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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.
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?
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.
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.
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):
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.
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.
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.