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Energy in the Stop

Finding Nemo The Musical, a personal favorite to watch

When I was an adolescent, my schedule revolved around theater and show choir. One of our regular choreographers told me and my peers over and over again: "There is energy in the stop." While dancing, I used this advice to make my movements sharp and clean, which resulted in meaningful actions that carried to the back seats of the auditorium. Lately, having hung up my dance shoes and theater makeup, I've been thinking about this phrase as it relates to Tourette's.

I almost always recognize a fellow TS-er. I never out them, but it is usually clear to me when a tic is happening versus, say, and rapid movement. But why? Why do I (as I'm sure most other TS-ers do too) pick up on the difference, even on the smallest tics? And is it alright for non-TS-ers to notice? Let's talk about the energy in the stop.

A voluntary movement, as defined by Introduction to Kinesiology: Studying Physical Activity by Shirl J. Hoffman, is intentional; "it is purposefully directed towards an identifiable goal." Tics, on the other hand, do not fall into this category because they do not aim to achieve an identifiable goal. For me, they are repetitive movements that I feel are necessary to complete for my body to stay at a state of normality. When I "hold in" my tics, I feel a similar panic that you might feel if you are underwater and you are unsure if you will be able to make it to the surface in time to breathe.

About this energy in the stop business. My own tics are individual rapid movements that harshly and suddenly stop, and then repeat. Most of the TS-ers I've met follow this pattern as well. And there's energy there! Just like people in the back rows of the auditorium focused on my crisp movements in theater, so are people in public startled by my tics that start and end quickly, even from across the room.

Is it okay to be startled and look at a TS-er when you aren't expecting them? Absolutely! The next step is learning about what to do after. Look forward to a new post addressing what to do if and when you are in the room with someone with Tourette's; how to handle the situation so both of you feel comfortable and welcomed.

If you or a family member has Tourette's and have a personal story you'd like to share with me, please see my contact page. Let's talk!

–KMJ

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Partners

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As a rule, I generally do not mention ┬ámy partner on this blog–it is an agreement between us, and I value and respect that greatly. However, seeing that this is a special day for them, I have decided to briefly break that agreement (do forgive me) for an appreciation post. I cannot think of a better way to celebrate than sharing a piece of what has become such a big piece of my heart–Tic Tock–with them, as well as describing to all of you my incredible joy in finally finding a person who sees my tics with open eyes, and loves my soul.

Thank you.

For your mind. The mind that enjoys actually scary horror films and sarcastic corgi gifs. That understands and will laugh (and eye-roll) at my jokes. That is open to try new foods, even when we are the ones cooking. That has a (to me) endless knowledge of wines, though I know you want to learn more.

For your hands. That work so hard to be the best employee possible. That are always gentle and kind towards me. That teach me new things (ahem, video games).

For your voice. That I don’t think I have heard truly angry, except that time when you stood up for me against a Tourette’s comment. That is there at the beginning and end of every day to ask about my day and my dreams. That you use to advocate for me and others with different abilities–not out of pity, but because you believe we are people who deserve to be treated like people.

For your heart. That cares for humans, no matter who they are. That believes in a world of justness, fairness, and equality for everyone. That is connected to my heart because, in so many ways, they are mirror images of one another.

For your soul. That does not love me in spite of my tics, or in spite of my tendency to speak out, or in spite of my tumultuous life’s journey. But because of those things, and for so many more.

Thank you for being you. You are everything. I hope your day has been and continues to be a reflection of the joy you bring to this Earth.

–Your Miss J

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Endless Fights

“Because no battle is ever won he said. They are never even fought. The field only reveals to man his own folly and despair, and victory is an illusion of philosophers and fools.” –William Faulkner, The Sound and the Fury

I feel like a shell of myself, like my insides have been pulled out and hidden somewhere I can’t go. Sitting in their place is a shapeless heat that travels up and down my abdomen with every breath. I look in the mirror and my eyes are not mine. My shoulders are tense, ready to retract inwards. I am hyper-aware of everyone around me, scanning constantly like an animal. I am a mess.

Getting here is no small feat for me. In the past year, I’ve learned a great deal of resiliency; able to let go of hurt and embarrassment with more ease than has ever been possible for me. But there is a situation in which I still fall apart, every time. The endless fight.

I am sure many of us have a person with whom we have an endless fight. It could be politics, our career choice, our religion, our choice in partner, etc. Some of these cause more major fissures than others, but they can all end up making us feel wrong about our choices/self and belittled. And I think a major issue with these endless fights (with perhaps the exception of politics), is that when they began, we did not want to engage in them. They were thrust upon us one day because of something “wrong” we did, and they have since spiraled into something unmanageable. In my case, I chose to fight back, knowing I would never win or feel closure, because I have to believe that who I am as a person is valuable and not something to be torn down. But this causes (see paragraph one).

Of course, there is something to be said about seeing the other person’s view. In the calm of my own home, thinking through everything carefully, I can do this. But when I am engaged in the endless fight, when every personal button is pushed, pulled, and flipped, I struggle to see any logic–even that of my own. All I feel is this fight and the past fight and fight before that. My head swells with memories of public words said and private tears shed.

I want to move forward, realizing the opposing dichotomy in front of me: on one side, I believe in respect and happiness for myself and want to stand up for that; on another, I recognize that the never ending fight is tearing away at me. I have heard the term “boundaries” before, but have only just decided to look into them after this episode of the endless fight. Boundaries are a way of maintaining a relationship, while giving yourself adequate space to live your life happily and fully.

Below are two resources that I rather liked that talk about boundaries. I’m not a psychologist, nor have a interviewed one; so I am not the best primary resource for this. 

I hope we can continue to go on this journey together, perhaps dulling some of the endless fights and becoming the happiest versions of ourselves.
Psych Central–general boundary info

Bustle–specific to 20-somethings who may wish to set boundaries

–KMJ

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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