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The Dragon: My Autoimmune Malfunction

On Labor Day 2010, I woke up to a health-induced rearrangement of my life—physical, emotional, and spiritual. After ten months of excruciating pain, I was diagnosed with Still’s Disease, a rare autoimmune disease. Yeah, it’s the same one from the movie The Big Sick. Those of us plagued with Still’s call it The Dragon. I don’t like the word “disease” so I refer to it as my autoimmune malfunction.

Before my diagnosis, my sister suggested it could possibly be a parasite I had picked up from my travels. So, my nieces and I named my ailment Petey the Parasite. Until I started receiving treatment and a bit even after, Petey tormented me day and night.

On the outside, I looked normal. For the most part. But autoimmune malfunctions are like that. It’s kinda like your own personal hell. One person told me that since I didn’t take pain medication, I must not be in too much pain. There were some people who appeared disappointed that I didn’t look the way I felt. The continuous “well, you look fine” or “I thought you were sick” was disheartening.

Even though the pain wasn’t obvious to others, there were days that everything hurt. When I say “hurt” I mean every movement created a soul-crushing agony throughout my entire body. I was unable to walk most days, I had a daily fever spike of 104, a chronic sore throat that made swallowing difficult, severe anemia, and serious weight loss. Washing my hair was a struggle. Drying it nearly impossible. I had trouble getting dressed and undressed. I lived alone, so hardly anyone witnessed this daily battle. It was just Petey and me trying to find our way through the pain.

I was baffled by Petey’s presence. How did this rare autoimmune malfunction find me? Why had my body betrayed me this way? I had always been so healthy and lived a very healthy lifestyle. I worked out, I ran, I ate well. Apparently, none of that mattered. However, I do believe that being relatively healthy helped me navigate the mine field my body had become. I was determined to send Petey on his way and regain my health. I had dreams and goals to pursue. I had books to write and stories to tell, and there was no room for Petey in those things.

After five years of living with Petey and weekly injections of Methotrexate, I noticed a change. It was subtle at first. My body was demanding I pay attention to what it was trying to tell me. A dread would wash over me when it was time for my weekly dose of Methotrexate. This dread became so overwhelming, it made me physically sick. So . . . I stopped taking the meds. I knew this was a gamble, but I was willing to roll the dice. I needed to know how bad the pain was without the meds. To my delight and my doctor’s amazement, there was no pain. No swelling. No Petey. I had gone into remission.

Three years later, I’m still in remission. I know I’m one of the fortunate few who get this gift, and I’m eternally grateful that Petey has moved on. There’s a possibility he could return, and I’ll jump off that bridge when or if I get to it. For now, I’m one grateful woman.

Even though I don’t miss Petey, I am grateful for the gifts his presence brought into my life. These jewels were found in the stillness . . . in the quiet, in the midst of the pain, or through the pain, or possibly in spite of it. Being still and present is the only way to hear your breath and the breath of God. The greatest gift I received from Petey was learning how to be present. The power of the present moment, the beauty of now, and stillness have made my life so much more colorful.

In several external, minor ways, my life hit the pause button for a while. But if you go a little deeper, just a bit beneath the surface, you can see I’ve gained much. Mostly perspective. Perspective on what is important and what holds value and what can cheapen a life. When you have only so much energy, power, and capacity, you learn quickly what must go and that which you must grasp and hold tight.

Wisdom comes from life’s circumstances we try with all our might to avoid. It comes from walking in dark places, painful places, quiet places.

God will use every experience to make us better, to make us what he designed us to be. “All things work together for good…” or bad, depending on our choices and how we react to life’s circumstances. In yoga balancing poses, where your eyes go, your body will follow. So too in life—where your eyes and mind go, your life will surely follow.

Petey taught me to be mindful and present each day, each moment, each breath. Not to take one second for granted. To love extravagantly. To stay focused on the higher road and avoid the sideshow distractions.

A little rearrangement will do a girl good and provide a life that is richer, deeper, more.

1 Comment

DS Simerly
DS Simerly
May 03, 2018

Impressive wisdom from such a young soul and surely there are multiple sub-chapters forming that are way too personal to share, yet. You are a great writer, perhaps in part because you are a great observer, first by seeing where you are and then by how you got there. Whether it’s the multiple routes in and out of your West Virginia taproot or vast range of professional accolades, your quests are revealing and you want answers. I like how you give your enemy an identity and let it have a place in your life, but only when it’s absent. More wisdom from a painful almost relationship. You acknowledge God in your writing and if you would consider sharing another survivor’s…

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