The time I spend in bed the rest of the week makes Tuesday possible. That, and the grace of God. I often imagine Jesus is standing at the helm of my body-vessel and quieting the stormy wind and waves on Tuesdays just enough that I can make it through the day.
I find myself living for Tuesdays because I get to be up among the living. Looking forward to them gets me through my weekly grind. Yesterday, though, I couldn't push through my symptoms, and I had to leave my PhD class early. I was heavy with disappointment.
Shortly after I got home from class, the afternoon sun flooded my bed with light. I slipped out of my dress clothes and into some comfy shorts, and I laid in that sunny patch for hour, breathing, and praying, and thinking through the month.
My disease is a shape-shifting disease, so every day my symptoms are a bit different. Many of them are constant. These are like the base of a cake. But the icing on the cake? It changes flavors and colors daily, sometimes minute by minute.
Side note: to make this already-terrible analogy more apt, please imagine the cake is made of poop and the icing is made of tar.
I really have no category for the symptoms I have most days, so they're hard to describe. I find myself comparing them to other diseases I've read about. A few months ago I started reading a book about a girl who had a brain infection and subsequent surgery to remove part of her brain and skull. I had to stop reading the book because her symptoms were so similar to some of mine. Descriptions of chemo also resonate with me.
Yesterday I felt the way I imagine stage four cancer feels — like every cell has been invaded by an insidious enemy that intends to kill. Sometimes, when I feel like this, I wish the earth would crack open and swallow me. I read the Psalms on these days. They make me feel less alone.
Recently, bearing my physical burdens has been especially hard. The last month has been full of grief anniversaries for me. Date after date after date marking crushing disappointments and painful discoveries. The turning of the season has also brought with it weather and smells that trigger sorrowful memories. Lately, I feel like grief has become a constant companion — a shadow I cannot shake.
And yet Psalm 23 reminds me that goodness and mercy shall follow me all the days of my life. Goodness and Mercy are the stickiest shadows of all.
And goodness: there have been so many good things this month.
My sister came to visit me last weekend.
She ran errands, washed dishes, drove me to the doctor, rubbed my back, and made me laugh. Having her was a tremendous gift. Rebecca, I love you times one million zillion.
This month I've had so many people lay their hands on me and pray for me; my PhD program director has taken special measures to support me and my health needs as I study; my dear aunt has daily emailed me beautiful prayers for healing and refreshment; a dear friend has agreed to help me research possible medications and treatments since I'm so inundated with medical research; and you guys, I know I've said it before, but THE ORANGE TREES ARE BLOOMING and I am in olfactory heaven.
All of this is like manna in the desert, delivered daily to sustain me. Sometimes, though, I need more than manna. Sometimes I need water. Water gushing from a rock, pooling in a sandy divot, gurgling out of a spring. Without water, I feel like I might just wither up and turn to dust.
Yesterday, I realized it's been a long while since I've stumbled across a well in the desert, and I am parched. I was too tired to ask God to put a well in my near future, but many of you have been asking on my behalf. And God, he's listening.
Today he gave me a well in the desert.
Though I didn't feel well when I taught this morning, I didn't feel as "cancerous" as I did yesterday. Shortly after I got home, my servant-hearted friend, Sean, picked me up to take me to the doctor. It was in the 80s here today, so we opened the sun roof, rolled down the windows, blasted Coldplay's new album, and drank in that orange blossom air.
After my appointment, my friend Sean and I noted that the beach was close. And gosh, that ocean air smelled good. "I think I could go to the beach for a few minutes as long as I could lie down," I said. "It could be good for my body to breathe in that sea breeze."
So we drove to beach and headed for the water's edge where we stood with our faces tipped to the sun and let the waves lick our toes while the breeze tousled and teased.
If my body had let me, I would've stood there watching the water for hours. Whenever I come to the beach I'm stunned afresh that God invented this stuff. This shimmering, undulating, life-sustaining body that thrashes, and foams, and gurgles, and roars, and bends the light into ribbons of color tells us something about God's mind. Wild.
|Sean was a photo journalist extraordinaire today|
After a few minutes at the water's edge I needed to lie down, so I snuggled into the sand. But gosh, that water beckoned; and my symptoms had, strangely, begun to quiet, so after awhile, I walked back to the water. And oh! I longed to go swimming, to feel normal and alive. I turned to Sean: "I wonder if my body would let me swim...? I wish I'd brought my suit..."
"Why don't you go in anyway?" he said. "Just see if your body can handle it. If not, come back and lie down."
So I did.
I walked into the ocean, wearing a pencil skirt, and I let the waves rush over my tired body; and the sun chased away grief's shadow, and the seagulls sang, and for a few minutes I forgot I was stuck in a sick body.
It was glorious.
Thank you for those of you who have been praying God would give me this well in the desert.
I love you, and I'm cheering for you,
© by scj