Both Things Are True

When I was around five years old, I was in the car with my nanny, Aura. I had a lot of nannies- a regular Mary Lennox with her Ayah. We were driving through Beverly Hills, maybe on our way to a playdate. Through my closed eyes, the sunshine coming through the windows was the color of apple juice. I hummed into it, taking a mental snapshot of this moment-the warmth of the car seat, Beverly Hills, golden apple juice. I added it to my Rolodex of memory- hanging onto hot monkey bars, my purple backpack, kindergarten teacher in her orange dress, Michelle’s Scooby Doo blanket, Cyber Chase at Poppy Jack’s house, Mom’s cold hand on my head. I remember exactly what it was like to be a child- to laugh all the time, create elaborate imaginative scenarios, awe at the universe, feel everything so intensely, recall and notice time pass, my body changing. Time moves, days like pearls falling off a string. Today I work to connect to reality- notice each moment.

Back in LA for two weeks to go on a ski trip with a few friends. Again, I tell myself I’m so lucky. Skiing almost twenty years later! A dream come true, checking it off on my bucket list. I’m working on a Cabaret about Literary Heroines that will premier in a week…. I will sing some Jerusha Abbott, Anne Shirley, Beth March, Jane Eyre with an astonishing (wink wink) cast, talent and collaboration and storytelling that feels like a supernova, so very alive.

On my third to last day in town, I was given the clearance to visit my mother again. It’s been almost two months. She recognized me, of course. There were tears in her eyes. I put my face centimeters away from hers to tell her “Thank you, I forgive you, please forgive me, I love you” as if it was the last time. She mouths it back but no sound comes out. Bulbar effects? She mouths along to “If I Loved You” too. 

Her right hand can barely move at all. Her left hand has more agility. Small miracle- she’s left handed. She’s surrounded by stuffed animals, pictures of the BeeGees and me as a child, still holding onto that photo of her mother. She’s so, so tiny and skinny. She was always bird-like, but now she’s just like a baby sparrow, reliant on someone to feed her, dress her, hold her hand. I know she’s aware of what’s happening to her body. I know she’s scared and confused and in pain. I just want to scoop her up. I make plans to come back to LA right after my show to be with her again.

The governmental budget cuts could severely impact ALS research. Still climbing the Alpine path, I feel like I’m running uphill against a wind, working and working and working and watching paint peel from the walls. 

I can see my DNA, this unstable gene in my mind- like anything could tip it over the edge. What I eat, how much I nap, being under stress, if I cry too much, if I feel too much, anything triggering a tsunami of neurological events- protein aggregation, neurodegeneration, motor neuron dysfunction, melting, shrinking, apoptosis, death. Will it just start one day- Like Mary Ingalls from Little House on the Prairie, waking up blind and screaming for Pa? Or will I not know, the changes sneaking up behind me, covering my eyes with a few fingers, more and more until I can’t see at all?  I just got over the flu-possible inflammation of my lungs and my brain. Bad news bears. So far, besides a few extra twitches, my body seems ok. 

If I’m positive- and If we can protect research on C9orf72- I might not die like my Mom is dying. It’s compelling, overwhelming to think about what a treatment might look like- especially CRIPSR. I’ve heard that some people will die from the procedure as they try to figure out how to deliver this therapy to the brain. It might be very painful, some big delicately planned surgery, or months in a hospital bed, chemo, transfusions, dialysis, who knows.  I’d much prefer this- some unsure, bloody, trembling and complicated attempt to grab fate by the hands and twist it around. Doctors fighting to save my life instead of “there’s nothing you can do- go home and get your affairs in order.” 

I feel like I have five minutes to draw as many pictures as I can- flowers, rainbows, clouds, hearts, planets, hands. Two hands holding onto each other, or holding something small and precious.

Care homes and wheelchairs and Trazadone and marijuana and essential oils and Boost, cigarettes and beer, saliva towels and clinics. Last time I was in LA, I had lunch with a different nanny from when I was an infant. Over her omelet she said “It’s too fast. Tomorrow will be Christmas again.”

To get close to feeling at peace, comforted by benign reality. You wake up, stumble downstairs to make your coffee, sit and ground yourself a bit to start your day before an influx of emails. Live a bit, get a little mad, a little outrageous, a little high, a little disillusioned, a little bored, a little tipsy, a little passionate, a little anxious, or nothing at all. And then everything changes! Your loved ones die, your own face changes- things you will see or do for the last time and not even know it, like folding up the parachute at school or feeding your Tamagotchi. Time keeps spinning and spinning and spinning and you and everything you love is stuck in centrifugal force.

When it comes to my Mom, I’m losing her yet I’m finding myself saying things she would say 

“You got that right!” 

“Well, I’ll be darned!”

“You’re tellin’ me”

Or even saying “kiddo” to one of my kids or some surprising word that makes her face appear and I’m caught again in this battle- I want to be like her! I don’t want to be like her!! She’s not her disease! She’s not- right? Both things are true. She’s been through hell. And she’s a wildly tenacious yet vulnerable, brilliant yet sometimes crass, glamorous yet understated, creative yet traditional, silly yet complex woman. This is how I will remember her. I say a prayer that I can hold her again.