Someone asked me recently how I would feel if I didn’t have Tourette Syndrome, if suddenly one day I woke up and it was gone. I’m sure it’s a question that anyone with a disorder, or affliction or disability considers and struggles to honestly answer. It’s become such a part of me, woven itself so intricately into the fabric of my life, that even at its worst, I cannot imagine living without it. It’s become a part of my identity.
I’ve had Tourette Syndrome for 24 years. It’s waxed and waned, gone through the roller coaster of okay to really bad to good and back through again.
And this month, for no clear reason, it’s been on one of the longest bad streaks I can remember since my teens. I’ve tried almost every medication, and had almost every adverse reaction. I’ve tried different diets and alternative therapies. I’ve had 2 shoulder operations and most recently a hip operation, largely needed because of the twitches, or tics, that wear them down.
Despite all this, I’ve always considered myself lucky. I graduated from college and graduate school with honors. I own a thriving company and have traveled the world. To top it off, I have the most amazing community of family and friends who have always treated me with such a pervasive sense of normalcy, even when my Tourette’s has been at its worst, that it negated any sense of being different. "Normal" and "different," though, have always been two sides of the same coin, and which one prevails is simply a matter of who is flipping it.
When the ‘different’ side of the coin lands face up, it’s often when I’m dealing with the stares, giggles, whispers, and imitations of strangers trying to mimic my movements to their friends. It grinds on my nerves and patience and I try to respond in the most diplomatic way I can, each time trying to convince myself that education is the best way to handle curiosity and combat ignorance. But sometimes you reach your breaking point. I shouldn’t have to explain to adults that it’s impolite to gawk, or that they should explain to their children who are doing it that they should stop.
Sometimes, though, my family and friends reach my breaking point for me. It’s the community that speaks up for me when I’m just too tired and angry to do so myself. It’s in these moments that I realize what an incredible group of people I have in my life and just how important a sense of community is for anyone that is struggling with something. Community takes many forms. It can be one you consciously build for yourself; it can be a spontaneous one: people you don’t know, but who refuse to be silent bystanders.
So, you might think it crazy for me to say that I’m grateful for having Tourette Syndrome. I’ve always said that TS is the best social housekeeper. Everyone tries to keep up appearances. It's a natural urge to try to put rose-colored lenses on others when they are looking at you.
Occasionally, the walls around the world we've painstakingly built collapse, the rose-colored glasses fall off, and we can't help but be exposed and raw. Some people in our lives will stick around regardless; others go the other direction, as association is tantamount to admitting there are cracks in the foundation of their own lives. Those that stick around are the silver lining in every cloud. Those that are confident enough to acknowledge that life can't be always planned, that our collective experiences, particularly the challenging ones, are what make us beautiful, what ground us and give us depth and substance.
Marisa Lenger resides in New York City and is the Founder and Owner of Venturer Travel (http://www.venturertravel.com), a bespoke travel consultancy. She is a coach at the Tim Howard New Jersey Center for Tourette Syndrome Leadership Academy and speaks publicly about Tourette Syndrome and bullying. Marisa is also active in Jewish philanthropic life as a Member of UJA Federation of New York's Young Entertainment, Media and Communications Committee. She is also a Member of the Slingshot Fund, a giving circle of funders in their 20s and 30s who support innovation in Jewish life.