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.
After Rosh Hashanah, the Jewish New Year, my mom drove Jeff and me back to Side by Side and life went back to its daily rhythm. However, the specter haunting the unspeakable background of our minds was the question of whether Jeff actually had cancer blooming within his belly. Would the presence of this possible cancer permanently remove him from the liver transplant list, which was his only chance at long-term survival?
Jeff had an appointment with Dr. Xander, his GI doctor coming up.
We tried to distract ourselves from the appointment by working on the “Intro to Judaism Class”, watching movies, and playing with our teddy bears, but no matter what, time was ticking by. It was only a matter of time before it was November 2nd and we found out whether or not Jeff really had cancer.
Septic Urinary Tract Infections or Septic UTIs are not fun for everyone. Most people will get a couple of UTIs over their lifespan. I however am a catheter user, which means I get a UTI almost once every two months. Often times they go septic and spread to my bloodstream, becoming a life-threatening medical emergency. A septic UTI goes beyond what most normal people experience, they are excruciatingly painful, like being stabbed up the urethra by a knife, and they cause high fevers. If not treated rapidly enough they become lethal.
I never know when I am going to get one either. Back in October of 2016, Jeff and I were just going about our normal routine.
“I am head over heels in love with you,” Jeff would call to tell me every morning around 6:30 AM, “Oh are you awake?”
“I’m awake now,” I would tell him, “and I am so in love with you my heart is swollen to the size of a beach ball.”
It was all part of our morning routine.
“Did you take your Lactulose or your morning meds yet?” I would ask him
“No, I forgot, I’ll take them right now,” he would tell me. On the other end of the phone, I would hear rustling noises. Jeff was grabbing the lactulose and then opening his mini-fridge where he kept the Coca-Cola. He used Coca-Cola as a chaser for his nasty tasting Lactulose that he hated so much. I could hear gulping noises, then a disgusted noise followed by a desperate chugging of Coca-Cola.
After that, I heard the rattling of pills and more swallowing noises.
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