Narcolepsy, surgery, and more tests.

Wednesday, February 3, 2016
I keep thinking life is going to be better. That this is the last major medical issue we're going to have. But it never is. Nearly 4 years and over 50,000 dollars out of pocket (w/ insurance ((medical is where the majority of my author income goes)). All five members of my family.

Nonossifying fibroma for my middle child = 5 surgeries (2 upcoming), 2 broken legs, over a week in the hospital, months of wheelchairs and walkers. And now the outside of his right femur is growing faster than the inside, which throws all his joints out of alignment and will lead to arthritis and blown knees if we don't fix it.

My dislocated/broken ankle, surgery, complications. I was diagnosed with interstitial cystitis this fall (which is lifelong, painful, with a restrictive diet). I've started struggling with depression too.

My oldest son has been struggling with staying awake (without medication, he sleeps 20 hours a day and spends the other 4 hours falling down and being paralized). We went through testing for tumors and seizures before he was diagnosed with a severe form of narcolepsy with cataplexy yesterday. Narcolepsy is feeling-like-you-haven't-slept-in-two-days exhausted. It's being asleep when you're awake and awake when you're asleep. Cataplexy is falling down when you laugh or cry or get annoyed. Or simply falling down, your body frozen though your mind isn't. It's fear and frustration all lashing out in anger because you want but can't.

My husband just had some testing done and it came back abnormal, which means more testing for him as well.

And because I write fiction, I'm going to show you how I feel instead of tell you.

Falling into Blackness

A bitter wind whips down from the glaciers capping the wicked mountain. I glance back at the valley behind us, so green it hurts my eyes. I want to go back there. My throat aches with the want. But even as I watch, the gentle meadow begins to crumble, falling into blackness. Those who were too sick or injured to carry on fall with it, an almost relieved look on their faces.

There is only ever forward. Always forward. To stop moving is death. Determined, I scramble up the sharp rocks that bruise the soles of my feet through my ragged shoesBehind me, I hear a cry. One of my sons, Connor, has fallen. "Hurry," I call back to him. "We are already falling behind."

He tries to stand and his scream rises up, echoing off the mountain face. Some people cast concerned glances our way. Others move on without a backwards glance. I check the blackness. The valley is gone, the edges of the mountain swallowed up. I rush back, past my other two children, urging them to keep going. Except for the grimace of pain, Connor looks fine. I try to help him stand, but he falls back, screaming again.

I glance back at my husband, but he's already struggling, barely keeping up, and he won't meet my eyes. I grab my son, lifting him gently in my arms, and start up again. The trail is steep and everything burns--my legs, my arms, my heart.

I take great, gulping breaths and on the exhale encourage my children to keep up. Call back to my husband to hurry before the darkness takes him.

And then the ground beneath my feet opens up. Connor and I both tumble down. I land on top of him. He sobs and screams in pain--screams that make the dark hole that has swallowed us both tremble as if it might collapse any second. I wrap my arms around him, trying to sooth his cries before we are both overcome. We cry for a time, arms wrapped around each other, grief and hopelessness thick as the dark.

From above, I hear a many voices call to us. A rope is thrown down. A man has a brace for my son's leg--he is one of the healers. He will trade a lock of my hair for it. His wife is angry--all the healers have wives and they are always angry. She doesn't want to help us. We argue bitterly, the cold and the darkness seeping into our hearts and darkening our eyes.

Finally, the man agrees to help us for two locks of hair and his wife is satisfied. I feel a sharp tug on my head and there is two snipping sounds. In the way of the healers, the hair is gone--leaving a large bald spot on the left side of my head. But hair is only vanity anyway so I pretend it doesn't matter.

The brace is thrown down to us and I wrap it around Connor's leg. Only when I have it on do I realize that straps are worn, the metal joints sticking out of the dirty cloth. But there is no time to find something better. The darkness is coming.

I help my son grab the rope with his small hands. I brace myself behind him and push as he pulls. Hands tug on the rope, hauling us up. The rocks are sharp, I can feel them wearing away at the callouses on my skin, one layer at a time until my palms are raw. We finally reach the top, my husband's hand grasps mine. I give one last push on my son. He braces his leg and pulls himself up.

There is a snapping sound. Suddenly we are falling, landing again, only this time my son lands on top of me. A sharp rock bruises my back. For a time, there is only pain. When I glance back up, the light looks so far away. It is his brace that has broken, causing our fall. I want to shake the man who gave it to us--I want my hair back. But he is already gone and so is my hair.

My arms and legs are shaking. I'm not sure I can make another climb. There are more faces at the top of the hole, encouraging us. Telling us we can make it, though they are so far away sometimes it's hard to hear them. It's hard to believe them.

Another face looks down. An older woman with an unsmiling face and a colorless cardigan. "Just leave them," she says. "They're not worth the effort."

Anger rises in my chest like a coal, snuffing out some of the darkness and adding heat to my freezing limbs.

Another man appears. He has a better brace. A newer brace. This man's wife is not a stingy as the first one. I gladly give him two more locks of hair, this time from the top of my head. Again, we climb. I am not as strong as I was the first time. Nor is my son. The climb takes longer.

When we finally reach the top, I collapse, feeling the sun for the first time in days. I glance down the mountain to find the darkness is dangerously close. The five of us hurry along. Sometimes complete strangers help us. Sometimes the people I thought loved us turn away.

We are falling behind. So far behind. Desperate to catch up, we chose another path, hoping it will allow us to climb faster. There is a steep cliff, but beyond that the way looks easy. We scramble up the face, pushing our children ahead of us. We reach the top just before the darkness. Ahead of me, Connor slips, pushing us both back. We tumble for a bit, I barely manage to grab hold of a outcropping. I feel my food slide into the inky darkness, feel it staining my soul with shadows. My hand whips out, snatching Connor just before he falls forward. But the heavy brace drags his leg forward, and his foot too is stained with shadows.

A sharp pain radiates where the shadows touched us. The skin is numb, the limb heavy. But there isn't time to be injured. We have to run.

I push hard, driving us both forward. I push through the pain and the numbness and the heaviness, dragging him behind me, though he begs me to leave him behind. We finally reach the top of the cliff and my husband hauls us both up.

Then we are running again.

When we are finally out of danger, we drop down, exhausted. Connor flops onto his back, his eyes dead and angry, his foot bleeding. Mine is bleeding too, the skin cracked and weeping like overcooked meat.

I glance around at this new place. There are people here too, though I know none of them. A few offer us some food. When we can, we start climbing again. The path is a little easier, so we can keep up. Connor and I don't talk about the darkness, the way is infects our blood. It's hard to see color through the shadows it casts before our eyes. It's hard to feel the sunlight against our freezing skin.

He grows sullen and angry. For a time I carry him again. The older woman with the cardigan glares at him. "Just leave him behind," she says. "He's not worth saving."

I want to throw her to the darkness, so she knows, so she understands. But I don't. Eventually, our wounds stop bleeding. I think maybe we might make it over the mountain. Perhaps there is something better on the other side for us. Another meadow, perhaps. A lake with sparkling turquoise waters.

But then the pain starts in my belly. Always in the same place. A dull throb and a burning. Another man comes. He will give me a pill to make the pain go away. I give him a lock of my hair and he goes away, his wife silent at his side.

It's now I realize my husband is gone. He'd always struggled to keep up. I search for him. I call for him. But he's gone and I cannot find him. More of my hair is snipped off--there is more bald than hair now.

I hear something on the breeze. Someone calling my name. At first, I ignore it. But it grows louder and louder. I run back to my children. A beast has come--it's fur like torn shadows. It's eyes a baleful blue. It's teeth are long and sharp. They are locked around the head of my oldest child.

A scream tears through my throat. I run, snatching up a broken branch. I beat at the creature. But it's teeth only dig in harder. My sons screams, begging me to help. But the branch breaks in my hands. I launch myself at the creature, kicking and biting. But it is like fighting against shadows.

My husband finally comes. Between the two of us, we manage to drive away the creature. My son is torn, his face barely recognizable for the wounds. We try to bind him, but the pain is too great and he won't let us touch him. The darkness comes and we can only move on.

Within a day, infection has settled in and the boy I know is lost to pain and anger.

"Where were you?" I ask my husband, through my weeping.

"I am sick," he tells me.

I glance back, at the darkness coming for us. I don't know if we can outrun it this time.
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