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.
Having Melody work for me, turned out to be the best thing in the whole world. Without Melody, i never would have even dreamed of going on a date with anyone. Because of my developmental and physical delay, I didn’t get a period or have adult hormones in my body. This meant that I didn’t feel the same attraction to boys or men that most other people my chronological age felt. But I would never grow to fully be an adult, and Melody wanted to make sure I experienced every wonderful part of life.
Sometimes when Melody came to work she had to bring her two kids, Max and Jared. They didn’t have to come with her every time, but when they did I didn’t mind. Max was eight and Jared was ten. Melody would just sit them in the beanbag chairs in my living room.
“Don’t touch anything except the beanbag chairs and your Nintendo Switches,” she would tell them.
Her thirteen-year-old daughter Serena would tag along to keep an eye on them.
“Max and Jared have a lot of mental health issues. They both have bipolar, ADHD, an attachment disorder, PTSD, and Oppositional Defiant Disorder….”
One day Jeff and I were lying in my bed playing Mad Libs. When out of the blue Jeff told me that he wanted to convert to Judaism.
“You what?” I asked shocked.
“I want to convert to Judaism,” he repeated.
“That’s like a major life-changing project,” I told him stunned.
“Whatever it takes, I will go to any lengths in the world to be with you. Your family is so important to you, and I know that. You can’t hide from me the fact that they don’t want us to be together because I’m not Jewish. The last thing I want to do is screw up anything with your relationship with your family. I want to be part of your family,” he explained.
“Well, I guess the first step would be starting to go to synagogue with me,” I told him. In the happiest state of shock possible.
Every Saturday I used the tickets my mom bought me for the handicapped bus to go to and from the all-morning synagogue service for the Sabbath. Jeff could ride with me for free as my escort.
Believe it or not, Jeff the funny clown with the potty mouth started going to synagogue with me every week. He honestly wanted to convert to Judaism and was giving it his all.
I was closing in on my first year spent at Side by Side Assisted Living. I was also only 26 years old. As bad as that sounds, it was one of the best years of my life. From my very first tour there, I knew I was going to love it there. The assisted living ad rescued me. Before moving into assisted living I’d been at a nursing home. I suffer from a disease called autonomic small-fiber neuropathy. A disease that has stolen my childhood and adolescence from me.
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