Dear Teacher, Mentor, or Employer:
My entire life you lot having been telling me how slow I am, that I need to "pick up the pace." Each time one of you came to me saying something like this, wanting to please you and ever wanting to improve personal performance, I have endeavored to observe and take to heart any little tips that will help me speed up my work. Let me tell you something, when a person has Tourette Syndrome, among other things, veering away from what has become my norm is always a challenge, especially when learning something new. More on that later.
I remember the first time someone told me I was too slow and needed to "speed it up." It was art class in first grade. The second time was gym class that same year, because even though my knees were hurting me so badly that I could barely walk, let alone run, the so-called gym teacher didn't believe me and insisted that I complete my final mile long lap around the playgroud while the other children stood in line waiting for me to finish. Talk about humiliating. From there it was Girl Scouts, dance class, high school, and every single employer I've ever had.
You think it's because I'm lazy or don't care very much about my job? Let me tell you that I am probably one of the hardest workers that will come through your doors. I am prepared to go above and beyond my duties. Yes, sometimes it does take me a little longer than your "average" person. Sometimes I ask a lot of questions because I'm a perfectionist and want to be sure I have it right. I am a methodical person who cares more about quality, than quantity and when you ask me to speed up, you are only jeapordizing my efficiency and my ability to produce good, thorough results.
Having Tourette Syndrome makes me a high strung person. You think I'm lackidasical, while inside my nervous system is constantly running on "high" and the only way for me to keep it in check is to apply extreme focus to whatever task is put before me. You don't see the epileptic fashion in which my motor tics present themselves whenever I'm at home and am exhausted, stressed out, and/or just plain trying to relax. You don't hear the rain forest that is my vocal tics when I'm in the comfort of my own home and can finally release them without fear of scorn or rejection. You barely see the tip of the proverbial iceberg. In other words, it takes a lot of energy and focus to hold all that in and function out in the world and I'm doing the very best that I can.
You think I like hearing everyone and their mother tell me that I'm too slow? Walk a day in my shoes, taking the everyday criticism that your average subordinate does and add in a constant reminder of the area that you have seemingly fallen short in your whole life and tell me how how that affects your self-esteem and your job performance. Let me know how long you continue to do a good job and, further more, take some pleasure in what you do. Not long... Pretty soon you began to feel smaller and smaller, because nothing you ever do will be good enough and you will never measure up.
In closing, I want to do a good job. I want to do a great job. I want to accomplish my duties to the best of my ability and be able to go home at the end of the day feeling that I did just that. I'm bound to make a mistake now and then, but I want it to be because of simple human error, not because I was trying too hard to go beyond my capabilities in a failed attempt to keep up with a 'Now Society'.
P.S. Here is a link if you want to know more: Tourette Syndrome
Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts
July 26, 2016
May 13, 2016
Make Yourself At Home
When we get visitors, one of the polite things we say to welcome them is, "Please, make yourself at home." It's a sweet, simple gesture that conveys to the guest that you are happy to have them in your home (your private space) and want them to feel comfortable. Although, having tics and experiencing them is the norm for us, a lot of times we still have to get used to them. We don't get to pick and choose which tics we do and don't get; or for how long we'll have to endure them
I've encountered those who are uncomfortable with or irritated by my tics even after explanation. I suppose they deserve some credit for trying to hide their vexation. However, due to having a nervous system that's always in hyper drive and being a student of human nature anyway, I'm hardly oblivious to most people's feelings. Generally speaking, I am able to obtain a certain amount of objectivity in this area.
Despite having heard about it all my life, for the first time in 26 years I developed a throat clearing tic. At first I found it embarrassing. I was not used to this sound coming out of my throat outside of the normal reasons for it. Now it was presenting numerous times a minute, often several times in a row. In addition to this, my throat was getting sore from doing it so often. I sometimes (notice the use of present tense) worry that people will think I've got some sort of bug and will make them sick too with all my throat clearing.
Bearing all this in mind, everyone is susceptible to be startled by the unknown and I'm not faulting anyone for this, as I have experienced this phenomenon myself. I just have the advantage of being exposed to "the unknown" more than most and am therefore less phased by it. My point in sharing all this with you is not only to encourage you to explore and ask questions, but to help you better understand not just people with Tourette's, but anyone who deals with a "startling" disability. As alien, unsettling, embarrassing, and/or painful it may be to someone watching on the outside, think how much more difficult it is for someone battling it on the inside. A little compassion and understanding can go a long way.
I've encountered those who are uncomfortable with or irritated by my tics even after explanation. I suppose they deserve some credit for trying to hide their vexation. However, due to having a nervous system that's always in hyper drive and being a student of human nature anyway, I'm hardly oblivious to most people's feelings. Generally speaking, I am able to obtain a certain amount of objectivity in this area.
Despite having heard about it all my life, for the first time in 26 years I developed a throat clearing tic. At first I found it embarrassing. I was not used to this sound coming out of my throat outside of the normal reasons for it. Now it was presenting numerous times a minute, often several times in a row. In addition to this, my throat was getting sore from doing it so often. I sometimes (notice the use of present tense) worry that people will think I've got some sort of bug and will make them sick too with all my throat clearing.
Bearing all this in mind, everyone is susceptible to be startled by the unknown and I'm not faulting anyone for this, as I have experienced this phenomenon myself. I just have the advantage of being exposed to "the unknown" more than most and am therefore less phased by it. My point in sharing all this with you is not only to encourage you to explore and ask questions, but to help you better understand not just people with Tourette's, but anyone who deals with a "startling" disability. As alien, unsettling, embarrassing, and/or painful it may be to someone watching on the outside, think how much more difficult it is for someone battling it on the inside. A little compassion and understanding can go a long way.
June 21, 2013
Laugh Out Loud
So what tics do you have???
Ever have one of those laugh or cry moments? Tourette Syndrome can be frustrating, overwhelming, maddening, etc. but it can also be funny or silly. I've had people ask me this question soooo many times and I'm thinking: Where do I start? Do you want the manual? I love the above meme because it illustrates the answer to this question so perfectly. What I usually do when asked that sort of question is just rattle off the first dozen or so that come to mind.
So the meme out there these days for all of us Touretters is Tourette's Toucan! Some of them are funny or awkward, some are just irritants that we experience, and mostly all of them are relatable. If you click on the link attached to the site name and click on "Memes only" in the bottom right hand corner, you can take a look at all of the ones posted so far, but for today I'm going to name a few moments of my own. If you don't have TS or don't know a whole lot about it, some of the memes may be confusing, so feel free to ask!
I remember a time, not long after I was diagnosed, when I was lying on the couch having what's called a complex-motor tic. I was having a tic where my entire body was periodically jerking and shaking every which way. At one point I ticced so hard I fell off the couch laughing. Thinking back on it, the whole scene was kind of funny, but having those complex tics are not always fun, they can be downright aggravating and frustrating.
In fact, I've had many moments where I break down and cry because my tics are so overwhelming and "in my face" that I don't feel like I can cope on my own. I hope that everyone out there has some sort of support group or confidante they can lean on and draw strength from when their own is waning. The important thing to remember is that those hard tic phases don't last and the cycle will calm down and change just like any other. Lastly, please remember one can always contact the Tourette Syndrome Association when at a loss for answers. This is why promoting awareness and understanding is so essential, so that in the future there will be more and more resources available to the TS population.
May 29, 2013
Here's The Deal
Take it from someone who has been there. Seeing someone tic can often look/be funny, silly, unnerving, weird, etc. Sometimes I'm not even sure what to make of myself, especially if I'm dealing with new tics or a new set of tics. Every time I go out in public I play this mental game of battleship. How bad are my tics today? How much am I able to tic in front of people. Do I let people see my old tics, let alone new ones? What happens if I have a vocal tic? All this and OCD too??? It can be exhausting.
People don't always know how to approach someone with Tourettes or what to do if they see a person ticcing and that's understandable. It's nothing to be ashamed of, because often I, and others like me, am often more frustrated or confused then anyone looking in from the outside. So, what does one do when confronted with someone who has TS?
1. When talking to someone with TS, don't be afraid to look at them when they're ticcing. You're having a conversation, so it's perfectly acceptable to make eye contact.
2. Don't be afraid to ask if you are genuinely curious. Say something like, "Excuse me, I couldn't help but notice, do you have Tourettes?"
3. Do NOT ask ask them to stop ticcing. We literally cannot help it.
4. Remember that not everyone with TS is going to start spouting profanities. -Only 10% do and even they aren't guaranteed
5. Someone with TS needs to be included in groups, not excluded or isolated because they're different. Make it clear that they're welcome.
6. People with TS are naturally tense for a number of reasons. Do what you can to make them feel at ease.
7. Don't single someone out who has TS by pitying them or continuously asking them if they're okay.
8. Everyone has problems or something they need help with. If someone with TS is asking for help or special consideration, assume it's because they really need it, not because they just want attention.
9. If you're friends with someone with TS, learn to be accustomed to their tics, rather than constantly being startled or disconcerted. Body language alone speaks volumes. If we constantly have to worry about how our tics are going to affect whomever we are with, it puts us in a defensive position that prohibits us from relaxing and being ourselves.
10. Learn to accept others as they are with all their unique differences and challenges. Being able to coexist with others in a peaceful and meaningful way is invaluable.
This picture is not my property.
People don't always know how to approach someone with Tourettes or what to do if they see a person ticcing and that's understandable. It's nothing to be ashamed of, because often I, and others like me, am often more frustrated or confused then anyone looking in from the outside. So, what does one do when confronted with someone who has TS?
1. When talking to someone with TS, don't be afraid to look at them when they're ticcing. You're having a conversation, so it's perfectly acceptable to make eye contact.
2. Don't be afraid to ask if you are genuinely curious. Say something like, "Excuse me, I couldn't help but notice, do you have Tourettes?"
3. Do NOT ask ask them to stop ticcing. We literally cannot help it.
4. Remember that not everyone with TS is going to start spouting profanities. -Only 10% do and even they aren't guaranteed
5. Someone with TS needs to be included in groups, not excluded or isolated because they're different. Make it clear that they're welcome.
6. People with TS are naturally tense for a number of reasons. Do what you can to make them feel at ease.
7. Don't single someone out who has TS by pitying them or continuously asking them if they're okay.
8. Everyone has problems or something they need help with. If someone with TS is asking for help or special consideration, assume it's because they really need it, not because they just want attention.
9. If you're friends with someone with TS, learn to be accustomed to their tics, rather than constantly being startled or disconcerted. Body language alone speaks volumes. If we constantly have to worry about how our tics are going to affect whomever we are with, it puts us in a defensive position that prohibits us from relaxing and being ourselves.
10. Learn to accept others as they are with all their unique differences and challenges. Being able to coexist with others in a peaceful and meaningful way is invaluable.
May 23, 2013
Proud To Be Me
In all walks of life there are many people who would have one conceal certain things about oneself in order to preserve some social fantasy that they keep in their head, some picture that they harbor of how people should and do view them. I have touched on this subject before, but my heart especially goes out to those who are made to feel ashamed of their disorder in one way or another. This doesn't just apply to those with Tourettes, but also those who have other medical issues that can be considered a social stigma. I'm not saying anyone has to broadcast their disorder or should be known by it, but, they should not have to feel as if they are an inconvenience.
I was blessed to be raised in a family who let me be myself with and without TS and was encouraged instead of put down. I was always told that I would be able to do wonderful things, not just in spite of, but also because I have TS. I would be able to relate to people in a way that not everyone else can and I would be able to see people in a different light, because I, myself, had been there. I have experienced my own share of negative encounters with people because of the simple (or not so simple) fact that I have TS - some of these I have shared with you.
You may argue that learning of a person's disorder can change the way some people think about them or the way they treat them and you would be right. I have encountered such ignorance through my own eyes; but really, do I want to be close to and hang around people who think that way with such unwavering diligence? When I have children someday there is a 50% chance that they will be born with Tourette Syndrome and/or one of the other co-morbid disorders that I have. Society will do the job of making one self-conscious, ashamed, embarrassed, etc. about one's disabilities. Therefore, it has no place in the family. To anyone out there with children who suffer from such things or perhaps they themselves do, I would say, your disorder does not define who you are, but it is an integral part of who you are. Learning how integrate your "TS self" and how to live harmoniously with it instead of constantly fighting it is vitally important not only for your own peace of mind and body, but so that you may also be an example to others.
I was blessed to be raised in a family who let me be myself with and without TS and was encouraged instead of put down. I was always told that I would be able to do wonderful things, not just in spite of, but also because I have TS. I would be able to relate to people in a way that not everyone else can and I would be able to see people in a different light, because I, myself, had been there. I have experienced my own share of negative encounters with people because of the simple (or not so simple) fact that I have TS - some of these I have shared with you.
You may argue that learning of a person's disorder can change the way some people think about them or the way they treat them and you would be right. I have encountered such ignorance through my own eyes; but really, do I want to be close to and hang around people who think that way with such unwavering diligence? When I have children someday there is a 50% chance that they will be born with Tourette Syndrome and/or one of the other co-morbid disorders that I have. Society will do the job of making one self-conscious, ashamed, embarrassed, etc. about one's disabilities. Therefore, it has no place in the family. To anyone out there with children who suffer from such things or perhaps they themselves do, I would say, your disorder does not define who you are, but it is an integral part of who you are. Learning how integrate your "TS self" and how to live harmoniously with it instead of constantly fighting it is vitally important not only for your own peace of mind and body, but so that you may also be an example to others.
May 15, 2013
HAPPY TOURETTE SYNDROME AWARENESS MONTH!!!
With my college graduation coming up in three days, this seemed like a good time to share a couple stories. Now, you may have noticed that I haven't posted for a week, but that's because I was getting ready for this week's post and of course GRADUATION. Yay! Going through college with Tourette Syndrome has definitely made for an interesting ride. All the hard work I have put into my college career has paid off, but it hasn't always been easy. I won't say it hasn't been without its rewards though.
When I first started college, like most students, as freshman at West Liberty University I was living in the dorms just trying to acclimate to my new life. I had been going through a couple years of suppression where I had worked so hard to disguise my tics, that I couldn't tic if my life depended on it. This was all due to feeling humiliated at anyone seeing me tic, as many of them can be unsettling or distracting. It was as if that part of my brain had temporarily gone somewhat dormant to the point that if I did feel the need to tic, it felt alien and I almost couldn't. (I don't recommend this) So, the most I experienced were facial grimaces, crossing of the eyes, and scrunching up my facial muscles. I made a few friends, even met my first real boyfriend, and did pretty well in my classes.
During my sophomore year, I had begun to dislike dorm life and wasn't doing as well in school as I needed or wanted to. I missed my family (pets included) and I didn't like being away from everything, so I began to explore the idea of switching schools. I knew this would mean a longer ride and with choosing Wheeling Jesuit I would become a commuter, an idea that I was actually kind of excited about. When I entered WJU in spring of 2010, things began to look up, but it was only the beginning of one of the biggest challenges of my life.
In the spring of 2011, something got triggered in my brain and my tics came back in full force. It was was like I was that kid again who looked like they were constantly hyped up on sugar and caffeine. I began seeing a therapist to help me cope because ticcing in front of people, let alone in a small classroom, was no easier than it had been in high school. In March of 2012 I attended the National Tourette Syndrome Association conference in Arlington, VA. I met people of all ages who dealt with the same things I did. I wasn't alone in my TS anymore and that felt good. Long story short, I was inspired to do a TS Awareness Campaign for my undergrad senior project. It wasn't readily accepted, but I stuck to it and was met with success; even won a couple awards!
It was a long, arduous process to be able to tic comfortably in public. I took baby steps and LOTS of them, but today I can tic just about anywhere and as soon as it's over I resume "normal" activity as if nothing happened. I've noticed it seems to make most people more comfortable to see that it doesn't bother me or at least doesn't appear to bother me. There are still times when I struggle to tic in public. I have to remind myself everyday (especially if someone looks at me weird or is obviously startled by my tics) that it's not about them, it doesn't matter what they think, and without that part of me, the TS part, I would be a totally different person then the one I am today. So, take it from a very soon to be college GRAD: "We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot." - Eleanor Roosevelt
HAPPY TOURETTE SYNDROME AWARENESS MONTH!!!
When I first started college, like most students, as freshman at West Liberty University I was living in the dorms just trying to acclimate to my new life. I had been going through a couple years of suppression where I had worked so hard to disguise my tics, that I couldn't tic if my life depended on it. This was all due to feeling humiliated at anyone seeing me tic, as many of them can be unsettling or distracting. It was as if that part of my brain had temporarily gone somewhat dormant to the point that if I did feel the need to tic, it felt alien and I almost couldn't. (I don't recommend this) So, the most I experienced were facial grimaces, crossing of the eyes, and scrunching up my facial muscles. I made a few friends, even met my first real boyfriend, and did pretty well in my classes.
During my sophomore year, I had begun to dislike dorm life and wasn't doing as well in school as I needed or wanted to. I missed my family (pets included) and I didn't like being away from everything, so I began to explore the idea of switching schools. I knew this would mean a longer ride and with choosing Wheeling Jesuit I would become a commuter, an idea that I was actually kind of excited about. When I entered WJU in spring of 2010, things began to look up, but it was only the beginning of one of the biggest challenges of my life.
In the spring of 2011, something got triggered in my brain and my tics came back in full force. It was was like I was that kid again who looked like they were constantly hyped up on sugar and caffeine. I began seeing a therapist to help me cope because ticcing in front of people, let alone in a small classroom, was no easier than it had been in high school. In March of 2012 I attended the National Tourette Syndrome Association conference in Arlington, VA. I met people of all ages who dealt with the same things I did. I wasn't alone in my TS anymore and that felt good. Long story short, I was inspired to do a TS Awareness Campaign for my undergrad senior project. It wasn't readily accepted, but I stuck to it and was met with success; even won a couple awards!
It was a long, arduous process to be able to tic comfortably in public. I took baby steps and LOTS of them, but today I can tic just about anywhere and as soon as it's over I resume "normal" activity as if nothing happened. I've noticed it seems to make most people more comfortable to see that it doesn't bother me or at least doesn't appear to bother me. There are still times when I struggle to tic in public. I have to remind myself everyday (especially if someone looks at me weird or is obviously startled by my tics) that it's not about them, it doesn't matter what they think, and without that part of me, the TS part, I would be a totally different person then the one I am today. So, take it from a very soon to be college GRAD: "We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot." - Eleanor Roosevelt
HAPPY TOURETTE SYNDROME AWARENESS MONTH!!!
March 30, 2013
Part of Me
There are times in everyone's life who has TS or any other disorder that is lesser-known and/or publicly visible, when one is faced with having to fend off ignorant comments or actions. I've been fortunate enough not to encounter many of these moments, but that doesn't make it any less hurtful. On one such occasion I had a run-in with a professor, in college, who thought that because I had asked for an extension on an assignment that I was using my disorder as an excuse. Before that I could never imagine a professor being so cruel and it took a while to get past it. I don't know about the rest of you out there who live with TS, but to me, it was one of the highest insults.
What is my point in telling you this story? Well, last week I gave a brief description on what Tourette Syndrome is and got a lot of readership from it, so I thought I would follow up a bit. I don't believe people without TS and even some who have it realize what an integral part of your life it becomes. It becomes so much a part of you that, at times, you may not even notice light ticcing. You may not even notice others who are ticcing around you, because to you it's as normal as sneezing. Just like a sneeze it can be troublesome, but that doesn't mean it is the bane of your existence. Those of us who are born with it usually learn to look at the world with a different eye. Hopefully, in most cases, it is with a deeper perception and a big heart.
I live with TS every day and every night. I would be a different person were it not for my TS. I'm not cursed or "doomed" to live a life with TS. I am blessed to have been given an open heart for people who are not the same as me and the ability to look at people with a more unbiased discernment - a difficult task in today's untrusting society. To get a deeper look at what TS is and looks like, take a look at this excerpt from HBO's I Have Tourettes, But Tourettes Doesn't Have Me.
This second photo is courtesy of Jackie Ruth Gold.
What is my point in telling you this story? Well, last week I gave a brief description on what Tourette Syndrome is and got a lot of readership from it, so I thought I would follow up a bit. I don't believe people without TS and even some who have it realize what an integral part of your life it becomes. It becomes so much a part of you that, at times, you may not even notice light ticcing. You may not even notice others who are ticcing around you, because to you it's as normal as sneezing. Just like a sneeze it can be troublesome, but that doesn't mean it is the bane of your existence. Those of us who are born with it usually learn to look at the world with a different eye. Hopefully, in most cases, it is with a deeper perception and a big heart.
I live with TS every day and every night. I would be a different person were it not for my TS. I'm not cursed or "doomed" to live a life with TS. I am blessed to have been given an open heart for people who are not the same as me and the ability to look at people with a more unbiased discernment - a difficult task in today's untrusting society. To get a deeper look at what TS is and looks like, take a look at this excerpt from HBO's I Have Tourettes, But Tourettes Doesn't Have Me.
March 23, 2013
What is it?
As I originally said in the beginning, I created this blog as a portal into the world of Tourette Syndrome. I planned it originally to be a follow-up to an informational lecture. However, said lectures will not be taking place until later in the year, so that being said I thought it would be nice to give everyone a general explanation of what TS is.
Tourette Syndrome is a genetic neurological disorder characterized by involuntary motor and vocal tics including, but not limited to: shaking, jerking, pressing, squeaking, etc. No one case is the same. The tics are preceded by a premonitory urge. Attempting to suppress the tics only causes undue stress on the individual. In order to be diagnosed with TS, one has to have motor tics and at least one vocal tic for a period of more than one year. This does not mean that the tics stay the same. They are always changing in frequency, type, and severity. Coprolalia (involuntary swearing) is the most publicized part of TS. However, it is only one cheerio in the box. Less than 10% of the TS population has it and just because they get it, doesn't mean they'll always have it. As I said, tics come and go.
I will say one thing about Coprolalia on my proverbial soap box. First off, it's offensive to the TS Community that that is all most people are shown about us. It gives a bad, limited image of an already lesser-known disorder. Secondly, it doesn't really reflect badly on us. It reflects badly on the narcissistic, single minded people behind all that bad publicity - that they would stoop so low as to make something serious into a joke to get a boost in ratings, get a laugh, etc. at others' expense.
Tourette Syndrome is a genetic neurological disorder characterized by involuntary motor and vocal tics including, but not limited to: shaking, jerking, pressing, squeaking, etc. No one case is the same. The tics are preceded by a premonitory urge. Attempting to suppress the tics only causes undue stress on the individual. In order to be diagnosed with TS, one has to have motor tics and at least one vocal tic for a period of more than one year. This does not mean that the tics stay the same. They are always changing in frequency, type, and severity. Coprolalia (involuntary swearing) is the most publicized part of TS. However, it is only one cheerio in the box. Less than 10% of the TS population has it and just because they get it, doesn't mean they'll always have it. As I said, tics come and go.
I will say one thing about Coprolalia on my proverbial soap box. First off, it's offensive to the TS Community that that is all most people are shown about us. It gives a bad, limited image of an already lesser-known disorder. Secondly, it doesn't really reflect badly on us. It reflects badly on the narcissistic, single minded people behind all that bad publicity - that they would stoop so low as to make something serious into a joke to get a boost in ratings, get a laugh, etc. at others' expense.
February 14, 2013
Intro
Hey Everyone!
Welcome to Tourettisms -Observations from an Irish Princess. For those of you who don't know my middle name is Erin, which means Princess of the Isles, hence the name for this blog. I will be posting as least once a week, hopefully more once this takes off. If you have any questions, please feel free to ask.
My first topic is about a Tourette Syndrome (TS) Awareness Campaign I'm doing in the Ohio Valley. I am taking the message to a number of audiences, because I feel that it is important that we get the word out there about what TS really is and how to deal with it. Back in March of 2012 my dad and I went to the National Tourette Syndrome Association (TSA) conference in Arlington, VA. I encountered others with TS and many supporters. It was a great experience and I can't wait to go back in 2014.
Have a blessed day!
Welcome to Tourettisms -Observations from an Irish Princess. For those of you who don't know my middle name is Erin, which means Princess of the Isles, hence the name for this blog. I will be posting as least once a week, hopefully more once this takes off. If you have any questions, please feel free to ask.
My first topic is about a Tourette Syndrome (TS) Awareness Campaign I'm doing in the Ohio Valley. I am taking the message to a number of audiences, because I feel that it is important that we get the word out there about what TS really is and how to deal with it. Back in March of 2012 my dad and I went to the National Tourette Syndrome Association (TSA) conference in Arlington, VA. I encountered others with TS and many supporters. It was a great experience and I can't wait to go back in 2014.
Have a blessed day!
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