Identity
In between posts, I keep having weird one-off thoughts that make me think, "Hey, I should put this in the blog!" before promptly forgetting them. One of these days I'll get around to carrying a notepad in my pocket to jot these down before the next shiny object grabs my attention. One of these days I'll also get around to making this blog look less like a LiveJournal.
I've been thinking lately about how identity is the sum of the interplay between internal belief about oneself, internal and external challenges to that belief, and changes to that belief that arise as a result of those challenges. The cycle repeats over and over. Nine months after my Tourette's diagnosis, I'm still going through smaller, daily versions of this cycle while experiencing a longer, overarching version of it that is slowly making changes to how I view myself and how I view others.
The small daily cycles mostly have to do with my relationships at home, with my family, with my friends, and with co-workers. My wife is a freaking rock star in every sense of that phrase absent that she does not perform rock concerts in sold out arenas. She loved and supported me before my diagnosis, in the immediate aftermath, and she still does every day. She sets a high standard for everyone else. My parents, brothers, and their spouses have been similarly supportive. I think they're happy to see my embracing something they've all known on some level that I've struggled with for a long time. My friends have been chill as well. I've only told mayyyyyyyyyyybe 7-8 co-workers and honestly, they way they kind of glossed over it was a huge relief. A few had questions and I mostly got "Dude, I had no idea."
Two months ago, I took the step of self-identifying to our building's HR guy. I decided to do it (and a lot more) after a really bad experience with meds that scared the Sweet Baby Jesus out of me. I decided to get off meds and have been too chicken to try anything else since. Being off medicine made me realize that if I was going to be content to tic, then I had to start to integrate the idea of being a person with Tourette's Syndrome into my sense of identity instead of trying to bury it. I decided to tell this guy (we'll call him Mike) in case anyone saw one of my tics and thought it was an intentional gesture or look meant for them. That has been and will continue to be my nightmare. I consider telling Mike to have been preemptively waking myself up from it. Mike was impeccably professional and let me know that he and the rest of our company's HR department were at my disposal. I was officially a person with TS in the place where I spend a significant portion of my waking life.
These are all examples of the small cycle of identity. The reactions of the above-mentioned people ranged from love to professional support to indifferent acceptance. They ranged from brief conversations to ongoing dialogues that continue to shape my identity and, to an extent, theirs. My wife in particular has taken a deep dive into the TS community, for which I am eternally grateful. These reactions, along with a thousand other things, are feeding into the ongoing, long-form changes to how I identify myself.
I don't remember ever being a really talkative person. As a kid, I DO remember going down Rt. 22 in NJ and reading the name of every single store out loud. I read (past tense) and read (present tense) a lot. I always liked and still like video games. I feel like my brain is an interesting place for me to spend time. Since being diagnosed with Tourette's, I've spent a lot of (too much) time playing with the implications in my head.
For darn near 40 years, I was just weird. That's all it was to me, really. I just thought/knew I was a little different. No one else I knew or ever saw was dealing with constant involuntary movements and noises. I didn't know how a Tourette's brain can be different than someone else's or that comorbids were a thing. To be diagnosed at an advanced age was a bit of a surprise and I think my initial response wasn't so helpful. I kind of figured that since I'd made it this long, there was no real need for me to make a big deal of it or think about it too much. The doc prescribed me some medicine and we thought maybe that would help, but I didn't think it was worth the time to really turn it over and examine it in my head. One bad medicine trip later, that changed.
So who am I now? Am I still just me? Do I want to be treated differently now that I know, or do I want everyone to go about their relationships with me as usual? Am I an advocate for people with Tourette's? I'd like to be, but at the same time the thought of exposing myself like that scares me. I don't expect to ever have answers to these questions, not really. Not real ones, anyway. I'm glad I'm reaching out to communities of people like me (us?) online, and I hope more people do the same. I've read that something like 1 in 100 people in the US has TS or a chronic tic disorder. Even if that stat is off by a whole order of magnitude, there should be something like 327,500 of us in the US alone. I've only encountered a fraction of a fraction of a fraction of that so far. I'd hate to think that there are actual hundreds of thousands of people just in my own country who are dealing with this condition alone, silently, like I did for a long time. I guess that the biggest way my TS has changed my identity is that I'm not a person who suffers with this alone anymore. I'd like to be able to help make more people feel the same way.
I've been thinking lately about how identity is the sum of the interplay between internal belief about oneself, internal and external challenges to that belief, and changes to that belief that arise as a result of those challenges. The cycle repeats over and over. Nine months after my Tourette's diagnosis, I'm still going through smaller, daily versions of this cycle while experiencing a longer, overarching version of it that is slowly making changes to how I view myself and how I view others.
The small daily cycles mostly have to do with my relationships at home, with my family, with my friends, and with co-workers. My wife is a freaking rock star in every sense of that phrase absent that she does not perform rock concerts in sold out arenas. She loved and supported me before my diagnosis, in the immediate aftermath, and she still does every day. She sets a high standard for everyone else. My parents, brothers, and their spouses have been similarly supportive. I think they're happy to see my embracing something they've all known on some level that I've struggled with for a long time. My friends have been chill as well. I've only told mayyyyyyyyyyybe 7-8 co-workers and honestly, they way they kind of glossed over it was a huge relief. A few had questions and I mostly got "Dude, I had no idea."
Two months ago, I took the step of self-identifying to our building's HR guy. I decided to do it (and a lot more) after a really bad experience with meds that scared the Sweet Baby Jesus out of me. I decided to get off meds and have been too chicken to try anything else since. Being off medicine made me realize that if I was going to be content to tic, then I had to start to integrate the idea of being a person with Tourette's Syndrome into my sense of identity instead of trying to bury it. I decided to tell this guy (we'll call him Mike) in case anyone saw one of my tics and thought it was an intentional gesture or look meant for them. That has been and will continue to be my nightmare. I consider telling Mike to have been preemptively waking myself up from it. Mike was impeccably professional and let me know that he and the rest of our company's HR department were at my disposal. I was officially a person with TS in the place where I spend a significant portion of my waking life.
These are all examples of the small cycle of identity. The reactions of the above-mentioned people ranged from love to professional support to indifferent acceptance. They ranged from brief conversations to ongoing dialogues that continue to shape my identity and, to an extent, theirs. My wife in particular has taken a deep dive into the TS community, for which I am eternally grateful. These reactions, along with a thousand other things, are feeding into the ongoing, long-form changes to how I identify myself.
I don't remember ever being a really talkative person. As a kid, I DO remember going down Rt. 22 in NJ and reading the name of every single store out loud. I read (past tense) and read (present tense) a lot. I always liked and still like video games. I feel like my brain is an interesting place for me to spend time. Since being diagnosed with Tourette's, I've spent a lot of (too much) time playing with the implications in my head.
For darn near 40 years, I was just weird. That's all it was to me, really. I just thought/knew I was a little different. No one else I knew or ever saw was dealing with constant involuntary movements and noises. I didn't know how a Tourette's brain can be different than someone else's or that comorbids were a thing. To be diagnosed at an advanced age was a bit of a surprise and I think my initial response wasn't so helpful. I kind of figured that since I'd made it this long, there was no real need for me to make a big deal of it or think about it too much. The doc prescribed me some medicine and we thought maybe that would help, but I didn't think it was worth the time to really turn it over and examine it in my head. One bad medicine trip later, that changed.
So who am I now? Am I still just me? Do I want to be treated differently now that I know, or do I want everyone to go about their relationships with me as usual? Am I an advocate for people with Tourette's? I'd like to be, but at the same time the thought of exposing myself like that scares me. I don't expect to ever have answers to these questions, not really. Not real ones, anyway. I'm glad I'm reaching out to communities of people like me (us?) online, and I hope more people do the same. I've read that something like 1 in 100 people in the US has TS or a chronic tic disorder. Even if that stat is off by a whole order of magnitude, there should be something like 327,500 of us in the US alone. I've only encountered a fraction of a fraction of a fraction of that so far. I'd hate to think that there are actual hundreds of thousands of people just in my own country who are dealing with this condition alone, silently, like I did for a long time. I guess that the biggest way my TS has changed my identity is that I'm not a person who suffers with this alone anymore. I'd like to be able to help make more people feel the same way.
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