Both Things Are True

The summer before freshman year I visited my cousin Zettie and her girlfriend Aly at their intentional community in Ann Arbor. The grass is tall and the humidity makes my skin itchy- but it’s sweet. My Mom grew up here. One morning, Zettie and I make our go-to breakfast- jammy eggs with lots of salt on thick seedy bread, steamed greens on the side. “I had a crazy dream last night,” she says. We both have crazy dreams. “I was watching this theater piece- this dance- about this terrible disease I had never heard of before. And I can’t remember much about it other than it was so beautiful and so moving.” Zettie chooses her words with much care. Her voice seems filled with awe. It’s unusual- for her to dream about the stage and not me. I can see this winding dance in my mind’s eye- like I know exactly what it would have looked like. Pale bodies against a red velvet curtain, a lonely stage. Like a Japanese Butoh performance, twisting and colliding in anguish and desperation- movements thwarted by pain, by some demon wracking havoc on the body. Flesh presses against flesh, as if to say its all of us suffering together. And in the end, a small woman, completely naked, the soul, dances alone- like Margaret Edson’s “Wit.” Free at last from the confines of flesh and bone, she disappears in a blinding light. 

Two days ago, I offered up my body to ALS research for the first time. Eve with blonde hair and wire rimmed glasses just like mine met Emily and I at 9:04 AM at Columbia’s neurology department. I texted her that I’d be late because I wanted a special coffee drink for my visit. They told me to bring snacks and activities for down time!

Dr. Harms seems young, but he knows a lot about C9orf72- even more than me. Finally I wont be the one explaining this disease to a professional. He listens to my racing heart, feels around my liver, asks me to follow his finger with my eyes. Then he has me walk across the room on my tiptoes, resist against his hand as he pushes into my arm. As he examines me I get the chance to ask him questions that I’ve been curating for a year and a half. 

“What is the latest on penetrance? How can I get my uncle involved in the phase 3 TPN-101 trial? Should I prepare for a short life?”

“You should keep chasing your dreams.”

Dr. Harms tells me that even if I’m positive, I will benefit from antisense targeting ASOs- small molecule drugs injected into the spinal cord that will work where sense targeting ASOs failed. This is his opinion. “I’m not telling you this to give you false hope. This is just realistic.” And then there’s CRISPR-Cas9- actual gene editing. Medical science fascinates me. Lots to be hopeful for. Lots to fight for. There’s too many people who are currently sick, or may get sick very soon. We need these drugs now.

Then my blood is drawn. It seems like a lot. The staff gives me cranberry juice while my fate is decided somewhere- my genetic results in the confidential research system.

I exhale into a little machine to test my lung function- using my vocal training to squeeze every inch of air out of me- See? I can breathe just fine. Dr. Lee comes into the room to perform an EMG- this test is the definitive diagnostic tool for ALS. He makes Emily leave. “I find that another person in the room makes the pain worse.” Hmm.

For the first part of the test, he attaches electrodes to various places on my arms and legs. He presses a probe against a different spot and sends an electric shock between the two electrodes. It feels like one of those shocking toys that would be at Aahs, a gift store in LA. Strange! Surprising. But not horrible.The next part is tricky. “I’m going to stick needles into your muscles to measure electrical activity.” Well, that’s ok, I’ve had acupuncture. He makes sure I know these needles are much thicker. They are stuck strategically- I recall a month ago in Chicago. My head on my friend Cami’s lap as she tucked my hair back to stick tiny pins into my ear. Dr. Lee wiggles the needles into my muscles- ones in my hands, arms, behind my knees. That hurts a little more. I suck in air through my teeth. This goes on and on. He tells me I have high pain tolerance as the needles leave bruises. I’m mesmerized by watching the electrical signals dance across the screen. I’ve always been fascinated by the body.

The last part of the test is a cognitive exam. Eve comes back – I bet she’s younger than me. She tells me a short story, then asks me to repeat it back to her, word for word. For someone whose job involves memorizing sides all the time, I thought I would be better at this. She asks me to name pictures, repeat a series of numbers, tell her which word doesn’t make sense in a sentence, then repeat the same story from before. Emily fills out a form telling the researchers that I’ve displayed no strange behavior- nothing new anyway.

I’m done. I get a referral from Dr. Lee to sign up for his Metabolic study on people at risk for ALS. I have a call planned to set up my ALLFTD appointment in several days. I’m in it now- no going back. Guinea pig for life… but guinea pigs are cute, so it’s ok. My friend Sydney is in town, and I run home to change so I can meet her at Sunset Boulevard in an hour. I’m running late and stressed about it. Later when I’m tearing up during the overture, I’m reminded how sweet it is to be stressed over something as simple as being late to a Broadway play. Not about my likelihood of ALS or FTD. I feel kind of aglow inside- I hope my data will help save lives.

“They’ve been saying there will be a cure for ALS in ten years for decades.”

I choose to believe there’s a reason to keep fighting.