Vibrant

Last night I walked into my parents’ bedroom to get my dog for night night because sometimes he’s a traitor and wants to cuddle with his Mini. Whatever. Who can really blame him, right?

But. I was standing at the foot of their bed, and my mom goes, “You look, right now in this moment, the best you have looked in YEARS.”

I have not showered in a few days. I’ve been having stress rrhea like crazy all week. There’s a 15 page policy paper that really needs my attention. As a government major, the next few months are going to be nutso, and honestly–should I still be government major??? Will that still be a thing come Inauguration Day??? I am a VERY new business owner, still learning the ropes and begging people to come be my customer. I 100% dislocated my hip on the couch less than a week ago.

Ya know what, though? I spent four hours last night worshipping Jesus at the TOP of my lungs, occasionally dancing out of my room to refill my cup or take my own dog outside when he had to potty. I had a three hour business meeting with my LuLaRoe Sponsor this week. I participated in my first Live Sale at 8:45PM totally spontaneously–after walking up stairs! I’ve stayed caught up in ALL my classes. And my mom says my color is good.

The report on my color a year ago? Grey. I was grey. I am not grey anymore. I am vibrant. I am FULL of life.

So thank you, Mama. Right now, this moment, in these gross jammies, with my greasy hair, and my GIANT FREAKING SMILE, is the best I have FELT in years.

One Year Later

I woke up today.

Read that again. Celebrate with me. I woke up today.

I woke up today because one year ago, I admitted that it was time to accept help and move home to start the process towards recovery. Still in Adrenal Crisis, but no longer in Adrenal Failure, I left DC and allowed my parents to do what they have always done best: love me and care for me.

That first week at home, my Da was around to help keep me alive so that my parents could go to work. I don’t remember anything about him being here other than that every time I woke up, he was trying to force food down my throat. It made me angry. I am so incredibly grateful for it now. I also remember that at some point in that first week, my life line arrived. My Cabbage moved in and he has not left my side since. The only other memory I have of the first few days back is sleeping on the couch in my parent’s bedroom like I was a little kid because I couldn’t be left alone for any period of time.

So much has changed. I have come so far.

Today is Halloween one year later, and I feel good.

I am winding down my first semester back in school. I spend time at Roverchase, sometimes volunteering for the Roverchase Foundation. And I am officially announcing that this week I started my own business!

I am thrilled to be telling you about Well-Being Wardrobe, a small business where I am all about empowering women to be well through stylish comfort. We will feature the LuLaRoe clothing line and handmade happies. Go ahead and like my business on Facebook, and follow @wellbeingwardrobe on Instagram and Well-Being Wardrobe on Pinterest. Be looking for it to go live in the next few weeks! I am so excited about this new adventure in my life. Let’s be well, together 🙂

What A Year Can Mean

10/20

October 20

20 October

I’m okay. I’m fine. I’m good. And the thing is–I really am. I was admitted to the Epilepsy Monitoring Unit at UAB Hospital at 8 o’clock this morning. I have 29 wires glued to my scalp where a nice young man scraped the top layer of skin off to accommodate them. There are two more attached to my chest along with five that belong to what I think is a heart monitor–though a nurse came in to do an EKG a few minutes ago, so maybe not? Earlier today, three nurses were putting in my IV for emergency access and blood draws. They had to stick me six times, blowing four veins in the process. So far, I have done the flashing lights and hyperventilation. One of them triggered something because we got an event–yay! Sleep deprivation is on the agenda for tonight. But I really am okay. 

I’m smiling and laughing. I’m joking with the people who are in and out of my room. I might be flirting with my cute night nurse a little 😉 I’m not mad that my mom went home to sleep in her own bed for the night. Maybe I have epilepsy. Maybe I don’t. Either way–I’m good.

But a year ago? I definitely was not.

One year ago today I was also being admitted to the hospital–crazy, I know. I was 800 miles away at Georgetown Hospital in Washington, DC. I was in Adrenal Failure, and I was going to die. 

You’ve read about the night I gave up on my bathroom floor and admitted I needed help. You know I called home and that my parents told me it was okay to take a break and get better. I told you how a week later I was in the hospital fighting for my life. This is it. This is what happened.

After that night, I wrote a Patient Portal message to my treating Endocrinologist asking for guidance, and when I didn’t hear back from her after a few days, my mom called her in a panic. It was Monday, October 20, 2019 when that lovely doctor called her back and yelled at her that I needed to go to the Emergency Room immediately based on the symptoms we had reported. Turns out, she had left me a voicemail too–oops. So Makayla packed me into an Uber, and we headed to Georgetown’s ER, where we sat–for nine hours. 

I’m really really tough, guys. I power through a lot. I wear many masks. I put on quite the show. Apparently, all of these things were good enough to fool the ER staff. However, blood doesn’t lie because as soon as they started running tests when they finally got me back everyone went into full panic mode. Doctors and nurses started apologizing profusely for how long I sat and waited–seriously, there was actual groveling. I was rushed into the FIRST room that became available–on the post-op floor??? I got ALL the good drugs. A nice human sat on the edge of my bed and did that terrifying thing you see on TV where they put their hand on your leg and say, “We’re doing everything we can.” 

But they did. They did everything they could. And I didn’t die. 

I slept. A lot. I didn’t really eat. I don’t remember much. I know that I’m still on the drugs they put me on during that hospital stay to this day. I know that they only agreed to release me when they did if I promised to stay on bedrest. I know that they told me I couldn’t stay at school.

So I went home.

And that was a year ago. Exactly one year ago. And here I am–thriving

I know that sometimes it may not seem like that with all of the doctor’s visits and the occasional hospital stay. It’s definitely a little unsettling that I’m back in one of these beds on the one year anniversary of that terrifying event in my life. It’s easy to lose sight of how good things are sometimes because of the chaos that is my body.

But things are good. My Cortisol levels are not zero. I am weaning off of the steroids month by month. I have friends again. I go to Roverchase every week. I wash my own hair. I eat. I’m in Physical Therapy. I help take care of Cabbage. I’m back in school. I am one year out from what I knew was the end. And I’m strong. I’m so strong–diagnosis be damned.

Head Above Water

So one year ago last night, I got to see Avril Lavigne live at her Head Above Water tour. I’ve been a die hard fan since I was a CHILD–like 5th grade, y’all. I used to have entire set lists memorized from her shows in 2002, so I was twelve and rocking out to music that was popular when I was two.

Before I got sick. Before she got sick.

I remember the day Head Above Water dropped–her first single in years. I sat in school with my headphones in and sobbed. I couldn’t stop myself from feeling every word. I couldn’t pretend that the song she was singing wasn’t my song too. I felt like I was seen. I felt like I was heard. And it was by Avril. My ride or die since I had a music taste that was all my own.

When Makayla Jo and I saw that she was going to be performing in our area, my chest tightened at even the possibility. And then we made it happen. We went. I saw her. I sang with her. I screamed. I danced.

And it was so so good.

Avril’s Head Above Water tour was designed to be easy on her ill body. The set list was short. It was perfect for her energy level and accommodating to mine. I was able to do all of those things with the people around me despite the fact that I was in the hospital fighting for my life less than two weeks later.

And that’s what you don’t see here. I don’t have pictures of the recovery process that came after this night that made a dream of mine come true. You don’t see that Makayla basically carried me back to the car. Or that when we got back to my dorm room she had to help me into bed and wrap heat and ice around my body and feed me a fist full of pills. You don’t see that I couldn’t get out of bed the next day.

But, guys, I didn’t care. It was so worth it. And some things are. Avril Lavigne singing my long time anthems and about how we’re too young to fall asleep. That. That was worth it.

Because she’s right. My life is what I’m fighting for. And experiences like that. No matter how hard it was. That’s what actually living is.

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.