Three Weeks

Currently, I am many things.

There are many me's. 

The one at the forefront is the stressed version of me.

The exhausted version.

Yet this me does not stop, because she cannot stop.

This me does not see any other option than to continue.

To make it through the next three weeks. To not lose it, completely. To be awake and mostly present. To work and write and plan and talk.

To be a student for three more weeks.

Then, I don't know which me will take over.

Probably the exhausted one will kick in after a few days. After I realize I no longer have to be "on" all the time. When it sinks in that I can relax; there's no where to go, no one to see, and there are other people who will take care of the rest.

I can't let myself go there yet, though.

I have to keep going.

I have to let the stronger me's take over, and keep me going.

Three more weeks.

change

Things have changed around here because I've changed.

This started even before I got to college.

I don't know how much it came through here, but I certainly felt it.

I had all these huge life changes and a busy life and amazing things and hard things.

But somehow it seemed like I didn't know how to put them into words.

Or if I even wanted to.

I didn't have the desire to share every detail here.

Well, I did, but it would have just been a laundry list of what I'd been doing. There's no point to that. No one cares. It's the stories behind the things that matter.

My theory (just because I haven't been here doesn't mean I've stopped psycho-analyzing myself) is that I started experiencing, instead of watching.

My senior year I feel like I reentered the world.

I became an active person who could participate and truly live.

I started to find my own people, ones who I saw every day.

And that led to me not being here as much.

This blog started as a way for me to express myself and feel like I was connecting and interacting with the world in some way.

I'm not saying you or this space are no longer important, I'm just saying I've changed.

And I'm still trying to figure out what that change means for this space.

again

Can I just say this again?

Because it's still true.

Except this time it's the biggest party of the year.

Trust me, I'm not just "tired."

I just don't have a better word to describe it.

And also some other stuff.

Less bloggable stuff.

Because you know, they are actual people, these people who are taking up so much of my head space.

And, you know, I would like to one day be employed.

Sigh.

Good night.

the difference between what is right, and what is easy

this is what runs through my head as I walk back.

as I leave the party before everyone else.

when I'm going back to my room, not out to the next party.

when I'm not dressing up for the 80s theme.

when I say no, I can't.

or no, I'm tired, and people don't get it.

they make fun of me for being lame.

or nerdy.

it's the feeling that I know I will appreciate this action I'm taking in the future, but right now, it sucks.

right now, I'm the only one walking back, not heading out.

the only one in my PJs, getting ready for bed.

at least it feels that way.

but I am doing what is right for me.

it's not always the fun thing, the cool thing, but it's what will allow me to keep this up.

I am making the right choice.

Disibility

I have never thought of myself as someone with a disability.

I have always referred to it as, well, "it" or "getting sick" or "my illness".

Just not a disability.

I didn't really like that word, actually.

It made it sound like this was something I was going to have for the rest of my life. Something that was going to negatively impact things I wanted to do.

I guess I just thought of it as my own version of my furry little problem.

(A thousand bonus points if you get that reference.)

But now, here, I'm a student with disability. That's just the terminology the college uses. And somehow I'm okay with that. It just is. It's one word of many that can be used to describe whatever it is I have.

It might not be my first choice, but it's what works. It's also helping me see that yes, in some respects I do have a disability. There are people I need to meet with and paperwork I need to have in place to protect my right to an education.

Without those meetings and papers, my illness could and would stop me from getting the education I am not only paying for, but deserve. So yes, I guess that does make it a disability.

I Know It, and Yet Clearly I Don't

I sit at the long table, coffee cup in one hand, pen in the other. My bag is by my tapping feet. Occasionally I lean forward to jot an important point down. I love how smoothly the ink runs out. It makes my handwriting look nicer than it actually is.

I listen to the staff and to the students. They talk about accessibility and being your own advocate and communicating with professors.

I listen and nod and silently think that I know this stuff. I know how to be assertive. I've been doing it for the past four years.

I know how to talk to professors; I should, I've grown up with one.

I know there are things to learn. There will always be things to learn.

The only piece that strikes a cord with me is when one student talks about stigma and bringing up your disability with peers.

And then another student talks about educating people about what your disability is. Making sure they understand.

This is all I can think about. The making people understand. It feels like a huge weight has just appeared and set up camp squarely on my shoulders.

Because yes, I've been doing this for a while. I know I need to be up front with people and not pretend like it's going to magically go away now that I'm at college.

It's thinking about the people who don't believe me that scares me.

I can handle educating people. Most people need it, because they have no idea what half the words I'm spewing out mean.

What I don't handle is people not believing me. Whether they think I'm making it up, or that it's all in my head, or that I don't look sick, so therefore I'm not.

No amount of explaining complex medical terms can truly educate someone as to what it is like to live with this. To live in my body.

I'm scared that if I don't address it with people, they'll think I'm just reclusive and sleep a lot.

And that if I do address it, they won't understand, even after I've done my best to explain.

That my illness (I don't personally consider it a disability, but that's something else entirely) will come between me and other people.

I've dealt with these questions before; again, none of this is really new.

But it's not like I know it all, because I did somehow assume, or at least forget, that I will have to deal with this.

I am meeting a huge number of new people, who, once I start to spend time with, will notice something is different. Then I have to have the not overly comfortable talk. And hope that they not only believe me, but see past it. Add my illness to the end of a long list of things they know about me. And then keep on adding to that list.

the hospital

I'm not sure how to put this into words.

I will try.

I was sick.

Sick sick sick.

Hardly left the house, except to see doctors.

Then I went to the hospital.

For the first time, I was not a patient, but a caregiver.

This in and of itself was huge.

I felt like I was doing something important. That I was contributing to a greater whole.

I became part of a team.

The people on that floor took me in and gave me a place where I belonged.

I can't really describe what it's like or why I love it so much.

Which is hard, but at the same time, it makes it feel like my special place. One that's just for me.

These people gave me an education about what it is to work in a hospital, to work and have a family, to take care of other people,

They taught me the more tangible things as well.

The medical jargon that I now speak relatively fluently.

The procedures and surgeries and hourly checks. The IVs and wheelchairs and shots and blood.

All I can tell you is that I love it and will miss it more than I can possibly imagine.

Different

I used to know it. 

I used to be okay with it.

It was more than I ever thought I would be able to do and so it was perfect. 

And then something happened. 

Maybe I conveniently forgot, or maybe it was the rush of graduating high school. Maybe it was the energy surge that comes from no school.

It crept up on me, this truth I used to admit so freely.

It came up and smacked me in the face.

I’m not sure why I was so surprised. 

After all, I’ve been filling out forms and calling doctors, trying to make sure I have what I need.

But, without even thinking about it, maintaining that it would be normal.

Because why shouldn’t it be?

Now, I don’t like the idea.

It is what haunts me during the quiet moments late at night.

I don’t want to be different.

I don’t want accommodations.

In this, yes, I want to be like everyone else.

All Alright, We Are Young, and all the other song titles that relate to me at this moment

Tonight is prom. My senior prom. And I keep wondering how I got here.

I was here the whole time, but somehow I wasn't. I was too busy focused on me and getting better and sometimes just getting through the day to notice that the world was still going on around me.

That I kept accruing credits, enough to graduate, in fact.

Just because my world stopped didn't mean that the whole world halted.

I've been listening to Fun. (the band) a lot. All Alright, Carry On. It's the kind of music that makes me want to dance and sing and shout from the rooftops that yes, it is all alright.

So. Prom.

I have the dress. Nails are drying. A friend is coming over to do my hair and makeup. Going out to dinner. Taking pictures. And then....I don't really know what happens after that.

Whatever happens, happens.

I have no clue what that will be. I sure hope it'll be good.

But I'll be here, part of the crazy world, to experience it.

Complexities

I listen to the thudding of my heart for several minutes, marveling at my body's complexities.

I work to clear my mind, focusing solely on the blood pumping from my heart and on the air entering my lungs.

I work to push away the guilt, the fatigue, the aches.

The in and out slows.

I have control over my body.

Or sometimes I think I do. 

The blood pumping through my vessels, the exchange of oxygen and carbon dioxide taking place at a rate and scale I cannot comprehend.

Despite my relative ignorance, I work to control what I can.

I empty my mind, which in turn slows my breathing and heart rate.

At its roots, it is all connected.

The neurons and blood cells, the heart muscle and diaphragm.

I am in awe of its complexity.

My life, which I am fond of calling complicated, pales in comparison.

No matter how much I complain about it, my body is much more in sync, in control, aware of its purpose, than I will ever realize.

grateful

Cells are filled with organelles, all with specialized functions and definitions. All of which must be in my head. So I'm all happy and bouncy and smiley.

It's just what naturally happens when I talk about any medical stuff.

And the random thought just passes through my mind that if I hadn't gotten sick, I might not have discovered, or might not even have, this love for medicine. It was this brief thought that just came in and then left.

And then I sat there for a moment and actually thought about it and went and dragged that idea back onto center stage. Because really.

What if?

What if I hadn't found this thing that I'm so passionate about and that makes me so happy? Sure, I probably would have found it, or something else.

Eventually.

But no, this is the path I'm on. And this path, right at this moment, is me ending the day smiling. And I found myself feeling grateful for my illness. Which just sort of stopped me in my tracks.

I've never felt that before. Nothing even remotely close.

I've recognized how it has changed me, but acceptance is a far cry from grateful. I mean, why the hell should I be grateful for something that took my health and freedom and happiness for three-plus years? Thing I am just now starting to get back.

But there it is: grateful.

I love the path I am on right now.

And tonight I realized that my illness has given me the insight and compassion and passion to pursue a difficult and demanding career. It's given me empathy and sympathy. It's put me on a path that I love, that makes me so ridiculously happy. And for that, I'm grateful.

Problems

Every person deals with stuff. And the only person who really knows what that is, and how it is affecting them, is that person. It's great to pretend to walk in their shoes, or be a really good listener, but there's no way to really know. 

And when you are dealing with something hard or difficult, it's easy to feel like no one else gets you and that you are going through the hardest thing in the world and no one else can compare. Even when you remind yourself of the people living without basic needs being met. Like food and water and shelter. Or even the less basic needs that I am lucky enough to have. Like having a computer and internet and a blog where I can vent about my problems.

Anyhow.

We all have problems.

But seeing as how I'm really talking about my problems and perceptions (that's my new theory on life: that everything, everything depends on your perception), I might as well say "me" instead of "we".

Anyhow. 

All I really wanted to say with all this is that it's good for me to be reminded of other people's problems. It is so incredibly easy to get so wrapped up in my life and my issues that I forget that other people have problems too. That no matter what the problem looks like to the rest of the world, the feelings that we have as a result of it are just as real as people with other problems.

And now I've sort of lost track of what I was saying.

I think it's good for me to get out of my own head and life and just recognize what other people go through. To recognize that I'm not the only one who is good at getting dressed and going out and looking fine, just fine.

Quiet

I never thought of myself as a quiet person.

At least not until about a year ago.

I put myself in the category of quieter, but not shy, or introverted.

And maybe that was true, then.

Maybe I was an extrovert.

Life of the party.

I don’t know.

I don’t remember.

But even more, I wasn’t aware.

Now, though, I’m different.

Or maybe just my perception of myself has changed.

I love to talk and giggle with friends.

People I know.

I love to share my opinions in class.

Where it’s expected.

But I’m finding, realizing, that I don’t have much to say to people I don’t know.

I’ve always been bad at chitchat.

It’s not that I’m uncomfortable around people I don’t know.

It’s that I don’t have much to say to them.

(Or is it that I don’t know how to talk to them?)

And that can make things uncomfortable.

Deafening silence usually isn’t a great thing.

Although it can speak volumes.

Now, I think I’d call myself reserved.

I don’t see that as a problem, it just is.

New Year

This year is different.

The New Year is approaching, just as it always does. Time is still playing tricks on me, stretching out the days while I wait, shortening the days of no school.

But this year I'm not trying to shove the year behind me. I'm not getting nostalgic about the past, the things that have changed, the hope and possibility that the New Year brings.

It will be good to see a new year.

This doesn't mean I'm not looking forward to what it will bring (believe me, I am).

It doesn't mean I haven't changed in the past year. I could go on and on (and on) about what has changed. In many ways, it would be a list of improvements.

It means I'm not living in the past or for the future. It means I'm living in the present. The here and now.

Meditation

I breathe in for four beats. And then out. One. Two. Three. Four.

As my arms drift down to the floor, I can feel the tension draining out of me. I always hold it in my back, in these two spots that I can never reach without stretching.

I never take this time anymore.

It used to be part of my routine.

Every night, I would stretch and meditate and just be.

I would make a conscious effort to not think, to let it all go, and just be in that moment.

Somewhere along the way, I stopped.

My reading and writing and desire to curl up in bed and go to sleep took over.

All good things.

Which is why I didn't really notice.

I thought that if I was replacing one good thing with another, it shouldn't make a difference.

Not so.

There are so many good things, things that help me to stay centered, and to remember who I am. The writing and reading and sleeping are parts of this. But they were never able to replace the slow breathing and mindfulness of meditation.

Yesterday I needed it. To be quiet. To move slowly, but with purpose. I needed to recenter.

I don't know if it helped or not.

Because although I went to sleep early, I was awake for two hours during the night. And then awake an hour early.

I don't think it was because of the meditation. I hope not, because it feels like it could really help me.

I think I am stressed out, and worried, and unsure of what to do, or how to handle all of this.

I think it could have been worse, had I not taken the time to slow down last night.

But I'm not sure.

The Hospital

I think I've mentioned it in passing a couple of times. Really talked about it once.

Which is strange, because it means so much to me.

I think I haven't written about it because I didn't know how to put it into words. All that it means to me.

I want to do it justice.

For almost a year I've been volunteering every Saturday evening at the hospital.

I love it.

I have since my first shift.

It started out great because I was finally on the other side of things; a caregiver instead of a patient.

But it's turned into so much more than that.

It's a place where I feel safe and comfortable. I fit. I am known. I am part of a greater whole.

It is such a privilege to be part of such a dedicated group that works so hard to care for their patients.

And while the patients want nothing more than to go home, to escape the hospital, I'm the opposite.

The hospital is my escape.

From life and homework and procrastination.

To a place where I fit.

It just feels right.

***

And this thing is hospital related. It's actually really good news. And I promise I'll talk about it someday, when I've figured out what it means to me.

Letting Down

I am just starting to let down.

The stress and weight of school and all the things I must do still press on me, but I am working to let them go.

I don't need to worry. They will get done, or they won't. And I only have so much control over the outcome.

So I curled up on the couch and took a nap. I watched my cat watch the world outside. I admired my newly knitted hat. I read Inheritance.

Now I sit down to re-work an essay. I listen to music. I let the peace of a cold day seep into me. The knowledge that there is nowhere I have to go fills me. Nothing urgent must be attended to.

I sit. I drink my orange juice. The sound of the furnace lulls me into a tranquil state.

Finally.

I let it all go.

October

In ninth grade I got a cold about two months in to school. In October. And I never got better.

It always starts with a cold.

These are the facts.

It's October now.

I'm ready for October to be over.

Every time I miss a day of school I worry.

And wonder.

Trying not to be negative or morbid, but wondering.

Is history going to repeat itself?

Am I going to recover from this?

Or will I, once again, spend the next three years sick, at home?

It's October.

I'm ready for it to be over.

Ready to enter a new month, ready to leave the past behind.

Ready to start making new memories.

Ready to start living without being chained to the past.

Dance

Four years ago I bought a dress. I went with my best friend and our moms. We giggled and laughed and modeled, until we each found the dress. We spun and twirled and talked about earrings and bracelets and shoes.

I went home and showed my dad. I spun some more, and talked seriously about how it was such a good deal. (Really, it was.)

My mom and I went shopping again. For shoes. To match the dress. I fell in love with a black satiny pair that went perfectly with my dress. They were strappy and black and pretty and I loved them.

I tried them on with the dress. My parents oohed and aahed. I attempted to describe them for my friends. We were all bubbly and filled with excitement for our first high school dance.

Before I could buy a ticket or figure out what to do with my hair, I got sick.

There wasn't a dance or a dress or black strappy shoes. There were tears and doctors and home alone, not at the dance.

This year I put on that dress; it still fits. I put on those shoes. Carefully, around the injured toes. They still fit. I bought a ticket. I figured out how to do my hair. I wore earrings, but no necklaces or bracelets. I giggled and laughed and did make-up with friends. Five of us smashed into a bathroom meant for half a person.

Our parents showed up to take pictures. They oohed and aahed at all the right places.

Someone commented that it was our last dance. Everyone made sad noises about the last year. I kept quiet. It was my first dance.

I went. I danced. I sang.

I saw the best friend with whom I bought the dress. I did not dance or sing or speak to her.

I went to my first high school dance.

Disappearing

I'm home. Again. Third time this week. Three out of five is not good. It's not conducive to learning. And it's definitely not conducive to making friends.

Because for one, I disappear and reappear all the time. And so of course, people want to know where I went. So I tell them I wasn't feeling well, or was sick, or whatever. They know, in theory, about my illness. They asked up-front at the beginning of the year, and I told them. But it was quick. And not something any of us really wanted to linger on. No one wants to talk about being sick all the time, believe me.

But the reality is a lot harder to comprehend. I'm at school, looking fine, making jokes, getting almost straight As. And then I'm not there. And I say I'm sick, but they just see the words. They don't have the privilege of seeing me lying on the couch feeling terrible. Or how the numbers scramble when I look at my math homework and nothing makes sense.

I've always said that being fine just fine was my biggest problem. It makes it hard for people to see my illness. Therefore, it makes it hard for them to believe me. And even if they do believe me, to grasp how it permeates my life.

I don't want to talk about it all the time. I don't want it to be the main event in our friendship. But I know that it has to be more than it is. Otherwise I'll just become, again, the chick who disappears. With no explanation, no warning. And in the same way, I just reappear, looking and appearing just fine.