Monthly Archives: November 2011

Mine.

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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.

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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.