Early Wednesday morning a man with mocha skin, a big white beard, and deep smile lines came to my room, room 20, in Berkshire Medical Center’s ER.
I had spent the entire night in the ER at the point. Earlier that evening I had come within seconds of overdosing on an entire bottle of Phenergan through my J tube after a horrific meeting at the assisted living, Side By Side that I lived at. On Sunday I’d been molested by a man there named John and on Tuesday I’d been forced to sit through a meeting with him where I actually had to apologize to him.
After the meeting, I fell to pieces and the only thing that had saved my life from the overdose was a messenger message that Jeff, a man from Side by Side that I was so in love with (just secretly) had sent me. In the end, I’d called crisis who had sectioned me to the ER. When I talked with the crisis woman in the ER after waiting all night, she had decided that I needed to be admitted to Jones, the local psych unit.
The man that came into my room had a wheelchair with him that had an IV pole on it. A nurse came into the room behind the man and she began hanging my IV bags and tube feeding bag and pumps on the IV pole of the wheelchair. She pulled out an oxygen tank from underneath the stretcher and hooked it up to the oxygen holder that was built right into the wheelchair then she switched my nasal cannula over to that oxygen tank.
“Are you a one assist or a two-assist?” she asked me. Meaning she wanted to know whether it took one or two people to transfer me from the bed to the wheelchair. Without my walker, I needed someone to help hold me when I transferred.
“I’m a one assist,” I told her.
She helped me into the wheelchair and then my smile-line-man began pushing me down the hall towards Jones. When we got to the first set of the locked doors I felt a lump get lodged in my throat. There was a sign on the door. It said “High Elopement Risk: Please Make Sure the Door is Closed & Locked Behind You”.
The man pushing me slid his key card into the side of the door and it opened, he pushed me through the two doors, the lump in my throat thudded further down as the doors shut behind me locking me in. Another lump settled in on top of the original one when I realized that there was a second set of double-locked doors in front of me with a second sign on it. They really didn’t want anyone escaping.
What had I gotten myself into?
The man slid his key card in and pushed me through the doors. By then my heart was racing so fast I wasn’t sure I could breathe around it, let alone speak. The unit was dark. To my left was a dimly lit nurses station with a couple of people milling around behind it. To my right was a day area with the typical plastic couches a few chairs, a TV a big table. Straight ahead of me was a long hallway with rooms coming off of it.
A man who looked to be about in his forties came out from behind the nurses’ station to greet me. He was about average height and build and had sandy-colored hair and a long nose that almost had a hook shape to it.
“Welcome to Jones,” He smiled at me. “My name is Dan, I’m going to have you get up and follow me to your room so that one of the female nurses can search you, and then I will proceed with the rest of your admission.”
“I can’t walk,” I told him.
“That wheelchair can be used as a weapon if we have it on our unit though, so you’re going to need to get out of it and follow me to your room,” he repeated.
“I have a medical condition called Autoimmune Small Fiber Autonomic Polyneuropathy that makes it so I can’t walk. I can stand and pivot if I have a walker or if I have someone hold onto me, but that’s it.” I explained. “Plus what would I do with all of my lines, pumps, and bags?” I gestured at my body and the IV pole on the wheelchair.
For the first time he looked up at the IV pole and recognition dawned on his face.
“They didn’t tell us you had medical issues,” he said.
“I would have thought they would have,” I said, half thinking aloud, but also attempting to validate what I knew he must be thinking.
“Hang on a second,” he told me.
“Umm, do you still need me here?” the transport guy with his big white beard asked Dan.
Dan just stood there for a minute looking like a deer caught in the headlights, his gaze went from me in my wheelchair to the transport guy to me to the transport guy and back to me again.
“I guess not,” he said, and then darted back behind the nurses’ station.
I just sat there in my wheelchair wondering what in the world was going to happen. Apparently, not even a psych unit wanted to deal with me.
It seemed like I was sitting in the wheelchair with Softia in my lap, wondering what the next part of my story was going to be, for forever, while I waited for Dan to re-emerge from behind the nurses’ station.
Finally Dan and a tall older woman with reddish hair in a ponytail with a thick green scrunchie, a whole lot of freckles on her slightly wrinkled face and dark green scrubs emerged.
“Hi, I’m Sherry, your nurse tonight,” the woman introduced herself. “Dan was telling me that you have some medical issues that go beyond what we were told about by crisis and your nurse in the ER.”
“I don’t know what you were told, but I do have some significant medical issues,” I told her.
“That I can tell from just looking at you,” Sherry said, “can you tell me what your main diagnoses are and a little bit about them and what kind of medical devices you have hooked up to you?”
“I have a condition called Autoimmune Small Fiber Autonomic Polyneuropathy. It is an autoimmune caused condition that causes body-wide neuropathy, hyperalgesia, and dysautonomia which is a breakdown of the unconscious nervous system. Anything in the body that the unconscious nervous system is supposed to control goes haywire with me, so I can’t eat anything because my digestive tract is paralyzed. My stomach is affected the worst with a condition called gastroparesis, so I am fed via this GJ tube I have inserted right here,”
I pointed to my upper abdomen right where my bra line is on the left side of my chest. When I shmush my shirt down you can see the tube sticking up.
“I feed through the J port,” I continued to explain, “because my stomach is pretty much completely nonfunctional. My intestines don’t work very well either, but they work better than my stomach. This drainage bag is attached to the G port and drains out all of my stomach contents like bile and the clear liquids I take sips of.” I gestured toward the drainage bag that was resting on the footrest of the wheelchair.
“Due to my dysautonomia I have very high fluid requirements, and I can’t tolerate a rate higher than 30 ml an hour of tube feed, so I also get IV fluids through my port.” I gestured toward my port in my right chest. “My kidneys can’t retain potassium, so I constantly have to have potassium going into me intravenously as one of the electrolytes in my IV fluid, I also drop my blood sugars rapidly, so I get dextrose in my IV continuously as well, and my blood pressure is always too low with my heart rate always too high so I require high amounts of saline in my fluids too. My maintenance IV fluid is D5W with 40K in NaCl0.9%. I get that 24/7.”
“The oxygen I usually only need at night, but lately I’ve been needing it at some points during the day as well. I wear it when my O2 sat drops below 92%. I have diaphragmatic weakness and atelectasis. I also use catheters because I have a neurogenic (paralyzed due to neuropathy) bladder also due to the dysautonomia. I straight cath about 7 to 8 times a day.” I explained. “Oh and I have a history of a brain tumor and a brain bleed, and seizures, hypothyroid, anemia, diabetes insipidus, and heart arrhythmias. There’s a bunch of other stuff too, but I can’t remember it all at five in the morning”
Sherry just stood there for a moment then shook her head.
“I’m impressed that you know all that stuff about your health as it is,” she said. “Well, I don’t think we’ve ever had a patient with this many medical devices and diagnoses on our unit before, but you obviously need help just as much as any other physically healthy patient so we will do our best to accommodate you.”
“Thank you,” I said, feeling a little less anxious.
“Well I’ll wheel you down to your room to do your search, in the meantime,” she paused and turned to Dan, “Dan, can you call for a sitter?” she asked him. Then she turned back to me.
“You’re going to have to have someone stay with you at all times because of your medical issues and your medical equipment,” she explained to me. “Otherwise it’s too much of a safety risk. Plus we need someone to push you around and help you and everything. Dan or I will stay with you until they send us a sitter.”
I didn’t like that term sitter, I wasn’t an infant or a child. I didn’t need a babysitter.
Sherry pushed me down the hall to a private room and then helped me into bed. Luckily the psych unit beds were also hospital beds and they had IV poles on them. Sherry hung my bags and pumps on the IV pole and helped me transfer into bed before helping me get changed into the psych unit pajamas that of course were humungous on my tiny frame. The search consisted of nothing more than her physically helping me get changed, I was relieved I didn’t have to spread my butt cheeks and cough or anything crazy like that.
Once I was in bed it was hard to fall asleep even though my body was physically exhausted. I asked Sherry if it was possible to get my night time meds after we finished going through the lengthy admission interview where I found myself dancing dangerously close to giving away the real trigger for what had made me so suicidal, but Sherry had said that since by the time we finished the interview it was 5:45 AM it was way too late for night meds.
“Just close your eyes and try to think of a relaxing place in your mind,” Sherry suggested. “Before you know it it will be morning.”
I knew that wouldn’t work, I was too busy thinking about that Section 10 and 11 Conditional Voluntary” form I’d signed that meant I had to stay here at least three days if I brought up that I wanted to leave before they were ready to discharge me, and I still might end up getting committed for up to six months if they disagreed with me that I was ready to leave. It had been a few weeks since I’d felt this trapped and out of control. I decided I needed to write. They wouldn’t give me a pen because somehow some really creative suicidal or self-harming patient could figure out how to hurt themselves with it, so they gave me a notebook and pencil and I just began freewriting.
The last time I’d felt like this was when I was told that I was being kicked out of Hillcrest Commons even though I didn’t have anywhere to go. They had told me a homeless shelter was considered a suitable discharge location, despite the fact that I’m on IV fluids continuously running on a $3000 pump, tube feeding continuously running on a pump that also cost about $3000. I’m on oxygen a good chunk of the time, I use catheters at least seven times a day and can’t empty my bladder at all without them, I have a G tube hooked up to a G tube drainage bag 24/7. I have a J tube for meds that I take every 4 hours. I’m on a whole pharmacy of meds. I would never survive longer than a day or two at a homeless shelter where they kick you out during the day too. My parents had flat-out refused to bring me home. I felt this trapped when I was at Hillcrest Commons Nursing Home and Rehab and Jillian illegally invoked my health proxy and began decreasing my IV fluids which almost killed me and would have had a hospital case manager not intervened. I felt this trapped when we had our first meeting at Hillcrest Commons and my parents first dropped the bomb on me that I would not be going home from there. I felt this trapped when my NJ tube clogged before I went to Mass General in 2014 and then no one would replace it and everyone was telling me that I was either faking or that everything was in my head and I didn’t need any more medical treatment, even though I knew I was slowly starving to death and my body was failing me in other systems as well (like my heart going into dangerous arrhythmias, my kidneys not retaining potassium and dropping to life threatening low levels my anemia getting to the point where I probably should have been transfused, my oxygen levels getting crappy). I felt this trapped when I was having an episode of SVT as a teenager and I called 911 and my dad took the phone told the operator I didn’t need medical attention, that I was just a psych patient, and hung up. I felt this trapped when I was in middle school being bullied and telling adults was just making the bullying worse and so was sticking up for myself or having my friend Miriam stick up for me. I felt this trapped when I was in the psychiatric unit when I was ten and they were locking me in the Quiet Room and tying me down to the bed and telling me to cut the crap and start behaving, and that I wouldn’t be allowed out of the restraints until I started behaving better however long that took, they had all day. I felt this trapped when I was nine and I was trying to explain to people that I wasn’t on a diet I just felt too nauseous and in pain to eat and that I could tell something physical was wrong with me, but instead everyone kept telling me I was anorexic and they made me see a therapist and learn how to swallow big pills so that I could take Prozac. I felt this trapped when…
In the middle of writing the last sentence, I finally fell asleep, it was about 6:30 AM, one of my tiny hands was clutching the pen still, the other arm was wrapped around Softia, and the notebook open in my lap.