Follow "Threw"

It's been nineteen years since I lost my independence.

Sixteen years since I got punched in the gut by a phone call. 

In 2002 I brought my granddaughter home from the neonatal ICU. She was 10 days old. For almost three years I took her to specialists at top hospitals in search of answers. The experts relentlessly poked and prodded, but a clear diagnosis eluded them. We ran the gauntlet called diagnostic odyssey, yet no one considered the possibility of a faulty gene, passed from mother to child, from my daughter to my granddaughter.

It was the spring of 2005 when the phone rang. It was the call that would confirm whether my grandchild and daughter shared the genetic makeup of a ruthless, genetic disease. 

For weeks I waited on pins and needles, desperate to know, but also sickened by the possible answer. Once you know, you can’t unknow. 

When the phone rang I quickly answered.

“Hello, this is Lynn.”

“Hi Lynn, it’s Deidra from doctor Holland’s office.” Deidra’s voice was subdued.

I leaned against the counter and inhaled a long, slow breath until my lungs wouldn’t expand further. 

“I'm sorry to have to tell you this, the test was positive. The genetic defect, … the repeated proteins on the gene were well above a thousand. The normal range is under 35. Her number was over 1,400, which means there is no doubt.” 

Everything after “the test was positive” was muddled. I finally exhaled and breathed out the dark truth now finally revealed. It felt like someone punched me in the gut and knocked the wind out of me. I was unable to speak. 

Deidre waited.

….. “Um… OK.... At least we finally know.” I said monotonically.

“Are you OK?” Deidra already knew the answer.

“Uh ... yeah ... It’s a lot to process …. Thank you for the call … Um …  I need to go.”

“OK. Please don’t hesitate to call if you have questions.”

“OK…. Bye.” 

The dial tone hummed …. nnnnnnnnnn and I chucked the phone against the kitchen wall with the full force of the adrenaline surging through body. As the receiver exploded I fell to the floor and let out a primal scream. "Whhyyyyyyyy?!”

I was alone in the house and didn’t care if the neighbors heard me. Her life, their lives… MY Life …... 

Nothing had changed, but everything was different.

I felt like God just played check mate on us in some sadistic chess game.

I curled up on the cold linoleum and sobbed for over an hour. My tear ducts ran dry and my diaphragm contracted with the vigor of my weeping. I wanted to stay on the cool floor, not let in the new reality, but I had to get it together and pick up Anna from her special education preschool. I drug myself off the floor, hung my head over the kitchen sink and hurled. Throwing up never felt so good. I splashed my face with cold water, then wiped the moisture and my swollen eyes with a paper towel. 

Anna would be turning three in a few months. 

What would her life be like?

I had to tell Camille, but how? She lived in a 14-foot travel trailer in a sleazy campground down by the river. She didn’t have a cell phone and I only heard from her on holidays or when she needed something. I hadn’t seen her in 6 months, since her last court date.

After the diagnosis, pretty much everything I could find about their condition was depressing, macabre. Medical books were filled with black and white photos of nude, skeletal people, their private parts and eyes covered with black stripes. I wondered who the Einstein was that decided those hideous stripes would somehow protect the privacy of those poor souls. They might as well have had numbers tattooed on their arms and been dressed in striped pajamas. They all looked like they had one foot in the grave. It made me want to retch.

When Anna was born, and CPS intervened, my relationship with Camille blew apart. Court dates, social workers, supervised visits, the demands of caring for a medically fragile baby, it all took a toll on our already dilapidated mother-daughter bond. Camille had lost her kid, and the responsibilities that should have been on her shoulders were thrust on mine, but she still couldn’t keep her shit together long enough to follow through on her court-ordered case plan. She made me the scape goat for everything. 

“You stole her from me.” The warped accusation became her mantra. It stung. 

“That’s bullshit and you know it. I raised my kids. I didn’t sign up for this. I gave up my career, my freedom.”

Nearly every time we talked on the phone the script was the same. If I even hinted at the truth, she’d hang up on me, on reality. Dial tone, nnnnnnnnn.

##

Sixteen years is a long time even in the span of a “normal” life, but for someone with a degenerative disease it’s an eternity.  Camille’s road has been rocky. Treacherously characterized by poor decisions. Inevitabilities. She has suffered physical pain, hunger, being cold, taken advantage of and she has lived with criminals and druggies. Needles terrify her so she won’t cross that line. I know this because I covertly inspect her skin when we're together. One small mercy in a sea of vicious cruelty.

It’s been two years since I last saw her and I need to prepare myself emotionally. I’m stopped at a red light and can see her from across the intersection. She’s sitting hunched over on a curb at the gas station where she told me to pick her up. She’s smoking a cigarette with one hand and holding her long sable hair away from her face with the other. Even from across the busy road I can see that she’s the thinnest she’s ever been. Waif-like. I roll down my window to gulp in fresh air before the light turns green. “God, please… help me.”

I pull into the gas station and lock my feelings away, like every time before. 

“Momma.” She says with a toothy smile as she opens the door.

I reach across the car and hug her. My arms could probably wrap her twice. No fat, little muscle, just skin on a skeleton. I feel like I might crush her. 

“Where to?” She asks.

“Aren’t you going to show me your camp?” My question catches her off guard. 

I’m probably the first, … the only person who has ever asked.

“What? Why?” She’s shocked that I would want to see her homeless camp.

“I want to know where you are liv ..….. staying.” The word living is too generous, I can’t let it pass my lips. 

“Your phone doesn’t always work. I need to know where to find you.”

“Uh …. I don’t think that’s a good idea.”

“Why?”

“You look like a target.” She seems genuinely concerned. 

“I can hold my own, I’ll leave my purse in the car.” 

I’m truly not worried, I’m dressed in jeans and a t-shirt, not exactly a Kardashian.

Reluctantly, she agrees. 

For a long time, she’s been telling me what she thinks I need to hear. Her way of trying to tidy up reality. Until a month ago she bragged about how her boyfriend had them set up in a tent with a generator, electric heater, even a TV. At least she had a way to charge her phone. 

He just dumped her. 

I stay a few steps behind as we walk down the bike path, I want to observe. She hobbles as her feet slap the pavement. She leads me to a train underpass embellished with graffiti. 

“Grim did that. Pretty cool huh?” She points to a six-foot skull painted on the tunnel wall. Black eye sockets, four brilliant white teeth and a single yellow one pop from the cement. The artist's tag name, grIM frames the skull in red and cobalt. A tubular light reflects from the far end of the tunnel in a heavenly glow and oozes across the shiny paint. It’s ironic, compelling. 

“That’s his too” she points up. 

A royal blue face that resembles a lion lurches from a stone wall at the top of the tunnel. It has no eyes, just dagger sharp snow-white teeth, a sapphire mane flowing like thready hair, and a blood red tongue. The mouth is rounded, growling. I can almost hear it. Another figment skimmed from the mind of the artist. 

“Wow, he has quite an imagination.”

“Grim? Yeah, he’s always coming up with new stuff. The city paints over it every month but he just paints something new. They keep giving him a blank canvass - dumbasses.”

She gazes at the blue lion as if she's seeing it for the first time. 

Spray-painted words and pictures decorate the grimy tunnel walls like a rudimentary art gallery for vagrants and vagabonds.  Some are vulgar, some spill with anger, all are intriguing. 

Scrawled in black, across a lemon-yellow back drop. “LESSON LEARNED”

What lesson? I wonder.

“I TRIED TO BE NICE ONCE.”

Nice about what? My skin prickles.

“FOLLOW THREW.”

I pause and contemplate the misspelled word. Was it intentional? Does it have some deeper meaning? I’m probably over thinking it.

We walk single file along a treacherous river trail dotted with jagged rocks. She motions toward the ground. 

“Watch your step, needles.” She doesn’t mean the kind that fall from pine trees.

How can anyone live in such a place? I cringe as I watch her stumble along the rocky path, only feet from the river's edge.

“I almost fell in a few nights ago.” She says nonchalantly. 

My heart sinks like a rock tossed a deep pool. 

Enormous cottonwood trees burst from the riverbank to our right, and to our left, impenetrable blackberry vines cover a steep incline that leads to railroad tracks. The river is swift. She wouldn’t have a chance against the muscular current. The thought nips at my heart. I know it could be the vehicle to her demise, but so could malnutrition, cardiac arrest, a simple cold ….. violent crime, all things I cannot allow myself to contemplate.

If her body washed up somewhere downstream she would be a Jane Doe. No identification, no medical bracelet, nothing on her person to tell the world who she is, .… who she was. Nothing. 

She loses her ID and medical bracelets like a person with dementia. I suggested once that she get a tattoo of her name, diagnosis and my phone number. She didn’t think it was funny. I wasn’t exactly joking. 

She weighs 82 pounds, her spine protrudes through her skin, her face is sunken, emaciated, like an Auschwitz survivor. Sagging skin hangs in strange folds from her elbows. They look like old lady elbows. She slurs her words, which are often non-sensical. She sounds drunk. She can't help it, her muscles are wasting and her brain is shrinking. A cop wouldn’t know that. She’s declining, cognitively and physically. She is vulnerable. 

She calls the homeless camp "Marioland." Something related to a Nintendo game.

The place reeks of stale beer, urine and other human waste. I try not to gag. Piles of garbage line the trail; a single boot, burnt food cans, a grungy backpack, dirty clothes, to-go containers, chip bags, a flimsy mattress stained with …. I don’t even want to know. Several piles are half burned. 

Shanty tents and makeshift shelters made of old pallets flank the path that leads to her green pup tent. 

She lives here. Between the river and railroad tracks, past a tunnel festooned with graffiti paintings of penis’s, blue lions, skulls, bleeding eyeballs, and declarations of despair, next to a garbage lined path where junkie needles lie in wait for exposed feet. An air mattress, a couple of ratty blankets and dirty clothes are her only possessions. A few granola bars, otherwise, no food. No toilet. No real protection. 

I restrain the visceral emotions flip flopping in my gut. I know that I am a guest here, that I run the risk of being uninvited if I speak honestly. 

Winter is only a few months away.

Curious, I meander west along the trail. 

“Don’t go down there.” She says with urgency.

“Why not?”

“Um,” she struggles for an explanation. “Bad dudes. You’d be a target.”

My heart sinks even lower than I thought possible, through my shoes, into the filthy peed and shat on dirt. She’s worried about my safety.

##

Two years ago a doctor told her she needed to check into the hospital because her BMI was dangerously low. He spared no punches. “You will die if you don’t go in patient.” Terrified of losing control, she refused. Having power over her death was more important than doing what was needed to stay alive. 

Over 700 days have passed. She weighs less, her disease has progressed and she’s now homeless. A hospital would provide warmth, nutrition, a hot shower, a soft bed, people to wait on her, but she can’t see the forest through the cottonwood trees that line the river, next to the train tracks, beside a rocky path filled with human feces and junkie needles. Staying in "Marioland" means independence to her.

##

I reserved a cheap motel so she can get a shower and sleep in a real bed for a few nights. I carry bags of clothes, towels, blankets to her room. I unpack water bottles, shampoo, soap, toothbrushes and toothpaste. Inadequate comforts, all small necessities. To her, luxuries.

“I brought you a phone charger and battery too.” I know she will lose them, but for now they will keep the lines of communication open.

“Awesome sauce.”  She says. “Thanks.”

I pay for her cell phone, it’s my only way to contact her, a lifeline that’s dead half the time.

I head back to my Airbnb where I decompress, alone. 

11:00 P.M. My phone dings. “What time are you coming tomorrow?”

“I’ll text you when I wake up.”

Tomorrow is her 39^th birthday. Tomorrow it will be 39 years since my 6-pound, five-ounce baby girl came into the world healthy, normal. 39 years ago tomorrow I was blissfully ignorant. 

8:00 a.m. My phone blows up with texts. Ding, ding. She’s like a kid at Christmas.

“When are you coming?” 

“I’ll text when I’m on my way. What kind of omelette do you want?”

“Bacon, cheddar, chili’s, sour cream, pico.”

Good. High fat choices.  

When I walk in to her motel room I find junk food strewn everywhere. Red Bull, potato chips, cookies, soda cans, Sour Patch Kids, it looks like a bunch of 12-year-olds raided a convenience store and had a party. But alas, she is a perpetual 12-year-old.

“What the hell are you eating?” My question and tone don’t go over well.

She’s annoyed by my motherly concern. “What do you expect? 7-11 is the only store close by.”

“I had Hot Pockets too.”

“You can’t eat like that and stay alive. You need real food; fruit, veggies, meat, cheese, high fat content. I’m pretty sure even 7-11 has lunch meat and cheese.”

She rolls her eyes like an adolescent.  “That’s too expensive.”

“Soda, chips and candy are expensive. This is how you spend your food stamps?”

“I’m a 38-year-old woman.” She says indignantly, as if my question is audacious.

Woman? Hardly. 

I stop myself from saying something we will both regret. 

You can’t change this. It’s a losing argument. Her brain is shrinking. She will never grow up. She’s destined to be victimized by her own shitty decisions.

I decide to lighten the moment. “You’re actually 39. Happy Birthday.”

“Thanks.” She says half-heartedly. “I’m old.”

“If you’re old, what does that make me?”

She smiles and nibbles on the omelette, then sticks the container in the mini fridge and we head to the car. We stop by a drug store and buy a medical bracelet. I have to take it to a jeweler to get it sized. He looks surprised when I ask him to take out as many links as possible. He doesn’t know that I can touch my thumb to my finger at the highest part of her forearm. 

“It’s for my daughter.” He assumes she’s a child.

I take her for a haircut and birthday lunch then get her signed up for housing. Even the medically based programs have months, years long, waiting lists. She will never follow the rules anyway. It’s futile.

“Would you consider moving back to California?” 

“NO!” She snaps without hesitation.

“You’d have the support of family, stability, I could case manage appointments for you.” 

It’s a Ground Hog Day conversation that ends the same way, every time, in a figurative dial tone. nnnnnnnn. 

She’s going to die on the street and there’s nothing you can do about it. Accept it.

The problem is, I can’t accept it. And so periodically, I attempt to have a conversation about things that are common sense … to everyone else. 

My last day arrives. Our tearful goodbye breaks my heart for the thousandth time.

“I wish you’d consider moving back to California …..”

I finally say what I really want, even though my words sound harsh. 

“I can’t help you from 500 miles away.….. You’re going to die out here.”

Tears explode from her eyes as she unloads.

“I can’t think straight, no one takes me seriously, I’m always in pain, I can barely walk, or talk, my gut hurts, I’m depressed, all the time, I’m lonely, all I want to do is sleep. Dying would be easier than living.... NO! I’m not leaving.” 

She can’t see the forest through the cotton wood trees by the river…...

Her death wish is clear, and my heart crumbles with our final goodbye. 

“I love you.”

“I love you too momma.”

She is unable to Follow Threw.