Most nights this semester I lie in bed feeling like I'm standing at the edge of the Red Sea with the angry Egyptians breathing down my neck. I cannot see a way forward, cannot imagine how I will make it through another day. And yet, the sun rises each morning, my heart still beating, and the sea splits in two: a way forward. I'm able to dress, drive to work, and spend a couple of hours with my beloved students before falling back into bed, dizzy, nauseated, aching, throbbing, shaking with fever and fatigue. My bed has become a dear, cozy friend; and flannel sheets are one of life's best gifts.
I woke up wiggling my toes and fingers this morning. I think it's simply magical that I can move my appendages however I want, whenever I want, because of synapses firing in my brain. Have an itch that needs scratching? No worries, your body's magic will take care of that for you. Want to eat a bowl of fresh raspberries and cream? Just whip out a spoon and wonder at your spoon-holding magic.
Sometimes the muscles in my hands and legs twitch and tremor, reminding me that I have a neurological disorder, and that neurological disorders sometimes turn into neurological diseases that paralyze the body, sapping it of some of its magic. I beg God to spare me this kind of limitation, but I know he might not. And so I put on regular magic shows: I wiggle my fingers and toes like there's no tomorrow; I flex my legs, and spread my arms wide, and bend my elbows and knees.
There's other magic I'm afraid of losing. Some days I can feel something attacking my eyes. On these days the vision in my right eye is a little blurry, or the world grows a little darker, like my brain has selected an Instagram filter — X-Pro II, perhaps — for my eyes. Sometimes my eyes ache, and I remember that the cytomegalovirus, one of the viruses infecting me, causes blindness. One of my doctors doesn't think I need to be concerned about blindness right now, but sometimes I am. So I continue to be diligent about noticing things — all the things, all the time. Roses that look like they've been dipped in sunsets; lizards doing push-ups; fathers cradling their babies; toddlers licking, dripping, squishing soft serve ice cream; light dancing through trees and gilding spring leaves. I don't want to miss a thing, as long as I still have the magic of seeing.
There's other magic I fear I might lose. Some days my hearing disappears for just a second or two before returning to normal. Other days, my hearing is so sensitive normal life noises hurt my ears. The audiologist confirmed something is attacking my ears, so I beg God to spare me the loss of any of my senses. And then I listen to the birds, or Coldplay's new album, or the neighbor with a penchant for belting mariachi from her back porch. Yesterday I sat at the piano in one of my classrooms and played worship music while a gifted student sang. Sometimes I joined in with harmonies, and I tried to commit every moment of the magic to memory.
It's a heavy burden, knowing what could happen to my body if I can't find effective treatment. So I try not to interpret the symptoms, not to mentally scurry ahead to a potentially disastrous future. I try to live in the moment. But this moment I am in my body, and being in my body is the hardest responsibility God has ever given me. If it weren't for your prayers, I might give up hope that there's any way forward.
Here are some ways you can continue to pray:
1. There's a new treatment I want to try. My body is rejecting most food and medicine, which makes healing feel practically impossible, and this treatment might be able to eliminate my body's allergies and sensitivities. It would also address immune dysfunction, viral and bacterial infections, trauma, and chronic pain. I have my initial consultation with the doctors (a husband/wife team) this Monday, and I've scheduled my first treatment for Friday, April 15th. I'm not sure if I'll go through with the treatment just yet, though, as it will likely make me much sicker.
Would you pray for discernment as I figure out when to begin treatment? I feel like I need to try it now if I'm going to make it to the end of the semester; but I also fear it will make me too sick to finish the semester. Right now I'm inclined to try one treatment (I'll likely need upwards of 100 treatments, and I've heard the first 15 are hardest for patients like me) on Friday just to see how it goes. I'd love your prayers that the trial run doesn't cause any lasting problems.
Would you also pray for supernatural wisdom for the doctors as they diagnose and treat me?
2. There is an event next week — on Wednesday and Thursday —with some of
my most favorite people, and I am longing to attend. Oh, you guys, I so
want to go and be with my people. Would you pray for miraculous healing on those days?
3. You may remember that God provided an opportunity to meet with Dr. K., who has a clinic in San Diego that helps patients like me. I was scheduled to go into his clinic the week of Easter break for testing and treatment, but the Lord closed that door at the last minute. It seems like he wants me to wait on seeing Dr. K. Would you pray for wisdom as figure out when to reschedule with him and his team of doctors?
4. I'm planning to return to my folks' place for a chunk of time this summer like I did last summer, but I need wisdom about when to travel, since a number of my doctors are down here and treatments could make it hard to travel.
5. Mental and emotional stamina.
6. Protection from the progression of disease, from complications, from new symptoms and limitations, from the schemes of Satan and his minions.
7. I have a list of other treatment possibilities, clinics and doctors I'd like to visit etc. in the next few months, and I need wisdom as I prioritize them all.
Thank you, my friends.
Do send me your prayer requests. I think of and pray for you often.
P.S. This week I asked God to send me flowers. I've only prayed this prayer a couple of times in my life, and each time I am amazed that he cares to respond. But he does. Oh he does.
On Monday my dear friend, A, trekked across the desert with her 1-year-old in tow to bring me bone broth she's been accumulating for me all semester. Once she was here, she drove all over Orange County, taking me to the doctor, running errands etc. She continues to be my human angel.
When she got home, she sent me this photo with an explanation:
"My neighbor (I think you met her briefly once) knew I was going to visit you yesterday and had hoped to send me with these flowers for you... She's got two little ones and ended up not getting them to my doorstep early enough before I left on Monday... But I came home to them on Monday. So please know that people all over are thinking and praying for you. So I keep looking at these roses and thinking of you. They smell amazing and I hope you can imagine them... I will bring some next visit :)"
P.P.S. Many of you have asked how I'm faring with the stomach bug. Thank you for checking in. The bug did a number on my body. I'm still feeling its effects and it seems to have worsened my preexisting systemic and G.I. tract infections, but I have thankfully been able to remain faithful in my work responsibilities this week.
© by scj