If you’re new to this series, start here.
by Jenny Blaser
I have been here for two weeks now, and the spasms and contractions that initially ravaged my entire body have definitely begun to decrease. I can use my right hand to type and manipulate objects but my torso continues to lack muscle control and my left arm has taken to floating above my head unless restrained. It has become second nature to sit on it, lie on it, shove it under pillows, or do whatever else I need to in order to keep it under control. Due to its disembodied reality, I have decided to name my left arm “Scotty.” There is no reason for the choice of name - it just seems to fit.
My doctors have lost interest in my case. There has been clear improvement but what was once a steady but slow decrease in symptoms has now seemed to plateau. I am not changing or getting better and my pain is somewhat controlled. I still am yet to have any sort of evaluation or testing done. No MRI. No x-ray. No CT scan. Not even blood work. My IV has been out since a few days after arrival on the 12th floor. I am not getting worse, but I am not getting better. I am just existing. In a hospital.
While it feels like Guantanamo Bay to me at times – being held for no reason, and with no release date – I can understand why I am not yet home. The team has decided that I will likely need inpatient physical rehab and I am waiting for a bed in a longer term rehab facility. I cannot go home because my apartment is not accessible enough for this new level of disability. If I were to go home, I would not be able to go to the bathroom or even get into my bed. Until my symptoms dissipate or I get a rehab bed, I am stuck here.
“Good morning, Jenny! Is now an okay time? I heard about your night…” Sasha pokes her head into the room and slowly enters while rubbing hand sanitizer in. Molly follows close behind her, doing the same. Sasha and Molly are my two main contacts on my current health care team. Both always present in green hospital-issue scrubs with their hair pulled back into ponytails or buns. Their similarities end there. Sasha is a petite occupational therapist with a timid and nervous personality. Her black hair complements her molten brown eyes and thick acetate framed glasses. Molly is a young physiotherapist who is outgoing and eager to learn and begin her career here at the hospital having just recently completed her degree. Her blond highlights and side swept bangs tell me that when not wearing scrubs she probably dresses in skinny jeans and trendy tops.
“Yeah, I’m tired, but it’s fine. I would rather not sleep much today – maybe I will actually sleep through the night if I can force myself to stay up.” Sasha and Molly smile sympathetically and nod knowingly. “Have you heard back from rehab yet?”
“No, we just checked and it is still showing that they haven’t decided.” Sasha looks as disappointed as I feel. “It doesn’t normally take this long, but like I explained … you are a very unique and complex case. I think they just want to make sure they really can help you before they decide.”
I am getting really sick of hearing about how “complex” my case is. The doctors don’t want to start a new medication because I am so “complex.” They don’t know what is wrong because I am so “complex.” It was a fight to get better pain management because I am too “complex.” I can’t go to rehab because I am “complex.” This is my life! I am 23 and I don’t really care about how “complex” I am or how strange my case is because I want to move on. It has been two weeks so far and I am still in this hospital and the only reason anyone can give me is my “complexity” and I am so over it. To me this is normal and I don’t understand why no one else can see that! Why don’t these people care that I am 23 and indefinitely living here?
“What if they say no?” I ask, my frustration clearly starting to show.
“We will deal with that if and when it happens,” Molly chimes in. “How is the shoulder feeling today?”
“How long do you spend in that position?” Molly holds her arm behind her back to mirror the way I am currently laying on Scotty to hold him down and prevent flailing.
“All day. The minute Scotty is loose he just bashes off of things … I have that -” I gesture towards the padding on the side rails - “but I still manage to get bruises.” I lean forward and let Scotty free.
Molly catches my arm and begins to examine the damage. I wince as she pokes at the multiple bruises that now paint my arm in a variable rainbow of blues, browns, greens and purples. Molly holds my wrist in her right hand and with her left anchors my shoulder to the bed. She begins to gently pull my arm down and straighten it out, all the while attempting to massage my bicep and other contracted muscles. This is the one real treatment I get here and while the process is painful and I find myself cursing Molly often, it helps.
“I have been thinking about restraints,” Sasha jumps in. I am not sure if she is just trying to distract me from Molly’s work at this point. “I was thinking we could make a Velcro strap for around your wrist that we could also fasten to the arm rest on your wheelchair. We could tie it to the bed, too. What do you think? I can have something to try for tomorrow.”
“I will try anything right now! Yes!” I am very enthusiastic about this idea because I have been begging them to restrain me since I arrived. Apparently this is an odd request but I have managed to convince them that with patient consent, the use of restraints is fine. I just want something to keep Scotty under control so I don’t have to always be sitting on him.
“What happened in rounds today?” I shoot Molly a look because she is definitely starting to hurt me. She mouths “sorry” and gives me a look of compassion but changes nothing in her approach to the stretching and deep massage.
“Not much. We are just waiting to hear from rehab. You know that,” Sasha responds. Molly and Sasha attend rounds with the doctors on my team every morning. They are my key to information since the doctors never actually see me. Every day I ask them what happened and everyday the response is the same: “nothing”.
“Is neuro going to see me again? Have they talked about MRI’s? Do you know if my rheumatologist is going to see me?” I hope that more specific questions will yield better results.
“No. I don’t know of any plans for further medical follow up.” Sasha looks a bit disappointed. I am not sure if she is disappointed in me for asking again while I know the answers, or if she is disappointed in the system itself.
As Molly finishes up our daily physiotherapy ritual, I am left with less pain but also less hope. After two weeks of this I am starting to wonder if this is normal. If this had happened to someone else would the course of action be the same? Did anyone actually care that this was happening to me? Where were my doctors in all of this? I am an active, independent, and stubborn 23 year old and I am living indefinitely in an acute care hospital …
“See you tomorrow!” Molly and Sasha squirt some hand sanitizer on their hands yet again and back out of the room in a similar way to which they entered. I smile and hope they don’t notice as a tear starts to slide down my cheek.
I feel alone and abandoned. I have friends and visitors around me all the time and I love the time I get to spend with them but they aren’t who I need right now. I need doctors. I need my doctor – the one who smiled and waved at me while I was pushed onto the elevator two weeks ago to come here. The one who told me to email her and let her know what was going on. Where is she right now? Why isn’t she fighting for me? Why isn’t anyone fighting for me? Do my life and existence have no value?
I feel worthless. I feel alone. I feel like my dignity and independence have been stolen. I look down at Penny who is sleeping at the foot of the bed. She is so quiet and perfect. I call her up and bury my face in her curls. As I cry, her fluffy mop absorbs the moisture and dampens the sounds.
Jenny Blaser is a young, Deaf and Disabled Queer who loves all things pink and butterflies. She is a chronic story teller who uses narrative as an act of resistance and reclamation of identity and experience. To learn more or to reach Jenny, check out http://fiestydeafanddisabled.wordpress.com/