I’ve mentioned before that Edward often “let’s loose” when he is at home and is relaxed and comfortable. This is the case for many people with Tourette’s. Usually his tics get louder-especially when he’s mowing the lawn or in the shower. Edward has described his Tourette’s as a sort of “Truth Serum”, in that some of his inner thoughts sometimes just “pop” out. I’ve grown accustom to this, however one day things got particularly weird…
Edward has lived in his house for about 12+ years. I moved in when we got married about 3 1/2 years ago. We know our immediate neighbors, but don’t really have that close “neighbor” connection.
1. All relationships have Issues.
I’ve heard my husband called horrible names. I’ve seen people stare. I’ve seen people laugh at him and mock him. It hurts. I don’t care who you are, it hurts. It doesn’t get any easier. We can laugh it off, we can move on, but it can still be painful. I like to carry around a card about Tourette’s to share with those people. “Thanks for noticing, now go get some information.” In this PC, “accept everyone” world we live in, it’s sad to still see this happening.
Nothing is worse to me than starting a new job and having to Re-introduce Edward to new adults. I go through the whole thing where, some people know ahead of time, some don’t. Either way, they stare. Or they don’t know how to respond. You’d think it would be better with educators, but it’s not. They still act like he’s a weirdo or something. (We’re so accepting of kids with sped/504 issues, but God-forbid they grow up!)
Of course, being new to a school, I don’t feel as confident so it affects me. I feel self conscious and don’t know what to do. Sometimes I just don’t invite Edward, to attempt to make things easier. But it doesn’t. Again, I’ve mentioned this before, but it’s just so difficult with adults. Kids will think, “This guy is funny!” and move on. Adults get uncomfortable, or don’t know what to say. There’s nothing to say, just treat him like a person. If you have questions…ask! The silence is unbearable.
So, I’m a terrible wife. I really like to watch “my” shows. This includes Law and Order SVU and Game of Thrones. You know, shows you need to listen and pay attention to. I usually go into another room so that Edward can watch his shows. Always sports. 🙂
Well, Edward gets loud. It gets annoying. I find myself having to rewind what I’m watching repeatedly. Ugh. So annoying. Well, it started with me yelling, “Edward!!” But sometimes he couldn’t hear me from the other room,with his tics. I resorted to the obnoxious “Shhhhhhh.” Somehow that carries. I’m constantly saying “shhhh” when I’m going to bed early or we’re watching TV. I know he can’t control it, I’m not helping, but yeah. I’m terrible. So now, when Edward gets loud, I’ll immediately hear him saying “shhhhh” to himself. It’s become a tic. I feel bad about it.
I still do it though. Every day.
A lot of people with TS are on some kind of medication. Edward was on some, but didn’t like the side effects at all. It made him feel weird and he had some depression symptoms.
I have known a lot of people with Tourette’s who are on meds. You need to find the right combination for yourself. Back when I was young, medication was known for turning you into a “zombie.” I think that’s why parents and adults have trouble with getting medication for their children or themselves. It really has changed so much. Try a few and see what works. Or if you’re like Edward, and your tics are causing you too much trouble, don’t take them. The choice is yours.
I was asked to write a little about our relationship for people who are dating, etc.
Just like any relationship, at the beginning, Edward and I were crazy about each other. We worked at the same school, but rarely saw each other during the day. We spent a lot of time together outside of school. It was great, just like how most relationships begin. We had our difficulties, buy managed not only survive, but to thrive.
The summer after we started dating, we were both going to Vegas. He was going on a yearly “guys” trip, and I was meeting up with my best friend, totally independent trips, yet weirdly at the same time. We ended up taking the same flight. It was the first time we had been out of our ‘comfort zones’ with each other. When I started working at our school, Edward had already been teaching there for 8 years, so everyone knew him and had totally accepted him. Certainly, no one “stared” anymore, he was just himself.
When we got to Vegas, however, I noticed a lot of people staring. Since this was new to me, I couldn’t figure it out. I asked Edward, “Why is everyone staring at ME??” (Wow…I’m so oblivious.) He said, “Um…I don’t think they’re staring at you.” Shock! This was my first time experiencing the stares. It was totally weird and unsettling. I began staring back and used my “teacher face” on them…which usually did the trick. It was tough though. After that, I noticed people ALL the time. Although I was not the subject (target?) of the ‘looks’ and ‘comments’ it made me feel; awkward, uncomfortable, self-conscious, and [admittedly] embarrassed at times. It gave me a small dose of what Edward (and many others of course) have experienced everyday for most of their lives. As you might expect, I did feel differently about him, different, in that my respect and admiration for him increased even more.
We dated for about 3 years, then broke up for about a year. That was tough because we still worked together…It was a difficult year, we really were on-again, off again throughout. I finally ended it in April. That was good. We needed space. I was in a relationship before I met him and never had that much needed “Me” time. During that summer, I became closer to a lot of people in my life. I had tons of fun! (Make sure you have plenty of non-relationship time, ladies and gentlemen. You need it to truly be a well-rounded person!)
Anyway, we got back together in August. I was very reluctant at first, but I knew Edward was the one for me…I had always known.
All-in-all, we dated for 6 years. When we got engaged, people would say, “Finally!” But, there really isn’t a standard or ideal time frame when it comes to relationships. I’m glad we got the crappy stuff out of the way while we were dating, instead of rushing into marriage and having it deal with it then. Our marriage was well timed and we have been very happy!
I’m in education. The “R” word is absolutely one of the worst words to use to describe someone or something. This story involved that word. I’m going to use it for story telling purposes.
Like I’ve stated before, I have been very much involved in theatre. I was stage managing a show called, “The Boys Next Door.” It’s a beautiful, funny and heartwarming show about adults in an assisted living. They have varying degrees of intellectual disabilities. This was when Edward and I had first started dating and we had just opened City Theatre, so Edward was really supportive and came to a lot of shows. Most people knew him and I would let them know that he was going to be there. A few times people would laugh, thinking I was joking, and other actors would step in and defend him. I have been super-impressed with how accepting our acting community has been.
So, back to “The Boys Next Door”… Edward and his mom came to see the show. I didn’t hear him often, but a few times his voice would carry. Again, most of the actors knew him and didn’t care. But there was One. This guy was really annoying…he got on all of the actor’s nerves and mine too. At intermission during that show, he said, “Guys. I think there’s really a retarded guy in the audience.” Without hesitation, I said, “Nope. That’s my boyfriend.” He said, “No. This guy is really retarded.” I said, “No, he’s not. He has Tourette Syndrome.” This went on 2 more times. Finally, one of the actors stepped in and said, “Dude. Shut up!!” I dropped it. He was such a jerk anyway, I didn’t care. I saw him cowering around after to everyone (besides me) saying, “I didn’t know. I didn’t know.” No one consoled him.
I was really thankful to my actor friends for getting to know Edward and not taking any crap from that guy. He never acted with us again.