Spending a year and a half being locked in, then virtually locked in and finally nonverbal, I had so much time with personal introspective thoughts. I was speaking with myself, in my own mind, about everything, all day long. Two voices, both my own. When I think about this, it’s apparent that I was working out all my internal issues, more so than most people do in a lifetime; the ultimate therapeutic retreat. This was a self help workshop that virtually no one has or will go through. Luckily, I have come out the other side as a better person. I really thought about and discussed absolutely everything with myself. It’s not that I have fully overcome all my life problems, but more like I have come to terms with everything that saddened me in the past that had originally caused me to self-medicate.
Locked-in syndrome is a rare neurological disorder characterized by complete paralysis of voluntary muscles, except for involuntary vertical eye movements, and in my case, functionality of my ears. People with locked-in syndrome are conscious, can think and reason, and in my case, ejaculate, but are unable to speak or move.
There’s quite a bit of misinformation on the web about the severity levels of Locked-In Syndrome. Here’s how my medical and therapeutic teams (and myself) define these stages:
Virtually locked-in means I had a yes and no system. My process was to stick out my tongue for yes and blink for no.
Completely locked-in means I could do nothing except listen with my ears and experience a positional eye gaze, meaning I could only see the direct area in front of me based on how the staff would position me in bed.
Non-verbal means I could actually use a letter board (sometimes known as an AEIOU board) for communicating basic words. Later, when I learned how to use the MegaBee, I could communicate more complex thoughts and phrases.
In my attempts to describe the locked in state, there are several adjectives that come to mind, but nothing can truly describe it. It is unbelievably sad, scary, lonely, depressing, and feels like time is at a standstill. It felt helpless to have people saying to me “Give me a sign.” “Jake, if you can hear me, blink or signal, in any way possible.” But then not being able to do so felt extremely helpless and hopeless.
Before hospice, there was a time period of being completely locked in that lasted for about a month and a half where I was in the Neuro-ICU. My visitors would come into my room and ask the nurses if I could hear them speaking. The medical staff would explain “We don’t think so, but we encourage you to speak to the patient as if they can hear you.” I remember a time when a family member came into my room and it was like my eyes were looking down on me from above. I had a view of the entire room, like I was behind a fish-eye lens inside the ceiling from within a security camera. It was strange, I could see myself and, at first, I thought I must have been hallucinating. However, this continued on for a long period of time. Keep in mind, I could not move my eyes at all. However, I could see everything in the room as if I had full range of vision. I could see my visitor sitting in a chair, he was wearing blue jeans and a jacket. As he was speaking to me, I could literally see his mouth moving and his facial expressions. My visitor said “Jake, I’m not sure if you can hear me, but if you can, I can tell that you’re struggling and fighting for your life. I want you to know it’s okay to let go.” I heard this and I felt a deep sadness. I wanted to cry because I knew I was dying. There were no illusions here. I knew death was imminent, but to hear these words coming from a loved one made everything even more depressing. My immediate thought was “Nope, not going out like this. I appreciate you letting me know, but I can’t give up. I’m not fucking going out like this.” Although my eyes were looking at the ceiling, through this out-of-body experience I could observe everything around me. I was thinking to myself, this is insane because I know I cannot move my head or look anywhere, yet I can actually see the hand gestures and facial expressions of everyone around me.
Over the course of my terminal disease, I made many transitions between hospitals, home, hospice, and back again. During these times, I went from being virtually locked-in, to completely locked-in, broke through to being virtually locked-in again, and then finally became non-verbal.
I was so frustrated with being virtually locked in and so irate with becoming completely locked in, it’s my belief that I internally revolted against each stage. I believe this is what helped push me to become non-verbal and finally verbal again.
These stages of locked-in were dark times for me because I could never fully express my needs or wants. For example, there wasn't a clock in my line of sight, so I never knew the time. I couldn't tell anyone if my mouth was dry, if I was hungry, or if I had an itch that needed to be scratched. This was a daily struggle and sometimes even more debilitating than the physical and mental pain I was experiencing. One day, I had a pretty bad wedgie. A nurse entered my room to reposition me in bed, which caused my existing wedgie to become supersonic. I thought to myself “Fuck, this is so bad I can taste it.” And I had to sit with that wedgie. About 4 hours later, I’d be given a large bolus dose of Osmolite 1% nutrients in my feeding tube. Eventually, I’d evacuate my bowels. Without the ability to call for help, I would continue to sit with that, too. At some point, I discovered that I could increase my heart rate by panicking, raising it above 160 beats per minute which would cause the critical care monitoring device to alert the nurses station. My machine's alarm was set to alert at a higher than normal rhythm because I was constantly having autonomic storms. During the autonomic storms, my heart would race so fast that I would be dripping with sweat, a dangerous and typically fatal medical event, but I managed to survive. My heart rate would spike to about 180 BPM, which is extremely high and made it difficult to breathe, causing me to feel as if I was having a heart attack.
Being so uncomfortable with my situation and needing immediate assistance with no way to signal for help, I learned that I could set off this heart monitor alarm by making myself anxious just to get their attention. Knowing that I could now get the attention of the nurses station without communicating was an awesome moment for me. I knew that if I pushed my heart too hard during this attempt to get their attention, I would have an autonomic storming event, so I had to be careful and freak out just the right amount, only enough to set off the alarm, but not enough to go into an autonomic storm, which could potentially put me in cardiac arrest. When I'd work myself up into an anxious state with a high heart rate and set off the alarm, only then would they realize I was covered in feces and at this point, they would relieve my wedgie. It's such a helpless and demoralizing feeling to live without having the ability to express yourself.
When I finally broke out of this stage of being completely locked in, and moved into the period of being virtually locked in for the second time, the speech pathologists and the complex care team discovered I could minimally stick my tongue, just enough to specify a letter, and then eventually spell out a word letter by letter. No one knew I had the mental capacity to do this. My family said they could always tell I was “in there” because of my eyes, but all the medical professionals disagreed because family members tend to see what they want to see. And sometimes they are correct, but in my case, I was "in there" all along, more present than ever.
Autonomic Storming