“Even when we don’t desire it,
God is ripening.”
-Rilke, The Book of Hours I, 16
I’m sitting here at my desk watching my cursor blink as I rub my tongue over the aching gums around tooth six. It’s become the razor on my wrist. It’s the place I can touch over and over to distract from all the other pain. A few days before Christmas in 2019 I suffered a tiny injury from popcorn. Twenty months later I am not only resigned to this wounding, but it’s my darling.
I’m not exactly sure when it began. It was a slow fade during the eight weeks in bed recovering from my tethered cord surgery in March. Lent ended. Easter came and went. I wasn’t making it to my morning nest chair. The spiritual discipline and delight of beginning each morning in praise and prayer was lost. I was lost.
During this dark time a dear friend sent me a care package with a tiny canvas she painted. The above quote was hand written around the borders. How did she know? I had nothing left to seek Him anymore. I wrestled with childhood theology. The inkling of desire. The struggle with doubt. This was supposed to be the proof He’d claimed my heart. But what now?
Several weeks ago, as I was fighting for my Rituximab infusion and making plans to travel back to Ohio for treatment, I ordered the book of Psalms. A single volume. I counted the days left in Ordinary Time in the liturgical calendar and purposed to read one Psalm a day until Advent. My hope has been an honest soul reckoning and a strangled prayer, “If I’m yours, come after me.”
I cannot catch you up.
I can tell you what I did today.
My dad picked me up early this morning to drive me to pain management for occipital nerve blocks. Six deep needles under X-ray and ultrasound to avoid all the hardware and shunt tubes. If they help even a little we will ablate all the nerves in another procedure. Skull base headaches are just one brand of pain I carry, but this doctor has given me new hope. I was supposed to rest my head and neck when I got home. Instead I pushed myself to sit here in my office and fight.
Made my first entry in my post nerve block pain log.
Called the Phoenix Children’s pediatric cardiologist who did Danica’s echo to make an appointment. We are referred back to him because of Danica’s scary tilt table results. Got an appointment for September 14th.
Called the diagnosing cardiologist who prescribed two meds for Danica on Thursday to follow up on a peer to peer appeal because our insurance denied the very expensive drug that will be safe enough to slow her little heart. Still denied.
Called the drug company. Yes, they have an assistance card that will help up to $160 a month for one dose daily. She needs two. It’s not nearly enough help.
Researched getting the drug from Canada.
Cried a little.
Called scheduling for imagining. Emailed the new order from Johns Hopkins for an MRI for Danica. Her X-Rays and CT show the slipping below her fusion. Got an appointment for next Wednesday morning. Called Hopkins to let them know she is scheduled.
Called Delaney’s neurosurgeon at Weill-Cornell and left a message with her symptom diary. We see him virtually next Friday to go over her X-Rays and MRI.
Called our car insurance company about the $150 a month extra we are paying to insure Delaney who will be returning to college and rarely driving. Got it reduced to $100 a month because she will be over 100 miles away. I mapped it door to door. 104 miles.
Called the local oncologist who has agreed to see me and consider my autoimmune encephalitis/PANS case. Made an appointment for August 19th. Called my Ohio oncologist to have entire history back into 2015 sent to him. Filled out new patient paperwork including an agreement I will pay 20% for appointments and any scheduled infusions knowing this access to care will mean several thousand dollars each treatment. But thank you God, maybe, no travel and collapsing in my own bed. Please.
Cried a little.
Fielded interruptions from the girls trying to shop for back to school online. Why is this such a hard and joyless thing for us year after year? No, that’s too expensive. Go through your closets. What still fits you? Danica collapsed half way through with racing heart. Mom, I can’t do it. She needs her medication. Mom, I don’t need new shoes. Mom, Go lay down.
Called the cardiologist again. Fight dammit.
Logged onto ASU. Did the math. Texted Delaney her semester budget for food and miscellaneous expenses. Bought her a sturdy grocery tote bag on Amazon to carry her groceries in. Worried about her instability symptoms and if she can carry heavy groceries at all. She made an appointment on August 10th in Tempe for fingerprinting and an I-9 form for her new job at the ASU art museum. Worried about her physically being able to work and go to school full time.
Ran my tongue over the screaming gums around tooth six. Yes. That’s better. Focus there.
Logged pain. Called the pain management office to share my pain log. Did you feel relief? Yes. No. Maybe? It hurts so bad, but there were needles. No, I wasn’t resting. My arms and hands and low back and legs are sore and twitching. Right. Totally unrelated because you’ve never heard of this. Okay. Thanks. Made a follow up virtual appointment for Monday morning.
Laid down and watched an episode of Gilmore Girls with Danica.
Cried a little.
Texted Dan I can’t make dinner. Can he stop and buy me sweet tea? I can’t make any. I’m sorry.
Answered a text from a friend. Do you think your Ritux infusion is working? Ummm. I know it was too little too late after too long. I will need it again. Count the five weeks. The week of August 29th.
I’m suddenly in Psalm 6 with David.
“Be gracious to me, O Lord, for I am languishing;
heal me, O Lord, for my bones are troubled.
My soul is also greatly troubled.
But you, O Lord, how long?
Turn, O Lord, deliver my life;
save me for the sake of your steadfast love…
I am weary with my moaning;
every night I flood my bed with tears;
I drench my couch with weeping.
My eye wastes away because of grief;
it grows weak because of all my foes…”
Come after me.
I’m not enough unless you come.
Meet me here again.
This song has been on repeat day after day after day.
(Steadfast love. Friends, you are His for sure heart for us. Until there are new words. Thank you.)