The Flight Attendant

Last summer, we were visiting my best friend in Portland, OR. We were taking a late-evening flight and I forgot to pre-check us in, so we were in the C list for boarding. (I don’t recommend!) It was a full flight, so we didn’t get to sit together. I told him to sit in the first aisle seat we found and I sat in the middle of 2 people about 5 rows behind. 
Soon after we were getting settled, I noticed a flight attendant speaking to my husband. Then, shortly after, another flight attendant came over. I was trying to crane my neck to see what was going on. Edward turned, gave me a “thumbs up” and that was that. I really didn’t think it had anything to do with him directly.
After we landed, Edward told me that the situation with the flight attendant DID concern him directly. He said that the 1st Flight Attendant asked him if he needed to move because he was sitting in the Emergency Row. She didn’t think he could handle sitting there. She told him that she would switch his seat with another passenger. Edward was about to get out his Tourette’s Card and tell her that he would be okay. Luckily, a 2nd flight attendant came up and said, “He just has Tourette Syndrome! He’s fine! He can sit there! Leave him alone.” Whew, thankfully she came in to save the day. The 1st flight attendant was holding up the flight with her questions to Edward…How ridiculous. Edward is an Athletic Director and is very strong and fully capable. He was sitting in a row with 2 elderly people (don’t think it was the old lady from church) Seems odd to me that he was singled out.
I really, really wish we would have been sitting together at the time. However, it’s a good thing we weren’t because I probably would have caused a scene! I should have written to the airlines to tell them about the situation, but I didn’t. It was during the summer, I was about to graduate from grad school…too much was happening. By the time I could get around to writing, it seemed too late. 
It was a frustrating and unexpected situation. I’m glad it didn’t escalate, but I’m sure it easily could have. I won’t mention the name of the airlines. It rhymes with….Just kidding, I won’t do it, won’t even give you a clue. Let’s just change the subject, how bout that SXSW thing, hope I get to go back someday.
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Exfoliation and OCD

Let me say, that my moving in was a HUGE adjustment for Edward. He had lived in his house for many years and I came in and changed everything…Slowly, but yeah. It was a big adjustment. I knew Edward was a little anxious about my changing things. (OCD is a factor here.) So, I tried to be considerate, for the most part, I think.
 
Soon after we got married, I purchased a new loofah sponge for the shower (who doesn’t?). I cut off the tag and threw it away in an empty bathroom trashcan. I didn’t realize he had just taken out the trash, nor did I think it mattered. So, there was the tag laying at the bottom of the can. No big deal, right?
 
A few hours later, I hear Edward reading the tag, “Exfoliating loofah”, etc. He immediately said, “People just come in my house and start exfoliating everything and I don’t even know what’s going on!!” Oh my goodness….I was dying laughing. 
 
I had to adjust to the fact that he notices everything and forgets nothing. Hard to judge who had the most adjusting to do, but never questioned that we would get it done….together. 

Neighbors and Funny Outbursts

 

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. 

 
I always wonder what could be going through their heads when Edward is doing yard work. He’ll “whoop” really loud, yell random things repeatedly, and yes, yard work can apparently be really “Cool” and “Awesome!”  He’s comfortable at home and in his yard, so he doesn’t care about letting all of the tics out. It can be entertaining at times, and for me…. oddly comforting. ( I know, weird but true)
 
I imagine the neighbors have figured it out and just don’t say anything. I’m fine with that. It must be strange though, hearing a guy (randomly) yelling as he’s mowing the lawn. There are much worse things than that, maybe even in a neighborhood near you.
 
I can’t help but laugh sometimes over the things he says. Edward calls his Tourette’s a “truth serum.” He will yell out whatever he is thinking, even if it’s totally off topic. You know when you have that random “Squirrel!” thought, but you just keep it to yourself? He sometimes can’t. We’ll be having a conversation and he’ll say, “Joe! Joe! I need to talk to that guy.” What?? You’re talking to me. Or I’ll be talking to him about something and he’ll say, “I gotta do that.” Wait, what do you have to do? Are you even listening?? The fact is, he really is, yet seems to often have another Track playing in the background. Guess we all do this to a certain extent, except his pops out when he (and whomever) least expects it.  
 
My best friend likes to share the story of when he saw her and, without hesitation said, “Crazy!” Then followed it with a few more, “Crazy, Crazy, Crazy.” She said, “OK buddy. I know you just called me Crazy, don’t try to pull that ‘it’s just a random tic’ stuff on me.”  She’s a great friend and a good sport (and just a little bit crazy. 😉 ) 
 
I won’t share all of the funny outbursts, but there have been some good ones through the years. More will likely come up later. 

7 Things I’ve learned as a Wife of a person with Tourette’s

1. All relationships have Issues.

Yes, all relationships have something that make them tough. That’s why it is important to be with someone who you are willing to “deal” with on a daily basis. There are people who go through so many hardships- money, illness, kid issues, jealousy. There are always things that happen that make relationships hard, so I’m glad our main “issue” is Tourette’s. It’s a part of my husband and I love how we can “roll” with it and laugh about it!
2. People Can Be Awful

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.

3. People can be Fabulous!
It’s great when people are accepting! Some people want to learn more, others just go with it. I love when people stand up for my husband and don’t let others make him feel bad.
4. Everyone has their own Quirks 
Once you are familiar with TS, pretty soon you think Everyone has it. You start noticing habits, “tics”, and other weird things people do. It’s awesome. We’re all a little quirky. Embrace it!
5.   Meeting New People Can Be Hard
You get your comfort-zone friends/co-workers and life is grand. It’s moving to a new job, new town, going to a new restaurant-It can be tough. When I’m feeling insecure about myself, I start noticing people staring at Edward. It can be tough. Going through the, “Yes, it’s Tourette’s. Stop staring,” can get old. Remember that everyone has their “stuff.” Be happy with the cards you were dealt. We all have a reason and a purpose.
6. We all have bad days. 
There are days (many days) that I tell my husband to “shhhh” or get frustrated when he’s loud. When he tics while I talk, I say, “Did you even hear what I said??” I think it is probably the case for any relationship. I feel bad about it; I know he can’t help it. I’m not perfect either. (Shocking, I know)
7. If you’re with the right person, nothing can stop you from being happy!
Enough said.

New Job

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.

Shhhh!!!

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.

Meds

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.

Relationship

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!

The “R” Word

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.

My Husband is not a Toddler

I am on the board of a theatre company in Austin, so I go to plays a lot. Occasionally, I’ll drag Edward there. I want him to be there, but then I spend most of the time worrying that other people will be bothered by his tics. We’ve had people look at us or move. It stinks.

There was this one time, back when we were dating, that we went to a play at a fancy theatre in Round Top. A friend of mine was directing and several of us went to support him. A few days later, one of my closest friends said, “Hey, Edward did really well during that play…I was surprised.” He caught himself and followed up with, “I’m sorry I just talked about your boyfriend as if he were a toddler.”
Thankfully, he caught himself. I knew what he meant and appreciated the apology. My husband isn’t a toddler, y’all. His tics are cute. I mean, he says “Awesome” and “Alright” most of the time…he’s just fun to be around. People mean to be supportive, but I see them give looks like you would a child in a cute dance recital. “Isn’t that precious…” Again, people mean well. It’s just weird.