Fiction.

At a recent writing workshop, the author suggested that if you don’t want to write about yourself then you simply write about yourself and call it fiction. Apparently it’s a common practice of many authors.

There once was a girl who discovered at a young age that she was chronically ill. Of course, the idea of chronic illness didn’t make any sense at the age of 16, but she knew she didn’t feel well. She never knew where to walk because sickness could be lurking around any corner.

She didn’t love to travel because she had so much to do to prepare. Medications, steroids, fish oil, vitamins, contact solutions and eye drops for every eye condition, prescription toothpaste and fluoride trays, gloves, socks, lotion, chap stick, water and more water. Her purse was always jam-packed with random things that people always asked, “Why do you have that?” She liked to remind them that you never know what you may need. Trivial things to some but crucial to others.

Going to the grocery store, in and out of the freezers, involved lots of staring when her blood was washed from her fingers. She tried to write while sitting outside, but the wind swept across her fingers and soon her bloodless hands couldn’t grip her pen.

She thought about staying out late since, well, that’s what people her age did. But she needed her rest. And the life of a retiree sounded more and more desirable, especially when she was old enough to understand the meaning of “chronic.”

It was finally time for her to leave her pediatrician, who knew her on a first name, personal cell phone basis. She needed to call to get her 5-inch thick records transferred to a new doctor who would never make it through the years of notes. She avoided the call and feared the idea of ending a relationship of nearly 22 years.

Her mom suggested that she write a letter to thank her pediatrician. She couldn’t make herself do it. She didn’t even know where to start.

Silence.

The passing of time sometimes means that life is easier if I just forget about it for a while. Sometimes, I just don’t want to think about Sjögren’s. After all, the life of putting on a smile can be quite fulfilling for a while.

Doctors’ appointments come about once every six months for check-ups, so that gives me some time to fade into the life of normalcy for a bit. I still take my medicine three times a day, I still field questions about my bloodless fingers, I still scrub my contacts every few hours, I still regulate my water intake, I still watch my dry skin crack with each degree drop in temperature, I still can’t breathe in the morning because of sinus problems, I still ache, and I still stress about getting stressed.

But these are all normal parts of my routine.

Rub your face. Worry about what you’ll feel like tomorrow. Close your eyes. Try everything you can to get comfortable. Feel the aches and pains that you’ve been ignoring all day.

So, silence sometimes just means that I’m learning to be thankful in this very moment. I don’t have to be thankful for Sjögren’s, although it certainly spices up my life. But I can be thankful in it. I’m thankful to be able to connect with new people and to share my story. I’m thankful that I try not to take any moment for granted because I never know what’s coming next.

When you ask me if I’m scared…of course I’m scared.

But, next time, consider asking me if I’m excited. There’s a lot more of my story to be told. There’s a lot more of my story to unfold. There are a lot of people out there who may benefit from it. There’s a lot of hardship in this world, but language allows us all to unite around shared emotions and experiences.

If I’m ever silent for too long, don’t ask me if I’m scared. Ask me if I’m thankful. Ask me if I’m excited.


Kudos to the Sjogren’s Syndrome Foundation for all they are doing for advocacy and awareness. When I am silent, others are tirelessly working to unite a community.


Mine.

We all desire to find our place to belong. Starting as a young child, we try to make friends by sharing our chocolate chip cookies at the lunch table. We try out for soccer teams and give Girls Scouts a chance just so that we can be part of something. Some of us flourish in the making friends department, and these are the ones who are high fiving in the hallways and getting in trouble for talking too much in class. Others are instead picked last for the softball team in gym class and bounced around from club to club, never quite finding a niche. The age of the cyber world has allowed many to browse onto Facebook to peer into the lives of others who we think are living the dream and have found a true sense of belonging.

Who am I? A question we all want answered. Our desire to belong never fades, as we strive to determine what it even means to be. We bounce between jobs; we seek out our passions and we follow our heart to fulfill our deepest desires. We meet new people, and sometimes we even have to leave behind others who are taking away from the journey of self-discovery. Time becomes limited and precious as we age, so we keep those who mean the most closest to our hearts. The question of Who am I? seems to be a puzzle with pieces, or various aspects of life, that we are constantly trying to put together.

And if only the puzzle was simple enough to just piece together.

Instead, life throws us curve balls and we must decide every day how we are going to react to them. Some of them are expected troubles that we must overcome with time. But others come at us from our blindside. These are the ones that knock us over and leave us on the ground for quite some time as we question whom we can really trust in this world. These are the ones that are so hard to grasp and get our heads around. We always want to know Why me? Why this? Why now?

If we let these curve balls get the best of us, we will certainly have trouble finishing the puzzle. All we can really do is keep sharing our chocolate chip cookies to make new friends, keep trying out for teams, keep connecting with family, and just keep striving to uncover new passions. We have to get up from the curve balls and realize that we have two options…

Hide from our misfortune in shame and let it strip us of all of life’s joys.

Or be proud to call it Mine.

Sjögren’s is something I can always count on as a piece to my puzzle. It belongs to me, whether I like it or not. There are days when I want to give it back, but there are also days when I am proud to know what I have made it through. We all have something, but Sjögren’s is Mine.

Fat Face.

Here is an excerpt from my memoir:

“What is that? What is wrong with you?” They all just stared. The first time it happened, we were at the lake and I remember lying on the sofa with my right cheek on the pillow. My whole family circled around me, all faces hovering above with eyes wide opened and amazed.

They poked. They prodded. They whispered. I just cried.

I think they always thought that I couldn’t hear them, but I knew they all didn’t know what to do with me. Where do we take her? What is happening? We were practically in the middle of nowhere. Lake Gaston, North Carolina. The closest grocery store at that time was in Roanoke Rapids, nearly 30 minutes away. It was the closest thing to civilization, so we always called it “going to town.” They had a Wal-Mart and a buffet restaurant called Ryan’s with real southern hospitality, so “town” seemed rather fitting.

My parents took me into town to the closest hospital. “Name please,” the woman at the front desk didn’t even look up from her computer screen.

I couldn’t even open my mouth because the left side of my face was so swollen that it looked like I had a tennis ball shoved in my face. I tried to make noise come out of my mouth, but every time I did I could literally feel the mass growing. My face would expand and throb with shooting pain. My skin was trying to stretch around this new mass that was tender to even a soft touch and felt like it was growing by the second.

“Name pl…” she grew irritated, but quickly stopped mid-sentence when she looked up to see the growth on one side of my face and tears just rolling down. “Um…you can just go right on back. We’ll worry about the rest later.” Her thick southern accent made me feel like they would take great care of me, but turns out they aren’t very sophisticated medically in those parts of town. “How y’all doin’?” worked well for greeting people, but it didn’t speak volumes about their level of care.

The doctors asked me questions about my history, what I had eaten, how I was feeling. All the common questions. I didn’t have answers. I woke up and my face was huge, and the pain was unbearable. They didn’t have answers either. They thought it might be the mumps, but they just had to give me a label and that seemed fair enough. They really had never seen anything like me before.

They gave me a series of antibiotic shots in my butt with hopes of clearing up the “infection.” It seemed reasonable: Your face swells up huge and you have a fever of 103°, something must be infected. The series of shots meant that I had to return multiple days for multiple shots. My parents thought about taking me home, but I begged to just stay at the lake. Sure it’s desolate and was quite a drive to the hospital, but the lake is a peaceful oasis for all of my extended family. All year we count down to our time together at the lake. It’s what gets us all through the cold winters. It’s the only place in the world that doesn’t change year after year, so why would I want to be anywhere else?

So we stayed despite the level of medical expertise. The green couch is really what I remember of those days. Lying on the old, green couch that had been there forever. But it was the perfect couch, so why change a thing about it? Right cheek down on the velvety, plush couch. Left fat face up. Staring straight ahead at the pier and the water and all of my cousins jumping off the diving board. The neighbors brought me magazines, but all I really remember is them staring.

Everyone stared. Even my family would just stare. I thought that they might get used to my new fat face after a few days, but they couldn’t quite disguise their amazed eyes. Not just amazed, but curious and even fearful eyes. I cried because of the incredible pain, but I also cried when people stared. I rarely looked in a mirror, so I only knew it was bad from their reactions. It’s a whole different view from the inside looking out, and people forget that sometimes.

Exactly 12 days later, after multiple shots and tons of antibiotics, I was feeling better. They had fixed me, so what else needed to be done? I was better in time to start tenth grade, so life was fine. As long as I could go to cheerleading practice and look at the cute boy in history class, my life was complete.

The endless years of blood tests began that day at the lake. There were a lot more questions that needed to be answered when the fat face returned every year.

Fog.

If they catch me in the bathroom at work, I might give away a little piece of my Sjögren’s secret.

“Oh, no…” they say. “Did your contact fall out?”

I’m scrubbing away at the white film that builds up on the bottom half of my contacts, so I can’t really see them as they are staring at me through the mirror. I put my head down and focus on scrubbing. I know they are staring, but it’s all such a blur.

“No…I…” I debate how to handle this. I debate how much to reveal. I debate how to say it. “I…I just have a problem.”

I have a problem? Why did I say that? My one opportunity and all I blurt out is I have a problem?

“Hmm…” they say as they pretend to focus on washing their hands. They scurry out as quick as they can. I just keep scrubbing.

Well, one failure, but don’t worry, champ…you’ll get ’em tomorrow.

“Oh, no…” they say. “Having trouble with your contacts?”

The same routine. Every day. But usually a new person catches me in the act.

They mean well. Small bathroom talk to be friendly towards a co-worker.

“No…I…” Here’s my chance. Just say it. Just say something. “I…have an autoimmune disorder.” Well, that will get their attention. They suddenly are grabbing way too many paper towels and just keep grabbing for them as they turn to face me. They just keep wiping their hands dry, again and again. Their hands are definitely dry by now, but they feel like they have to stay. Who has the heart to walk away after that?

“My eyes just get really dry, so sometimes I can’t see that well because I get this white stuff on my contacts. It’s worse when I’m tired or stressed.”

I guess that’s enough to reveal. They don’t really understand Sjögren’s. They can’t really get it. How could they?

They smile. Sometimes they say they’re sorry, or they look sad or even just confused. One simple bathroom small-talk moment suddenly is a lot more than they expected. 

They smile and walk away. I just keep scrubbing. Scrubbing and scrubbing so that life isn’t hiding behind such a fog.

Feel Good.

There’s this picture frame that I hung up on my wall at work. It’s right by my computer screen, so I catch myself staring at it a lot. It’s simply three rectangular frames strung together by ribbon. It’s bright and cheery orange with polka dots and flowers and bright blue ribbon that loops at the top to hang by a thumb tack.

The top frame reads, “Feel good.” The middle, “Live well.” The bottom, “Be happy.” In my mind, I read it from top to bottom:

Step 1: Feel good.

I get really hung up on this one some days. In the frame is a photo of my family on our recent Southern Caribbean cruise. I felt okay on this trip, but I remember needing a vacation from the vacation. I remember getting so dehydrated from the scorching sun. I remember one night literally crashing onto the bed and slipping into a coma.

I wanted to keep up. But I just couldn’t. My body wouldn’t let me.

But what really gets me is that “Feel good.” has to be Step 1. So, if I don’t feel good then can I not go on to Step 2: “Live well.” and Step 3: “Be happy.”?

I personally think the phrase “live well” is pretty awkward. How are you living? Well.

They’re all commands, too. You must feel good. Just do it. Why can’t you just say it and want it and think it, and then it will come true?

And if I can’t get past Step 1, then do I not get to live well—whatever that means—or be happy?

All three frames are filled with images of friends and family. For whatever reason, I really like the frames. Maybe I like the idea of commanding my body to feel good. I like seeing my friends and family there to support me as I figure out what it means to live well.

And I like the idea that if I tell myself to feel good and live well, then I can definitely command myself to follow Step 3: “Be happy.”

I think I just like that the frame is simple and colorful. I bought it because it was aesthetically pleasing, but it suddenly means so much more—probably way more than the designer intended.

Feel good. The first ticket to happiness.