NOTE: To see the latest update in this story; click here.
A midnight call about blood clots in her brain was the last thing I expected. Perhaps a pinched nerve. Or maybe just headaches from not eating well. This is something different. How did we jump from belly issues to blocked veins in her brain causing massive pressure, double vision, weakness, and full-body spasms?
The days in the hospital are unfolding into weeks. Tuesday morning was the worst.
Seeing doctors reenacting a scene from a Netflix medical drama is not something anybody expects to witness. The words “STAT” and “emergency” were getting tossed around. There are gowns and gloves and alcohol wipe envelopes all over the floor. There is an IV nurse outside of the curtained area, as is somebody with blood bags for an emergency transfusion. There are nine or ten doctors of various ranks and responsibilities outside of her treatment room. There is talk of head infection, of meningitis, of something going on in her brain.
All of this from an illness that makes her poop a lot? How is this day even possible? This isn’t a glamorous disease. It’s not very apparent. After all, the visible parts can include a bag attached at the hip. Olivia wasn’t feeling well during the first few weeks of her senior year in high school. Before that – before Crohn’s, the BC era – Olly was the usual temperamental teen with an entirely too large of a soft spot for animals. She cared about clothes and going to concerts. She read a lot. That was BC. Now, we measure each day if she feels well enough do anything. What started with frequent upset stomachs moved on to weakness and constant states of nausea and lethargy. A few years later, here she is getting emergency treatment, two units of blood, a midline catheter delivering medicine, a lumbar puncture, an isolation room, a liquid diet.
This morning began with Olly asking to die. The pain in her head on that familiar scale of one to ten has topped out at a solid ten. There is no pain worse. She has a neurologist, a hematologist, a gastroenterologist, a psychiatrist, a neurosurgeon interventionalist, a physical therapist, an occupational therapist. Hell, the president of my high school class is big-time doctor out west; even he has chimed in.
It’s ironic that the daughter of a chef has a jacked-up stomach. It’s sucks that she can’t get as excited about food experiences and travel around eating adventures. What’s worse? Being powerless to help with the mess that Crohn’s has caused.
Sure, I make fun of her local support group name, Butt Buddies. “Are you heading to your Ass Blasters’ meeting?” or “How was your Poopy Pals lunch?” I try to use humor to soften some of those challenging days – and to comfort myself, to be a buffer that this kid has a disease. I think we often try to deflect situations in which we feel powerless by using humor. I make dad jokes. Sometimes Olivia is amused, other times – well, not so much. When I messaged Girls with Guts about Olly’s hospital stay, there was an overwhelming response with support and encouragement. It must be so trying for people to constantly show comfort to other people with similar illnesses. It must be draining. These are the same people that have filled her hospital room wall with cards and notes of reassurance. There are some balloons and little stuffed animals.
But mostly, this room is dark. The girl with the glowing straw-colored hair has lost her glow.
There is the Olivia that talks a lot about traveling to Paris. Always talking about Paris. I have hustled her off to Italy a couple of times, but her mission is always Paris. Well, that, and to meet Harry Styles. Oh, yeah, and to see Moulin Rouge on Broadway. For Christmas, her brother and sister got her a ticket for the Broadway show that is supposed to roll around in three weeks. There is also this kid lying in a bed, whacked-out pupils, mostly asleep. We are trying this medicine and that medicine. There is the EEG machine that just wheeled out of the room to make sure that the spasms aren’t coming from her brain. Or are they? There is the parade of medicines, every four hours for this one and every eight hours for that one. But this one… and that medicine… and the IV for the… I have lost track. There is always the uncertainty. This kid is a delicate shade of White Out, most days. On a good day, she is the shade of a marshmallow. Her Harry Styles t-shirt hangs loose on her. Maybe I never understood Crohn’s disease. Her older sister gives her hell about leaning on her illness as an excuse to be a homebody. Maybe I did too. It’s too real now.
By the way, Olivia has a ticket for sale for Moulin Rouge. She isn’t going to make it to that show. Maybe next month. Or the month after.
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Jim Berman is a kitchen lifer. A career cook, Jim orchestrates new menus, works on staffing solutions and manages food purchases. He received his formal culinary training in New Mexico, and has done stints in kitchens in Pittsburgh, Santa Fe, and the Delaware Valley. Jim’s writing is regularly featured on Foodable, Edible and Reverb. Jim’s daughter, Olivia, is a Crohn’s patient.
I pray and believe that she will get through this. Tho my Crohn’s wasn’t affecting my brain yet I was in a life or death phase of my disease when I was very young. Just when she gets through this phase of her disease remember that she’s still sick even if she looks fine. Ask her sister to go easy on her… It hurts when people accuse you of using your disease as an excuse. My family and I are prayin for yall and sending lots of love to your little girl. I know it’s hard but stay strong and don’t let her forget how strong she is. /hugs
I’ve got my Bible Buddies praying for you ????
My son is in the hospital as I write! I can hardly breathe. A tube is placed down his throat to “vacuum” out his upper intestines diseased from Crohn’s! Oh and by the way all of his lower intestines have been removed previously with the exception of one inch! I make myself breathe slowly in and out! My tears are right behind my eyes! It is a mean disease! I want the disease to stop bullying him! Just Stop! He is a hero and warrior working through the pain and relentless fatigue! I eat my dinner! Each bite I grieve knowing my son is hooked to IV’s and chartering an adventure to mentally and emotionally win over this disease! We do not know where it will take him today as his inflamed intestines take over his body disrupting his life. I grieve over the things I eat because I see him suffer! I lament, I want my son to eat too.! His diet is a roller coaster of soft cuisine to experimenting with advised carefully selected throughly cooked foods. The selection leaves him with few options. I grieve for him! Grief, is not depression! It is experiencing in being fully present facing what was and processing the loss and being than a hero too! We laugh with “poopy butt” stories too! And “butt” puns! And today, I weep and cheer him on! I declare a promise of forever hope, love and support! Folks, sometimes we don’t get it! My son with Crohn’s is so incredibly understanding and gracious with his “foodie” friends and family! He does what he has to do! He is a hero! I pray for him earnestly! He is wiser and more insightful and compassionate than anyone I ever met in the midst of suffering from this disease. I thank you for your article. Thank you for sharing! I hope and pray for a cure! Oh no, I just realized that this site is for girls with guts! Well, I just knocked on the door of the girls club for a brief visitation of my son’s ordeal! It’s ok! He is a nice guy!
I’m sorry to hear the she is going through this. It hits close to home. My son was born with Hirschsprung’s disease, a congenital birth defect of the colon. I performed colonic irrigations up to 7 times a day, changed colostomy bags and nursed him through a half dozen surgeries to remove parts of his colon and other stuff I prefer to forget from birth to about 4 years old. Scary stuff. Living through these times are a living hell and hard to see someone you love, your child, in pain. But as you have found out- love, compassion and a sense of humor go a long way. I hope she feels better soon and is able to manage this so she may get on with life and living. No one knows what it’s like till you live it and it’s a club you don’t want to be in. Sending prayers your way.