On Tuesday, Oct. 8, 2024, Becca Arielle Pava, age 35,  passed away peacefully at home due to complications from an […]

The next morning, Haley ventured out of her room for morning meds instead of waiting for Kim to come get her.  She was in shock when she returned, and the door to her room was locked.  Thinking it was a mistake, she went to find Kevin, another Mental Health Tech.

“In morning rounds staff had a discussion and decided that because you are ignoring the groups and lying in bed all day, we have to keep you out of your room.”

“That’s not fair,” argued Haley.

“We want to make sure we help you as much as we can.  Part of that is making sure you go to groups and learn better skills in dealing with problems.  Lying in bed all day is no way to deal with your issues.”

“I’m not just lying in bed in there,”  Haley told him.

“Staff do checks every fifteen minutes, they see you,” Kevin told her in a calm even voice.

“I know it looks like I’m just lying in bed, but I’m practicing mindfulness,” Haley told him, looking at his name tag because she was too moral to lie to his face.

I remember every detail of what I was doing when I got the phone call that explained a good 70% of what was currently wrong with me. By then Dr. Green, had been following me closely for over a year, but I’d spent my most of my childhood and the entirety of my adolescence growing up in hospitals. My parents ignored all the positive test results and just insisted it was all in my head.  Over and over they told me to snap out of it and just start acting like a normal teen.  They never imagined I might have a brain tumor.

About two weeks after I finished the 24-hour urine cortisol, I was sitting in a recliner next to the nursing home hospital bed my grandmother was lying in.  She was in rehab after she missed the bottom two stairs going down to the basement and fell, fracturing her femur.  I was playing with the flip sequins on my unicorn shirt.

“Are you hanging in?” I asked her.

As I hugged my daughter Destiny, I tried to get her to tell me what was wrong.  But she couldn’t get words out through her downpour of tears.  At the same time, Joanne was trying to get my attention. It took me a minute to respond to Joanne, I was feeling annoyed with her and whatever she had done to upset my child to this degree. I never imagined that she had upset her so much she would be on life support after a suicide attempt in three weeks

“What?” I finally asked Joanne once Destiny’s cries died down to sniffles and she was sucking on Blinkie, her stuffed lamb’s special blanket.

“I need to speak to you in my office.  Alone. All of this,” Joanne gestured toward Destiny and moved her hand up and down.  “Is Destiny manipulating you, and she is a master manipulator.”

Haley finished writing her ninth poem of the day and flopped down on her bed.  She stared through the barred windows and sighed.  Then she hid her pencil under her pillow.  On the Adolescent floor of Crane Hospital, patients weren’t allowed to have pens or pencils in their rooms.  The ever-creative patients might use them to hurt themselves.  Haley knew this rule.  She had broken this same rule at all the hospitals she’d been in.  She was a pro at breaking rules and getting away with it. 

This hospital was hospital number twenty-two for fifteen-year-old Haley.  She knew she was at the end of the line.   Now she was in DCF custody.  No foster home would take her.  She would be forced to live in a residential treatment center for mentally and emotionally disturbed kids. 

Residential treatment was like a horror story spoken about in hushed voices with chills running down your back to kids in psych units.  It was the end of the line and the last place she wanted to go.  Every time Haley got out of the hospital, she would promise herself that this was the last one.  But then the hallucinations would start winding her up and reality would start to crumble.

“Oh?” asked Dr. Fowler as if Haley had just told him she made toast for breakfast.

Haley drew her knees up to her chest and dropped her head into her lap.

“Who did you kill?” asked Dr. Fowler, even though he’d already read her records and knew she’d been involved in a fatal car accident and that her mother had been killed on the scene.  He knew exactly who Haley thought she’d murdered.  However, he also knew that his young patient had to express herself and get it off her chest.  The only way for him to help her see the accident was no more than an accident was to verbally and emotionally process it.

Haley had started crying again and her whole body shook with each sob.

“I don’t understand,” Dr. Fowler repeated, “Who did you kill?”

“My parents,” Haley whispered.

swung my Disney Princess sneakers back and forth hard in Joanne’s waiting room.  Blinkie, my stuffed lamb who goes everywhere with me, bounced violently on my lap.

My mom put a calming hand on my shoulder as she used the flashlight on her phone to look into my eyes.

“Are you having a focal seizure?” she asked me.  “Do you need Valium?”

A horrifying mental image of my mom gloving up, yanking down my pants and underwear, and sticking a gel pill up my butt in the middle of the waiting room flashed through my head repeatedly, like someone had pressed the “replay button” on my brain’s TV.

“No just nervous, got a lot going on in my head,” I told her.

“I know,” she smiled at me sadly. “You’re always filled with anxiety.  It must be like grand central station between those two curly red pigtails.”

“It is,” I told her, thinking about how she didn’t even know the half of it.

Haley finished writing her ninth poem of the day and flopped down on her bed.  She stared through the heavy mesh covered windows and sighed.  Then she hid her pencil under her pillow.  On the Adolescent floor of Crane Hospital, patients weren’t allowed to have pens or pencils in their rooms.  The ever-creative patients might use them to hurt themselves.  Haley knew this rule.  She had broken this same rule at all the hospitals she’d been in.  She was a pro at breaking rules and getting away with it. 

This hospital was hospital number twenty-two for fifteen-year-old Haley.  She knew she was at the end of the line.   Now she was in DCF custody.  No foster home would take her, she was too “disturbed” and “mentally unbalanced”  She would be forced to live in a residential treatment center for mentally and emotionally disturbed kids. 

Residential treatment was like a horror story spoken about in hushed voices with chills running down your back to kids in psych units.  It was the end of the line and the last place she wanted to go.  Every time Haley got out of the hospital, she would promise herself that this was the last one.  But then the hallucinations would start winding her up and reality would start to crumble.

I have created a new option for to enjoy. It’s The Newsletter Option. For a meager $6.50 a month you can receive a Newsletter from me. What will the Newsletter contain? The Newsletter will contain a free chapter of the first book of “How To Save Our Daughter”, a complete book that I am currently searching for a literary agent. To mix things up it may contain one of the first three chapters of Mindful Chapters, a book that a literary agent has picked up. It may include excerpts from my novel…

Following Dr. Green’s advice; I had been to the ER multiple times in the three-month gap between my second and third appointments. She had instructed us to go there every time the top number (systolic) of my blood pressure went over 200, or my bottom number (diastolic) went over 110.  The thing was every time I was at the ER they would order blood work and my low potassium would force them to admit me to the hospital at least overnight to get me replenished.

Because my low potassium would be critically low and because it wouldn’t respond to oral potassium, they would usually have to admit me. I would either go to the ICU, critical care step-down unit, or a telemetry unit.  That’s because potassium affects the heart and can be deadly if not immediately treated. It can cause fatal heart rhythms.  A couple of times endangering my heart.  Low potassium can be very serious if not properly addressed. It can cause fatal arrhythmias. A couple of times they caught me going into v-tach .  I would feel like there were butterflies in my throat trying to rise up and the heart monitor would start going off like crazy.  Then there would be the sounds of running footsteps and people racing into my room pulling a crash cart behind them.

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.

“You can’t purge in the dining room like that!” the counselors and nurses would tell me.  “Do you know how triggering that is for the other girls?”

At first, I didn’t even know what purging was, but in therapy groups, I learned it was forcing yourself to vomit to get rid of food you just ate so that you didn’t gain weight, or to lose weight. Then I got really confused about why the counselors and nurses said I was “purging” when I threw up, because I obviously wasn’t doing it on purpose, and I would do anything to gain weight, my body just wouldn’t cooperate.

The anxiety the meals and snacks on the eating disorder unit caused was obvious to everyone.

Dr. Hizami, my psychiatrist on the regular psychiatric unit decided I must have an anxiety disorder and put me on a medication called Klonopin, a benzodiazepine (powerful anti-anxiety/sedative medication.

I completely lost it.  Now I was officially a psychiatric patient.  It was like someone flipped the crazy switch on me and I turned into a ball of self-destructive energy, smashing my head against walls, biting my arms till they bled, and pulling out fistfuls of my own hair.

Hearing the doctor confirm that it wasn’t all in my head brought me so much relief.  But the relief didn’t last.  After getting admitted to the pediatric medical/surgical floor I went through a battery of testing. Nothing else showed up as a problem and because my parents and home care team continued to insist that I was just a psych case, the hospital finally decided that maybe there really was nothing physically wrong with me.

The final decision was that I was anorexic and would need to be transferred to the psych unit for children in a different hospital, where I would be on a unit for 5 to 11-year-olds but have meals and some groups with the eating disorder unit.

At that point I had a special feeding tube in my nose called an NG tube. It went from my nose down my throat, past my esophagus, and ended in my stomach.  The part of the tube that came out of my nose was hooked up to tubing that was connected to a bag of a liquid called tube feed that contained all the nutrition I would need in a day.  It ran on a pump that set the rate of how fast the tube feed ran in.  Until I could start eating enough calories a day to maintain my weight, I would need to have that NG tube.

My mom has been my safety net for my whole life. She just sometimes doesn’t hold my safety net in the right places. When I first got sick she didn’t know where to hold my safety net because the professionals were all insisting that there was nothing physically wrong with me. They insisted that I had an eating disorder.

Because she was holding my safety net in the wrong spot, I fell. Hard. And whacked my head on the floor of an elevator when I passed out after a routine blood test. My dad had to rush me to the ER. At the ER a doctor with a monkey fingerling named Mr. Bananas clinging to his stethoscope examined me.

My dad’s arms were wrapped firmly around me as he held me while talking to the lady at the desk at the entrance to the pediatric emergency room.  About twenty minutes earlier I had passed out in an elevator on the way out of Dr. Monroe’s office.  The vampire lady in her lab had just sucked out her usual four tubes of blood from the crook of my arm. When she was done she gave me a unicorn sticker, and I stepped into the elevator.  The next thing I remembered being aware of was my dad leaning over me yelling my name in a panic.  He had picked me up in his arms like a baby, not the ten-year-old girl I was, and carried me out to the car.  I didn’t fully wake up until we were racing down the turnpike toward the hospital.

It was March of fifth grade and I was living off sips of Gatorade. The last time I’d had any actual food was in January. My body was skeletal and looked like I’d break if I slipped and fell.  I kept asking myself, “What is wrong with me?”  I wasn’t on some sort of starvation diet because I was scared that the food would make me get fat.  However, that’s what everyone insisted the problem was. 
Dr. Monroe, my pediatrician had started that theory after finding out I was on a high-pressure gymnastics team. To her credit, Dr. Monore had done an abdominal x-ray and some initial blood work. But when her tests came back normal, I asked her “What is wrong with me?”

Jonathan (my 5-year-old brother) was struggling in kindergarten.

“I think he might be on the autism spectrum,” I heard his teacher say to my mom when we went to his classroom to pick him up. The school kicked me out after I got dizzy in class too many times. When they sent me to the nurse’s office for it, my blood pressure would be so low that they would have to call my mom to bring me home and make an emergency doctor’s appointment with Dr. Monroe
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They decided that I couldn’t go back to school until I was eating three meals a day and had a doctor’s note clearing me to return.

That day the teacher pulled my mom aside, my mom sounded angry.

“He is not, autistic” my mom glared at Jonathan’s teacher.

“He needs testing done if he ever wants to graduate kindergarten.  At the very least he has severe learning disabilities.”  The teacher told my mom, as Jonathan stared intently at a skid mark on the linoleum floor.

It was another whole year before Jonathan got the testing done.  He had to repeat kindergarten.  But again, Jonathan wasn’t in immediate danger of dying, so my issues were the ones put front and center, and all my parent’s energy was thrown into playing food police on me.

Everything started at age eight when I stopped being able to eat lunch at school. If you ask a thousand different people with gastroparesis, “What do you do when your stomach fails you?” They will give you a thousand different answers. When I was in third grade my answer was to refuse to eat lunch and snacks anymore.

Of course, this made my parents very anxious, and started them asking me a bazillion questions. I almost wanted to ask them, “What would you do when your stomach fails you?” but I knew I couldn’t talk to my parents like that.

It wasn’t until the end of third grade and the summer of my nine-year-old check-up that my parents really went on high alert. But as soon as I saw Dr. Monroe, my pediatrician, she noticed I had fallen off the growth charts for weight and then was reminded that even though I had barely turned nine I was on the highly competitive level six gymnastics team. Instead of thinking, “What do you do when your stomach fails you?” She decided to plaster me with the eating disorder label and dismiss all possible physical possibilities for my stomach failing me.

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.