EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 24 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
This week could be one of the highest stress, anxiety-filled weeks yet this year. My father had been gone for almost 12 years and my mother just over four years. Losing a loved one is never easy, and I’m not sure you really ever get over it — especially losing them at such an early age. I lost both my parent before I even reached 35 years old, and they were both in their early 50s when they passed.
Since I spent most of my life in the TS closet, I never really spoke to them about it. If TS is in fact hereditary, I’m not sure which side of the family it came from, and now I can’t ask them to see if they would have a clue. My parents divorced when I was very young, but both were remarried and had kids. I guess I will get the answer to my question if any of my nieces or nephews ever starts ticcing, but I would not wish that on any of them.
I don’t wish this mysterious disorder on anyone, but at least if one of my nieces, or nephews were ever diagnosed with TS, they would have me there for them. Someone to show them it’s just another thing; it’s not a death sentence. It’s just something we deal with, and move on with, day to day. That’s what I do.
As for kids and myself, that’s not going to happen. I did want kids at one point in my life, but my husband doesn’t, and now I just feel too old anyway. If my husband ever did want to have kids, I would want to use his swimmers anyway, not mine. I would not want to chance my kid having TS. What if it was worse than mine is. I just couldn’t handle the thought knowing I did that to this person.
My best friend who is single has been trying to get me to have a kid with her for years. She knows I’m gay, so it’s nothing sexual, just the chance to have a kid. I finally told her, no, because I would not want to pass on my TS.
I do love kids, but you know what, my OCD and a kid would drive me crazy. If I want to spend time with kids, I will visit my nieces and nephews. That’s perfect for me. I’m just too OCD, I would have my child in a bubble all the time, a big plastic germ free bubble. OK, so I guess I just gave birth to bubble boy, lol, but seriously!
I have walked around the streets of the city and watched mothers letting their 9-month-old child crawl on the filthy streets of NY. The same side walk that rats ran across last night, that same sidewalk 15 million people walk on every day, that same sidewalk the dog peed on, and the same side walk the pigeon pooped on.
It’s just gross and I am always shocked when parents let their children play on the sidewalk. Forget about a stroller, it would have to be a bubble, and I would have to fire hose him or her with antibacterial before they came into the house. See, it really all just sounds like the border lines of child abuse, oh my poor child, lol.
With all these family thoughts, I got to thinking about how I had spent most of my life in the TS closet, and just tried ignoring it most of my life. It’s not something easily ignored. Most people with TS tend to be ticcier at the end of the night because they have suppressed it for so many hours throughout the day. Now I’m wondering, is that why my TS has gotten so much worse in the last few years. I spent years suppressing it, and now that I’m more open about it, it is my “night time”. It’s an interesting concept, I guess it could work like that.
Well this is my last week in NYC, I’m off to Martha’s Vineyard to finish writing my book. It’s been a crazy week. I’m so OCD about organizing and packing it just left me so stressed all week. I’m going away for two months, and there is just so much to think about and so much to do before you leave for a trip like this. I have lists and lists of things to do. I have lists inside of lists. It’s all been enough to make me scream, and it all almost did on Thursday morning.
I woke up and checked out my bank account online to find I had become a victim of grand larceny fraud. Really? I’m leaving in three days, and this is just the last thing that I need to, or want to deal with. Now it’s hours on the phone with the bank, the company that whoever stole my card, paid a bill too, and a trip to the police department to fill a report because it was over a thousand dollars. (OK, I’M SCREAMING NOW).
Whoever took my card info paid their electric bill. No one was able to give me any info, because it was against their policy. Con Ed was able to give me the account number that the payment went to. Hey, guess what Con Ed? I can go online to your website and type in the account number and have all the info I need. I did that, and called the detective and gave him all the info. Let’s see if anything comes out of it.
My back hurts, my neck hurts, my shoulder hurts, and I just can’t wait to get away from this all and try to relax. I know the term, “just relax” is just not part of my vocabulary, but I’m really going to try. Besides my anxiety triggering my tic, my anxiety triggers my anxiety. This week I was so stressed, I was sure I was going to get shingles from the stress. I NEED TO CALM DOWN. I am going to drive myself crazy.
My goal is to relax, work and enjoy life. I realize that most of the time the things I stress out about are just not worth the toll that I put on my body. I’m just going to breathe and relax. Let’s see if I can do it.
Until next week, “I’ll tic to you later.”
