I can trace my descent into chronic illness all the way back to age eight. Up until then, I was actually a healthy kid. Until then there was no mention of hospitals, tube feeding, IV nutrition, terminal illness, or unrelenting pain. None of that. Back then there was no talk about me having an eating disorder.
The first sign of any issues occurred in third grade when I began suffering from frequent pounding headaches.
Another early sign of something amiss was how dry my body was. If I went a couple of hours without sipping on a drink I could put a finger in my mouth and move it around, and my entire mouth would be bone dry.
My skin began to get very dry as well, and I noticed something odd, I no longer could sweat, no matter how hot the temperature was.
Even my eyes were super dry to the point where it made my vision blurry.
My current nursing care team was only made up of two people. Laurie, my PCA, and Jackie, my nurse. However, about a week earlier, my nurse Jackie had dropped the bucket of bad news over my head. She was going back to school to become a nurse practitioner. After posting a whole lot of Facebook ads and interviewing three to four nurses, I made contact with Melody. As I tried to describe the nursing care I required in medical terms, Jeff butted in. He gave her the rundown on what I was like and how my care worked. Jeff described me as some sort of high-tech, inflatable Barbie doll toy. He explained that I needed to be hooked up to charge overnight.
Melody grinned at me, “I’m up for a challenge! I’d like to do more than just provide nursing care and keep you alive. I’d like to see you thrive. If you decide to hire me, we can do lots of awesome stuff together. We can drive down to see your parents and grandparents. Other times we can go to the park with Jeff to race remote control cars. Or we can go to the mall to shop at The Children’s Place or Justice. Sometimes we can even do art projects together. I would really love if you could share some of your writing with me!
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….”
Even though I was only twelve years old, I would then proceed to give myself all my own medications. This was not an easy feat. I had to crush all the tablets with a pill crusher. Then I had to open all the capsules and measure out all the liquids. After that, I had to mix the slurry of medication with hot water and draw it up into a syringe. Then I had to draw up a second syringe of 10 ml of water. At a slow steady rate, I had to inject the medication into the end of my NJ tube. I followed up the meds with a syringe of water. At that point, I hooked the end of my NJ tube up to the new bag of tube feed. The tube feed was all ready to go. I just had to hit start on the feeding pump. Then I put the NJ tube feed and pump into my backpack and was ready to go.
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.
After meeting with the Rabbi to go over what it will take to convert to Judaism, Jeff closes the door and turns to me. .“You are the highest maintenance girlfriend I have ever had. I am about to get naked in front of some crazy rabbi who is going to make me stick myself in the dick with a fucking blood sugar testing needle and then go skinny dipping in a collection of rainwater while singing prayers in a language I don’t know and know I will never be able to learn. Before I do that I’m going to have to sit through eight weeks of classes that I won’t be able to focus on or comprehend. The craziest thing is that I am going to do it all because I love you more than I can even express with words.
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 spotted Jeff halfway across the kitchen, and for the first time in my life learned what it felt like to have a crush on someone. We became best friends during my first six months at Side by Side. The more I got to. know him, the more I knew that he was the man for me. When we finally began dating he even decided to go so far as to convert to Judaism for me so that my family would accept him. I loved him unconditionally but at one point we thought he had a death sentence.
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