Friday, August 31, 2012


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.

Thursday, August 30, 2012

one sentence paragraphs, among other things

I don't know when I started changing how I wrote.

But at some point I made the unconscious decison that I liked to write in short paragraphs. As in paragraphs that are one sentence long. That's how my brain works; I think every little thought deserves to be special and get its own paragraph. But I also like how it reads because then it makes each thought, each sentence, important.

However, this is not the college style of writing.

Nor was it the high school style of writing.

And I managed to display this lovely skill of mine on the first college homework assignment.



In other news, I'm slightly, okay, a lot, afraid of my Bio class now. After one class.

Again, awesome.

There was just so much. 

So much material, so many pictures that don't fit nicely into my notes, so many new procedures, so much responsibility, so much "figure it out yourself". I always have liked that style much more than the "let me spoon feed you" approach, but right at this moment? My mind is spinning. I'm scared and overwhelmed.

Also, did I mention the classes are three hours long?

If you weren't aware, that's a really, really long time.


It really is enjoyable to write with terrible grammar and syntax and whatever-it's-called and not care and be able to call it artistic expression.

Tuesday, August 28, 2012

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.

Monday, August 27, 2012


I'm here!

And not only here as in still alive, but here as in here at college.

As in I am soon to be spending the night in my room for the third night.

As in all the upper classmen arrive tomorrow and it's a little scary.

Because I feel like I'm just starting to get the hang of things, and then tomorrow, everything's going to change. Again.

And classes haven't even started.

That's a whole new ballgame, I know.

As was registering for them.

I sit here typing this, at my desk that is next to my dresser, both of which are tucked under my bed. My desk is messy. Or at least messy in my book. I know that doesn't always translate to messy in other people's worlds.

My light is on, hurting my eyes a little bit.

The room is quiet, except for some people coming and going out in the hall. Not in a loud obnoxious way, but in a other people live here sort of way.

My alarm is set late, all things considered, for tomorrow morning.

I will try to sleep, even though I will probably sacrifice breakfast in the process.

And then I will fill the hours until 2, or whenever that one meeting that that one paper said I needed to go to.

Then I will ask directions to this new building, because as much as I feel like an experienced college student walking across campus to the dining hall, I know I'm not.

After all, I'm just a first year. And it's just my third day.

Monday, August 20, 2012

a cardboard sign

I sit at the light, sipping my coffee, my blinker impatiently reminding me that it's time to go.

There is a man to my right. Standing on the curb, holding a cardboard sign. Saying that he is a homeless vet. Asking for kindness. Asking me, WWJD?

I sit in my air-conditioned car, headed for home. Groceries to stock my fridge. A $2 dollar coffee in hand.

I don't know this man's story.

I don't know where he comes from or if he truly has nothing to go to.

I hate that when we were traveling, mostly in India and South Africa, we were told to never look beggars in the eye. Because this would encourage them.

Practical advice? Yes. Heartbreaking? Yes.

By not looking people in the eye, I am taking away their humanity. I am denying them the right to be recognized and their worth as human beings.

I hate that whenever I see someone standing on the corner, this advice flashes through my mind.

And that sometimes I heed it.

I don't want to acknowledge harsh truths, to literally look them in the eye.

It's much easier to continue my easy, comfortable, sure lifestyle in ignorance.

I don't want to be ignorant. 

I don't have the solution.

I just know I don't want to walk through this world with blinders on.

Saturday, August 18, 2012

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.

Friday, August 17, 2012

where to start?

I don't know where to start.

Last night was a late night.

Not so much with the sleep, but lots of packing. Organizing. List writing.

As was this morning.

My last fish is gone. His new home is a first grader classroom. Where I am sure there will be debates over whether he is, in fact, a he.

My room is really quiet. No filter running.

I can't bring myself to take my posters off the walls.

Not yet.

I can't bring myself to think about the fact that my friends are spreading all over the country.

That soon I'll be in a whole new state.

I can't believe how fast this is all happening.

All at once.

I want to be in that place of "I can't wait!!"

I want to be excited and ready and jumping out of my skin to leave.

I still seem to be stuck in shock.

Disbelief and sadness.

What have I gotten myself into?

Sunday, August 12, 2012

Crisis of Blogging

I guess you could call it a crisis of blogging, this thing I'm having.

I don't want to write just for the sake of writing. I don't want this place to become some place I have to come and have to write for.

I also feel an obligation to my readers. The amazing people who have supported me and written to me and encouraged me. The ones who, even though we've never met in person, I have included in my extended family.

I have ideas. I have things I want to say.

I just have no drive or desire to come here to share them.

I came up with this theory the other day. After getting home from a trip and wanting to come here and share where I'd been and what I'd done and all the pictures I'd taken. I wondered if this was something I did to reassure myself, or to work things out (I know this is true. I only said a hundred times.) and that now I go out and live and work it out as I go.

I have more people in my life, physically, day to day. I work things out with them. They have become my sounding board.

Except I'm realizing as I write this that I still have stuff to work out. Obviously.

And I'm still pretty fond of psychoanalyzing myself.

I don't know where I'm going with this.

Just wanted to let you know what's going on.

Except I didn't really say anything, did I.