Something I Don’t Know

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I live with an invisible illness called sarcoidosis. Why is it invisible? Well, it is invisible because you cannot see that I am sick. I don’t look like a cancer patient who is losing my hair. I don’t walk with crutches or a cane. I don’t limp or look pale or weak, even though I am. I don’t even have a handicap sticker for my car. Yet, my muscles throb and my nerves sizzle and my lungs burn as I quietly gulp for air, never quite getting enough. If you saw me on the tennis court, you would be amazed to learn that every step into the ball, every serve and volley, is painful. When you see me out at a gathering or casually strolling at the mall, I am the picture of health, my hair and make up just so, my outfit coordinated and pressed. You cannot see that I am sick or know my struggle. It hides deep within my core and lurks and stalks me like a thief in the shadows but make no mistake, I am sick.

What I know from my own experience with this unassuming monster, living inside me and feeding off my pain, is that no one really knows what I know. I’ve met several other people along the way who have the same disease and because of my blog and my outspoken nature, my ability to articulate what others feel, many with this disease feel compelled to tell me their stories too. It has been an honor to be their sounding board, their safe place, their refuge. As I listen to every individual story of life with this disease told to me by others who suffer in similar ways, I have realized that every person brave enough to share, they too know something no one else knows, something I don’t even know. Every person I meet with sarcoidosis, knows their own truth. They know pain and suffering in their own way but they also know something unique, something distinctive about not just how to survive but how to thrive in the face of the beast that lives inside them.

I’ve come to learn something valuable from listening to these stories. I’ve come to learn that I don’t know what someone else knows, someone walking the same path as I am. We all have our own journey in this life and no matter what befalls us, no matter our hardships or joys, we all know something that no other person can know. We each have our own very private perspective and it is this view that shapes who we become and colors every decision we make. We all have something important to contribute. We can all learn from the views of others. Our life lessons are personal and shape our thinking and outlook. Each of us really does know something no one else can understand, not even when we walk that so called mile in someone else’s shoes. We can empathize, try to know what it feels like but like a finger print, or a snowflake or even our DNA, our experiences in this life, how we view the world and what we come to understand about life remains unique to our own very personal journey.

I love hearing other people’s stories because what they know teaches me something new about myself every time I get the privilege to be someone’s ear. This has humbled me. It makes me realize how small I am, how I am only one tiny piece of a huge inexplicable puzzle called life. Knowing that everyone knows something that I don’t, makes me realize that there is no value judging others and that whenever I do, I miss an opportunity to grow and glean a new nugget of knowledge. I miss an opportunity to view the world through the eyes of someone else and only when I view the world in this way do I truly understand how vast it really is and how little I actually comprehend.

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One thought on “Something I Don’t Know

  1. I was diagnosed with SACRODOSIS last year 2015, when the doctor told me I cried like a baby, I wanted my Mommy, all I could think about was Bernie Mac and that he died from Sacrodosis, my whole life flash before my eyes, when I talked to my Mommy she told me that he didn’t die from Sacrodosis he did from the flu but since he had Sacrodosis it made it harder to treat, I don’t know if she told me that to make me feel better but it worked but in the coming months I got worse, the doctors in Maryland didn’t treat me, I had a biopsy done, MIR, CAT SCAN, all showing Sacrodosis but they refuse to treat me and I had Insurance! In August 2015 my Mommy brought me down here to North Carolina so she could take care OF me, I was in bad shape, I started having seizure, I couldn’t walk, bladder and blowl disorders, nerve damage in my feet and legs, really bad shape, the doctors not only diagnose me Sacrodosis but Nuero Sacrodosis affecting my upper and lower spine and my brain, and from the steroids I developed type 2 diabetes, appled for Socail Security benefits but I was denied, I started a fundraiser campaign on FB called “HELP ME OUT ” to raise money for medication, supplies, and co pays, wish I could say I’m doing better but I’m not, all I can do is thank GOD for my life and take it day by day! 😞

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