Emma Lupie

Part-time vegan, full-time Liz Lemon impersonator. Lover of comic books, hater of black olives. I doodle, dabble, and trip my way through life. I'm afraid of the ocean, but not sharks. I'm a walking paradox who's story is a series of ridiculous decisions...

[mlerel]

Grenade

It’s an art form really, pushing people away. 

When you’re reached a level of such cognitive dissonance that you replace other’s sympathy with your own apathy. To borrow a notion from John Green, I am a grenade. A ticking time-bomb, that at any moment will explode and destroy all those closest to me. The shock waves of my own destruction will grip the people who dared care for me, and leave scars that I won’t even be around to treat. I try to be upfront with people, “Hello, my name is Emily, I have an aggressive form of Lupus that’s destroying me from the inside out, if we become friends, you’ll see a lot of fucked up shit, and eventually, you’ll probably see me die. I completely understand, and somewhat encourage, if you do not want to pursue this friendship. If not, strap in, it’s going to be a bumpy ride.” But, I am also extremely selfish, I want to have friends, I want a family and kids, I want to go out on a Friday night, throw caution to the wind a be a damn 24 year old. But I’m stuck between two conflicting worlds, The realm healthy, full of Saturday nights out, starting families, and working a 9-5 doesn’t allow for hydroxychloroquine dosages, severe fatigue, and a big ol' question mark when it comes to life expectancy. However, the land of the ill, has very little patience for someone with an invisible illness, and doesn’t necessarily want to keep the company of someone who can have a few martini’s on a Friday night (not without surrendering the rest of the weekend to “spoon recovery” mind you) 

Now in the realm of the healthy, people typically fall into one of two groups. First, of all, no one will ever say the words “I don’t want to be your friend because you are sick”, although I wish they would, I have no time or patience for pleasantries. So they are left with two options: pretending that I’m a totally normal person, with absolutely no limitations, and eventually leaving, because their optimistic fantasy version of who I am does not, in fact, exist. Or, they vow to stick around, and stand beside me, unknowingly signing up to be a casualty of the impending grenade. If they fall into the latter, two subgroups emerge, people who mean well, and people that do well. People want to fix what’s broken, there’s something built into our DNA that drives us to right all this is wrong. People also like to see immediate results, and get easily frustrated when they cannot right a wrong.  Lupus is wrong, I am broken, but that’s not going to be fixed anytime soon. And eventually, it gets so frustrating, to all parties involved, that no matter how much medication I take, how many times I’ve had to take a day to recoup, how hard you pray, or how hard I try, in all likelihood, this is going to be how I die. And that can’t be fixed. But you know what makes it okay? The people that fall in the beautiful minority, the people who acknowledge that grenade, and decide that the shrapnel is worth it. The people who do well - the husband that understands when I just can’t get up, the friends, who don’t run at the sight of my pill case, the co-workers, who subtly and kindly show me that they care - they do so much more than well - they do good, in my world. The people who stick around, when I tried so hard to push them away, the people who jump on the grenade, so I don’t explode alone. The people who don’t deserve to be hurt the most, who’s kindness permeates the battleground, will feel the blow of my impending detonation. And all I can do, is smile, and thank them. Because of these people, I am inspired to live my life to the damn fullest. The carpe the hell out of each diem. I’m going to grab my healthy days and run with them, and fight my disease with a vengeance. 

Because, if I’m gonna be a grenade, I’m going to go out with a fucking bang. 

[mlerel]

“But I loved your long hair!”

Here’s the thing about having an invisible disease, other people don’t recognize it, and the majority of the time you’re fighting it alone. Yes, my friends, family and incredibly understanding husband are all fully aware that I have lupus, but because they love and respect me they see more than a frail body when they look at me. While 95% of the time that’s a good thing, a calculated and coerced thing, it’s hard to not feel alone when you’re fighting all the damn time.  I don’t ever get to forget that merely existing is a triumph for me. This makes it all the more difficult when your disease starts to become a little less invisible. A few weeks ago, I had to do something that up until this point, I have refused to do, a few weeks ago I had to admit my own defeat. 

It’s been months in the making. Sitting on the couch with my husband, an episode of True Detective playing on the screen before us. I absent-mindedly run my fingers through my long crimson hair and a generous lock follows my fingers through the rest of my mane and falls to the couch beside me. Quickly, I brush the pile off the couch and readjust.  Stepping out of the shower and grasping a clean white towel kept on the rack over the door, eyes still closed quickly towel-drying my wet locks, and opening my eyes to find that the towel is covered in a fresh layer of red tendrils.  My hair was falling out, a physical manifestation of my body failing me. Tears in my eyes, I talked to my husband. 

“I just need to chop it all off, I can’t take this anymore” a fresh clump of hair clutched in the palm of my hand.  “Honey, you can hardly tell, maybe your new doctor can stop it.” he pulls the strands of defeat from my hand and throws them in the silver bin by the kitchen counter.  “I’m past the point of fixing it, I need to do this, while it’s still my choice.” I look across the room at a wedding photo placed on the living room bookshelf, “at least my hair was long for our wedding.” Realizing that this was about more that a haircut, he pulls me into his arms “Okay, call the salon, you will look beautiful with short hair.”

I cut seven inches off three days later, transforming my long mane to a short frock, and me from a victim to a warrior. Staring lupus down, proclaiming “If you can lose it, I can cut it”. What I was sure was going to be a defeat, became a victory. I am a goddamn warrior, I will adapt, I will rise to any occasion and I am so much more than a damn haircut. 

But here’s the thing about having an invisible disease, other people don’t recognize it. While I’m rocking my now short tresses as a battlecry, to the rest of the world I got a post-wedding pre-baby pixie chop. Comments like “I loved your long hair!” are frequent, and it takes everything in my being to not scream back “So did I, but lupus had other plans”. I’ve had one “post pixie meltdown”. I was getting ready for a night out with my husband. 

“I need flats, my joints are way too sore for heels tonight” I yell to my husband in the next room while frantically trying to cover up a butterfly rash with concealer.  “I gotca!” he produced a pair a red flats, only to find me crying in the bathroom vanity.  “It took everything...” I manage through broken breaths He stands there, unsure of how to comfort me.  “I don’t even feel like a woman anymore.” I admit while freshly applied mascara runs down my pink cheeks.  “Not a woman?” he gently asks.  “I don’t know if I can have kids, I had to cut all my hair off, and now I can’t even wear a pair of fucking heels.”

And you know what? I’ve decided it’s okay. It’s okay to feel that way sometimes, that I can acknowledge the lows as long as I don’t dwell. Lupus sucks, but I am so much stronger and now I just have less hair weighing me down. 

[mlerel]

Haiku Part 2

No pity welcome I am not a poor victim  I’m a warrior 

[mlerel]

Haiku

Sometimes life is hard  But keep your head held high dear In life, pain brings strength 

[mlerel]

Riptide

“So what it’s like?”

Having a chronic illness is instantaneously coupled with those four words. Everyone from your parents, co-workers, friends, doctors, partners and random people who see you walking with a cane at one point will ask you “So, what’s it like?”  At first it’s seen as a kindness. They care, they want to know how I’m feeling. The first few times (most likely between your partner or family) it’s a bulleted list.

Fatigue

Pain

Medicine

Mind Fog

Nauseousness, etc.

The next few times (most likely friends or coworkers) it’s a reassurance to others that you are okay even though you may not feel that way, and trying to explain the inexplicable experience that has now become your life while using terms that you know full well don’t come close to expressing how you truly feel. “Yeah, I’m tired and my joints are really achy.” “...um, sure - yeah, it’s totally like having the flu” “Some days I can eat, some days I can’t” “I could become a successful drug lord with my fully stocked medicine cabinet” “I have my good days and my bad days” Here’s the thing about having good days and bad days. The term “good” is used extremely loosely. My good days are still not 100%, my 100% is probably a healthy person’s 75%. But it’s all good…I’m totally fine.

I’ve come to equate lupus with a riptide. It’s always there, pulling and pushing you in unknown directions. You can see other people on the shore, splashing and playing in calmer waters, just out of reach. How are they in the same ocean and I’m over here fighting for my life? The current is stronger some days, you stretch out your toes trying the grasp the sandy bottom, but it’s always just a little too far. Occasionally you can paddle over to a sandbar for a moment of relief, but once you get your footing the riptide, either begins pulling you away form your beloved haven or washes it out completely from beneath you – demolishing your sanctuary in a single wave. You get used to treading water, and sometimes you can almost forget the riptide holds your fragile fate in its tempered waves. You get so good at treading the water that sometimes it’s only other people that see you being slowly pulled away. And when you glance back to shore, looking for familiar territory you suddenly feel so lost. How did I let this pull me so far from where I started off? Have I really drifted so far? Sometimes a ship passing in the distance causes unforeseen waves, a complication that you’re sure you can’t handle. But sometimes there’s a buoy, offering something to grasp onto.  And sometimes, there’s a lifeboat – offering asylum. But you can never be completely pulled out, you can never quite reach shore, you can grasp onto a buoy or lifesaver – but you’ll have to continue to fight the current with your free hand. There is no cure for a riptide, you can only learn to swim. 

[mlerel]

When life gives you lupus

I’m standing at the copier at work. Actually, standing may be a grandiose term for wavering in my toms grasping the side of the buzzing machine for stability. I’ve been off lately, not quite my adventurous self. Fatigue has stolen my wanderlust and aches, my activity. A cane lingers in my right hand, my shaking fingers grasp the handle, now damp from sweat. “Are you okay?” A coworker sees my fragile state. I muster the energy to satisfy my collegue with an answer “Yeah, just a little tired”. I half-smile back at him.  In my pocket my phone jingles the familiar tune to The Office. “General Internal Medicine” flashes across the screen, a scene I’d become all too familiar with. A calming voice greets me on the other end “Miss Ahnert - we have your results in.” A sharp pain in my heart accompanies my response “and..” I’m sure her response was kind, eloquent even, but the only words I heard were “you have lupus”.

Suddenly it was over. My search to find the answer to my aches and pains, the justification of my cane which has now fallen to the floor, a diagnosis - a sentence.

“Thank you.” I managed to reply. The rest of the conversation was a blur. ANA results accompanied by a referral to a rhumetologist fell deaf on my shell-shocked ears. I hobble into my boss’ office and tears fall on my pale cheeks as I collapse into a a worn chair.

“Emily - what happened?” The kind concerned look on my boss’ face is something that I would soon become familiar with. “I - I have lupus”. He stood from his chair and came to my side “I’m so sorry, is there anything I can do?” “I don’t know what I’m going to do, John”. We talked for a bit, as I dabbed my glistening cheeks. “You’re going to be okay, that’s what you’re going to do. Listen to your doctor, take help where you can, and be with your family.”

I left his office and walked outside, pressing my phone to my ear my fiancé’s voice comes through the speaker. “Hey babe! What’s up?” even in this moment his voice comforts me. I hover in that moment, knowing that after the next sentence, our relationship would never be the same. “Um, so my doctor called, and they uh, well, I have lupus.” I wanted to break the news more gracefully, in person ideally, but life does not allow for convenient moments that we feel we deserve, life allows for necessity. I can only imagine what he was going through. Now, I know that Doug is an amazing man, I know that he loves me, and I know that he’s the one that I will spend the rest of my life with, but until this moment I never knew how incredibly compassionate he is. “I love you, and we’re going to get through this, together.” Without hesitation he signed up to be my caretaker, my support, my partner in all of this for the rest of our lives - now that’s love. “I don’t know what they’re going to do to me… medication, treatment, tests… I don’t know what this means” my voice cracks “Doug, I don’t know if we can have kids.” “Emily, calm down” his ability to be blunt and kind borders on supernatural “You don’t know what this means yet, and either way, we’ll get through this together.” The phone shakes in my hand I grip my cane a little tighter and take a deep breath in “I love you, I don’t know what else to say, thank you”

I’ve always believed that life has a series of “before and after” moments. Things the affect you in such a way that you can pinpoint other things in your timeline around them. Sometimes it a wonderful thing, the birth of a child, a marriage, a new career. And sometimes it’s a terrible thing, the death of a loved one, a tragic event, or even a diagnosis. I didn’t know it then, standing in the office, gripping the copier, that this would be one of those moments, but I’d be lying if I told you it’s not. There’s so much that comes with a chronic diagnosis - mentally, emotionally and physically. There’s medication, lifestyle changes, and a portion of your identity that is completely altered. Not to mention getting the news six months before your wedding adds a whole different element.

I have lupus, I am a lupie, a spoonie and chronically fabulous. A person that, by definition, is not okay, but will be damned to have anyone think otherwise, I am strong in my weakness and agile in my fragility. Because when life gives you lupus, you make lemonade.

[mlerel]

I feel like being inspired as of late <3

[mlerel]

This is me, Emily Ariel :)