All of Jeff’s doctors assured us that he was at the top of the liver transplant list. He could get a call any day to drop everything and rush down to Umass Memorial Medical Center to be prepped for the major surgery of having someone else’s functional liver transplanted into his body to add years and years onto his life.
While we knew there was a possibility that Jeff’s liver cancer had returned, and an even more frightening reality that if his cancer had returned he would be permanently removed from the liver transplant list, we tried to push all thoughts of his mortality out of our heads.
My health was in a fragile state as well. Even though I was now on 2.5 liters of IV fluids a day, with 1.5 liters of them being infused with potassium, sugar water, vitamins, trace elements, and minerals, I was barely tolerating my tube feeds and quickly losing weight. I had never been a big girl, but since being in the nursing home I had put on some weight and gotten to the heavier side of average, now that I was no longer tolerating a rate of tube feeds higher than 10 ml an hour and that my tube feed had to be diluted with 50% water, I was only taking in about 240 calories a day through my digestive tract and any weight I had gained was starting to melt off. I was quickly getting to a point where I didn’t have much to spare.
“You’re disappearing,” Jeff kept telling me.
“Are you running the tube feeds the way you’re supposed to?” My mom kept asking.
I had to repeatedly explain to her that we had no other choice, I couldn’t tolerate a higher rate, but I knew she thought I was purposely trying to lose weight.
Just when I thought things couldn’t get any worse, Jackie told me that she needed to talk to me one morning after she finished doing all of my morning routine. I was still admiring the good job she’d done on my French braids that day.
“Sure,” I told her, “we can talk”.
I never dreamed it would be anything that bad. I’d been hit with a ton of bad news already. How could things possibly get any worse?
“I’m only 24 years old,” she began.
I just nodded, unsure where this was going.
“I need to figure out my life plan, I want to do either physical therapy or nursing, but to do either I have to go back to school and get a college degree and I really don’t think I can be a full-time student and work for you at the same time,” She explained sadly.
I felt like I was withering into a shriveled leaf. I loved Jackie, she was so kind and funny and creative and we always had a good time together when she worked. Plus she got along with Jeff well, even when he was teasing her. She understood his sense of humor. Jackie was always so sensitive to me and always knew just what to say to me to make me feel better, I couldn’t lose her now! I had just lost Nan!
Even though I kept trying to promise myself I wouldn’t cry, tears began rolling down my cheeks and I burst into hysterical sobs.
“Please don’t leave me, Jackie!” I begged her. “Can’t you just work less often?”
“I really need to put myself 100% into my schoolwork,” she explained. “I have some learning disabilities so school doesn’t come as easily for me as it does for you, I’m going to need to devote all of my time to it.”
“But I could help you with your schoolwork,” I told her.
“The next couple of weeks are going to have to be my last two weeks. I’m so sorry, this is killing me too Becca, but we can still be friends. I can still video chat with you or talk to you on the phone, we can even get together every once in a while,” she assured me.
This pacified me somewhat, but the deep feelings of loss and rejection permeated my soul for weeks after.
During Jackie’s last two weeks working for me, I poured through the PCA database online looking for a new PCA. I called maybe 30 different people and only made contact with about ten. Out of the ten, I did make contact with, I set up interviews. Only three or four people actually showed up for the interviews. One of the people who showed up was a heavy-set woman with shoulder-length blonde hair. Her name was Melody.
Melody had a gentle handshake and a gentle smile, she asked a lot of questions and actually seemed interested in my answers. She used to work at a residential treatment center for troubled children, but it ended up getting shut down by the state over some crazy conspiracies. I told her a little bit about myself and what I needed, of course, Jeff was there too, butting in with his two cents.
“She’s a lot of hard work to keep alive,” he told her. “She’s rechargeable at least and you don’t need to keep her plugged into the wall, her pumps run on 9-volt batteries. You have to learn how to set all of her pumps and charge them up for her like you charge a remote control toy car. She’s kind of like a barbie doll that you have to pick out clothes for and dress and brush her hair. She’s very smart, but doesn’t know enough common sense stuff so you got to watch out for her, and she likes things done her way or the highway, but she’s pretty awesome, she’s my best friend and she’s really tough, she can handle things I wouldn’t be handle in a million years.”
“I would love to help keep you alive,” Melody grinned at me, “I’m up for a challenge, I’d like to do more than just keep you alive, I’d like to see you thrive. If I start working for you we will do lots of awesome stuff together, we’ll go visit your parents and grandparents in Springfield, we’ll go to the park with just you, me, and Jeff to race Jeff’s remote control cars, we’ll go to the mall and go shopping at your favorite stores, we’ll do art projects together and you can teach me different art techniques, you can share your writing with me.”
As Melody told me about all of the things she planned on doing with me, my smile stretched wider and wider across my face. In the short period of time, we had spent together, she had already picked up on everything that was important to Jeff and me, and everything that we loved to do.
There’s only one thing though,” she said.
Suddenly I felt my body tense up, I knew this had sounded too good to be true. There was a catch. Nothing this good ever happened to me.
“What is it?” I asked feeling a thick lump lodging itself in the back of my throat. There was always a catch.
“I do have two nephews that I adopted as my own sons and they both have special needs as far as being emotionally and behaviorally challenged. I may need to bring them with me sometimes, would that be okay with you?”
The lump dissolved, and I could speak, this was a lot easier than I thought it was going to be. How could they be that bad? They couldn’t be much worse than Sammy.
“How old are they?” I asked guardedly.
“Max is eight and Jared is eleven,” she told me.
I felt a little better knowing that they were older and at least less likely to randomly waltz in and destroy my room toy by toy.
“Yeah, that will be fine,” I told her.
Michelle grinned at me again and I knew I had made the right choice, she just had a way of making me feel really comfortable and understood and I liked that about her, plus she seemed like she would be a whole lot of fun.
Jackie’s last day was difficult for me. She leaned down over my wheelchair and gave me a big warm hug. Her curly brown hair that smelled like Pantene fell into my face and tickled my nose, but I didn’t even care.
“We’re still going to talk on the phone a lot, and I’ll come over with Jay to check on you and make sure Melody and Lauren are doing a good job taking care of you,” she promised me.
I watched her drive off in her little blue car that Jeff always called her “Girly Girl car that no self-respecting man would ever ride in” for the last time, and couldn’t help but feel several tears stream down my face.
Melody started that night and we hit it off immediately, she had brought me a Hello Kitty soap dispenser for my bathroom and told me all sorts of crazy stories about her old job working at the residential treatment center for troubled kids. It didn’t take her long to catch on to all of the routines and to figure out how to set up my IV pumps, spike my IV bags, fill my feeding tube bags, work the feeding tube pump, and administer J tube meds, and prep IV push meds.
The first time Jared and Max were going to have to come over I was pretty nervous, especially because Melody had explained to me that they were both on a lot of psych meds and that Jared (her eleven-year-old) had recently been going in and out of the local children’s psych unit for aggressive and violent outbursts.
“So are these kids going to like attack us, or are they just going to behead more of your rubber duckie and explode your stress ball collection?” Jeff asked me after I had gotten off the phone with Michelle when she told me she was bringing the two of them over.
“I have no idea,” I told him, half-laughing at the absurdity of it all, half-terrified.
Jeff and I had mostly stopped going to the main building for meals and check-ins. Jeff hated the food so he would just buy his own food or I would buy him food, and I would just work on writing projects in my room. Jeff and I spent all of our time together either in his apartment or my apartment, only occasionally going to the main building to socialize for short periods with other residents, the aides like Cindy and Maureen, and the two cooks, Terry and Willy. Now that I was hanging out with Jeff all of the time, he had no problem carrying me up and down the stairs to get into my house. It had gotten to the point where it didn’t even feel awkward anymore.
The first afternoon Melody brought the boys over she came straight to my apartment where Jeff and I were having a very serious conversation about what superpower we would choose to have if we could have any superpower at all. The two little boys that came in with her looked totally normal. I never would have guessed that they were the little terrors that hit other kids, attacked Melody with knives, and threw temper tantrums that went on for hours and hours with no let-up.
“Hey guys,” I said.
“Hi Becca,” they said.
They had a lot of questions for me about why I couldn’t stand up by myself out of my wheelchair, why I had certain tubes, which tubes did what, and why I couldn’t eat. I answered their questions in as simple, kid-friendly ways as I possibly could without scaring them.
“My stomach is kind of like broken, it just doesn’t work right, so I have this tube in my chest that goes all the way deep inside me to give me my drinks and my medicine.” I pointed to my central line. “I have this other tube in my tummy that goes all the way deep inside me to a part of me called my small intestine to give me my food since my stomach is broken.” I pointed to my J tube. “The bag collects the drinks that I drink with my mouth.” I pointed to my G tube drainage bag, “ I like to drink through my mouth because I get thirsty and I like the sweet taste of drinks, but as soon as I drink the drinks, this tube,” I pointed to my G tube, “sucks the drinks right back out of my stomach and drains them into this bag so that I don’t get sick from drinking with a broken stomach.”
Jared and Max seemed satisfied with my explanations of all of my tubes and sat down on the bean bag chairs in my room to play their Nintendo Switches. Melody got to work taking care of me.
For the first several days of Melody working with Jared and Max coming over, everyone was happy. Jared and Max would sit in the beanbag chairs and play Nintendo Switch while Jeff and I would joke around and chill out with Melody as she crushed up all of my pills, heated up the Keurig, mixed the crushed pills with the hot water from the Keurig and the liquid meds, drew up IV meds, and pushed the mixture of crushed pills through my J tube while I pushed the IV meds through my central line at the same time.
Problems started as Jared and Max got more comfortable in my apartment. They began swearing at each other when something went wrong in their game and wrestling around on the floor to try to take the game systems from each other.
“You’re both going to be grounded and lose your video game systems for an entire week if you keep fighting like this,” Melody warned them firmly.
“But Max made me screw up in my game, he elbowed me just while I was going around the corner and it made me drive my car off the road. Now I’m going to lose my last life and it’s all his fault. He’s such a fucking loser.” Jared complained.
“If I hear that kind of language from you again, you’re going to go on a five-minute time out in the corner right here right now. I’m not playing. You don’t want to test me.” Melody told him.
Jared was breathing heavy but he didn’t say anything else, just kept digging the toe of his sneaker into my hot pink carpet.
“Hey, you can’t wreck Becca’s nice pink carpet, what’s wrong with you?” Jeff said to him.
“Nothing’s wrong with me, what’s wrong with you, loser?” Jared said spinning on Jeff.
I could see Jeff tense up and anger flash through his eyes. As sweet and kind and giving as Jeff was, he also had a quick temper and I knew I didn’t want to see him lose it on an eleven-year-old with mental health and behavioral issues. They would both just end up escalating each other.
When Jeff was about seventeen he had been riding around in the back of a pick-up truck after downing a 12 pack of Molson Ice with his buddies. He was standing up in the back, drunk, having a grand old time, when his buddy that was driving the truck went over a big huge bump. Jeff went flying out of the pick-up truck and landed on the ground, headfirst. He sustained a massive head injury.
“It felt like I was water skiing and then just falling,” is how he described it to me.
Once he stood up he was extremely dizzy. He was very nauseous but too intoxicated to register the pain. The world kept moving around on him, almost like it was going to pin him on his side. He should have gone to the hospital because he had sustained a massive brain injury, but because he was so drunk and didn’t know what other drugs might have shown up in his system, he had decided that he didn’t want to upset his mom by going to the ER. They would have had to contact her to sign him in as he was still a minor, and he wanted to avoid causing a great big deal of trouble.
Ever since then though, his behavior was different, he was quicker to anger, quicker to argue, and he would spit things out without thinking about what he was saying and how it would affect people. He had sustained a traumatic brain injury.
Flash forward over twenty years to when Jeff’s doctor told him he had two options, keep drinking and die, or quit drinking and go on the transplant list, Jeff decided to just cold turkey quit drinking. He didn’t realize that you need to slowly cut down and while his friend threw a party (he was living with that friend at the time) Jeff had a terrible grand mal seizure from detoxing withdrawals that turned into status epilepticus. His friends were so busy hiding all of their drugs that by the time they called for an ambulance, Jeff had already sustained further brain damage.
So even though Jeff was one of the smartest, most creative, sweetest, gentlest guys I knew, he was also very impulsive and got frustrated and angry very quickly and tended to react very strongly to certain situations, but this was not his fault, this was because of the brain injury.
“You can’t talk to my kid like that,” Melody yelled at Jeff.
“He didn’t mean it like that,” I tried to intervene.
“He did too,” Jared insisted.
Now I was getting frustrated with Jared myself.
“I don’t want any more comments from you,” Melody told Jared.
“Can I just talk to Jeff alone?” I asked Melody.
“Sure,” Melody agreed and stepped out dragging her two kids behind her.
“I need things to work out between me and Melody. I love Melody, so far she has been awesome for me, I can’t lose her because you can’t get along with her kids, can you just suck things up and try to tolerate her kids for the few hours she brings them when she has to bring them so that I can get care?”
“Yeah, I can do that for you I suppose,” Jeff made a big show of rolling his eyes and sighing, “Man, you are a high-maintenance friend to have.”
When Melody came back in with her two kids they went back to their video games and Jeff and Melody took a cigarette break together. I have never understood the magic of smoking, and will never pick up a cigarette in my life, especially since I am currently dependent on 3 Liters per minute of oxygen at all times, but when they came back from their cigarette break they were laughing and talking and joking together again. The rest of the evening passed peacefully, with Jared having calmed down and now sitting in his own beanbag chair across the room, playing his Nintendo Switch and Max was looking at a book on the beanbag chair near my hospital bed.
Melody would set up my tube feed bag for the night, making sure my IV pumps were set correctly and infusing at the right rates, and prep straight catheter kits and a bucket to put at the foot of my bed for the overnight when I would be alone once Jeff went home around 10 or 10:30 at night. He usually stayed until I was so sleepy from my night meds that I could barely keep my eyes open.
Once Melody had transferred me into bed and the room had emptied out and everyone, even Jeff had gone home, I was left in the quiet solitude with all of my build-a-bears, but couldn’t sleep. A big part of me was left wondering why it was so hard to find people to take care of me. Why was it so hard to find good caregivers that would stay and not have any issues? Was there something fundamentally wrong with me? Was I that bad of a person? Was there some sort of evil ingrained in me that made me not worthy of care?
I tried to push those thoughts out of my head, but no matter what they kept floating back through into my consciousness like a bad smell that you just can’t spray away no matter how much Febreeze you try to use to cover it up.