Redefining “Uncle Scott”

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.

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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