to the chronically ill kid

To me.

Because that kid is still me, even when I am silent.

The other day I sat down and reread all of my old blog posts–it was quite painful, I must say, but also quite beautiful, because I saw the difference.

I noticed that my illness is no longer the first thing I feel I need to tell people about anymore.

I don’t feel the need to explain myself as much as I used to.

I see all the ways I’m not the same person I was.

But, I also see all the ways that I still am.

All the ways I remain the same, but have merely hidden.

Because, even when I don’t mention it, I am still sick.

It may not be the entirety of my identity like it once was, but it remains a part of what makes me, me.

A part of my identity that will never really be gone.

Which, as I’ve said before, isn’t necessarily a bad thing.

This illness has, in a big way, shaped me into all that I am, and all that I will be.

It’s a beautiful thing, really, but it’s also quite hard, because others can’t see the way in which this illness makes me feel.

So they forget.

And they assume you have too.

But I have not.

And I cannot.

I have purposely tried to veer away from writing about my illness in recent blogs, mainly because of how much it encompassed the majority of my earlier writings. I didn’t necessarily want that to be all that I am, but I’ve also realized that I can’t run away from the fact that it is a lot of who I am.

The fact of the matter hasn’t changed, but my perspective has.

And that’s why I want to write this blog differently.

I want to write this with a different weight than the fifteen year old me wrote all those earlier blogs with.

But, I also want you to know that there is still a weight.

(Apologies for the long preface, now allow me to step onto my soapbox.)

When you are a sick kid, you look at things differently.

You see the world through a different lens.

And while it’s necessary, it makes finding balance hard.

It’s as if there’s an added weight on top of the weight of the world; the weight being, “how to live in a world that you are not fully equipped to live in.”

Every thought, decision, and feeling has an additional layer of “ifs” “ands” and “buts”.

For example, the thought of the future.

I’m about to graduate high school, and I have to think about where I’m going to go from here.

College being the most ideal for me, but on top of all obvious factors college alone brings to the table–money, education, distance, etc.–I also have to think about many additional things… things that I’m willing to bet the average college-goer doesn’t tend to think twice about.

What floods my mind at the thought of college are things like: What’s going to happen if I move too far away from my doctors? What if my dorm has mold and other mycotoxins in it that my body can’t handle? How is my sick body going to have the amount of energy needed to live on my own and provide for myself, while also going to school full time? And God forbid I think about what happens if I have a flare up while I’m in college…what do I do then? What if I get so sick that I become bedridden again? How will I ever be able to get a degree?

But, when I tell people that I plan to go to college next year, and that I haven’t quite decided what it will look like yet, they don’t see that part of the story. I don’t tell them.

Because they don’t entirely need to know it.

But I do.

I am the one that inevitably needs to figure it out.

And if I do decide to go to college next fall, I have to then figure out what I'm going to do after.

Obviously, I will then have a degree and an idea of where I’d like to work–I'm really not worried about that, but what I am worried about is how I will be able to work that job and use that degree. How I will be able to be all that I dream to be while I'm still living in this failing body.

Because I have dreams now.

Big dreams.

Bigger than I ever thought I would.

When I think about my future, I now see more than just my name on a gravestone.

I see a life.

I see a family, and a house–one with lots of windows, a wrap around porch, and a yard big enough for a wiffle ball field.

I see a purpose, I have a dream. I see a life where my work is what I love. A life where I can be to others that person that I always needed. I see myself writing books, and helping others. I see myself teaching them all that I wish I hadn’t had to teach myself.

When I think about my life in a year from now, I no longer see a hospital bed.

I have a dream for my future.

Because this past year, it has finally felt possible.

For the first time in a long time.

At least, for the most part.

Because some days, all I can think is, “How will I ever pull this off?”

For no reason besides the fact that I am still sick.

And I never envisioned living out these dreams in the same failing body I write these blogs in.

Because how can I be the glue if I’m no longer sticky?

I want to hold it all together, but I can’t help but wonder if I will ever really be able to.

I have no idea what could happen in these next five years, I could be fully healed, and this all could be merely a piece of my past…

But I could also still be sick.

I could actually be even worse.

Not to stack all the cards up against me already, but I feel as though I have to be realistic, as well.

Along with all these thoughts about the future, I still have to think about how to get through right now.

Which tends to bring on just as many challenges, if not more.

Because I actually have to live the “right now,” right now.

And as much of a blessing it is to be where I am right now, it’s also very hard to remain here.

I have made so much progress in the past two years.

But all this progress that I have worked so incredibly hard for could be stripped away from me with the blink of an eye.

And the thought of that reality is so terrifying.

Because I am living, now.

Maybe not living in the way I always thought I’d be living, but I'm here.

I'm out of bed, I’m finishing school, I’m making bigger plans…

I'm here.

Dying is no longer at the forefront of my mind.

I no longer think about it as much as I used to.

But sometimes, I still do.

And it’s terrifying.

Much more terrifying than it was two years ago.

Because now I have so much to lose.

Before, I didn’t.

And therefore I didn’t care whether I lived or died.

Not that I ever wanted to die,

but I knew I wasn’t really living.

So death… it really didn’t seem so bad.

My faith was strong, and my body weak

So, death seemed like the path of least resistance to me.

But now, everything’s changed.

I want to be everything that I can be, here, on this Earth.

I want to grow up, I want to start a family, I want to build a life.

I want to see my brothers get married. I want to see my parents become grandparents. I want to see my friends live out their dreams.

I want to be here.

God has blessed me with the best people I could have ever asked for this past year…

I can't help but want to stick around a while and see how each of our lives play out.

And I can’t do that from anywhere else but here.

I believe I’m meant to be here.

Maybe, I don't know.

Because yes, I am still sick.

And this is still my life.

Each day I spend battling against this body of mine.

And each day I thank God for the battle.

Because each day I continue to fight, is another day I get to spend on this Earth.

Another day I get to make a difference, and another day I get to be all that I am called to be.

The road to recovery is a long one…

Filled with plenty of twists and turns.

It seems as though I'm at a crossroads right now, and I have no idea which path to choose.

But I know whichever road I go down,

God will be at the other end.

“Not so sweet 16”

As a closing thought, I figured I may as well add in an excerpt from a blog I wrote nearly two years ago, on my 16th birthday:

At least I can write. Yes, I can still write. I am glad I can write. I can’t wait until I’m 18. Hopefully my writing means something by then. Hopefully I can help people by then. Hopefully I am out of bed by then. Well actually, maybe I should aim for 20.

20 sounds nice. Maybe I’ll have a book out by then. Maybe I’ll still be in bed. Maybe I’ll be even more sick. I hope I can have a sweet 20.

One of these days. One of these days I’ll turn a year older, and it will feel sweet. Not today that is. Definitely. Not today.

Rereading this one felt like a stab in the heart.

I am about to turn 18, but I’m not sure how sweet this birthday will be either.

I don’t feel as though it’s set up to be all that 16 year old me writing that thought it would be.

Not that it has to be, and not that I even really want it to be.

I want this birthday, this year, to be all that it’s meant to be.

And nothing more.

I’m going to just let it be.

*Steps off soapbox*