Month: March 2017

The Nightmare

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I am in a painfully bright room. White walls, white cabinets, white floor, all illuminated by fluorescent lighting. Evan is to my right, seated in a black plastic chair, left leg on his right knee, hand on his ankle. He is several days behind on his beard maintenance, and he keeps running his hand through his hair, a sign that he is in a thoughtful frame of mind. I tune in to what his moving lips are saying:

“… Pattern seems to be a few days of constipation, then stomach cramps and a painful bowel movement. ”

He is looking straight ahead, and I follow his gaze to a young woman, blond and stylish, sitting at a small portable desk. She takes notes as Evan speaks. When he finishes, she looks up from her stack of paper, saying, “It sounds like we should go back to four ounces of prune juice every day.” Evan nods.

It takes me a minute to understand what is happening. I took two Vicodin, two Clonazepam, and a capsule stuffed with Marijuana last night, so I feel like a sleep walker, disconnected from reality just enough to confuse it with a dream. Now I am waking up, though, and my reality jars me.

“What do you think, Rachel?” the woman asks.

I think that I have no idea how or why I’m here, that I’m in an alien world where we track the myriad ways my body is self-destructing. I think that I have been in this Hell so long, I don’t even notice how awful, unnatural, unfair it is because humans adjust to anything in the name of survival, for better or worse, but that’s also the key to happiness.

However, that isn’t what she wants to know, so I file the horror away in the drawer labeled “To Cry About Later ” that is so full, I have to squeeze the paper in.

I paste on a smile and say, “Prune juice sounds fine.”

Choosing Hope Over Fear

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X-File 06102015: ALS

Agent Fox Mulder, the protagonist of the cult classic TV show “The X-Files”, is on a mission born of personal tragedy. He is obsessed with hunting down UFOs in order to find answers about extraterrestrials because as a child he witnessed his sister being abducted by aliens. His search for answers is relentless even though science hasn’t caught up with his belief that “the truth is out there.” Every time he investigates a case that seems bound to result in revelation, he gleans only enough scraps of information to keep from losing faith. Is this starting to sound familiar?

Those of us who have been personally affected by ALS have a similarly dogged commitment to searching for the truth about a disease nearly as mysterious as ETs – one without a known cause or cure. The countless studies made possible by extraordinary fundraising efforts such as the Ice Bucket Challenge are providing glimpses into the shadows shrouding ALS. Sometimes I wonder, though, when the revelation I am waiting for will finally come.

Like my favorite FBI character, faith keeps me going. Many people think that you either have faith or you don’t, that believing is an ability we can’t control, like a natural talent for music or art. However, I experience faith in the dedication and brilliance of the scientists working to slay this dragon is a decision. Agent Mulder is famous for his line, “I want to believe.” Being impatient and afraid are inevitable, but letting those emotions overwhelm faith is a choice. I want to believe, and so I decide to, again and again, for as long as it takes.

mulder-and-i-want-to-believe-poster

Oceans Between Me and You

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Lately, I feel like the little girl in this music video – that I have to put on a cape and mask just to face the world and my increasingly isolated place within it. Of course, that’s not a healthy or sustainable way to live, but I try all the same. Perhaps I try because I prefer the dull ache of wearing my cloak to the sting of vulnerability that comes with allowing the whole world to see my wounds. I doubt that I am alone in this, so maybe simply sharing the feeling will be helpful even if I can’t expose the words written on my back  for fear that they are true.