“I Could Be Wrong, But I’ve Never Been So Sure About Anything In My Life”

The title of this post is a phrase that I used when talking with my sister, when trying to desperately convey what was happening to me.  With every core ounce of my being, I thought that I understood virtually everything that was happening to me, as well as everything that was going to happen to me.  In hindsight, this was based on a combination of my personality (I could easily have made this the title of my autobiography, even without the TBI), and the potency of the relentless symptoms that I was experiencing.

That’s not to say that I didn’t know what I was talking about, though.  I’ve always been an introspective person, and while I have a tendency to exaggerate- even to myself- the way I processed my surroundings, right from the time that I regained consciousness, was like nothing I’d ever experienced before.  It was as though I had been born again, but not in a religious sort of way.  I felt like a different person, whose old manual had been ripped to shreds, and the new manual didn’t have enough rules to handle the complexity of everyday life.  It was the human equivalent of a computer’s operating system being hacked into and permanently damaged.  So even though nobody could see it- the gash on the top of my head notwithstanding- the damage went a lot deeper than anyone could have imagined.  It was an understandable, if frustrating, reaction from the outside world, given that concussions take time to heal.  Insofar as everyone could tell, I was just fine on a functional level.  But I knew that there was more to it- a LOT more.

What I didn’t understand, fortunately, was that I could work on a new way of operating- just because I was going by a different set of rules than what I was used to, didn’t mean I couldn’t start to figure out what those new rules were.  Also in hindsight, I see now that I made way too many assumptions, based solely on the reality of living with a brain injury for the rest of my life.

So now that a new life is hopefully starting to take shape, and seeing how we’re beginning a new year as I’m posting this, it seems like as good of a time as any to reflect on what I got right, what I got wrong, and what remains to be seen.  (I told you I was introspective!)

Team “I’ve Never Been So Sure Of Anything In My Life”

  • The person who I was, is no more.  This was non-negotiable from the beginning.  I own up to the fact that I thought I knew things that turned out differently, but this one was a no-doubter.

    Yeah, yeah, yeah- I still look the same, talk the same, have the same core beliefs, etc. etc..  But I don’t feel the same.  By that, I don’t mean that my mood has changed, although that is certainly true, as well.  It’s sort of like those movies from the 80’s, where two people switch bodies.  The only difference here is that I’m switching with myself!  I have all the memories and all the instructions on how I would handle situations, and can mimic that behavior at times.  But I either can’t feel it within myself, or the feeling is greatly diminished.  Actually, I think a better comparison would be from the TV show “Dexter”, if you can get past the serial killer part.

    Most unapparent to the outside observer, but most prominent within myself, is my inner dialog.  I had a natural silliness, bordering on absurd, which kept me constantly amused.  For example, I’d narrate in Charleton Heston’s voice for no reason.  (“My God…these socks that I’m putting on now are some DAMN FINE SOCKS!”)  This served me well with kids, particularly my niece and nephew.  But that inner-voice is gone now, replaced by a serious one that is at times encouraging (“Come on, you can get through this!”) and at times frightened and/or angry, (“Who do you think you’re kidding?!  Look at what happened to you!  What are we even trying to accomplish here?!”)  Forcing myself to replicate the old voice can be tough, like when I tried to greet my seven year old nephew with something funny, and all I could come up with was, “Boo!”  He smiled a little bit, but sounded a little bit jaded as he said, “That didn’t even scare me.”

    The point here is that I was instantly turned into someone else, without my permission.  And I knew it from the start.

  • The life that I knew was over.  This is sort of derived from the first point.  I spent about a month in California after my accident, but deep down inside, I knew that the clock was ticking.  It just took a while to fully accept Plan B.  More on that later.
  • My senses were permanently damaged.  I imagine that some people, perhaps even doctors, would object to this.  But I don’t even remember what normal sight and sound are anymore!Actually, sound hasn’t changed much, but my toleration for it has.  A lot.  I used to go to sold out sporting events and rock concerts.  Now, I can’t even use a hand dryer.  Sight is sort of the opposite.  It doesn’t hurt, it’s just really disturbing, like some sort of bad psychedelic trip.  Shadows of images can linger for minutes, bright colors jump out as if I’m wearing 3D glasses, and blank walls look like they’re constantly moving.  Sometimes when the lights are out, I’ll see moving patterns that don’t even exist.Does this sound like something that “just needs a little patience”?  If so, I’d love to have whatever drugs you’re taking!

Team “I Could Be Wrong” (or at least wildly exaggerating)

  • The symptoms will never improve.  Score this one for the professionals.  In my defense, what I was experiencing was absolutely terrifying- a horror movie in real life, all coming from within.  Nobody could give me an explanation or a prognosis, other than the fact that I had a head injury, and sometimes things get better.  Sometimes.  But lying in bed, slowly rocking back and forth like a 3.5 earthquake was going on, when the movement was actually coming from my central nervous system…well, just try to imagine how you’d feel!  At the same time, I was so dizzy that I felt like I was being thrown off of a ride, even though I wasn’t moving at all.  (Aforementioned tremors notwithstanding.)  My skull felt like it was being pressed on, and the pressure wasn’t even staying in one place!  My brain had constant vibrating sensations, similar to an electric shock.  There were waves of pulsations swimming and swirling inside my head, as well.  Reading all this now, it’s a wonder I ever got out of the mental hospital!

    Anyway, much of this went away after about six months or so, just as the doctors suggested.  Still, however, I have tiny, never-ending tremors in my head, and sometimes my body still feels like it’s rocking back and forth a little bit, particularly when I’m nervous.  And there are still ongoing sensations in my head, although not nearly as prominent as they once were.  (There’s also some pretty vicious cracking in my neck and right side of my jaw, although technically I suppose that doesn’t count as part of the brain injury.)

  • Moving back to the east coast (aka “Plan B”) is a fate worse than death.  I came up with this one LONG before my brain injury.  I moved to California in 1998, and was strongly determined to move to the west coast, even well before that.  Throughout that whole time, I viewed a return to the east coast as nothing short of a total failure.  I was determined to let nothing less than a catastrophic natural disaster allow me to reconsider.  As it turned out, I hadn’t also considered the possibility of a catastrophic personal disaster.  It’s taken a while, but I’ve accepted that being here isn’t so bad, after all.  Having said that, I STILL don’t plan on staying forever.  Once again, more on that later.
  • I will no longer be able to date.  I tried it for a half-hour the day before I left California.  All I remember is that it was surely a normal conversation to the outside observer, but all I could think the whole time was, “This is excruciating.”  With all that was going on inside my head, combined with my sensory issues that prevented me from wanting to go anywhere or do anything, why would another human want to spend time with me?  (To say nothing of the fact that I didn’t want to be around anyone, either.  Also, it doesn’t help that I can no longer drive.)Well…it turns out I can have some social life again.  It’s been a very slow, gradual process, and I don’t know how much of it I’ll be able to get back.  I still maintain that a long-term relationship, which I wasn’t particularly good at before the accident, will be virtually impossible.   I think I would need to find someone who is a combination of Florence Nightengale, Mother Theresa, June Carter, and Felicity Jones.  (I’ll let you decide what qualities of each that I’m looking for.)  But either way, once again, I’ve proven to myself I can handle more than I initially thought I was capable of.
  • I will never play guitar again.  I tried it a few times in 2017, and was so disgusted with my regression, as well as how joyless I felt, I just put it away one day, and figured I was done for good.  (The symptoms didn’t help, either.)  Then in October 2018, I just kind of figured, “Eh, why not try it again.”  Don’t ask me why, but somehow, it didn’t feel terrible.  And I felt instantly motivated to take at least one aspect of my life back, which I had control over.The fact is that I can use my brain injury as a legitimate reason to curtail a lot of activities, but I can’t really use it for this one.  Yes, it carries some reminders of what I used to have, but so does eating.  Am I supposed to change out everything in my diet because the packaging carries memories?  Being triggered is a serious thing, but so is wasting away.  I need consistent hobbies, and this is one that I used to be very serious about.  There’s no sense in wondering “what might have been” in this case, seeing how I can do something about it.  So after nearly three months of practicing, just a couple of days before the end of the year, I was able to beat my pre-TBI record of 432 notes/minute.  Improvement in this area requires practice nearly every day, so I need to keep going with this.  Kind of a microcosm of life itself.
  • Mass transit will be too difficult to take.  I wasn’t wrong about it being difficult- just the fact that I wouldn’t be able to face up to it.  Sensory overload restricts activities that I am willing to do (ie. things I can control), along with activities that I am able to do.  Gradually, I am getting better at distinguishing the two categories.  For the former, it’s a matter of how far I can push myself.  Not being able to drive, I have to rely on others to get me around, which can be very costly.  The good news is that there are funds for people with disabilities, so I’ve been determined to take advantage of that.  But it requires me to get on busses and trains, which I didn’t think I could handle.  Eventually, I faced up to my fears and managed to handle them, if not conquer them- I still feel sort of like a kid at school, getting onto the bus for the first time.  But in the end, I do it, motivated by how much better off I am by being willing and able to.

    Of course, travelling can get tiring, which leads to the most critical belief that- THANKFULLY- I ended up getting wrong…

  • I WILL NEVER BE ABLE TO LIVE ON MY OWN AGAIN!  This is the big one, hence the CAPITAL LETTERS and exclamation point!  It has been, by far, the most important step I’ve taken since the accident.  Also, finding a place to live that is both near the train, AND near a downtown area with enough to do so I don’t have to travel too often, has made life convenient and manageable.  It’s also far enough from the city that I can afford it, getting me back to a life where I can live within my means- and not a moment too soon.


So What’s Left?

Quite a bit, actually, and I’ve been writing for nearly a week (seriously), so I’m going to wrap this up quickly-

  • How much of a social life can I expect to have?  I sort of covered this with the dating topic, but it expands beyond that.  I don’t really know how much I can handle with parties, large groups of people, stimulation, etc..  I do know that I’m fairly comfortable at events involving TBI support, so there’s room for improvement here.  I just don’t know how much.  The same goes for events like weddings, funerals, family get-togethers- which are often weddings and funerals- and so forth.
  • How can I handle being overwhelmed by memories?  Any song, place, or even person that reminds me of my previous life is potentially a trigger.  Scratch that- it’s a LANDMINE!  I need to work on this.
  • Can I ever be happy again?  My depression varies widely, which means there’s hope that my mood can improve.  But I think it’s reasonable for me to say that I’ll never feel exactly the way I felt before.  I just need to learn how to be okay with it.
  • How can I re-establish relationships with people I knew from before?  This is especially important for my niece and nephew, and also extends to the other children in my family, who NEVER knew me before.
  • How much can I travel for fun, if at all?  This isn’t about not being able to drive- it’s about my capacity to handle traveling, beyond what is required.  So far, I haven’t left the NY/NJ area since moving here.  There really isn’t much to be gained in going on vacations, if over-stimulation is just going to cause more anxiety.  After all, the whole point of vacations is to RELAX!
  • Will I ever be able to have any kind of career again?  No further elaboration required.

    Finally- and this is last for a reason-

  • Vegas or bust?!  My west coast dream was stolen from me, so I’m creating a new one.  This one is going to take a while to answer- at least, it will if things go right– but when I’m retirement age (55, but who’s counting), I plan on living out my life in a place where I don’t have to ever wear a winter coat during the day again.

Okay, that’s two end-of-year blog posts that I didn’t finish up until January 2nd.  I think that’s enough blogging for now.

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