Salud

“The Holy Holly Herb” read the top of my invoice. The people at Yerba Mate Land left the mark of their hand on the bottom of the page, “Madison, Thank you J Salud.” It was a big order, but it doesn’t take long to plough through a bag of the magical herbs when you have three mate addicts at home. Plus, I wanted to try the different cuts that I learned about in my new book, Mateology. It turns out that growing and preparing mate for sale is an intricate process: the South American version of roasting coffee for consumption. This heavy box of herbs and my new book marked the beginning of my obsession with the symbol of South America. Can it be considered a collection if the materials will be consumed?

 

Mate is the only thing that all homes have at all times.

Always.

 

We had to be prepared for the possibility of Argentinian visitors . . . in Memphis, TN. We brought a couple bags home. It is not explicitly stated on the signs in the security line, but it is not advisable to attempt to fly with yerba mate. If you choose to do so, plan for delays: you will undoubtedly be stopped by TSA.

“Is this your bag?”

“Yes.”

“Come over to this table, I’m going to have to inspect it.”

“Are there any sharp objects or substances that might harm me in any way?”

“No.”

She pulls out books and glasses then the plastic bag containing the gourd, bombilla, and yerba, and looks completely perplexed… Is this woman really stupid enough to try to travel with a bag of weed?

“Oh that’s yerba mate!”

Her expression is even more confused and concerned.

“It’s a tea from Argentina; it’s loose leaf. I promise it’s okay.”

Still confused, she swipes the tea bag, and tests it for god knows what in that mysterious machine.

“All clear.”

“Thank you!”

 

Mate is a manifestation – an herbal conductor of openness and friendship.

 

Our guide, Ismael was shocked to learn that I drank mate at home. I didn’t do it right though; I brewed it in my coffee maker or through a strainer like loose leaf tea. He demonstrated the proper way to prepare the mate while we were driving to the Glaciar Perito Moreno. He carefully poured the yerba into the mate gourd, until it was ¾ full. Then he explained that you cover the opening at the top of the gourd with your hand and shake it at an angle, creating a mountain of mate on one side of the cup. He poured cold water at the bottom of the mountain because he said it prepared and protected the yerba from the incoming hot water. He placed the bombilla (straw) in the water at the base of the yerba, then filled the gourd with hot water, only pouring in the hole around the straw. “You never should pour boiling water on the mate because it will burn,” he explained. “I will now test it a couple times to make it good to drink.” The four of us watched from the back of the van as Ismael passed the mate to the van driver. A couple sips, and the driver passed it back to Ismael. He poured fresh hot water in the gourd, and turned to offer us his mate. Our faces must have read absolute horror. North Americans do not share straws.

 

Mate doesn’t refuse anyone.

 

After our hike, we sat in a circle in the living room that smelled of cedar and burning firewood. Lucas prepared the mate, and began the ritual. He took the first couple rounds before passing the mate to Charlie. He explained the rules as we went around. The cervador should point the bombilla toward the person receiving the mate. Only the cervador can pour the mate. When my mom received her first round, her hand gravitated toward the bombilla, and Lucas immediately said, “Don’t move the bombilla!” He said it was a cardinal sin, and we all looked at him like he was the Pope. We asked him for guidance. This was complicated. We proceeded with the mate passing and the conversation, but every few minutes, Lucas would add another rule. When my dad said “Gracias” upon receiving the mate on the second or third round, Lucas corrected him, explaining that it was good Spanish to say thank you, but you only say “Gracias” in a mate circle when you’re finished taking mate. “Bull! Lucas you are making this up!” my dad argued. Lucas added again, “Oh yes well you really need to walk backward and …” His voice was drowned out by our burst of laughter.

By the end of the mate circle, he declared us true Argentinians.

 

Mate is the ethical, honest, and loyal unpretentiousness found in sharing.

 

At our last mate circle at the lodge, Gil told us we were passing around too many germs. “Maddie it’s like you’re kissing all these people… and all the other people who have used that straw! It’s gross!”

I shrugged and took another sip.

Krutika walked in and asked what was going on. Lucas offered her the mate, and the first thing she did was move the straw. We all yelled at her “Don’t move the straw!!!” Her eyes looked terrified but her smile gleamed with sass as she slowly removed her hand from its grip on the bombilla.

“What is it? How do I do it? Is it going to get me high?”

“No, no, no; just drink it.” Lucas instructed, “But don’t move the bombilla.”

“Does it have caffeine?”

“No it has matteine.”

“What is that?”

“Coffee has caffeine and mate has matteine.”

She hesitantly sipped, and joined the circle.

Although the other guests and staff at the lodge were complete strangers, we became family in the mate circle.

 

Mate is the only thing that’s shared between parents and children without arguing or blaming each other for something.

 

I should have initiated a mate chat with dad. Maybe he would have accepted my decision to apply for a job in Argentina instead of trying to argue with me. I could have explained how visiting Argentina opened my mind. The hurricane force winds knocked me off my feet, literally, and the wild expanses, people, and culture captivated me. Living in Memphis for twenty-two years began to feel suffocating. I needed change. I needed room to grow. I needed to call another place my home, even if it’s only temporary. I needed to pursue a new path. Times of transition are exhilarating and terrifying. My younger brother and I evacuated Memphis in the same summer. Our parents are supportive us both of us, but that doesn’t mean they want us to build our lives across the country. They wants us to come home, and I understand their desire for our family to stay close physically and relationally, but my brother and I both need space to begin our lives as adults. I’m afraid to tell my parents my dreams and my vision for life ten years down the road because I’m not sure where that road will take me. I have given up my instinct to obsessively plan every moment of my future because life forces changes to my plans with the same rapidity and violence of the winds in Patagonia.

 

Mate is poured in great modesty.

 

Despite my spills and mom’s refusal to follow the proper serving ritual, we took mate by the fire on vacation in Colorado. We were warmed from the inside out by the bitterness of the herbs and our memories of mate circles in the lodge among strangers. After a long day of hiking and skiing, we sat together as I tried to learn Spanish on Duolingo and she researched trips for the summer. We’re going back to the land of mate.

 

Mate makes you feel included.

 

            She taught me Spanish when I was sixteen. My last year of mandatory Spanish in high school; I could not wait for it to end. It’s an understatement to say that the Spanish instruction I received growing up was inconsistent. I had a new teacher almost every year from kindergarten through my junior year of high school. Despite my lack of a foundational knowledge of the language, I maintained a glimmer of hope that Señora could help me. After all, she was the only native Spanish speaker to ever teach me. My Spanish did not improve in her class. When I visited four years after my graduation, I thought she wouldn’t remember me, but as soon as I crossed the threshold of her door, her face lit up and she exclaimed, “Hola Maddie!”

            I had a surprise for her. I recounted our journey to Argentina, her native land. I showed her a picture of one of the plaques in the glacier museum, citing her husband’s research. She was overjoyed. She told me, “necesitás un novio argentino!” I responded, “Yo quiero! Jajaja”

            She taught me the word “che,” the Argentine way of saying a casual “hey.” Then she pulled out a piece of paper for a quick grammar lesson about the vos verb conjugations, which are used instead of the tú form in Argentina. She then showed me where to buy cheap mate in Memphis. Apparently there are several international markets that carry the sacred herb, but one is particularly cheap.

            The next time I visit, I will come bearing mate.

Now you know, a mate isn’t just a mate…

 

Praying for a Miracle

My phone lights up. Millions of pixels brighten in sync telling me that my dad is calling. I swipe right, of course. These moments always bring the corners of my mouth up, my dimples digging deeper into my cheeks.

            “What’s up Ole Man?”

            “Hey Ole Big!”

As I walked to my car after class on a warm October afternoon, I giddily listened to him recount a conversation he had with one of his favorite people. But the words “stage-four pancreatic cancer” and “metastasized to his liver” sent my heart to the pavement. It hit the ground like a ball of lead, gravity reminding me that it’s easier to let the corners of my mouth sag than to keep driving my dimple marks up into my cheeks. I hurt for my dad. At the time, I didn’t know R.J. that well because I had only had a few short conversations with him, but he and my dad clicked. After our first year at the AT&T Pebble Beach Pro-Am, the tournament where professional golf collides with the business world, we all knew their friendship would last.      

*

I don’t remember much from summer school. I spent countless hours studying for “The Biology of Cancer” in the oppressive humidity of Memphis in June, just to get an A, a little boost for my GPA. What I do remember is that metastasis is not good. It starts in the DNA: one small mutation causing more. The cells won’t stop growing and dividing and growing and dividing and growing and dividing. The signals and pathways that regulate cell division fail. Something about GSK, SNAIL, and B-catenin, causes cellular interactions to break down. The bad cells reach the blood vessels and transport themselves to other organs. Metastasis.

*

My dad keeps me updated. He tells me when he hears from R.J., and how he’s doing. He sends me articles and videos about him. R.J. is an astonishing man. He is the reigning Prince of Pebble Beach: 32 years and counting.

Not long ago, I got an email from my dad with a link to an article on Golf.com. I didn’t have enough time to read the entire article walking from one class to another; in fact, it took me all day to get through it. When I finally sat at my desk after a long day of class and practice, I finished the article with warm beads of salt water rolling down my cheeks. I called my dad and we reminisced about the days we’ve gotten to spend with R.J. and how we’re so lucky to know him. The article lead up to the AT&T, where we first met R.J. A day I will never forget.

*

It’s Thursday, February 6, 2014. Mom and I arrived around one a.m., but I leapt out of bed this morning to watch the sunrise over the eighteenth green. The dew makes the green fairway sparkle as it stretches its welcoming arm down the left side of my panoramic view. Just beyond the blemish-less grass under my nose is the Pacific Ocean with its salt-water smell and mysterious rocks. The waves approach and recede with steady consistency, foaming peaks and soft crashes until the salty water is pushed too close to the reinforced wall protecting eighteen green. The white water explodes like a firecracker illuminating the green. I’ve dreamt of this day for months. Countless hours were spent watching you tube videos and googling pictures of the course. I’ve obsessed over these waves, the precipitous cliffs, each blade of grass which has grown up out of a divot dug by the best in the game, and the tree. Standing solitary, it gets to watch this scene everyday. My first day in heaven had finally arrived.

After breakfast, the driver pulls up to a massive tent and I nervously walk around the back of the car to grab the clubs. Dad runs inside for a diet coke, and I go to take a picture for my caddie nametag. Walking through the tent my eyes don’t blink, for fear of missing the glimpse of someone famous. Once I’m “official,” I haul the bag up the hill toward the practice tee, grab a bucket of Pro V1’s and find my Ole Man a spot. As he starts stretching and hitting wedges, a man walks up and says, “You must be Maddie.”

I’m confused and flustered by the number of friends my dad has already made, but I confidently answer, “Yes!”

            “I’m R.J.” His eyes were as clear blue and effervescent as the foaming crests of the waves. His smile radiated a gentle enthusiasm, a warm welcome to golfer’s paradise.

            “Hey R.J.!” my dad chimes in. My mom comes over to meet him too. I was excited and nervous to meet the long time friend of my future college golf coach and head pro at my home course.

            “How ya doing this morning Bill?”

            “Better than I deserve. This place is crazy.”

            “Yeah it sure is cool. Good luck out there today. I’ll be watching for you on the leaderboard.”

            “Haha we’ll see how it goes.”

*

A member of the class of 1978, he earned his degree in anthropology and sociology. He was a star athlete at Rhodes, but before 1984 it was called Southwestern. Leading the football team to its all-time best record of 9-1-1, he was named the Most Valuable Player in ’77. He finished that season as the top NCAA Division III receiver for a running back. He was also named an All College Athletic Conference tailback in ‘77 and ‘78, rewarded the Scholar-Athlete Award in ’77, and was selected to the All College Athletic Conference baseball team in ’77 and ’78. His success on and off the field is a testament to his competitive spirit and leadership. He reminds me of my dad.

*

My dad and I talk about golf and life almost every day. I wouldn’t have it any other way. Golf is our life. Golf is a microcosm of life. Golf is life. The golf community is unique and small. Once you make a connection, you have an endless string of more connections – a spider’s handiwork at your fingertips. Golfers tend to stay involved in the game. It’s an addiction.

On Friday, February 12, 2016 at the AT&T, we were warming up on the range at Spyglass Hill. Phil Mickelson was a couple spots away. I stood behind my dad, praying that he wouldn’t embarrass us (his golf game is not the same one he had in college). There’s always light conversation on the practice tee, especially when I was there. I was one of two female caddies that year, and the youngest by at least fifteen years. Sporting brightly speckled leggings with a coordinated shirt and vest, I always got compliments and comments impressed that I too was a golfer, following in my dad’s footsteps as a collegiate player to be. I’m always proud to be my dad’s golf companion. Somehow my dad struck up a conversation with Bones (Phil’s caddie), and come to find out, they played against each other in college. The golf world is small.

*

My dad always says that golf is the best sport.

“Think about it. Soccer, football, baseball, volleyball, you spend years playing and travelling, but after the last game your senior year of high school, the odds are you’ll never play again. But golf. Golf only begins when you graduate from high school. Even if you don’t play in college, you can play every day for the rest of your life. It’s a gift.”

I think he’s right. But golf isn’t just a sport you play on the weekends. It’s a life journey of learning how to “manage what you can manage and deal with the rest” because you can only control the present swing. You can’t change the bogey on the last hole and you can’t start the next hole with a birdie putt. You have to hit every shot. You have to be there. You have to know the distance, feel the grass, watch the wind, and let go. He always says the key to success in this game is to “trust it.”

That’s what life’s all about. Learning to go with the flow, accept what you can’t change, and trusting yourself. In the article, R.J. said “I want to show [my sons] that no matter how big the challenge, you meet it head on. You never stop battling. You never stop living . . . Why would anyone feel sorry for me? . . . Look at the love these boys have for me, and me for them. I've spent the last 32 years in the greatest place in the world, doing what I love. I've had a helluva life."

*

The pancreas is a glandular organ behind the stomach. It’s an endocrine gland that produces crucial hormones including insulin, and it aids in digestion and the absorption of nutrients. The enzymes it secretes help break down carbs, proteins, and lipids.

*

To put it simply, the similarities between R.J. and my dad are weird. From tough Memphis neighborhoods, they excelled in collegiate athletics, and their drive to win has elevated them to the summit of their industries. They fight relentlessly.

*

I don’t know why there is pain and suffering in the world; maybe it was original sin. I believe that God has a reason for everything, but sometimes you can’t see it in the big picture. I struggle with the reason for R.J.’s cancer, though.

*

The statistics aren’t good. Pancreatic cancer is the third leading cause of cancer-related death in the U.S., and it boasts the highest mortality rate of all major cancers. 91% of pancreatic cancer patients will die within five years of diagnosis – only 9% will survive more than five years. 74% of patients die within the first year of diagnosis. Surgical removal of the tumor is possible in less than 20% of patients diagnosed with pancreatic cancer because of late detection and metastasis.

*

Thursday March 30, 2017: R.J., Tucker, and JT walked through my front door. I’ve never seen anything like the way Tucker and JT look at their dad. Merciless, undying love. They would do anything for him. Tucker stopped working as a caddie at Pebble Beach to be his dad’s full time caretaker. He hasn’t missed a doctor’s appointment. JT and his family left their New Jersey home to spend over a month with his dad after the diagnosis.

Over dinner we talked about R.J.’s health. The chemo he’s getting now is less frequent but just as brutal. Every Monday he goes in for treatment, and comes out feeling sick. Tucker said, “I’ve learned so much about him through this. I’ve always known him, but seeing him go through this has let me really know him. I know what he’s thinking. It’s amazing.” R.J. agreed. Suffering doesn’t only impact the sufferer. Out of suffering comes understanding and real, unapologetic relationships.

That was one of the best nights of my life. It felt like we had known each other our entire lives, these are the connections golf makes.

*

Friday March 31, 2017: The weather is perfect. It’s one of those Memphis spring days when the sun is out and you don’t even notice the temperature. The cool wind licks your pale, bare arms as the sun kisses your cheeks. The dogwoods are blooming and the grass is turning green again, the signs of God’s grace and renewal.

 

This is the beginning of a miracle.

 

I reached the green in two! I smashed my drive and got really lucky on my second shot, but I have a chance at birdie on the longest par four. R.J. pulls me down like the gravity on my ball as it reaches the edge of the cup and drops, “Maddie look at those dogwoods aren’t they beautiful?”

“They really are. They’re my favorite.”

“Me too.”

As we walk up to the tee box, R.J. says, “My CBC for white blood cells came back low. Those are the cells that help you fight infection, so that means that I don’t have to get chemo on Monday because I have to have surgery Wednesday. My doctor doesn’t want the chemo to make my CBC lower. I have two splints in my liver. They go down here and in through here (pointing down his throat and into his right side).”

What do I say?  

*

Saturday April 1st: R.J. loved the dessert I made Thursday night, so I made another batch for him to take back to California. Another hug goodbye from his thin frame, and I hopped back in my car. I put my sunglasses on because it was a warm, sunny, Memphis spring day, and pulled away from the airport. Before I turned out of sight I couldn’t breathe; I couldn’t see through the tears. I didn’t want this to be the last time. I didn’t want that to be our goodbye forever. I wanted more time.

*

I'm not afraid to talk about these things.

*

I get texts every few days now.

He’s ok. In pain but good spirits.

Dad and I went for a long walk

A tough week but we r fighting it.

Hospital. Dads ok now tho. Be here a few days.

Been rough chemo weeks since Memphis. Ran tests today. Blood clots all over. And some infections. So treatable. He should be good in a few days.

Dads ok. Goin to watch the warriors soon!

Going ok out here. Dad and I are having a chill weekend together.

*

            I’ll never stop praying. 

Sunday House

It’s Sunday. I feel her weight sinking the mattress next to my curled up body, gently rubbing my arm to tell me that it’s time to wake up for church. Reluctantly, I open my eyes to see her wrapped in her red faux-silk robe, hair still wet from the shower, eyes as tired as I feel. I take a full body yawn stretch under my pink cheetah print sheets before she gently asks me to get up and get dressed. She tells me what to wear, and reminds me to brush my teeth before she goes down the hall to wake up Charlie.

            We sit at the counter slurping our Cinnamon Toast Crunch with 2% milk while Disney channel plays reruns in the background. We are running late as usual, but make it to our regular seats in the section to the right side of the stage. I don’t remember what the sermon was about.

            “Where should we go eat?” Dad asks us as we reconvene outside after our separate Sunday school classes. Our favorite lately has been Jason’s Deli. Mom can get a salad, dad a sandwich and soup, Charlie will eat anything, and I only get grilled cheese with salty ruffle chips and a pickle that I auction off to Dad as quickly as possible. Soft serve ice cream is free, which I’ve never been able to understand because Dad always says nothing in life is really free. Our table discussion covers the topics of Dad’s travels for the week ahead, who we project will win the golf tournament this week, and Charlie and I’s weekly after school activities. Mom reminds me of the homework I must begrudgingly finish before tomorrow, and Dad announces that he plans on spending the rest of the day watching golf. As we finish lunch, Dad suggests we stop by the Sunday House on the way home.

            210 East Cherry Circle, exactly 1.2 miles from our current house, 4870 Gwynne Road, Memphis, Tennessee 38117. We go to the Sunday House every Sunday that we’re in town, always after church and before homework and golf. I’m not sure how it started, our obsession, but real estate has always been an addiction for us.

            My mom was a Marine Corps brat. Every two or three years her parents and younger brother would be relocated to another city, hundreds of miles from her most recent home. She’s called the pine forests of South Carolina, the farmlands of west Tennessee, the shores of Lake Eerie, the golden autumns of Virginia, the beaches of California, and the cherry blossom springs of Japan home, and that’s just naming a few.

            My dad moved when he was four. From Dallas, TX to Memphis, TN, and he’s been a Memphian ever since. He lives and breathes the city and wants Charlie and I to raise families here.

            When my parents got married, Mom explained that she needed to move. She didn’t like being stationary. She wasn’t ready to accept 20 years in one house. Dad did not want to leave Memphis. His whole life was in the city: family, old friends, work, golf. They compromised, and every couple years they moved to a different house in the same city. Mom’s necessity for movement wore off on Dad quickly, and developed into a deep obsession for real estate that has been passed down to me.

            We park on the street. The walk up to the front door is treacherous. It rained yesterday. We step lightly through the puddles of mud onto the slippery plywood, yellow brick road into the house belonging to no one. Not yet.

            We’ve been coming to look at this house for what seems like years, but I know it’s only been a few months. The transformation we’ve witnessed fascinates and thrills me. When we first happened to drive by on one of our Sunday afternoon real estate drives, it was just a slab of concrete. Then they put up those ever confusing two by fours framing the house as a skeleton, a resurrected dream. It’s only after the plumbing and electrical are finished that the plywood and plaster walls are put into place, robbing the space of its status as a clean slate, but giving prospective buyers a clear vision of their life in the new house. I know a lot about houses for an eleven year old. I don’t like talking to the agents, though. The Sunday House embraces its prospective residents; you don’t need an agent to walk around and see the progress and potential. Every time we walk through, Mom and Dad talk about what each room would, or could house.

            There’s a foyer when you enter the front door with ceilings that seem to reach the heavens. Looking up, you can see the lofted hallway from which the four bedrooms upstairs branch off. From the foyer you can walk straight into the kitchen. It has a nice big island where you can put bar stools, and it has a view into the den where large windows look out onto the enormous backyard with ancient oak trees and the possibility of a pool. Outside is a large concrete area sectioned off for a porch on one side and a screened in porch on the other side for those hot summer Memphis nights when the mosquitoes seek to pierce your skin to give birth to the next yellow fever epidemic. There’s a section of indoor space that separates the two porches, which would house the breakfast table. Up the long, winding staircase are too many rooms. One’s for me, one’s for Charlie, and then there are two more purposeless rooms. Mom and Dad always had different ideas for these unnecessary spaces. One could be the kid’s room or the media room with a giant TV on which we would watch golf tournaments and movies together as a family, snuggled up on the couch with the dogs. They never came up with a great solution for the one left over room, unjustifiable space.

            When we walk into my room, we always talk about the two walk-in closets. One is slightly larger than the other. I love these closets. Mom and Dad say they’ll let me do something cool with the one I don’t use for clothes, so I ask for a swing. I think Mom suggested a desk for me to do my homework. Charlie’s room doesn’t have two closets, but he doesn’t care. He’s only seven and a half and he doesn’t like house tours anyway.

            It’s in my blood, this addiction to real-estate hunting. It’s been a hobby of my parents for as long as I can remember. I’ve lived in five houses, but we’ve owned at least twelve since I’ve been alive. When we visit new places, we look at the real estate online and drive around picturesque neighborhoods talking about the interiors and what our lives would look like if we moved or vacationed here. We like to dream. We possess an unconscious desire to find the place that feels like home, the place that fits each of us individually and all of us collectively. It’s a sensation for which we search, a feeling of belonging and comfort that no one can truly describe. It’s best known as a cliché painted on wooden boards and canvasses and hung in foyers and living rooms: “Home is where your heart is,” “Home is where your story begins,” “Home is your family.” We have family, but we can’t seem to find a singular physical home that fits our familial puzzle.

            I ask if they’re going to buy the Sunday House. Not today, but maybe. They can’t seem to justify the space: it’s too much for the four of us. But we keep coming back. Every Sunday we look at the house. Mom and Dad talk to the builder about certain customizable details like the countertops, a gas fireplace, lighting fixtures, and tile for the bathrooms.

I imagine our life in this house: I sit at the counter telling Mom about how Dad and I played golf today while she sautés mushrooms and onions, toasts burger buns, and roasts her famous potatoes. Charlie plays with some hot wheels and Legos on the floor behind me in the den. Our dogs Holly and Bruce sunbathe outside on the freshly cut grass, and Dad is sending emails and checking PGA scores on the patio where he grills burgers in his golf clothes. It’s an early fall night, not too hot to enjoy the fresh air, so we sit at the table on the screen porch to eat dinner. I always imagine Sundays. They’re easy. After dinner, we watch a movie, probably Remember the Titans or Uncle Buck. Before I get in bed, I swing in my closet.

            We didn’t buy the Sunday House. We bought the house directly behind it. After looking at the Sunday House for over a year, my parents were ready to move. We had lived on Gwynne for five years (a family record). I remember the tour of 210 West Cherry Circle. I didn’t want to like it; there was only one closet and no place for an indoor swing. It was an old house and didn’t feel like a clean slate to me, but Mom and Dad fell in love. They always say it’s the perfect house for our family: just enough room. They’re right.

            Our backyard backs up to the backyard of the Sunday House. I’ve never met the family that lives there; I don’t even know their names. When they first moved in, I used to look into the upstairs window from my backyard at night. I could see little kids and a TV screen showing cartoons, or maybe I just imagined Charlie and I. I don’t want to know who they are. I like my memories of the Sunday House: a clean slate full of possibilities for our family. Sometimes when I come home sitting on the screened in porch on a warm summer night when the mosquitoes are searching for prey, I can hear the kids playing on the swing set I’m sure they have in the backyard of the Sunday House.

 

My Security Blanket Blinks

I slept with a baby monitor until I was 17. Its white, oval shaped body stood proudly on my bedside table with its light blinking in communication with its partner in my parents’ bedroom.

I always wondered how they slept. Were they as nervous every night as they were the night after my diagnosis? Did Mom jerk awake every time she heard me roll over in my sleep? Did they ever tip toe down the hall to peer in my room in the middle of the night, making sure I was sleeping soundly, breathing?

My favorite song was “My Wish” and I jammed out when they played it. Rascal Flats was my first and second concert and my favorite band when I was in sixth grade. I was ready to become a famous country singer belting out every word of their songs, and wearing my “Rock n’ Roll” t-shirt with orange cowgirl boots. The whole concert was perfect: they played all my favorite songs, and my parents even let me stay for the encore. When we left, we started driving to our lake house. Two and a half hours was never too far for a weekend getaway.

Dad’s arms gently scooped my little, limp, sleeping body out of the car and into the house. I deliriously changed clothes and brushed my teeth before I climbed into my parents’ tall bed. All the while, my parents were dealing with the hot water heater leak in the basement. When everything finally calmed down, Charlie and Mom went to sleep upstairs and Dad and I took my parents’ bed. Charlie was a mama’s boy. He would ask to sleep with my parents every night, so on nights when we were out of town or out of our normal routine, we would both get to sleep with a parent so that the bed wasn’t too full and no one was sleeping alone.

My body went numb. I didn’t notice at first; I thought it was part of a dream. Tightness took hold, and my chest, throat, eyes, mouth closed. I couldn’t breathe. I couldn’t speak. When the shaking began I thought it was a nightmare. My chest shook violently, my body stinging with the numbness of millions of needles piercing my skin. I feared that I wouldn’t be able to wake Dad despite my attempted grunts, and he would wake up in a few hours next to my little cold, stiff body.

I know what happened while I was blacked out because I’ve heard the story hundreds of times. It’s one of those stories that with repetition, the images become stronger: I can see the scene as it unfolded, but I will never understand what happened that morning.

 “AMY COME QUICK!” were the words Dad shouted upstairs. They thought I was choking so Dad scooped up my shaking body and performed the Heimlich to no avail. Panicking, they called 911. After they laid my limp body out on the bed, my parents and little brother watched my eyes roll to the back of my head. They thought I was gone. I wasn’t breathing, so Dad performed CPR, and they say they heard a pop: not a bone, but something in my throat, mucus, saliva, or vomit that could have killed me. Charlie was huddled in the corner crying, talking, and praying with the 911 dispatcher. It took the ambulance 30 minutes to find our house on the back roads of small town Tennessee.

I was exhausted. Mom was gently petting my leg as I awoke at the foot of my parents’ bed. All I wanted was to curl up and go back to sleep, but Mom kept talking to me, telling me to stay awake. With the support of the EMT and Mom, I hobbled over to the stretcher. Mom rode with me to the hospital, and I don’t remember much about the ride. I was tired.

Tests were done at the hospital, nothing too fancy though. They said it was a fluke.

I met with a neurologist in Memphis a couple weeks later. More tests were done, and again it was a confirmed fluke. They didn’t diagnose me with epilepsy because a diagnosis usually requires two unprovoked seizures. Many suggestions were made, including an investment in sunglasses with an interior blue-tinted lens. Bright lights are infamous for causing seizures, but the blue tint helped protect the brain in some people. The doctor said that if I went seizure-free for six months, my chances of having another were halved. If I went seizure-free for a year, I would never have another.

Two years and ten days later, it was spring break 2010. We had returned our rental skis, cleaned up the house, and packed our bags. Charlie once again did not want to sleep alone, but tonight he wanted to sleep with Dad, so Mom joined me in my bed.

My body went numb. I knew what was happening, but that didn’t lessen the excruciating pain of the shaking and numbness or my breathless panic.

When I woke up, Mom was waiting for me, petting me gently. She asked me if I knew what happened. I told her I had another seizure.

“Yes.”

“So now I have epilepsy and have to take medicine?”

“Probably. We’ll see.”

More tests and more doctors’ visits. He suggested that I sleep with a baby monitor since my seizures happened “upon awakening.” I thought this was a good idea. If you haven’t experienced or remembered the feeling of a tonic-clinic seizure, you probably don’t understand why I would welcome with open arms a device that would invade my privacy and infantilize my pre-teen and teenage years. I was scared and scarred. I needed something to protect me – to make me feel safe, and this way, I wouldn’t have to host a slumber party with my parents every night. But my parents wanted more tests and more answers.

Rochester, Minnesota, the place where people call coke “pop” and have funny accents; the home of endless cornfields and the Mayo Clinic. I dreaded my 5:00 am wakeup call after only being allowed to sleep for four hours, but I relished every second in the MRI. The loud bangs and taps that echoed through the tube encasing my head were oddly soothing like a rhythmic sound machine. From the MRI, to the EKG and EEG, and vial after vial after vial of blood samples, Dad and I endured a day of tests.

Then we played the waiting game.  The doctor told us that my neurologist at home was the best of the best and he was right: right medication, right side effects, no other disease or condition was causing my seizures. Just epilepsy.

My parents took the opportunity to ask more questions, only one of which I cared enough about to remember years later. “Since generalized epilepsy is genetic, could Charlie also develop seizures?” The doctor applauded them for asking a good question, and answered that it was a possibility; he needed to be watched, but it was pretty unlikely. After all, it was pretty unlikely that I would “inherit” epilepsy from my paternal great aunt. This question prompted my own internal concerns, so I waited until the end of my parents’ 20 questions game to ask the doctor if my children would have epilepsy. Again, she said it was a possibility, but unlikely.          

With the responsibility of multiple doses of medication came: “Did you take your medicine?” at least four times a day. Sometimes, the answer was no, which led to Mom frantically bringing my medicine to school and lecturing me that afternoon. I always took for granted the fact that she resigned from her job to take care of Charlie and me while Dad travelled weekly. But I never realized that she had a life outside the carpool line.

Building a new routine around a few pills is not easy when you’re 13. Especially when those pills have immense side effects. The first doses sent me into an immediate slumber from which the spell was not broken for at least fourteen hours. My principle and teachers were flexible with me, allowing me to finish eighth grade and move on to high school even though I skipped half the school day for three months. Some days I skipped altogether because of exhaustion or migraines (common in epileptics). After a few months, my exhaustion became a result of a lack of sleep. My medicine no longer kept me sleeping; it would keep me wired wide-awake, prompting more conversations with my doctor and the addition of a sleep aid to my daily pill routine.

People used to tell me that I was more mature than my age. These people don’t know what it feels like: the pain, confusion, panic, last shallow breaths before what you perceive as the end. Maybe I spoke and acted more maturely, but these people didn’t see the light blinking on my bedside table.

I love my parents, and I am very close with both of them, but that doesn’t mean that I didn’t wish for more privacy and independence as any young, insecure, anxious teen. When I had my first boyfriend at 15, I begged them for permission to unplug my side of the monitor so I could talk to him on the phone. If I forgot to plug it back in, lecture ensued.

The adjustment period was long. Pills were added and subtracted in a battle for balance. I had to get used to never being alone: in my bedroom, near any body of water, on foreign church and school trips. I have to be careful. I need sleep. I need to avoid bright, flashing lights. I need to take extra care of myself when I’m sick. I need to avoid vulnerability.

When I was twenty, my 18-year-old dachshund died suddenly. She was my constant companion since my second Christmas. Mom called me and explained that Holly wasn’t doing well, that she was spending the night in the hospital to be re-hydrated and nourished. The next afternoon, my phone lit up with a text from Mom that read: “We have to put Holly down. Can you meet at the vet at 4?” The breath was instantly knocked out of me. I never thought this day would actually come. Holly was that dog who just kept on living, despite eating pounds of chocolate and other “human food” throughout her 18 years.

We all gathered at the vet and petted her long, black and grey body as she struggled to breathe. After Mom held her for a few minutes, she passed her on to me. Tears ran down my crimson, stinging face, dripping on her soft black fur. I rocked her as she labored to breathe, her heart beating against my stomach like a peaceful rhythm you don’t want to end. Suddenly, the breathing stopped. I no longer felt her ribs expanding and contracting against my body. I waited a moment for her to start again, but she didn’t. Terrified, I looked into Dad’s face and told him that she stopped breathing. He said that all she needed to let go was to be held and loved by me once more. My tears became a waterfall.

I thought she was already gone, but death takes longer than one peaceful moment. She started twitching and spasming in my arms, and I tried to hold her, but my whole body went numb. I set her on the table and wept and screamed as I stood over her seizing body. When the vet took her away to be put down, I sat on one of three chairs in our tiny, blue-walled pet hospital room. All I could feel was the way her breath stopped and the spams began. All I could see was the pain in her eyes and helpless coughs coming from her tiny mouth with her teeth showing and tongue sticking out, fighting death. My body was numb. My head was spinning, throbbing. I couldn’t see straight. I told my parents I was scared. Dad brought water while Mom told me to close my eyes and meditate. Nothing seemed to be helping, and I couldn’t breathe. An hour and a half later, I hung onto both of my parents as they walked me to Mom’s car. She slept with me that night.

I don’t remember seeing my parents cry when I had my seizures, but I don’t know what happened on the other side of the blinking monitor. I wouldn’t trade my epilepsy. It has taught me to listen to my body and trust myself. It has taught me to respect my parents even more because they were my advocates when I couldn’t speak for myself.

Sometimes, I miss the monitor, ceaselessly blinking on my bedside table. It was a constant symbol of security and love.