Redefining “Uncle Scott”

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May 2017, spending time with my niece and nephew on Long Island during a visit from California. Little did any of us know at the time, it would be my last one.

(Originally posted March 21, 2019 11:55 PM)

A little over a month ago, I visited my sister’s family, who were staying at the Sheraton Inn, about a half hour from where I currently live.  Standing outside of the hotel, I found myself holding back tears, as I was flooded with a wonderful yet bitter memory.  At a certain point, I decided to stop holding them back, and it didn’t matter to me who saw- if anything, I was glad to show the world just how much emotional pain I was feeling!  The last time I had been there was also during a family visit, back in 2016, when we were celebrating the fact that my niece, Ilana, was well enough to travel after her brain injury.  I recall at the time thinking how great it was that not only was she still alive slightly more than a year later, but she was making great progress.  I was reasonably sure that the worst for her, myself, and my family was behind us.  Little did I realize that in slightly more than another year, the worst for me was still to come.  Standing in the front of this very same hotel in 2019 was a cruel reminder of that.

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Stock photo of the Sheraton in Parsippany, NJ

One of the hardest parts about dealing with my brain injury is when I need to confront my “previous life”. Although I have worked hard to create a new life for myself, and have had lots of help along the way, I can’t escape the fact that the first 40 years are still a big part of who I am today. The problem is that it doesn’t FEEL that way. For example, I often have trouble listening to music I like, for the simple reason that it reminds me of who I used to be. But, like so many other aspects of my life, I’ve worked on trying to overcome it. But “working on” listening to music is pretty easy, insofar as the effort I need to put into it- I just have to hit play! Dealing with people I knew before is much more complex, which is why I struggle so much with Ilana, along with her brother, Evan.

I’ve written and talked about them a lot, and it’s not hard to explain why- quite simply, being an uncle was the most important aspect of my life. Not coincidentally, it was also my most successful. While living on the other side of the country, the time I spent with them averaged out to roughly one month a year (slightly more than that the year Ilana got sick), but I made sure that it counted. And I was happy about the fact that they were finally old enough to come out and visit ME in California. My life, like pretty much everyone else’s, has had its fair shares of ups and downs, but there weren’t any “downs” with the kids. Sure, it was incredibly painful to watch Ilana get sick, but it also gave me a chance to really contribute to her recovery, letting her know that I’d always be there for her…until I wasn’t.

The most bitter irony of what happened to me- and believe me, there are quite a few to choose from- is that I don’t see Ilana and Evan very much anymore. While the commute has been cut down well over 2,500 miles, it’s just too much for me to handle. The travelling is bad enough, but how do I interact with them, even when I do get a chance to see them?  They’re old enough to understand that something has happened to me, but not old enough to understand what happened to me.   I’m also upset- furious, actually- that I had this special relationship with them, which I doubt now they will even be able to remember.  And even if they do remember it, they’re certainly too young for it to be their main thought about me.  Hell, I even worry that the adults in my family won’t remember me for who I used to be!  (I don’t worry about my “pre-TBI friends” nearly as much, only because as of this post, I don’t ever see any of them.)

To add insult to injury, I can’t talk about any of this with the kids, because they’re…well, kids!  I can barely show any negative emotion, as they are too vulnerable themselves. It’s bad enough that I can’t be there for them, but the thought that I might actually be a DESTRUCTIVE force in their life disgusts me, and was never something I would have even considered in my worst fears.

The final obstacle that makes this challenge so unique is time. All other things- commuting, working, socializing, etc.- can happen at whatever pace is appropriate. With the kids, every day that I struggle with this is a day of their childhood that I miss out on.  Sometimes, I find this hard to explain to all the parents out there just how painful this is for me, because I’m “just” an uncle. For the record, I recognize that I can’t comprehend just how difficult being a parent is. But I can also claim that to have such strong bonds broken by an outside force- literally, and completely beyond my control- is something that not even most PARENTS can understand, outside of the ones who have experienced it.

It’s worth acknowledging that someone doesn’t need to have a brain injury- or ANY type of trauma, for that matter- to have a drastic change in a relationship with someone else. This is especially true with kids- they grow up, their sense of humor changes, they want to spend less time with their family and more with their friends- etc.. The difference in my case is that I, the adult, am the one who changed the nature of this relationship with the kids- not through the natural course of time, and certainly not for the better.  So far, I’ve learned to compensate in various aspects of life, which I previously did not think I’d be able to do. But rebuilding relationships with ANYONE, let alone two little kids too young to understand all this, is more challenging than anything I’ve done so far. Will I be able to do it, in a way that I can accept? Honestly, at this point, I just don’t know.

At least I’ll get another chance in a few days, heading up to Albany, to visit the kids and the rest of my family.  Funny that I can’t go to relatively nearby Long Island, because the memories are too overwhelming, while Albany- which I believe is somewhere in the Arctic Circle- is fair game.  (Also, Amtrak is much nicer than the Long Island Railroad.)  It certainly won’t be easy, but given that I have no history there, it will hopefully be manageable.  Either way, there’s only one way to find out.

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Nightmare On Hamilton Street*

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You Don’t Need Freddie Krueger To Be Afraid Of Falling Asleep

This blog post is going to start with the world’s most boring confession- I have unresolved issues from my past. Whoop-dee-doo, right? Who doesn’t? I mean, I didn’t have the happiest middle class upbringing in America, but I was fortunate enough to HAVE a middle class upbringing in America. Besides, I didn’t have anything significant enough to stop me from becoming a pretty successful adult. That is, until I suffered a brain injury.

I don’t understand how the whole “trauma” things works, really. I can’t pretend I didn’t occasionally dwell on the past, particularly if something in the present triggered my memory. But I’d quickly snap out of it, reminding myself that, as Steven Tyler once said- ironically enough, on Aerosmith’s very first album- “the past is gone.” As it turns out, the past isn’t so much gone, as it is stored away somewhere. It’s almost as though all those unresolved issues were contained in a dry powder keg, and the concussion was like lighting a match to it. It all hit me at once, and I don’t really know how to deal with it- let alone the NEW problems that have sprung up since.

The good news is that I’ve gradually been able to create a new life for myself, with lots of help from others. (I’ve documented that in previous posts.) As such, I don’t HAVE to constantly dwell in these issues from the past as much, because I’m too busy trying to build a present and future. However, with a brain injury, I can only focus so much, before my mind takes me elsewhere. This was a very serious problem early on, when I would have thoughts that seemed to be coming from other places. It’s hard to explain, but it was kind of similar to hearing voices, without ACTUALLY hearing them. (In other words, they existed in thought only.) As of this post, they’ve been contained to my dreams- and therein lies the problem.

Facing the world with a chronic “fight-or-flight” response is hard enough as it is, without starting the day in a state of terror- but try telling that to my subconscious! In recent months, I have been reminded of tension within my family, insecurities at school, leaving my life in California without warning, as well as accidents besides my concussion- which, incidentally, I don’t remember at all, and a variety of other seemingly long forgotten issues. Lest I wallow too much in the distant past, my subconscious- which conjures up far more creative scenarios than I ever could do while awake- mixes in my newfound fear of long lines at the grocery store, suburban sprawl, Uber drivers with a poor sense of direction, my continued shock at the condition I find myself in, and my fear and sadness at trying to rebuild my relationships within my family.  In one dream, my subconscious even managed to incorporate real life physical sensations- specifically, the fact that I drank way too much water the night before, but couldn’t figure out why I wasn’t feeling any relief when I…well, click here, if you must. (Of course, this beats the alternative of FEELING relief during the dream. Too much info? Let’s move on…)

As for the dreams themselves, I can’t remember ALL of them. Sometimes, I’ll wake up and say, “Oh! I have to write that down…but then I’d have to get out of bed. Eh, it’s okay. I’ll remember it later…” and then I don’t. But no matter, because there’s plenty to work with here, including-

-Throwing my niece and nephew in the air like I used to, then wondering why it feels so empty.

-Selling my dad’s house in Pennsylvania, except that the house is off PA-926 in the dream, whereas it was off of PA-52 in reality. (Also, that we sold that house over twenty years ago.)

-Deciding whether to study for a test that I totally forgot about, or playing guitar.

-Going to high school with a brain injury, wondering if the other kids will show mercy, given the circumstances.

-Watching some fictional vintage video of Yogi Berra in his later years, talking about what it was like to be on the Yankees’ version of Mount Rushmore. (Unfortunately for Yogi, this would only be true in real life if Mount Rushmore added another spot- the ACTUAL Yankee version includes Babe Ruth, Lou Gehrig, Joe Dimaggio, and Mickey Mantle.)

-Dating more than one woman at the same time- LITERALLY, at the same time, ala Peter Brady (https://www.imdb.com/title/tt0531162/)- which ultimately led to the women (ALL of them) to be either bored or angry with me. Making this even more interesting, I actually remembered the episode of the Brady Bunch IN THE DREAM, although I probably haven’t given it more than 30 seconds of conscious thought in over 30 years, outside of the one time they mocked in on South Park- and I hadn’t seen THAT episode in about 20 years, either.

-Mark Hamill, somehow starring as the Joker in the 1968 version of Batman starring Adam West (yes, I actually remembered the year in my dream), except he went on an ACTUAL murdering spree. (And you thought that version was too campy!)  And, last but not least…

-Watching a replay of the 1985 World Series, where the Cardinals famously lost on a bad call- actually true in real life- and Peewee Herman tried to get a sacrifice bunt down.  (Hey, at least I didn’t dream he was trying to hit a home run, because THAT would have been weird!)

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Peewee Herman’s actual uniform in 1985

Where does all this come from? Well, I can’t really explain the last two, but the rest actually do make a fair amount of sense, believe it or not. The one about my niece and nephew doesn’t really require Sigmund Freud’s interpretation, although it DOES require lots of therapy. The sale of my dad’s house comes from a combination of the past being unleashed, along with my incredible regret at selling my condo in LA a couple of years back, which I still suspect may have partially led to my TBI, ala “the butterfly effect”. Also interesting is “926”, a number that Ilana found humor in, not long before my accident. (She finds humor in lots of bizarre things, which is probably why she thought I was so funny.)

The guitar/homework one might have more than meets the eye. On one hand, it’s a clear throwback to the fact that I never really got to be the guitar player I wanted to be in high school, partly because my time management left something to be desired, even by teenage standards. (There were other factors, which I won’t get into here.) But also, there’s a much more recent story- as I was getting ready to sell my condo, I realized that most of what I owned- which wasn’t all that much to begin with- was junk. One exception was my guitar, which I had barely played for the few years that I had owned it. So I picked it up while watching TV (one of the few OTHER items I didn’t need to throw out), and was surprised by how motivated I felt. I barely missed a day of practice for nearly eight months…until my life came crashing down. When I tried picking it up a few months after my accident, I was disgusted not only by my regression, but just how futile it all seemed.

I figured that I’d picked up the guitar for the last time. Then, last October- almost exactly two years after I’d started playing regularly again- I started playing regularly again…AGAIN! Now that I’m well past my pre-TBI record, currently at 466 notes/minute and climbing (500 if I REALLY want my hand to hurt), I guess I have some sort of fear it will all fall apart again, almost like my guitar playing is linked to my accident. It doesn’t make a lot of sense, but then again, neither does Mark Hamill going on an ACTUAL killing spree in a 60’s TV sitcom.

So what else…

The high school and brain injury is past fears meet present fears. That ones’s pretty straightforward.

The Yogi Berra one actually makes sense to me. Not long before turning 40 and not long after my niece’s illness, I became obsessed with mortality. Then, Yogi Berra died. I saw what an incredible life he led, and started to chart my progress in life, with where he was at when he was my age. That didn’t last too long, because after my injury, I have a pretty different view of my own mortality. I’ll save that one for another post, at another time.

Dating? Well…I don’t drive anymore. I don’t drink anymore. My social outings are restricted, in both time and location. I don’t make a full salary anymore.  I’m pleasantly surprised that I’m able to socialize AT ALL, but like so many other things, it’s not the same. And that can be pretty upsetting. My subconscious seems to have taken notice.

Mark Hamill, the sixties sitcom star/murderer, and Peewee Herman the baseball player? I’ll leave that to others.

The bottom line is that just like the famous line, “In space, no one can hear you scream,” the same goes for dreams. No matter how many times people assure me that “I’m not alone,” the fact of the matter is, I am VERY alone- quite literally- when I’m asleep. Snitching on my mind when I’m not in control of it seems like as good of a way as any to deal with it.

 

*Officially speaking, my address is not Hamilton Street, but it just has a better ring to it than “Nightmare On Veterans Memorial Drive East”

2018 Comes To A Close, And I’m Still Here!

…honestly, it wasn’t nearly as close of a call as the title of this blog post would indicate. However, as the guy who lived through it, there were times where it sure felt that way, especially early on.

Before looking at the “highlights” of 2018, it’s worth taking inventory of two snapshots in time- the middle of 2017 (weeks before my accident), and the end of 2017, just to get a sense of my rise, fall, and partial rise again-

June 30th, 2017

Living large in southern California, I was getting ready to prove that life does, in fact, begin at 40.  Generally blending in the background at my job throughout A-Rod’s entire tenure with the Yankees, I suddenly and unexpectedly found my profile increasing.  I had become more confident in my abilities, even giving my first public presentation, something that went over far better than I could have imagined.   I’d also expanded outside of the software area altogether, helping to conduct interviews, and host recruitment events on college campuses.  Whereas most people loathe going to their daily jobs, I relished it.

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At my first AMA Los Angeles event, I met this random guy.  My second AMA event, an LA Galaxy soccer game, was the last social event I would ever attend before my accident.

There was plenty going on outside of the office, too.  I was going to see Iron Maiden in a few days, and had Metallica tickets for a few weeks later.  And speaking of loud music, I had started getting serious about my guitar playing, for the first time since I was a teenager, with much better results this time around.  (Forty year olds tend to have more discipline than fourteen year olds.)  I had also, somewhat ironically, enrolled in an “Under 40” tennis league designed for socialization among the “younger” crowd, proving I could enter a new phase in life, while still mingling with those who hadn’t quite gotten there yet.  (In other words- https://www.youtube.com/watch?v=98k05_bM2e4).  Running 5Ks was a regular occurrence.  I had started doing more hiking and sightseeing.  (Click here for proof.)  I was getting ready to attempt a second career as a voice actor.  I’d also recently become a member of AMA Los Angeles, a great way to network with others.  Friendly but introverted and somewhat misanthropic throughout most of my life, I had gradually learned to be more outgoing.  Much to my surprise, I was kind of enjoying it!

Last but not least, my sister and her family had just come into town for a visit.  It was only the second time they’d done so, and first in six years, when my niece was just a toddler, and my nephew hadn’t even been born yet.  But I assumed this could potentially be the start of a regular occurrence, now that the kids were older- still very young, but old enough to travel and appreciate it.  We ended up going to several enjoyable tourist traps throughout LA, and spent a fair amount of time jumping maniacally on a trampoline.  (To this day, I haven’t seen the pictures of that.)  I assumed this trip would be the beginning of a somewhat regular occurrence.

Oh, one more thing…I was looking for a new, less expensive place to live, so I could eventually save up enough for a condo in Malibu, or some other equally nice place, to live in for the bulk of my life.  Whatever money I had leftover would be saved for my sister’s kids.  (Selling my condo a few months earlier was, IMO, indirectly but largely responsible for my TBI in the first place, but that’s for another post, another time.)  The point is, I had it all planned out.

December 31st, 2017

After two brief but tumultuous stints living with family members in the NY/NJ area, and an equal number of trips to psychiatric hospitals, I found myself in an assisted living facility, primarily intended for developmentally challenged adults.  While a few symptoms from my brain injury had started to subside ever so slightly, most had not, and the constant swirl, tremors and sensory overload in my head were unbearable.  Although I had met some people who were sympathetic, along with a few others who I’d briefly connected with to a limited degree, I hadn’t really made a single friend since my accident, as I had almost no desire to socialize.  On a related note, I intentionally stayed out of touch with all my old friends, as I was ashamed of myself and disgusted with the situation.  My cousin was about to have a baby, and I specifically told my mother I didn’t want to hear a word about it, as I was totally detached from my family.  I even- especially, in fact- wanted nothing to do with my niece and nephew, as time that I spent with them since the accident had been a disaster, likely responsible for accelerating my first trip to the psychiatric hospital.  (Although honestly, I would have ended up there, anyway.)

I never made it to the Metallica concert.  In fact, I could barely handle my living facility’s Christmas music show, which I sat way in the back for, wearing earplugs.  And forget about my career, let alone a second one!  Although I still officially had my job, it was, essentially, on paper only.  I had been thousands of miles away from the office for months, with seemingly no realistic prospect of returning.

I could no longer drive.  Walking briskly was too much for me, let alone running or playing tennis.  I had tried playing guitar a few times since the accident and I hated it, so I just gave it up altogether.  The only regular structure in my life was an outpatient program for depressed people in Princeton, NJ.  Many, if not most, of these people had very serious problems, but I can say with certainty that I was the only one whose problems had all developed just a few months earlier, completely out of the blue.  Even some of the other patients, dealing with the trauma of their own lives, were horrified at the abruptness of my situation.

Financially, everything was also going down the drain.  All that had happened was costing me and my family tens of thousands of dollars in a matter of MONTHS, with no end in sight.  Nearly two decades of saving for an enjoyable life, which I had carefully planned for, had seemingly been destroyed, along with everything else, in a freak accident that occurred in a few SECONDS!  Even though I’d done a pretty good job of saving money, I had done so on the assumption I’d be working fulltime until at least age 60, not 40!

It all seemed so unfair.  It all was so unfair!  I mean, life is unfair for most of us, to one extent or another.  But this was something like three standard deviations of unfair.  Put this on top of what had happened to my niece barely more than two years earlier, and it was about SIX standard deviations of unfair!

This Isn’t Hollywood

The whole thing felt like a Tom Cruise movie on steroids.  You know, the one that opens with him-

1) …enjoying his devil-may-care life, with a cockiness that has the audience just KNOWING he’s about to get his comeuppance.

2) He gets his comeuppance.

3) He emerges as a better man for it.

4) The credits roll.

Unfortunately, life is not a movie.  For one thing, I didn’t really need my comeuppance- I had already dealt with plenty throughout my life, and appreciated how good I had it, while I did have it.  The only thing I was really smug about was the weather- and pretty much EVERYONE in California is smug about the weather!  But why shouldn’t we be, with the prices we pay to enjoy it??  (Most New Yorkers do have roughly the same cost of living, though.  Don’t ask me why.)

I will say that the experience has, in certain respects, made me a better man.  I no longer get nearly as worked up about trivial things.  In fact, I kind of laugh at my old self, for freaking out about the smallest amount of male patterned baldness that I noticed when I was 27 years old.  How’s this for “karmic justice”- that’s the spot where I sustained my head injury!  Maybe it was a real issue, as I sure could’ve used some extra padding.  But anyway…here’s where I’m at now…

December 31st, 2018

Although life is still considerably closer in quality to December 31st, 2017 than to June 30th, 2017, it’s also come along much further than I ever could have imagined a year earlier.  Enough of my symptoms subsided early on, which eventually contributed to helping me to move forward, although it took a few extra months for me to see it.

Along the way, I ended up making a fair amount of new friends, while reconnecting with old ones through Facebook.  (Cutting down on social media, which I had largely done for nearly a year, is often a good thing, but not in this case.)  I opened up to my family again, and although it isn’t the same, I am slowly doing my best to reconnect under the new circumstances.  I even met my cousin’s baby, after shunning the thought of her existence to protect my own sanity, not more than a year earlier.  I don’t see my niece and nephew very often, and when I do, it increases my anxiety.  But with help, I’m learning to cope with it, and it also helps immensely to have a friend there, to help facilitate the interaction.  And hey- so far, no new trips to a mental hospital!  *knock on wood*

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For the Gen-Zers in my family, “pre-TBI Uncle Scott” will be a distant memory, or no memory at all.  That’s why I need to be the best “post-TBI Uncle Scott” that I can be.

There’s no cure for brain injury, and there probably never will be.  What there are, though, are networks and organizations designed to help survivors deal with the myriad of challenges they face.  I have capitalized on this, and plan on becoming an advocate, to the extent that I can be.  I had proven to be an effective public speaker at my job, so I figure I can still be.  Plus, I need to fill my day with activities that I can handle.  And speaking of things that I can handle, there were some pleasant surprises throughout the year, as I learned that I was more capable of doing certain things than I thought.  (Read the “I Could Be Wrong” section of my other end-of-year blog post for more details. https://tbi-online.com/2019/01/02/right-or-wrong/)

So that’s where I’m at now, and if I had been typing any longer, I’d probably have to start putting together a review for 2019.  But all I can say looking forward is that this isn’t a linear process- there will be a period of time where I feel like I’m going in the wrong direction.  It could be any given week, or day, or even hour.  And while that’s true for anyone, it’s a particularly scary thought for me, given where I’ve been.  But seeing how much better my life was at the end of 2018 than I ever imagined it would be at the beginning of 2018, I’m a little bit more open-minded- dare I say optimistic– on the prospects of a better year ahead.   I’m not expecting it, but I’m allowing for the possibility of it.  And just being open to the possibility of an improvement, when just a year earlier I swore that there never could be, is an improvement in and of itself.

“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.

Sixteen Months After Impact, The Glass Is A Third Full

Considering how things had been going, my life has recently been filled with relatively, as well as much needed, good news.  I’ve now been living on my own for a month- something that was absolutely unthinkable as recently as early this summer- in my latest adopted hometown of Somerville, NJ.  While no substitute for the southern California weather and environment that I enjoyed for nearly 20 years, it’s a quaint town, with nearly everything I need in walking distance.  (Given my condition, the enormous ShopRite is kind of terrifying, though.  Luckily, there are enough takeout places to keep me from starving.)  Even better, the building I live in, The Colbalt, has barely been in New Jersey longer than I have!  It’s a friendly, somewhat vibrant place to live, but also quiet, with occasional social events for the residents.  There’s even a nice club room with big screen TVs, a pool table, and WiFi- which, incidentally, is where I’m writing this post right now.  The first week was very difficult, and it does get kind of isolating at times- which used to be just about my favorite state to be in pre-TBI, but now is a little dangerous.  So I monitor that pretty carefully.

somerville
Full disclosure- I didn’t take this picture

I’ve also been getting involved in non-profit volunteering (office work, database entry- stuff that’s low stress but plays to my strengths), while taking more of an active role in the brain injury community- I’ve always had strong thoughts and opinions about just about everything, so why not get more involved into this new world that I unwillingly but unmistakably got thrown into?  Also, much to my surprise, I’ve found myself playing guitar every day for nearly two months.  I swore I was never going to pick it up again, as every time I did for about the first year or so post-injury, it just made me sad and angry to do so.  But I recognized my desperate need for a sustainable hobby, so I figured why not go with what I enjoyed doing before all this?  It’s not the same as it used to be- almost nothing is these days- but it has proven to be fulfilling, once I got over my initial reminders of how things were before all of this.  My pre-TBI record was 432 notes/per minute, I’m currently at 426.

And speaking of how things were, I want to go on record to say that none of this makes me feel any closer to being okay with what happened to me.  I had a lot of goals and dreams that I was just starting to realize at age 40- presumably close to the halfway point- which were taken away from me, cruelly and without warning.  Many, perhaps most people in their lives, experience SOME tragic event that alters their life at some point, and the older you’re around, the more likely you are to go through it.  In fact, I had already done so myself in 2015, when my then-five year old niece suffered through a brain injury that turned out to be life-altering for herself, as well as those around her.  (Blog link here.)  But even for those who HAVE suffered- and I completely recognize that there are people far worse off than I am- few have had to start their lives over in almost every imaginable way, right at its pinnacle, forced to move to other side of the country, with no contingency plan whatsoever.  Not only was I facing NEW challenges, but I was shocked- horrified, even- to face issues that I thought I’d left behind decades ago.  In hindsight, I was fortunate enough to have a family that did their best to improvise, eventually leading to new people and places that could help me try to build something meaningful with my life.  (I can’t say enough nice things about Mount Bethel Village, Opportunity Project, The Brain Injury Alliance of New Jersey, as well as all of the doctors, therapists, and new friends that have helped keep me going.)  After sixteen months, I am starting to at least see the POSSIBILITY that it might be starting to come into place.  But I’m also holding my breathe, as it all plays out in real time, right in front of me.

And then there’s my family.  It’s hard to explain, but being a “different person” makes it hard for me to be around them, the way I used to be.  But we are adjusting with “creative arrangements” to help make it easier for visitations.  We just need to now extend it to my aforementioned niece, Ilana, and nephew, Evan, who were the most important part of my pre-TBI life, and for various reasons- most of which has to do with my emotional struggles- have been relegated to cameo roles.  But they will be here for a visit at the end of this month, so hopefully we can use the visit to build on something more frequent and lasting.

So that’s about all I have for original content, but I did find a couple of links that share some rather painful experiences, from a couple of young women who suffer from chronic illness.  While different from a brain injury, some of their frustrations are very familiar to me.  I don’t wish this kind of fear, anger, and sadness on ANYONE, but it’s sort of comforting to know that there are others who go through the kind of situations that are seemingly impossible explain, to those who have never experienced it.  I copied the passages that I felt related to me, and boldfaced the ones that REALLY related me..

 

https://themighty.com/2016/04/social-media-and-invisible-chronic-illness-symptoms

“…All of these symptoms and many more are ones that can’t be seen in a photograph. Just because I did something fun or pleasurable doesn’t mean I’m well and I didn’t pay for that activity later. A photo posted on social media doesn’t tell the entire story. It only captured one second of that day. Looks can easily fool you when the person is facing challenges from invisible illnesses.

When I hear the line, “You’re doing a lot so you must be feeling better,” a strong wave of anger floods my body, and I just want to scream back, “But you have no idea!” I know the person means well by their comment, but it’s still very hurtful. It reminds me how alone I really am in this constant battle against my own body and reinforces how others really don’t understand the complexity of my situation and the depth of what I endure each day…”

https://themighty.com/2018/11/grieving-mourning-old-you-chronic-illness/

Each day, I find my mind going back to the same thing. I keep wondering why, after all of this time, I still am in mourning of my pre-sick self. Maybe I’m sad because I never got to say goodbye to who I used to be; I was so happy and had goals I wanted to achieve. Just a year or so before, I had challenged myself to run, and I came to find that running made me feel at my best and was a form of therapy for myself. As if in an instant, any happiness drained itself from my body and my running came to a halt. I also quit my job because I couldn’t handle the stress and pain my body was being put through and I had severe depression weighing me down and telling me I needed to choose myself or possibly not be here anymore.

Once I couldn’t work anymore, I felt so disappointed in myself and to this day, I want so badly to contribute to society. I want to not wake up each day thinking that my life lacks purpose. To say I had hopes and dreams is an understatement. I saw a future filled with traveling and finding my life’s purpose. Instead, I lost my happiness from depression and any ounce of pride I ever felt inside had left me. When your thoughts switch from thinking about one day buying a house with your significant other to just wanting to wake up one day and feel a little less pain, it makes you realize that you just really needed a warning that this was to come so you could have been more prepared.

With the help of a therapist, I have been through the cycle of grieving and accepting my chronic illnesses multiple times, but I don’t know that I’ll ever be completely OK with my situation. I’ve actually come to a point where I don’t even tell people anymore how I’m actually feeling when they ask because I feel like a broken record and a broken soul that can never be fixed. I have accepted that no matter how many times you try to tell others what you are feeling and experiencing, they may never truly understand. You may lose important people in your life as you have to say “no” to many outings, but those who honestly are sympathetic to your situation will stick around.”

I’ve been lucky enough to not lose anybody ’til this point- quite the contrary.  Hopefully, I will never have to.

Living With TBI For A Year And Counting- Still Trying To Figure It Out

Some people think that I’ve been too negative. The truth is, I’ve been HOLDING BACK just how devastating this has been for me.  Seriously- you don’t end up being hospitalized 4 times in 4 months, twice psychiatrically, because of trouble coping, or “just” depression, especially with no prior mental health issues.  Whatever improvement everyone has seen- real or perceived- the inner-darkness that took over my soul, the instant that I regained consciousness on August 1st, 2017, has not lifted.  I led a truly blessed life for 40 years, and though it had its problems early on, it had been getting better and better with each passing day.  By the time I got there, I RELISHED turning 40!  2017 was shaping up to be the best year of my life.  Then, the accident happened, and with slight variation here and there, every day since has been close to a tie for second worst.  (The worst would be April 30th, 2015, the day I found out that my niece had an acquired brain injury. Thankfully, HER spirit has not been broken.)

In spite of this setback, and in spite of the darkness of my mood and of this blog post, I will continue to fight through this, to the best of my ability.  I do acknowledge my luck with all the wonderful people in my life, and those who have come in my life. (More on that in a bit.)  But there is one thing that has bothered me at times, and now is the time to come and say it in boldface- THERE ARE TIMES WHEN I FEEL THAT THE FEARS I HAVE ABOUT MYSELF ARE NOT TAKEN SERIOUSLY.  This goes back to the CAUSE of the accident- an inattentive doctor who decided, after giving me the most basic examination imaginable, that I had “flu-like symptoms”.  Within 24 hours, I collapsed on the floor, hitting my head on the edge of a table, and having my life change forever. It turned out that I actually had a severe case of pneumonia.  (When informed of this, the doctor replied that he didn’t recall treating me.  I’m not surprised, seeing how he barely did.)

Now, don’t get me wrong.  That doesn’t mean I believe I’m always right about myself.  I know there are aspects of this that have taken a few turns for the better, fortunately, which I didn’t anticipate.  But at the core of my altered soul, I knew- KNEW- that the life I had been living, and the that person I was, had changed forever, the instant that I regained consciousness- and not for the better.  I did not know exactly how, but I knew that it was not an “ordinary” concussion, regardless of what I was told by those who never lived through one, from the day I entered Marina Del Rey hospital until the present day.  Don’t ask me how- unless you’ve been through what I’ve been through, I’d rather not be judged on this belief. It’s your prerogative if you do, though.

Having said all this…I KNOW THERE’S HOPE.  I KNOW THINGS CAN CHANGE. But the feelings and convictions I have about myself and the challenges I will likely face FOR THE REST OF MY LIFE are very real.  The more people can understand this, the less alone I will feel, and the more it could potentially help me.