How I'm Content in a World of Daily Pain and Life-Limiting Symptoms

I have this thing.

The doctors call it a disease. My family calls it a devastation. I call it a storm.

My life has never been a calm blue sea; it’s always been a storm.

Here’s the thing about storms — they’re haunting and wild and loud and dark and unpredictable, just like disease.

But I love them.

Maybe this has something to do with a childhood spent in tornado alley. Anytime I saw clouds, I ran straight to the window with the hope that when the skies would part, the air would be fresher, the sky would be bluer and the world would become still, if only for a moment.

Dark skies, wild winds, the unknown… it’s all so frightening and exciting. Most people are terrified of thunder and they despise the rain; I welcome both. To me, it’s a new beginning.

I guess that’s why the diagnosis has never really been hard to accept.

Autoimmune autonomic ganglionopathy (AAG) is a perpetual storm.

The clouds show up with little warning, and the flare ensues as a nightmare to all who view it from the outside. True, I’d die a million deaths for one day outside of the haze, but my secret is, I actually like this hurricane.

It’s hard to explain.

People ask how I can be content in a world of daily pain and life-limiting symptoms. They get overwhelmed when they see me drowning in my situation. But I’m not drowning. I’m exploring the ocean floor with clear goggles. Because like AAG, the ocean floor is uncharted and undiscovered territory.

It’s the easiest thing in the world to be happy under the rays of sunshine.  You’ll get wet, you”ll get muddy, but as they say, life is not about waiting for the storm to pass.

It always seems to me that when it rains, it pours. But it’s taught me how to swim.

The Mighty is asking its readers the following: What’s one secret about your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Find this story helpful? Share it with someone you care about.

Related to Autoimmune Autonomic Ganglionopathy

Hey, Autoimmune Disease, Still Think I'm an Easy Target?

Dear Autoimmune Autonomic Ganglionopathy (AAG), I’d like to know what you were thinking when you chose me. Did you look at my small 15-year-old frame and decide I’d be an easy opponent? Did you think you would breeze through this war and come out the victor? I’m sure you did. Five years later, are you [...]

You Took My Son's Last Breath, Chronic Lung Disease, But You Didn't Win

Dear Chronic Lung Disease, When I first met you, you terrified me. I’d already met your friend, heart disease, the day I met my tiny newborn son. The word “disease” is scary enough, but throw “heart” in front of it, and then “lung”… Well, you two were a terrifying pair. I watched you play your [...]

The Absolute Hardest Part of My Daughter's Complex Medical Journey

To my daughter’s complex medical issues, We don’t know yet if you have a formal name, like “syndrome,” “disease” or “disorder,” or if you’re just a random group of health issues, but I’ll be honest. I wouldn’t really feel the need to call you be your formal name if I knew it because we’re pretty close. [...]

Why I Feel Sorry for My Chronic Disease

Dear Scleroderma, I feel so sorry for you. When you picked my life to destroy you probably thought, “This is an easy spot, I’ll bring this girl’s life to shambles. She will be overwrought with grief. She will give up quickly, losing all of her beliefs.” Slowly but surely you took everything from me. I become a [...]