Chapter 10 - Sleep

Night time at the hospital was, ironically, possibly one of the most mentally exhausting parts of the whole rehab process. Just on a structural level, because you can’t move, those pressure sores are a real worry and so in the beginning you get woken up every 30 min so 2 people can come in and turn you. I still remember getting to choose whether I started on my left side, right side, or back, feeling like a significant decision. This was most likely because sleeping on either side was massively uncomfortable which meant that at least half the time I was in significant pain or discomfort. To the credit of the CNA’s who had the unfortunate task of waking up a bunch of cranky ass freshly paralyzed people, there were a significant number of times where they were able to do this without waking me up. Even when I was awake, I remember countless conversations with the CNAs about all sorts of random things, including one conversation with a young woman who was interested in engineering, where we talked about the counterbalances at the tops of cranes. Next time you see a giant crane, the construction tool not the bird, look at the short end of the crane at the top, there will be a number of large blocks that are made of metal, concrete, or a mix of both. Those blocks are used as counter weights as the crane lifts and maneuvers its payload. Ironically, even though I could recognize them, I almost never saw what the CNAs actually looked like, I only knew their silhouettes, voices, and mannerisms. They made the most unpleasant things tolerable. Who would have thought I would like the people who woke me up multiple times a night, every night, for months…

Now, for those times where you woke up on your own accord due to pain, discomfort, nervous energy, or from being in the middle of a panic attack, there was a call system set up that would call the main desk for your floor or wing. There were multiple trigger types for this call system including a ball hanging from a string that you would hit, a cell phone size pressure plate that you could press, or even a button built into the hospital bed; it would be a while before I would have the dexterity to be able to use that button. I started off with the ball hanging from a string because it seemed fairly straightforward but also difficult to accidentally trigger. I remember waking up one night in a significant amount of pain and trying to hit the ball… After about 4 or 5 complete misses, my anxiety started to build. Each attempt required a significant amount of energy, just lifting my arm required a fair amount of energy and concentration but then to try to swing it in a controlled manner and hit a target proved far more difficult than I had anticipated. Of course, we had tested this out beforehand, but when something works the first time quite easily in ideal conditions, it’s tough to remember how much more difficult it can be when you’re tired, in a strange position, or any other little thing is different. Finally, on my next attempt I made decent contact and the ball started swinging, I felt like I just hit a home run. However, instead of the deafening roar of the crowd [the sound of the nurse asking if I was okay or needed anything], I was met by a concerning silence. After a few seconds of intently listening for a response over my increasingly heavy breathing, I realized no response was coming and I would have to try again.

Over the next dozen or so attempts, I was able to hit the trigger once or twice more but heard nothing but panic inducing silence. Aside from just giving up, there weren’t many alternatives. Without a voice, you can’t call out for help; without muscle control, you can’t make enough noise to attract attention; and without triceps, once your arm gets into a bad position there is no recovery. Now you’re stuck, in an even more uncomfortable position than before, and provided that you’re not actually dying to the extent where your monitoring equipment is alerting someone, you have to just ride out whatever situation you’re in. When the CNAs did come in to turn me, they found me sobbing, at the end of a panic attack, just exhausted… It’s also not a quick procedure to describe what the issue is when you can’t speak and they can’t see you mouthing the words in the dark, and I hadn’t quite yet learned how to whisper out a few words at a time.

Because I spent a significant amount of time in bed while I was at Craig, and I wasn’t able to keep myself warm, I was perpetually covered in blankets. There was a myriad of choices when it came to the types of blankets, which could be combined to keep you comfortable in just about any situation, including an entire selection of heated blankets. The nurses and CNAs did a great job of tucking me in and making sure I was warm enough, fully cocooning me in blankets when needed, leaving just my face poking out, as if I were just poorly anthropomorphized bedding. The weight and warmth of being properly tucked in is surprisingly comforting, as well as comfortable. It probably stems from the same idea as weighted blankets or those hug machines or squeeze boxes designed by Temple Grandin to calm hypersensitive persons (typically with autism); like getting a hug, but without any anxiety that may come from hugging an actual person. That all seems great until you try to move and it feels as if the blanket somehow weighs 10,000-lbs when you try to lift it but lies as gently as a feather on top of you. It seems pretty obvious that if you are struggling to lift your arm when nothing is on top of it, adding a blanket completely immobilizes you. I guess it’s not too dissimilar to wrapping a baby in a blanket; it's soft, comfortable, and calming, but if they try to move, it might as well be a strait jacket. The thing is, when you are cold and shaking and twitching, you don’t necessarily always remember that it is a thing and all you care about is getting warm again. By the time I was feeling warm and able to start thinking again, as if my brain needed to be defrosted, it was too late and I might find myself alone in the room, unable to move, unable to reach the call button, with my body temperature continually climbing, underneath that blanket made of lead. 

As a kid, my mom was always the one to deal with my panic attacks and always helped calm me down. She would always stop whatever she was doing to come sit by my bed, just keeping me tethered to reality. Occasionally, if I was really spiraling out of control, she would rub my back until I fell asleep. She passed away 5 years before my accident, and while I would have loved to have her there for everything, I figured at least she didn’t have to see all of it. After my accident when I was in the ICU, my sister and Tyler filled that role, where just their presence was calming. A lot like the nurse’s daughter who sat with me and held my hand just after I broke my neck, I couldn’t feel her holding my hand and there was nothing she could do to help me, but having her there made me feel safer. Once I was at Craig and had gotten more used to being there, I didn’t always have someone staying in my room. My sister and dad would go back to their room in the outpatient and family housing building. Honestly, dealing with everything they had to and then sleeping on an uncomfortable bed and getting woken up multiple times a night must have been utterly exhausting.

I remember waking up one night after having a fairly normal dream… Well, before that, I guess I should explain that there was a strange progression in my dreams, where they took a while to catch up to the fact that I was paralyzed. It would start with little bits where I am in a wheelchair but then continuity would be broken and I’d be kicking a soccer ball or I would be walking but couldn’t go up and down stairs. It eventually became reality inside of my dreams as well, a hell of a phrase… in any case, that night, I woke up after a dream where I was fully able and I hadn’t yet come to terms with my paralysis. Had I been able to move I would have jumped; it was a shock. I didn’t really know where I was or what was happening, I was disoriented and in panic. No one was in the room and I couldn’t move. It took me a few seconds to realize where I was enough to hit the call button. When the nurse on the other side answered and asked what I needed, I remember just fighting through tears to say that I didn’t know and just asked them to send someone. The panic in my voice and the lack of any explanation must have been pretty concerning because in no time, two nurses and two CNAs showed up in my room. I still couldn’t really explain what was wrong, just that I was confused. Once they determined that there was nothing wrong, medically speaking, one of the nurses and one of the CNAs left while the other two stayed behind. They calmly explained what had happened to me and where I was, this was obviously not the first time they had to reorient someone. By the time they were explaining it all to me, I was just thinking, “I know, I know… but, I was just fine, now I’m paralyzed again.” I was fully aware of my situation within reality and that I had just woken up from a dream, and yet, I was still massively disoriented. They sat with me, held my hand, wiped my tears, and kept me company while I calmed down and reoriented myself within reality. Their presence just provided that bit of comfort that just makes you feel like things are going to be ok.