Nighttime.

I’ve always been afraid of the dark. Still today, at the age of 21, I run up the stairs if I am the last one downstairs who has to turn out the lights. My heart races as I try to escape the darkness that always manages to follow me.

What is it that scares me about the dark? Well, you can’t see a thing. Sure, that’s the obvious answer. But there really could be anything there. Especially in the phase where your eyes aren’t adjusted and it is literally pitch black.

Darkness has so much power. Fear of the unknown.

Sometimes I hear noises as I’m falling asleep or I see a weird shadow, so I reach for the lamp in full panic mode.

Nothing there. I feel so defeated when I turn the light on and there’s nothing there.

There’s also another element of darkness.

You manage to drift off to sleep and enter the world of dreams. You wake up in the middle of the night and it’s so dark that you could be anywhere in the world. You’re in a groggy state, so you try to look around to get your bearings. But sometimes it’s just too dark to decipher anything.

There’s this one moment when you can’t figure it out and you actually forget who you are. Where am I? Who am I? Did that really happen?

Just like turning on the light when you hear a noise, only to find that there’s nothing there, you feel so defeated when you snap out of the daze and realize that it wasn’t all a dream. The moonlight shines through the window just enough to illuminate your alarm clock—a quick snap back to reality. Your problems didn’t erase, and you can’t go back in time to a different body.

Darkness erases a lot. It erases our vision and our comprehension and our grasp of reality for just a second. But eventually you wake up and have to face the light where there’s no question about what’s in front of you.

Jolly.

A jolly old man jogged past me on Friday morning. “Jolly old man” seems like such an overused expression, but there is just no better way to describe him. His elbows were out wide and he waddled from side-to-side as his stark white hair curled over his stark white sweat headband. And, yes, his stark white T-shirt was in perfect coordination with the jolly-jogger look.

He waddled my way and stopped cold in his tracks. “Smile, young lady, it’s Friday!” He grinned from ear-to-ear. He certainly wasn’t out jogging in preparation for a marathon, as he was more concerned with interacting with his surroundings than pushing for a record time.

I think the outfit was just a nice attempt to be in the jogging spirit.

I chuckled back and put my head down to stare at the sidewalk. I really didn’t even know I wasn’t smiling. Fridays are pretty exciting. But Fridays are also exhausting.

Fridays are when my body screams that it can’t take anymore—no more early mornings, days of stress, and late nights. No more pretending to be normal.

Sleep.

Seasons.

The weatherman on the radio this morning let me know that fall is fast approaching. Goodbye long summer nights, hello crisp fall air.

Just like everyone else who needs a change of pace after a few months of the same season, it’s nice to hear that we can look forward to sweaters, bonfires, and changing leaves. Sure, we’ll all miss the warm summer weather, but there’s something about the fall air that wakes up your whole body and really makes you feel good.

For me though, seasons mean a lot more than just a change in wardrobe. Each season brings on a new challenge with Sjögren’s. That crisp, fresh fall air that I love to breathe in also sweeps across my fingertips and toes, leaving no trace of blood behind.

Part of Sjögren’s for me is dealing with Raynaud’s Phenomenon, which is inadequate blood flow that is triggered by cold weather. The fall is particularly tricky because it’s sometimes warm enough that my fingers and toes are fine, but other times they are washed-out white for sometimes an hour before I start to notice the red blood making its way back. I just never know what the fall weather will bring for me, but I do know that it is much easier than winter.

Let’s get ready for fall—a season when my disorder of “invisible” pain becomes a little more transparent, as people start to ask about my ghostly hands.

Tears.

One new text message and life is suddenly different. The alert for this new message didn’t sound any different than an alert for a normal message that might read, “Hey, what’s up?” or “What are you wearing tomorrow?”

But this message was different, and it certainly wasn’t about my plans or what the weather was like.

News of a loved one’s death hits you like a ton of bricks. It’s not just a saying. Your mouth literally falls open and your hand has to cover it to stop yourself from drooling, or maybe just to remind yourself to force the air in. It’s a tingly rush of adrenaline, but not the kind that spreads excitement through your veins.

It’s the kind of adrenaline where your mind and your body can’t quite communicate to figure out how to react.

Shock. Your heart really does beat faster. Your body really does shake. And it really does hurt.

Today is 9/11, a day of mourning for our country. A day of remembrance of a tragedy that happened 10 years ago today.

It’s also a day when my boyfriend and I heard that a college friend tragically passed away.

Events like this make Sjӧgren’s seem so insignificant. It is a blessing to be alive, regardless of the obstacles that I face, and I hope that I never take that for granted.

Despite my dry eyes, I am still able to produce enough tears to cry.

Rest in peace, Kenny.

Pucker Up.

For those Sjögren’s patients who suffer from inflammation of the parotid glands, like myself, lemons and sour candy are your tickets to salivation.

Try pushing down on your glands that run on the side of your face starting by the bottom of your ears. Normal people don’t have to do this to salivate, but my body needs a little help to trigger these glands.

I remember the first time the doctors gave me a prescription ticket written out for unlimited “Sour Patch Kids and Lemons.” It seems like a glorious prescription—a child’s dream. I haven’t always been the right girl for the job because I can’t say I love sour candy, but my brother always loved helping me with the doctor’s orders.

Stoplights.

You know that split second when the light is green, but then it suddenly turns yellow and you have to make a decision: floor it or slam on the breaks?

That’s the decision that I live with every day with Sjögren’s. Live life to the fullest or wallow in my pity. Physical exhaustion from chronic illness sometimes causes a road block, but I like to think that I’m charging full speed ahead.

There’s also the whole new craze of distracted driving. You check your phone and change the radio station while the windows are down and your hair’s blowing through the sunroof. That sunlight beaming in just feels so good, and this is exactly the song that you’ve been waiting to hear.

You are so distracted that you don’t even notice that you had a choice when that light turned yellow. In your mind, that light was always green and you maintain that speed without even a flinch of hesitation.

Welcome to the world of denial. Or maybe it’s just a world of distraction. Sometimes it’s easier to just forget that I have Sjögren’s and, psychologically, it might even be the better option to forget.

But, don’t worry, I’m reminded every day…three times a day…when I pop my pills. Like a buzzing gnat in your ear that you keep swatting away. Or that bug bite that no matter how hard you try and try to forget about, you just can’t stop itching it.

I try to swat away the reminders, but it’s hard to forget about a disease that impacts nearly every part of your body. I would love to be a distracted driver, just once. So relaxed and encompassed that I don’t even realize that I have a decision to make and I just glide through the stoplight with ease.

Your body never fails to remind you. Pain and discomfort are hard to forget.

Earthquake.

On August 23, 2011, the East Coast experienced its first earthquake in over 100 years. I was at my desk when my corkboard filled with pictures began to shake. A co-worker stood in my doorway with a panicked look and my heart began racing as I realized that the shaking wasn’t stopping.

People shrieked and some ran. It was enough time that we were all in the hallway, first peeking out and then flooding out, wondering what was going on.

An earthquake. We evacuated the building and everyone came with purses and cell phones in hand. Who do you call at a time like this? Should we just laugh it off or should we actually worry enough to reach out to our loved ones?

Sheer panic spread across washed out faces. A buzz spread through the crowd of what to do next—where to go, whom to call. Fear of the unknown.

In the end, a few dishes were shattered. Some things fell off of shelves and out of closets. Some roofs were damaged. I noticed a bit of debris falling from our old building.

But we’re all okay. We all tweeted about it. We all googled it. We all kept the conversation flowing with quake jokes. But we’re all okay.

We learned that we value security. We value our loved ones. We value safety.

People were in such a panic because they lost control. But for those of us with chronic illnesses, we’ve already experienced the feeling of losing control—the feeling of something much bigger than yourself taking over your body.

Venus Williams announced to the world that she has Sjögrens. I was diagnosed with Sjögren’s when I was 16 years old and I am ready to share my story of having to throw my hands up, surrendering control.