Life Behind Lids

The world is black and white, shades occasional but there and not here

My eyes they see in color, closed but not asleep

Opening them up, the world goes back to blank, words reflect no color, reds they show no hue

A person whispers words that mean nothing with eyes wide open

Your lids flutter closed and the mumbled thoughts become clear, you nod along understanding

You lay there in the dark, remembering your day, realizing things you never saw before

Seeing the things hidden behind the bland teacher’s musings

Find the hidden joke, insult or brokenness behind a friends interested trill

With eyes closed, blocking out the light, the brightness is blinding

Perhaps it’s a trait of the introverted type

Maybe everyone has discovered that the world is two-D, and it’s one of those things passed over but never discussed

Playing scenes of conversations long passed, clicking your tongue, I should have said that instead

The question asked in class, made a fool out of you, you knew the answer after all

I refuse to open my eyes, I hiss

My hidden world is too complex to leave, too bright and bold to clash with grey

Too pure to splash with fake laughs and comments directed to kill

Other people’s eyes give away too much, they don’t know how to have them open without hiding

I am convinced that I am clever

My eyes show nothing that I feel or of what they have seen in the dark

My talent is one envied by many, criticized by some, and not believed by those who know me so well

It is not a secret that the outside skies and trees and flowers and oceans reflect some of the beauty within us

That beauty is not reflected in the harsh words and squinted vision of those I pass in the day

You pass in the day

We pass in the day

You are

We are

The vision of parents is helpful to children, they are blocked off from the world we see, the passcode changing between generations, kicking them out to let us fill their still warm places

They are blind to our words, secret meanings behind a tone, glint of the eye that means so much

They think they are wise, that they have lived it once and know all our hidden expressions

The truth is though, that those of us that wear these hidden expressions know not what it is that they mean

I am colder wide awake, eyes open to the world

Warm in the comfort of my dark lightness

Dark lightness is what it is, a darkness that lifts the burden of searching from my shoulders, giving my conflicted memories a rest as I dissect each thing moment by moment without any struggle

As hard as it is

The lack of fun we often associate with our eyes open

Is worth it, you see

For we all see what is out there without always needing the comfort of our closed eyes to see how the day has gone by

Your eyes

My eyes

Our eyes

Their eyes

Open to see, but never understand, even in the quiet, closed off comfort of the life behind lids

I Dissent

Last night, I sat in my room and watched the live feed of people gathering on the steps of the Supreme Court. They lowered the flag and lit candles, clustered in groups with signs bearing their own words of mourning and her words of courage. I watched this happening on my little phone screen, and I wanted so badly to be with them there in the city I called home for a year and a half. I wanted to hear the hushed conversations that were taking place on the steps of the building that upholds and protects. I wanted to be part of the moment our country needed to take.

Ruth Bader Ginsberg said, “Dissents speak to a future age. It’s not simply to say, ‘My colleagues are wrong and I would do it this way.’ But the greatest dissents do become court opinions and gradually over time their views become the dominant view. So that’s the dissenter’s hope: that they are writing not for today, but for tomorrow.” She dissented for us–for what she saw as tomorrow, the future, the next generation–my generation.

And now we dissent. We have watched key figures like RBG represent what and who we can be. We have seen our potential for change. We have witnessed tragedy after tragedy. But she also said, “So often in life, things that you regard as an impediment turn out to be great, good fortune,” and I believe that my generation has the willingness to take all of the impediments and make them what we want them to be. 

“Fight for the things that you care about, but do it in a way that will lead others to join you.” RBG did that. And she showed us how to do it too. My generation is full of leaders who are ready to make lasting change and equally full of people willing to follow. We dissent, but more than that, we are beginning to find solutions. 

I believe that our country needs to make changes in healthcare to better meet the needs of those Americans living with chronic health conditions. I dissent, and I will fight for healthcare reform.

My best friend believes that we need to stop spreading the false narrative that renewable energy isn’t doable and will not make a difference. She dissents, and she will fight for renewable energy. 

There are young protestors in my city who believe that black lives are being oppressed. They dissent, and they will fight for black lives.

People believe that life begins at conception and abortion is wrong. They dissent, and they will fight for the unborn.

America is a place where we have the freedom to dissent. Ruth Bader Ginsberg was a beacon of light in this country, guiding my generation in what it means to uphold truth and show leadership. She represented courage and family and justice and the power of being a woman. She will be remembered.

The One With the Wave

Hey Friends,

Are we friends? I hope we are. 

I started this blog a while ago with the intention of creating a community. And in some ways, I have. I’ve created a place where I feel comfortable sharing my life when words bubble up inside of me that need to be said. I know that there’s a place now where I can share the hardships I’m facing in a way that maybe people can better understand. Okay–so maybe I have an audience…but not so much a community? 

Being chronically ill is isolating, y’all. Even before COVID forced me to further close my circle, it was hard for me to make friends. College kids want to go out and do things. They want to go to parties and get drunk. They want to stay up late. They want to walk places instead of spending what little money they have on Ubers. They want to eat pizza. 

And on another level completely, most people my age just haven’t lived as much life as I have. I know very few other 20 year olds who spent high school fighting for their life instead of making stupid teenage mistakes. I watch my brother go to school every day, and I think about how it may as well be a different building than the one I occasionally walked the halls of. He’s an athlete, and everyone knows his name. He goes to parties every weekend. His Instagram posts get over a thousand likes. And I wonder what it would be like to never have to feel alone. 

And now in virtual learning, I’m thriving on an academic level. I haven’t missed a single class, and we’re five weeks into the semester. That’s huge. That’s amazing. This is the first time I’ve done that since elementary school. 

Socially? There’s a girl in my Policy class who I would totally want to sit next to and talk to after class. How do we do that with Zoom? Should I send her an email and be like, “Hey! I know this is weird, but you’re the person I’d want to sit with in class, but clearly times are strange. Here’s my phone number instead”?? Is that what I’m supposed to do?

I need people. I need them. But I am painfully shy. I am so introverted. I am so afraid of judgement. Of being abandoned by yet another person who thinks they can handle my baggage and then gets scared off. Of someone thinking I’m cool and then realizing I’m flakey. Of one more human calling me “crazy” for the disabilities and mental illnesses that are outside of my control.

That’s why I started this blog, I think. Really. Ultimately. Yes, I love that I have been able to share my life with so many of you who needed or wanted to better understand. Yes, I love that so many old friends and family members who are a little too distant to talk regularly are now back in the loop. But I need some community, guys. So I’m hitting my little “wave” button. This is me waving. Share my blog with people you know who are in similar situations. With chronically ill friends. With student friends. With young adult friends. With dog mom friends. With lonely friends. I’m here for it. 

Love you, see you, bye,

Emma ❤

Why Do We Do It?

Sometimes in chronic illness we show up to class looking like a junky because we haven’t slept in too many days and we need something–anything–to reignite our will to live despite how hard our body is trying not to. We have to pull out the big gun busy toys to distract our Service Dog from his incessant alerting just so we can at least take notes on the lecture to go back and read later since nothing is being absorbed real time. But we do it. 

Why do we do it? Because I’ve been a Christian my whole life, and last night in a class focused around Biddhusm, I learned that there was an entire period in history that Christians were divided between positions–”that Christ consisted of two distinct persons, one human and one divine” and “the rival ‘monophysite’ position, that Christ was the eternal Divine Logos, incarnate as a human being.” Where was the Trinity? I dunno, but I’m gonna keep showing up to find out.

Why do we do it? Because last week I learned that at one point in the mid 1900s, General Motors had more officers in their private police force than all but the five largest city police departments in the country. Why? Like. Why? I need to know.

Why do we do it? Because three of my classes have asked me which of the three branches of the United States Government holds the most power. My answer changes with every textbook chapter we read. What does that say about the way were were set up? I think that was the intention?

Why do we do it? Because I am REALLY bad at Economics. Really bad. And I cannot afford to miss that lecture. 

We do it because fighting through the pain, the nausea, and the fatigue is worth it for the prospect of learning something mind blowing, world shifting, or thought provoking. I haven’t given up on the idea that I can still make an impact on this world despite my body being a less than stellar vehicle to get around in. So I’m gonna keep turning her engine over until she starts up each morning and gives it her best go. Charge her battery, give her some gas, and hope she keeps making it to the next stop along the way.

Mighty AU Eagle

“Hey, I’m Emma. I think I’m technically a Sophomore in CLEG. I’m studying from my house in Alabama this semester, and I am really excited for classes to be back.”

I got to say this in four different classes this week. I got to say this in four different classes this week because I am officially off of Medical Leave. Surprise!

Throughout the Coronavirus confusion with the universities, my university, American, was one of the last to decide what their plan for the fall semester would be. It was not until the first week of August that President Burwell made the final announcement that AU would be holding an entirely virtual semester with no one allowed on campus. Because the decision came so late, I had to do a lot of last minute scrambling to get myself ready to be a full time student again. Phone calls had to be made. Emails had to be sent. Doctors had to be convinced. Schedules had to be figured out. It was all a whirlwind. And even then, I wasn’t sure that it was actually a good idea. I’m still not.

As everyone else was posting their first day of class photos, I was still working with the Dean of Students Office to get the hold taken off of my student account and finalizing my schedule. I had to promise my team of physicians that I’d be taking classes from the safety of my home. I had to make sure that my previous accommodations still meet my needs. I had to go through the process of telling an entirely new set of strangers that I may or may not have a seizure on a screen in front of everyone–no worries.

My cortisol levels are off the charts low. My Crohn’s is in chaos. 

But I’m going to learn about how religions spread around the world from the lens of Buddhism. I’m going to be exposed to policy and the things that create it. I’m going to begin seeing the interworking of America’s legal system. I might even start to understand economics? 

“We are the mighty AU Eagles

If there’s a fight we’ll see it through”

AU isn’t really the type of university where you walk around campus and hear the fight song. And in the time of COVID, there’s even less school spirit. But these words have been standing out to me ever since I decided I would try to go back to school. I love being a student, and if to return to classes, I have to fight my body a little bit harder than I was last week, I’ll do it–diagnosis be damned.

Still Breathing

I’m writing this from the car on the way to my gastrointerologist’s office. I woke up this morning in a good mood. I laughed with my best friend about the way that she talked in her sleep last night. I told her about the latest show I’ve been binge watching through my insomnia.

I felt nauseated enough first thing to take Zofran with the rest of my morning meds. My abdominal pain has been at a higher level than usual the past few days. I haven’t had a real appetite in weeks. In the past 24 hours, I have had six bloody stools. It was while I was joking with my best friend that the nausea turned into a certainty that I was going to throw up, so I rushed to the bathroom. I got very sick. I came out of the bathroom disoriented, clammy, in excrutiating pain. For the first time since my Crohn’s diagnosis in 2014, I asked my mom to take me to the Emergency Room. Instead we’re going to see my doctor.

💛spero💛

I’m writing this from the hospital. My doctor sent me to the Emergency Room after all. They are doing a CT with contrast and labs. The saline drip is cold. The contrast set me on fire. All I want is to sleep. I can’t talk through the nausea.

💛spero💛

I’m writing this from my couch at home. Cabbage is curled up on top of me. I’ve had a long day. I’ve had a hard day. The doctor’s at Grandview ran their tests, determining that I have severe inflammation throughout my intestines with specific proctitis. This has caused my bloody stools, which has led to anemia. It’s one hell of a Crohn’s flare.

As I’m writing this, I’m thinking about all of the things the past year has thrown at me. I’m thinking about the adventures I had last August and September in D.C. with my friends. I’m thinking about how much I have grown with each new challenge. I’m thinking about the inner peace I have had to come to as my life plans just keep changing. I’m thinking about what I want to come next. I’m thinking about all the things that could possibly be next—whether I want them to be or not. I’m thinking about how I’m still breathing, so ANYTHING could be next.

💛dum spiro spero💛

While I breathe, I hope. And friends, I am still breathing.

I’m Sorry

A few days ago, the guy who I’ve been talking to shared with me that he would be playing at an open mic night in Auburn, a college town a couple hours away from where I live. My first reaction was joy. Of course I wanted to see him play. An outdoor show. I had nothing else going on Saturday to take up spoons. He could drive me there and back. I told him I would ask my parents. I was excited. 

And then the anxiety set in because ‘oh yeah, we’re living in a global pandemic, and I’m really quite sick’, so…I ghosted him. For two days. 

Then this morning–the morning of the show–I woke up feeling good. The kind of good that I hate to waste. So after five missed calls and seven unanswered texts, I decided to be super cute and text this guy like I hadn’t dropped off the face of the planet two days earlier in the middle of making plans. Like a good sport, he responded without being mad, and he answered all of the questions I threw at him about the gig. 

We were going to leave at 2:30, head to Auburn, the music would start at 6, the competition part would last until 7:30, and then the winner would play until 11. If he didn’t win, we could leave before then. The event would be outside at a cigar bar. He could get me in even though I’m not yet 21 because he knows the people in charge. We would tell people to keep their distance if they got too close. He kept telling me all the ways that it would be okay, but I kept holding off on giving him a firm decision. Everything was going to be totally fine. I kept telling myself that as I started to get ready–still not saying yes or no.

I finished getting cute. Like real cute. 

But my anxiety was getting steadily worse. 

“If I had to pee, I would have to go inside and use a bar bathroom. In the bar bathroom, I would get the Coronavirus. Once I got the Coronavirus, I would definitely die.”

“When the sun goes down, I’ll start to get chilly. Even if I bring a sweater it might not be enough to keep me from getting a real shiver like I sometimes do. If I get that shiver, I’ll probably have a convulsive seizure. He doesn’t know how to deal with that.” 

“What if Judas doesn’t wanna be out anymore and gets real angry? Again with the bar bathroom. I am not throwing up or having violent diarrhea in a bar bathroom. I am also not unbuttoning my jeans while I’m out in public with a boy I like. Oh God. What if it’s a doubled over at a 90 degree angle kind of pain night?”

“What if this is the night that I go into adrenal failure and need my emergency injection and I’m two hours away from my parents and my hospital and my medical team?”

And then my Blood Pressure dropped to 73/48.

Obviously, I can’t go with a boy to a bar two hours away. It was silly for me to think that I could. I sent him a text that said: “i can’t. it’s a bar bathroom if i have to pee. you’d have to leave if i needed to go to the hospital. i’m sorry. i’m really sorry. i’m too sick for this kind of fun adventure. i PROMISE that i will be at the next one you do in bham.”

His response? “Ok. I had no expectations.” 

Let me tell you. That stung. But the hurt came when a few minutes later he followed up with, “I just don’t get why you tried to come if you were going to just change your mind.”

Y’all, I am a twenty year old girl. I have been single for a little over a year. It is the beautiful summer time. It is so easy for my mind to get carried away with fantasies of getting dressed up and going out with the boy I like to hear him play at a bar’s open mic night. That is a normal thing for someone my age to enjoy doing without a second thought. ‘Oh that sounds like fun, let’s do it!’

That’s not my life, though. Even if I had decided to go tonight, it would have taken thought and planning. I would have had to decide if I wanted to take my wheelchair–on a first date. I would have had to pack a bag for my Service Dog and made sure he didn’t overheat, have an accident, or cause a scene because he’s never been to a live music show. I would have had to make sure I had all of my dinnertime meds and a snack to take them with, plus any extra meds I might need in an emergency. I would have needed to take my sweater even though it’s 94 degrees today because I can’t regulate my body tempurature. I would have had to call my friend in Auburn to make sure she would be okay being on standby to come get me if my body crapped out and couldn’t handle being at the event the whole time. I’m sure I’m forgetting things as I’m typing this and also that this list is getting boring, but you get the point.

I am so sorry that I let my friend down by not being able to go with him to his show. But I’m also a little sorry for me. And that’s okay. I’m not ashamed of being sorry for me. Because it’s sad. It’s hard. I’m sorry that I missed out on a fun night. I’m sorry that I didn’t make new friends with his friends. I’m sorry that I’m not in the crowd clapping for him. I’m sorry that I got cute for no reason. I’m sorry that I’m not gonna get kissed tonight. I’m sorry that I keep letting people down when they want to make plans with me, and I’m sorry that I carry so much guilt for that when really I have no control over it.

I’m sorry, Mark. 

But, Emma, darling, I am so fucking sorry.

Isness

My 90 year old great-grandfather joins our group of early morning coffee drinkers, making it a four generation circle. “Good morning, Grampa!” we all say, and someone asks, “Did you have a good sleep?”

“I must have,” he answers just as he does every morning. He’s smiling and cheerful and holding his cane but not using it.

My mom looks up at her grampa. “Can I get you a cup of coffee?”

“Oh, no,” he shakes his head, “I’ll get it myself.” He pauses a beat before adding, “I was thinking this morning that I’ve become more of a presence than a participant.”

None of us really know how to respond to this. We take it in, and I know that I am thinking he has taken care of all of us for 70 years–it seems only right that we carry his heavy bags, mow his lawn, and fetch his cups of coffee. My aunt says that he can do more. My mom laughs and tells him he can get his own damn coffee.

My sweet grampa smiles bigger and tells us, “It’s not a statement of unhappiness. It’s just a statement of isness.” 

Y’all, how good is that? How graceful? How wise?

My grampa’s 90 years have made him more of a presence than a participant and that just is. I can relate to that so much in my own way. Sure, I don’t yet have 90 years of life giving me a free pass to “sit this one out” or that have earned me the privilege of being waited on, but my illnesses weigh me down to the presence status. I used to resent that. I used to not be able to grin about it or accept the isness of it. I thought about my lack of participation with nothing but unhappiness. Not my great-grampa, though. It’s a state of isness. 

He does what he can, and when the battery on the weed eater gets low, he takes the time that it’s charging to charge his own batteries. He fills his role as storyteller, and he watches and listens to as we create our stories. He makes himself laugh. He teaches us to mix the perfect drinks. He passes on his knowledge. He loves.

I want to share the gracefulness of his isness, and I think spending time with him is helping me get there.

Like the Wind

There are these wind storms that sometimes come up when we’re on the island that are truly awesome. The trees lean as though bearing the burden the gusts put on them will bring them to the ground. Waves crash against our island and the ones scattered around us in the most painting worthy ways, warning us to not so much as attempt crossing the lake. Our belongings have to be brought inside, and all of the windows and doors must be shut up for the duration of the storm. If you have to walk across the island for any reason, you feel like your feet could be blown out from under you at any moment. Mother Nature is offering a beautifully sung reminder that she is stronger than years of root growth, any boat or captain’s skill, the screens protecting the cabins, and your footing.

a wave crashing against the shore in a wind storm

I’m laying here listening to one of these storms. The wind is making it too cold for me to do much other than burrow deeper into my blankets and get more lost in my thoughts. Watching the trees submit to the power of the gale and the way that the current in the lake  is moving in what seems to be three or four different directions has me contemplating the way that a flare stages its attack on my body. My brain has built up this idea that it is shockingly similar–this storm and the cycles of remission and flare. 

Yesterday there was a beautiful calm. The water was a perfect glass. Only the occasional breeze made itself known long enough to keep the heat from becoming overwhelming. My body sometimes settles into this same calm. These are the stretches when my pain stays at a steady six. There’s no blood in my stool. No intestinal blockages. I only double over if I eat something I shouldn’t, and really that’s on me. These are the times when my joints stay where they belong instead of popping out or grinding just along the edge of the socket. Swelling is minimal, and the knots in my muscles are comparable to what one would expect to find after working out or sitting in certain positions for too long. There are weeks between seizures. My migraine injection is doing its job. The calm is remissions from the various storms that threaten to bring me down. Remission is so so good.

When remission comes–from one thing or from all of them–I celebrate. On good days, I don’t use my wheelchair. On good days, I cook and bake. On good days, I lay out by the pool. On good days, I visit with my friends. On good days, I can be active with my family. On good days, I go to my brother’s lacrosse games. On good days, I work and play with my Service Dog. On good days, I dress cute and do my make up. When remission comes, I can remind myself that I am still a whole person with a full life.

Today the wind is howling and the water is white capping. It’s too cold for me to even sit outside, and my pain is at about an eight. There has been blood in my stool off and on for about three weeks now–most likely due to a lesion in my small intestine from a Crohn’s flare. I’m having trouble digesting solid food, which means bathroom trips within fifteen minutes of every meal I decide looks good enough to eat. There is pain everywhere, but like the trees that are leaning with the burden of the wind, I am bearing it instead of breaking. There have been many stretches in the last few days when my migraines have kept me hidden in bed, tucked away like the giant waves are keeping us from leaving this island. We get used to the constant gale, and then there will be a sudden gust of stronger wind that blows in like a seizure. My mind thinks this metaphor is clever. The wind storm is flaring, and so am I.

A few weeks ago, the wind came up with a strength that knocked over a pine tree that had been standing on this island for as long as anyone could remember. The speed of that strom’s gusts–it’s pure strength–was enough to create a mess of debris that we are still cleaning up weeks later. I am all too familiar with the flares that come on strong enough that I can’t fight them off. They land you in the hospital or make it so that you are truly bed ridden. The people around you have to help pick up the pieces of your life that have fallen apart around you. The flares that attack with this much strength are the storms that blow shingles from the roof and bring down hundred year old trees and rip boats from docks or even docks from shore. They disorient and mean recovery time that could last days or months before all evidence of the storm has been patched up.

Flares are hard. Flares hurt. I don’t want to move, and I don’t want to do anything, and I don’t want to talk about it. I keep moving, and I keep doing anything that I can power through enough to do, and this is me talking about it so maybe people can understand.

The wind outside is awesome, and honestly, so is my body.

My Island

I used to run around this island

and swim off the dock.

I used to rock climb

and pick blueberries.

I could paddle a canoe.

I was strong enough to ring the dinner bell

and wash the dishes when dinner was through.

I was awake longer than the sun.

a picture of the sun setting behind Norway Island

Now I am a poet,

a napper,

a baker,

a pill popper.

I am a dog mom,

a blogger,

a wave watcher,

and a blanket hogger.

a picture of me dressed like it’s winter…only it was taken in June

My island gives me views

no matter where I am.

I can step on a flat rock without leaving the porch,

and fresh blueberries are brought to me.

I drag my fingers while others paddle.

I hear the bell chime,

and I wait for the gathering of loved ones.

I see the sun setting as I drift in my own way.