Only those who have hit rock bottom have the capacity to experience pure joy.
Posts by Becca Pava
About Becca Pava
Becca Pava is a freelance author as well as a professional patient with a terminal illness. She has been sick since the age of eight and her condition was deemed terminal about 8 months ago, That has not slowed her down one bit,
In 2016 she graduated from Elms College Summa Cum Ladue with a BA in writing and a GPA of 3.98. and so far she has published multiple literary journal articles, and blogs online for a company called Verblio, and writes for TemplesHub, a company developing an app to increase overall wellness. she has also written two full-length young adult novels and has a third one on the way.
When not writing, Becca enjoys reading and playing with her build-a-bears, mini brands, and dollhouse.
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.
It took a few days for the fog in my head to clear.. When it finally did, I realized that I was in the ICU. Once I figure out where I was, I couldn’t remember what had happened to land me there. It took a couple more hours to piece things back together in my misty brain. I had gone from having some aching in my suprapubic area to full-blown sepsis. This had happened over the course of less than 24 hours. The day I went to the hospital, I made it halfway through the day. Then suddenly I felt like I was in Antarctica. The chills were so bad that they invaded even the marrow of my bones. In the middle of an online monopoly I terrified Jeff by passing out. He had no choice but to call 911.
Lying on a stretcher in the trauma room, I was surrounded by a mass of controlled chaos. I couldn’t believe how quickly my day had gone downhill. My body was wracked with chills, and I was unable to stop my teeth from chattering. Even though I had my Hello Kitty comforter with me.
“Can I have a heated blanket or at least another thick blanket?” I asked.
“Are you kidding?” One of the trauma room nurses asked me. “Your temperature is 105.5 and climbing, we may have to pack you with ice packs to get this fever down.
That thought horrified me. I felt like I was in Antarctica with just a bathing suit on. It felt like I had gone swimming in the frigid ocean waters in that bathing suit. Somehow the ice-cold Antarctica waters were getting inside my bones and organs.
UTIs have to be the worst kind of torture imaginable. They make you feel like you are dying when they go septic. At that point, you really are dying.
In October 2016, I woke up one morning and felt like my whole bladder was throbbing and aching. I also felt like I needed to empty my bladder. It was only 5 AM, Jeff was still sleeping at his apartment, and it was way too early for Melody or Lauren to be there. Luckily they always left a basin full of packaged clean catheters on my bedside table, and a basin to put the bags of pee that disconnected from the straight catheters as well as the used catheters there as well.
When I tried to self-cath, it burned so badly that I almost screamed and only about 25 ml came out. Ten minutes later I felt like I had to pee again. Again, only about 25 ml came out. At that point, the pain was already so bad that I felt like I was dying and I hadn’t even hit the worst of it yet.
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