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.
After my birthday and graduation, I suffered from what my dad called boredom, anxiety, or a letdown. He had a new theory every day. In my opinion, which eventually got backed up by Dr. Green a few weeks later, I suffered a worsening of my disease process.
The headaches intensified. They got so bad that I blew through my entire supply of oxycodone. Then Dr. Kaye, my adolescent medicine/pediatrician concerned by how fast I’d gone through them, wanted to hold off a couple weeks before prescribing more, so she tapered me down until I wasn’t taking any. The pain from my disease process that no one had a name for, was comparable to having a knife gouged in your head. The pain still couldn’t compare to the knife, unless said knife was on fire.
Because I was so drained all the time from my disease process, when my friends called me to invite me to the mall, movies, bowling, or to go swimming, I turned them down. Just the idea of getting out of bed was overwhelming. It was like my 80-pound body suddenly weighed 800 pounds. It required too much effort to keep my heavy eyelids open. Even talking was too difficult. My speech came out in whispers and slurred tones.
I literally slept all day. Even repositioning myself in bed took too much energy.
I have a strange relationship with my dad. He loves me unconditionally but can’t handle the fact that I’m physically ill. Even though I am sick, my dad is very proud of my intelligence. When I was homeschooling, he got me started reading books on mindfulness by Thich Nhat Hanh. Maybe it was his way of telling me that he understood I had to make the most of each moment because my moments on earth were limited, or maybe he was just being a good dad and trying to make sure I had a happy life.
Whatever my dad’s motives were for introducing me to mindfulness, I had learned that the only thing that mattered was the present moment. If there was something I was thinking about doing that I knew would make me happy, I had to make sure to do it as soon as possible. My dad and the mindfulness books both always told me not to put anything off.
My childhood was a rough ride. More of it was spent in the hospital than out. When it came time for college I had barely spent any time in high school, I had no idea what to expect. I was a shoo-in for the office for students with disabilities.
Before that, I had never really thought of myself as disabled, despite everything wrong with me. I had an NJ tube coming out of my nose to feed me where I couldn’t feed myself because of my gastroparesis. It went down my throat, past my esophagus, past my stomach, into the middle of my small intestine where it dripped in a tablespoon and a half of formula every hour.
I struggled with low blood pressure my whole life. It wouldn’t have been so bad, but I also struggled with tachycardia (too rapid heart rate) my whole life as well. The two issues combined were a recipe for hypovolemic shock. When I went into hypovolemic shock, we called it bottoming out. It was one of the reasons I was admitted to the hospital so frequently.
“Any time you know you’re bottoming out, that’s an automatic 911 call”. Dr Oster had told me.
I could always tell when I had low blood pressure and a high heart rate and was going into shock. My skin would turn bluish-gray and I would alternate between having chills and hot flashes. The world would start trying to pin me down. Exhaustion would overwhelm me along with a pull towards the darkness of the unconscious.
No matter where I was when the low blood pressure hit, I would have to call for an ambulance. If I was at home it wasn’t the biggest deal in the world, but if I was in an embarrassing place it was awful. Pretty much anywhere in public fell under the category of an embarrassing place. The more people around, the more embarrassing it was. Sometimes I would need to call an ambulance from art class. Other times I would be at the mall or the park with friends.
When I was fifteen I finally fell off the growth charts for weight. I had been teetering at the fifth percentile for a while, but at fifteen my weight dropped so low for my height that I completely fell off. Due to my gastroparesis anything I ate, I vomited back up. If I didn’t puke it up it sat in my stomach without getting digested for days, it it got digested at all. Because none of the typical treatments for gastroparesis were working it was no surprise that I was rapidly losing weight.
I had tried all the medications they made for gastroparesis, I had tried a million different diets, and I had tried meditation, but nothing worked. On and off I would have NJ tubes placed, but the NJ tube feeding gave me really bad diarrhea and I couldn’t absorb certain nutrients through my digestive tract anymore. Besides, at the beginning of the year when I was fifteen and losing weight rapidly, I didn’t have an NJ tube in.
About all I could tolerate in a day was one Pediasure and one Pedialyte.
Dr. Sampson and Dr. Kaye had a little conference about me and then Dr. Kaye called up my mom telling her she wanted me to come in for an appointment.
I lay down on the crinkly white paper on the exam table in Dr. Oster, a pediatric cardiologist’s exam room. I was now thirteen years old and Dr. Kaye, my adolescent medicine doctor was really worried about me. Apparently, my heart had been going into some abnormal heart rhythms. Dr. Oster wrapped a child-size cuff around my upper right arm and let the automatic machine inflate and deflate it. My blood pressure was 96/52 and my heart rate was 122.
Usually when I was lying down it was around the 120s, so that was pretty typical for me. Then when I sat up it would bounce up to around 135 or so. When I stood up it would hit the 150s.
I knew nothing about abnormal heart rhythms. Neither Dr. Kaye or Dr. Oster ever told me anything specific about something being wrong with my heart, but that day at Dr. Oster’s office, after he took my blood pressure and heart rate lying down, sitting up, and standing, I read it right off his face. After he left the room for a moment I looked it up on my phone. A normal heart rate for a teenager is 60 to 100 beats per minute, and it shouldn’t fluctuate like that with changes of position.
When Dr. Oster returned he told me that my heart was beating in an abnormal heart rhythm called tachycardia and he would need to run some tests on me. I was not surprised.
After I bombed at regular middle school, the partial hospitalization program was like a rescue jet to take me to safety. Originally I had gone to the local private Jewish Day School, but they had really small classes. Plus all the other kids had been together since kindergarten. I had just moved to Massachusetts so I didn’t fit into the giant clique that only left out one other girl who didn’t care because she always had her nose in a book and was oblivious to the world around her.
I had gone to most of the sixth grade but bailed toward the end of the year when I couldn’t take the bullying anymore. The partial hospitalization program probably would have been a good idea then. Instead, I went back for the beginning of seventh grade, but again, didn’t last long. My gastroparesis flared up which stressed out my parents, who, big surprise! Tried to blame it on psychological causes, even though I’d had extensive testing done at the hospital when I was ten showing that I have one of the most severe forms of gastroparesis possible.
Looking like a five-year-old and being on the autism spectrum causes big problems when you are in sixth grade. I think very concretely and have difficulty understanding other people’s emotions. My autism spectrum disorder causes a developmental delay but I have a genius-level IQ.
My interests were less in make-up and boys and more in pretend play with my kitchen set, toy cash register, mini-brand foods, stuffed animals, and other toys. Every day I carried a different stuffed animal around with me wherever I went. If I didn’t have one in my arms, I would panic.
The other kids in my class had more sophisticated senses of humor, but I still thought jokes about poop and pee were funny. At home, I would still have meltdowns and throw major temper tantrums when I got too overwhelmed and didn’t know how to regulate myself.
My entire hospital stay ended up being a total of about three months long. I went through a bunch of different phases in that hospital stay, but it all culminated in finding out the answer to the question, “What gastroparesis is”.
During phase one I was a medical patient needing medical care due to a physical illness. I remembered how relieved I had felt when I had achieved this phase.
Then there was Phase Two where I was a psychiatric patient who was experiencing treatment that was bordering on abuse by the psych unit staff. After that came Phase Three, being a surgical emergency. That’s when they raced me in the wheelchair down the hall to the CT scan machine and then pulled me out, put me on a stretcher, and ran me down to the OR.
Phase four was when I was a medical patient trying to find out what gastroparesis is.
I had been telling the nurses on the psychiatric unit that I was in severe pain and that my nausea was intensifying, for a good week and a half before I got so sick. If the nurses had listened to me or checked my vital signs more often, my bowels probably wouldn’t have perforated. But I was just a kid, and I was just a psych patient, what did I know?
The whole genre of my healthcare had changed when I first woke up, swathed in warm blankets after my emergency surgery for a bowel perforation. I had just been raced over from the children’s psychiatric unit ten hours earlier before my eight-hour surgery after one of the nurses realized that there was something seriously wrong with me.
When she took my vital signs my blood pressure was in the basement and my heart rate was dangerously high. I’d also had a fever of 105.5. Suddenly I’d felt myself being loaded into a wheelchair and raced off the psych unit and into the CT scan suite.
“They need to get a picture of the inside of your belly,” Liz had explained to me when we got to the room where they do the CT scans.
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