Tuesday, March 18, 2014

Appearing Helpless (A Pledge To Fight)

I got up today

Or didn't.

First I fell down today

But as the black was driven out by the warm light of sunrise, I picked myself back up again, and mused to myself: "Tuesday, take two".

I rolled to the right,

Then back to the left.

I seem to have forgotten which way the bathroom is, 

then forgot that I kept my clothing in my bedroom, not the bathroom.

"Tuesday, take three".

Merrily we roll down the hall,

To fetch the needles and the morning medications,

Only to climb upon the couch;

Forgetting it was time to be awake.

("awake, awake, O sleeper awake!" Issac whispers in my ear)


Take four.


Maybe it is, or is not obvious, but I am struggling in multiple ways lately. Happily, a lot of the medical emergency crisis stage now seems to have drifted to merely high alert, keeping me hypervigilent, borrowing hours of sleep from my nights with unfulfilled promise to make it up later, with interest.

I want to introduce you to a friend I made back in December

This is Sunny...and Sunny is my Tubie Friend. (This photo was taken in December, hence the huge sweater).

What's so special about this little bear? you may ask. To most, these little miracles are intended for children who are about to have tubes placed or have one already. Many can understand this for children. It's hard to be a little kid and have to deal with being sick as well.

But what of me? I am just over a quarter of a century old. Shouldn't I be able to just deal with the hand I am dealt?

Sunny has a G tube, and back when I got him, that's all I had at the moment as well.

This was taken right before surgery to have my G tube site moved and a J tube reinserted.

I would not have been able to have communicated to anyone the fact that while tubes were not new to me at all, there was something very comforting about having something so common and basic as a teddy bear with the same attachments did provide me comfort as well.

Even at the age of 26.

I didn't realize how lonely I actually felt.

What else is special about Sunny?

Sunny also has a central line

...and now, once again and for the remainder...so do I.

When I came home 25 days ago from a rather rough inpatient stay, it did not hit me that I was expected to keep running TPN and care for my line at home for the future as it is now. It didn't hit me until about a week ago. In that week, a lot of the strength that anyone everyone thinks that I have was ground to sheer nothingness. I felt that I had no security, and in these times I found refuge from the storm of my own sobbing in a small yellow bear, who has some of the same spare parts as me.

In an instant, in seeing this innocent little bear, as if I tripped a time rift, I found a sense of comfort I could not find in the words of those who are even closest to me.

There has been many a quiet moment in which sitting in a vast silence, allowing myself to for once rest, with Sunny at my side helped more than perhaps one would find reasonable from a small stuffed animal for someone who is a young adult.

Yet here it is, in my journey where I am stationed:

You may witness a small girl, not sure of her age at all. If you ask and guess too low she will correct you with an embarrassed grin. She cannot stand, nor can she walk, and depends on a tiny wheelchair to get from place to place. There isn't much meat on her bones, and she tires easy. 

But she won't grant a push from you, for she has something to prove to no one but herself.

To you and many more, she appears helpless.

Sometimes, strength isn't in the size of the bicep (or any muscle for that matter). Sometimes understanding what all the body as a whole has been put through, yet still able to retain some level of function that is surprising not only to you, but to also the soul that inhabits the body under siege.

A lot would loot at an arm like this, and not think much of it. Looks normal. Looks small. Looks weird with the purple nonsense dangling from the side, a bit awkward to be honest.

Smile, smile, because you're not sure what to say...

If the wind picked up too much in one direction that twig may well snap in half.

To you and to her medical team, this girl appears on the whole rather helpless.

This is the surprise that finds you in the midst of things that none of us can understand. This is the result of speaking up, admitting you cannot fight this worry off alone. This is a small part of a positive note of the internet called social networking, where many people like you and me meet each other. We take turns helping each other up when we've fallen, and receiving the same encouragement and will to press forth from those who understand you.

In the world of medical supplies, it does best to have a little extra rather than carefully, with some level of dread, count out the last of each supply. Maybe to some this doesn't look like much. Looks like the hospital barfed on my floor, right? To me, these are items extend the life of my central line, these items help me to take care of me with creative insight.

Surly with health so tenuous, this girl is helpless?


And the answer to that careful question is a resounding "NO"

I took this today. I took this today, sitting up, because I finally have the energy to do that. I took this with a bit of makeup on, just a bit in the right places (in this case less is more) because I finally had interest enough to do so. I took this today, because even though I have certain limitations that I don't care for, even though I generally feel physically unattractive due to how think I've become, and even though I have been told over and over that I appear helpless, frail, fragile, breakable, in eminent danger and so much more that is not what I am content for my life to be.

Today, I wore green.

Green represents disorders of the gastrointestinal system.

Green represents mitochondtrial disease.

Green represents children's mental health awareness in Missouri. (And what of the other states? Would you be so good as to go green with Missouri too?)

Green means standing your ground even if it means you have to sit.

Green means taking the best of a scary situation and pushing past uncertainty.

Green means a new challenge daily, and agreeing to meet with it.

Green means fight.

Green means a daily, hourly, moment to moment commitment to fight for this life, that you and I are worth.

Green means appearing helpless, but fooling them all.

Take this moment right now and join me. Get up. GET UP, GET UP NOW! All of our walks differ, but for all of us we can shift our lives so that, while appearing helpless, even in times of our greatest need, our very souls can prove we are not. We all  have a purpose here.

We all matter.

And for those of us that may appear helpless...

...perhaps it starts with us to give this uncertain world a new point of view to ponder, to garner their own strength, and to carry on.

It starts with you.

It starts with us.

Edit: If your child or younger loved one is new to tube or IV feeding, please visit the Tubie Friends website. Tubie Friends is a non profit organization dedicated to providing comfort to kids -- and their loved ones -- navigate better into the new, uncharted territory of nutritional support.

1 comment:

  1. I've been trying to get a tube bear for awhile, I know that sounds childish, but it isn't just because I wanted it, but I think it might be something to help Damien. He is really having a hard time understanding why mommy has to go to the doctor all the time and stay, so we want to (always have) explained things to him in an age appropriate way, and he loves his teddy bears, so I thought finding a tubie one might be helpful. Excellent post, you look beautiful in your picture...it is always a blessing to me when the Lord helps me find the strength that I didn't know I had deep down inside of me.