In previous entries, I was diagnosed with a brain tumor and had it removed through brain surgery. During the 13 hour operation I was resuscitated three times, which means I also died three times very briefly. During that time I believe I was offered a choice, and I chose to live. Not because I was afraid of death, or because it was painful, but because I had things left to do. I love my fiancee, I wanted to fulfill my promise to marry her and be with her, and I wanted to know what our life together would be like. After I decided I’d rather have a painful, tough, struggle-filled life than an easy, quiet death, I woke up.
Memory is a funny thing. I’ve been thinking about my time in the ICU for a week now, and I can still only recall brief snippets of specific experiences. Still, even though the events are a blur, the sensation is still very familiar to me. The fear, the pain, the uncertainty, the monotony, the routine, are all very easy to recall. Specific people, places and events are tougher to bring to mind. But still I try, because I want to remember. As unpleasant as it was, it was an experience, a lesson, and I don’t want to ever forget it. So if this comes across as a chaotic jumble or seems disconnected, that’s because it is. Try as I might, it’s hard to tame that beast into a coherent narrative.
In the bland language of medical science, I spent about 12 days in the ICU and three days on the hospital floor before being moved to a longer term, inpatient rehab facility across town. I then spent about 19 days in inpatient rehab before leaving the hospital and spending several months more in active outpatient rehab. Eventually, I transitioned back to work and life. While in the ICU I was intubated (placed on a breathing tube) and put on a respirator two times, on supplemental oxygen for several weeks, treated for a pulmonary embolism (a small blood clot that migrated to my lungs), placed on a feeding tube and had a tracheostomy inserted into my throat, along with being on almost constant pain medication and being treated for regular panic attacks. My blood pressure shot up dangerously high and my oxygen saturation dipped dangerously low at several points, requiring additional medical intervention, and for nearly two weeks I didn’t poop. You wouldn’t think the last one would rank with the others, but this turned out to be very important.
Before the surgery, my niece (who is ridiculously cute, and I’m not just saying that as her uncle) gave me a small stuffed animal and a get well soon card. He was called Mr. Squiggles, and he stayed with me throughout my experiences in the ICU. I don’t precisely know why he was as great a comfort as he was nor why I chose to have some of the affirmations and mantras that I did (more on that in a minute), but he was and I did. When picturing what I’m about to tell you, though, know that he is a 1 foot tall stuffed brown monkey. He has a tag, and on it my cousin wrote her own name in the “From” field and “Uncle Luke” in the To field. He is beside my computer to this day.
Despite the last line in the previous entry, there wasn’t really a clear point at which I “woke up” from my surgery. Instead, my third dream (of spinning fast and being bombarded by noise) simply seemed to stretch on and gain new focus, transitioning so gradually from dream to reality that even now I couldn’t tell you where the transition happened. However, at one point I realized that I was no longer sitting on a therapist’s couch spinning (which is where I thought I was initially in the dream), and was instead on a large, reasonably comfortable bed in a somewhat dark room with an old TV turned onto Maury Povich, and had been there for some time. I had an IV in my right arm and in my left arm, an oxygen mask on my face, a catheter to catch my urine, and there was a nurse doing something. She motioned to my waiting family members, who came in and said hi.
They told me it had been three days since the surgery, when I asked. My mother and my wife told me later that I had been talking to them before that point, but I honestly don’t remember any of that. I guess the cranial swelling does a number on things like memories, even if things seem fine. But I was talking to them then. I remember the first few days as being full of periodic pain and growing weakness, like my strength and energy was being sapped away by something to the point that even moving was a serious challenge.
On the third night, the pain started. It wasn’t that bad the previous two nights (although certainly present in some measure), but it got much worse on the third night. When it got worse I called a nurse and told them about it, that my chest hurt and it was getting worse. Then I told them again, because it got worse. Then I told them again, because it got worse. Then I told them again, because it got worse. Then they told me the doctor had gone home and couldn’t prescribe any more pain meds, and that I’d have to wait for the morning. I was on the maximum dose of Dilaudid they were allowed to give me at that point, and had also given me a couple other meds I can’t remember. They also wanted to get an ultrasound of my chest to see what was going on, and for an odd reason that might also offer relief of my pain, but that would have to wait for morning too. I nodded and said okay. When they left, I sobbed. I’m a pretty stoic guy, and it takes a lot to make me cry, but that news just took the last wind out of my sails, took away my last hope of relief in that solid, concrete pronouncement.
I spent the next six hours in undiluted, unabated, unabashed agony all by myself in that dark, quiet room. Every breath was agony because the blood clot was in my lungs, it felt like a staple in my chest holding the two sides of my lungs together. I spent the time trying to breathe slow and deep, because even though it felt that way I knew that pushing past the pain would help. What I really wanted to do was stop breathing altogether to make the pain stop. I tried shallow breaths a few times, but that made my oxygen saturation drop so I avoided that after a while. When I found a pattern that worked, I kept it. Thereafter, I spent my time rubbing my thumb back and forth on the tag on Mr. Squiggles and repeating the words on it to myself over and over again. There aren’t any words on that tag any more; I’ve rubbed them all away. It felt like the pain was so intense it was literally going to wash away my sense of self, take my identity and sanity away from me. I needed a constant reminder of where I was, who I was, and what I was fighting for. When just that didn’t suffice, I whispered to myself, “I love you, Laura.” She always gave me great comfort, was my anchor and my foundation, and that hasn’t changed a bit. Even though she wasn’t there just then, she helped.
In the morning, after their daily pow-wow, the doctors decided I needed to go on a ventilator. My blood wasn’t oxygenated enough on its own, try as I might to breathe deeply and fully, and I needed the additional support that being intubated and placed on a respirator would provide. They didn’t ever tell me that, though. What they told me was “sit up.” and whenever I inquired what some drug or procedure was it was always “your medication” or “this will help you sleep.”
And so it was that a few hours (or a few days, I don’t even remember) after they placed me on a respirator and breathing tube, I removed it and started to remove my own IVs. I stopped when I got to my catheter, because I lost my courage when I started to pull the rubber tube out of my urethra. That hurts a lot, by the way. Alarms went off, nurses ran in and held me down, then a respiratory therapist re-inserted the tube I’d removed. They placed me in restraints, also, but they didn’t do a very good job (protip: don’t put the quick release to a slipknot within reach of the person you’re supposed to be restraining), so about two hours later they came in to change my medication to find me stroking Mr. Squiggles, my hands unbound. They tied them up again, and I demonstrated that I was entirely capable of slipping the restraints again. That battle went on like that. Later that day, Laura and my parents visited. Laura asked what happened. I used a pointer and an alphabet board to indicate my answer, because I couldn’t speak. My responses were significantly less sensible than this, but for ease of reading I’m going to keep my responses to what I intended to say rather than what I did say. I was on pretty heavy sedation at that point, so it was hard for me to coherently express myself.
“Why did you extubate yourself?” Laura said
“If they asked first, would you have let them?”
“So if I get them to ask you for permission first and tell you what they’re doing to you, you promise not to try that again?”
“What about your medications?”
“Okay, I’ll talk to them about that.”
After that point, when they answered my questions and treated me like the learned, educated guy that I am, I was very well behaved. You see, I’m a bit weird. When a person orders me to do something, they’d better have the authority and leverage to back that order up, because if I can then I will rebel. Even, perhaps especially, if the order was to do something I was already inclined to do. If I’m asked, though, I’m on the other hand much more cooperative. So, it was in the best interest of the nursing staff to ask me if it was alright that they do this, that or the other, rather than simply tell me that they were doing those things to me. I understand that they are pressed for time, and that that is nto really how they were used to things working, but it’s my body and I will assert ownership if I have to.
In the end, though, it was probably a bad decision. It’s entirely probable that many of the problems I had later with vocal cord paralysis came at least in part from extubating myself like that, and so it caused one of the most unpleasant parts of my longer-term arc of recovery. At the moment, though, it was what I had to do in order to get a little bit (or maybe just the semblance) of control over my own life. I hated and hate being treated like a piece of furniture, or like a person incapable of understanding what was happening to him or making informed decisions for himself, and the ICU nurses started out treating me like a mix of that. It wasn’t their fault, though; most of the time, that’s the safest assumption for the patients they are dealing with. It’s better to be wrong in the right direction, after all.
The days after that pretty well blended into one another. My room was lit almost identically regardless of whether it was day or night, and I was on pretty much constant sedation so it was hard to tell time. There was a clock, but a few problems conspired to make it very hard to read. First, there was the sedation. Propofol, which is the anesthetic I was placed on pretty much constantly, is called “milk of amnesia” for a reason. So I could be aware of my surroundings and reasonably clear-headed one minute, and then completely asleep or otherwise out of it the next. Therefore, if I did successfully read the time off the wall, there’s really no way of knowing how long that reading would be relevant, as at any time I might skip ahead an hour or two without even knowing it. Second, there was my vision. That requires a bit of explanation.
The tumor was growing on my right acoustic nerve. As previously stated, it was about 4 cm on the large axis, which was along the nerve itself, and about 2 cm in each direction extending out from the nerve. It turns out that the optic nerve, oculomotor nerve, trochlear, vestibulocochlear, facial, and trigeminal nerves, and a couple others are normally about 1 cm away from the acoustic nerve inside a bundle of nerves within the brain in a region called the Pons. That means that the tumor was growing and displacing them, too. It hadn’t grown around them, but it had forced them out of place and they were running along its surface, making the surgery to remove it somewhat more complex. When they did remove it from my acoustic nerve, that nerve was so stretched by the tumor and the surgery that it was pretty much useless. A few other nerves sustained some damage too. This nerve damage manifested as my balance being completely off and my feeling like I was spinning when I was standing still, my right eye not being able to move past a certain point, my right eye not seeing nearly as well or protecting itself with tears nearly as well as it normally did, the right half of my face having almost no sensation and no motion whatsoever, and my being unable to swallow or speak at all. This last may also have been caused by swelling that resulted from me extubating myself earlier, also, but the degree to which those two events contributed to my observed outcome is pretty much impossible to assess.
I’m right-handed, and therefore right-eyed. My vision in my right eye went from 20/20 to approximately 20/200, and I was unable to move my right eye farther to the right than staring straight ahead. Also, my right eye was tilted a degree or three off from true, so that I had (have) no depth perception and I have persistent double vision. All of that made it nearly impossible to read a clock on the wall. I eventually figured out that my vision got substantially better if I closed my right eye. My parents buying and placing an eye patch on me for that purpose also helped.
After a few days, the doctors started to take an interest in this. It turns out that after the surgery my eye got so dry and was rubbed on by a piece of gauze they placed to hold it shut, so that I developed an ocular ulcer on my eye and had to have it stitched shut. They placed a temporary tarsorophy on my eye in order to do that, which basically consisted of a plastic bar they wove both of my eyelids onto, in order to semi-permanently close them both around said bar and avoid having anything touch my eye for a while. I remember the operation to install the tarsorophy very vividly, because it scared the crap out of me.
In order to perform the operation, they injected some demerol into my face to numb it. I was already on Dilaudid and Propofol at that point. That meant that my body, which was already in a dreamy, disconnected state to keep me separate from the pain, started to numb even more. To me, being on Dilaudid felt like I had two bodies. There was the meatbody, which hurt a LOT and was just kind of sitting in the corner at the moment. Then there was the mindbody, which is where I really was, and was just a passive observer for all of this. If I wanted to communicate with the world I needed to do it through my meatbody, and that required feeling all of its pains and problems and engaging the thing I was trying hard at that moment to ignore. Well, you would expect demerol to only affect my meatbody. That’s not what happened, though. I felt the numbness and vacancy spread over my head in my mindbody, felt it regardless of whether I wanted to feel it or not. That scared me, because numbness felt like oblivion, and it felt like the next thing that was going to go numb would be my brain itself. I’d be gone if that happened, I feared. All the hard work I was doing to preserve my consciousness and personality would be for naught if the drug took away who I was, if I was so lost in the fog of anesthesia that I couldn’t find my way back.
I was so scared that I asked my brother if there was some sort of interaction between Dilaudid and Demerol that I should worry about. There wasn’t of course, because the docs know what they are doing and were monitoring me closely, but I still had to check. After about an hour it started to get better. About four hours later the Dilaudid started to wear off, and at that moment I made a decision. The painkillers were a necessary tool, but when overused they were dangerous. Not only were they addictive, but they also had the same power to cause me to lose myself that the pain did, if used overmuch or improperly. I also wanted to genuinely feel the pain, because this was my life and I wanted to live it, even the bad parts. The more I felt, the more I learned. Of course, I could only take so much pain, so I didn’t refuse all medication, but I decided at that point to absolutely minimize the painkillers I was on. Pain can’t kill you, after all, so completely eliminating it wasn’t necessary or helpful.
That night, an ironic and troubling thing happened. The night nurse on duty was a young man whose name I forget. He was a big fan of peace and quiet, of his patients sleeping the night away and not bothering him overmuch. I, however, was spending the night trying to find the right setpoint to minimize my painkiller use. That meant that I gave up on sleeping that night. This bothered him. Therefore, whenever I asked for something that night, the answer to the question of what I wanted was always “more medication.” Since I was asking through a really problematic letter tablet, and wasn’t able to point out letters in an accurate or swift manner, I can’t entirely blame him. Usually when patients complain, they complain about pain. Usually they just want more painkillers. Also, most patients want to sleep at night, and I usually tried, but that night was different. Still, when I meant to ask for a new blanket, I got Dilaudid. When I wanted him to retrieve my letter tablet because I could not, I got another painkiller. When Mr. Squiggles fell off my bed and I couldn’t get him without disconnecting my IVs, I asked him to pick up my stuffed monkey for me. I got another painkiller, that he told me was actually prescribed for someone else but “it was okay.” After that, I learned to just not call for help. I laid back in my mindless haze and tried to meditate through it, to maintain my sanity and my Self through the disconnecting, disconcerting haze of all the chemicals.
In the morning, one of my favorite nurses came on duty. Since I was pretty sure what had just happened was against regulations and laws and good practice, I tried to tell him about it. After ten minutes of trying to explain using the letter tablet and getting nowhere, then having a different patient call him, I just gave up. It wasn’t that big of a deal in all probability, and it was just something I’d have to remember to not let happen again.
That day, I started to turn a corner. For the previous week, I had been given no food whatsoever. Predictably, that caused me to lose a lot of weight. When I went into the OR I weighed 165 lbs. When I left the ICU I weighed 90 lbs. Most of that weight loss happened in that first week. That day they decided to try feeding me for the first time, to see if my digestive tract had turned back on. Before that point the cranial swelling was bad enough that they were afraid they would have to operate on me again, and wanted to keep me in a state ready for surgery at all times. They fed me a tiny amount of food through a nasogastric feeding tube, equivalent to a bite or two, and watched what happened. I didn’t poop. This made them suspect that my digestive tract had not turned on. My brother pointed out that maybe feeding me one bite of food was not sufficient to reach that conclusion, that maybe they should give me a whole meal. They did. I still didn’t immediately poop. They were worried. My brother pointed out that people rarely poop immediately after eating, that maybe they should wait a while. They agreed, but stopped feeding me in the mean time and withdrew the feeding tube.
After a few days of my not pooping, and their installing and then removing a nasogastric feeding tube a few times, they set me up for another two surgeries. Because of problems with throat paralysis, they wanted to install a tracheostomy (the thing you see in movies where a choking person is fitted with a pen/straw/tube in their throat to let them breaths – that’s a tracheostomy, albeit a very crude and non-sterile one) to help me breathe and to install a PEG tube, so that instead of being fed through a tube in my nose I would be fed through a tube leading directly to my stomach. The trach would allow me to be removed from the ventilator, and the PEG would allow the nasal feeding tube to be removed. At the same time, to facilitate all of the injections and medications I was receiving and to keep me from looking like a heroin addict, they wanted to install a PICC line. That is basically a thingy that allowed them to inject drugs into my system without having to actually pierce my skin to do it, instead injecting them through a line that they’d already placed. On the day I got those three surgeries, one of my nurses commented that I was “cooking with gas” now. I remember her fondly; she was very cheery, and helped brighten an otherwise dismal experience. I think at one point I tried to set her up with another of my nurses who at this point I’m fairly certain was actually gay, and also 15 years her senior. Whoops.
The last three nights in ICU I remember being a mix of things. My mom bought me a Playstation 2, a small flatscreen that could be placed on my bedside table, and a copy of Grand Theft Auto: San Andreas and Grand Theft Auto: 4. It was just the right thing. Right about then, mindless violence and randomly wandering around the city committing felonies was a perfect fit for my mood. So at night, I played Playstation. By day I talked with my family. The major impediment I faced in those last days in the ICU was panic attacks, which struck about three times per day. There was no pattern to when they struck that I could discern, no pattern of thoughts or topic of conversation that triggered them. They just happened. I reasoned that that meant they were physiological, not psychological. When they happened, they felt like a weight on my chest and a vise on my heart. My heart would speed up and my breathing would get quick and shallow, not because I was scared or wanted it to but just because it felt like the pressure just drove them to do that. My heart sped up, not because I was scared but because I couldn’t make it slow down. The same was true of my breathing. I tried to get them to slow down, I desperately tried because I did not like that feeling, but it’s pretty hard to calm down when everything in your brain is telling you “BAD! WRONG! MUST STOP! RUN AWAY!” despite there not being anything to run from. It felt sometimes like I was dying, and after my hard work to stay alive and sane that was really worrying. But those thoughts came from nowhere, and when they told me that I was fine and there was no reason to think that, they didn’t go away, so I didn’t know what to make of it. Once, I held a whole conversation with my father about his dream farm in Oklahoma where he could live away from society, raising pigs and goats and crops, and all the while I was unavoidably thinking about how I was about to die and there was nothing I could do to stop it. I just learned to tell my mind to shut up, and even though that did nothing to abate the physical symptoms, it did make it a bit easier to handle.
My last night in the hospital was spent on the hospital floor, not in the ICU. They transferred me out when they had figured out which inpatient rehabilitation hospital to send me to, but were still working to transfer me there by getting a spare bed. I remember that that night held one of the more embarrassing experiences of my life. When I got into the room, a very special order accompanied me: “Enema”. The nurse assigned to the floor and to my room was a moderately attractive latina nurse who in other circumstances I would have been happy to pointlessly flirt with. In these circumstances, well, yeah. So there I was, on a bed wheeled into the room, unable to sit up or move without help, and this woman’s orders are to put a tube up my butt and rinse out my insides on the off chance that stimulates me to poop. She does, and because I’m too weak to stand, I don’t rush to the restroom like one normally does when receiving that treatment. Instead, the action was contained to my hospital bed. In front of her. My next thought was “well, I guess flirting is out of the question now…”
And then I was transferred to the inpatient rehab hospital, which I will cover in the next part of this story. I left plenty of things out of this part (“Good lord, how can sitting in a chair be exhausting!” and taking my first assisted steps, and the annoyance of my nurses hearing “Call Laura and wish her Happy New Year!” when I meant to say, “Call Laura because I need her and want to hear her voice just once.”), but this story is getting long enough already.