On my blog, my social media, and even in my personal life it’s been hard to open up about the various conditions I live with. Hashimotos, Anemia, IBS, Amputation, and Fibromyalgia are all part of my world and I have shared about them out loud slowly.
Another thing about me, that’s been part of me since birth, this girl is also the face of Tourette’s Syndrome.
Being in my early 40s now, as you can imagine I didn’t get a diagnosis as one would probably get now a days.
There is more medical knowledge and public awareness on this disorder now than there was in the 1980s and even in the 90s when it was suspected I had this by a emergency room doctor while I was there for unrelated treatment, the first of severe kidney issues I would go on to have, and he noticed my “twitching”.
Prior to that day my twitches had gotten very much noticeable by myself and my parents, I recall nodding my head to the side repeatedly; my nose was constantly flaring and twitching too. I remember eye blinking and rolling, arm stretching and twitches as well.
Testing at around age 13, including multiple EKGs, resulted in an anxiety diagnosis.
That’s what I believed to be true, but could never understand how without thought, without control my body was acting how it was, regardless if I was happy or sad.
However in times of stress it was and is more predominant for sure. Oddly enough in times of adrenaline and concentration it nearly fades for me.
I don’t remember anyone other than family pointing it out in my early childhood, that’s not to say they didn’t, I just am lucky it was not something that stands out.
I was however very aware I was “fidgety” while my mom constantly yelled stop it I’d stop dead in my tracks becoming aware quickly of these odd movements.
In that ER room in the early 90’s, the Dr. asked my mom if she found I made involuntary movements and if I swore uncontrollably. In her broken English all she heard was swear? And she laughed and shook her head yes, I was a big potty mouth in my youth, not much has changed lol.
The Dr. proceeded to explain not regular cursing but instead spewing of inappropriate words, how knowledge of the disorder has come leaps and bounds, we don’t all shout sh*t sh*t sh*t in the middle of Sunday dinner, but if we did so what?
He and I talked briefly and he told us both he was most certain I had what was called Tourette’s Syndrome. I still wonder if my parents truly believed my teen body gestures where that of a drug user, I hope they truly believe now that I had never touched drugs, sadly I read many with this disorder are labeled as “tweaking”, my parent’s concern stemmed from love and lack of awareness so no hard feelings but in this day and age we need to stop with the labels.
I was around 14 at the time; I filed what he said half to the back of my mind, not fully believing him, honestly not knowing where to turn, even though googling your symptoms now a days can scare you, not having a source of info then scared me more.
I would go on to lose my right leg below the knee a few years later. Dealing with both conditions as a young adult, and all I deal with now, I’ve often wondered who I pissed off in a former life or maybe I was a strong warrior princes, now back on earth combating another tough life, I like to dream its the latter.
I do remember thinking am I going to start “howling at the moon”, am I going to start spewing inappropriate and odd words out of the blue? Are my twitches going to turn into self-harm?
My parents for whatever reason never stopped to acknowledge what was said in that ER room, perhaps their culture and language barrier contributed to that, I’m not sure, but I do know I was imprisoned with the knowledge all alone.
I remember dating was hard , I had a wall up that I didn’t even realize existed until recently, I was broken in so many ways no one could possibly love me I subconsciously thought, I was scared and devastated, but proceeded with life mostly in denial and never spoke the term Tourettes often, if at all then.
My friendships carried on as usual, as I mentioned before, as far as I recall no one mentioned it enough to leave a lasting memory, it’s possible I’ve blocked it all out.
As an adult, even after divorce, my warrior princess persona thrived and I once again dated and survived as a female amputee with Tourette’s.
My twitches never went away, they get worse, they get better, and they change often, I never quite understood why for months I’d stretch my arms in an OCD manner and then without thought just stop, only to be curling my toes to the point of severe cramps but unable end it at will. After my right leg was amputated my brain didn’t get the memo, neither did my Tourette’s, toe curling and phantom pain cannot co-exist!
I did eventually say to close family and friends in my young adult life I HAVE TOURETTES, I acknowledged and owned it out loud because by then people were noticing. One friend of mine I’ll forever remember her kindness, whenever someone new would ask are you ok? Are you cold? She would chuckle and say she’s fine she’s just twitchy, and I was immediately removed from the dreaded spotlight I was under, somehow being twitchy was a valid answer that needed no further explanation, I feared the unknown if I ever had to reply I’m fine I just have TOURETTES to a stranger.
Hubz and my in-laws now have told me they noticed I twitched almost right away, however it was such a non issue that I cant even remember when or how I told him/them, 16 years later its as part of me to them as my smile.
If there ever was a doubt I was misdiagnosed (I had the doubts constantly between the fears of accepting I actually had it) those doubts were 100% gone when my then 5 year old son ( our 2nd youngest of 4) began showing signs.
He had severe vocal ticks as oppose to physical like me, he would cough so hard I worried he would damage his throat. He sniffed over and over as if he had a cold for months at a time, he made little odd grunts and such, and like his mama he rolled and blinked his eyes.
As he has got older it was a mix of vocal and physical ticks.
He is 19 now, only child of ours to have Tourette’s like mom, he still has a mix of vocal and physical ticks, but mostly physical, he, like I, has adapted to living with it, and we have never thus far had the swearing spews ( his mama’s potty mouth doesn’t count) , if it’s possible I believe we have mild Tourette’s compared to some, and without sounding rude or cruel, I am thankful!
A quick story, at work quite a few years ago I had a teen boy come up to me asking for help putting together a Halloween costume, it took no time at all for me to recognize the signs that he most likely had Tourette’s, I treated him as if his twitches were invisible, and I helped him find his costume. A few minutes later one of my young co-workers came up to me and said you stayed so calm with “him”, didn’t you notice his twitching?, I responded kind of rudely and I make no apologies, I said sure, I think he has Tourette’s like me and so? She actually went to school with him and thanked me for being so kind; something most weren’t to him! And she was shocked to hear I too had Tourette’s. I’ll never forget that and I hope he has been able to live his life with more kindness.
This is where I am an advocate for the internet for things like google and social media. My son and I had to grow up with this disorder on our own, luckily he had me, I had no one, and thinking of that boy at work, he too probably was/is alone.
I am grateful that going forward we have the ability to research about it, share ourselves with others who are like us, to educate the rest of the world, and not feel alone anymore ourselves.
We can prepare ourselves for if and when one of my grandchildren are born with it, there is a 50% chance he will have a child with Tourette’s and 10 to 15% one of his siblings will.
My parents nor my brother & nieces have/had it, girls also according to my research are less likely to be born with it, but here I am!
Shows like 90 day fiancé, Raising Tourette’s, celebrities like Neve Campbell (her brother),& Billie Eilish, bring tears to my eyes, not because I feel sorry for them, but because we are no longer alone with this disorder and the stigma is slowly vanishing, teen boys and girls will hopefully be able to live loud and proud and without fear or low self-esteem with it, and live “normal” adult lives.
Ironically I think if you ask anyone if it affected me as a teen, or even as an adult, I would put money on them saying “NO, she was always a bubbly life of the party, had good friendships and no lack of boyfriends”.
Sadly I hid it well, because inside and subconsciously I truly was affected in so many ways, and all I can do going forward is tell my story and hopefully save even one person from the same emotional rollercoaster.
If you live in canada and need support and info on Tourette’s visit the web site
JUNE 7 is national Tourettes Awareness Day.
So on this awareness day, an end note in the words of Samuel Comroe ….I got 99 problems & a twitch ain’t one!
If you didn’t catch Samuel on America’s Got Talent head over to his web site HERE
maybe it’s because I have Tourette’s, but I find him hilarious!
Where were role models like him when I was struggling as a young person with Tourette’s? Even though I am old enough to be his mother I am inspired by him, for myself, my son, and for all who are tied together by Tourette’s Syndrome.
We may not have any form of treatment but we have our voices to help put Tourette’s on the map.