Physical Therapy

Flobee’s referral helped us to get an appointment for physical therapy. We went in for physical therapy with Bonnie (a specialist in physical therapy for neurological disorders). Dad wheeled me into the hospital in a borrowed wheelchair. Bonnie showed Dad how to support me when we walk together. I wasn’t walking on my own at all by this time. She wasn’t impressed with how Dad held me up by my belt. “You guys are making me crazy,” she said.
Bonnie also tried to teach me how to use the walker that Mom had gotten at the thrift store. I had tried it out when she brought it home, but I gave up on it after a short time because my balance was so bad that I just tipped over with it. Bonnie supported me with the walker. She kept telling me, “slow down, take small steps.” “I CAN’T!” I couldn’t get my body to go slow. I had no control. I was enthusiastic about learning to use the walker and becoming more mobile. I was fast, out of control and enthusiastic. Bonnie said, “you are making me crazy, you are going down.” Physical therapists are all about preventing falls. I told Bonnie I fell down all the time, no big deal. It is a big deal if you are a physical therapist.
At the end of our session, Bonnie, Dad and I chatted about my symptoms, Flobee and Stanford (she had worked there). She thought that I should be admitted to a hospital for a short stay (a week or two) of physical therapy. Her advice on our problem with Flobee was to go to the next appointment in the wheelchair (I wouldn’t have much of a choice by that time) and get the referral to Stanford.
While we waited for the next appointment with Flobee, Mom got a call from Stanford. They could not accept the referral because Flobee had written ‘patient (self) referral’ instead of ‘doctor referral’ on the form. Mom was so mad. She called his office. He was on vacation. SABOTAGE!

Goodbye Flobee

At our final visit to Flobee (after his vacation), we showed up in the wheelchair. We had a lot of questions. He said the test results were normal and that I didn’t have MS (based on the evoked potentials). Dad asked questions that he wasn’t answering. I got frustrated with him and asked questions too. He called me maam. “That’s it,” I thought, “I’m done with him.”
We told him I was getting worse. He called it a “subjective opinion.” He didn’t believe I was getting worse. We told him about the Stanford referral and how it has to say doctor’s referral, not patient’s referral (like he didn’t know). He said he would fix the “technicality.” Since we were so concerned and demanding, he prescribed an MRI of my brain even though he thought I didn’t need one (I hadn’t had a brain MRI since June 9th in Montana).
We also requested speech therapy. Flobee said I didn’t need it. Dad and I couldn’t believe it. I was barely understandable. We said nothing. Luckily, Peter was there for that appointment. As we were leaving, Pete went back to demand the speech therapy referral. Flobee told Pete that he had 30 years of experience and he didn’t think I needed it. Somehow, Pete got the referral. We felt defeated, and we were mad about the sir and maam routine. The diagnosis on the speech referral was encephalitis. GOODBYE, FLOBEE.

The Haircut

Mom and Dad took me to Supercuts in the wheelchair. “Might as well fix what we can,” Mom said (we also whitened my teeth with whitening strips).
While I tell you about the haircut, bear in mind that I had lost the ability to control the volume of my voice and had been shouting for months without realizing it.
Mom gave them my name, and I spotted the basket of lollypops on the counter. I was obsessed with sweets, I NEEDED a sucker. “SUCKERS. GET MO ONE. NO, GET ME THE BASKET, I WANT TO PICK IT OUT.” The waiting room was full. People stared. I had embarrassed my parents, AGAIN. “GET ME A SUCKER. GET ME A SUCKER.” I NEEDED one NOW.
I got a sucker and Mom and Dad pushed me outside to wait my turn for the haircut. When I finally got to suck on the sucker, I choked on it. I couldn’t swallow the drool properly, so I choked, bad. I coughed and coughed, I couldn’t stop. Mom took the sucker. I bent over and coughed and red sugary slobber drained out of my mouth onto the ground. Mom and Dad watched in horror, Dad was ready to give me the Heimlich Maneuver. My eyes watered and I coughed. The coughing stopped.
“GIVE ME BACK MY SUCKER.”
“No.”
“PLEASE.”
“No.”