Ang "Tics" at "Blahs" ng Buhay Ko (The Tics and Blahs of my Life)

By: Andrei Salazar (a customer service representative, diagnosed with Tourette Syndrome)

tic: nailingon ko ang aking ulo sa kanan; "nakita ko ang totoong mundo kong ginagalawan"

tic: bumaling naman ako sa kaliwa; "nakita ko ang mga taong nangungutya"
tic: naitaas ko ang aking ulo; "Diyos ko, ikaw ang dahilan ng lahat ng ito"
tic: bigla kong naibaba ang ulo ko; "At ako'y nangumbaba at nagdasal ng patuloy na pag-unawa ng kapwa ko".
tic: kaliwang braso ko'y naihampas sa hangin; "At doo'y nakitang humiling"
tic: kanang braso ko nama'y biglang naibaling ; "Nang aking nahawakan ang kapalaran na kayang abutin".

blah: tugon ko sa mga taong hindi pa nakakaintindi; ng mga bagay at tunay na nangyayari
blah: tugon ko uli para ipaalam ang mga bagay na dati ay ako lang ang nakakaalam.

tic; blah; tic; tic; blah; blah; blah: marahil ay isang awiting kami lang ang may alam; ng mga tono at liriko na kami lang ang nakagagawa.

tic; blah; blah; tic; blah; tic; blah: sa isang banda nama'y nananawagan; kami'y unawain at pakinggan; pagkat alam nami'y hindi bingi ang lahat; sa totoo naming tinig at nararamdaman....

.

The One to Five of Coping with TS

The One to Five of Coping with TS

By: Guia Roa S. Soriano (A Labor and Employment Officer, diagnosed with TS)

I’ve been living with this on and of tics for like 15 years now. It is only when I was 20 years old when I was able to find it’s name, Tourette Syndrome. I admit it wasn’t easy at first, but through my own coping mechanisms I was able to conquer it. So I would like to share with you the 5steps that help me cope with TS.

1. Acceptance. I believe that to make the a life of an individual a lot easier, acceptance is one factor.

Acceptance from the side of the family that someone from their clan is having this different gift that He gives only to those who can handle it. I am blessed to have a family who, after being able to understand the diagnosis to me, never treats me differently. Just the same smart, stubborn, and pretty (oh yes am) lady member of the clan. Me and my family even joke at it whenever my vocal tics are becoming loud like, “anlakas naman nun.”

Acceptance from the side of your true friends. I am very lucky to have friends who had accompanied me in my journey in searching for the answers behind my tics. One of my friends is the one who saw the website of PTSA (ticawaywithme.blogspot.com then) and told me about it. Since then they’d been with me in looking for explanations. A line that my friend said that I will never forget, “isa ako sa mga unang nakaalam na may TS ka. Bukod dun wala naman akong ibang nakita. Hindi naman naapaektuhan ang productivity mo.”

Acceptance from your side. If you cannot accept that you have that special gift, don’t expect other to accept you. So start from there. Accept that you are one of the chose few. Remember according to research most of the people who have TS are those who are intelligent and beautiful/handsome.

2. Know that you are just like anybody else. We don’t need special treatment, it will just trigger the situation. Study like any other students do. Work like any other employees. Like what I said in the interview before, “we are just like any other people, meron lang kaming sound effects at choreogaphy sa katawan.” Would you believe that I even get invitations to host some events? (I am a cool emcee, try me.  )

3. Understand those who can’t. I know there would always be that stare from other people who don’t know what TS is. Let them stare for crying out loud. You won’t die of their stare. And whenever people laugh at you, let them laugh their heart out. Me, whenever people laugh at me because of my tic I just say in my mind, “buti na lang hindi sa inyo napunta ‘toh. Hindi niyo kasi maiintindihan. Poor you.” Let’s just say that we are more intelligent than them so let us be the one to understand.  Don’t expect everybody to understand you. Just understand them.

4. Learn to laugh at it. Since you cannot prevent people from lauging about it, learn to laugh with them. Like what they also say, “if you cannot beat them join them.” It won’t help if you will just go to one corner and fret over the situation. Believe me, when you learn to laugh about it sometimes, life will be a lot easier.

5. Pray. This will be your best armor in surviving a life with TS. So learn the art of constant praying. Pray that He may give you the willingness to go on with life. Pray that He will give you the strength to fight the battle. Pray to give Him thanks for that special gift.

Real Stories: A Personal Essay of a College Student With TS

 

"My Personal Essay"
By: Rafael Francisco Zamora Bunye (a college student diagnosed with TS)

I've had quite a number of experiences that helped to define me as a person. Though they are not that many, I believe that those experiences helped shape the person that I am today. But in all of those, one sticks out the most. This is the main topic of my paper.

I have Tics. I have had it as a child but didn’t really understand what it was until I found that that unusual thing was called to be Tourette’s Syndrome. To those who may not know what it is, Tourette’s Syndrome, as defined by science, is a hereditary, neuropsychiatric disorder characterized by multiple physical tics and at least one vocal tic. It is also called Tics for short. In layman’s term, it is a disorder that is inherited from the parents which causes the body or some specific body parts to jerk otherwise make some sounds uncontrollably. With it being hereditary, I inherited my Tics from my father who inherited his Tics from his father and so on. When a person has Tourette’s, it is hard for him to control his reflexes and since I also have it, you might see my arms, legs or even my whole body jerking a lot. I would also make some sounds, which too is uncontrollable.

Having Tics would make it hard for me to somewhat socialize since people would always ask me why I’m jerking a lot or making certain sounds. Back when I was new to the whole Tourette’s, I didn’t know how to explain it so I would make excuses like I’m itching or I’m just stretching. It is also hard for me since people would have the tendency to stare at me while my Tics were acting up or sometimes even make fun of me and mock me. Those things would greatly affect my self – esteem because it made me feel unaccepted and it makes me think that there’s something wrong with me. It would again be hard for me because I have a difficult time in doing some things like the ROTC in school, driving and just plain keeping still. With those being the case, it’s hard for a person with Tourette’s like me to have a high self – esteem.

But even if those happen to me, it doesn’t stop me from doing things I love. Knowing that I can’t control what people thought of me, the best thing I did was to control what I thought of myself. I always tell myself that I am normal like every body else but unique in my own way. I keep on thinking that my Tics are an advantage rather than a disorder. It is an advantage because it acts like my trainer in building my self - confidence. I get help from my family and friends who always support me in everything I do. They are the ones who remind me to relax when my Tics are acting up and tell me that I can do anything despite my condition. I also get help from watching inspirational videos about Tourette’s and reading books about keeping a high self – esteem. I certainly love the quote of movie that said, “I have Tourette’s but Tourette’s doesn’t have me.” I always keep that quote in mind whenever I feel down about my Tics because it lifts up my spirit to continue to strive harder and attain my goals in life. And whenever someone tries to make fun of my Tics, I would just laugh along with them because I’m not insecure about it anymore and I’ve accepted it. I would sort of find it funny too. Whenever someone asks me about my Tourette’s, I wouldn’t make excuses about it but instead, openly talk about it and explain it to them.

I would like to achieve my goals about Tourette’s someday. First of all, I’d like to be a spokesperson about Tourette’s and inspire a lot of people who have it to do what they love and not be stopped by their Tics. I would also like to help people become more aware of Tourette’s Syndrome and the impact on the lives of people who have it. I would like to help children and teenagers cope with their Tics and to have a high self – esteem so they won’t be ashamed of their Tourette’s. Lastly, I would like to inspire and show people that having a disability is not a weakness or disadvantage and it is not a roadblock in living a happy life and fulfilling your dreams.

Having all these said and done, I could say that having Tourette’s Syndrome and how I chose to deal with it is a very significant experience for me that helped define myself as a person. It helped define me for it has contributed in my high self – esteem. When I chose to deal with it in a positive manner, it helped me make a lot of friends and meet new people. It has given me the confidence to join a lot of activities in my village and in school. It taught me how to face my other problems. It taught me that there is good in even the most difficult of times. It showed me not to be ashamed of who I really am and to just be myself. As what Brian Tracy, a self help author, once said, “ You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.”

Real Stories: Thoughts of a Mother with Son who has Tourette Syndrome

By: Mardi Conde Puno (a language instructor and a mother of a son with Tourette Syndrome)

tourette syndrome is a neurological disorder manifested by at least two motor tics and one vocal tic. motor tics can be as simple as the blinking of the eye, to facial twitches, head jerkings, movements of the arms and even the legs or the abdomen. vocal tics can also be grunting, to the worst cursing and swearing of words..all these tics are involuntary and can't be controlled though there are times that they can be suppressed.

my son, john j has tourette syndrome. he was ten years old when i noticed that his eye keeps on blinking and later on his mouth moves as in facial twitches...i was frightened and alarmed. he was constantly scolded coz we always tell him to try to control the movements. i didn't know anything about tourette syndrome. i brought him to our family doctor and later to two eye doctors but no findings came. i walked in to a clinic of a neurologist but still nothing was diagnosed. the tics come and go and timely that they don't appear when we are in a clinic.

after a year, i was able to watch "front of the class", a movie about a teacher who has t.s. i gathered the whole family and we watched the movie in silence and with tears in our eyes. it was then that i realized that my son has tourette syndrome. i researched almost daily and i also let him read my researches. there is no real cause yet of t.s. and no cure although there are a lot of researches being done . medications are given to some but not to cure but to minimize the tics...i decided not to give him any coz the tics are mild and many are complaining with the side effects of the medicines. they are much worried about the side effects. and so i told my son that we won't be taking meds. since they don't cure but instead we offer this disorder to the Lord and pray. in His infinite love and mercy, i pray to the Lord that his t.s. will be cured one day in His time. according to research 75% of children with t.s.. lose the tics as they rreach early adulthood. they do become rampant and very noticeable on puberty age coz this is the age the child is very much stressed. i expect the worst to come coz he is now 13 but i trust in Him to help us cope with this. i pray for strength and acceptance daily.

at present, john j is having a lot of facial movements like eye blinkings, facial twitches, noddings, head jerkings , hand movements...the tics come and go, wax and wane. sometimes they are very visible but sometimes hardly noticeable. as he is now in to high school, into a new school i talked with his adviser about his t.s. everyone in school knows about his t.s. and so they are aware of it and so almost no one teases him or ridicules him. his vocal tics include grunting and sometimes he repeats words although his vocal tics aren't as strong as his motor tics.

many thanks to the Lord for my answered prayers like i no longer cry when i talk about his t.s., less bullies in school, his being happy in his new school. more strength for all of us esp. his pa. actually the least worrier in the family is john j. he has a great attitude towards his t.s. he only gets affected when people stare at him. this is his cry to all...please don't stare at me.

when we were interviewed by GMA , he was very willing and didn't hesitate. i explained to him that the interview is for public awareness and public education. i am so proud of my son and i love him so very much. with or without t.s., i thank the Lord He gave me john j.

By: Mardi Amadora Conde Puno (a language instructor and a mother of a son with TS)

Real Stories: A Life with Tourettes

Yes, I have Tourette's too.

After putting up the org (PTSA) and appearing on numerous TV shows that featured TS, most people might say that I have successfully conquered TS.

Guess what... I still haven't.

Sometimes I still get hurt when I get stared at. At times, I still feel insecure; my past still haunts me. And my tics have even started to get in the way with my keyboard playing.

I may not have conquered it, alright. Perhaps, I never will. But what's important is that I've conquered two things that are ever harder to conquer- the fear of living life, and the fear of loving others completely.

Life can be as hurtful as much as it is beautiful. Insecurities ought not to put us down, but to merely put our feet on the ground. TS has taught me and my loved ones how to be more understanding and patient. I will therefore live my life and continue coping AT ALL COST.

Guess what? I don't even think it's wrong to think that I have not conquered TS, and that TS has conquered me instead. It's not that I have given up or given in to it. It's just that something.... Someone greater has conquered me entirely, anyway...

...Lord, I surrender everything to you. Just keep on holding my hand, please... kahit malikot s'ya :)

And babe... thank you for loving me as I am.

By: Marlon Barnuevo (PTSA's co- founder, industrial designer, musician, diagnosed with Tourette Syndrome)

Real Stories: January 2011 Note

Hello! I have Tourette and I am proud of it. It was a blessing for me and not a hinder to my success. I inherit it from my dad side, a third generation. There were times I feel down because of my Tourette Syndrome, some people don't understand what really Tourette is. I cry.. I got hurt... I tell to my parents how I feel having Tourette in my life.... But this is how Tourette works in my life. Having tics in a split seconds, some staring at me, some don't understand, some looking at you from head to toe. BUT to tell you honestly, they make me better and stronger person. :) They make me to stand by my own and shout to the world I have Tourette all we need is understanding. If you can't understand us, may God light ups your mind. We are unique and perfectly molded by our savior. Proud! -Aileen Pacia (a student, a model, a Filipino with Tourette Syndrome)

Real Stories: "Buhay Tourettes"

"Buhay Tourettes"
Sa Panulat ni Alec Loteria (a 20 yr old guy diagnosed with TS)

Tinitingnan ka at minsan pinagtatawanan ka pa, sa bawat galaw ng aking katawan na lagi nilang nakikita
walang biro na araw araw ko yan nararanasan
at binabale-wala ko lang ang mga ito sa aking isipan
kaya ako nahilig makinig ng musikang mararahan
dahil ito'y nagpapasaya sa akin at higit sa lahat hindi nila ako pinagtatawanan.

Nakakapagod at masakit sa katawan
pero siguro may dahilan kaya niya ibinigay sa amin ang ganitong karamdaman
madaming tao ang hindi nakakaalam sa karamdamang ito
at bihirang tao lang ang meron nito
pero ang mga taong iyon ang nagbigay sa akin ng pagasa
para maipagpatuoly ko ang aking mga pangarap na kailangan kong matamasa...