The idea of the surgery I had is to reroute my circuit. I find brain plasticity fascinating and how DBS surgery can potentially rewire the brain! Think of it this way, having Tourettes is like being on a freeway that goes in circles. Lets call it the Tourette’s circuit. You keep going round and round and round, ticcing, ticcing, ticcing. But DBS allows you to find a potential detour. That detour can potentially lead you to creating a new circuit so you can off the Tourette’s circuit. So it takes a while to see results when it comes to brain surgery. It doesnt happen over night. It happens over the course of a year or so sometimes.
Remember, don’t ever compromise your rights and be persistent when fighting for your rights. The world is not going to hand you your rights on a silver plate (unfortunately), you often need to educate yourself and stand up for yourself.
I have a friend who is surprised by how many times per year I get discriminated on campus because of my severe Tourette’s. It happens! There literally hasn’t been a year where I haven’t been discriminated against. I can understand why severe Tourette’s is hard to wrap your brain around especially when meeting someone new that has Tourette’s. A small percentage of people with Tourette’s has severe Tourette’s so that’d make even more sense for people to not understand. But really people? I’ve been on this campus for years and people need to have more compassion, especially professors and people in leadership positions. Just a reminder Tourette’s is a neurological condition where a person has involuntary physical or vocal “tics” or symptoms such as shouting, screaming, jerking of the head, blinking, etc. It has to do with imbalanced brain chemicals.
I’m not wanting to bash my favorite college. The reason why it’s my favorite is because despite the few people who aren’t as understanding, most professors and students are AMAZING. The community there is close-knitted and most are super kind and nice. It just becomes exhausting and disheartening to fight every year to reserve my right as student.
The first year I was there in 2009, I took a choir class in the winter. Everything was great and dandy until the choir concert date came close. Choir concert is an event where the choir class sings in front of an audience at a theater after a couple months of practicing singing in class. As time gets closer my Tourette’s becomes worse because I get nervous and anxious knowing id be standing in front of an audience. So, a several weeks before the choir concert, my professor came up to me after class asking me if I could not sing with the class because my Tourette’s seems to have worsened. I was heart-broken. At first I agreed because honestly, I didn’t know how to stand up for myself the first year of college. I didn’t know about Americans Disabilities Act of 1990 until high school! I didn’t know my rights as a citizen here despite my disability.
I came home to my family and friends sharing the disheartening story. They told me to talk to her about it because kicking me out of the concert choir is not right. I agreed. I then emailed and talk to the choir professor and she negotiated saying she’d willing to let me stay there for half of the time. I had to talk to my disability center on campus too, but they wanted me to compromise also. My strong-willed sister told me that compromising my rights is a no-no. So eventually I told the professor I wanted to sing for the whole thing with my classmates. She was so angry at me. Long story short, I sang with my concert in the end with very few tics! I wasn’t sure why. I wished that my choir professor was more supportive though. Afterwards, I sent her a Christmas card to see if we can fix the relationship but she wanted nothing to do with me.
Another instance was when I was taking ballet in 2010, but the dance teacher wanted me out. Eventually I just took Jazz dance because students in the ballet class seemed so tense and stuck up. I didn’t like the atmosphere. With jazz dance, I took the same teacher as ballet because she was the only one who taught all the dance classes. She would constantly ask me why my tics are so bad and tell me to keep it under control. The thing about Tourette’s that you should know is that when you tell a person with Tourette’s to stop ticcing or to keep it quiet, they feel the need to tic more no matter how much they suppress it. Suppressing the tics makes things worse. It’s like if you have the hives and you try not to itch the scratch, you just want to do it more right? The mind of person with Tourettes is interesting. The more you tell them not to do something, the more they’d have to. So, her telling me that didn’t help at all, it backfired. I felt so uncomfortable and stressed in the class all the time. The students were understanding but they had no clue how cruel the dance professor was. She’d pull me aside after class sometimes and always try to talk me out of having tics. That’s impossible! Its equivalent to telling a blind person to stop being blind. I still feel angry thinking about this today because I felt like I allowed her to step all over me and I didn’t stand up for myself enough.
There was another time where I took this Model United Nations class and the professor chose me and four other students to attend a conference in Galapagos Islands. I wrote an essay about why I should be chosen and got picked! But administers at the college campus was afraid of liability and didn’t want me to travel with my professor and classmates. I fought hard for two months to take this trip with my classmates. That’s basically almost an entire quarter! I failed my economics class because of the hardship. I couldn’t focus in my classes because almost every day I spent time emailing, calling, and meeting with the administrators and leaders of the campus to fight for my right to participate. Eventually, they let me travel to Galapagos. I just had to be persistent. I had a lot of support networks too that helped me through this process. I just wished I applied for a hardship grade during that time instead of letting myself receive a D.
There was a weird situation when I was taking a math class where I agreed to do it via webcam in the library because the professor was pregnant and didn’t want me to scare her to the point of miscarriage, which is pathetic to me when I think about it now (because I’ve been pregnant before and the doctor specifically said my hitting and rough violent tics will not harm the baby throughout the pregnancy soooo why would my sounds cause miscarriage at all?). Honestly, I was naïve during that time and was super considerate to the professor but I believe she just wanted an easy out so she doesn’t have to deal with my tics. It’s not like I’m going to stab her pregnant stomach with a pencil as a tic. They’re just SOUNDS.
Honestly, thinking about it now, some of the people who worked in leadership positions on campus never looked out for my best interest. They looked out for the political interest of everyone. It’s quite sad because you think that’s the whole point of being in a leadership position… to lead and to love.
I’ve learned a lot through these experiences. I don’t want anyone with Tourette’s or any disability to go through what I had to go through, and if they did, they’d knew how to handle the situation. I can’t prevent anyone from being discriminated against but I can offer tools, techniques and knowledge. I hope this post was helpful for anyone who Is a student with Tourette’s or other conditions. Remember, don’t ever compromise your rights and be persistent when fighting for your rights. The world is not going to hand you your rights on a silver plate (unfortunately), you often need to educate yourself and stand up for yourself.
Many of my friends and family know this but, I’ve had brain surgery in May 2016 (several months ago) for Tourette’s called Deep Brain Stimulation (DBS). It’s pretty experimental and not approved by the FDA. I was able to fight with insurance and get the $200,000 + covered by my fathers insurance, Regeance. We only paid for $500 at the end.
Honestly I was scared. I did so much research and read academic journals to make a wise choice. I’ve talked to other people with Tourette’s that went through the procedure. I pondered about the idea for the longest time (at least a few years or more). DBS is only for people with severe cases of Tourette’s and who has tried every single medication out there. It’s a last resort thing. And I was the perfect candidate. I have always been resistant toward the idea of getting brain surgery but I got to the point of hopelessness and frustration. I wanted to drive, go to movie theaters, hold a job without having tics hold me back so I took a leap of faith. The reason why I was so hesitant was because my handle who has Parkinson’s (another movement disorder) went through DBS and actually eventually died. His body deteriorated even faster after the surgery. Apparently they took a piece of his brain out I believe. My family was also hesitant and resistant of the idea for a while until my dad and neurologist brought the idea up. I was afraid of complications as death.
According to the graphs given me by New York University medical center (the place where I had my surgery) most people who went through the procedure was a success! And there are only a couple who’s Tourette’s became worse after surgery or didn’t improve at all.
It’s December, almost Christmas and how am I you ask? No improvement yet. They say it takes six months to a year to see results because I need to constantly readjust the voltage with a remote thingy.
What did the surgery entail?
What happened was they placed a few electrodes in my brain including a pacemaker on my abdomen where I charge myself every two weeks. The battery pack is where you can put the remote thingy to adjust the settings. There are different alphabetical groups within the setting that I work with for my brain. Group A, group B, group C, etc. with each group, I increase the voltage by .1 every few days to see how it affects my tics. Sometimes I get side affects such as dizziness or anger and rage.
They had to shave my entire head to do the procedure and now there’s a straight scar on my abdomen that goes horizontally.
I also have what I call speed bumps on my head where wires come out of my skull underneath the skin and goes all the way down to my neck, down across my collar bone and chest to my stomach.
I flew to New York a few different times for MRIs, tests, blood work and finally the surgery itself! I stayed there for two weeks for my surgery. It took I think a couple months or so to be fully healed. I was in so much pain, it didn’t hurt my head as much as my abdomen because they sliced across my abdomen to place a battery pack inside. They also stapled my wound sites on my head, so the day where they took out my staples it hurt like hell.
That’s basically my surgery journey so far! If you have any questions feel free to contact me or message below!
While walking around the mall, I had a tic. Two older couples stared at me and I politely bowed and quickly said, “I have Tourette’s”. The woman turned back at me in confusion, smiled and asked, “You want to arrest me?”. I responded, “No, no. I have Tourette’s Syndrome.” It took her a second to understand what I just said and then I added, “. . .but if you want me too I could”. She ended up laughing and said, “You’re funny. I love you”. I smiled.
(Thats me taking a nap on campus in the picture above lol. Someone caught me red-handed!)
If you want to know how to cope, you can skip the first paragraph and read the second one.
I never realized how many people don’t know that I have Tourette’s. Being at Bellevue College (former community college) for four years, I just assume people know! But that’s not good to assume. One time, I was hastily running around campus a lot to get errands done and to stop by my instructor’s office and to finish up homework all at once. I literally went all over campus. The thing I didn’t know happening was my science instructor, Mr. Fuller (an awesome, sweet, kind, geeky entomologist) was advocating for me all over the place because many students, instructors, and staff had no clue why I was screaming, shouting, stomping, and jumping. They probably thought I was some crazy, hyper student running around for no reason and shouting for no purpose. I was waiting for Mr. Fuller to be done with his class so I can talk to him and while I was waiting, I had intense tics as usual. I’d jump, clap my hands, shout out “hey!”, and stomp. Students were freaking out in his classroom, but because he didn’t want his students to embarrass themselves out of ignorance (and to educate them of course), he stopped lecturing and explained to the entire class about who I was and what I had. He also took the liberty to explain to other faculty, staff, and instructors who were super concerned when I was walking in and out of the faculty area. Some instructors wonder how I’m able to cope with my Tourette’s in class! Well, teachers all over the world, here’s my answer: I just do. lol
- When I take tests, or quizzes I do it in a separate room so I could not be so tense and not disrupt other students.
- The first time I came to class I would explain to all the students what Tourette’s is.The majority of the time, actually almost all the time, students would understand.
- I would also take short breaks when my tics get intense.
- I’ve had some student complaints here and there and there were ways around it. Some students instead, took the same class at a different time because they ultimately couldn’t cope with my Tourette’s. I have every right to get an education of course, but there are some students who really couldn’t deal with the noise and we’d have to work our way around it.
- Unfortunately, there hasn’t been a year at Bellevue College that I haven’t encountered discrimination from an instructor. It makes me appreciate those who love and accept me as a student.
- I am just a regular student doing my regular thing, but often, my tics can be so bad that doing school work or homework difficult so communicating with my instructor in an open and honest way is super important. Also, being patient with one another is important, too, to have a strong healthy student-teacher relationship.
Hello! My name is Megan Phox
Here is a blog to learn more about Tourette’s Syndrome (specifically my experience). Tourette’s is a neurological condition where a person has involuntary physical or vocal “tics” or symptoms such as shouting, screaming, jerking of the head, blinking, etc. It has to do with imbalanced brain chemicals. This is a safe place where you can ask questions that you would be too nervous (although you shouldn’t be) to ask me in person. All frequently asked questions will be in “menu”above where it says “FAQ”. You can also e-mail me at Meganitup@hotmail.com or add me on facebook (search Megan Phox) to ask me questions. Thank you everyone!
The menu above also has links to “Tics & Fitness” (where I talk about my exercise and nutrition journey) and “Tics & Art” (where I discuss about my artistic endeavors along with a business I’m running where I sell hand-made stickers and sell stationary!). Soon to come is “Tics & Speaking” where I share about my career as a motivational speaker! I’m not one yet, but definitely on the road to becoming a speaker. Just wait 😉