Alone
I hope I never come off as trying to speak for anyone else with Tourette's Syndrome. I'm trying to tell my unique story of life with TS, and I know from Twitter and from listening to the excellent Tourette's Podcast that everyone experiences this condition differently. One common thread I've noticed, however, is the sense of isolation that Tourette's can cause. I'm no stranger to this feeling, so I figured I'd talk a little about it tonight. I'm going to try not to be a huge Debbie Downer on this subject, since I don't want to add to any negative feelings anyone reading this may already have. If you DO feel this way before, during, or after reading this, tweet to me! We can talk about it! The best way to not feel alone is to not be alone.
I may have said something like this before, but I feel like I've always felt a little different in the brain, as if I was having a slightly different experience of being alive and perceiving the world than most people. Not necessarily better or worse, just atypical. I remember as a little kid being so surprised and later so jealous of how easily the other kids in my class interacted with each other. I'd had a few kids comment on or make fun of my tics, and I didn't understand why at first since I didn't realize that everyone's brain wasn't like mine (that might come off as arrogant or self-aggrandizing, and I don't mean for it to. I know I'm not Professor X.). It actually wasn't until other kids first noticed my tics that I realized I was having a different experience of having a mind and a body than they were. I felt ashamed and isolated. I'm reminded of the part of the book of Genesis when Adam and Eve realize they're naked and feel shame, and react by covering themselves up. They put fig leaves over their junk, and I put my tics in a box and started trying to hide them. My tics have changed a lot over the course of my 30-some years with TS, and they were pretty obviously noticeable when
I was young. I had a pronounced head shake, some pretty flagrant arm-flinging, and a quiet hum/moan thing that was a beast during quiet reading time.
As a kid, I think having Tourette's Syndrome (especially undiagnosed, and especially especially in the 80's) put me on a smaller island than most of my peers. Don't get me wrong: I'm pretty sure every kid's head is a weird place and every kid struggles with a sense of belonging. I'm just saying that having a neurological condition that occasionally (frequently) caused me to make involuntary movements and sounds made it worse. I can talk about it now, because I'm 38 and I have a full suite of coping mechanisms available to me (I'm drinking one of them while I type!). As a kid though, man did it suck. The worst part was completely lacking the vocabulary to express how TS made me feel and the fact that no one around me really knew what the heck was going on. I sort of hate knowing that had my outward symptoms been worse, I likely would have been diagnosed with TS and it would have been treated. The tics are, as a lot of people have said before me, just the tip of the TS iceberg. It's a shame that for the most part, it's the symptoms that disrupt other people and make other people uncomfortable that end up being what gets a child diagnosed. Trust me, if you knew the shitshow going on inside this TS patient's brain a lot of the time, you'd take my tics over my headspace any day.
Anyway, back to isolation! I was lucky to have four great guy friends throughout most of my schooling and two girls who lived on our street who ended up being more like family. To these six people, I think my tics were just part of me that they never really questioned. When I met my wife many many many years later, I think she felt the same way. She noticed, but I don't think she cared. I mean she CARES, but she doesn't really care like in a negative way, you know? My brothers have always been the same way. When I told them about my diagnosis earlier this year, they were both spectacularly supportive, as were my parents. The funny thing is that even having the support of all these great people for most of my life, this condition still takes the piss out of me some days. I've had days at work (recently!) when my face has been ticcing so much that I just pound my fist against a table a few times while saying "Goddamint!" under my breath over and over. It's just so exasperating and exhausting to deal with this shit every day sometimes. No matter how much I talk to people about it or how much I type here, I'm still the one locked in this brain with this asshole (yes, I'm anthropomorphizing my TS) all the time. I feel like I'm probably not alone in feeling this way. So what to do, what to do, what to do?
Well, you join a community online. There are Facebook groups galore dedicated to Tourette's that are full of people willing to support you. Sure, they can't get in your brain to double-team your TS with you, but they can be there for you on your bad days and they can be just plain old great friends on your good ones! You can find real life people to meet up with! You can ask another TS patient (or the TS patient you're related to) to explain to you what it feels like in their brain. Honestly talking about it helps me understand it and will hopefully help me accept and control it. I'd bet that might work for other people too. There's a great TS community on Twitter to get involved with. There are some real TS rock starts on there with great advice and who are helping forge a great sense of community. I know that when I feel really isolated, I tend to turn even further inward. That's not a good habit, and it's one I want to break. Having TS already sucks. There's no need for me to make it suck more by dealing with it alone.
I may have said something like this before, but I feel like I've always felt a little different in the brain, as if I was having a slightly different experience of being alive and perceiving the world than most people. Not necessarily better or worse, just atypical. I remember as a little kid being so surprised and later so jealous of how easily the other kids in my class interacted with each other. I'd had a few kids comment on or make fun of my tics, and I didn't understand why at first since I didn't realize that everyone's brain wasn't like mine (that might come off as arrogant or self-aggrandizing, and I don't mean for it to. I know I'm not Professor X.). It actually wasn't until other kids first noticed my tics that I realized I was having a different experience of having a mind and a body than they were. I felt ashamed and isolated. I'm reminded of the part of the book of Genesis when Adam and Eve realize they're naked and feel shame, and react by covering themselves up. They put fig leaves over their junk, and I put my tics in a box and started trying to hide them. My tics have changed a lot over the course of my 30-some years with TS, and they were pretty obviously noticeable when
I was young. I had a pronounced head shake, some pretty flagrant arm-flinging, and a quiet hum/moan thing that was a beast during quiet reading time.
As a kid, I think having Tourette's Syndrome (especially undiagnosed, and especially especially in the 80's) put me on a smaller island than most of my peers. Don't get me wrong: I'm pretty sure every kid's head is a weird place and every kid struggles with a sense of belonging. I'm just saying that having a neurological condition that occasionally (frequently) caused me to make involuntary movements and sounds made it worse. I can talk about it now, because I'm 38 and I have a full suite of coping mechanisms available to me (I'm drinking one of them while I type!). As a kid though, man did it suck. The worst part was completely lacking the vocabulary to express how TS made me feel and the fact that no one around me really knew what the heck was going on. I sort of hate knowing that had my outward symptoms been worse, I likely would have been diagnosed with TS and it would have been treated. The tics are, as a lot of people have said before me, just the tip of the TS iceberg. It's a shame that for the most part, it's the symptoms that disrupt other people and make other people uncomfortable that end up being what gets a child diagnosed. Trust me, if you knew the shitshow going on inside this TS patient's brain a lot of the time, you'd take my tics over my headspace any day.
Anyway, back to isolation! I was lucky to have four great guy friends throughout most of my schooling and two girls who lived on our street who ended up being more like family. To these six people, I think my tics were just part of me that they never really questioned. When I met my wife many many many years later, I think she felt the same way. She noticed, but I don't think she cared. I mean she CARES, but she doesn't really care like in a negative way, you know? My brothers have always been the same way. When I told them about my diagnosis earlier this year, they were both spectacularly supportive, as were my parents. The funny thing is that even having the support of all these great people for most of my life, this condition still takes the piss out of me some days. I've had days at work (recently!) when my face has been ticcing so much that I just pound my fist against a table a few times while saying "Goddamint!" under my breath over and over. It's just so exasperating and exhausting to deal with this shit every day sometimes. No matter how much I talk to people about it or how much I type here, I'm still the one locked in this brain with this asshole (yes, I'm anthropomorphizing my TS) all the time. I feel like I'm probably not alone in feeling this way. So what to do, what to do, what to do?
Well, you join a community online. There are Facebook groups galore dedicated to Tourette's that are full of people willing to support you. Sure, they can't get in your brain to double-team your TS with you, but they can be there for you on your bad days and they can be just plain old great friends on your good ones! You can find real life people to meet up with! You can ask another TS patient (or the TS patient you're related to) to explain to you what it feels like in their brain. Honestly talking about it helps me understand it and will hopefully help me accept and control it. I'd bet that might work for other people too. There's a great TS community on Twitter to get involved with. There are some real TS rock starts on there with great advice and who are helping forge a great sense of community. I know that when I feel really isolated, I tend to turn even further inward. That's not a good habit, and it's one I want to break. Having TS already sucks. There's no need for me to make it suck more by dealing with it alone.
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