I am not as holy as I hoped. When my reserves are depleted and every person who needs me grates against my suffering like fingernails on a chalkboard, I fail.

I’m entering my fourth month since developing vestibular neurontis.* By the second month the physical weakness sent me into a faceplant. Feeling horrible shows me the depth of my impatience, irritability, and tendency toward discouragement.

I’m irritated with my best friends. Way too often. I’m fed up with my body, my world, and everything I stumble into. I alternate between too much intensity about inconsequential details and indifference about significant decisions, depending on how clearly I can think. And one time I slammed a couple doors to demonstrate my mature coping skills (since my family hadn’t seen them yet).

I sort of assumed that if I ever had cancer I’d be one of those super spiritual, serene patients. This battle with a non-fatal illness is calling my bluff. If the path to holiness were like our Chutes and Ladders game board, I just took a slide and landed back on Start.

During the three months waiting for a diagnosis I cried (not in front of most people) because I hate feeling helpless and out of control. Now that I know I’ll get better, even if it takes the rest of the year, it’s easier. But I still can’t be everything I need and want to be. I’m still lying on the couch because I can’t walk the mile to whatever. Trying to make a so-called normal life is harder than herding cats. And instead of Bible verses I think of a quote from the iconic (to me at least) novel The Fault in Our Stars: “The world is not a wish-granting factory.”

That’s probably in the Bible somewhere–maybe Job.

During an endless night in the emergency room I occupied myself tallying recent medical experiences.

  • 1 biopsy
  • 1 cane for balance
  • 1 chest xray
  • 1 MRI
  • 1 OAE test
  • 1 reaction to medication
  • 1 rotational chair test
  • 1 VEMP test
  • 1 VNG test
  • 2 CT scans
  • 2 EKGs
  • 2 audiology tests
  • 2 ultrasounds
  • 3 days in the hospital
  • 3 tympanometry tests
  • 3 days in the ER
  • 4 IVs
  • Bloodwork, appointments, paperwork…
  • Physical therapy sessions outnumber the stars in the heavens

Instead of expanding my current job, adding new volunteer work, and gaining new dance skills, I just hope to faithfully perform my physical therapy multiple times a day until I can resume all of my basic responsibilities. But it’s hard. It’s humbling. It’s a word I don’t want my son repeating (yet).

I don’t think God expects me to quote verses or be inspirational about this. I think he tells me to be humble, accept support, just keep swimming. (How could I not identify with Dory with my memory loss?)

I’m not angry I’m sick. I’m thankful I’ll get better and learn to adapt so I can do everything I used to. But it cuts deep that the true me is so ugly and sickness won’t let me keep my masks in place. For this perfectionist, it’s infuriating.

I’m at a loss fingering these dark threads running all through me.

This illness left scars and now my brain is (slowly) compensating for the losses. Survivors aren’t healed. But even as our bodies deteriorate and sometimes destroy themselves, our souls are rebuilt. And I–we–desperately need each other’s company as we try to get up tomorrow morning. It’s gonna be a battle.

Here’s to the ones who don’t give up.

*Or what they told me was neurontis but months later I discovered was MAV (migraine activated vertigo).

When Illness Shows How Unholy I Am

A Survivor's Life, Chronic Illness, Depression, Suffering