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The Good Ones

SHORT POST-

I have had so many good people poke their heads into my life lately, and it is high time for an appreciation post. Here's to those who pop in monthly or less; you've just been swell.

I've been on sort-of vacation the last two weeks. Sort-of vacation consists of moving, wrapping up summer semester, and finally the joy of leaving Champaign, Illinois for a week. During this time, my parents have been helpful with moving and choosing new (to me) pieces from a re-sale furniture shop while being understanding of my school schedule; my partner's parents have been helpful by allowing me to stay with them and enjoy a beautiful first week off; my doctor has been helpful by consistently being the only tic doctor I've seen to be so, and by yet again listening to me at our appointment; my long-time friend has been helpful by spending a day with me and talking to me about my hopes and fears; and another friend has been more than helpful for doing some incredible TicTock artwork for me.

Everyone has been so wonderful!

And this feels good, because although I did not write about it, I did end up experiencing quite a slow-down from Olanzapine withdrawal. For approximately one month, I lived with flu symptoms and in a depressive state. I am happy to report that, at the two and a half month mark, my mood and physical state have greatly improved, and I have lost the signature crabbiness that followed me for that time.

Medication, as I have come to be aware, is not an issue to be taken lightly. While I still feel I have adjustments to make, I finally feel like I am at a good place to make them. And it helps so much with that process when the people around you, even the ones who just pop in and out, are kind and caring.

Appreciatively,
KMJ

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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  my 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

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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:

 

m r word

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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Audiology, Elle Woods, and Me

Legal

I have been listening to musicals a ton this week, something I have not done for quite some time. It has been wonderful to reconnect with the part of me that loves art and music. A particularly important song came up on my playlist this afternoon: “So Much Better” from Legally Blonde: The Musical.

In undergrad, I decided late that I wanted to be an ear doctor. Becoming an audiologist requires grad school, and at the time, to get into grad school, a prospective student was required to observe a certain number of hours at audiology offices.  Being late to the game, I had to get in a lot of my hours during one summer. I called every ear doctor in my hometown, and just one ended up taking me for observations. Eager to learn what real clinics were like, I put on professional clothes, grabbed a notebook and pen, and went out to meet the people I aspired to be.

The first day went off without a hitch. I learned about new equipment and techniques, and was eager to come back. I scheduled a second observation time for the next week. And that is when everything fell apart.

I was having a bad tic day, but I was determined not to let it deter me from accomplishing my goals. I started the observation, taking deep breaths and blinking slowly to try and reduce my ticcing. Honestly, I was feeling pretty good about myself, like I was overcoming my tics with willpower (this is not necessarily a healthy thought, but I was younger then). That is when an elderly couple in the waiting area began to make a scene about my tics. They pointed at me and narrowed their eyes. “That girl has Tourettes!” they said, motioning to other people and getting their attention so they would stare too. “I don’t know why they have her here.” This went on for about five minutes. My face got hot, and tears started forming in my eyes. The audiologist I was observing did not say anything to the patients, and when I left that day, the receptionist told me they had made a policy change and they would no longer have me come observe at their clinic.

Even writing about this now; now that I am in graduate school; now that I see my own patients; now that I am well on my way to becoming an ear doctor; I feel incredibly hurt by this moment. This was the moment I realized I could not live safely in academia forever. The moment I learned random people truly believe that I do not have the ability to do my job, or even the right to be there, because I tic.

So where does Legally Blonde come in? That night, when I was ready to quit audiology, I went to my community theater and saw this production, and I bawled. Because here was this woman, with so much potential, who no one took seriously because of something she could not control. And she works incredibly hard and shows them all up.

I took the next few days off of audiology. But when I was ready, I pulled out my textbooks and started reading–to the soundtrack of Elle Woods.

–KMJ

medication, Uncategorized

One Week Later

Dancers_-_Statues_in_Okayama_City,_Japan_-_DSC01742.JPGYou have probably noticed I have been absent for the past week or so. This is for 2 reasons: 1) I have had finals, and grad school finals are like exams on steroids so I spent most of my time studying last week and 2) The Great Olanzapine (aka Zyprexa) Lessening of May has begun! I wanted to allow for a break so I could accurately report on what my brain has been up to, and I presently feel I can do so! Let’s begin.

In the past when I have had GOLs, there have been quite a few adverse side-effects. These include two to three weeks of severe depression, nausea, insomnia, and disinterest in most everything. Overall, it is a crummy bit of time. But I am rewarded after those few weeks with more energy, a clearer mind, and a better-working memory. I accept the trade as unfair, but a necessary part of getting myself back.

This GOL, as the times before, I was preparing for the worst. I had stocked up on inspirational quotes and calming pictures, and I had contacted close friends so they knew what was coming and how to help. Except I didn’t end up using any of the resources that I put into place because something weird happened: the awful didn’t come.

Instead, parts of my brain woke up from the dark world its been dormantly existing in for the past two years. It started with my sense of touch. One afternoon, I was lounging with my rabbit, and I was astonished by how soft he felt. I thought perhaps his diet was going well and thought nothing of it. But then I started noticing fabrics: the intricate criss-cross pattern in a 500-ct sheet; and the short velvet on one of my dresses, where each piece had a starting and ending point. My fingertip could softly press against another, and it was like the butterfly kisses my mom used to give me as a child. And then my taste started coming back. Coffee tasted darker and richer; chocolate tasted grainy and sweet. It was like being re-introduced to the world. Being born again. I was a child tasting soda for the first time. A teenager holding hands with her partner for the first time. All of this laid out before me, and honestly? It was intensely overwhelming, and it still is. I am living in a world of firsts, and it is a lot to get accustomed to. But it is also exciting. The world is new and fresh, like after a spring rain. And I have the pleasure of savoring every second of joy and sensation this life has to offer.

There is one other part of my brain that has woken up this week. I used to love music, art, plays, novels, and dancing. But these past two years, I haven’t sang in the shower a single time, auditioned for a show, read more than two books for pleasure, or been to the art museum once. This Thursday, however, I felt a spark. The lights went on and everything lit up in full technicolor. Out of seemingly nowhere, I wanted to dance and sing and read and look at art all at the same time. A part of me that had been a huge part of my identity had come back to life, and I am happy to report she is still here.

I am thankful that this GOL has not brought distress, but rebirth. I know this is not typical for me, or for others. If you or someone you know is having issues with Olanzapine (Zyprexa) withdrawal, please feel free to comment, or send me a message. Although I am not there this time, I have been in the dark spaces this drug creates, and I would be happy to offer support or a listening ear.

–KMJ

medication, Uncategorized

What’s it like to take Brain-Altering Meds?

brain-951845_960_720**The blog is in no way intended to demonize medication. The experience is that of the author’s with a medication that was, in the author’s opinion as well as her current doctors, prescribed hastily, inappropriately, and at too high of a dose.**

The cold drink of water. The chalk-but-not-chalk taste against my throat. The deep breath after. I close my eyes and think about the medicine being processed inside my middle, then traveling upward to my brain, where it works like a too-motivated intern, blocking certain communication signals. It dampens my nervous system. Its job is to make me–the me that is my memories, my feeling, my soul–to not be at all. Like a thief, it robs me of my passion, my drive, my ambition. But it makes the tics stop. The tics stop, and people around me don’t notice that I am the way I was made. And this is what my medication is like. The medication that alters my brain to make me fit into society’s perfect shape.

It was a numb, unfeeling place for me to be on high dosages of brain-altering medication. One where new memories were not formed. I walked as a very real zombie for a time in my life, eating and sleeping, but not feeling–physically or emotionally. Foods did not taste as vibrant and tactile sensations were dull. And this turned me into a person I did not recognize. I was not compassionate or empathetic towards others, and I could not handle any amount of companionship without crumbling underneath it. I also did not handle my responsibilities well–missing deadlines or not attempting projects at all.

I know it may seem like the “easy way out” to blame the medication. If I could have only been stronger or more organized or cared more or, or, or….

But what more accurately happened with these brain-altering medications, is that I lost control. I was totally at the mercy of that too-motivated intern who sat at the desk of my brain and pulled the strings. I was like a dead-eyed puppet, waiting for the next dose to destroy that day’s sense of self. But also to stop the tics. For though every part of who I was was gone, so were the tics. And people seemed to like that.

–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