There is a Parade! and the sick are not invited.

A brother's love in the face of chronic illness.

Life is for the living!

(For those too sick to join in, there is a viewing room with chairs and a small window just off the route by the ‘Spectators Welcome’ sign)

Enjoy the parade! And don’t forget to cheer for the ones who can still dance!

I hesitate even to write this, as it feels to my core like stolen valor or cosplay. Secondary suffering, diluted by the primary sieve. A pat on my own back. Kudos for enduring the spillover of another’s hell.

I have been saddled, by fault only of our Dear Erratic World, with a low-pitched rolling ache, which undergirds all my days. For twelve years I have walked beside its hum. I have held high my joys in the face of it, but it has implored I lower my arms. I have turned my head away from it, covered my ears and shouted gratitudes, but the lists all sound like her. So, like a mule hitched to a broken carriage, I drag her limp and leadened shell behind me. Sharing as much of my life as she can stomach before begging that we rest.

I could unfasten the buckles. I could leave her where she likes– somewhere with a window facing toward a lake, and a coffee machine for morning, and a freezer for the cold-packs, the medicines, the other medicines.

But she is my little sister. And I am not a monster.

There is a time in all our lives when we must accept the truth of things: There is beauty in this world, but this world is not beautiful. The billboards we read as children, selling us on the great adventures that await at every exit, are nothing more than tactics to keep us buying gas.

The healthy are the market. The healthy are the patrons. The healthy are permitted entrance to a wonderful wonderful playground. But the sick are not invited, and the walls are so damn high. The peering over is the illness as much as the illness itself.

To be forced to watch a little girl become a woman within the confines of her childhood bedroom is the most creative torture love has ever devised. It is love that I blame for the aching. It is love that I hate for the distance it’s placed between life and my best friend.

But what a drug life is! to awake in the morning and smile with the rising of yet another sun. To learn, through years of stumbling practice, how to dance this living alongside all the others practicing the very same steps. How do I pause the music? How do I stop the time so she can catch us?

The speakers are not loud enough to penetrate hospital curtains. The ears behind them are clogged anyway.

So what am I to do? Every inch toward every exit, every adventure propositioned has exacerbated the bifurcation. I am allowed. No. I am encouraged. No. I am obligated to indulge in life, as life has been placed upon my plate. But to eat at the same table as one whose mouth has been sewn shut? This is not permissible for a brother. This is not permissible for anyone.

So far, though, everyone who has played ‘anyone’ in her life has crossed that line– has made her the audience to their gorging. The living don their blinders so as not to sully the view of their bountiful feast with the likes of the sick. Like stepping over the homeless to catch the curtains before they’re drawn on Broadway. The contradiction is as invisible as the body on the street.

The sacred interpretation is wrong. It has been made clear, time and time again– The Good Samaritan does not exist without the blood tie. The Good Samaritan performs a duty, not a charity. The Good Samaritan is not a quality. It is a thankless pursuit. A sacrifice made only by those who insist their life be cut like cake and passed to those who need a momentary sweetness to fortify the levees.

But the cake is finite. And the hell is eternal. I battle with my own impatience. I bicker with red lights. I am in the world, at yet another exit, knowing full-well that my red lights do turn green, and refusing to accept that hers do not. Even as her brother, even as her closest friend, I cannot comprehend such masterful patience.

“You don’t understand”

has become her mantra. And she is correct. I don’t. Understand.

What does life look like through a window? What must it be to watch the parade go by? To watch your brother get married in the backyard of a hospice home just to ensure your attendance? To try so hard to dance your fading heart out for one perfect night, (his perfect night), only to welcome the unavoidable toll of months-long agony which you already know awaits you?

There is no moving out of a desert. There is only the mirage– conceived by family, and described, in thorough hopeful detail, to the blind.

My sister is dying. And I, in direct opposition, am living. There is no therapy for that.

I look to my mentors, my friends, who have endured their losses. I beg to understand the fallout. But grief of cessation and grief of the interminable are not neighbors.

So I dance because I can dance. I laugh because I must laugh. I read every billboard and turn off every exit. But I do not unfasten the buckles. I need the carriage to take back my cake to the starving girl in the viewing room. In the hopes that I can fool her, for even a second, that shadows are as nutritious as life.

This poem is about that. And the following song is about that too.

---

Sitting with a Cup

I come upon a broken cup,
shards strewn about the floor.
“I can mend you.” I say.
“I am beyond mending.” She replies.
I count the fragments scattered at her feet
and think perhaps it is true.
“Is there anything else I can do?”
“Sit with me.” Says the cup.
“It is fine to be broken so long as I am not alone.”

-M.R.

---

SONG: This Kind of Life.

Lyrics:

Would you mind telling me the temperature?

It looks so much warmer

than it should be in December.

I can almost feel it on my skin.

The way that I did

back when I lived.

Would you remind me the year?

It’s hard to keep track

when I’m always sitting here.

I swear I don’t know where it’s gone.

All of that living that I should have done.

I don’t want to try

to keep on keeping on

for this kind of life.

Watching from the side.

Waving hello

at the people passing by.

What does it feel like to run?

To move your body

just for the fun.

I used to dance in the rain.

But now the weather dictates the pain.

I hear that your building a home.

It’s so nice to see

How much you have grown.

What i’d give to go round again

in a stronger body

and live life how its meant.

‘cause I don’t want to try

to keep on keeping on

for this kind of life.

Watching from the side

Resigned to cheer for the people going by.

-M.R.