In Going to Visit a Friend Who’s Sick

IMG_4287I told someone about the time Whitney and I had together recently, and said it was the perfect summer romance.

“We had a month. Exactly a month. And he was leaving and we’d never see each other again,” I said. “So we had this month of intense connection without worrying about whether or not it’d turn into a relationship. We could just be with each other, and love each other as much as we wanted without any stress over the future.”

*

In going to visit a friend who’s sick, and telling people I’m doing so, most of the reactions are sad moans and frowns. When I said I wouldn’t be able to see him, they’d cock their head to the side a little and furrow their brows in confusion.

IMG_0052“He can’t tolerate anyone being in his room,” I tried to explain. “He’s too sick. He’ll crash if his brain is forced to process who I am and why I’m there and he’d go into a vegetative state. His body would shut down.”

“But I thought he only had chronic fatigue syndrome?”

IMG_0094I barely understood the science of it, or how it worked. The only way I could think of explaining it was that, even though he’d spent most of his time lying in bed for the last three years, it was more like he’d been resting with his eyes closed.

“Imagine how you’d feel if you hadn’t had any restorative type of sleep in three years. His entire body is so exhausted, any amount of energy output shuts him down to a hibernation-type of state.”

“From chronic fatigue syndrome?”

And so it goes. I can’t imagine what it’s like for patients to explain their daily lives to friends and family or doctors.

*

It was late at night when I pulled into the driveway of the house where Whitney grew up. Even though his parents, Janet and Ron, had left the door unlocked for me, I still felt like a stranger creeping into the house. It’d been over 13 years since I’d seen Whitney, 10 or 11 since we’d talked on the phone, and over a year since I’d received any kind of message from him.

Ron and Janet’s nightly routine consists of quietly shuffling in and out of the back room where Whitney lives. The room he never leaves. He has to be prepared for them to enter the room, has to know when to expect them. Once inside, they work quickly to meet his needs then leave him be. On my first night at the house, I watched all of this with a mix of awe and helplessness.

When I finally went to sleep in the living room, I could still hear Janet moving around in the kitchen. Sometimes she’s still awake when Whitney’s sister, Ashley, gets up for work in the morning.

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Tibetan prayer flags hang over Whitney’s door, above the porch, and all over the back stoop leading from Whitney’s room. When Janet took me out back to look at the forget-me-nots and African daisies Whitney had planted, she said he might be able to see me from the window. I got nervous and hopeful at the same time. I tried not to look in the direction of his room, but after a while I couldn’t help it. He’d planted my favorite flowers all over the yard, and they, along with the columbine he’d planted for his mom, were some of the only ones in bloom. In the backyard, Janet and I talked in whispers. I caught myself staring at the the back bedroom, at the walls that encased him. At the house that keeps him safe, living with the disease that imprisons him.

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Late that night, Janet, Ron and I sat on couches in front of their television, watching the old film East of Eden. Janet had to go back to caring for Whitney, and Ron had to get to bed. I stayed up, finished the movie, and waited to see if Janet would come back anytime soon.

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Whitney Dafoe on Feb. 20, 2016. Courtesy of Janet Dafoe.

Around midnight, she came walking back into the room, a look of disbelief on her face. “Oh my god!” She said, and sat down on the couch next to me. “He asked for food in his j-tube!”

Janet explained that exactly three months ago, Whitney had undergone surgery to insert a feeding tube leading directly into his small intestine. Though the tube was designed to inject a special concoction of nutrients, he had only received water so far. Anything else was too painful. But that night, just after the last scene in East of Eden, Whitney had, for the first time, pantomimed to Janet that he wanted the nutrient mixture.

Before going to California, I wasn’t sure that showing up as a houseguest was a good idea. I felt like I was putting out a family already so overburdened with all of the tasks involved in monitoring and caring for their severely ill son. But Ron said “it’s good to have you here,” and I believed him.

Before I left, I walked around the house and took some pictures. I tried to capture the present and the past—anything that reminded me of Whitney, anything with his handwriting, or photos of him displayed around the house. I took a picture of a spice jar containing turmeric that Whitney had labeled as his. I could have sworn he’d brought the same jar to Alaska when I met him a decade ago.

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*

An avid photographer, Whitney had taken hundreds of photos of us in Alaska—feeding caribou, sitting in a field with muskoxen, journaling and doing art side by side. For me, that time exists only in memories and a couple of letters Whitney had written to me after we parted ways. But any photographs I had are now long gone.

The day after I returned home to Montana, Janet called me. I could hear the excitement in her voice. She explained she’d asked someone to convert all of her home movies to DVDs. After finding a video that Whitney had taken in Alaska, he called Janet. “There was this girl that he had obvious chemistry with,” he told her.

I was stunned. I had no recollection of him using a video camera.

A few days later, at two in the morning, Janet sent me a text. “It’s you in the video.”

I got out of bed and tiptoed out to the living room, trying not to wake my two sleeping daughters. We Skyped and Janet pointed her laptop towards the television so I could watch the video with her. It was almost like we were sitting next to each other again—instead of East of Eden, it was me on the screen. I had blonde streaks in my hair, and looked plump and shorter somehow. Then I remembered how tall Whitney is—over 6 feet—and realized that the video would have been taken from his height.

IMG_4289The footage is a little grainy, and the light is dusk. We are standing next to the caribou pen. I am wearing his college sweatshirt, and Whitney is interviewing me. He mentions that it’s near midnight. When he speaks in the video, there is a fluttering of memory and love and grief in my chest. I’d forgotten how deep his voice was.

“I think this was the night before he left Alaska,” I said to Janet, as we Skyped together. It was a little like putting a puzzle together, trying to figure out when the video had been taken. “If we’d already traded sweatshirts, then he was about to leave.”

I watched with heartache. “Stephanie Land,” Whitney said a few times when he would put the camera on me. Once I caught him doing a close-up of my face from a way’s away and I turned to smile at him. Then I puckered up my lips, sending a kiss in his direction.

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All video stills provided by Janet Dafoe. 

The home movie stopped for a second, then started again. In the next frame, it was sunny. The camera was pointed in my direction. I stood behind my Subaru in a t-shirt that I’d coincidentally worn at his house that week. The hatch was open, raised above my head. This memory is hazy, but is still somewhere in my brain. As I watched the video, the memory became clearer. It was the morning before he left. I remember trying to keep the emotion from bubbling up inside of me. In the video, it is clear that I’m  trying my hardest to not let the sadness show on my face. I didn’t want him to leave.

Then, blurriness, as Whitney turned the camera around to his face.

From my living room in Montana, I sucked in a breath. I remember doing the same thing when I was with him in Alaska—how sometimes he would cause me to lose my breath. Janet commented on how young he looked. He was only 19.

LARS-logoIn the video, he gives me the camera and I follow him into the caribou pen at the Large Animal Research Station, where he’d been working as a photographer all summer. I left the camera focused on him while he knelt down, and fed a small group of caribou some mossy snacks.

Other than the surroundings and the act of hand-feeding caribou, there wasn’t anything particularly special in what Whitney was doing. But the video made me remember what it was like to be so close to him, to be able to touch him, each of us a satellite to the other’s moon, a couple of kids caught up in a summer romance for a few weeks.

IMG_0144In the caribou pen, he put his face close to some yearlings, nearly touching their noses with his lips. The video ended with him holding the camera as he lay back in the grass, several caribou sniffing at him, hoping for more treats.
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Earlier in the video, he’d asked his roommate if she thought he loved me. She had nodded yes. At least I thought so, anyway, when I watched it—I couldn’t hear it very well. I know I heard him say the words “I love her,” and that’s all that matters.

When we were in Alaska, I didn’t think I’d really made much of an impact in his life. I didn’t think he felt all that much for me. But seeing him watch me through the lens of a video camera, I know now how foolish I was to assume that.

When I talk to Janet, I always tell her to send Whitney my love however she can. I can’t wait until the day I’m able to do it myself.

 

Donate to help find a cure for Whitney, and an estimated 2.5 million who suffer in silence HERE. 

-step.

 

 

 

 

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Finding your Inner Mr. Rogers

DSCN1996Netflix recently made classic episodes of Mr. Rogers’ neighborhood available, and I’ve been watching them with the girls. Or, more correctly, I sit on the couch, my mouth gaped open a little, a tear welling in my eyelid and balancing until I wipe it away while the kids putter around and play with the dog.

Mr. Rogers was a sort of hero to me. He was the grandfather I’d longed for. The friend down the street I wanted to visit, the answer to my uncertainty and angst at four-years-old. I used to stand in front of our huge, wood-encased television that sat on the floor, waiting for him to wave good-bye, and I’d kiss the static of the screen, leaving marks for my mom to complain about having to wipe off.

Watching the episodes Netflix chose to release, especially the one with the crayon factory, was to sit as a child again, remembering my small frame and long hair, listening intently to the nice man telling me I mattered because I was me and nobody else was.

I spent the entire month of August hustling to get published. I wrote stories about rape, edited others about abortion, and made lists of how Louis CK and Roseanne molded me in to the parent I am. I submitted, pitched, and submitted more. My rejection pile increased more rapidly than my accepted one, but as of today I’m forthcoming through eight publications, and most of them are new to me and large platforms.

In the midst of all of this, I got accepted to be a writing fellow through the Center for Community Change. This position is the equivalent of running across the room, leaping, and landing in a feather bed.  My boss is an enthusiastic cheerleader of my writing, my story, and talks me up to editors at lunches after listening to me talk for a couple of hours about my struggles over the last decade. Most of all, it comes with a stipend that, with the child support I fought hard to get and receive, pays my bills. My days of constant writing, hustling, and pitching for 12-14 hours a day were done for the time being.

Granted, I have very modest bills. I don’t have a smartphone, cable, a car payment, or high-speed internet. I only fill my gas tank once a month. I have housing assistance and qualify for other programs like free breakfast and lunches for Mia. Federal poverty level is at $16.50 per person, per day, and I’m still under that mark, but not as far as I used to be.

Currently, I just have one piece that’s due next week, and I’m waiting for instructions on another one. I’m taking an online writing class, but other than that I’m not writing. I went from writing over 1,000 words a day to hardly any. I had to take a break from myself. I had to stop reliving those painful moments. I had to shut down and stop being so damn open and vulnerable. I’d wake up in the middle of the night sometimes in a panic, asking “Why am I sharing these things?!” I admit, I’m an avid social media user, and have kept a blog off and on for years, but in this age of publishing online and facing scrutiny through dreaded comment sections, I often felt gripping anxiety over it all, wanting to hide, or pretend my online self wasn’t really me.

DSCN2018Most of all, I had to stop reliving those painful moments, editing my memories to form them into a story arc. Writing about heartbreak was putting myself back in that body, sitting with myself on that porch late at night, feeling that loneliness and isolation again. This wasn’t feeling the warm fuzziness from Mr. Rogers. This was lying in dark rooms, alone and scared.

Instead I’ve been giving myself permission to not write, not work, and take some time to read books or go back and edit pieces I’m passionate about. I take Coraline and the dog for walks, and Bodhi never pulls while we wait for the baby to catch up, holding a leaf or stick she’s found.

It was my birthday on Sunday. I meant to write something about turning a year older, or the fact that it’s the anniversary of conceiving both of my daughters. I wanted to recognize how far we’ve come in the last year, but I don’t need a birthday to meditate on that. I do it almost daily.

The only thing I wanted to happen on that day was allowing our dog, Bodhi, the chance to run without fences, long leads, or a nervous me calling her back constantly. We drove out to the mountains and I opened the door to the truck, watched her hesitate a bit, then run back and forth with the greatest doggy-smile on her face.

We got back to the house, and I ran to the store for dinner stuff. Mia sang “Happy Birthday” to me over cupcakes I’d bought. That night, everything was quiet, and I realized the only adults I’d spoken to all day were two cashiers and a friend I’d run into outside the grocery store. Years ago, this would have sent me in to a spiral of despair and sadness, but I didn’t feel that in the slightest. When I think of my life, minus the tasks of caring for all of us, I feel nothing but contentment. A freedom from want. A happiness. Maybe that’s what growing up means: finding your inner Mr. Rogers. Finding a way to be comfortable with, appreciate and love me because I am me and no one else is.

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The Vulnerability of a Single Mom Toting Two

My daughter was four when I accidentally told her I’d die. We were snuggled under covers, reading a story, and for some reason she brought up a guinea pig she knew that’d died recently, and she wanted to know why.

“Well, everything dies,” I’d said, in my matter-of-fact atheist way.

“Even you?” she’d said.

I couldn’t go back, and she already knew what I was about to say. The tears started, growing to full-on wails. I couldn’t get her to sleep for another hour, and she slept in my bed for a week.

I’d never thought about the what-if scenarios of my death. Mia’s a badass kid. She’s resilient. We’ve been through so much, I think she can make it through just about anything.

***

For a few years, we drove around in a 1983 Honda Wagon that we’d named Pearl. This car, for her age, was a champ, but had an especially difficult time in the last six months we had her. She finally broke down on the freeway, heading west, at sunset. I knew the sun must be in the oncoming drivers’ eyes. Mia was with me, and I was seven months pregnant with a baby I’d decided to have on my own.

DSCN1562Semis rushed by at 60mph and rocked the car while we waited for the tow truck. This just wouldn’t do. I couldn’t have a car that broke down all the time with two kids. A month later, I found my dream truck, handing over the last few thousand of my tax refund that was my post-partum savings to purchase a 1987 Toyota 4Runner in near-perfect condition.

A little over a year later, I’ve noticed I’m still scared to drive on the freeway.

***

We adopted a dog a couple of days after Mother’s Day, and I’ve since been focused on her rehabilitation. If I get ready to leave, she’s at my feet, anxiously looking at me while I try not to make eye contact. She’s also not the greatest with other dogs. She wants to play, but if the other dog gets in her space too much, Bodhi’s place is on the defensive.

The dog trainer said a rescue is kind of like adopting a special needs child. I hadn’t realized how much Bodhi’s quirks either made me stay at home or fearful to bring her out.

This summer went by with only a couple of trips to the river. No camping, no rock climbing, and hardly any hiking. I sent Mia off to do stuff with friends quite a bit, but the three of us (with the added dog) hadn’t been out much at all together.

DSCN1916Coraline, the baby, is walking and beelines for the cupboards and fridge and especially my desk. I can’t afford daycare, so my days are spent doing twenty minutes of precious work before she’s gotten herself stuck in a box or needs a new diaper or the dog needs walked or someone is hungry again and what a process that is.

On the weekends when I’m not shuffling Mia off to camp, I have about fifteen things I do before I get a chance to make coffee. This morning I neared the level of screaming before I’d even boiled the water.

“Let’s go to a lake,” I said. Mia, the noisy one, jumped up and got on her swimsuit. I threw a bunch of snacks in a bag, packed towels and a blanket, and grabbed the dog leash.

I didn’t put on a swimsuit. I didn’t pack snacks for myself. I knew all my energy would go into wrangling.

We had to drive quite a ways, including a bit on the freeway. The truck ran perfectly, the baby fell asleep on the way, but I still had white knuckles on my hands, clenched to the steering wheel. My stomach had that familiar knot. I kept imagining a tire blowing out, an oncoming truck pulling a camper losing control, or me drifting, catching an edge, and flipping us into a ditch. Breaking down on the side of the road was no longer simply waiting with Mia until someone showed up to help. I had a baby. And a dog who’d most-likely be so traumatized it’d set us back months in training.

This fear had ruled my life for months and I hadn’t realized it.

When we got to the spot by the lake, there was a couple there with a dog off-leash. I kept going, down the dirt road that circled to the other side. Or, that’s what I assumed.

We were on that dirt road for at least an hour, making our way around to the main road again. I loved it. I doubt my phone had reception. The dog threw up twice. There were bumps and puddles and we saw two badgers by their den. Coraline woke up and chatted her happy baby noises while I drove through back woods with a general idea of where we were.

I’d forgotten how much I’d loved this. This throwing everyone in the car and finding some back road that lead to a spot only we knew about. It used to be my specialty.

Our truck came full circle, and we ended up back at our spot again. Mia found a sunny spot a little further down a path with a rocky, secluded beach. I sat on a blanket with a content baby in my lap in the sun, dare I say totally relaxed. Bodhi was tied to a tree and jumped after rocks and sticks. Mia swam completely under the water, looking for special rocks. She gathered at least fifty. The four of us huddled together when the wind picked up a bit and the girls ate their snacks.

DSCN1930“I know I’ll remember this,” Mia said.

“Oh yeah?” I said. “Because of the badgers?”

“Yeah,” she said. “I remember weird things, like you licking a napkin and wiping my face before preschool one day. I’ll remember us sitting here on this blanket.”

I put my arm around her, pulled her in a little tighter, and said, “I will too, kiddo.”

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Oh! The Places You’ll Go!

Oh! The Places You’ll Go!
by the incomparable Dr. Seuss

Congratulations!
Today is your day.
You’re off to Great Places!
You’re off and away!

You have brains in your head.
You have feet in your shoes.
You can steer yourself any direction you choose.
You’re on your own. And you know what you know. And YOU are the guy who’ll decide where to go.

You’ll look up and down streets. Look’em over with care. About some you will say, “I don’t choose to go there.” With your head full of brains and your shoes full of feet, you’re too smart to go down a not-so-good street.

And you may not find any you’ll want to go down. In that case, of course, you’ll head straight out of town. It’s opener there in the wide open air.

Out there things can happen and frequently do to people as brainy and footsy as you.

And when things start to happen, don’t worry. Don’t stew. Just go right along. You’ll start happening too.

Oh! The Places You’ll Go!

You’ll be on your way up!
You’ll be seeing great sights!
You’ll join the high fliers who soar to high heights.

You won’t lag behind, because you’ll have the speed. You’ll pass the whole gang and you’ll soon take the lead. Wherever you fly, you’ll be best of the best. Wherever you go, you will top all the rest.

Except when you don’t.
Because, sometimes, you won’t.

I’m sorry to say so but, sadly, it’s true that Bang-ups and Hang-ups can happen to you.

You can get all hung up in a prickle-ly perch. And your gang will fly on. You’ll be left in a Lurch.

You’ll come down from the Lurch with an unpleasant bump. And the chances are, then, that you’ll be in a Slump.

And when you’re in a Slump, you’re not in for much fun. Un-slumping yourself is not easily done.

You will come to a place where the streets are not marked. Some windows are lighted. But mostly they’re darked. A place you could sprain both your elbow and chin! Do you dare to stay out? Do you dare to go in? How much can you lose? How much can you win?

And if you go in, should you turn left or right…or right-and-three-quarters? Or, maybe, not quite? Or go around back and sneak in from behind? Simple it’s not, I’m afraid you will find, for a mind-maker-upper to make up his mind.

You can get so confused that you’ll start in to race down long wiggled roads at a break-necking pace and grind on for miles across weirdish wild space, headed, I fear, toward a most useless place.

The Waiting Place…for people just waiting.

Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go or the phone to ring, or the snow to snow or waiting around for a Yes or No or waiting for their hair to grow. Everyone is just waiting.

Waiting for the fish to bite or waiting for wind to fly a kite or waiting around for Friday night or waiting, perhaps, for their Uncle Jake or a pot to boil, or a Better Break or a string of pearls, or a pair of pants or a wig with curls, or Another Chance. Everyone is just waiting.

No! That’s not for you!
Somehow you’ll escape all that waiting and staying. You’ll find the bright places where Boom Bands are playing. With banner flip-flapping, once more you’ll ride high! Ready for anything under the sky. Ready because you’re that kind of a guy!

Oh, the places you’ll go! There is fun to be done! There are points to be scored. There are games to be won. And the magical things you can do with that ball will make you the winning-est winner of all. Fame! You’ll be famous as famous can be, with the whole wide world watching you win on TV.

Except when they don’t. Because, sometimes, they won’t.

I’m afraid that some times you’ll play lonely games too. Games you can’t win ‘cause you’ll play against you.

All Alone!
Whether you like it or not, Alone will be something you’ll be quite a lot.

And when you’re alone, there’s a very good chance you’ll meet things that scare you right out of your pants. There are some, down the road between hither and yon, that can scare you so much you won’t want to go on.

But on you will go though the weather be foul. On you will go though your enemies prowl. On you will go though the Hakken-Kraks howl. Onward up many a frightening creek, though your arms may get sore and your sneakers may leak. On and on you will hike. And I know you’ll hike far and face up to your problems whatever they are.

You’ll get mixed up, of course, as you already know. You’ll get mixed up with many strange birds as you go. So be sure when you step. Step with care and great tact and remember that Life’s a Great Balancing Act. Just never forget to be dexterous and deft. And never mix up your right foot with your left.

And will you succeed?
Yes! You will, indeed!
(98 and ¾ percent guaranteed.)

Kid, you’ll move mountains!
So…be your name Buxbaum or Bixby or Bray or Mordecai Ale Van Allen O’Shea, you’re off to Great Places!
Today is your day!
Your mountain is waiting.
So…get on your way!

 

 

 

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