Chapter 11 – New room, new therapists

After a week or so, one of the nurses came by my room and asked if I wanted to see the suite rooms, where someone would be able to stay in the room with me. Even though this didn’t mean that I would actually move to one of those rooms soon, it definitely felt just as exciting. We rolled down the hallway, passed the nurses station, and over to the opposite corner of the building where a few doors were open. I think we went into a room which would end up being only one room over from the room I would eventually be moved to. I’m not sure why, but the personal touches to the room really threw me off; a Chicago Bears fleece blanket over the foot of the bed, different hats and posters, even those “get well soon” cards in the window, all just made me feel like I was in a stranger’s house when they aren’t home. Sure, a mutual friend invited you, but still… Aside from the personal touches, the room wasn’t as dissimilar to my current room as I had expected. As you enter, the first half of the room is a fairly standard hospital room, with the hospital bed on the right and a very large bathroom with a roll in shower on the left. As you move further into the room, everything becomes brighter due to the windows lining the far wall overlooking the space between the two buildings. The space that would be used for another patient, or wheelchair storage in my case, was replaced by a carpeted area with a small table and a couch. The couch pulled out to make a bed of questionable comfort.

I was only in that first room for a couple weeks before a suite became available and I was able to transfer over. Seeing as I didn’t have a roommate in my previous room, the main difference was basically just the accommodations for other people. For reference, as a child I had pretty intense panic attacks at night associated with sleep. When they happened, I distinctly remember the image of an enormous ball of yarn rolling towards me in a pitch-black space. It wasn’t a physical threat to me, it never seemed to get closer, but was definitely coming towards me. It wasn’t an adaptation of that Indiana Jones scene either, I hadn’t seen it. I think it was a visual representation of the crescendo of the roar of silence that I experience when having a panic attack; sleep overs were not my thing. I mention this because my experience in the ICU brought me right back to those childhood nighttime panic attacks. At the core of those fears was the thought that help would not be available if/ when I needed it. In my childhood, I remember crawling along the carpeted hallway between the bedrooms, having a panic attack when everyone was already asleep, which felt oddly similar to the times that I found myself awake at night in the ICU and didn’t see anyone around. Not having to rely on those call systems relieves a significant amount of that anxiety.

Trying to get someone’s attention, even when they are already in the room, when you aren't using the speaking valve and can’t move in any significant way, is a bit tricky. Maybe whistle? Close, but you can’t pass air through your mouth. The two options I found were to either make a popping noise with my lips or, my personal go-to, make a loud knocking sound with my tongue and the roof of my mouth. I could get the knocking sound to be pretty loud, which was ideal for waking up whatever poor soul was stuck sleeping in my room. Hopefully whoever was staying in there with me was a sound sleeper because they were also subjected to the bright light from the hallway every time someone came in to turn me or draw blood.

I didn’t add many personal touches to my room aside from a couple of Japanese wall hangings which were in my old apartment. Even so, along with the small living room area, it felt a little less like a pure hospital room and maybe a bit more familiar and comfortable, just little reminders of the world outside of the hospital.

My occupational therapist and physical therapist, while I was in Craig hospital in-patient, were Janessa and Mary, respectively, and though they had very different personalities they were both exactly what I needed. Their individual personalities seemed like the perfect fit to motivate me for the specific tasks they were asking me to do. As a more extreme example, imagine if your therapist was out one day and, in their place, you got a Marine Corps drill sergeant screaming in your face. I’d imagine it to be equally as ineffective as your therapist trying to intimidate the Marines and push them to their limits, but I don’t know your therapist. My point is, their personalities perfectly matched their jobs. For me, they were the ideal motivators, able to extract everything I had to give when trying to learn a task. The major difference between the tasks for my OT and PT sessions, in my mind, boiled down to fine motor control and gross motor control, respectively.

For the OT side of things with Janessa, her soft bubbly personality made the inevitable avalanche of failure surprisingly tolerable. I found myself laughing at my complete lack of coordination while trying to relearn everything from eating and writing to cooking and cleaning. I typically really dislike unearned encouragement [it feels like they think I’m too stupid to know it is BS], but there was something about her mom-like encouragement that, while not always earned, felt natural because I was relearning child level tasks. Strangely, she had one of those ever-positive attitudes that I would usually shrink away from; but it wasn’t like her positivity was overflowing and trying to attack you, she just seemed appropriately happy at all points and her ‘neutral’ would probably be interpreted as positive. The fact that she was never phased by my failure and never had that look of pity helped normalize the failure, or more accurately normalized the amount of effort it might take to see tiny bits of progress. Through sheer disposition, she helped me to stay neutral in failure but to celebrate those little gains.

For the PT side of things with Mary, her more direct and no frills approach really helped me accurately judge how I was doing. Determining how much I was or wasn’t doing when practicing different movements was difficult without the ability to feel what was happening, so knowing that she wasn’t giving me credit for things that I wasn’t actually doing or able to do, was essential for me. It wasn’t that she wasn’t happy or positive, she just didn’t bother with that extra frill on her personality; something I found particular joy in witnessing first hand. For example, a not insignificant number of other therapists had that irking feeling that she just didn’t like them. Everyone respected her and thought highly of her, they were just also fairly intimidated. To be clear, she was never mean to anyone, it’s just that when someone isn’t trying to manage the other person's feelings, some people can find it unsettling. As a fun game, next time you talk to someone you know, try saying exactly what you would normally say but pull the emotion back and just use a flatter tone; see how they react, but also see how the experience makes you feel. How much energy are you putting into convincing people that you feel a certain way, outside of just what words you use. One small example of what she has done for me is my favorite ‘game’ from therapy. She would start by having me sit on the therapy mat with my legs out, propping my torso up with my arms. Then, I would have to raise my arms and use them and along with little head movements [I was still in a neck brace] to balance my torso and try to stay upright while she gave little pushes and pulls from behind to try to unbalance me. I probably liked it because I was good at it but refining that skill has been infinitely useful in my independence.  

In social situations my insecurity and discomfort force me to expend a significant amount of energy trying to be a “Janessa”, while deep inside, I just wish I had the confidence to be a “Mary.” Their personalities were entirely genuine, which made them both all the more endearing. I guess I was actually jealous of both and those opposing aspirations are an essential portion of the foundation of my social anxiety. Both of them were amazing throughout the process and, somehow, they were just the right type of catalyst to help speed up my recovery and really make the most of the time I had with them. I probably saw them more often and more consistently than anyone else aside from the CNAs and nurses. They were also integral in the most important decisions I had to make throughout my recovery. I think about them all the time and would love to see them but my anxiety has me convinced they don’t remember me and I don’t want to just assume they remember me and would want to talk; after-all, while they were my saviors, my heroes, I realize I was part of their job [you only have one 3rd grade teacher, they had thousands of 3rd grade students] and I wouldn’t want to assume I’m any more important than that.

Because of the variety of respiratory issues that I had, such as the pneumonia I had in the ICU, the mucus build-up in my lungs, and the tracheostomy, I would receive regular visits from the respiratory team at Craig hospital. There was a fun duality where they were the sweetest people so I was excited to see them but the things they had to do were really unpleasant so I dreaded what their presence foretold.

On the lighter side, they had me use a nebulizer to inhale vaporized medication [albuterol]. I would sit there breathing through the rigid plastic tube, listening to the light bubbling sound of the medication being vaporized. From time to time, they would have to lightly flick the container attached to the tube that contained the medication to make sure that all of it was being used. I don’t think I ever thought the treatment was all that unpleasant but I do remember the therapists always apologizing for it. There was a slightly unpleasant rotten egg sulfur smell but when you are inhaling a drug called Albuterol Sulfate, that isn’t exactly unexpected, plus, the smell or taste was never very strong. Some of the therapists joked about having trainees smell the container, only to spray it all over them, making sure that for the rest of the day they smell like an egg salad sandwich forgotten in the trunk of a Cadillac during a Mississippi summer.

On the more unpleasant side of things, there was the cough assist machine, something that would give me spikes in anxiety just seeing it rolled into the room; especially because I was well aware there was nothing that I could do to get out of what was coming. On the surface it doesn’t sound so bad, a machine that helps you cough sounds pretty useful when you have no ability to do so on your own. And if everything went perfectly and your timing was flawless it was not terrible and it was effective. It’s when things got off a little that the experience quickly spiraled downward. The machine works by providing positive air pressure during a slow timed breath in, helping you fill your lungs, think of something inflating the balloons that are your lungs. Then, the machine suddenly switches to a vacuum to help suck air and mucus out of your lungs. I knew how much time to inhale and how long the exhale would be but when I inevitably got it wrong and was still inhaling when the machine would suck the air out of my lungs like someone just punched a hole in a spaceship, all hell would break loose. At that point, instead of helping induce a single strong cough as intended, it would cause a coughing fit. However, the vacuum used to help pull air and mucus out makes it impossible to breathe in until the next cycle. Trying to get back into rhythm was pretty difficult. It wasn’t as if as soon as the machine switched back to positive pressure, I suddenly got some sort of reprieve; nah, now I was just faced with the opposite problem, with the machine trying to inflate me like a panicked and unwilling balloon. It was undeniably effective at clearing mucus from my lungs, something I was entirely incapable of on my own, but it felt like the machine was trying to kill me.

The nervous laughter from when I first saw the respiratory therapist, which was usually a cover for the fact that virtually nothing that they were saying was actually making it passed my anxiety to reach my brain, would turn to elated giggles after the fact; almost a “holy shit I’m still alive!?” kind of endorphin rush.

As a random side note, I remember talking to one of the therapists and having her describe how she was self-conscious of her looks because she had an accident requiring surgery to her face at some point in the past; but I remember being really confused because A.) She was really pretty and B.) Even after she pointed it out, I couldn’t seem to see what she was talking about, it was like, “ma’am, I have no idea what you are talking about, but if you are trying to tell me you were MORE attractive before, well that’s just ridiculous” I guess my point is, sometimes our baggage isn’t as visible to other people as it is when we look in the mirror.

During my stay at Craig, I had a lot of CNAs and nurses; honestly, too many to list individually, but they were the most important people to my mental health and daily functions. They did everything for me; they bathed me, did my bowel program, fed me, dressed me, got me in and out of bed, turned me at night to prevent pressure sores… the list is virtually endless. It all works and feels a bit backward from how you might imagine. CNAs take on the vast majority of patient requirements and have an enormous impact on your mental and physical health, despite technically requiring the fewest hours of training and specific education. Next up are the nurses who basically oversee your daily care, take care of medications, catheter changes, deal with injuries and areas of concern… generally the more technical aspects of your care. There is a fairly significant increase in the requirements to become a registered nurse (RN), licensed practical nurse (LPN), advanced practice registered nurse (APRN), etc. and many CNAs that I met were working on nursing degrees while working as CNAs. One important point is that it shouldn’t be looked at as a step up to go from CNA to nurse; while there is an increase in pay, very rarely in society does the salary truly match the value of the work. That is in no way to denigrate the time, effort, money, etc. it takes to become a nurse, it’s just to emphasize the disparity between how important the CNAs are and how little respect and compensation they receive.

This same relation exists between nurses and doctors; it’s basically a situation where the more education they go through/ the more they are paid, the less you see them and the less their perceived impact becomes. It’s difficult building that immense gratitude for and connection with doctors you rarely see when you have CNAs and nurses who you see for multiple hours each day. This failure to appreciate, in a tangible manner, everything that the nurses and CNAs is compounded by the fact that as you go down the pay scale, the employees are asked [forced] to take on ridiculous, and at times impossible, workloads; “in the next hour, please shower and dress these 5 people. Oh, and feed them breakfast, which you will have to go retrieve. Oh, and be prepared to be physically or verbally assaulted…”

I am friends with a few of the CNAs and nurses I had via social media, and I frequently think about and tell stories of others and wonder how they are doing. The thing is, I never want to bother them and almost feel arrogant thinking they will remember who I am. It goes back to the whole, you see one set of people during your stay but they see an endless stream of patients, thing. It’s not even that I would be hurt if they didn’t remember me but more that I don’t want to put them in the weird position of having to give the ole’ “oh heyyyy… you…” or “um, who are you, again?”

In any case, they were my first line of defense for everything; injuries, sores, pain, people I didn’t want to see, etc. They took over every ability that I lost, and for someone who is obsessive over small details, their work was especially impactful to my mental health, and obviously to my physical health. They also had to teach me, or really force me, to get used to instructing people on my care, something I was and still am very uncomfortable with. I don’t mind instructing someone in something that will benefit them, or really anyone but me; but as soon as I am the beneficiary of the work, the idea of telling someone to do something, makes my skin crawl. It only gets worse as things become more specific or tedious. At some point, I have to start judging how many times I can ask someone to do something exactly how I need it, making multiple adjustments along the way; or, I just say fuck it and once they are gone, exhaust myself trying to fix, undo, or redo, whatever it was I was asking them to do.

At first, I had to just shove the mass of anxiety from things not being perfect way down inside, and just deal with things as they were. It was honestly exhausting trying to accept my inability to just satisfy all of my entirely trivial compulsions; did it matter if the things on the desk were stacked in order of size, all perpendicular or parallel, with each item pushed to align one corner of all the items? No. But did I obsess over it like it was mission critical to my survival? 100% Eventually, I just started learning to do it all myself to avoid the amount of social interaction required to get the desired result. It’s not that they were incapable, well, most weren’t, it was just that they didn’t see the same benefit that I saw in spending irrational amounts of time on trivial things like, say, making the wrinkles in my pants bilaterally symmetric.

They indulged my strangest requests; before I could eat or drink, I would get really bad dry mouth and would basically beg for them to let me have ice. Given that I could aspirate the water, giving me ice involved them spoon feeding me ice, allowing me to chew the ice, and then suctioning the water out of my mouth before I inevitably got the overwhelming compulsion to swallow just a bit, which, without fail, would go directly into my lungs meaning they would then have to suction my lungs with a catheter. Despite all of this, I couldn’t begin to count how many times they sat for long periods of time going through the whole procedure, essentially just to calm my anxiety. Physically, I was fine, but something about not ingesting anything orally for all that time triggered a desperation and panic that I was not prepared to deal with. It’s also possible that I was hot and because I couldn’t sweat, it was one of the only ways I had of cooling down. They were there for me at 2 PM or 2 AM, and despite having overwhelming responsibilities, they always went above and beyond. They even made fake signs saying people had to check in at the nurse’s station before entering my room, to prevent unexpected or unwanted guests. It’s not like I had an overwhelming number of guests or even a lot of people I didn’t want to see, sometimes, it just felt like my own presence was too much social interaction for me. It was like all of the forced or necessary social interaction made me somehow need negative amounts of social interaction. I had a fair number of odd needs and requests and my nurses and CNAs didn’t blink in helping me. 

Here’s the thing, for as critical as nurses and CNAs are to the healthcare system, they are rarely compensated appropriately, especially given the insane amount of responsibility and liability forced on them. I’ll use the situation here in Colorado for simplicity and because certain aspects are particularly bad; and while the situation is better or worse in different areas, I don’t think it’s ever great.

As an example of how idiotic the current state of affairs is, the government, at the time of writing, is considering capping nurse pay, mostly targeting travel nurses, while giving 0 fucks about the ever-inflating salaries and bonuses of the administration and CEOs. I’m not sure why anyone feels that is even remotely acceptable. My only guess is that, similar to the situation with teachers, where their own good will is being held against them at the negotiation table. It’s almost as if people are saying that because you do that job, not for the money, but because you care, we’re going to need you to prove it by suffering unacceptable wages and treatment. Why should the CEO of the hospital be able to take a 7-figure salary and 6-figure bonus while you cap the nurses pay at a wage less than that of a tattoo artist… like, what!? They are a highly skilled group, putting their physical and mental wellbeing on the line to literally save lives, and should be compensated and protected accordingly.

As one traveling nurse, @Wanderrlex on Instagram, put it:

“Colorado is not unionized and we see it in our hospitals every day. As a new grad working at a level one trauma center in Denver, I rarely ever got a lunch break, was expected to care for 6 step down patients on my own if working the night shift, and was barely living paycheck to paycheck. Colorado ranks 48th, FOURTY EIGTH, in the country for nursing pay vs cost of living. Costs continue to rise and nursing pay is not keeping up at all. Last year I got threatened with termination for trying to bring my own PPE from home when our supplies were low – the doctors came into the covid units in custom ordered hazmat suits. These hospitals don’t give a f*ck about us.”

There is also the case of RaDonda Vaught, formerly a Nurse at Vanderbilt University Medical Center, who was charged with two felonies after she mistakenly dispensed the wrong medication to a patient, resulting in their death in 2017.

In response to the verdict, the American Nursing Association (ANA) and the Tennessee Nursing Association (TNA) released a statement saying:

“We are deeply distressed by this verdict and the harmful ramifications of criminalizing the honest reporting of mistakes.

Health care delivery is highly complex. It is inevitable that mistakes will happen, and systems will fail. It is completely unrealistic to think otherwise. The criminalization of medical errors is unnerving, and this verdict sets into motion a dangerous precedent. There are more effective and just mechanisms to examine errors, establish system improvements and take corrective action. The non-intentional acts of individual nurses like RaDonda Vaught should not be criminalized to ensure patient safety.

The nursing profession is already extremely short-staffed, strained and facing immense pressure – an unfortunate multi-year trend that was further exacerbated by the effects of the pandemic. This ruling will have a long-lasting negative impact on the profession.

Like many nurses who have been monitoring this case closely, we were hopeful for a different outcome. It is a sad day for all of those who are involved, and the families impacted by this tragedy.”

Additionally, the New York State Nursing Association (NYSNA) published an article explaining some of the important issues intertwined with this case, in which they said:

“The case shows how individuals are scapegoated at the expense of fixing systemic issues caused by the healthcare industry cutting corners on staffing, training, equipment, and the health and safety of workers and patients.

How many nurses saw this case and thought about their past errors or near misses? How many nurses reflected on a time when the system forced them to override faulty equipment, overlook a safety issue, take on an unsafe patient load, float to an unfamiliar area without much training, or not strictly follow a procedure because that is what hospital administrators routinely expect of them?

Nurses are under tremendous pressure every day to cut corners and “do more with less.” Although many hospitals say they promote a culture of safety, the reality is very different. Hospital policy may say that if a member of the healthcare team raises a safety concern, everything stops until the problem is addressed. In practice, nurses are too often rewarded for creative workarounds and diminished for being the squeaky wheel who notices too many problems or submits too many Protests of Assignments or Occupational Safety and Health Administration complaints.

In the RaDonda Vaught case, her hospital reported that the patient died of natural causes instead of notifying federal regulators of the medication error as required by law. Although state investigators admitted that Vanderbilt had a "heavy burden of responsibility" for the deadly error, prosecutors pursued penalties and criminal charges only against the nurse, not the hospital. Vanderbilt only took corrective action and made safety improvements after a full investigation by the Centers for Medicare & Medicaid Services.”

Essentially, nurses and CNAs are set up for failure by the hospitals in order to maximize profits and can then be held criminally responsible for mistakes, while the hospital somehow skirts all responsibility. As a final note, obviously people should be held accountable for their actions, but you always need to look at the full context surrounding the incident. You could argue that ‘good nurses don’t make those types of mistakes,’ but I would counter that good hospitals and administrations don’t push their nurses so hard that these situations are far from surprising.

The whole time I was at Craig hospital, I tried to skip showers as much as possible. They were supposed to happen every other day but I would try to bargain with my CNA to push it back a day, and most times they would begrudgingly oblige as long as I would agree to take one the next day. Of course, the next day I would either act as if I took one the previous day or try the same game as the day before. The thing is, water does a much better job of conducting heat than the air, so any time there isn’t hot water directly on you, that water is just carrying away your body heat. Also, because my temperature sense was next to useless, the water was either not warm enough or scalding. As soon as the water stopped, the “shivering” would start. I put that in quotes because instead of just shaking a bit, certain muscles pull tight but the opposing muscles don’t work so I end up curled up and twitching; similar to spiders who only have flexor muscles in their legs but no extensor muscles, except I don’t have hemolymph to extend my limbs. My wrists curl back, biceps curl my arms up, and then my shoulders raise up like I am trying to wear my shoulders as ear muffs. In my experience, even multiple warm towels, as fucking amazing as they are, weren’t enough to defeat the cold dry air. The only way to make it comfortable is to do the shower with the water as hot as tolerable with the door to the bathroom closed. That doesn’t sound so difficult until you consider the fact that there is another human in the room who does actually have the ability to generate heat internally and for them it’s like trying to work, fully clothed, inside a sauna. Add to that the fact that they probably have to do that another 4 or 5 times that night with other patients, it’s not something you want to put them through.

It was always a balancing game in my mind, on one side of the scale was my pain and discomfort and on the other was the inconvenience and discomfort of my nurse or CNA. Not showering seemed like a far better option than either being cold or asking them to be uncomfortable. There was also the constant decline of blood pressure from being in a shower chair where you can’t do weight shifts. The shower just feels like you are watching your energy slowly flow down the drain. The real fun part comes when the CNA giving you a shower has to go do something else [because they are overburdened and giving 3 other people showers] and they loop a string tied to an emergency call system around your finger and leave you to hopefully not black out or drop the string. At some point, I would always think, “huh… shit… I hope they didn’t forget about me…” which only actually happened once; she was the only CNA that I specifically asked to not have again, which seems fair, no? The blood pressure thing wasn’t unmanageable but it was just the cherry on top of the exhaustion Sunday. I should be clear that they almost never let me get away with more than two days without a shower, despite my concerted efforts to become Pig-Pen from Peanuts.