The Morning After (A Story About Lupus)

Behind my sleepy eyelids, I can see the glow of the sun coming through my window. It is morning and I have a sinking, grieving feeling that in just a moment, I will bear the full consequence of yesterday's indulgence.

I try to blink the heaviness away from my eyes but can not; they are swollen almost shut. My face feels like a plaster mask is affixed to it and a strong cry of mourning builds up in my throat. I have been here before and the sorrow of recognition hits me like a wave. I manage to hold back the sounds of grief so I won't disturb the tiny blonde kiddo sleeping on my shoulder.

His cheeks are sun-kissed from swimming and playing the day before... a gentle rosy kiss which I know will be a stark contrast to what has happened to my own face. I haven't yet seen a mirror but I already know what I'll find there. I won't even be recognizable beneath the swelling. The sun is my enemy... and she had seduced me with her warmth and beauty... and with a touch of poison.

I have lupus and the sun is my enemy. Actually, my own body is my enemy.  When the sun shines on me, it triggers my body to attack itself... organs, skin, joints... and during a flare, there's really nothing I can do to stop it except stay in my cave and manage it. I have a rough idea of my limits, but yesterday... there was a celebration and a meal outdoors and kids to be monitored and life to be lived...

And so I let the beauty of the sun fool me again. Or rather... I knowingly went beyond what I knew my broken immune system could handle and am paying the price. 

The tears won't come until the swelling goes down and so I gently move my little prince off my arm so that he is not startled by my distorted appearance when he wakes. There are worse things than a funny looking face, but I do not want the small sorrow of even a momentary rejection this morning. 

I get out of bed and feel my ankles jiggle with the swelling. My joints are badly jarred by the slight impact on the wood floor. All 115 pounds of me... feeling like 40 years going on 100 and wishing like mad that I could at least have the sweet relief of a good cry.

But those tear ducts aren't working and so my soul cries instead as I touch my face. In confusion, I promise God (again) that I won't care two figs about what I look like as long as he lets me survive this long enough to mother my kiddos into adulthood. Just twenty years (or more), I ask. Please. 

In the emotion of the moment, I don't know if bargaining with God is okay. And I don't know if it works. I only remember the face of the crucified Christ Who loves me and I think it's okay to reach out even if I'm confused. Someone once told me that we shouldn't wait to talk to God perfectly or else we will never muster the courage to talk at all. And so this morning, He hears a lot of mixed up things from me. 

I marvel at how this swollen mask unmasks me and reminds me of how elementary I am in all things. I am nothing but a tiny girl asking her dad question after question and begging for a bit more ice cream.

"Daddy? Why did God make the moon?"
"But why did He make nasty mosquitos?"
"If God is all-powerful, why does He let people get hurt?"
"What if we pray harder? Can we stop the bad things?"

And therein lies the question that keeps people so far from the heart of Jesus Christ. We don't want the cross. And we can't see His love through our pain... we can't understand why He would let it hurt so much.

My inflamed forehead rests on the cool bathroom mirror and I think of life... how much I want to be alive and well. And I think of death... and how much I want to someday be fully alive through death. Somedays it terrifies me and some days it sounds like the relief that I pray for. That desire piggybacks on my emotion of the moment and swells into a deep longing for the Presence of Jesus Christ. 

I shuffle downstairs to grab my water, supplements, essential oils, and to figure out what kind of breakfast will help facilitate a healing day. I poke at my iPad until I find Laura Story's 'Blessings' and I press play. I listen and breathe...

"What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst
This world can't satisfy"

I thank the Lord over and over again for the gift of illness... and then I put on some praise music and gently dance in a way that doesn't hurt. I can't go out in the sun today because my body doesn't work right and the sun is still  somehow my enemy. But someday, I will bask in sunlight forever...

I will not hurt. 
I will not be afraid. 
I will give thanks and dance forever.

I open my email and see an invitation to come play at the park. The sun is shining and I tell the hostess that I cannot make it today. Maybe next week.

And it'll be okay. It's all going to be okay.