Coping | IBD
On January something, Olivia’s battle with Crohn’s took a threatening turn. What was many years of upset stomachs, events planned with questionable participation, and a spat of headaches that seemed to come and go with unpredictable frequency, this last hospital trip was a sprint in an ambulance.
Senseless Crohn’s disease was attacking Olly with intent.
With each test, there was a difficulty. The usual bedside lumbar puncture couldn’t be done routinely. Instead, the riskier spinal tap under the blast of radiation to guide a neurologist’s scope was necessary. The routine IV used to deliver medicine wasn’t working. Now, a central line had to be inserted to deliver the medicine Olly needed; without the hose that would dangle from her upper arm, medical options were becoming fewer. The iron infusion would help raise her hemoglobin level. It didn’t. More blood was necessary. First, there was too much pressure in her head from the clots at the base of her brain. Then there was too little, causing even more head pain. Every. Damn. Thing. Went. Wrong. The spasms continued along with a marathon-pace heart rate. Crying out in agony ebbed and flowed as the Oxycodone or Dilaudid took hold.
On the direst day of this god-awful hospital stretch, I wrote Olivia’s obituary.
There were things that people needed to know about this soft-spoken girl that I am sure I wouldn’t remember to capture if I had to pen the news while planning my younger daughter’s funeral. While writing the requisite, Sister of…, good friend to…, beloved niece of…, it became very real that what was happening since I last got personal with Olly’s saga, was, in fact, becoming real. Please send donations to Girls with Guts…. Visitation will be… A year ago I wrote my cousin’s obituary after she took her life. And two years before that, I wrote my mom’s. I knew a clear head would be needed. I had practice. Who the hell writes a twenty-two year-old’s obituary? As all of the things that had gone wrong started to mount, every night for weeks, when I plugged my phone in to charge at bedtime, I played and played and replayed a late-night ring with the voice telling me to get to the hospital. “No, now! You need to get here now…” I could hear it then. And still now.
And with nowhere near the same haste that landed her in the hospital, things turned. Crohn’s loosened its grip. Remicade is working! Her pain eeked down. The color started to come back to her Prednisone-puffed cheeks. The spasms were less spasmy. Hemoglobin levels started to migrate towards normal. The blood loss and joint pain were fading.
The doctors agreed, most people don’t leave the hospital healed. Just healing. So it was time to go. This isn’t a follow-up piece sharing that familiar end-of-the-movie, good-overcoming-evil fairy tale closing. There isn’t stirring music playing in the background as the little girl races across a wheat field to her waiting puppy. Olivia has a long way to go. Gratefully, she is free of the hospital, the ‘round the clock blood draws, vitals’ checks, and “food.” Her care was extraordinary. The doctors pushed themselves to get her better. The nurses were there at every turn, even watery eyes when she walked from her room for the first time in nearly a month. Carol, that tidied Olivia’s room, talked and soothed and rooted for us every day.
The hard part is at home. A walker and shower chair are parts of the routine for now. There are visits from an infusion nurse, physical therapist, occupational therapist, and deliveries of medicine. The daily medical rounds have ended. But so, too, has the onslaught of that food. Olivia got her beloved noodles from HoneyGrow for her first outing. And she has walked a cool mile to and from the river without her walker on a good day. On a not-so-good day, well, we aren’t focusing on those. Each day gets better. Sure, her vision is still a bit bullocksed as is the feeling in her fingers. Reading, drawing, and knitting are not quite ready to be revisited. But that’s ok, because it isn’t permanent.
So, Olivia is ending round two, still standing and kicking ass, albeit slowly, since she is still a little wobbly and her ass-kicking is not very forceful. But this round goes to Olly. With more work, maybe a hiccup or two, the next round goes to her, too. She’s going on a rescheduled trip to see Moulin Rouge in New York City soon. So, hey Crohn’s, stay down – she wants to see Harry Styles this summer.
Jim Berman is a kitchen lifer. A career cook, as an executive chef, Jim runs a conference center kitchen in Delaware. Jim’s daughter, Olivia, is a Crohn’s patient. His writing is regularly featured on Foodable, Edible and Reverb.