I was closing in on my first year spent at Side by Side Assisted Living at 26 years old. As bad as that sounds, it was one of the best years of my life. From my very first tour there, I knew I was going to love it, because it was such a big improvement to the nursing home I’d been living at prior, where my primary care doctor had come very close to killing me in her attempts to cure me.
Also, at Side by Side I had laid eyes on this sweet but spunky forty year old man named Jeff who by now was my life partner and had completely changed my whole outlook on life, turning it into a place I wanted to stick around for as long as possible to enjoy my time with this wonderful man.
Not only was Jeff kind, smart, creative, funny, and an out-of-the-box thinker, he had also developed a knack for saving my life.
On the morning of October 31st all of my thoughts were on going trick-or-treating for the second time in my life later that day. Melody had promised to take me along with her kids.
To kill time in the morning, Jeff pushed me down to the corner store. He got a sub and candy and soda, I got a sugar free iced tea, and then while he was transferring me back into bed I proceeded to have a Grand Mal seizure complete with hitting my head on the side rail of my bed.
Thinking fast, Jeff finished lifted my thrashing and seizing body out of the wheelchair and put me in bed where he held me until the seizure was over. When EMS arrived, I agreed to go with them to pacify Jeff who I knew must have been terrified for my very life. The hospital confirmed the Grand Mal seizure and kept me overnight for observation. By the time I made it home from the hospital the following day, Halloween was already over.
My Minnie Mouse costume hung in my closet. It never had a chance to get worn or enjoyed. Every time I looked in my closet and saw it, I felt robbed.
But you have your Jeffy, and that’s all that matters.
I kept trying to remind myself of this over and over.
Part of me felt guilty that I wanted more than I already had, but I couldn’t help it. The idea of going trick-or-treating again had excited me so much, and now it was just another item on a list of things I had lost out on in my life because of this awful illness.
Jeff saw me looking longingly at the costume.
“Want to put it on and I’ll take pictures of you wearing it so that it will be like you celebrated Halloween yesterday?” he asked me.
I shook my head no. Even though I knew Halloween was just a commercialized American holiday, and that my religion didn’t really believe in it, that seemed sacrilegious to me, I couldn’t do that.
“Well, there’s always next year,” Jeff told me hopefully.
I nodded at him with tears in my eyes. It was such a little thing, but it had meant so much to me. It had meant gaining back some of the childhood wonders that had been ripped away from me at age 8 when my autonomic SFN symptoms had begun ripping my life to shreds. Also, I had to wonder, would we both be alive a year from now? Even another week was not guaranteed to either of us.
The month of November 2016 only served to further drive my own mortality home in my head.
During the first week of the month, I started having that familiar urgency, pain with catheterizing yet only getting tiny amounts at a time because really my bladder was empty, I was just having spasms in it making me feel like I had to pee incredibly bad.
As soon as those symptoms hit, I put a call out to Dr. Sterling, my urologist, didn’t seem very impressed by my symptoms.
“It could just be bladder spasms from how often you have to catheterize yourself, we can’t just immediately jump to thinking it’s an infection every time.” He told me.
“But these are all my typical symptoms, I tried to explain to him, squeezing my phone in a death grip as I spoke and playing with the ribbon of one of my teddy bears.
“If your symptoms intensify we’ll get a urinalysis and urine culture, otherwise we’ll just know that you have some cystitis going on. In the meantime, I will write you a script for some prescription-strength Pyridium. That should help make you more comfortable whether its cystitis or an actual infection.” Dr. Sterling told me.
I hung up disgusted. This was an infection, I could immediately tell from the symptoms. He was being a jerk by not listening to me when I had been going through these UTIs for almost half my life and knew exactly how they felt in my body. Doctors who don’t listen to their patients are not quality doctors.
The Pyridium, that Melody picked up for me that afternoon and brought over as soon as she possibly could, didn’t really touch me. Pyridium had been prescribed to me so often that I think its effects just kind of petered off. All it did was stain my J tube yellow and make me incredibly nauseous to the point where I threw up a few times.
By the next day, you could see chunks of pus in my catheter bags, my urine smelled like rancid meat, and I had a full-blown fever and chills. Melody had no choice but to send me to the ER at Berkshire Medical Center. They said that we caught it just in the nick of time.
“You haven’t gone fully septic yet, but the bacteria has spread to your bloodstream. We will be admitting you to start you on IV antibiotics.”
I thanked God that they hadn’t removed that double lumen PICC line yet and stayed in the hospital about three days to get a good steady dose of antibiotics built up in my bloodstream. When they tried to switch me back over to J tube antibiotics, the infection came roaring back and I felt like my body had been put through some sort of torture chamber.
“It seems like the gastroparesis is progressing even further into total digestive tract failure,” Dr. Rose explained to me on one of his “check-in visits”. “I don’t think J tube antibiotics work on you anymore. From now on we will have to use IV antibiotics only (my other doctors would continue to insist on trying J tube antibiotics for several more years, each time having my infections progress to sepsis, before everyone was finally on the same page of the fact that my intestines would no longer absorb J tube antibiotics and that I would need my infections treated by IV antibiotics for the rest of my life).”
My antibiotics were switched back to the IV form and within a few more days I was ready to be discharged with orders to take IV Zosyn three times a day. My infusion pharmacy was going to deliver it as soon as I got home, and I would be on it for an additional seven days.
The whole time I was in the hospital Jeff visited every day, he would climb in bed with me until they kicked him out, and we would watch movies, watch TV, talk, and we would do our usual rounds with all my IV bags, tube feeding, IV antibiotics, IV electrolyte replacements, extra IV fluids, all loaded up on my wheelchair’s IV pole as we went from one of his doctor’s offices to the next where he would proudly introduce me as “his Becca”. That would always put a smile on my face. I was his Becca for life.
I had barely finished the IV antibiotics for the UTI when I started to feel really dizzy and lightheaded.
“Your lips look so dry,” Jeff kept telling me, “Do you need Chapstick?”
“I’ve been putting tons of it on,” I told him, showing him the Chapstick I carried in my purse that I kept clipped to the arm of my wheelchair.
My lips were dry though, and my mouth was salty and sticky with lots of gunk in it, even after Melody or Lauren would dip one of those spongy swabs on a stick into cold water and swab out my mouth.
It wasn’t something that I could fix by just drinking more, because anything I drank immediately drained out into my G tube drainage bag and gave me no hydration.
I figured I’d call Dr. Rose the next morning and talk to him about possibly increasing the rate of my normal saline to hydrate me more, but for some reason emergencies always happen at night when your doctors aren’t on call.
That evening, Melody had just given me a shower. After she finished rinsing off all the Dove body wash, and Loreal Elvive Shampoo and Conditioner she turned the water off, dried me off, and lifted me out of the shower and into my wheelchair where we removed the “Shower Shield” (protective plastic covering that protected my accessed port and dressing from getting wet) and reconnected me to my IV fluids and tube feeding, then she pushed me in the wheelchair out of the bathroom and down the hall towards my room.
Just as she was helping me transfer into the bed where she would dress me, a wave of dizziness so powerful hit me, that it literally knocked me off my feet. All I remember is feeling like I’d been sleeping and waking up on the floor in just a towel with Melody and Jeff staring down at me. Everything was kind of fuzzy and blurred together as my half-conscious brain attempted to put the events of the last few minutes together in my head.
“Becca?” Jeff asked. I looked over at him and forced a smile.
“You passed out,” Melody told me. “I had to lower you to the ground. There’s an ambulance on the way.”
Suddenly, I registered the fact that despite the towel that was barely wrapped around me, I was completely naked.
“Wait, you have to get me dressed,” I insisted. “They can’t come in and see me lying on the floor naked.”
“I don’t think I should really move you,” Melody hesitated. “The 911 dispatcher told me not to.”
“They always say that,” I argued.
“It’s true,” Jeff agreed. He was already heading over to my dresser to pick out clothes. Honestly, I think he had an issue with them seeing me naked as well. He was probably afraid they would fall in love with me and steal me away from him, which would never ever, in a million years happen.
“Do you like this shirt?” he asked me. Holding up a blue graphic T-shirt with different little kittens playing video games on it.
I immediately nodded, desperate to get clothes on before EMS arrived.
Then he opened the pants drawer and pulled out a blue pair of leggings with silver stars on them.
“These match. Do you like these?” he asked.
I nodded again, in too much of a hurry to notice how much his ability to pick out cute outfits had improved. Then he grabbed a purple sports bra and a pair of unicorn underwear, and he and Melody proceeded to get me dressed in record time.
Almost as soon as they had finished dressing me, we heard a knock on the door. EMS had arrived with their stair chair. It was déjà vu all over again.
This time I was only in the hospital for a couple of days. The verdict was that I had gotten severely dehydrated.
“When you drink by mouth, it signals the digestive tract to start producing bile. The more you drink, the more bile gets produced, the more you drain out into your G tube drainage bag. You need to start being very careful about how much you drink by mouth, because that’s how you dehydrate yourself.” Dr. Rose explained to me.
“Wait, what?” I asked.
“If you drink more, you produce more bile, then you drain it all out into your drainage bag and end up with less fluid in your body than you would if you hadn’t drank anything.” He explained again. “I’m not asking you to give up drinking your sugar-free clear liquids for the rest of your life, I’m just asking you to slow down on them.”
I nodded sadly.
My life was being reduced to less and less.
“Maybe we can put more swabs in drinks you like?” suggested Jeff. “Like you could put swabs in Gatorade or iced tea or Crystal Light or diet coke.”
Jeff had been lying in bed with me when Dr. Rose had come in, and Dr. Rose hadn’t chastised him for it, so he had stayed there.
“That sounds like a great idea,” encouraged Dr. Rose.
I agreed.
Maybe if the hospitalizations in the month of November had stopped there then things would have been okay, but they were followed by yet another hospitalization for low potassium due to my kidneys being unable to retain potassium (Dr. Rose added more potassium to my IV supplement bag) and then a visit for low blood pressure, followed by a visit for an uncontrollably high heart rate, where they further increased my dose of fludrocortisone and the rate of my IV hydration.
Through it all Jeff came to visit me every single day, even if it meant getting rides from Melody or Lauren, conning people into giving him rides down there, having me pay for an Uber through the app on my phone, or him digging into his own account to pay for cabs.
During the last week of November, I was actually home for the full week. This should have been something to celebrate. Jef and I should have been the happiest couple on Earth because we were finally reunited in our own home and we were both alive and the major medical issues seemed to be resolving, at least temporarily.
This was not the case.
On November 27th Melody was working. Jeff and I had been hanging out in bed playing around with my build-a-bears and his bear Oscar, and pretending that they were talking to each other.
That day Melody had to bring her two nephews, Max and Jared whom she had adopted as her own. As I’ve mentioned in past posts, these two kids could get extremely out of control to the point of being violent and needing the police and psych crisis called on them. They had both spent time on locked children’s psychiatric units, and they were both mentally very fragile. Their list of mental health diagnosis were a mile long each.
Jeff himself had a traumatic brain injury at age 17 when he fell headfirst out of a pickup truck while completely intoxicated and then didn’t get treatment. This first incident had changed his life forever. He had a second incident just several years ago when he abruptly stopped drinking.
He’d been living on a friend’s couch and his friend had thrown a party. Jeff, with his willpower of steel, did not drink a single beer at the party as he’d been told by a doctor if he didn’t stop drinking and go on the liver transplant list he would die. The problem was that no one had told him that you can’t abruptly quit drinking all on your own, so he had a grand mal seizure and went into status epilepticus for a prolonged period of time while his friends were too busy hiding all the drugs before calling 911 to get him help. Prolonged grand mal seizures deny oxygen to the brain. This is what happened to Jeff, and it caused what’s called, “an anoxic brain injury”. and since his brain injuries (which damaged mostly the frontal lobe of his brain), he had become more impulsive, quicker to anger, and much less patient.
The combination of Jeff and Max and Jared was never a good one, and Jeff was under extra stress because of all the health scares that we had just been through with me. We were both acutely aware of each other’s shortened spans of life.
When Jared started calling my teddy bears dumb and asking why we were playing with teddy bears if we were adults, Jeff turned on him full force.
“Becca’s teddy bears mean everything to her, how dare you call them dumb! Do you even know half as much as this poor girl has been through, if you did you wouldn’t even think about calling them dumb. She loves them like a mom loves her babies.” Jeff yelled at him.
Jared looked baffled for a minute before spitting back a retort.
“Then why don’t you give her real babies, or are you broken too, just like she is?”
“She is far from broken, I could kill you for saying that, I could squeeze my hands around your scrawny little neck and snap it. She is the most unbroken person I know.” Jeff screamed at him, his face turning red and vein near the top of his forehead popping out.”
I put a hand on Jeff’s shoulder, he was now sitting up, ramrod straight in the bed, poised to attack.
“He’s just a little kid, he doesn’t know what he’s saying, he’s just trying to get a rise out of you,” I tried explaining to Jeff. Although inside I was fuming at this Jared kid too.
“How dare you threaten my kid like that, I could call the cops on you for that threat,” Melody jumped in.
A knot was developing in the pit of my stomach. Out of all people, I thought Melody would be more understanding of Jeff, but she was Momma Bear and her baby’s life had just been threatened.
“How dare he call my Becca broken and make fun of her when she has just been through so much hell as it is!” Jeff shot back at her.
“He’s eleven, and he has a lot of mental health issues,” Melody told him.
“I don’t care, he can’t hurt my Becca,” Jeff insisted.
Jared was smiling a devilish grin. Jeff caught it, I caught it, Melody missed it.
“I want him out of my house,” Jeff said.
“This isn’t your house, this is Becca’s house,” Melody corrected him.
“It’s pretty much Jeff’s house too,” I told her.
“Well, what do you want to happen right now?” Melody asked me.
“I want to talk to just Jeff alone,” I told her.
Melody nodded curtly, gathered up Jared and Max, and told me to call her when I was done talking to Jeff.
After the three of them were gone and it was just Jeff and me, he lay back down on the bed next to me and gathered me in his arms. I leaned against him in the embrace and just cried.
“I’m so sorry that little brat talked to you like that,” he told me.
“It’s not just that Jeff,” I explained to him. ‘I need you to get along with my caregivers and their kids so that I can get appropriate care and don’t always have everyone leaving me. No one is going to be perfect like you want them to be. That’s because we’re all human, and no human is perfect.
“So, what do you want me to do babe?” he asked me.
“I need you to go home, cool off a little, let me talk to Melody, and then I will call you with the game plan, okay?”
Jeff seemed a little hurt, which scalded me deeper than even a burn, but I knew I also needed caregivers to survive and had to remedy this situation.
“Just please try not to say anything to them while you’re leaving, just quietly slip away. That would really be the best thing to do right now to avoid escalating the situation.”
“I love when you use big words, you’re so smart. I can’t wait to read your next book.” Jeff smiled a genuine smile at me.
For the first time in the last hour, I felt a little relieved.
Once I figured that I had given Jeff enough time to slink off, I called Melody up.
When she came back, I noticed that she was alone.
“Where are Jared and Max?” I asked.
“I had Serena pick them up so that we could have a heart-to-heart,” she explained.
Uh-oh, so far, I didn’t like the way this was going.
“I love Jeff, I think he’s a really great guy with a lot of inner strength, love, and a great sense of humor. He also obviously loves and cares about you very much, but I can’t have him treating my kids the way he does,” she began.
“He doesn’t mean it,” I jumped in trying to explain how he’d been born a preemie of only 4 pounds, had multiple learning disabilities, ADHD, probably some other undiagnosed psychiatric diagnoses, on top of his multiple brain injuries.
“It doesn’t matter if he means it or not, it’s just the fact that I can’t have him treat my kids like that no matter what.” Melody explained.
“What about all those times he’s let them play with his $400 remote control cars or brought them up to his apartment to teach them how to play the games on his $600 video game systems, or the times he’s printed out coloring pages for Max of all of his favorite Superheroes.” I reminded Melody.
“He can be really great with them too,” Melody acknowledged, “but he threatened to kill an eleven-year-old boy today, for acting like an obnoxious eleven-year-old boy.”
“What does this mean?” I asked, feeling a sense of heaviness invade my body and not knowing if I wanted to know where this was going.
“It means you need to make a decision,” Melody told me. “Either stay with Jeff and find a new PCA who can tolerate him berating their children and turning everything into a joke, or I will stay with you, but Jeff cannot ever be over here again when I work.”
For a moment I was the dog who strayed past the invisible fence and just got hit with a big shock of electricity.
Melody was the one who had played matchmaker and had put Jeff in my life as my life partner. She was the one who had, with the help of my teddy bears posing as Jeff, helped me learn how to kiss and enjoy it. It was Melody who had encouraged me to bite the bullet and let Jeff “pop my cherry”. She was forever patient with me and had saved my life multiple times. I always looked forward to having her work and laughing and smiling and chatting with her. She always appeared to get along with Jeff. My assumption had always been that they had some sort of understanding. I knew Jeff thought Melody was a good PCA for me, and that she was one of the only PCAs he had ever approved of completely, and yet here she was giving me an ultimatum.
“But you’re here over five hours some days,” I protested. “I can’t be away from Jeff for that long.”
“It’s either him or me,” she told me.
It was a no-brainer, but it was a painful no-brainer.
“I choose Jeff,” I told her simply.
I don’t know what else she expected me to say, it was plainly obvious how much in love Jeff and I were, and how there was nothing in the world that could break us apart. As we always told each other, we loved each other unconditionally and forever.
Melody nodded and picked up her Mary Poppins purse, which seemed to hold the kitchen sink, the bathroom sink, a mini-fridge, and the rest of her life. She gave me a quick nod, and without saying much else, left my apartment.
Picking up my phone, I pressed the photo of Jeff and me smiling into the camera together.
“All right Jeff,” I told him. “Coast is clear, you can come back over.”