For people that don’t know, I’ve always had plans of writing a book about my post-spinal cord injury life’s experiences. For those that do know that it’s become a bit of an inside joke that I am because it has been taking me so long to do it.
The short shrift of my book writing history is that I started writing it the summer after my freshman year of college, but I didn’t get very far because I kept starting over. I picked it up again during the year I took off between college and law school and felt like I got a lot done. I decided that I made more effective use of my time by jumping from topic to topic instead of going from A to Z. That way if I got writer’s block on one topic I could keep momentum going on another. But of the 80 or so pages I wrote that summer I think most of the stuff that I wrote is useless. For example, I can’t imagine people will be too interested in reading the 20 pages that I wrote about getting dumped on prom night—stories that I felt set the stage for where my life was going leading up to my diving accident—but I think that most people will care most about my life post-SCI. That’s where the meat of the story is after all.
Once law school started I didn’t touch it for another five years until after I graduated, passed the bar, became an attorney, then struggled to find work. Someone who’s written a few books once gave me advice to never go back and edit old stuff because you’ll be hard-pressed to keep making forward progress. But I did go against that advice to edit and redo the chapter I wrote about the day of my accident and have it propel me forward from there. That worked for a while. But then I met someone and over the course of our ensuing year-long relationship whatever free time I wasn’t spending with her was spent job searching, a few side legal projects, and some part-time paid legal blog writing on top of my blog post writing for both this blog and the EasyStand Blog. In other words, I didn’t have or make the time for book writing.
But it’s been almost 17 years since my SCI and I’ve been making more of a concerted effort to get this writing done lately. I should have cranked it out by now, really. That said, one of my original visions for this blog was to post the occasional excerpt from my book to drum up interest, get feedback, and keep me motivated on working towards finishing it.
So here we go. This excerpt essentially follows on the heels of my July 12 post, which was only my second post on this blog back in 2009. Because that July 12 post was an edited 2,335 word excerpt of what (as of now) is a 15 page chapter you will see a little overlap between the end of that post and the start of the excerpt below. Also, please keep in mind that this excerpt is “blog post edited” and not “finished product edited.” Cheers, enjoy:
After the X-ray and MRI exams finished I think I was wheeled directly to my intensive care room. I tried my best to relax, but it was hard while also bracing myself for whatever was coming next. After an undetermined amount of time passed a middle-aged man with mostly grey hair walked in like a man on a mission. Without any introduction of any kind he went to the right side of my bed and poked my head near the temple with a sharp skin punch that damn near punctured me down to the skull bone. As he went to follow suit on the other side I don’t remember if I had an audible “Ow, what the hell was that for?!” reaction or if I reacted with shocked silence. Probably a combination of both. Either way, a heads up before he started poking holes in my head would have been nice.
After he was through he finally conceded that he was my new neurologist. He did that to me because he needed to put me in traction for the next few days to keep my neck stable. Traction was an apparatus that had a metal head harness with weights attached to it so that I would have zero movement in my neck and spine while the swelling went down. The screws for the head frame had to practically be screwed into my skull. It was akin to having somebody tighten a vice grip on your head and obviously it hurt like hell. My head throbbed with pain for hours until I just got used to it. Good times. I still have the scars to this day. Hair doesn’t grow on them so whenever I get my hair cut there is no hiding them. Thankfully, they’re only about the size of a pencil eraser but obvious enough that I still get questions about them. They used to really bother me but as the years have gone by I have paid less and less attention to them.
But that would prove to be a foreshadowed microcosm of that doctor’s poor bedside manner. The guy was an ice cold, all business, and arrogant doctor, which was about the last thing that a physically traumatized teenager needed at such a scary juncture. Somewhere around there I was also prescribed some form of steroids to reduce the swelling in my damaged spinal cord.
Prior to putting me into traction he had determined my diagnosis. I had sustained a spinal cord injury predominantly at the c-7 level. Because the impact of my diving accident didn’t sever my spinal cord my SCI was considered an incomplete injury, as compared to a complete injury where the spinal cord is completely severed. The result was that I was significantly paralyzed to a yet to be determined degree. Significant degree was right—I couldn’t move a thing below my shoulders.
Once I was put in traction all of the commotion was essentially over other than the typical, frequent nurse monitoring that goes along with patients in ICU. The only other item of business that was covered that night was scheduling a neck fusion surgery that would clean up the damage and stabilize my neck. That would go down on Monday morning.
I don’t remember anything else notable happening after that. It was too late at night for any of my extended family to make it a worthwhile trip to stop by so I didn’t receive any visitors. My family stuck around for a quite while into the night hours until it didn’t make any sense for them to stay any longer. Since things were still traumatic and touch and go one of my parents, my mom I believe, stayed on a cot in a room down the hall from the ICU and my dad went home with my sister. Eventually, somewhere around midnight I figure, after what felt like hours of stress and commotion that ran the full spectrum of emotions, I must have just passed out from exhaustion. And so the waiting game for major neck fusion surgery—the next marquis event in my life—began.
I don’t remember how well I slept that night or for how long. But given the circumstances I assume not that well with nurses in my room checking vitals, urine output, and my IV machines about once an hour. Lying flat on my back with my skull bolted onto my bed frame stuck indefinitely in an ICU room is about as far outside my comfort zone of sleeping on my stomach in my own bed at home as it gets. Then again, I was exhausted from all the stress and drama so I’m sure I did sleep for some extended periods. Oddly enough, there is a certain safe and calming effect to the blended murmur of quietly beeping machines, ICU nurses at the nursing station, and other middle of the night quiet noise of the hospital. That said, I don’t remember when my family came in to say good morning.
As mentioned, my neck fusion surgery was scheduled for first thing Monday morning, so there was quite literally nothing to do but wait until the time of the procedure arrived. It was the longest two days (and change) of my life.
The ICU was buried somewhere in the corner of the first floor of the hospital behind a door that said “Authorized Personnel Only.” My room wasn’t too far in from that door because every time that anyone came in or went out I would hear it click and wind open. The room I was in didn’t have any windows or natural light. Moreover, the lights were left pretty low because a handful of my IV meds were sensitive to light so they purposely kept the whole room pretty dark. It felt like a tomb.
Because I was stuck flat on my back in traction my only view was the ceiling, save for whatever I could see with my peripheral vision. And with the side frames of the bed in the upright position at all times that peripheral viewpoint was minimal. I don’t think that there was a TV in my room, and even if there was it was pointless to have it on because I couldn’t see the screen anyway. Anybody who talked to me had to lean over the bed and look straight down at my face.
I couldn’t see the clock either, and that combined with the darkened room meant that I never had a true sense of what time a day it was unless I asked someone. There were no mealtimes to gauge the time of day either, both because eating on my back made me highly susceptible to choking and surgery usually requires a patient to have not eaten a meal for the better part of a day prior the procedure. Instead I got my nourishment via IV meds that were akin to super badass Gatorade. So most of my time consisted of staring at the ceiling or trying to sleep. It was a frustratingly awful solitary existence.
My only entertainment was when someone was in the room with me, but because it was an ICU nobody other than medical personnel could stay in my room for very long in case it disrupted the other patients. Regardless, I found myself salivating for constant, prolonged interaction with my parents whose presence was a major calming influence and reality check during the initial hours of adjustment to ICU life. I was trying to be tough and not needy so I tried to send the nurses for them as little as possible. But every time they entered my room it lifted my spirits immensely.
Along those same lines the most stand out thing about that Saturday was that my parents were able to let a few visitors come back to see me. But it could only be one or two at a time and they had to be family or very close friends. Obviously, family got a priority pass to come back but my parents had to be more of a gatekeeper when it came to my friends. Between the friends that returned from the night before in hopes of getting a chance to see me and word about my accident getting out the waiting room was overflowing with prospective visitors. I don’t recall them coming in to tell me that so and so friend was here and wanted to see me, so which friends were allowed to come back was essentially at my parent’s discretion. In essence, my parents cherry picked from which friends they knew the most or were most familiar with, not truly aware of which friends I considered the closest at the time. Unfortunately, that caused some hurt feelings. For example, my childhood best friend Brad—who I had grown apart from through middle and high school, but we reconnected when I was in college and are very close again—my mom brought back to see me immediately. I guess my mom saw him come in and was like, “Shawn would want to see you.” Meanwhile, a different friend Brad—who I was much closer friends with at the time—wasn’t brought back. Hopefully, all of those friends who didn’t make the cut understood, given the circumstances.
Of course, I was out of it for the better part of that day due to a combination of my body recovering from trauma, medication, and cabin fever so I can’t really remember which specific friends or family came back. But as the days, weeks, months, and years went by a variety of friends would ask if either I remember that they visited me or if my parents told me that they had tried to visit me. There were too many people so in most cases it was no on both accounts. Even if I didn’t have a big say over who visited me, or knew who was out in the waiting room, or couldn’t visit with people for very long, it was nice knowing that so many cared and reached out to me and my family. Very touching.
While Saturday was a mostly forgettable cycle of sleep, staring at the ceiling, nurse duties, check ins by my parents, and brief chats with visitors, the Saturday night to Monday morning stretch was the worst. By the time Sunday rolled around I didn’t know if I had slept two minutes or two hours. I had no idea whether it was AM or PM. At one point I had myself thoroughly convinced that it was 6 AM Monday morning and I was finally in the homestretch to my surgery time. When I asked what time it was and was told it was only 6 PM Sunday night I completely lost my shit. In the blink of an eye time went backwards by 12 more hours. My patience had worn thin and I couldn’t take waiting anymore.
Being a total movie buff the best analogy that I can come up with for how my psyche devolved over those two days is the sequence from “Apocalypse Now” where Martin Sheen’s character Captain Willard is asked to stay in his hotel room and wait for his orders, which ultimately would take him into the heart of darkness to kill rogue Colonel Kurtz, played iconically by Marlon Brando. The wait for said orders takes a lot longer than expected to receive and as the days go by Willard starts going crazier and crazier cooped up in his room. He starts drinking, doing drugs, practicing karate moves, stripping his clothes off, tearing his room apart, etc. You set that to the music of “One” by Metallica, a song and music video that were based off of the novel Johnny Got His Gun by Dalton Trumbo. The novel tells the tale of a soldier who loses his limbs, eyes, ears, and mouth after getting hit by an artillery shell, but his mind still works perfectly. Thus he ends up stuck in a hospital trapped in a lifeless body. Very apropos of my situation. Whether I would have stripped naked, cranked metal, and trashed my room if I was physically capable of it at the time history will never know.
Once Monday morning finally rolled around I was both relieved and excited, which is strange to say about going into any major surgery, but I just wanted out of my current state and onto the next phase. However, my surgery got pushed from early in the morning until noon, thereby making an unbearably long wait even longer. But as disappointed as I was it was just a few more hours in the big picture. I could finally see the light at the end of the tunnel.
The surgery itself was going to be fairly extensive, as you could imagine. I broke my neck with such force that I shattered vertebrae at three cervical levels, from c-5 to c-7. I basically left a mini-cluster fuck of bone shrapnel inside my spinal column. As a result, people would often refer to my c-7 SCI as a “burst c-7,” a label that I never liked for some reason. Anyway, the surgical plan was basically two-fold with an option for a third. First, the doctor would go in through the back of my neck and remove all of the broken pieces of bone relieving the contact points on my spinal cord.
Secondly, he would replace my shattered vertebrae with one from a cadaver. The prospect of a dead person’s bone being placed in my body was creepy, but the other most common alternative was carving a vertebra shaped bone out of my hip bone and using that instead. The upside of that was that my neck would get fused with a vertebra with my own DNA. But the downside is that it could cause too much undue trauma and increased risk of infection to another part of my body. So the cadaver bone it was. Then when the new vertebra was put in place he would fuse a plate to the two vertebrae above and below the new replacement to hold it into place. At the least I was going to get a plate fused to the back of my spinal column, which was about a three hour procedure. If once they got in there and discovered that the damage to my spinal cord/neck was so extensive and/or it would need more stability then he would fuse a plate onto the front of my spinal column as well. That would also be about a three hour procedure. So obviously the hope was that I would only need one plate. Spoiler alert: I needed plates fused to both the front and back of my spinal column, and therefore was in surgery for six hours. I shudder to think about what my parents and sister went through during those six hours, especially when after three hours they were told that it would be an additional three hours.
Preparation for the surgery was interesting. Of course, they did the regular prep like IV’s, putting the surgical gown on, stuck on vitals monitors, etc. But was interesting, because it was a neurological procedure, was that they also stuck a number of these diode type pads to my head that would monitor my brain activity during the procedure. And when I say stuck I mean they essentially glued them onto my head. After the procedure it would take days and an army of my family members and my then-girlfriend to use alcohol pads to slowly chip that glue out of my hair.
The next step was to meet my anesthesiologist in the pre-op room, who incidentally was my seventh and eighth grade Spanish teacher’s (one of my all-time favorite teachers, in fact) husband. He did his thing and gave me the skinny on how things were going to go in that regard. This was my third major surgery within that same calendar year—two lung collapses procedures in September and June, respectively—so I knew the drill by then.
Once it was FINALLY time to roll me into the operating room it suddenly got very real. Deep down I was confident that it was all routine and going to go according to plan, but any time you get put under for major surgery it also carries that heavy “what if?” feeling that you might not wake up again. One of the hospital Sisters was made available and she led me and family in a quick prayer, which was reassuring. The hardest part, of course, was saying the pre-surgery goodbye to my family. We exchanged I love you’s and they said that they would be right outside in the waiting room the whole time. I tried my hardest not to cry, mostly because I couldn’t wipe my own tears. I also wanted to exude as much braveness as possible so that they wouldn’t worry about me being too scared. When I had one of my lung collapse surgeries I was able to do a look back and see them waving at me as I got wheeled through the OR doors. But I couldn’t do that this time and it added a little extra drama and loneliness to the whole situation.
Once we got inside they positioned my gurney next to the OR table and transferred me over with the sheet underneath me. Then they strapped my arms down, got everything else into position, and started getting the anesthesia meds set up. Out of nervous curiosity I asked what they were doing at every step of the way. I’m sure they couldn’t wait to knock me out.
As far as that went, everyone who’s seen any medical TV drama or movie that involves surgery knows that when they start putting patients under they ask them to start counting backwards from 10 or 100. As I mentioned, this was my third major surgery within a year and just to mess with them/give them something to talk about later I just kept talking instead. My whole premise, which I told them, was that I thought it would be kind of funny that they would know the last thing that I said before I was put out, but I wouldn’t. Even though I was scared out of my mind going into the biggest surgery of my entire life I still managed to rise above the fear and interject a little levity into the situation. That’s just who I am. So what I basically said was, “Instead of counting I think it would be funny if I just kept chattering like a monkey and only you guys would know what my last wor….” And I was out for the next six plus hours.