Chapter 22

FEEDING FRENZY

My recovery seemed to be at a standstill. I wasn’t getting worse, but I wasn’t making progress either. I was so congested and my lungs weren’t clearing. Over time, it occurred to us that it might be the canned formula, just as Maria had theorized in the hospital. When Bruce would “fill my feed bag,” as I put it, occasionally there would be drops of back spray that would land on the wooden floor next to my bed unnoticed. The next day the droplets would be as hard as cement and someone would have to scrape them off with a plastic knife, taking the poly on the floor off with it. This was what was going into my stomach. I was surviving on this processed liquid cement while I was trying to recover from the most traumatic health crisis in my life, and I would never have put something like this in my body at the height of my fitness. When I got better I resolved to treat myself to junk food more often (carpe pizza!), but for now, I had to heal! After a post on Instagram that showed my feeding setup, people who had tube-fed children started reaching out on social media with recommendations for alternative formulas that were organic and natural.

Time for your pouch of goodness!

With Jim’s help and advocacy, I started to use a variety of natural tube formulas for my PEG. Rather than using a machine that pumped in the processed goo, the new formulas were mixed and PEG-ed through a syringe.

Food, fun, and family were always interconnected in my life, so this new existence with the food PEG tube was seemingly the opposite. Just to keep me alive, nutrition was pumped into my body in an awkward, humiliating way and was not enjoyable at all. All the other elements that made food part of life were gone. So Jim creatively made the process the best experience it could be for me. The double meaning of the term “pegged” was not lost on my comedian husband. I am not sure what it means and I never looked it up because I am sure it’s gross and dirty, but I can guess. The one thing I am sure about is that its principal meaning is not mixing up a bag of puréed food formula, sucking it up into a plastic syringe, and injecting it into a rubber tube running into the stomach.

Jim was the primary “pegger.” I remember the first time Jim brought me into the kitchen for this; he was all set up with the mixing cup, the food pouch, and the big plastic syringe displayed on the counter. “What is all this?” I asked.

“Are you ready for your pegging?” Jim asked seductively.

“Not really…”

“Uncap your food hose and get ready for Chef Jim to mix you up some… (looks at a pouch) chickpeas, carrots, and spinach! Yum, yum, yum! Somebody, film this!”

In true Jim form, he turned this escapade into a cooking show–style sketch that he posted on YouTube called “Feeding Frenzy”:

When it was time for a “feeding,” the iPhone camera would be rolling. Jim would shake the formula around like Tom Cruise in Cocktail, describe what type of ingredients were in the formula, and then explain in step-by-step details to the “audience” how to expertly PEG his wife. He even lit a candle in one episode to make the process more romantic. Every time we had a visitor and it was time to PEG, he would create another installment of this show with guest peggers, like Trish. “Would you like to ‘PEG’ my wife?” He would then proceed to criticize the way the guest was doing everything. Even though one could think that this was a silly, infantile way to deal with a delicate, somewhat gross activity, we received an outpouring of support from tons of nurses, speech pathologists, and patients, thanking us for “normalizing” this not-so-uncommon medical procedure. Peggers of the world, unite! No not that kind. Get your mind out of the gutter.

The romantic dinner.

Again, Jim found his stride in caregiving, not only helping me to get through this awful time by being hilarious, but also helping the food tube community that until this point I had no idea existed. Sharon’s new name was not a random choice; she was named after my food PEG. Thank God for comedian caregivers!

“Peggy”