Running on hope, holding up the world

The holiday season serves as a lap marker for me, that pristine line on the track where time is measured and recorded, where, at the end of the race, the ribbon snaps against the heaving torso of the runner, his arms splayed in euphoric victory, holding up the world.

We expect the race to end because that’s what races do.

*****

Five years ago, my brother began to swell. Fluid filled him from the bottom up, an army of ounces colonizing territory after territory in

his feet, his ankles, his calves,

his thighs, his waste, his abdomen, his chest.

Before he entered the hospital the first time, he visited me at my apartment, a sort of willful last act of normalcy and wellness. I remember that we sat on the floor because that was the only place comfortable enough for the sixty pounds of fluid that had inflated his trim, athletic frame. I don’t remember what we talked about that morning, just that we spent the time together.

That was before we knew what was happening. Before I knew the starting gun had fired.

In the weeks that followed, so did the tests and the doctors and the questions until, ultimately, our family lexicon had no choice but to admit cirrhosis, terminal, and transplant into membership. He spent four days in the hospital that first time and all I could do was try to cheer him up. I wheeled around his room in his wheelchair, crashing clownishly into the vinyl visitor chairs and tray table at every pivot. When he slept, I watched him, my eyes squinted in the flannel light of the over-the-sink fluorescent, wondering why he had been drafted for this particular marathon, while I had been spared.

This is my brother’s story and I respect his privacy. I can talk about the facts, like how the specialist projected a transplant five years out from diagnosis. I can talk about the typical progression of cirrhosis, that before the liver fails, the kidneys fail and the risk of heart attack and cancer balloons. I can tell you what any medical textbook will tell you and I can tell you that we wait.

We wait for him to get sick enough to be eligible for a new liver.

We wait for the ribbon to be stretched across the track, while he completes his unchosen race.

Beyond those things, I can talk only about my own feelings of helplessness, guilt, and terror. I try to be rational and optimistic. I believe in the law of attraction and that positive thinking begets health and prosperity. But still, these dark, worried feelings sneak up on me, hooding me from behind and drawing the cord tight around my neck.

This is my little brother, the one whose bunk was below mine. The one who stood on tiptoes to peek over the top-bunk railing that same morning every year whispering ’Santa came!’, and ‘Hurry up!’ and–

DAMMIT!! WHY HIM?!!

I’ve said I would take it from him in a heartbeat, that for all the years he’s protected me, now it’s my turn. I’ve asked, ‘why not me?’

The thing is, I already know.

I know why him and not me, if it had to be either of us. He’s taught me why these past five years.

*****

My little brother has endured more these past five years than I’ve endured in thirty-two. He’s endured footlong needles draining liters from his abdomen. He’s endured CT scans and endoscopies and failing diuretics. He’s endured pain that lays him out, the setting aside of plans, and uncertainty of existential proportions.

He’s endured elements that I would stand no chance of surviving and, still, he keeps running the laps, ticking the line with each pass, never stopping or crumpling to the grass, always hoping that the next line will be the ribbon.

Despite the loitering reaper with his red carpet and engraved invitations, my little brother confounds his doctors. Five years out from diagnosis and he’s not much closer to needing a transplant than he was five years ago. Somehow, its progression has slowed.

Of course the disease within him is real. Of course he struggles through it daily. Of course the slowing of the inevitable feels bittersweet at times.

But none of these things take from him the hope of savoring his first post-op beer, of returning to school, finding a whipsmart, loving wife, or hoisting his future children onto his shoulders at the zoo. My brother breathes hope and refuels on hope.

Whether he feels it’s a choice or not, my brother runs on hope.

*****

This time of year always stirs what’s magical to life. One of our traditions growing up was to set out our favorite stuffed animals so that Santa could make them come alive while he unpacked his sack of treasures under our tree. I remember how excited my brother and I felt knowing that, for one night, Bumble-lion and Basketball Jones would be alive.

It’s the same feeling that stirs in me now, when I’m able to undo the hood enough to see that what my brother embodies is not disease, but health.

The holiday season serves as a lap marker for me, that pristine line that marks not just one more year of my brother’s life, but one more year of his living.

Eventually, the race will end, as all races do. I will be there at the ribbon when the time comes, his relief runner, his cheerleader, his sister, whoever he needs me to be –

raising my arms as he raises his, together, holding up the world.

********************

This post was inspired by the Blog Nosh Magazine blog carnival honoring the Tide Loads of Hope program. When I told Jenn I wanted to write a post about hope, our conversation went like this:

Erika: So, you know the Tide Loads of Hope program?

Jenn: Of course I do.

Erika: What is it then?

Jenn: It’s when you buy the Tide with the whatever color cap and they do somebody’s laundry.

Close enough. The Tide Loads of Hope program is a a mobile laundromat offering laundry services to families affected by disasters. Read more stories of hope and, better yet, share your own story of hope over at BlogNosh.

Oh, and buy a T-shirt while you’re at it! They’re not self-cleaning, but the proceeds go to help people in survival. And because it’s about more than loads of laundry. It’s about hope.

Go get better acquainted with Erika from Be Gay About It. Her blog is an articulate discussion of life, family, politics, and equality. Erika not only uses her blog to highlight her life, but also to “demystify what it means to be gay (read: YAWN! normal).“ This beautiful essay about her brother can be read here, including the original comments. As you get to know Erika, you’ll definitely want to subscribe to her blog and follow her on Twitter!

Loads of Hope for the Holidays

Share your own stories of hope, along with Blog Nosh Magazine, Velveteen Mind, and a gathering of inspiring bloggers, and enter your own post link in the blog carnival below. Explore featured bloggers as well as three featured posts selected from carnival participants listed in the linky (that could be you!).

Learn more about how you can extend hope to families affected by disasters by visiting http://tideloadsofhope.com

Blog carnival hosted by Blog Nosh Magazine, sponsored by Tide Loads of Hope.