I told my first neuro-psych (at Therapy Boot Camp in OR) that this was like “a really bad reality TV show,” and I stick by that assessment. He said he wanted to hear more about this “reality TV show” idea, and I must have obliged back then, but the notion has evolved in the ensuing year and a half, and really hit home Tuesday when I got voted off the island.
This whole experience is like Survivor: The Brain Injury Edition. I’ve actually never seen Survivor and am not implying that it’s a good or bad show – it’s just that the show has made it into American consciousness to the point where it’s an easily recognized reference. My parents and I are the only contestants, and since they are the Mom and Dad they hold immunity all the time. If anyone is getting voted off the island, it’s me.
Dad drove Mom and me to Planet Rehab on Tuesday morning where I met PT37, who is going to treat me now since PT36 is moving home to OH. We then had a lovely lunch and made it back home around 2. I had announced my intention of accompanying Tanpo to his first Speech Therapy session that afternoon at lunch. By the time I had visited the little girls’ room and had a decaf espresso, Mom informed me that she and Dad had overruled and decided I was going to stay home instead of going to ST. It was either that, she explained, or stay home from Tuesday night meeting, and I have lived at home long enough to understand the pecking order. So when I was voted off the island, I went upstairs, said “hi” to Ed, and promptly fell asleep.
It turns out Tanpo came home late from ST, so we stayed home from Tuesday night meeting anyway and missed GSK (sorry, GSK!). The therapist sent Dad home with some papers, one of which contained very clear expectations for these Therapy sessions. Basically, Tanpo is required to show up for therapy multiple times a week to learn the “healing gestures” that will preserve his throat and help him survive the “vocal rest” period mandated by his surgery on 10.24. I have no idea what “healing gestures” are. My idea of a “healing gesture” is the apple crisp Mom made last night. (It was SO good, Mom.)
Of course it all comes back to food. They occasionally served some kind of fruity crisp thing at Therapy Boot Camp in OR (the 3rd hospital, where I was eventually cleared to eat a regular diet). I was also voted off the island there, but Mom and Dad weren’t used to overruling me, yet. Thankfully there were many therapists, doctors and nurses willing to help. I attended a Memorial Day BBQ the hospital held for the patients on the Monday after my arrival. I had no desire to go to the “hateful BBQ” as I referred to it mentally. It was a very nice event, I assure you, but I was protesting my residency in the hospital in general and was not in any mood to participate in any group activities at that point.
Eating restrictions seemed to be a little relaxed, although there were plenty of staff members on hand to help if you were in distress. So I nibbled on some fruit salad and a hamburger patty and then asked Mom and Dad for some potato chips. Dad immediately trotted off to get a bag of chips, but when he returned there were no chips in sight. One of my long-suffering recreational therapists, L, slid into the seat next to my wheelchair. She apologized profusely and told me that she had informed Dad that she was going to be the “bad guy” and tell me that I couldn’t eat chips yet since I was still on a “mechanical soft” diet. Apparently the eating restrictions hadn’t been relaxed after all, and several sets of eagle eyes were scrutinizing what patients or caregivers picked up off of the buffet line.
Later that day ST4 appeared in my room to give me another swallowing test. She must have heard about the potato chips and felt sorry for me, so she came to see if I could eat normal food safely now. I passed the test and she referred to me as “Dorito girl” from then on. As a sign of progress, I put the picture of potato chips on this post because they were part of my lunch a few days ago. The big news is that Mommy left me at the table for a couple of minutes while she bought a loaf of bread and so I munched unsupervised momentarily. It was a big step forward for me, so I documented it. Dorito girl rides again!