had been working on was beyond that it was in the red and blue book.

Totally unrelated part two: I semi-accidentally started picking at some old mental wounds yesterday and I was like “WWKM, what would Kati do?” Kati Morton is a social media presence that I follow on YouTube…she always has great ideas like talking back to the hurtful things people say to you or that the voices in your head say to you…so I tried it…and 1014 words later I will say that I haven’t decided yet if it is helpful or not.

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For Immediate Release: Today is Take Action Day, This Week is NEDAwareness Week

SP? OCD? ASD? One ME!! Supports Rare Disease Day® (and eating disorder awareness) and Joins Global Movement to Raise Important Awareness for Rare Diseases

My corner of the internet, Next to the ATM—March 1, 2016—Wiggle Worm has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 29. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.

In real life, I am hosting an event at my school to spread awareness about Rare Diseases! Rare Disease Day is on the rarest day of the year this year, February 29th, and we are celebrating on March 1st. I am really excited…and I probably need to start thinking about what I am going to say, because I tend to think I will come up with what to say on the spot and realize about ten minutes in advance that I should probably write it down and since ten minutes before I will be finishing up an exam, it will be a little bit important that I write it down more than 10 minutes in advance (I know, I should be more responsible, but distrAction is my modus operandum…that and making messes…yes there is homemade applesauce all over the counter in my kitchen…I would have cleaned it up but then I checked my email and sometimes getting out the door can be a challenge).

Creating a community of mutual respect, everyone has their own unique challenges and things that make them tick. People with rare disorders are no different, and many of them feel rejected by the medical community when they are running the marathon of finding a diagnosis and treatment.

Y’all know I don’t post identifiers on here, so if you are interested in attending the event and need more information, do not hesitate to contact me.

According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments.

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®, the largest and leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases.

For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us. For information about global activities, go to www.rarediseaseday.org). To search for information about rare diseases, visit NORD’s website, www.rarediseases.org.

Media contacts:

Jennifer Huron, NORD, 203-744-0100, jhuron@rarediseases.org

Also, to give credit where credit is due, I got this template in my partner packet…so you can probably tell which words are my own and which were maybe not my words…also, I’m pretty sure take action day was supposed to mean talking to government people about creating new laws about eating disorders, but I really think that the government should stay out of things that are more personal and let people figure things out for themselves. Laws like not murdering people=very important…Laws about a lot of other things: kinda  ridiculous. Just let people be people.

You Won’t Know Until You Try

(Never ever ever give up—Thomas & Friends)

I thought I was ready to focus in class Tuesday. Then a stupid truck with a flashy light on top decided to park in front of the window for the entirety of the class. The truck won. Amount of antibiotic resistance material Wiggle Worm learned: minimal…Amount of time spent looking out the window and watching the light go on and off: umm, well, a lot? I tried really hard to focus, but even if I turned so it wasn’t even in my peripheral vision, I still knew it was there and besides, everyone knows I can’t sit still in class, so it wasn’t that long before I was once again facing the window and therefore was drawn into watching the lights again. Someone please explain to me why anyone thought a building with windows in pretty much every room was a good idea for a school. Also, please explain why the blinds for the windows are 100% see through—what is even the point of that?!?!? Also, people should recognize that I am trying really hard to learn and not do distracting things like have a flashy light right outside the window…sorry, but this is a school, and there are certain things that just aren’t okay at schools…kinda like how some schools send girls home if they forgot that they were supposed to wear clothes they didn’t outgrow ten years ago…

I thought I was totally 100% recovered from an incident last week…until I wasn’t wearing my headphones…It probably isn’t a good idea right now to go into details, but basically last week Tuesday ensured that my week would be from my nightmares. I thought that I was doing totally fine aside from a little frustration from the academic setbacks resulting from the fallout. And, I mean, I was doing REALLY well, but really well does not equal 100% recovery. I thought I was rocking it—I could see BPG* and it was annoying but didn’t really hugely negatively impact my day, and I didn’t feel all my muscles tighten to make me as small as possible (as if this girl who likes vibrant colors could really shrink down and be unseen…lol…literally). Yay! Progress! Until I was not wearing my headphones and heard The Voice…without even the visual I was once again hiding. Luckily, I was doing well enough that it wasn’t a major setback, but it definitely was not comfortable…so I guess we’ll go with that I am 96% recovered from that particular incident. Still, I am thankful for how much better baseline is than it was a year ago, because a year ago I might not have been doing this well even without an incident.

*no, I will not tell you what BPG stands for…trust me, you don’t really want to know…I will throw out there that the B definitely does not stand for the B-word though…I might not always be nice inside my head, but I definitely don’t use swear words to refer to things, because I have a vocabulary of real words.

Annoying is a snow day when I can look and even go outside and see that people are still speeding way too fast outside on the roads and don’t appear to be having any difficulty stopping and turning…well, aside from the fact that about 50% of people seem to have difficulty understanding what those big red octagonal signs are for regardless of the weather…

Speaking of idiotic drivers, yesterday someone WATCHED me make a three point turn so that I could park behind them…and then got back in her car and scooted back so that there was a space precisely the size of my car behind her (which obviously means I wasn’t going to be able to get into it), and a space just slightly smaller than my car in front of her. Oh my…if I hadn’t been busy turning around to look again for a place to leave my big iron thing, I would have given her a piece of my mind…so it is good that I was busy, because my mind is valuable, so I shouldn’t be giving it away to undeserving people 🙂

Also, I really appreciate that school no longer waits until everyone is seated in class to cancel classes for the day—that is super obnoxious and something they did repeatedly a few years ago…but it would be nice if they could cancel it before I pack my back pack and lunch box and walk out the door. I did check my email as soon as I got up AND before I finished packing up…luckily, my mom saw the email immediately when it was sent and texted me so I got the memo prior to arriving at school and potentially discovering a half-full water bottle without any way to fill it up on my own…which meant a detour to the lobby to turn in homework, send emails, and finish this post before throwing everything from my backpack onto my bed to have a do-over on today’s plans…frustrated, but All Things…

Is it so wrong to be who we are?

(Nice Naïve and Beautiful—Plumb)

I recently discovered this song, and I really like it. It is supposed to be about sexual abuse, but it is a sweet song and the lyrics can definitely apply more broadly…I find that a lot of material originally intended for sexual abuse has a more broad application than originally intended.

“She stands alone defending her name when all that she’s done is be who she is.”

When the other side claims friends first, all the sweet joy in the world might not be enough to pull people into my own circle. I am so thankful for the new friends that I have and the people who joined my team, but it is hard when it feels like all your friends have been pulled away…there have definitely been times that I have frustratedly asserted that if this is what was required to make new friends that I don’t want it. I actually had plenty of friends before. Other times though, I can see that having (and/or getting) to make new friends has opened new opportunities for me to help people—maybe it doesn’t feel quite as good, but there is definitely one person in particular I can think of who really needed support and this particular person I would have been very unlikely to have encountered if I hadn’t needed new friends…maybe someone else would have been there in my place, and obviously I am not perfect, but I try really hard…

“Well is it so wrong to be who we are when all she’s done is fail ’cause she’s so nice naïve and beautiful”

I kinda doubt beauty had anything to do with anything for me, but it seems clear to me that a lot of my problems stem from being too nice, too quick to forgive, and too naïve to realize that there was a problem before I was already sucked into the vortex. I hated myself for that, but couldn’t figure out how to turn off being nice and looking out for everyone else—even the “bad guys.” It took a while to realize that I can’t change who I am…and who I am is pretty awesome…yeah, I might get taken advantage of a little more often than I’d like because I hate standing up for myself and I really do want to make people happy so a SMALL amount of self-sacrifice feels really good until it becomes excessively repetitive or a lot more than a small amount, but that also makes me a value-added part of relationships and maybe it is worth it to be trampled in exchange for seeing other people happy…especially since I truly do find joy in seeing other people happy.

“Day after night she holds an ache and won’t budge to show this secret place well is it so wrong to hang on to hurt”

I am someone who even when pressed for an “honest” answer will tell you 97% of the time that I really am okay…or even good. I am learning that isn’t necessarily a cover-up or a lie, but just that my optimistic side has taken the reigns. Sure, I might have so much going on internally that I feel nearly incapacitated, but I also realize that if my heart is still pumping oxygenated blood then I could definitely have it a lot worse. I will certainly make it out on the other side even if anxiety peaks, even if I fail out of school, and even if I live in complete isolation. It might not be fun, but life is a gift and as un-fun as it might seem, I know I should value the gifts given to me…and life is a gift that I know is super awesome sometimes too if I can just hold on through the less than awesome parts. Okay fine, sometimes it is an intentional stretching of the truth because I can’t talk about it right then for whatever reason…but mostly it is really because my optimistic side says that I am totally fine.

“There’s a face behind every scar, but there’s a love overflowing with gladness. Get out of that place that’s restraining your love.”

As I learn things in the land of academia, I learn more about how things that felt like injustices to me were more than just inconveniences that I should have written off immediately…but being at school also lets me see the friends that remind me that I am more than a conqueror even on the days that I’d like to put down my armor…

Sometimes what doesn’t kill you doesn’t make you stronger. It leaves a scar, or becomes a child to raise.

I am a blessed person, and this week is going to be so much better than last week. Life hurts, but God heals.

A breakthrough is coming, coming for me, ’cause my heart it was made to fly

(Breakthrough—Britt Nicole)

I had two big breakthroughs this morning…(assuming that this=Saturday…I currently have a large number of half written posts and am planning on posting or deleting soon in between cramming a billionty jillion things about therapeutics into my head for the exam Thursday afternoon)…

#1: I spent a long time trying so hard to be good enough. Someone was creating a standard that bounced like a ping pong ball back and forth across the room, while I tried to chase it, almost catching up before it changed directions and went way over my head to the other side again, like a frustrating game of monkey in the middle with two professional baseball players throwing the ball and a barely crawling toddler as the monkey trying to intercept it. I tried harder and harder even as I was being kicked around more and more. I just wanted to be good enough, and thought maybe if I tried just a little harder I might get there…and when it failed I just became even more determined to do better the next time. And I’d try again and fail again and try again and fail again, never really making any forward progress. I couldn’t accept that the standards were impossible, instead determined to be good enough and prove that I could do it. If I were good enough maybe she wouldn’t text and make phone calls and hang out with friends while supposedly talking with me. If I were good enough maybe things would get better. I learned to blame myself—of course she doesn’t like me, because I couldn’t be good enough to meet her standards. Sure, one day the goal was to write nothing negative and after trying that for a while the goal became to write nothing positive, but surely there was something I was missing to know in advance what the goal was and even if there wasn’t it must somehow be my fault that I didn’t know the entire game had changed.

Even once I broke free of that relationship (thank God), I didn’t realize it until this morning, but I have still been trying to be good enough. Now I need to be good enough at hiding so that I am not ever seen and followed. I have to be good enough at school and life that no one can say “I told you so…I told you you’d never make it.” I’ve been chasing good enough, not even knowing what exactly good enough would mean or bring me. I doubt any amount of good enough would ever truly be enough to build positive rapport with someone who is not interested and would rather build more walls (with one way mirrors to follow me without my knowledge)…yet I’ve been chasing it anyway…it is time to leave hope behind. Hope is helpful short term, but it hurts long term and it was time to say goodbye to hope and just put my head down and get through life.

I can’t protect my friends to the extent that I would like, but I can protect myself from future hurt, and to do that I need to stop chasing good enough and just accept that things are how they are. Hope was good for a while, but eventually hope just creates more hurt and it is time to let go. I have learned that maybe later means no enough of the time that it is better to let go of hope and maybe be pleasantly surprised later than to hold on and let my balloons keep being popped.

#2 Inclusion is SUPER powerful. I spent two hours studying totally alone in my corner of school. I was getting frustrated because I wasn’t getting very much done. I spent 30 minutes half tutoring, half hanging out with my friends and half studying (yes that does add up to more than one whole…math is hard…). I made more progress in that 30 minutes than I had in the previous two hours. How does that happen? Inclusion. Feeling like I belong instead of feeling isolated is hugely important and helpful in getting things done. If I wouldn’t be totally in the way, I would set up shop right there all day every day. It might not be exactly where I’d like to be, but it is so much closer than the corner where I usually sit. I can be at least partway involved. It felt so good. If I thought I could get away with it, I’d find a chair tall enough to use the edge of the counter as a desk and an extension cord for my computer and call that space my new home…something tells me that if I tried that I wouldn’t make it more than a few hours before someone told me I was in the way and needed to move…until then it would be quite thrilling though to be sorta included.

Also, not a breakthrough, but just an observation: you are probably too tired to be grocery shopping when you get stuck in the frozen vegetable aisle because you don’t know what to do because they are out of the ones you were planning on buying…it’s not like I really had much of a choice when to grocery shop since I completely ran out of vegetables as of dinner today, but I probably need a new plan, because grocery shopping after church means it will be around 7 by the time I get there and my brain will be shutting down…it shouldn’t be that hard to figure out that all I need to do is scoot over and pick a different brand and put it in the cart.

The only anesthetic that makes me feel anything kills inside

(Cut–Plumb)

The harder I try, the harder, it seems, that I fall. If trying hurts this much it seems like perhaps giving up would be better. I am happy on the outside, but on the inside I am not happy. I am frustrated.

I guess I kinda am an artist though…see my journal…aka my lyric doodle pad…

20160212_082817

This whole semester has been hard, but it is really stupid what sent everything the rest of the way into me being totally over it and ready to quit…I was being a big girl and using my inside voice instead of screaming down the hallway about what I wanted, so I wrote an email and even used the red exclamation point that feels really rude because it tells everyone you think you are more important than the rest of the world and expect special treatment…I don’t really think I am that special, but I really really wanted something and that needed to do whatever was in my power to make it happen…well, except my email went unanswered until it was too late…what I wanted was gone and even if it wasn’t, I was at a different school and class was about to start…it isn’t really anyone’s fault—people have more important things in their jobs than reading an email from someone whose emails are usually not urgent…but my arms were empty, and I longed for them to be full. I would have settled for just my eyes being full, but all I could have was google images…

Like this: SO adorable, but not what I really wanted.

feet

I can’t pretend that I’m fine…I can’t do this

(I can’t do this—Plumb)

Disclaimer: I wrote this last night…it is crazy what some sleep can do…still true words, but not overwhelmingly knocking me over anymore…

Nearly every day I go through the same rote conversation at least once…often many times throughout the day. How are you? Okay…I know it isn’t just because of all the times I worked on learning conversation by rote memorization, because unless every other person I encounter is okay or good or fine 95-99% of the time, everyone else does it too. In French class we learned responses to that question that were actually honest and how to phrase it to a friend, a family member, a teacher, a boss, and a stranger. I have always thought that French class was so much more useful than English, and this is why…I doubt that I am ever in the real world going to need to be able to underline the adjectives and circle the conjunctions, but in the real world I really do need to know how to properly communicate with a variety of people, and sometimes it takes a non-traditional definition of the word “okay” to make that statement true. I mean, yeah, my heart is pumping oxygenated blood so I am great, but that’s not really the whole picture.

Anyway, sometimes it just feels like I am living a big lie, because I have the routine down so well now that I don’t even think when someone asks me how I am—I just answer…and now that I actually talk with my words out loud, my best friend who used to not let anyone answer with good or okay doesn’t really mind if I say that, because I am making conversation and that is awesome…plus she can read me well enough to figure out what I am not saying most of the time anyway. But sometimes I am not okay.

If I am at a 10 out of 10 on the pain scale, you’ll figure it out pretty quickly whether you know me or not, but if I’m at an eight, for the most part, even close friends don’t have to know…which is great in terms of not making things awkward, but not so great when someone really wants me to try dancing. It does look like fun, but if I don’t really know how to communicate the tangle of words in my head, it just starts feeling really frustrating. I so appreciate being included, and I want you to know how much I’d like to be more involved, but the connection between mouth and brain is short circuiting probably secondary to things including sleep deficit and residual deficits from years of not speaking.

I don’t want to go to school tomorrow. Or ever. I feel frustrated and isolated and alone. Academics are hard but I have to pretend I don’t care that I am not getting it, because it is starting to feel like high school again where it doesn’t matter what I actually said, because all anyone is going to say about school is going to invalidate how hard it feels…it is easier to pretend I don’t care and invalidate it myself before anyone else can do it for me so it doesn’t hurt as much when they do it.

And emotionally it is hard when there are just a few things I want…sometimes maybe even just one small thing that I want more than anything in the world for that moment, and I don’t know how to access it.

…but you know what, I have to remember like the song says at the end to “breathe the air…you’ll be free to do anything.”

Sometimes beautiful houses are built that cause new people to take all the parking spots, and sometimes I leave my headlights on all day, and sometimes things go wrong with school and/or academics, but someday I will be SO outta here. Unlike high school where I knew I was probably going to come back and hanging out sometimes, as soon as I am out of here, half my brain says “but all the people you’ll have to leave behind,” but the other half says “FREEDOM!!!!! LET’S GET OUT OF HERE ASAP!!!!” I might not be able to see the light at the end of the tunnel, and it might not be a very bright light, but I have to believe it is there. Someday I might not have my dream job or even a job I particularly care for, but I will be out of here, and I will be thrilled. My heart will be sad for all the people I’ll see so much less frequently, but TBH, as a girl who pretty much only had friends throughout school as a function of who was sitting next to her in classes that particular trimester, loss of “close” friends is something I have experienced over and over, and as long as there is someone new to fill in the gap I cope pretty well…on the rare occasion I go from someone to no one I struggle hardcore, but the transition from someone to someone else is challenging but manageable…especially now that I can use my words to include myself without waiting for someone else to include me.