The strangest part was the realization. The moments when I first started gaining consciousness.
It was surreal to say the least. I had no idea what had happened or what was happening.
It was an unfathomable, dreamlike disorientation and sense of helplessness that could only
possibly be known through firsthand experience. When I first came to awareness, I was lying
on my bed with my face angled up, slightly to the left. I could see and think as if everything
was normal, except one thing; I couldn’t move. I couldn’t move my eyeballs from their
fixed position. I couldn’t control my eye lids to open or close them on command. I couldn’t
voluntarily move my arms or legs or any part of my upper or lower body. I couldn’t open
or close my mouth to speak or scream; I couldn’t do anything other than lay confined to my
fixed position. Admittedly, at first, I thought I was dead.
I thought that I was in some strange afterlife limbo, just sort of peering out at the world
from where I had died. But everything seemed too real. Too normal. And after a little time
went by, I realized that I kept sort of waking in and out of everything as if there was still
a sleeping and waking brain inside me. I considered that perhaps instead, I was experiencing sleep
paralysis or a sequence of really strange lucid dreams. But I didn’t remember going
to bed and it quickly felt beyond that too. If it was a dream, why was I continually returning
to what felt like the same dream over and over, which was just the same relatively banal
situation of being stuck on my bed. And furthermore, I could remember each previous dream in each
following dream, which didn’t feel very dreamlike.
Over what must have been some length of dipping and peaking in and out consciousness, I considered
every sort of strange hallucinatory and psychological possibility for what was going on, but the
flurry of momentary awareness made it impossible to maintain mental clarity long enough to
really flesh out any thoughts. It was all mostly a blur and I had no idea what was happening.
After some further length of time, which I cannot speak to how long, I started coming
into the awareness that there were people around me. My parents and older sister and
what appeared to be doctors, nurses, and other unfamiliar voices and faces. They were all
looking at me. Interacting with me. Talking to me. Intensely in many cases. Doctors appeared
to be testing and probing me with various equipment and lights. They were all treating
me as if I was there physically but not mentally; as if I couldn’t understand them. But during
the moments when I was awake and aware, I could basically hear, see, and understand
everything as if it was happening normally. But I just couldn’t say or move or do anything
back. I was completely trapped inside my body. It was hard to fully make sense of what was
happening for a while still, but eventually, after experiencing longer periods of conscious
alertness, I started to hear and make out more of what was being said and done, and
I realized that the issue wasn’t metaphysical at all. I wasn’t dead or dreaming or anything
of the sort. It was very physical and real. At one point, I recall hearing what seemed
to be a doctor talking to my parents, saying that she believed I was mentally gone, without
any real way of knowing if or when I might return. I remember she said something about
how it was still unclear exactly what was happening and suggested that were still other
things to be done, tests to be performed, and other doctors to be consulted.
One of the scariest parts of the entire thing was much further in when I heard what seemed
to be the 9th or 10th doctor who was, according to all the previous doctors, supposed to be
one the leading experts in cases like mine, essentially say that he didn’t know what
was happening either. That there was really no way of knowing for sure what was happening
or if there was any real consciousness taking place inside me and thus, no way of effectively
treating or understanding my condition with any certainty. I also heard him say that the
condition almost surely came with a 100% fatality rate.
I could sense the utter and complete devastation in my parents and friends and family without
even needing to see or hear them. I knew that they, like I, had no control over what was
happening and felt an ironically similar form of despairing helplessness.
I had so many things I wanted to say to help them better understand. I had never wanted
anything more in my life than to tell them that I was there. That I was still inside
my head and that I still knew who they were. That things might still be ok. But I couldn’t.
I couldn’t say any of the words. Or reach out and touch them. Or blink on command. Or
communicate in any meaningfully intentional way. Communication was helplessly disconnected
from me. I think that’s probably one of the hardest things anyone can deal with; wanting
to say and do something to help those you love, and not being able to.
For a mind that wants things. For a mind that seems to define itself through its ability
to cause and effect; will and react; it all comes down to control. But when you find yourself
in a reality that you essentially have none over, you are confronted with an insatiable,
overwhelming drowning sense of anger, frustration, and terror. The feeling of being aware of
what’s happening but not being able to understand why or do anything about it. That is what
it all boils down to. What was happening was no longer really the
primary question or concern for me. I knew basically enough about what was happening.
And so, the question became why and what now? In general, I could never truly tell how much
time was passing. Nor can I recall now. I do remember a distinct turning point, though.
A point that I believe my entire survival hinged on. It was when I heard my parents
talking with one of the doctors or nurses or someone about whether or not they might
consider a time at which they would take me off life support. I remember hoping with unquestionable
intensity that they wouldn’t. That they would just hold on a little longer. I wanted
to scream out to them and tell them to wait and that I was still in there. And in this,
I suddenly realized that I wanted to keep living. That despite my condition; despite
the obvious misery and potential hopelessness; when presented with the possibility of having
it all end, I preferred the potential horribleness of it all continuing over the idea of it all
ending. I preferred living and seeing it through, even if I was helplessly stuck inside myself
with no control , and even if there was no clear chance of whether or not it would get
any better. I wanted life in any form I could have it.
Somewhere around and after this point, I made the ironically conscious choice to sort of
quiet my consciousness. Not to surrender, but more the opposite if anything. To strategically
conserve my conscious efforts away from what might ordinarily be conscious; the sort of
heavy thinking, ruminating, and attempting to control, solve, or make sense of the situation,
and instead, I decided to just live in it as long as I could as well as I could.
The line between consciously giving up and being consciously intentional with how little
you use your consciousness is both absurdly subtle and abstractly impossible to translate,
and I can’t say with any certainty how well I accomplished any sort of ideal balance,
and I’m not sure any ideal balance is even possible. To even consider the idea with such
terms already undermines it. But for the lack of better terms, it’s what I think I tried
to do. Ultimately, the problem was only compounded
by my relentless yearning and struggling against it; a continual fighting and waiting and expecting
for things to get better and gain control over a reality I had none over. Of course,
that was the natural response, and there’s no denying the unimaginable difficulty of
the condition. But my constant efforts and expectations of it resolving didn’t help.
Rather, it only seemed to make things worse. I felt like I was stuck in the Chinese finger
trap thing that my grandpa used to have and show me when I was a younger child. The thing
where the harder you try to pull your finger out, the tighter it squeezes around it. The
more I squirmed and yearned for control; the tighter things got. There was no escape and
no resolution other than learning how to live without one, which I’ve learned that paradoxically,
in its own way, is one. Fundamentally, I had no real control over
anything outside myself. But I did have control, or at least the sense of control, over my
thoughts. I was still there. And I could still think and consider how to think. And if there
was any hope, it was in this. In subverting my own thinking against itself. In focusing
more of my attention on things that I could control and that might help pass the time
in a meaningful way. In trying to find things to be appreciative of and interested in. In
examining the complexity, wonder and depth of beauty of things in and around me, even
in the simplest moments of apparent banal nothingness.
The trick, it seemed, was not wanting or depending on control. Not wanting or depending on answers.
Not looking for or expecting anything, really. Just observing and appreciating as best as
I could, as deeply as I could, and as often as I could. Trying my best to just be ok with
just being. And I think only because of that, I was able
to survive. I was able to want to survive and continue, and I was, at times, able to
be ok. And then, eventually, I awoke. Muscle by muscle.
Cell by cell. I awoke.