In the middle of February 2016, I spent about a week in the hospital for a bowel obstruction due to my total digestive tract failure caused by my underlying condition, “Small Fiber Autonomic Polyneuropathy”. A few weeks after I got home from my hospital stay for the bowel obstruction I decided that I needed a way to make more money.
One of my favorite things in the world was my build-a-bears. I didn’t really care that I was 25-years-old, I loved cuddling up with a teddy bear, dressing them in super cute outfits, coming up with personalities for them, making them talk to me, making them talk to each other, and even making them talk to my caregivers. What I would do was I would order them unstuffed and then I would order polyfill weighted pellets and polyfill premium stuffing off Walmart.com and I would shave off the end of a 60 ml syringe to use to funnel the weighted pellets into the unstuffed arms and legs of the build a bear and then add stuffing to the rest of the bear. Sometimes I would add scents or a heartbeat to them, and then I would use a ladder stitch to sew their backs shut. After that, I would dress the bear in either carefully selected build-a-bear clothes or carefully selected preemie-sized baby clothes. Sometimes I would buy the bear’s accessories like build-a-bear cell phones or purses, or shoes or headphones, or headbands or bows. Every day I would choose a different bear that would ride around on my lap in my wheelchair with me for the day. When I was hugging or playing with a bear I had a warm, fuzzy, fulfilled feeling in my heart that nothing else could give me.
Maybe my build-a-bears were so special to me because my body couldn’t support a period and so I would never be able to have children and the bears were like my substitute babies? I’m not really sure. All I knew, was that my bears were my world and I absolutely loved collecting them. Only thing was, they were a rather expensive hobby.
After a lot of thought about how to make money, I decided that since I was only a couple of months away from getting a BA in writing it would make the most sense to find a way to get paid for doing something that I loved and that my degree was going to be in. I was already getting some income off royalties for my book that I had published in 2009 and I had another book that I was working on trying to get published, but that would be a little while before I saw any income from that so I needed to think of something more immediate.
The idea about finding an immediate way to make more money off of my writing came to me around 10 O clock at night. The following morning as soon as I got settled into my spot at the main building, I pulled out my laptop and typed “freelance writing jobs online” into google. After a lot of time perusing through multiple websites, I finally found a website called www.verblio.com. It looked very promising. The more I studied it, the more I knew it was what I was looking for.
The way Verblio worked was you had to take a writing test and then submit a writing sample, if you passed both these tests you could work for them. They warned you that only the top 5% of people passed the writing sample. I was nervous but figured I’d give it a shot. First I took the writing test. It was a lot of straightforward grammar, spelling, word choice, and sentence structure questions, I passed easily. Then I took a test where it asked me a whole bunch of questions as it tried to make sure I knew what plagiarism was. After that, it took me to their main site where I could view all of their writing requests.
Verblio gives you content requests from different businesses and companies that want blog posts written for them by authors. The content requests say what the companies are about, give a link to their website, describe the type of blog post they want to be written, the topic, the intended tone they want the piece to be written in, intended audience, and any keywords they want to be included in the post. I picked out a post for a health and wellness website called Community Wellness and wrote my sample post about gastric emptying studies being such an important tool for testing patients with GI issues. I entitled the post “The Importance of Gastric Emptying Studies In GI Patients”.
For a couple of days, I kept checking the website with bated breath to see if I made it into the top 5% that got accepted. I kept trying to talk myself out of it, telling myself, don’t flatter yourself, you barely got started in your writing career, you don’t even have your degree yet, how can you expect to make it into the top 5% of freelance authors that get their writing accepted by Verblio.
I was so sure that I wouldn’t get my blog post accepted, that I didn’t even mention to Jeff (my best friend that I was secretly in love with, who lived at Side By Side assisted living with me) that I had submitted my writing to the site. I didn’t mention it to anyone, in fact, not even my mom. But then, three days after I submitted my writing I saw an email flash across the screen of my phone while Jeff and I were in his apartment, he had just gotten a new part for his remote control car and he was showing me how he was going to install it to make it go 50 MPH. Before Jeff got sick he had been a car mechanic, he had been the guy that did the computer systems on cars and now he used his remote control car to fulfill his need to keep his mind busy with cars. Cars and computers to Jeff were like Build-a-bears and writing to me.
As soon as I saw the email was from Verblio my heart skipped a beat, I was almost too scared to click on it.
They’re probably turning me down, I thought to myself, as I prepared for the worst. With a quivering hand, I picked up my phone. The alert to the email had gone away. I pushed on the lower button on my iPhone and had the screen pop back up. I scrolled down and clicked on my email. There it was. The email from Verblio. Taking a deep breath I pressed my finger down to open the email.
“Hi, Becca Pava,
We are happy to welcome you to our Verbio family. Your first post, “The Importance of Gastric Emptying Studies In GI Patients” is just the kind of quality writing that we are looking for in our writers. Your post has also been accepted by Community Wellness. Your next step is to fill out your bank account information so that you can receive your first payment. The instructions for linking your bank account are as follows…”
After I finished reading the email I felt like a balloon that had just been filled with helium and was about to fly away into the sky with happiness.
Jeff was so excited for me when I told him the good news.
“Now I can tell all my buddies I’m friends with a real professional author!” He smiled at me. “I told you, you were so smart, I knew you were going to get in.” He was peering over my shoulder at the email on my phone.
“I can’t believe it,” I kept saying, “I just can’t believe it,”
After my first post about the gastric emptying studies, I began posting multiple times a week. Each post got me about $10.50. Once I had been posting for a while longer the website had explained I would start unlocking the ability to write longer posts for more money. Plus businesses or companies would be able to contact me directly and request specific projects from me exclusively, offering to pay me as much as $50 for one project. This started happening as soon as a few months after I started working for Verblio because I posted so frequently.
It was the first time in my life that I’d had a real job with real income and I was so proud of myself.
If only other parts of my life were going as smoothly.
My condition was deteriorating. While I used to be able to prep my own bags of tube feed if I needed to, brush my teeth standing up, put my shirt on and off by myself, take a couple of steps across the room if I had to with my walker, I could stand up independently for shorter and shorter periods of time, my arms and hands fumbled with my clothes too much now for me to dress myself, and I could no longer walk at all, even with my walker. PT tried to work with me and I pushed my body as far as I could safely push it, doing twice-daily exercises with Nan and Jackie (my two caregivers) on days that PT didn’t come, but despite my efforts, I was losing strength and mobility week by week.
“We knew your condition was going to deteriorate,” Dr. Hurrowitz (my neurologist at Mass General Hospital and a specialist in Small Fiber Autonomic Polyneuropathy) explained to me as gently as he could when I called him in tears about how much strength I was losing. “I want to start you on IVIG, but your electrolytes are still fluctuating way too much. We need to get them more stable before that can happen. It may be time to start thinking about TPN.”
“Dr. Rose and Dr. Hussein (my kidney doctor that manages my IV fluids and my GI doctor) are dead set against TPN, they keep telling me it will make my liver fail and it well make me go septic,” I explained to him.
“Well the tube feeding is making you have bowel obstructions, it’s making you vomit, it’s making you have diarrhea, and all of that is screwing with your electrolytes which is preventing me from being able to prescribe IVIG which is pretty much the only possible treatment for your condition. If you don’t get IVIG you basically have no viable treatment options. I will have to talk to them.”
I felt really shaken up after that phone call. I needed all of my doctors on the same page and this was not working.
What also wasn’t working was that Jeff was right, I didn’t have enough PCA hours. We had to rush to get ready in the morning and at night as it was, and if I needed them at some point during the day we had to further condense the morning and evening hours to get someone there extra and that ended up being near impossible.
After a whole lot of phone calls, I finally made contact with a law firm called Disability Law Advocates. I described my situation to a lawyer named Andrew Cohen who thought I had a case.
“If we do a shower at night, that automatically eats up at least an hour of my time at night,” I explained to him. “The MassHealth people only allotted me fifteen minutes for a shower, it’s insane, it takes way longer.”
“Can you describe what the steps are that make it take so long?” Andrew asked me at our initial meeting over the phone.
“Well, first we have to disconnect both my tube feeding and my IV fluids. To disconnect my tube feeding we have to press the off button on my Inifinity pump, then physically disconnect the J port on my tube from the tubing to the pump. Then we have to draw up 30 ml of water in a 60 ml cath tip syringe, flush the water through my J port, and close up the J port.
After that we have to turn off the IV fluids and disconnect them, I put a blue line cover on the end of the tubing that connects to the pump, flush my Port-a-cath line with a 10 ml flush of saline and then a 5 ml flush of heparin and then put a green cap on the end of my Port-a-cath line. After that, we take my shirt off. We then rub a skin prep pad on my skin around the Port-a-cath.
Next, we take out a “Shower Sheild” which is a special plastic covering with adhesive around the edges. We coil up the tubing of my Port-a-cath on my chest and then place the “Shower Shield” over my Port-a-cath and dressing and press down on the adhesive part of the “Shower Sheild” so that it sticks down to my skin. The Shower Shield alone isn’t sticky enough or waterproof enough, so then we use waterproof tape and put three layers of waterproof medical tape all around the edges of the Shower Shield.
Finally, after that, I get wheeled into the bathroom and my caregiver transfers me onto my shower chair in the tub where she wraps a towel around my chest where my Shower Shield is taped down. Then she uses the handheld showerhead to wash my body and hair all the while being careful to avoid the towel-wrapped area.
Once she finishes washing me she dries me off in the shower, puts a towel around my very long wet hair, and then brushes and styles my hair before getting me off of the shower chair, and back into my wheelchair. She wheels me back into my room undoes all of the tape over my Port-a-cath and hands me an alcohol prep and saline flush so that I can wipe my line with alcohol and then flush it with a 10 ml saline flush. Then I hook back up to my IV fluids that she hands me and she flushes my J tube with 30 ml of water and I hook back up to my tube feeding,” I was almost out of breath after explaining all of that.
“Well I can certainly see that taking a lot longer than 15 minutes,” Andrew said. “What I’m going to do is I’m going to have you write that all up for me as a statement so that when we have our hearing with MassHealth we can read it to them and be like, ‘l know for your average client a shower only takes 15 minutes but Rebecca has outstanding circumstances that make it take much longer and adjustments in time allotment must be made due to these circumstances…and then we would present our statement.”
“I can do that,” I told him. “There’s other stuff too,” I explained.
“What else?” he asked.
“Well they only give us five minutes a night for taking meds, and all of my meds have to be punched out of pill cards, and there’s like 10 pills at night, 12 pills in the morning and four pills in the afternoon, then they have to crushed, mixed with hot water to get dissolved, mixed with the liquid meds and then very very slowly pushed through my J tube over like ten minutes to prevent me from vomiting them back up like I would if they all got pushed in immediately. The whole process takes like twenty minutes instead of five and if you multiply that by seven nights a week that’s a lot more time that they should be giving us.”
“I agree,” said Andrew.
We talked a while longer and when I hung up the phone I felt so relieved. Andrew felt fairly certain that he would be able to get me a significant amount of more hours.
“Told you so!” Jeff said, when I told him how well the conversation with the lawyer had gone. “Don’t you wish you had listened to me and done this three months ago?”
“Oh stop being such a big pain in the butt!” I jokingly swatted at him.
“You got to get up a lot earlier in the morning to beat me up,” he said, jumping out of the way. “Remember, I’m Muscles Harford.”
“Okay Muscles Harford,” I grinned at him.
He sat down in the nest chair in the bedroom of my room I elevated the head of my hospital bed that I was lying in.
By now he was back to coming over to my apartment as much as he wanted again.
I don’t know how he had done it, but he had gotten special permission from Eve to hang out with me there again. He really did have her wrapped around his little finger. The latest development had been that she had gotten new computers for her office. He had noticed on one of the days he stopped by to say hi to her and somehow he had convinced her to give him her old, still in pristine operating condition desktop and printer. Jeff was a smooth operator, that was for sure. So smooth that I always assumed he was always totally 100% okay with everything in his life. That’s how he always presented himself to me, I never had any reason to assume otherwise. When he told me he had an appointment coming up at Umass Memorial Medical Center in Worcester he was very nonchalant about it.
“I was just wondering if you would take the ride down there with me,” he said.
“Sure,” I immediately agreed. He never asked me for much and I always felt guilty, like I was too much on the receiving end of the friendship and not giving back enough. All I thought about his request was that Jeff figured it was a long van ride (about two hours) and wanted company. I never really thought more of it until the day we drove down.