Uncategorized

Letting Go

wdw2017080690703414_7983057997_dsnyRes-base_dsnyLoc-reg.jpeg

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.

hydrogen-element1-1024x1024

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

Advertisements
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

Uncategorized

My Medication Story

Pill2

You may be wondering why you would care to learn about my medication story. And I have one answer for you: it is a damn good story.

I began taking medication right before college started, but that patrticular story is entirely uninteresting. When the story becomes interesting is with the introduction of Olanzapine. A thing about Olanzapine–if it is not used in at least one of the seven circles of hell, I do believe new management is required post haste.

What is Olanzapine? It is actually a drug used to treat schizophrenia, usually as a near-last resort. But for me, a Tourette’s patient, it was used as a first choice, at a very high dose. Why?

In January 2015, there were a lot of stressors in my life, including moving into a new apartment, best friends traveling abroad, and a breakup. Additionally, stressors from my past were catching up with me, mainly the way that I had been treated by certain individuals because of my Tourette Syndrome (ranging from conversations about how I needed to be “fixed” to blatant mocking–I should note all of which were by adults). I felt like I was a bastardization of a person, with no support system and no way out of what I felt was the prison of my tics. After a while of severe depression and self-hatred, I was hospitalized for mental care.

I was in the hospital for 5 days, and a lot of the things I learned about myself and about coping were very therapeutic. I learned how to be kind to myself. And the people who were in the mental care unit with me did not mind that I had Tourette’s, which was the first time that had ever happened. They saw beauty in my life. And that was incredible.

But then I met the psychiatrist. He was kind enough, I suppose, but he kept pushing me to “admit” to things about my mental health that weren’t true. For example, on the first day, I said that internally, I felt like I always was pushing myself to be perfectionistic. Over the course of the next 3 days, he kept asking leading questions about the “voices in my head.” He put me on Olanzapine the first time he saw me. I should note that the hospital took away our phones, and we did not have any internet access while in the unit, so I had no way of knowing what I was getting myself into. They gave me a side effects sheet, but the sheet in no way explained the hell I was going to be put through. By the end of the 5 days, I was on 10 mg, a very high dose.

Olanzapine took everything away from me. I do not remember a full year of my life, because my mind was so impaired. I’ve only now realized that it also took away many of my sensory perceptions. I slept for days at a time, unable to muster the energy to open my eyes, let alone get out of bed. At one point, my parents sent the police to my apartment because they could not get in touch with me for so long that they thought something had happened to me–I had been asleep for days, unresponsive to alarms and phone calls. I went from a straight A student from barely being able to go class. Every part of me that had made me, me, was gone.

After 6 months, I wanted to get off of Olanzapine. I started the process in the summer of 2015. It is now April 2017, and I am at 2.5 mg. Nearly 2 years, and only 7.5 mg of improvement. The withdrawal symptoms associated with lessening a dose are almost worse than the medication itself.

On Friday, I go to get another reduction. I plan to blog throughout the experience, so as to shed light on what we as Tourette’s patients go through to fit in to society, in the hopes that one day we might find the magic pill that will stop the mocking and the calls to be “fixed.”

–KMJ