My love for Jeff went beyond any love I had ever felt before. I just wasn’t aware of it. What I was aware of was the fact that goodbyes are one of the hardest things in the world, and I never wanted to have to say my goodbyes to Jeff.
All of Jeff’s doctors assured us that he was at the top of the liver transplant list. They kept telling us that he and his mom could get a call any day to drop everything and rush down to Umass Memorial Medical Center to be prepped for the most major, most life-changing surgery of his life. A surgery that could take his life span of months to a couple of years at the most, and add a lifetime onto it.We were in a race against time. There was a strong possibility that his liver cancer had returned. We were waiting on an appointment with a GI doctor, Dr. Xander to go over his scans. The even more frightening reality was that if his cancer actually had returned he would be immediately removed from the cancer list. I might have to say my goodbyes to him. I usually tried to put all thoughts of his mortality out of my head and just enjoy him, in the moment.
Jeff was a 41-year-old man with liver failure who was barely hanging on the transplant list. He lived at an assisted living facility called “Side by Side”. I was a 24-year-old girl dying from a rare neurological disease. Since December 2015, I had been living at Side by Side as well. We both adored Build-a-Bears. Jeff and I were an unlikely romance but we were both desperately in love with each other
Originally I thought that Jeff and I were just best friends. Due to a physical and developmental delay that according to my doctors
“Seems to be a much less dramatic form of Syndrome X, it’s an extremely rare condition that I can’t figure out whether or not is connected to her autoimmune-mediated autonomic SFN.”
I didn’t produce adult hormones and I didn’t age past the preteen stage, the only times I’d ever fallen in love with before were with my Build-a-Bears. However the night before, I’d had a talk with Melody, my main PCA (caregiver). She helped me discover that my feelings were more than just friendship.
I had barely finished the IV antibiotics for the UTI when I started to feel really dizzy and lightheaded all the time. I would never in a million years have connected feeling dizzy and lightheaded with my g-tube drainage bag
“Your lips look so dry,” Jeff kept telling me, “Do you need Chapstick?”
“I’ve been putting tons of it on,” I told him, showing him the Chapstick I carried in the purse that I kept clipped to the arm of my wheelchair.
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