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Letting Go

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I saw Disney’s Frozen in theaters. I fought going because December 2013 me felt extreme shame of her tics, especially in large crowed rooms where she was supposed to stay silent for 1 hour and 49 minutes plus previews. I did end up spending a cold afternoon watching Anna and Olaf run about the Norwegian fjords, but the movie was so much more than that. Frozen started my process of recognizing the hurt inside of me, the damage it was doing, and how to (begin to) let go of it.

Recently, I have had an uptick (no pun intended) in anger and resentment towards the individuals who hurt me in the past, regarding Tourette’s. I have become embittered and harsh in my thoughts, and I am sure this has carried over in my words and actions. For a two and a half years, it was as if I was drugged (well, I was I suppose), and went about life in a robotic fashion, not “making waves” for anyone. But when I lessened my dosage of Olanzapine, my memories came back, sharper and more vivid than they have been in all that time. I have woken up, and every emotion from those years of repression is hitting me like a hurricane hits a shack on a forgotten island. The hurt is gnawing on my being every day. And I know I have to let go of it.

I think about Elsa often. Adults telling her that if she could just hide the thing that her body most normally does, and just not feel anything at all, then maybe she would pass as normal. About her hiding in her house, because the adults who were supposed to protect and teach her are scared that what she would do will reflect poorly on them. And I think about her when a bit of magic slips out. How embarrassed she is, and scared. It’s as if she truly feels less of herself. Throughout the story, no one helps her with the thing that makes her, her. People are scared of her, they resent her, they try to take advantage of her. But they never, not once, help her. She is the person, who through her own acceptance of her life and situation, makes the thing she has beautiful.

I certainly recognize that unlike Elsa, I do have support systems which I am extremely grateful for, and whose blind love and compassion I will never understand. But I also recognize that they cannot help me let go of the bitterness inside. Because like Elsa’s fear and hurt made her ice jagged, my anger has made my insides very much the same. And so begins the process of changing the pain into something that is not hate. Making beautiful ice is a challenge, but it is one I am finally ready for. I am going to talk about that now, in probably the most nerdy way I can imagine. Fair warning.

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If you know me personally, you know I love science. I have spent (actual) years thinking about the symbolism of the element Hydrogen, and have landed on this. Hydrogen is this amazing element that exists on its own. Let’s think about Hydrogen gas (which is really 2 molecules of Hydrogen paired up together). This gas is extremely finicky. As in, it likes to catch on fire (think Hindenburg airship). At this moment in my life, I feel like Hydrogen gas; volatile and ready to explode on anyone who lights the smallest spark. But remember, Hydrogen is an amazing element. Hydrogen bonds with other elements to create new versions of itself. Take water, which is 2 molecules of Hydrogen (yikes!) plus 1 molecule of Oxygen. Yes; add one molecule of Oxygen, and what was once dangerous and explosive becomes a foundation for life. **It’s a bit more complicated with bonds, polarity, etc., but for the sake of the post** What I need to do is find my Oxygen. The thing that will transform the awful inside into new life (or water of the frozen variety, your choice of analogies).

A good place to start is with peace and forwardness. I am at a place where I totally and fully accept myself and my tics. I do not, however, fully accept my younger life’s memory and the people who reside there. But one thing I believe with all of my heart, is that I can take those past memories when I felt fear and shame and unworthiness, and turn them into advocacy. I know that those people will never own what they said; in fact, they likely do not remember. But that is getting okay-er with me, because despite what was said, I am strong, independent, and fiercely passionate about the people with this disorder, including myself. And I am going to make pretty ice.

–KMJ

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Secrets

Secret

Today I am going to tell you something. Most people in marginalized populations know it to be true, but I think it needs to be made clear for everyone. So I’m going to clue you in. Only this secret is something you should share with everyone: your bank teller, your estranged friend in New Zealand, the friend you eat pesto pasta with every Tuesday afternoon, even your chinchilla Fred.

The secret is: the hostility towards me, and the people like me, is not going to get anyone anyplace. I know the rationale. I have a disability, and the disability I have is labeled “The Swearing Disorder.” The jokes about it have been virtually left alone by the social justice movement. Online and in pop culture, people are free to say the most offensive, uneducated statements about it. The influence of TV and social media paves the way for these thoughts to come into real-world situations, where they are turned to words and actions. We all have to feel like we are better than someone, right? And I’m right here.

In the past years, months, and weeks, people have mocked my tics, told me my ambitions were laughable, tried to derail my career path, and just been overtly rude. My very being here is a joke or an offense to them. But the thing is–these people are not going to get ahead by showing their prejudice towards me. As the world moves forward, this way of thinking is going to fall by the wayside. Soon, these thoughts and actions will be unacceptable–even in the case of Tourettes. We’ve seen it with movements like “Spread the Word to End the Word,” which lead to the passing of Rosa’s Law in 2010. Rosa’s Law was unanimously passed in both the US House and Senate, by the way. The legislation removes the words “mental retardation” and “mentally retarded” from federal laws. Additionally, the movement greatly removed the “r” word from the American vocabulary. A google trend search on the term “mentally retarded” results in the following graph, where 100 means peak interest, 50 means 50% as popular as the peak, and 0 means less than 1% as popular as the peak:

 

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Of course, this movement has not ended discrimination towards individuals with different abilities, but I think it is certainly a start. The way we speak affects the way we think and create culture (see WSJ, Mental Floss, etc. for more details). The movement also made popular the idea that it is unacceptable to use the “r” word as an insult or a descriptor, which is a huge victory for respect and compassion.

The path to end the hostility towards people with Tourette’s will look different, for a couple of reasons. For starters, there is no one word to rally against which can be the backbone of the movement. We are pushing against a host of insults and untrue claims; it is hard to choose what to focus in on. Secondly, Tourette Syndrome is, for lack of a better term, distilled down compared to fight to end the “r” word. It is a specific disorder, affecting only 1 out of 360 children in the US (CDC). And as those kids get older, the number gets fewer, as many “outgrow” the disorder. For us, the path towards kindness and understanding is likely going to include lots of re-education and re-defining the social norm. Our journey will be different and long, but that does not mean we should not have it.

Personally, I hurt thinking about when I was told I would never make it at a big university, that I could never live in a town far away, and that I was not beautiful. I resent being put on drugs that stole away two years of my life, and getting unsatisfactory care because doctors choose to experiment with my meds. My heart aches at the memory of being mocked for years by someone I trusted.

I am tired of being told that I am less than a full human because I tic.

Welcome to Tic Tock, where whether it is just me, or a hundred people, there is a movement. A movement to spread the message that no one needs to be superior to be happy. A movement to love each other for who we are, not for what our bodies do. And here, that is not a secret.

–KMJ

 

 

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My Advocates

Sorry.jpgUpdate on MedChange2017 for those interested: I am trying out the “new-and-improved” version of the medication that I like, so the Great Olanzapine Lessening has been postponed a week or so (it is not the best idea to do two things at once). So far, no major changes to speak of, which I think is to be expected (and is welcomed).

Today I want to speak about the importance of advocates, and for those who know me, my favorite way to talk about anything is through the lens of a story.

When I was 5 (give or take, I’m really unsure of the timeline here), my family was having their annual Thanksgiving Day dinner (again, I think it was Thanksgiving, the exact details about the actual event are fuzzy). For those who have never been to a Thanksgiving Day dinner hosted by my family, there is usually lots of grown-up food, football, and loud talking. None of which I was particularly interested in at 5. And certain members of my family who were similar in age agreed. So we ran off to the computer-room-to-be (there was no computer there yet…oof I’m old) to play a board game. We chose Sorry!, perhaps the meanest child’s game the world has ever invented. Like come on, the name of the game is a sarcastic Sorry! Ugh.

Anyways, we began playing the game, and for those of you who do not remember the game, in order to put your piece on the playing board, you have to roll a certain number on the dice. We went around a few turns and my family members respectively rolled the number and got on the board. But I did not. Turn after turn after turn I did not roll the number, and so I could not start playing the game. And yes, I started feeling really left out as my family members played Sorry! and had fun while I sat on the sidelines, unable to join in because of a rule that I could not change.

I obviously did not realize how incredibly metaphoric this situation was until I was much older. The idea of an arbitrary rule allowing some to participate in activities, but not others. The idea that those who could not participate would try again and again to live up to the rule, but that they would ultimately fail. How do people in the differently-abled community ever get past social rules that they themselves are unable to change? A more real example: How do I, as a person with Tourette’s, make “Tourette’s Guy” and all of the other Tourette’s jokes on the internet go away?

I certainly do not want to devalue my own empowerment. This blog itself is a way for me to speak. And there are many, many other outlets! But after I was playing Sorry! for quite some time, stuck at the beginning and feeling very sad (and admittedly getting upset, as 5-year olds do), an advocate came into the room. She suggested that I be allowed to start the game, that I be allowed a level playing field with my other family members. This was met with some resistance, but my advocate stood firm, and eventually I was allowed to play.

Advocates allow us to move forward when we are stuck in a place where the rules are unfair, or the people are harsh. When we have done everything we can, but the situation is not one that is respectful of those who are like us. When we need an outsider.

We have all had advocates, whether it be our parents, teachers, friends, or other people in our lives. This particular entry is dedicated to all of those individuals who have advocated for me. Thank you for seeing past the tics, and seeing the person that I am.

–KMJ