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Grab a Hammer – Let’s Bash Some Fears
My anxiety’s name is Shelia. My boyfriend and I named her last summer when she dedicated all of her time to convincing me my life was crumbling around me. In some ways, life is always crumbling. Whether or not we see how doesn’t always become clear until much later, and even then, only if we choose to see. A pessimist by nature (since I got sick), I choose to see.
Shelia was the reason Spring Break 2015 was hard for me. She’s the reason everything is hard. Her cousin (my depression) play vicious games of tag where no matter who’s it, I’m it too.
Last week when I wrote for my blog, I was in a pit. I had to claw my way out, and I have; I’m doing much better now. I’ll fall into the pit again sometime soon, but until then, I’m going to celebrate that things are okay.
Shelia has this way about her. She’s seductive and beautiful in the morning, a slender vision in a shimmering evening gown. The possibilities of the day are as intoxicating as the smoke from her clove cigarette. By afternoon, she’s ripping her fingernails off one by one, dragging each fragment across my skin until I forget how to relax. Waves of nervous energy finger rosaries in my stomach and if it lasts long enough, I can make my disease flare up. That’s what happened at the beginning of break – Saturday and Sunday. Pain is blind to the possibility of hope. When I’m there, when the burning between my legs makes my spine rigid for hours on end, I forget what it’s like to feel good – okay, even. It’s easy to believe the pain will last forever. And perhaps, that’s the root that allows Shelia to grow at all.
Come Monday, I was ready to spend the whole day with nowhere to go, no pressure to do something that made me uncomfortable (like, you know, socializing with the outside world). My boyfriend and I spent the whole day reading and baking. I used to love baking. Love it. When I got sick, baking was one of many things to be ripped from my hands, just like Shelia, ripping her fingernails off one by one. It’s no fun to bake when you can’t eat any of it. But this time, I baked for Mike and his family, and for my Mom and sister, who came up later in the week.
I made batches of brownie cookies and peanut butter chocolate cake bars. The house was alive with oven heat and crystalizing sugar, melting peanut butter and chocolate dough rising. It was exhausting but it felt good. It made me feel strong. Sure, I can’t eat it. But I sure as hell can bake it (and pretty well, if the sounds of pleasure escaping the lips of my willing taste-testers are any indication).
Mike and I started Parks and Rec, caught up on Gravity Falls, and read for hours. I finished four books on spring break (4!). They include: Bossy Pants by Tina Fey, Tiny Beautiful Things by Cheryl Strayed, Black Dog of Fate by Peter Balakian, and Fun Home by Alison Bechdel. Oh, it is lovely to be reading again. Schoolwork, you can wait – maybe forever.
After a couple of days of relaxing, the true test arrived. Mike’s Mom handed us $200 and told us to go have fun (yeah, I know – the dream). Unsure how my body – and more pressing, Shelia – would respond, Mike and I went out shopping. Before we left, though, I did yoga. It’s become a habit; I can’t function without it. We went first to Target and got lost in all the aisles of pretty things. We bought jeans, pads, and rice because we’re exciting people. Then we went to the mall after getting turned around on the awful New Jersey roads. We wandered around with a purpose. I got my sister a Hot Topic gift card for when she came up, Mike got a new phone case, and I got two new Victoria’s Secret bras. All stuff was nice, but the best part was being with Mike, of course, and that Shelia couldn’t drag me down. She jumped off the cliff solo this time. I waved from the top of the mountain.
On Thursday night, my Mom and sister, Emma, showed up. On Friday, I was preparing to face several irrational fears all at once: the subway, New York City, and massive crowds. I did yoga to prepare and brought baking soda, which I can add to my water when the pain starts to help shorten the length and intensity of a flare. Luckily – or maybe skillfully – I didn’t need it.
We spent the day tromping around to the sites: the Museum of Natural History, Central Park, Times Square, the M&M’s and Hershey’s shops, the Disney Store at Times Square, the High Line. We had lunch at the Red Eye Grill, where I ate rice out of my thermos and had a $13 baked potato with nothing on it. Still, it was nice to be in a restaurant again, another thing my disease ripped from my hands.
By the end of the day, I was still okay. I was tired, but I was okay. It was liberating. I know my life will be full of these phases. I’ll drift in and out of liberation and captivity. I’ll walk the wire and fall off into the canyon. I’ll watch the sun set in Rome and I’ll cry myself to sleep at home. I’m not sure what I’d prefer: a life where the highs are euphoric and the lows devastating, or a life where everything is just average. It doesn’t matter though, because I’m living the former whether I want to be or not.
Before Mom and Emma left, I delivered Emma a plate of homemade desserts with her gift card placed sweetly between them. I interviewed Mom for a school project and we cried together. We played Life Stories with Mike’s family and shared our first “family time” in what will hopefully become a lifetime of them.
Watching my family drive away was bittersweet. Mom’s perfume hung in the air and I could still feel the wind she pushes out in front of her when she walks – a force of a presence. It was bittersweet to leave Mike’s family, as I adore them, and board the train back to the same old thing. In some ways I’m ready for adventure. In others, I’m terrified of it.
Now, my biggest concern is the rapidly dwindling amount of rice in my thermos. It’s 3:28 pm and we won’t be home until 9pm, when I can make myself oatmeal. However, in the larger scope of world problems, watching my boyfriend eat chocolate covered cookies while my belly rumbles isn’t the biggest. Whether or not I can believe it some days, my bladder isn’t the biggest problem either.
And now I speak directly to Shelia: I am better than the bad things you tell me. So go away.
Love,
Sarah
Train Ride of Destiny Part II
It’s taken parts of my life away that I’ll never get back. I’ll never be able to just hop in my car and drive across the country if I feel like it. What will I eat? Where will I get water? What if the pain hits? Where will I find a bathroom?
Yesterday, I was on a train, the same one I took a year ago with Mike before he became my boyfriend. The Train Ride of Destiny, we call it. Then, I could still eat bread and pretzels and wheat thins and graham crackers. I hadn’t had a flare in half a year, and I was feeling confident again. Ready to venture out into the world.
It’s different now. I started getting too big again, so my disease cut me down to size. There I was with my thermos full of oatmeal the texture and color of vomit. The guy in front of me had a personal pizza, a chocolate chip muffin, and a Starbucks Iced Coffee all in fifteen minutes. I had two panic attacks before we got to Jersey.
This is life right now. Feeling like I’m unhinged, like the floor is constantly shifting under my feet. I tell my muscles to unclench, my breath to stop being so shallow, but it’s like I’ve forgotten how. How do I function? It’s a question I have to ask myself every single day.
I’ve gotten to the point where I don’t remember what it was like before my disease. I can’t imagine myself eating pizza or drinking soda without my jaw tightening as I imagine the war that would start in my bladder. Unimaginable pain. Please-kill-me-now pain. I don’t remember what my bladder felt like when it was full before; now I feel waves of penetrating, sharp pain. I’ve actually come to anticipate these little waves of pain because it means it’s going to be an average day – not too bad, not great either. It’s when I don’t have these waves that I start to panic.
All day yesterday, memories from my childhood popped into my head. I’d be looking out the window and see the blue sky and suddenly, I was in Disney World, a sixth grader with a fit and fast body, running and flipping across a cheer mat under the roof of the Indiana Jones theater. I was eating a chocolate Mickey ice cream bar; I was sitting in a car for twelve hour drive to wherever – Tennessee, Indiana, Vermont, Florida, Virginia – and couldn’t wait to feel the sun hot on my feet as I propped them on the dashboard. I was wearing jeans, which I haven’t been able to do in months.
I’m not excited to travel anymore. I’m scared. I’m terrified. I’ve started creating irrational fear-scenarios in my mind. I’m trapped in the subway and my bladder is burning and the roof is caving in, bleeding fire and smoke onto my lap. I’m on a train and the doors won’t open and the bathrooms are full and there’s nowhere for me to hide how much pain I’m in. I’m in Disney World watching my family eat big plates of bloody steak and suddenly, the burning starts. I’m nowhere near the hotel; there’s nowhere for me to suffer, to twist my body into pretzels of discomfort. There’s nowhere for me to peel my too-tight pants off. And every time, no one can see what’s wrong. No one can see because it’s trapped inside me and no matter how much I want to, I can’t get it out of me.
Today is even worse. I’m in pain while my boyfriend is off living (not that I blame him). The birds were singing this morning and his parents were bustling around the kitchen and for a minute, I thought I was fourteen again, a big Sunday breakfast of pancakes and bacon waiting for me on the table. I opened my eyes and reality sank onto my chest. It’s been hard to breathe all day.
Mom wants to go into the city on Saturday (she’s coming up to Jersey to see me), and I don’t know how to tell her that I just don’t know if I can. “Oh, cheer up. If you tell yourself you can, you can,” she’ll say. It’s always so easy when it’s not your own body. I wish it was as easy as telling my bladder to take a chill pill, or even taking a pill. The answers to health are floating like dust particles in the air; I keep snatching at the air and I come up empty-handed. So, for now, I’m crawling through life. I’m waiting for it to get easier, and have been for a year and a half.
I miss the way the world used to look. Hope is different now. Like everything else in my new life, there are limits. I used to have unending hope; I didn’t know better. Everything looks darker. The sun is dull, cold. The world is a little less like home.
I’m not giving up. That’s not what this is. I’m just trying to figure this – my life – out. I’m trying to figure out how to not be so angry at everything and everyone. I don’t want to be so grumpy and grouchy all the time. I don’t want to be scared of a subway car or a train. I don’t want a trip to the grocery store to be the equivalent of a sixteen hour plane ride. I don’t want to watch other people live while I sit inside and cry and beg and plead to be okay. Right now, I’m not okay. And even if I was, I don’t want to have to settle for “okay.” I didn’t have to settle before I got sick.
“Just look at the bright side.”
Why didn’t I think of that?
The Train Ride of Destiny
A year ago today, we accidentally ended up waiting for the Amtrak together. It was Spring Break in Vermont, which means artic winds and we were frozen, standing closer than two almost-strangers normally would. We’d seen each other around campus before; in fact, we lived in the same residence hall. Later, you told me that the only time we talked before that day was when we passed on the street. You said, “Hi,” and I said, “Ugh.” I think you made that up.
When we got on the train, you had the choice to sit next to me, the strange sad girl who lived upstairs, or your best friend and roommate, Liam. You choose me in a rare showing of bravery (and a not so rare show of utter stupidity). You spent the trip playing weird bandit videogames and I wrote sad poetry. You didn’t know it yet, but I was still with someone else. It was ending, slowly but surely, but you were walking into a trap. You always tell me that you tricked me into loving you, but I know the truth is that I tricked you.
When you got up to get off the train in Newark, you fumbled with your things for too long. You started to get off, then stopped. “Uh, do you want to maybe hang out when we get back?” I was shocked into silence, but managed a weak “Sure,” before you stumbled off the train, happy to have the words off your chest. I felt a little jolt, and it wasn’t the train lurching forward.
The first few weeks we were together involved awkward where-do-I-put-my-hands couch arrangements, a first kiss that felt like dead fish, and me looking at your head and wondering if it’d always been that big. You had no idea what to think, but even when I told you how crazy my life was right then with my Interstitial Cystitis, my breakup, my depression, you just smiled and squeezed my hand. On the phone one night after the semester ended, you told me, “I love you.” I didn’t say it back right then because I wanted to be sure. A week later, I was sure. When I said it back, you got so excited you said, “Hold my taco, I’m going to go dance,” and I’ve never laughed harder or felt so sure about anything.
Today marks one year together. One hard, sad, depressed, painful year that was made better by you. I look back and I don’t see the tear-streaked days spent wishing my disease would go away. I see you. I see us climbing that tree in Maymont, conquering the world. I see us running through the streets of New York City, praying not for rain in the sweltering heat, but the beautiful beacon of a Ben and Jerry’s sign. I see us watching episodes of Gravity Falls on an endless Saturday loop from the makeshift mattress fort we made on your bedroom floor. I see the rushed trips I took Downtown to surprise you with cupcakes. I see nights spent curled up close, mumbling incoherencies at each other until our stomachs hurt so much from laughing, we couldn’t move until morning.
You make every day better. Sometimes, you are the only good thing in my day, but without fail, you’re there. When I’m hurting, you come running. When I’m not hurting, you still come, and you bring warm cuddles and soft hands, a gentle reassuring that everything is okay. Everything is okay, Mike. I believe you. You make we want to believe, because with you, I see a life. We’re young, I know, and anything could happen, but just seeing that possibility of a life makes me hopeful that even my hardest days are worth it. I am honored to know such a kind, compassionate heart. I am safe in arms that are gentle, yet capable. I am laughing as I watch you parade around in my pink pajama bottoms and sheep slippers because you’re so comfortable with yourself. In a world where I am always uncomfortable, you are comfort wrapped in a sweet ribbon.
I am happy with you. I am loved. I am complete.
Happy Anniversary, Mike. Mrow.
(For you mere mortals, that means “I love you.”)
I would say PS, but post-script means that there’s been an ending, and there hasn’t been. So I’ll just say, please wipe the cupcake crumbs off your face, shave your chin stubble on this day of days, and remember that I think you’re the more incredible human in the whole world.
My whole world.
Finding Your Breath
ANDERSON, IN – It might be the bright red shock of hair that you can’t take your eyes off of as you sink into the new leather couch. Or maybe it’s the smoke curling slowly through the air from the end of his cigarette. Harley Davidson curtains, wall clock, figurines, and lamps fill the empty spaces of the large living room.
Trevin Wilkinson lets out a wracking, wet cough from the base of his tar-coated lungs. His face gets red and you know he never gets enough air anymore, not since the COPD. He’s your Dad, and he’s slowly suffocating.
“I started smoking when I was 11 or 12,” he says. “That’s probably the biggest mistake I ever made in my life.”
He stubs the cigarette out and you look at the tattoo on his arm of an eagle flying out over a mountain stream. You look at his left arm and see a skull riding a motorcycle. “I always wanted one,” he tells you, and now he has 12. Your favorite is the one over his heart with you and your brother’s names etched into his skin.
“We all have tough times,” he tells you when you ask how he’s holding up. “The strong get through them. Sometimes we just have to pick our battles, and not the war.”
It’s been over a year now since his wife died of cancer and it still hurts him. He doesn’t like waking up alone or coming home to an empty house. “I’m probably dying of a broken heart,” he says.
You look at the frayed recliner in the corner of the room that she always sat in, doing her crossword puzzles. “What did you love about her?”
A smile creep up onto his lips. “As long as we were together, we were happy,” he says. “Some people search and search and search forever and never find what I had with Teresa.”
He showed her a new world, one where fine dining wasn’t McDonald’s, fists weren’t used to solve problems, and the world didn’t stop at the Indiana state border. He knew he would marry her when “she took a pumpkin and made me pie.”
It’s his friends now that give him something to look forward to. That, and his three Harleys. Together, they form the River Rats, a motorcycle gang that does charity rides for cancer and loves to feel the wind in their long, luscious (sometimes braided) beards.
“Oh, we’re not a gang,” he tells you adamantly. “We’re more likely to stop and help you on the side of the road than we are to stop and rob you.”
But you knew that. He used to take you and your brother camping during the summers. He taught you how to ride a bicycle and when you got tired of patrolling the camp grounds, swinging your bag of Gift Shop candy, he let you tear streaks of mud through the backyard with his dirt bike. “I like every memory that I have of you two,” he says.
Growing up, it always seemed that he had friends stopping in to see how he was. He has more friends than anyone else you’ve ever met.
“Words cannot describe what a huge heart and feelings this man has,” his friend, Dawn Haney says. “When my grandpa passed, he immediately called to see if I needed anything.”
Just recently, he had a friend who started a new job but didn’t have money to buy steel-toed boots. “I bought her a pair of boots and gave her gas money for the first two weeks of work so she could get there and back,” he says. “I always try to help people who are in trouble.”
When it’s almost time to go, he turns to you. “Now how are you doing? I’m worried about you.”
You’re worried about him too. You don’t know how much time he has left. It’s getting hard for him to work as a plumber because the arctic air makes it impossible to breathe. He’s scared he doesn’t have enough money to support himself. You picture him as a 16-year-old standing tall at the BMX Grand Nationals in 1982, the eighth fastest rider in the country and look at the man sitting on the couch before you. He still has the Christmas list you made for him when you were eight, and you wonder if maybe you could have been there more for him.
He lets out another heart-wrenching cough and you can almost hear the tar clinging tighter to his lungs as he struggles to breathe. So much hasn’t been said. So much will never be said.
“You’ve lived a good life, though?” you ask him.
“Yes,” he says.
You breathe a little easier.
Sheep Slippers, Vaginas, and the Red Sea
Things I’ve learned this week:
- Sometimes, writing can be so emotional that it bleeds into my everyday life, making my body heavy, my mind foggy, my will weak. I’ve been working on a piece for my Creative Non-fiction class that has been taking such a toll on me that I cried myself to sleep a few nights and stopped doing my homework (which is really unlike me). I even wrote this email, word-for-word, to my professor (and actually hit the “send” button when I was done):
Hi there,
I was just curious if you had any advice for me. I’ve been writing this really emotional piece over the past week, but I’m finding that the emotion saturates the rest of my day too. The sadness has literally taken over. What do you do when your writing makes you so sad that you stop being able to function as a human? Yes, I’m serious. I’m okay, though, so don’t panic or anything. The firefighters are already here because I thought their hot bodies might make me happy. Wow, this got weird. I’m sending it anyway because my ability to make sound decisions has been radically reduced by sadness. Help.
Sarah
He was a true sport about the whole thing and told me it might be a good idea to set my writing aside for a while because I was working through some very early, very raw material. I did, and I’ve been better. Mike tagged me in this picture on tumblr a while back, and never has it made more sense to me than right now. Writing demands that I feel all my emotions at once, a flood of memories and hands and words and sometimes, it’s too much. It’s okay to walk away sometimes.
- Obama gets as mad when he can’t eat cookies as I do.
- When you walk through a grocery store taking photos of Chef Boyardee and Little Debbie cakes, people start to notice. Flashing them a smile convinces them of your insanity.
- I had to teach Mike that, yes, selfie sticks are actually a thing.
- My emotional fuel tank is either full or empty, never in between. And if it’s full, it’s full of carrots from the copious amounts of carrots I eat. I’ve started dreaming in orange.
- Valentine’s Day doesn’t require chocolate. In fact, not having chocolate means more money to spend on books. Mike and I went to Barnes and Noble and spent 50 bucks apiece on books for each other, and it was so much more romantic than chocolate-smeared smiles and belly aches. Take that Hershey’s.
- Now that I’ve quit sugar (2 ½ months strong), I haven’t caught any of the contagious diseases going around on campus. No strep throat, flu, cough, or stuffy nose for me – which is good, because I can’t take any cough medicines or lozenges (at all, period).
- My germaphobe problem has become just that: a problem. I make my boyfriend wear my sheep slippers to the bathroom now because I don’t want his socks to be on the bathroom floor and then on my bed. At least he looks cute in my sheep slippers.
- It was way easier than I thought to write a piece about my Dad for my journalism class. And it’s only a little sad and morbid, which is much better than how my pieces usually turn out. I didn’t kill off any characters, so that’s good, right? Right?
- My Mom can’t send a card on time to save her life. I will forever be getting my Valentine’s and Halloween cards a week late, but at least I get cards. She hasn’t forgotten me…yet.
- Vaginas are beautiful and we should all hail the vaginas (courtesy of the Vagina Monologues).
- Moses and Jesus are not the same person. Also, the Red Sea is not actually red.
- No one makes me laugh harder or smile wider than my boyfriend, Mike. To be young and in love is, well, really really nice. I would choose him over sugar any day, and there’s nothing more romantic/meaningful that I could possibly say to him (and he knows it).
So basically, this week I learned that the highs are high, the lows are low, and love is the only sweetness I need in my life. Also, bus schedules are never to be trusted. Like weathermen.
It’s Time to Let Go of My 4.0
This is the busiest semester of my life. I’m taking five and half classes, working three jobs, and trying to avoid a health crisis (which I feel I’m always on the verge of) while doing copious amounts of research to try and figure out how to pacify my angry body. Even typing it out is daunting.
I’m not complaining by any stretch. I’m lucky to have all of these opportunities to learn and gain relevant work experience while caring for an entire residence hall of young people every other night. I know I’ll look back and miss these days once they’re gone, but right now, I just feel tired. I want to be able to work on my own projects, to write and read what I want to write and read. If only I didn’t have to spend so much damn time on my five page CORE paper about Buddhism I might have time to read my first recreational book in…well, a long time.
But that’s just it: maybe I don’t have to spend so much damn time on the assignments that aren’t as relevant for me and the path I’m on. Ever since I was in eighth grade, getting straight A’s has been an expectation, a challenge I set for myself to see if I could do it. But I think it’s morphed into something even bigger than that. How I see myself – how much worth I have – is directly tied into the two-digit decimal we get at the end of every semester. For as long as I’ve had a GPA, I’ve had a 4.0 or better.
Sure, I can look at my scholarships and my awards and the gleam in my mother’s eyes and see what all those nights and hours and weekends at home have given me. But I also look back at how few friends I had in high school, at the proms and football games I missed. I went from being a middle schooler to being an adult, and the worst kind of adult: the one that doesn’t know how to have fun.
In essence, my 4.0 cost me a social life, but it’s also done more permanent damage than that. My brain has been wired to need praise. Only when praise results is an action worth doing. And that means I’m always seeking that next way to find praise. It’s like a drug, and vindication from others is my high. It’s not healthy.
To make it worse, I turn everything that’s supposed to be fun, like reading a novel or hanging out with my boyfriend, into something that must be productive. I don’t hang out to have fun; I hang out to fill the loneliness I feel, which will in turn allow me to get back to work. I don’t read for pleasure; I read to learn how the author used different elements of the craft to write a successful book.
I don’t go out on the weekends, and especially at night. I never had a desire to drink or party, and now with my IC, I couldn’t even if I wanted to. But it’s not the parties I feel like I’m missing out on. It’s the feeling of freedom, of spontaneity. When did I lose my sense of adventure? When did I become so scared of life that I hide behind my books?
The answer is, when I moved in the middle of high school from Indiana to Virginia. Everything changed for me, though I didn’t realize it at the time. My 4.0 became a way to fill the loneliness I felt. It became a way for me to fit somewhere, even if it wasn’t anywhere close to the rest of my classmates. It got worse when my IC developed because then, I was dealing with unpredictable pain that made even walking outside of the house daunting. It’s gotten a little easier since then. I’ve had some time to accept my new life, but even now it’s hard to muster up the strength and courage to venture too far from my comfortable dorm room. My busy schedule only makes it more challenging because my energy is often depleted and stress literally builds beaver dams in my lower back, making my disease symptoms flare (it’s a vicious cycle).
I’m so proud of the hard work I’ve done from high school up until now, but I think it’s time that I let go of my impossible mission to be perfect. It’s time I focus on healing myself and learning how to have fun again, no strings attached. It’s time to let go of my 4.0.
I don’t plan on letting my grades slip; there’s no intentionality here to damage or shortchange the hard work I’ve put in thus far. But next time I have the choice to read a book recreationally or fill in all the white space on my PR worksheets so I can get that little + at the end of my A, I’m going to pick up a book and let those words pour over me like a nice summer rainstorm. Some things just aren’t worth the anxiety I give them, and I’m ready to let go.
I’m ready to get that report card in the mail and see my Mom’s slightly less excited face, or hear my Dad over the phone saying, “You did your best.” I’m ready to be taken off the President’s List and have to settle for the Dean’s List. It’s not like the earth will stop turning if I don’t get straight A’s. It’s not like I’ll be any less of a person, or my accomplishments will mean any less. I don’t want my self-worth to come from anyone other than myself – not anymore.
I’ll always be a hard worker, and the results of that hard work can be seen in so many other places than just my GPA. It can be seen in the words that I type now, the words that’ll I type tomorrow and the day after that. It’s in the strength it takes for me to keep going even when it physically hurts. I refuse to be quantified by a number. I – we – are so much more – a set of actions, beliefs, values, dreams, skills, compassion – and none of that can be quantified.
By nature, we are too big for the binds we place on ourselves and each other.
I am too big to let the fear of a number define me.
I am too smart to let my life slip away with every A that slides across my desk.
I am worth more than an A.
I always have been.
My Name is Depression and I’m a Life-Sucker
I wish I could report that I’ve made a marvelous recovery in the past few weeks, which I’ve been desperately reaching and trying for.
But I’d be lying.
The truth is, life is hard. And not just for me, though my struggle has been at the forefront of my everything. Eating in the dining hall, hanging out with my boyfriend, walking downtown, sitting in class – it’s all been harder lately. A lot of that has to do with my attitude, I realize. I have a hard time being optimistic even when I’m feeling well.
But the real problem has been the flare-up of my depression. The sadness comes in powerful waves, overtaking me at unexpected times. A commercial will trigger a memory, the smell of the coffee shop will suddenly bring tears to my eyes. I’ll tap my foot on the floor below my chair, and realize I don’t feel anything at all. I look at my boyfriend, who I know I love dearly, and I don’t feel a damn thing. I’ll sit there during class and sift through memories of better times while trying to look through the blur to my future, so different from the life I used to lead. And frankly, I don’t want the life I’m moving towards. Every day, I move further away from the life I want and closer to this indeterminate future without alcohol on my 21st birthday, cake at my wedding, a potential inability to safely bear children. This life where even a picnic at the park becomes an ordeal, an adventure taxing on both health and nerve.
I lay in my bed at night and I wonder how this happened to me. Did I somehow earn this pain? Is this the cost of a happy childhood? Is this what I get for thinking I might be invincible? Did I deserve this?
My boyfriend is adamant that what has happened to me isn’t my fault, that I didn’t do anything to deserve it. I agree with him, but I still don’t have any way to explain it away. My bones ache as I reach for the answers during my yoga practice. The tears sit on the edge and watch as I spill over without them. My dry tear ducts just might be the most stable part of me right now.
It can be anything, but most often, it’s watching people in the dining hall eating brownies, chicken alfredo, steaming mashed potatoes with butter, cheesy pizza. My boyfriend will say something silly and I’ll take it the wrong way. I don’t mean to, but once I fall over the edge, it takes a long time for me to pull myself up. And sometimes I don’t want to. I don’t want to do anything.
I’m tired of being sad all the time. I’m tired of longing for food with every fiber of my being. I’m tired of standing in front of the dessert case feeling as my hand tries to reach for something sweet, but I swat it away and leave feeling dissatisfied. Angry. Empty. I’m tired of resisting. I’m tired of snapping at everyone and dreading the next day. I’m tired of thinking about how I’ll have to do this for the rest of my life, even if it does get easier.
I’m just tired.
I want to be able to go to a restaurant and order something – anything – off the menu. I want to go to the movies and be able to eat the popcorn. I want to go skiing and just take off on an adventure without wondering how I’ll feed myself, where I’ll find a bathroom and refill my water bottle, when I’ll cross my limits and my body will physically give out. I want to look into the future and not be scared, not immediately look at all the things I can’t do. I want to stop feeling sorry for myself.
The good news is, I started seeing a therapist on Monday, and I think it’ll be good for me. The hard thing is that a lot of my issues come from within, and only I can ultimately find a way to heal them. I really am trying, every single day, to look at the good things in my life. I keep a gratitude journal, I do yoga. But I also slip down the slippery slope at least once a day, and it can be demoralizing. And not just to me – it takes a big toll on my boyfriend that I wish it didn’t.
I hate being like this. I want to be strong, I want to be bigger than this. But my life has changed so drastically in the past two years, and it got turned upside down again when I started this new diet in December and quit eating sugar. The things I can do and eat changed again, and it’s a whole new way of life, a new world to adjust to. I have to find my new place in it, and I’m having a hard time finding the ground. I want to be on mile twenty-six when I’m really only on mile three.
My boyfriend says I already am stronger than my disease and depression. I haven’t given up. He’s right. I don’t have any plans to give up. But I’m in this place right now where everything seems tremendously hard. I don’t really know where I’m at or if I’m close to finding my way through this tunnel, but I’m still looking. Somewhere deep in my chest, buried beneath the fear and anxiety, the pressures of this new way of life, the feeling of constraint that squeezes the air out of me, the impenetrable darkness, there’s a fist clenched tight around something. It’s a seed, just waiting for a little nourishment.
I’ll name it Hope.
What Mom Was Trying to Tell Me
Following the beautiful letter she wrote me a few weeks ago, I’ve been thinking a lot about my Mom. Our relationship has always been close, but strained, especially as I grew up. I figured this was how it was supposed to be: teenagers distance themselves from their parents who try and cling to their children a little harder. There’s tension and friction and misunderstanding and pointed words.
Especially after my step-dad left, I noticed my feelings towards my mother change. Here she was, broken. I’d always thought it impossible; she was supposed to supermom! And she is, I know now, but she’s also superhuman just like the rest of us. She stumbles and crashes and picks herself up out of the mud. She cries and sings off-key and clomps her high heels around on the wood floors. She is ultra-perky when she answers the phone and she absorbs my hatred like a sponge. I never realized until now why, but when my mom talks with an edge of happiness in her voice – shocking, jarring when I first hear it – I get mad. Not just mad: furious. I want to hang up or yell back or push her off whatever happy shelf she’s maneuvered herself onto. She never understands why I always get so mad, and it’s only know making sense to me.
It clicked when I mentioned the Indianapolis Home Show and Disney vacations and all the fun things we used to do when I was young (but not anymore – our last vacation was six years ago). I knew vaguely what had happened: financial ruin. But Mom took it a step further. “We lived on fake money in those days,” she said, rolling up ribbon from the Christmas tree. “Credit cards.” Somewhere deep down, I think I knew that we were never as well-off as it seemed growing up. And when the new cars started disappearing from the driveway, when Mom went back to work at a call center and my step-dad stayed home eating pizza rolls in his office chair, I knew something had changed.
Now I see my mother. She’s beautiful. The edge of happiness in her voice covers up what else hides there: sadness, anger, fear. She tries to put on a brave face for us kids and for herself. Maybe, if she pretends to be happy, she will be. But she’s not. She works too damn hard and has had too much in her world pulled out from under her to be happy. But she’s trying. She’s really, really trying to find her way back to a place where she feels safe and can smile with ease, without that edge of darkness hiding behind every corner.
We’re in a similar place in the world, separated by thirty years and 850 miles. It’s taken this realization for me to see my mother for the woman she is, for how remarkable she’s been for me and for herself in the face of fire. She’s watched her life burn to the ground, and taken the embers along with her. Everywhere she goes, she leaves a trail of ash, of what is lost and gone and to be left behind. She has rebuilt a life, though far from perfect. She finds time to laugh and call me, and go out dancing. All the while the embers keep falling from her pocket. Maybe one day they’ll finally run out. She’ll look behind her and won’t see a nasty past, the ghost of a blazing fire, following her everywhere she goes. Instead, she’ll see memories of my sister, brother, and me. She’ll see all the things she’s accomplished and all the things she can do. One day, we’ll both understand that the bad things in our lives don’t have to be the biggest or brightest things. We can put the fire out.
We can put the fire out together.
I’m sorry now for all the years I thought I had my mother figured out when really, I didn’t have a clue what she was going through. I’m mad that I snapped at her on the phone almost every day – and still do sometimes – for trying to be happy and positive. In some ways, I’m jealous: I’m not nearly as good at pretending to be happy or trying to maintain a positive outlook as she is. But I’m learning from the best, the master who had me fooled for years. We all wear a mask. We all struggle. Compassion is what brought my Mother and me back together, to a place of understanding we haven’t had since before I was thirteen – if ever.
That’s it, that’s the secret to mending broken connections, to finding your way back to someone you may not even know you’ve lost. It’s how we’ll stop fighting wars and do away with a Congress that doesn’t care about its people. It’s the best mortar in the world because it’s the foundation: compassion.
I love you, Mom. I understand you a little bit better now and I’m rooting for you – for us. Let those embers fly from your pocket so we can dance on them.
All the Strength of a Hollow Oreo
My Interstitial Cystitis is restrictive, four glass walls and a ceiling that let me watch life going on all around me without letting me be part of it. I don’t feel like an active participant because the walls are always there, creating distance, holding me back. I watch others run, skim a rail with their skateboard. I see people laugh so hard they hold their side. I see them smile to themselves at some private joy. I remember what it’s like.
This week has been hard. It was the first week back at school, a new schedule – busier than ever – and my body has protested all the way. I wish I could be home with my mom and sister. I wish things weren’t so hard, even if somewhere deep down, I know they’ll get better eventually. But there’s been another dimension to my life, one that no one but me can see. I haven’t had sugar in four weeks now, and the cravings are enough to make me crazy. I sit in the dining hall with my tilapia and green beans watching people around me shoving pizza in their faces, slurping ice cream from a cone, cramming cookie after cookie into their mouths. They don’t see it, but something tightens in my chest. It’s me, banging on the glass walls of my cage. Let me out, I beg them. I want to be like you.
It can be something as simple as shifting against my pillows while I’m doing homework. A memory hits like a dark cloud releasing all its rain in one swift go. I’m in Garfield’s with my dad on one of our Daddy-Daughter dates, a plate of steaming pasta in front of me with garlic bread and a tomato-alfredo sauce. I’m spearing noodles with my fork, tasting them, savoring them, hoping the bowl will never run out. I remember thinking they were the best thing I’d ever eaten. The rain stops as suddenly as it started and I’m back in my dark room.
I see a post on Facebook of college cheerleaders competing in Disney World and I’m there, seven year old me sitting at a table in the Floridian Hotel, all my family surrounding me. All the Disney characters, Mickey, Minnie, Piglet, stand around me singing “Happy Birthday.” On the table in front of me, a chocolate cake with a candle and a strawberry, all drizzled in chocolate sauce. Then suddenly, I’m on the beach in Estero Island, sucking the head off a gummy shark. I’m in the car at a gas station on my way to Grandpa Bob’s house in Florida, licking the sugar off a Life Savers Sour Gummy. I’m in the Sci-Fi Café, creamy mac and cheese shaped like hidden Mickey’s dribbling into my lap, the sound a black and white cartoon filling the space around me.
I lay in my bed, staring at the wall. There’s the art I made just last week using words of strength from my mother and pages of my old cookbooks. Sometimes, I’m not as strong as I want to be. I lay there, wishing, craving to go back. I reach out and touch the glass walls of my cage and I’m in my babysitter, Sandy’s, house. I’m four, eating my favorite pasta, Three Cheese Rotini. I remember when Lipton stopped making it: I was devastated. My boyfriend leans over to whisper in my ear at dinner, “Are you okay?” I’m eating the gel icing off the ice cream cake my Dad got me from Dairy Queen for my birthday, I want to tell him. “I’m okay,” I say instead.
I can hear the chips crunching as I bite into them, covered in melted cream cheese, spicy sausage, and Rotel chilies. The feeling of being warm and full. I’m staring through the case at Good’s Doughnuts, my mouth watering with anticipation for a Maple Doughnut and a Tiger Twist, a tall glass of Dean’s milk. I’m sitting in Apple Bee’s, swirling pasta on my fork, wondering if the world is going to end as the Mayans predicted. I take a bite while Blake Michael says something, but I don’t hear him. I laugh like I do. I peek into the oven, watch the cookies turn golden brown before my eyes. I watch the cheesecake cool on top of the stove, admire it’s perfectly smooth top. I drizzle chocolate over my bite-size cakes. I swirl icing on my s’mores cupcakes, crumbling graham crackers up and sprinkling them across the counter, stepping back to see the sandcastle cupcake tower I made for my sister’s tenth birthday.
I can’t remember the last cupcake I ate. The last brownie, the last chocolate chip cookie, the last doughnut, the last slice of pizza. I didn’t have any reason to savor them, to save the memories away so I could take them out and admire them later, like a photo of an old boyfriend. I watch others making the same mistake I did every single day. Savor that, I want to tell them. It really could be your last.
Just last summer, I tried Annie’s White Cheddar Shells Macaroni and Cheese without consequence. I survived on it all summer, hardly tasting it. In November, I ate a bowl of Annie’s and the next morning, was in some of the worst pain I’ve ever had. Just like that – gone. I still have eight unopened boxes of the stuff in my room.
I sit behind my glass walls wanting – begging – the memories to stop. You’re looking the wrong way, I want to tell myself. You’re missing now. But I don’t like now. I like then better. I like picturing a food and being able to taste the ghost of its memory, because it’s all I have except the fish and oatmeal I survive on now. I stop living when I start remembering.
There’s so much to still be thankful – my fish and oatmeal – and I know that, but I don’t want to give a false impression by ending on some cliché note of positivity. All too often, people hide behind their computers, making their lives seem much better than they are. I’m in a hard place – a place full of self-pity and grief – and I’m not ashamed of it. It’s hard to be strong all the time; sometimes, I want to be weak.
I want a basket of fries from the Flyin’ Pig and a smoothie from Planet Hollywood and a milkshake from Steak and Shake. I want an entire Pizza Hut pizza to myself, a whole elephant ear from the Indiana State Fair. Hell, I’d even settle for a piece of Mom’s homemade peanut butter fudge. A can of Chef Boyardee. An ear of sweet corn. Pancakes slathered in maple syrup. A whole pan of hot cinnamon rolls, the icing dripping down the sides. A box of Fancy Cakes, oatmeal cream pies, a plate of turkey manhattan.
I’m so thankful for my memories, but they also haunt me. They fill my glass cage with tantalizing smells, the faint sensation of taste on my tongue, reminding me of what I’ve lost and didn’t appreciate even when I had. They’re reminders of the hardest lesson I continue to learn every day.
There’s strength in the glass walls that hold me back, seeped from my tired bones. Today, I don’t have the strength to push back.
And that’s okay.
The Write Hodge Podge 