The Ultimate Sarcoidosis Superpower!

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I have figured out what superpower I would want if I could have one and it’s not to be able to fly, or to be invisible or, to read minds. My superpower would not be to see through walls or to have crazy strength. I would not need a special car named after me or a cape and boots or a truth lasso. The superpower I want is unique and anyone who suffers with an otherwise invisible chronic, yet life altering illness, would probably agree. I want the power to force people who doubt how I feel or question me with skepticism to live inside my skin. A little time inside this body would prove to the naysayers that life with a chronic condition like sarcoidosis is no joke. Those who doubt us would then be obligated to admit that we are actually the stronger ones, that what we experience is real and that we are a people full of grace.

There is not one thing that is easy about living in a body that won’t cooperate. Even when many of us attempt to make it look like a walk in the park, it is more like a trudge though thigh high muck without the benefit of protective boots. Our desire for some visual sense of normalcy is for our own benefit though. If we act and look as if we are okay, maybe we can believe it too, even if for a little while. Why should we be relegated to PJs, sweatpants, and no make up 24/7. We have every right to look our best and to try to live as normally as we can but, just because we are doing this doesn’t mean we don’t suffer. We do. We suffer in ways most people cannot imagine and we often suffer quietly and alone. Ours is a misery we do not share and we do not dwell upon.

If we could put just one of the “Doubting Thomases” in our body for 24 hours, I suspect they would be shocked at how we work just to take a simple breath of precious life giving air. Every breath is a chore unto itself. Every inhale and every exhale is exhaustion for us. The other thing that would surprise a non-believer is the amount of constant pain we are in. Somedays it is low level pain, sure, but it is always there and like our shadow, it never leaves us. Some days it stops us cold. These are the days we hide from you. These are the days we grieve privately for the person we used to be, before life became about effort and lost its ease.

Doubters would be truly horrified to learn how long it takes us to heal. A mild cold can turn into something serious or even life threatening in a moment’s time. A cut or a bruise can take weeks if not months to go away. There is no telling how our bodies will react when sickness lurks or injuries befall us. It is astounding how vulnerable we are because of our sarcoidosis. It is also frightening because while we know living in a bubble is not realistic, living like nothing is wrong with our immune system isn’t either and finding a balance can be very difficult, sometimes lonely and occasionally overwhelming to figure out. While we might never say it out loud, everything we do, or don’t do, revolves around our best guess in how we think our bodies will react in any given situation. We are held hostage to our disease even when we pretend we are free.

Forced empathy. That’s the superpower I want. I would use it sparingly. Only on those who are knowingly critical or obviously skeptical. I wouldn’t make them suffer long, just long enough to learn the valuable lesson that you shouldn’t judge what you don’t understand or what you yourself have never experienced.

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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.