Everyone in my family went to college, it wasn’t a question in my family of whether you would go to college, or if you would get a bachelor’s degree or an associate’s degree to start off with. It was assumed that you would at least get a Bachelors’s degree and probably a Master’s degree or a Ph.D. My dad had a Ph.D. in accounting from NYU and has written over 15 books, edited compilations of essays on business ethics that are sold all over the world, and has contributed articles to Encyclopedia Brittanica. He has been the dean of Yeshiva University’s Business School in New York City and was asked to be president of the entire university but declined because he didn’t want all that stress on his back. Currently, he is a University Professor there (which is the highest level of professor available, it’s above being a tenured professor) and researches Spirituality in Business Ethics. He lectures all over the world.
My mom has a Master’s degree in early childhood education and has written at least four children’s books. She works for a multi-millionaire philanthropist who made his money selling real estate. His name is Harold Grinspoon. and she is involved with his international project called PJ Library, which sends out a book a month to Jewish children ages 6 months to 8 years old. My mom is the one picking out the books and determining which books are developmentally appropriate for which ages, she also writes the flap covers for the books explaining how the book is connected to Judaism and activities parents can do with the children around the book. My mom also designs family programs around the books and runs Webinars for teachers about how to use the PJ library books in Jewish day schools or Hebrew schools at Jewish synagogues as learning tools.
One of my brothers has a Bachelor’s degree in personal training even though he has severe learning disabilities and my parents had to hold his hand to help him through college. He is thinking of continuing on to get a Master’s. My other brother is currently finishing up his bachelor’s degree, and getting ready to go on and get a Master’s in creative writing. All my cousins on my mom’s side have PhDs from Ivy League schools like Harvard, Yale, Cornell, Columbia, and Upenn, and work in academia. On my dad’s side of the family, all my cousins at least have bachelor’s degrees if not more.
So, when I had to drop out of nursing school back at the beginning of 2015, it was never a question in my mind of whether I would continue to get my Bachelor’s, the only question anyone in my family ever asked was what major I was switching to. It never occurred to me either that an option was just withdrawing from school completely. Despite my crippling disabilities, I knew I would continue in college, just with a different focus, even though I knew I would probably never be able to hold down a traditional job.
I ended up switching my major to writing and every day at Side By Side I would find my way to my spot in a recliner chair in front of the fireplace at the main building and pull out my laptop and work on my online classes.
In May of 2016 my hard work finally paid off, I had completed my BA in writing, and emails were coming in receiving emails about getting my cap and gown, tickets to my graduation, along with a notice that I would be graduating Summa Cumme Laude. My GPA was 3.98, and I was also being inducted into an honors society.
My bubbly excitement felt like I had swallowed mega pop rocks that were now fizzing off inside of me. If my mobility issues and disabilities hadn’t stopped me, I would have been bouncing up and down in my wheelchair with joy and elation.
“Look, Jeff!” I said delightedly.
He looked up from working on changing the motor on his favorite blue Traxxas remote control truck and came over to my laptop.
“That’s awesome!” he said.
Then I looked closer at my emails and my heart sunk. My graduation was on a Saturday.
“What’s wrong?” Jeff asked, sensing a change in my level of enthusiasm.
“I can’t go,” my voice got really quiet and I looked down at my laptop studying the keys as if they would suddenly display a solution.
“Why not?” Jeff asked
“My graduation is on a Saturday. My family are all Modern Orthodox Jews, they don’t drive on Saturdays, I have no way of getting to my own graduation.” I explained near tears, I began playing with the pink Hello Kitty comforter on my bed, twisting it and untwisting it between my fingers as I tried not to cry.
“What if your friend took you?” Jeff asked. “That crazy one that’s always talking about God?’
“Laura?” I asked.
“Yeah, her,” Jeff said.
“That’s a great idea,” I told him, suddenly the room seemed brighter. I dropped the blanket that I was twisting between my fingers and called Laura holding my breath as I waited for a response.
“Of course I’ll take you, I’d be honored to take you,” Laura replied when I asked her if she could help.
I thanked God once again that I had such a special friend in my life that was willing to go the extra mile for me.
I called my mom after that, and my mom said that she and my dad wouldn’t miss my college graduation for the world. My graduation was at the Mass Mutual Center, it certainly wasn’t next door to them, it was about a three-mile walk, but they would do the walk and meet me at the Mass Mutual Center the day of my graduation. Laura would drop me off at the spot where all of the graduates were supposed to convene and then she would go meet them so that they could all sit together and watch the graduation.
My excitement was palpable.
“Can I come too?” Jeff asked.
“I wish,” I said, but I only get three tickets and I need the first two for my parents of course, and I have to give Laura the third since she’s driving me all the way out there and everything.”
“Yeah,” Jeff sighed softly. “I get it.” The sadness in his warm hazel eyes broke my heart, but I didn’t know what else to do.
“I’ll have everyone take lots of pictures,” I promised him.
“You better,” he said.
I was so nervous on the day of my graduation.
I had Jackie wash my hair the night before and then french braid it that morning. Then Laura was running late and I was about to have a heart attack thinking that I was going to be late for my own graduation. My heart sped up, I was having a really bad stress-induced focal seizures where my eyes would bounce around, I’d blank out, and then come to with my right leg that wouldn’t stop bouncing up and down on the footrest of my pink Cadillac wheelchair, my thoughts were racing. When Laura finally arrived, I was on the verge of tears.
The Mass Mutual Center was huge. Laura had a hard time finding parking, but luckily we had my handicapped placard with us or I think we’d still be down there driving around looking for parking six years later!
When Laura wheeled me into the building and down the hall into a gigantic room where tons of students were milling around in the black and green graduation gowns with the hoods and the caps, I was suddenly acutely aware of how different I looked. Yes, I had on the same graduation gown and the same graduation cap, but I was in a hot sparkle pink wheelchair and had an IV pole sticking up from the top of my wheelchair holding a big bag of neon yellow IV fluids, an IV pump, a bag of clear IV fluid, another IV pump, a bag of off-white tube feed, and another pump. Then at the bottom of the wheelchair, I had tubing coming out between my legs and a bag of G tube drainage hanging in a black carrying bag hung between my legs on the wheelchair. I also had the end of a J tube extension peeking out through the end of my graduation gown. and light green and light brown leaf-patterned skort that I was wearing underneath the gown.
“Are you all set from here?” Laura asked me, once she had me situated in a line to sign in.
“Yeah, I should be good,” I told her, but inside I was panicking. On the one hand, I didn’t know if I was going to be strong enough to push myself all around this big huge room to get everything I needed to be done as far as signing in and getting myself to the main stage where the graduation was going to take place. On the other hand, I didn’t want to embarrass myself by asking for help and needing someone to stay with me and push me around. I felt like asking for help would make me seem weak.
“Well, I’ll be with your parents in the bleachers cheering you on then,” Laura told me, and I watched her back recede as my brain screamed at me to call her back.
I sat in the line to sign in and used my legs to push me forward. By the time I got to the front of the line my legs were like jelly and not listening to me.
“Name?” the woman at the sign-in table asked me.
“Rebecca Pava,” I told her and showed her my student ID, she checked me off on a paper and instructed me to find my place on the floor that was marked based on the letter of my last name, she told me to go to the tassel table first to get my tassels.
“You have two tassels because you are in an honors society. Your regular tassel is gold because your GPA is above 3.5. Way above actually, nice job.” She commented.
When I went to push myself away from the sign-in table my legs weren’t moving me, it was like they were made out of a liquid not a solid and they just weren’t responding. My brain began to panic but I tried to hide my panic by making my face as neutral as possible while I continued to attempt to move. I wasn’t going anywhere.
“Do you need help?” the woman at the table asked me.
“Yes,” I finally breathed out, completely mortified as the line of people waiting for their turn behind me continued to grow.
The woman stood up and walked around the table and grabbed my wheelchair, I picked up my legs and put them back on my footrests, at least they did that much, then she wheeled me over to the tassel table and parked me there.
“Here you go,” she said. She didn’t sound put off or upset that she’d had to help me, but I felt so ashamed.
At the tassel table, I received a super long green tassel for my honor society admission and a gold tassel for graduating with a super-high GPA. Then I painstakingly wheeled myself over to my spot on the floor that said it was for people whose last name started with M-R. A few people I’d known from nursing school came by to chat with me, I was so humiliated to be seen in a wheelchair with so many tubes coming out of me when they were used to seeing me at clinicals with a stethoscope around my neck taking care of patients, and being the only nursing student that could get catheters in the morbidly obese women having C-sections.
Luckily the students that I spoke to were very kind and even told me that they thought I was brave and persistent for continuing college after everything that I’d been through.
After a wait that seemed to last an eternity, one of the professors entered the room and explained that we were going to start our procession into the main auditorium. They explained how we would have to walk with the music and fill up the back seats first and then go towards the front.
“We will then hand out the programs and then Sister Mary, the president of the college will speak first. After that, the dean of students will speak, and then we will begin calling out names of students to go across the stage and get their diplomas. When you go across the stage you will shake everyone’s hands turn to look out at the audience when you accept your diploma so that friends and family can get a picture of you and then exit off the other side of the stage. Please do this as quickly and safely as possible to move things along, we have 350 of you graduating today and need to acknowledge each and every one of you for your hard work and dedication to your studies,” the professor continued to talk but I began to worry. How was I going to get up on the stage to accept my diploma? Was there a ramp? I sure hoped there was a ramp. If there was no ramp, I wouldn’t be able to get up there.
I tried to stuff my worries down, telling myself there was nothing I could do in that moment, that I would just have to keep going along and see how things played out, but I could feel my anxiety picking up like a bee buzzing away in my ear threatening to sting me and flying all around me in circles.
The procession of people lined up in their spots on the room’s floor began to move forward as a line, I put my hands on my wheels and used a combination of my hands and feet to propel my wheelchair forward. We walked for a really long time through some sort of tunnel under the building, through twists and turns, I was quickly running out of energy, I knew soon I was physically going to be unable to propel myself forward anymore. The further we traveled the slower I went. Finally, the guy behind me spoke up.
“Do you want me to just push you?” he asked.
Although I was incredibly embarrassed that I had been going so slow that I was holding everyone up and he noticed, I was quite relieved that he offered to push me and immediately told him yes. He pushed me the rest of the way into the Mass Mutual Auditorium which was jam-packed with thousands of people. They were all applauding us as we entered. A feeling of warmth, joy, and pride filled my soul, they were applauding us, they were applauding me, I had earned this.
Once we were all in our seats (I remained in my wheelchair because it was just easier that way), they passed out programs. I glanced through the program, it listed all the people that had made Summa Cumme Laude, my name was there along with 5 others. That meant 6 of us had made Summa Cumme Laude out of 450, I was in the top 6 of 450, which made me feel so good. I smiled to myself, at least I was doing something right in this crazy life of mine. I continued to look at the program, I had the third-highest GPA of everyone in the 450 people graduating that day. That made me feel so good about myself. Maybe I wasn’t a total failure after all.
These positive thoughts kept me smiling through the speeches and the first people that got called up to accept their diplomas, but then I began panicking. There was no ramp to go up to the stage to accept my diploma. They were going to call my name and then what was I going to do? I glanced around wildly searching for answers but came up blank.
They were calling out the M’s.
What if I just raised my hand and said, “sorry I can’t get up there I’m in a wheelchair and there is no way for me to get up to the stage,”? That would be so embarrassing.
They were calling out the Ns.
What if I just left the building and went to hide so I didn’t have to face all this embarrassment?
I had worked too hard on getting my degree to do that.
They were calling out the Os.
What if I just wheeled up to the stage in my wheelchair and went right up to the stairs and stopped there to see what happened.
That was probably my best bet. That was what I decided to do.
“Rebecca Pava,” They called out.
I immediately put my feet on the ground, put my hands on my wheels, and used all my strength to wheel myself over to the edge of the stage where the stairs were. Just as I got to the edge of the stairs two young men appeared at my side.
“Would you like us to carry you up the stairs and onto the stage so that you can roll across it to officially get your diploma and shake everyone’s hands and get your picture taken?” one of them asked me.
“I would love that,” I answered once my voice returned to me, I momentarily had lost it because I was so stunned by the kindness of these two strangers.
They carefully leaned down and each of them took one side of my wheelchair and lifted me into the air. Carefully leaning their weight into me so that I wouldn’t fall or be scared, they carried me up the stairs and set me down on top of the stage. The audience was on their feet cheering so loud. One of the top heads of the school held out my diploma, I accepted it and shook his hand, he smiled at me.
“More power to you. You are a true inspiration to us all,” he said, then I shook the hand of the president of the school who was sitting next to him, she also smiled warmly at me.
“May God bless you,” she said to me, “Congratulations on all your hard work! Turn around with the diploma so that your family can take your picture.”
I turned my wheelchair around, she kept hold of my hand with one hand and I held my diploma with the other, and I smiled a huge smile. It was official. I was a college graduate.
After my photo op, the two young men that had helped me pushed me the rest of the way across the stage and then carried me down the steps and made sure I was able to safely return to my seat.
Once the graduation was over, I stayed put in my seat in the audience so that my parents and Laura could find me.
“Did you hear us cheering for you?” Laura asked.
“I couldn’t hear anything, it was way too noisy, but I knew you guys were out there rooting me on,” I answered.
“We are so proud of you,” my dad said.
I felt like I was glowing hearing a compliment like that from my dad. He doesn’t always say things like that to me. I so badly want more of a relationship with him, but my illness makes it difficult. I savor any interaction with him that I can get. I do know that he does love me. He loves me more than he knows how to express. He just can’t face the facts that I have a life-threatening, life-limiting illness that he can’t fix or save me from. So he has talked himself into such a deep stage of denial that he has convinced himself that I am not actually physically ill, that I am faking or exaggerating, or imagining my medical illnesses. If I just have a mental illness, then I can physically make a full recovery and become healthy and normal again someday with the right kind of psychotherapy and put all this chronic illness stuff behind us as a distant memory. I can have a fully normal, 80 to 90 years of life. If I have a mental illness, he won’t have to face burying his own child in the not-so-distant future.
My dad loves me so intensely that his mind can’t wrap around the thought of possibly losing me to my medical conditions. So instead, his denial builds up in him to the point where he has completely convinced himself that I only suffer from mental illness and just need to work harder in therapy to learn to function with it to have a better quality of life. In that reality, there are no thoughts of me eventually going on TPN as my digestive tract completely gives out on me. There are no thoughts of my lungs deteriorating to the point where I need oxygen 24/7 and then eventually to the point where I require a trach and a ventilator. There are no thoughts of me losing the little mobility I have left or me dying before he does.
What I’ve learned is I just don’t discuss my illnesses and disabilities with him. I discuss any other topic with him and we have a loving relationship.
“Did you see that I had the third-highest GPA out of all 450 graduates?” I asked him excitedly.
“I did see that, and I’m not surprised, you and mom are the only people smart enough to really understand my writing, I’ve always known you’re extremely smart.” He said.
“I know how hard you worked for this,” my mom said, “I’m so proud of you.”
I smiled such a big, huge smile that my dry lips cracked open and drew blood.
Laura drove me over to my parent’s house where my parents had thrown me a surprise graduation party and had invited over a bunch of my friends from my old synagogue that I went to when I lived in Springfield. It was really fun and I enjoyed myself, but the people that were missing from the party were people from Sarah and Corrie’s family and that stung like a wasp’s stinger no matter how much I tried to enjoy the party.
All in all, I had a fabulous day and I even slept over at my parent’s house that night. My week got even better the Monday I got back to Side by Side.
I arrived back around 11:00 AM and Jeff was waiting outside my apartment. He was bouncing up and down with excitement.
“Are you really that excited to see my diploma?” I asked him.
“Well that too,” he said.
“Well, what is it?” I asked as my mom carried me up the stairs and put me in my wheelchair to go inside.
“I have some really good news,” he told me.
“Spit it out already,” I told him, “Stop leaving me in suspense!”
“My doctor just called me about an hour ago with the results of my latest labs and my latest MRI,” he said.
“And?” I asked
“And…. I’m cancer-free!” He announced.
“That is so awesome,” I high fived him and so did my mom,
“You have no idea how relieved I am,” I told him.
“Me too!” my mom said.
‘Oh, I knew I would beat this cancer,” Jeff said. “I’m on my 13th life, I have more lives than a cat, it takes a lot more than a little bit of cancer to do me in,” he said.
“Thank God, you beat it,” I kept saying over and over, as relief rushed throughout my body filling me up like water fills up a water balloon when you hook it up to the end of a hose.
“Now you can relax Becca, and just focus on keeping yourself alive. You’re hard work to keep alive.”
I laughed. He wasn’t wrong.
Karen, my primary care provider who was a nurse practitioner in Lee, agreed with him. She was feeling like she was doing something wrong because I was in and out of the hospital and the ER so much. In the five months that I had been under her care, I had been to the ER about 9 times for symptoms of dehydration or electrolyte imbalances, once for a psychiatric crisis (after the whole fiasco with John molesting me and then Eve swearing me to secrecy), I had actually been admitted to the hospital overnight once for that psychiatric crisis and about 4 times for electrolyte imbalances, dehydration, bowel obstructions, or related issues.
“I feel like maybe you would do better in a skilled nursing facility,” Karen said to me at an appointment in May shortly after my graduation.
As soon as she made that comment I felt panic well up inside me. I wished I could convey to her every aspect about how amazing my life was at Side By Side, how I had an awesome best friend named Jeff that I got to hang out with every day, how I had just graduated college with top honors and a GPA of 3.98, how my PCAs were awesome and we had so much fun together (doing each other’s nails, joking around while they showered me and gave me meds, going to the grocery store to pick out Gatorade and laughing about all of the funny brands of milk we saw like cashew milk, almond milk, oat milk, rice milk, coconut milk, soymilk) how I loved having my own apartment that I could decorate however I felt like and claim ownership too, how I had just gotten my first writing job. All of that alluded me at the moment though and I just felt a sudden rush of panic unload on me.
“I never ever want to go to another nursing home,” I told her in as firm a tone as I could manage. “I would have the same problems that I’m having at Side By Side anywhere I lived.”
Karen just nodded and didn’t say anything else, but I saw wheels turning in her brain and knew it wasn’t good.