(This is a continuation of posts about my experience with Guillain Barre Syndrome that began with the post called Heartbeats.)
Within 36 hours after being diagnosed with Guillain Barre I could not move my shoulders, neck or anything below, so I could not write. I was breathing with the help of a respirator, so i could not speak. Any normal form of communication was impossible. Between a speech therapist, Jodi and my sister Candy a way for me to communicate was devised. I would be given a range of letters and blink twice when the answer was a yes to that range. Then I was given each letter in that range one at a time; again, I would blink twice at the correct one. The other person would write down the letters until they formed a word, then we’d go onto the next word in the sentence.
The alphabet was divided this way:
Between B and J: BCDFGHJ
Between K and R: KLMNPQR
Between S and Z: STVWXZ
I’ll share two times we used this system.
The first was an argument with the neurologist. Yes, even if it was not clear through the words I spelled, in my mind I was argumentative. It began by him asking Jodi how things were going as if I wasn’t even there. I blinked my eyes franticly and luckily Jodi noticed. “Did you want to say something?”, she asked me. I blinked twice. She got out the pad and pen. “Is it a vowel?” she asked. I didn’t blink. “Is it between B and J?”, she questioned. I blinked twice. “Is it a B?” No blink. “Is it a C?” No blink. “Is it a D?” No blink. “Is it an F?” No blink.“Is it a G?” No blink. “Is it an H?” I blinked twice. The first letter was H. One letter down, six more to go I thought. “Is it a vowel?” Jodi asked again. I blinked twice. “Is it an A?” No blink. “Is it an E?” No blink. “Is it an I?” No blink. “Is it an O?” I blinked twice. “ So H-O?” Jodi inquired. I blinked twice again. We continued until I spelled H-O-W L-O-N-G. The doctor responded with a simple “I don’t know”. I went through the whole process again and spelled out H-O-W L-O-N-G. The doctor responded again with a simple but emphatic “I don’t know”. I decided to make the question more pointed: W-I-L-L I D-I-E. The doctor responded with a simple but solemn “I don’t know”.
The second was to have my sister get gifts for Jodi for Valentine’s Day which also was our anniversary. So it’s much easier for you to read then it was for me to spell, I’ll simply tell you the order I gave my sister. I asked her to get a dozen long-stem red roses and a heart shaped box from Josh Early’s with half caramels and half peanut yum yums (know as peanut rolled eggs at Easter). Candy did my bidding, and the flowers and candy were delivered to Jodi’s office on February 14th. I waited anxiously to see her that night. Although she expressed her gratitude the next day, Jodi spent the evening of our second anniversary at dinner with her family.
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