On The Lupie Side Of The Street

This afternoon I was hanging out with a really close friend. While I haven't known her for a very long period of time, only four months or so, I feel like I've known her forever. We were sitting outside in the shade in front of a Starbucks enjoying our iced green teas. At some point during our conversation the topic of my health came up. She made two comments that really stuck with me throughout the evening.

"I didn't realize how sick you really are."

And.

"I don't know how you even manage to leave the house?"

Most people judge my sickness based on my outward appearance. Some days I do look physically ill, some people go as far to say that my skin takes on a greenish hue. Occasionally if I'm not wearing makeup, I'll notice how dark my skin gets around my eyes. My face will be pale and my lips will have no color. But most days I don't physically look sick, I put on makeup, I'll put a smile on my face, and no one would know unless I told them. Appearances can be deceiving, I may look like your typical 23 year old on the outside but on the inside I'm not. My body is older than my actual age. My muscles, joints, organs, and soft tissues are more damaged than someone who is in their 60's. People forget how destructive auto-immune disorders can be. Even with medication it doesn't control all of the horrible effects, it doesn't halt the progression of the disease. It's like putting a band-aid on a penetration wound, it doesn't do the job.

Once in a while I forget how sick I am because sometimes I feel as OK as I'm going to get. Sometimes I don't feel sick to my stomach, my muscles don't burn, my joints don't ache, my organs don't hurt, my head doesn't pound, my brain isn't in a fog, I'm not exhausted, and I feel as if I could conquer the world. Once in a while I can have a full day and forget that my body is as messed up as it is. I love those days, I cherish those days, those days give me a reason to keep going, not to up and quit because I am so tired of trying when life barely gives me a break. But I know that I can never have a break from life, if I break from life, that's it, it's over. I wouldn't have the strength to come back, I would fade away and be lost forever. So those good days make me want to push on through all of the pain and heartache my body causes me. They are little pieces of hope that I carefully cradle in my hand as if it were a butterfly, being careful not to hurt the wings. Eventually that hope has to fly away but I never forget the feeling it leaves in my heart.

When it comes to leaving the house, some days I don't. Some days it's all I can do to get out of bed and go downstairs to get a bottle of water. Honestly, some days I'm barely alive and I'm well aware of it, I'm hanging on by that little piece of hope. But not every day is absolutely horrific, most days are bad but I choose not to show it. I have to put on my brave face, not just for others but also for myself. Sometimes I have to fake it until I make it, I convince myself that if I look and act OK that I will eventually feel OK. Some days I have to leave the house and face the world with an open heart, no matter how much it pains me. If I don't leave the house I would be letting lupus win, I would be saying "You know what? You own me, you have imprisoned me." Lupus doesn't own me, I own me, I make the decisions and so no matter how scary life gets, I have to keep going. I have to step outside, face each day, and convince myself that I will be OK even though I'm well aware at the end of the day I may not be. This is my life, I can't change it, and the only choice I give myself is to manage it all to the best of my ability.

A lot of people think I'm extraordinarily brave because of this. I'm not, I'm no braver than any of you reading this. I'm sick but I am also lucky enough to have moments where I completely forget how screwed up my body is. I face a lot of daunting situations and my life is full of what if's? But it's a life, a life that a couple of years ago I was pretty sure that I wasn't going to have. When faced with a life that isn't exactly picture perfect all you can do is stand up and fight for each day. It doesn't make me brave, it makes me just like you. We all fight for each day, some of us in different ways than others. But we all have to fight in a way that is difficult for us. Bravery isn't based on the difficulty of the challenge we are trying to overcome. It's about reaching inside of yourself and despite being scared to death, you push on. You fight with all of your strength and even when you want to quit, you make that defining choice to keep living.

So no matter how sick I am, I'm going to be brave. I'm going to wake up each day and face the world as best as I can. If all I can do is make it down the stairs and up again, so be it because it was my personal best. If I have the ability to make it out of the house, I will. And if I'm really lucky, I'll forget for a moment how sick I really am. With a little hope and bravery I'll keep moving on. That is how I'll do it.